Because I Said So

Getting Ready for #3

2012-01-26T10:03:00.000-05:00

Spring.

Within the next 6 months.

Oh boy. Here we go.

Yesterday C had her appointment with the interventional cardiologist, the doctor who does her heart caths. We knew this day was coming but knowing the day is coming sure does nothing to lessen the dread I feel in hearing the words, we are ready to schedule C for her next procedures.

Ok, how about I am not ready. I am so not ready to turn her over again to the surgeon and have her (hopefully for a long while) 3rd OHS.

But, she is ready and that is what is important.

1) She is big enough - C now weighs in at a whopping 27 pounds, and if you think I am overly proud of that, well, I am. She still vomits at least once a day, even though we do have days where she will not vomit at all. And she still does not eat or drink anything by mouth. So for her to be this big and have this kind of weight on a strict, tightly balanced g-tube diet is awesome.

2) She is strong enough - Her stamina is thoroughly shocking to everyone. She rarely takes a nap and generally runs, jumps, climbs, chases her brothers, rolls all over and twirls in circles ALL day. She does not do the more typical wheezing or catching of breath that other heart babies do and although she is semi-permanent blue right now (lower oxygen sats and all) she does not become more blue when she is doing all of the aforementioned.

3) Her heart is strong enough - C's echo yesterday showed her heart is functioning so well right now. She has a super strong right pumping ventricle, her function is awesome, there is little to no regurgitation in her valves, her tricuspid valve looks great, her RA and PA's are wide open, her Glenn is wide open and best of all her pulmonary veins (her 2 previous surgeries addressed repairing these) are wide open. Her lungs are strong and her heart is just functioning at the best it can.

4) Her arrhythmia is in check - Although she is still on one medication for the arrhythmia she has not shown any break through problems.

5) She is healthy - Outside of some nagging cold/virus issues with her runny nose, which could be numerous other things as well, including allergies and teething, C is healthy. Her body is doing everything it is supposed to be doing. She is still a little behind in development but considering how her heart functions and everything she has been through she is really not that behind on development. If you did not know she had issues you would not be able to really tell she was any different from any other 2 year old.

Of course we are scared and terrified and nervous and all those other horrible adjectives. She is so awesome right now we do not want to do anything to possibly lose pieces of C or lose C altogether. After speaking with the cardiologist, which can I just say, he is so awesome, we are planning on scheduling C for her next heart cath and then 3rd OHS (the Fontan) sometime in April or May. We will be looking for after flu season but before July as we do not want to push this too far into the summer.

Carolena the Rock Star

2011-07-22T10:52:00.000-04:00

Article written by a local pastor about C and the race this weekend:

http://withexpectancy.com/2011/07/baby-c/

And her first on-air interview with our local FOX affiliate:

http://www.fox4now.com/multimedia/videos/?bctid=1069765841001

Carolena is quite the rock star!

Carolena is Famous

2011-07-19T13:48:00.000-04:00

After working so hard on getting any media attention, we were interviewed last week for C's fundraiser this Saturday. I think the article turned out pretty well. Here is the link:

http://www.news-press.com/apps/pbcs.dll/article?AID=/201107190110/HEALTH/110718048

I told Kevin, I am so glad the first picture is of him and not me :)

And After All of That

2011-06-30T11:26:00.000-04:00

Yesterday finally came. The day I have been dreading every since the EP cardiologist gave the very first no response to our question of when can we replace C's feeding tube. With C's heart defects and now her arrhythmia issues including the medications she is on for the arrhythmia, putting her under any sedation at all is extremely risky. Cardiology has been encouraging us to put off changing her tube out until it was absolutely necessary. So, 13 months after C got her very first (and only) feeding tube the day finally came where we could no longer use her peg tube. Yes, C still had her peg tube as placed in June 1, 2010. Fortunately for us, we kept the outside tube extremely long, never cutting it shorter initially. But, as of two weeks ago, we were really running of out length and therefore the necessity of changing her tube.

As you can see for the picture above, the tube for her peg was so short and we were losing more each day. Since we started the blenderized diet we handle the tube so much more than we had in the past and the constant handling was causing much more wear on the tube. Instead of getting a hole in the tube every couple of months we were getting on every week. Each time the tube had a hole, the tube needed to be cut. This picture is from yesterday morning when Kevin used the peg tube for the last time.

C was not at all happy to be back in the hospital. I have no idea why this picture is so small but you can clearly see her expression of "what in the world is that bracelet doing on me?"

Oh my goodness. IV drama and trauma all over again. This poor baby just cannot get a break. Even when I insist and and receive the special IV nurse for C, the nurse still has an impossible time getting a good enough vein in C. Fortunately she only had to poke her twice but unfortunately, the nurses had to bring out the papoose board and strap her down. C is so freakishly strong and she fights, I really think she is more terrified of being held down that she is of any pain associated with the IV. Cannot say I blame her as I do not like to be held down either, but her screaming scares me half to death because all I can think is how stressful this is on her heart. Poor baby was so tired after fighting the IV that she just passed out (it was also nap time). She was screaming so hard and so long that her nose was purple. I rarely ever see C blue or purple. For some reason she just generally has pretty good color, even with her low sats but when she screams, which we do not let her do, she shows us just how sick she really is. I feel so awful having to be a part of the trauma but I really do not want her to go through that without me. The best thing about the IV, the nurse actually got a really good vein and she was able to draw blood through it so C would not have to endure another needle stick to draw blood for the blood work that needed to be done. Or so we thought she would not need to be stuck again.

This would be us, waiting and waiting and waiting so more. Apparently the blood sent to the lab the first time came back with all kinds of crazy things. So, after looking at all the stuff they decided to do another blood draw. I do appreciate the staff being extremely cautious with C. However, to further traumatize her by sticking her again, I am not a fan of. Well, the nurse was able to draw blood off the IV again. Yay! Thanks goodness. But after another hour the lab still showed really skewed numbers. Seriously. Here I am starting to panic because I am thinking I have completely messed up her system with changing her diet again. I am just sick with worry and panic. Well, come to find out, after the third time doing a blood draw, this time with another stick (not off the IV), we learn from the anesthesiologist of all people that the lab messed up the blood work twice. There is nothing off with C's blood work and there was no reason to draw more than the first original sample. I think the anesthesiologist thought we would be furious and in some way we were but what is even more sad to me is that this is the normal experience for us at this particular hospital. Little errors along the way that end up making us wait really long periods of time. I am glad they have not been huge errors because that I would not stand for but I just could not summon the energy to be really angry yesterday. I just wanted the whole thing over and done with so we could go home.

C was amazingly good. Outside of the IV trauma she was pretty chill. She did not complain over much about not eating or drinking and was just hanging with us. She did try to get us to remove her IV several times. Even sticking her hand out to Pappi as soon as she got there. I thought my mom was going to burst into tears and rip the IV off, that is how effective C is with her pout. Finally, everything was sorted out and C went back for her, and here I am not kidding, 2 minute procedure. She was supposed to go back at 1:45 and did not go until 4:15pm. Awesome. And yes, it only took 2 whole minutes until the I doctor was back with us telling us everything was good. C did awesome and was in recovery and should be up and able to leave shortly. She was in recovery about 20 minutes total and then she was ready to leave.

As soon as the nurse told us we could go, we got C dressed and up and out of there. She was so excited to leave she was running to the door. I finally had to make her sit down in her stroller before she fell over, you know she just had some sedation and all. Silly girl. Now C has a MIC-KEY button and we have a whole new realm of things to learn and worry about. But, at least she does not have to do all this again to replace it. Next time, she can do have this done right in the doctor's office here in Fort Myers. Yay!

On a side note: All these pictures are courtesy of Kevin (so, thank you honey!). He took them all with his phone. I have two really nice cameras and yet I never seem to take pictures. I am the world's worst picture taker.

The Diet

2011-06-20T11:29:00.001-04:00

Today is day 30.

30 days of Carolena being free of the feeding pump.

30 days of minimal vomiting.

30 days of no overnight pump feeds.

30 days ago I reached my absolute breaking point. I was fed up, frustrated and just completely over C's vomiting, the problems we were having with getting her liquid food (Vital Jr.), the pump feeds, the overnight pump feeds (where cords get wrapped around necks, med ports blow open leaving fluid to go all over the place and 2:30am vomiting), and C's total lack of tolerating any food at all.

I follow the journey of several other HLHS children, one who is a true warrior. I first started reading his family's carepage when I first found out about C. I poured over all the entries in the journal. Looking, no searching, for how to put this new existence together. I found such strength in this family and this child, I just knew we could do this journey as well. Two months ago, I noticed a post from this family speaking of the diet they use for their child. I was curious about the diet, having read their entire story I knew this child had struggled and suffered many (and more) of the same things C was dealing with. The reflux, the vomiting, the lack of eating or drinking, you name it and C's issues where very similar. So I asked this mom what diet she uses as her child was doing so well, so well in fact that the child was no longer using any GI meds at all and many of his GI issues have been resolved.

This very kind mom took the time to email me back and described in detail the very diet she uses with her child. For the very first time, I felt there may be some hope of us and C. I can not even describe how grateful I am that this mom took the time to chat with me by email, offering support and even more importantly, the knowledge of having been there and done that.

I made the decision (after speaking with Kevin, C's therapy team and C's 6th, yes 6th, GI doctor) to try this new diet.

I was scared.

I could say I was nervous or unsure, and yes I was, but mostly, I was scared.

C has never tolerated change in her diet. Her body just does not seem to adapt well, she eventually levels out but it takes a long time to get there, with lots of vomiting which puts me on edge because she can still aspirate. Plus, I was not ready to give up all hope that something may help her. All along we have heard that when C reaches this milestone or starts doing this particular thing she will be better, her reflux will be better, her vomiting will decrease or stop...but so far nothing. Not one thing has made the difference.

Putting all that aside, we finally made the change from her liquid diet to the blenderized diet.

And of course C did not tolerate the diet at all. She vomited for 72 hours straight. And not just once here or there, she vomited every couple of hours, every single feed, every single thing that went down came right back up. It was awful and horrible and C was exhausted. By day 4 I was in tears and so down that I almost quit the diet. But, I decided to go for broke. I originally started the new diet by trying to faze in the new diet while slowly fazing out the old. That did not work...at all.

Day 5 came and I was more determined than ever to give this diet a chance. I wanted C off the liquid feeds, I wanted her on a more normal diet and I wanted her off the overnight feeds. I switched her completely over to the new diet and stuck it out. The next few days C showed a small amount of improvement, not enough to convince me, but we kept going because she was not getting the overnight feeds and I was so adamant about not going back to overnight feeds. Days 6-10 were okay. Day 14 and C turned the corner. Even now I am still amazed. I still have trepidation about this new diet but I am slowly beginning to believe this may work for C.

Day 30 and she is happy, active, seems to be gaining weight (definitely not losing it) and is acting her normal self. She is pump free and loving it. Better yet, she is no longer on overnight feeds and even better her vomiting is way reduced and is even predictable (down to once a day, in the morning, first feed of the day) and there is hope she will stop vomiting all together). I keep waiting for the down side. I keep wondering about her weight, is she gaining enough. I keep wondering if we are messing up the delicate balance in her system, is she getting too much fluid, too much of this or not enough of that vitamin or mineral. I keep wondering what will happen if this diet shows for some reason it does not work. We have all been enjoying the positive side effects of this new diet and I do not want to have to go back to the way it was.

The blenderized diet that I follow for C is the one that I received from the mom I mentioned above. She received the diet after contacting and working with the Cincinnati Motility Clinic. She could not say enough good things about this diet and the way is has helped her child. The only alteration I have made as far as what goes in is that I boost C's caloric intake to around 900 calories with an additional tbsp of oil and an addition of 1 tbsp Scandical (calorie booster). Otherwise, I follow this diet exactly.

The Blenderized Diet

6 tbsp dry cereal (oatmeal works for C)
3 tbsp corn starch (thickening agent)
2 tbsp oil (any kind, but I use Avocado oil)
1 tbsp Scandical (calorie boost)
1/4 tsp salt
4 oz formula (we use Elecare, eliminating any milk allergy risk)
1 4oz jar high calorie baby food (100 calories or above)
1 4oz jar high in Vitamin A baby food (over 100%, such as carrots, squash, sweet potatoes)
1 4oz jar high in Vitamin C baby food (at least 45%, such as apples, pears, peaches)
1 2oz jar baby food meat

Mix it all together and break into 5 feeds. We do our feeds as such: 7am - 3oz, 11am - 4oz, 3pm - 4oz, 6:30pm - 4oz, 9:30pm - whatever is left). I do each as a 30ml bolus feed, waiting a couple minutes in between each 30ml bolus feed for a total feed time of approx 20 minutes. My mix usually makes around 16-17 ounces of food. Each food feed is followed one hour later (after feed is completed) with 120ml or 4 ounces of liquid (with total liquid intake being 600ml or 20 ounces, I use a half/half mix of Mott's for Tots Apple Juice and Gatorade).

This diet is a super thick, gruel type consistency, g feeding tube diet. The diet is suppossed to be super thick so not mixing the liquid and food is crucial to success. C still does not eat or drink anything by mouth but she is trying and is liking it better now that we are teaching her that food and drink is not her enemy. Once she knows food and drinks do not hurt her tummy and she will not vomit I am really hoping she will catch on to the eating and drinking thing. As long as this diet works for her, I am happy with her just trying food, keeping her feeding tube and getting her nutrition that way. I do not want to go back to forcing her to eat, or feeding her 12 times a day or pump feeds. I want her to learn that eating is fun and food is yummy, not just something she has to do to survive. Other positive side effects have been consistently more wet diapers and although she still takes Miralax every day for constipation, etc., her bm diapers are much more normal as well.

I think we have finally found something that works for C. I will know for sure once we see GI and cardiology again. I am keeping everything crossed and praying like crazy that we can return her feeding pump once and for all and that we have finally stumbled upon the first step to getting her eating and drinking for real.

A Day in the Life

2011-06-08T10:46:00.000-04:00

Living with a child with severe, complicate CHD's is always stressful and the daily grind does nothing to relieve the pressure. Considering the schedule we keep, not just for Carolena, but for the boys as well, it is quite amazing that Kevin and I are still somewhat sane. The best part about our day and schedule, there is never a break. I understand now what the doctors were trying to tell me back when I was pregnant. So, we try our best to have some fun in between and have learned to be very proficient and efficient in time management. Unfortunately for Kevin, this does not come easy for him. Myself, on the other hand, being as though I am anal and somewhat OCD, the time management comes easy. But, it is not always enjoyable. There are days when I just do not want to get out of bed to face what I know the day will be. Fortunately, at this point, Kevin and I seem to hit our bad days at opposite times. The one thing that seems so baffling to me is that even with all we do, we are the lucky ones. Many other parents with CHD children have to juggle and manage so much more than we do. I feel blessed and cursed all at the same time. Such a weird feeling.

Thanks goodness summer is finally here!

With the boys out of school, the time restraints are a little eased, still the same as far as C, but we do not have to rush quite as much as the boys do not need to be at school. The whole not being at school really helps us out. School just throws a whole new element into the schedule.

When summer ends, as I am so sad to know it must, I am so not looking forward to returning to this -

6am - Kevin gets up, gets ready for work
6:30am - Kevin gives C her meds, I get up and start getting ready, Kevin wakes the boys
6:45am - Kevin gets breakfast for the boys, dresses C, gets C in high chair to feed
6:55am - Kevin feeds C, and refeeds her and generally tries everything he knows to stop her from puking
7:20am - I get to kitchen, help get boys finished for school, get my stuff together, help clean C and get her dressed in new outfit as she has either vomited or had a blow out diaper and get her 8am meds together
7:25am - get frantic because if we do not leave in the next 5 minutes we will be stuff in ridiculous traffic and the boys will be late for school, all the while going this should be a 10 minute drive at most, we live 6 miles from the school
7:30am - fling all my stuff in car
7:32am- run around like crazy trying to get all 3 kids in the car and seat belts and car seats buckled, this usually means I am very loudly speaking to the boys to quit watching the garbage men, or butterflies or whatever else has caught their interest and GET IN THE CAR
7:35am - hurry up and back out, trying hard not to hit Kevin as he is getting into his car, and get to the road as fast as possible so I can hopefully not get behind the very frustrating nice person who likes to come to a complete stop in the school zone on the main road and let 5,000 cars and buses turn in front of them. Even more frustrating is that the school zone is completely pointless as there is no cross walk, no bus stop and not even a crossing guard...it is just a way for the whiny people in one subdivision to slow down traffic on the main road so they will not be late....GRRRRRRR...
7:53am - wait at last red light to cross street and pray like crazy that the car line at the boys school is still going so I do not have to walk them in (thus getting C out of her car seat as well) and have them be late to school for the 1,000th time...UGH...
7:56am - drop boys off in car line and immediately switch radio station to non kids music because there are only so many times I can listen to the animals in the animal farm on Kids Place Live (xm station) before I begin beating my head against the steering wheel.
8am - get into my garage at work, get C out of car, into stroller and get into office
8:05am - get into office, give C her medicines, torture her by making her stay in stroller until time to give her fluid
8:30am - give C her fluid, pray like crazy she will not vomit and have cup at hand to catch said vomit when it does come up.
8:50am - finally get my computer booted up, phone calls checked (very fortunately I do not have many people call me), check email and generally start my work day
9-10:45am - C plays, tries to talk on the phone when I am on the phone, pulls out all her toys, yanks on all my computer wires, turns the copier on and off 5 million times, pulls all her diapers and wipes out, runs around like crazy, climbs up on my desk, tries to type on my keyboard, hits the speaker function on my phone 10 million times and laughs each time at the noise the phone makes
10:50am - I clean up her mess
10:55am - C goes back in stroller
11am - I feed C while she attempts to watch Mickey Mouse clubhouse on my phone which seems hit or miss depending on whether the people at Sprint are actually working that day and are keeping the service going so the show will play without much buffering...really
11:30am - done feeding, if I am really lucky C has fallen asleep but not usually, my luck has apparently decided I am not worthy of it so it has fled.
11:30am - I get to eat lunch, in my office, at my desk, then I do some more work
12:20pm - I put C back in stroller and give her fluid, saying lots of prayers she will not vomit or have another blow out diaper
12:50pm - I get ready to go for a jog
1pm - C and I hit the road, well sidewalk actually, and go for a jog...yes, in June, in Florida, at 1pm...apparently I am crazy and did not know it, pray like crazy C will not vomit, have cup at ready
2pm - after sweating like a pig and about collapsing from heat exhaustion, I get my sorry self back in the car, go back to work, get changed and back to office to do some more work
2:30pm - give C her medicine
3pm - C back in stroller, feed her again...try the stupid phone for Mickey..again
3:30pm - yay! I get to eat a snack
4pm - leave work, pick up boys from school and head to tennis, ask about their day at school and get simple, one word answers in return
4:20pm - get to tennis, give C her fluid
4:30-5:30pm - watch as the boys play tennis, or learn or practice or whatever they do, pray lots that C will not vomit, have cup handy just in case
5:45pm - oh home, I get kids in, boys go to shower, then sit down to do homework, I try to fit in the second half of my workout, tell the boys 3 million times to get in the shower, not to take 20 minutes in shower, get dressed after shower, sit down and do their homework, watch out for C, shut the doors without getting C's fingers caught, dodge C under my feet as I exercise, tell C 3 million times to not touch the tv, tuner, vcr or any of the other electronics in the media center, quickly snatch remote away from C, tell C for the 4 millionth time to go play with her toys on the mat, finally give up and have boys come play with her, get dinner started, around here is when all of C's meds for the next day get made
6pm - I will say this is the time Kevin gets home, but there is much debate about that in my house, it usually is closer to 6:30, sometimes 7...just saying...
6pm - C gets medicine
6:30pm - C back in highchair for dinner, Kevin feeds her
7pm - we eat dinner, yeah, I shoot for 6:30pm but that just is not realistic anymore
7:15pm - Kevin gives C her bath while I clean the kitchen
7:30ish pm - Boys go to bed, sort of
8pm - C gets her fluid and she goes to bed, sort of, I get my lunch together for the next day, C's stuff together for the next day
8:30pm - I finally sit down on the couch, Kevin maybe here as well...depends on whether the children are actually asleep or not
9:30pm - Kevin very carefully gives C her last feed of the day, do not want to wake her up
10:15pm - I give C her medicine
10:30pm - either I or Kevin will give C her fluid, depends on who is still awake at this point
10:45pm - finally, blissfully asleep...ahhhhhh...until around
2:30am - which is when all of my children believe is the time in which they must wake up with some complaint, fortunately not all 3 at the same time and on the same day, but we generally are woken up by at least one of them at night...mostly it is C standing up in her pack-n-play screaming at the top of her lungs because she has lost her paci and cannot find it and only mama or daddy can get it for her
6am - the alarm goes off and we get to do it all again

This is just Monday. Throw in Todd's soccer on Monday nights (in addition to tennis), my group meeting night (Monday as well), Kyle's cub scouts (on Wednesday), mine and Kevin's meeting (also Wednesday), Junior League (Tuesday nights), Kevin's late meeting at work (Tuesday nights), and any of the various and sundry doctors and/or therapy appointments for C and the whole thing changes yet again. And I am sure I have forgotten to mention half the stuff we do. It is no wonder people are afraid to enter the chaos that is my house and my life. Sometimes I wonder where I even get the time to worry about C and all her issues. Yet, it is still there. The constant worry.

Oh, by the way, I do not drink coffee.

Nor do I drink Diet Coke or anything else with caffine.

Maybe I should check out going on meds. Hmmmm.

The Fundraiser

2011-06-01T10:20:00.000-04:00

5K Walk/Run Fundraiser

Downtown Fort Myers

July 23, 8am

Some friends of mine are putting together a fundraiser for Carolena. My husband and I are still a tad uncomfortable but are very grateful we have friends who care enough about us and C to go through all this effort to raise some money for Carolena's medical expenses.

Kevin and I have been back and forth on this. We are both much better at helping other people than we are at accepting help for us. We know and understand how hard everyone has been struggling the past couple of years. However, at some point we had to let go and accept that people want to help us and accept that help as given.

I am very humbled and grateful for this gift two of my good friends are giving to us.

All the details have been posted on FB, but for anyone who is not on FB or who does not regularly check FB, I am looking at you JJ :), here is the information as well.

To register for the race (should you be so inclined to be in Fort Myers that day...the weather is gorgeous, just saying...) go to http://www.therunshoppe.com/. You will see C's race listed on the side. Click on the logo and then you can click on the link and register. You can also click to make a donation if you are so inclined.

To just make a donation without going through the main site, you can click here www.active.com/donate/BabyCdonations.

And I am still teaching myself how to run. I got the jogging stroller and C and I have been going out during my lunch hour 3 days a week. I can now jog over 30mins straight through which puts me around a distance of 2.6 miles. I still have a bit to go before I can run a full 3.2 miles but I am slowly getting there. I am still planning to jog the whole 5K, including going over the bridge (twice!) while pusing C in her stroller. Very dauting task for me but all I do is keep thinking about how much C had to struggle through 2 open heart surgeries and recoveries all before she was 9 months old and I can feel my resolve get stronger. I will do this, with C, in her honor. I have said from the very first day I found out about her heart that if she would just keep fighting I would fight for her, every single day. But, you know, the funny thing about all this running/jogging is that I think I may even be starting to enjoy it...how did that happen?

Almost Back to Normal

2011-04-05T09:24:00.000-04:00

Yesterday I took C back to the orthopedic doctor to have the last of her sutures removed. When the ER doctor tacked her finger back on he used three looping sutures. I thought for sure we would have a huge issue with removing those suckers and C, of course, would freak out. I asked Kevin to go with us to the appointment, figuring I would need Kevin to help hold and keep C calm. For those not familiar with C's condition it can be a little freaky to watch her turn blue when she is screaming. So, to try and avoid the chaos I am sure would ensure when C freaked, screamed and turned blue, I had reinforcements.

And wouldn't you know...

When the time came to actually remove the sutures, there was only one left. The other two had already fallen out and it took the assistant all of 3 seconds to remove the final one. C did not even have enough time to work up a good scream at being messed with before the whole thing was over. Even she was a little stunned at how quick and pain free the whole process was. She still whimpered and whined a little because she had to get a little extra love. But I can't really blame her as her finger, while much improved, still looks pretty bad.

The doctor did confirm that the end of her finger will stay attached and will live. Yea! And again reinforced that had the end been completely cut off, she would have the lost it. The crush damage to the finger is too extensive for the end to survive and the doctors rarely, if ever, actually reattach a complete amputation. The nail will most certainly come off completely and we are still in a wait and see on whether she will get a full, normal nail back.

This whole situation has been so weird for me. Here I am writing about a normal childhood injury/accident about the one child of mine who is anything but normal. I guess this is what I get for trying to treat her as normal as possible. Ha ha. However, I would not change it. C, at this point, has no idea she is not normal, that she is any different from any other child. To me, it is amazing.

The One About C That Has Nothing to Do With Her Heart

2011-03-30T09:55:00.000-04:00

Sunday was such a lovely day. The weather here, as usual for March, is just perfect. I can almost forgive the 6 monthers and tourists their insatiable desire to vacation here, clogging up the roads, restaurants and doctor's offices with unbelievable traffic, when the weather is so beautiful...almost.

So, we were getting ready to go out on the boat. Due to our completely crazy schedule with the kids we do not get out as much as we would like. Well, that and the fact that the price of gas is totally insane. I know, all the people who live with snow are sending me dirty looks and rolling their eyes right about now.

Anyway, we were all getting ready to go. The boys were getting their bathing suits, shirts, shoes, etc. on and getting their back packs loaded up. Pretty much chaos. For all who know us and spend any amount of time with us, you pretty much know that we live in a constant state of chaos. Mostly because the boys are pretty lively and apparently my daughter has no fear. Ahem.

In our house, the doors to the rooms in which the little girl may not go remain shut. She is very quick and very sneaky so you must be quick about getting in and out of an area she in not allowed in. One such area where she is not allowed is the boys' room. In exchange for letting them have and play with the 1 million teeny, tiny Lego pieces they insist on having, they must make sure their door is closed. Cannot have the little miss choking on a miniature Star Wars Lego light saber. Oh how the force would not be with us then.

Todd, doing more or less exactly what he is supposed to do, goes to slam the door bedroom door shut. We do not allow door slamming in my house. There are way too many little fingers and toes around. Unfortunately, this time one did get caught. Little miss had her hand on the door to keep her brother from shutting it in her face. Todd, not looking, closed it right on her finger. Her pinkie finger on her right hand. On the back side of the door, right above the hinge. The absolute worst area to get your finger caught. Ugh.

As I walked over, C was not screaming or hysterical, just crying a little, I thought man, what is he doing. He knows we do not slam doors. I had no idea that C had her finger caught that bad. Fortunately for C, he immediately opened the door, never really completely shutting it, when he heard her cry. Had he shut the door completely, her finger tip would have been cut off completely and more than likely, no way to reattach her finger. When I got to her and finally looked down she was sitting there, holding her hand and there was blood. Did not look like a lot at first. Then I got a good look at her hand. Oh man. I freaked. The end of her pinkie finger was dangling at a very weird angle. I thought for sure it was completely severed. At the time, it did not really hit me. I freaked thinking about her heart. Could her heart take this kind of traumatic injury. The one thing I worried the most about was the one thing that I did not need to worry about. Thinking back on the event now, I cringe a lot, turning slightly green while my stomach turns over. Ewwwww.

After picking her up to find Kevin, and of course trailing blood all over the house, we wrapped up her hand and put ice on top of it. We quickly got her to the ER. The whole time, she was calm, not really crying and just sitting on Kevin's lap. By the time we got to the ER, thankfully a 10 min drive from my house without speeding, yea me, she was hurried back immediately and the ER pedi doc started right away. We had already talked to her cardiologist and because she did not need to be put under any anesthesia he told us treat her like a normal kid. Really?

So they did. He shot her finger with lidocaine and sutured her right up. Essentially reattching the end of her pinkie figner. Then we were told we would have to wait and see. C did fine. Of all the things I have seen with C and all the procedures she has had where I have to hold her watching her finger being stitched back on is by far one of the hardest, most stomach turning things I have watched. I do not know how the doctors and nurses do this every day.

She had a follow up with the pedi ortho surgeon Monday and he actually gave us even better news. Based on what he saw in the xrays, C's injury was actually at the best possible spot. The door actually caught her finger right above the nail bed. All the crush pressure/damage was on the top of the nail and forward. He said the most devastating part of the injury is the force and pressure of the door closing on that part of the finger, saying the crushing effect is so, so bad. Although C almost completely lost the end of her finger, she will be fine. The ortho said little kids rarely get an infection (of course we have to be extra careful with C) and because she got smushed above the nail bed she will more than likely grow a normal nail back. Even better not only will she not lose the end of her pinkie (it will reattach just fine) she will more than likely have full feeling as the nerve in the end of her finger will regenerate. Again, because she is so young.

So, there you have it. A hospital visit and an update about C that has absolutely nothing to do with her heart.

I'm not sure I am going to survive my children being young.

Just for the record, Todd is fine. He felt and still does feel really bad but he knows we know it was just an accident. And C is doing fine. She came through this whole ordeal with hardly an issue. She is using her hand and still crawling around and pulling up on everything. She barely recognizes there is something wrong with her finger. The only time she gets agitated about it is when I change the dressing at night after her bath. Then she sees it and starts whimpering a little and holding her hand out to me like she wants me to kiss it. Once the dressing is back on, she totally forgets about it and keeps going. Should be interesting next Monday when ortho removes her sutures. Ugh. So not looking forward to that. I think this will be a two parent job.

I Got the Shoes

2011-02-14T12:07:00.000-05:00

Well, I have the shoes. I went to a store that has sales people who really know what they are doing when it comes to recommending and fitting you for shoes. I explained to the very nice lady who was helping me exactly what I was looking for and the above are what I got. I had no idea real running shoes cost that much but I figure if I am going to give this running thing a fair shot I need to invest in shoes that can help me do it. Things I am already learing from this running experiment...you must get shoes that are a 1/2 size to a full size larger than what you normally wear. Ok. Had no idea why the shoes she was having me try on seemed so big but she explained you want them to fit snug over the top and instep but loose in front so your toes have run to move around and your foot can expand. Sounds good to me. Makes sense. She tried to sell me some that were pink...I politely declined those.

The Honeymoon

2011-02-08T10:04:00.005-05:00

We have officially entered the pre-Fontan honeymoon period with Carolena. She is doing very well cardiac wise and will have little cardiac oversight or intervention over the next year, give or take a few months. Of course, C must behave. She needs to continue to stay healthy (no sickies), gain weight, maintain her sats and reach her "normal" baby milestones and not yank her g-tube out.

The emotional high of having a "break" from all of the appointments and knowing we are now in a holding pattern, with C dictating the next step, is incredible.

C saw her EP cardiologist on Jan 28 and received a glowing report from him. Her arrhythmia is continuing to remain calm with her current medications. She continues to have slight increases of each medication based on her weight gain but there are no other changes. He does not need to see her back for 6 months.

She then saw her regular cardiologist on Feb 3. He is really the doctor who is managing her care and continues to monitor all of her structural defects. C had the full work-up with echo and all. She is really starting to not like the echo at all. In the past she has been pretty tolerant but not last week. She got about half way through and totally lost it...and all of her feed,all over the table and floor. Ugh. Fortunately her cardiologist was able to see enough of what he needed from the amount the tech was able to record. He is really looking at the amount of leakage from her valves (minimal...he cannot even hear it when listening to her...yea!) and making sure the connection between her confluence and atria (allowing the blood to flow to and from her lungs through her pulmonary veins) is remaining clear and unobstructed. The obstruction of the pulmonary veins due to membrane growing around the surgery site of connection of confluence to atria is what led to her 2nd OHS last May. He was so pleased with Carolena he as well does not need to see her for 6 months.

To say I was stunned is an understatement.

C has a single ventricle with heterotaxy. Medically, she is not supposed to be doing so well that we can go 6 months between cardiologist visits. But she is. And I am beyond amazed and ridiculously grateful and thankful.

But just like a real honeymoon, there are always little issues that get in the way of your enjoyment and complete relaxation. The airline we were flying to my honeymoon conveniently left my suitcase at one of the airports along the way and I did not have any of my clothes for 3 days of a 7 day honeymoon. Awesome.

As well, C is still vomiting (as evidenced above with her latest experience with the echo) and is still not eating anything voluntarily. Oh could I go on and on and on. The feeding issues are the absolute worst. We have dealt with some pretty bad stuff so far. 2 OHS's, a deadly arrhythmia, possible heart transplant (and lungs too!), effusions, unexplained fevers and ridiculous medicine schedules but nothing, and I mean nothing, compares to the absolute sanity sucking, total morale defeating want to drive you crazy and pull all your hair out then the stress of trying to get your medically fragile child to do the most basic instinctual thing of all....eat. I could literally write pages about how this is completely sapping all the joy out of knowing how well C is doing right now. C has had every test(some two and three times), seen 5 different GI doctors, I cannot even remember how many speech pathologists and yet she still will not eat. She shows interest in food. She will put anything and everything in her mouth and even some food items but will not eat. She does not show us any indication of ever being hungry or desiring food. She does not drink anything at all. We keep working with but to no avail. Nothing is working. Not the tests, the GI doctors, the speech pathologists. Here is the thing that drives me absolutely batty...I know several other children with single ventricles and Glenn shunts with lower O2 sats and have been ventilated much, much longer that C ever has and they eat fine. Just fine. May need some supplemental or calorie boosts here or there but they voluntarily eat and drink. Showing interest and desiring the bottle/sippy/cup and food. Oh my. Seriously.

Unlike the luggage experience on my honeymoon in which there was an eventual happy ending, we are far from the happy ending with C.

Kevin and I are seriously considering finding the best GI people and feeding programs and doing an eating boot camp with C. I cannot even tell you how defeated I feel that C went from getting her g-tube as supplement purposes only, to now being totally g-tube dependent. We just want answers. Something. Anything to put us on the right path for eating.

Can you just feel the stress?

Well, I have decided I am going to try something new (for me at least) and do my best to turn all this frustration, anger and stress into something positive. I have started to exercise again and I am even attempting to learn how to run. Yes, I am not kidding. And right away I have learned many things from my first attempt at running yesterday. One, I really need real running shoes. Two, I am a horrendously bad runner. I am bad in the way of barely picking my feet up off the pavement, shuffling along, big butt bouncing (and not nicely), embarrassing to watch but cannot look away bad. Three, I need real running shoes. Four, I need a coach or someone who can help me learn. Five, I need real running shoes. Maybe one day I will look back at this and laugh...oh how funny was I, hahahahaha. But I am not feeling it at this point. Attempt number 2 will be tomorrow, maybe I will let you all know how it went.

Something else new I am trying (you know, to relieve stress) is joining a women's group. My counselor periodically puts these together for women to come together and do group counseling. She has been suggesting I do this for about 2 years now and I have resisted. I am just not a good sharer. However, I am at a very low point and really feel I need to make changes in myself and in the things I do. My first attempt at the women's group was no where near as bad as my first attempt at running, so maybe this will stick. Mostly I joined the women's group because honestly, I have no close female friends. I apparently have issues when it comes to having female friends. I am hoping this group will be able to help me see where I am wrong and how I can change things to be a better person so women will want to be friends with me. Don't get me wrong, I know lots of women. And I have lots of friends. But I do not have the BFF friend. The one or two ladies who you share everything with. Who know you better than you know yourself. Who you can call on a moments notice and without saying a word they know what is wrong. BFF's who want to spend time with me and do things with me. I envy all the women I know who have this and I am searching for the reasons why I do not have this. I am lonely. And I have decided I need more. A lot more.

I know the next question will be, where do you find the time. Well, I don't really. I am just pushing things around and shifting other stuff. Like robbing Peter to pay Paul. I am hoping this will all lead to a happier mama, happier wife and happier friend. I am over being stuck in a rut. I have way too much stress with being a full time mom, having a full time job, taking care of the house, the finances and in general being expected to pull off graciously and beautifully being the all powerful Supermom.

The changes, the wanting to be different, sound pretty self serving. In a way it is. I will be much happier if I can see progress in myself. But I am also doing this for these wonderful, special people too.

I put all the pictures at the end so you have to read my whole, long, boring post before you realize there are pictures here too! My husband deserves to be here too, but he conveniently does not ever let me get a picture of him.

Prayers are Working

2010-11-12T11:48:00.004-05:00

Carolena is doing well. Very well as a matter of fact. Her eating is still atrocious and she is still vomiting a lot but her heart...her heart is doing well.

The past few weeks we saw the GI doctor and both of C's cardiologists.

As usual, the GI visit was useless and unhelpful. The doctor told us C's issues with eating are behavior related. Ummm, ok. So C waking up in the wee early hours of the morning from a sound sleep and puking everywhere is a learned behavior? Really? It has been a really long time since I went to medical school (you know, like never) but I really don't think my 15 month old daughter is saying, yep, now it is time to wake up and puke everywhere just so mom and dad have to wake up with me. Not seeing her retching and dry heaving as a conditioned learned behavior to attract attention either. Oh well, again, what could I possibly know since I do not have an MD after my name.

C is back in feeding therapy. Well, kind of right now. I am still waiting on the therapist to do her final report and then we will see which type of services C will be getting. I am going through the Early Steps program as my insurance does not pay for feeding therapy. Early Steps is an early intervention program for children birth to 3 years old who qualify based on medical necessity. C has been seeing an infant/toddler development specialist now for the last month and she is the one who called in for a more advanced speech/feeding therapist to help with C's eating. Of course, both ladies are still thinking the same as us, C does have some behavioral refusal not due to aversion but due to some medical issue with her guts. So, we will see how much further we go until we are all insane.

End of October C saw the electrical cardiologist for her 3 month check. She had a 24 holter monitor and then another ecg (ekg) at the office. The EP doc is very happy with where she is. He is seeing no arrhythmia activity on the holter and thinks the current medications she is on are doing a fabulous job controlling the arrhythmia. I would really have liked to hear him say that he does not think she needs the meds anymore but I can't always get what I want. I did get a small reprieve though in that the EP did allow us to cut back to giving C her one med 3 times (every 8 hours) per day versus the current 4 times (every 6 hours) per day regimen she was on. Having to get up at 12:30am to give her meds every night was really getting old. At least now we have one fewer sleep disruption...yay! The course for the EP is pretty much status quo until she is ready for her Fontan surgery between 2 and 3. He did say that once she gets to the time to do the pre-Fontan heart cath he would consider taking her off her meds. He wants to get the most accurate info during this EP study during the cath. Since this will not be happening for at least a year, I will not worry about that right now.

Even with the good news from the EP doc I was still really worried about C's appointment with her regular cardio yesterday. With the slight schedule change in C's meds and her being sick on top of everything I was just totally freaked out (and exhausted). C got some tummy bug that had her vomiting (even worse than usual) and diarrhea so bad for almost an entire week. I at first was not sure if she was sick but then I got it too. And my mom. And my boss. I guess C is just a little giver, what a sweet child she is. Anyway. Fortunately she did not run a fever (can trigger her arrhythmia) and with her g tube we were able to keep her hydrated. Otherwise she would have been in the hospital. Poor baby felt so bad. She would just stop in the middle of what she was doing and lay down. So not like her and also indicative of heart failure (taken in conjunction with lack of eating, increased vomiting and general lethargy). Nothing is ever easy or straight forward with C. With her feeling so poor and me being sick two weeks in a row and my car still having issues and Kevin being out of town for the better part of two weeks...my world was really not right.

But, as with all things, prayers are bringing us through. As I already mentioned, C saw her regular cardio yesterday (does all the structural/defect stuff). She got a great report from him. Holy cow! According to her cardio she is doing awesome. Her echo looked great, her function is good, her flow is good, her confluence (the pulmonary vein stuff) looks good. He was amazed at how big she has gotten and just giddy with how right on developmentally she is. So far she continues to be on the top end of the spectrum for babies like her and we are beyond blessed and grateful. We do not need to go back (unless C has issues) for another 3 months. Hurray! He cleared us to travel and said "we absolutely have to go" and see all my family in Alabama. Of course we will be on super, heavy duty hands off, no sickies, no holding mode but at least everyone will get to see her. For that I am truly happy. Her cardio also delivered some other good news for me personally...he said he likes to have the Fontan done around 2 1/2 to 3 years of age (on the older end of the spectrum). Even though C will be more aware I am really ok with her being a littler older and for purely selfish reasons I want her around for all the holidays next year as well. If they did her Fontan right at 2 (August) she would more than likely miss all that stuff. I will not go into too many details but the Fontan will be extremely hard on C. There will be a lot her body has to do to adapt to, especially the artificial circulation, and there are a lot of kids who just don't make it. But, right now, C is doing remarkably well and we are going to spend the next year just being and doing.

It's Been Awhile

2010-11-01T11:24:00.002-04:00

There are so many things I have missed posting and wish I had done at the time of the event, but life has been so ridiculously crazy I never have time to do anything.

The latest and greatest since C's birthday:

1) We had an awesome party for C. So many friends and family were able to come and celebrate the day with us. C had a blast seeing so many people. I am not too sure what all she was thinking but at least no one was coming at her with anything sharp, pointy and possibly painful. Yay! She did manage to get the icing on her cake all over herself without getting one bit in her mouth. Most post some pictures because she truly looks like she took a bath in pink frosting.

2) We did get to go on vacation right before C's party. We took a week and went to the Keys. The boys had an awesome time as usual...we snorkeled and fished and went out on the boat. They just love having everyone together all day and no stress. Poor boys, having to live with us and all our stress. Love being able to take them away for a bit and let them just be "normal" kids.

3) I was in a car accident on August 5. Yep. Great timing. And guess what, my car is now back in the shop for the 4th time since being repaired initially. I really, really, really detest my insurance company. My car was damaged because some guy thought it would be just fine for him to make an illegal left turn on a red light and plow right into my car. Lovely. I have been fighting with both insurance companies since August and still do not have my car back and repaired correctly.

4) Kyle turned 7 in September. We decided to give him a choice this year on what he would like to do. We let him choose between having a party or asking a couple of his friends to go to lunch, a movie and the toy store. Kyle chose the movie option. Later that night he told me it was the best day he has ever had...so I guess we hit the right celebration for him.:)

5) The boys are back in school and doing well. Some minor glitches here and there but overall they are loving school. I have teacher conferences today with both boys teachers.

6) Kyle is now doing cub scout and tennis in addition to go-karting. Todd is also doing tennis. Between all the kids activities and work stuff and football games and C's stuff we never get a break. We are constantly on the go. I feel like Kevin and I rarely see each other as we rarely do anything together as an entire family. One of us always has to stay back with C as she cannot be out and about too much.

7) We lost the nurse who was taking care of C at home a couple days a week so she is now with me at work full time. We are trying to find someone new but with all the requirements necessary and insurance not paying for anything like this we are having a hard time finding a replacement. Has made it very interesting for all of us. C is now 14 mos old and is very active and mobile and still CANNOT be in a daycare of any kind. And I absolutely HAVE TO HAVE my job. Rock meet hard place. My boss is awesome and very accommodating but eventually we need to make a decision on where we go from here.

8) Kevin's work is still shaky so we are all holding our breathes and hoping things change after this election cycle. He is working way too many hours and has way too much stress and no outlet in which to re energize himself. We really need there to be more hours in each day just to get a break.

9) C did see the GI doctor again in beginning of October and we are still getting the same answers. GRRRRRRR. We are back in feeding therapy but getting the same finger pointing, running in circles crap. So darn frustrating. She also saw the electrical cardio last week. As far as the electrical cardio is concerned she is doing great. The medications are working and keeping everything in check. Her 24 hour holter looked fantastic, nothing to report and her office ecg looked good too. He did say we will be facing a decision before her next cath on whether to take her off the meds prior to the cath to see if they can induce the arrhythmia during the electrical study. If they leave her on the meds and are unable to induce the arrhythmia then they cannot be 100% certain that it is gone. So, that will be super scary but not something we need to do right now.

C is currently puking up at least 3 times a day. She only eats 5 times. Great ratio. But she is still gaining weight. She is currently 20 pounds, 3 ounces. She is back on the charts...hurray! She is just the sweetest thing. Follows her brothers everywhere and is in all their toys. Bless their hearts, they are very patient with her and pretty much let her do what she wants. Sometimes I get, "mama, can you come get her... PLEASE????" but not very often. She is crawling like crazy, standing up everywhere, taking a few tentative steps while holding on, babbling like crazy, and pretty much doing all the things a "normal" baby would be doing...all except the eating. She is now on Vital Jr. and we have tried to eliminate every thing she may be allergic too. We keep trying to "fix" each little issue in the hopes that fixing all the little issues will eventually add up to her tolerating and eating all by herself.

I will eventually get some more pictures up here as well. Have to show how big our little C is getting.

Happy 1st Birthday Angel!

2010-08-19T09:10:00.002-04:00

Well

2010-07-28T14:48:00.001-04:00

That is about all I got.

C did have appointments with the allergist and her cardiologist yesterday. Poor Kevin was gone all.day.long. He left our house at 8am and he did not even see the cardiologist until 5pm. Ugh. Then a 2 hour drive home. He said C was an angel all day and he did get to experience a first with her that he would not have ordinarily been able to see since he is never with her during the day. Yesterday, our big girl finally figured out how to get to a sitting position all by herself. And daddy got to be the very first one to see her do it. Yay!

So, here is the rundown. The allergist tested for the biggest, most common allergens. Milk, soy, wheat, rice, egg yolk, egg white, corn and a few others. She is sensitive to the milk, rice and corn. Ordinarily the doctor would recommend removing these items from her diet but there are several factors to consider: 1) she could be showing sensitivity since the majority of her diet comes from these three things, 2) cost, as the formulas with no milk/soy are really expensive and may not be necessary (see point #1) and 3) we do not want to go upsetting her entire diet all over again. The doctor gave us a prescription for allergy meds to try. He would like to try and control whatever sensitivity she has with these foods (and possibly others) with a medication versus going through the whole process of revamping her diet again. He also does not think she is necessarily allergic to the penicillin antibiotics either but did give us a script for some testing the next time she has a blood draw.

C's cardiologist was super happy with her progress. He actually does not want to see her back for 3 months. I think this will be the longest we will go without seeing a cardiologist since we found out about C's heart when I was 17 weeks pregnant. He was estactic with her mental and physical development and her gross/fine motor skills. Although she did not gain as much weight from last week to this week she has put on almost 2 pounds since this cardiologist last saw her 4 weeks ago. He was very happy with that. As far as the vomiting goes, we are back to GI. Not too sure what we are going to do but will see about maybe tweaking her GI meds for reflux. And I absolutely will not be taking her off her antibiotics again after the cardiologist told Kevin that she could die within 3 hours of getting an infection without having the added protection of the antibiotics. Well. There you go. We can try and switch the antibiotics if I still feel there is an issue but will stay on some form of penicillin as this is the best one to fight the germs they do not want C catching. This also leads to our continued crack down and general hand's off approach with visitors and germs. Which is sad because C gets held by only 3 people. I feel bad for her because she just is not able to get all the loving, hugging and kissing like other babies. But, she is super happy to see other people so that will have to be enough for now.

Overall she is doing great. Her right eye is all red and gunky again which worries me but could be as simple as blocked tear duct. The issues we are seeing now are more for her pediatrician, more general baby stuff. Sometimes it is hard to distinguish.

Still trying to figure out all the stuff for C's birthday. I will be getting invitations out (I am hoping that if I keep saying it, then I will actually get them done). Other than that, we should have a few months break from all the doctors visits. Just need C to cooperate and all will be good.

2nd Verse, Same as the 1st

2010-07-23T15:24:00.000-04:00

We really thought we we clear. We thought C had turned the corner. We were actually past excited and into complacency.

Oh how wrong we were. So very, very, very wrong.

C started vomiting again. Lots and lots of vomiting. She tricked us into thinking she was over this nasty puking thing and that she really, really liked and wanted to eat, not just her solid (baby) foods but her formula as well. And from a bottle. A real bottle.

Again, so very, very wrong.

End of June, going into July C decided she just did not want to eat anymore. She refused bottles and then refused her solids as well. Frustration does not even begin to describe the overwhelming emotions pouring from me and Kevin. Just the week before we got the all clear, thumbs up from not one but two separate cardiologists. C looked great, her heart function was great, her arrhythmia in check, she was starting to slowly come up on her oxygen saturation level. She was gaining weight. We were encouraged.

And then she stopped eating.

And then she started vomiting everything we put down her.

Seriously.

We have seen cardiology 3 (yes 3) more times. Just to keep things interesting (and us on the verge of losing our collective jobs, not really, but only because we have awesome bosses) C has also been to the GI doctor, the pulmonologist and her pediatrician. All in the last 3 weeks. Yes, that is as many doctors appointments and days out of work as you think.

Can you guess what the collective answer has been from all these great minds...what for it...reflux.

No, I am not kidding.

How do you combine stress, anger, frustration and just in general pissed-offidness into one solid emotion? If you figure it out let me know because that is where we are.

Poor C just soldiers right through with a big ole goofy smile on her face. She is truly one happy baby. Us, not so much. We no longer give her bottles at all. She gets all her fluids through her tube. So much for using the tube for only supplemental feeding. We have been given a goal of 900 calories per day for her (approx 25% more than what a normal baby consumes at this stage). I cannot even tell you how lovely that has been trying to figure out just how in the world I am going to get this poor baby to eat 900 calories. Finally have it all figured out but the vomiting is still our enemy.

Not too sure what will happen from here. C's one cardiologist mentioned having to do another heart cath if she continues the vomiting. The major risk for her is aspiration. If she aspirates, she dies. Therefore, we really want to get the vomiting in check. Not too mention that she is losing all those vital calories she needs to thrive. Heartwise, C is doing very well right now. I still really think she is having an adverse reaction to her antibiotics. I have changed the form of her amoxicillian, she gets half a tab crushed up now versus the liquid suspension but she still vomits. When I took her off the amoxicillian for 2 weeks she still vomited but much less. When I mention the antibiotics being an issue all the doctors look at me as if I have grown 2 heads. Each one continues to tell me that the antibiotics are not the problem. C will be going back to cardiology this coming Tuesday. She is also seeing the allergist again for testing. Between these two appointments I am really hoping we can come up with some solution for her vomiting because really, the GI doctor, not so much help.

Yet, in the midst of all this, C is progressing beautifully development wise. She is sitting all by herself. Up on her hands and knees and rocking (crawling is thisclose). She laughs, claps, rolls over, scoots around, starting to pull up to standing, sleeps very well, says mama and dada in connection to me and Kevin and in generall looks and acts just like a normal baby. I know my biggest frustration comes from us truly being thisclose to a more normal life. I'm pretty sure most of my negativity today is coming from the inescapable vomit smell coming from my clothes (as C puked all over me at work, formula and yogurt...such a lovely eau de parfume) and my total lack of sleep. C still gets one of her anti-arrhythmia meds every 6 hours so I get up at 12:30 each night to give it to her (and her monitor and feeding pump continue to alarm). I asked Kevin the other day if he thought my insurance would finally cover at home help for us, just to give us a break at night...maybe if I pretended I was crazy they would listen more :)

Sorry I have not posted more pictures but I did post some on FB yesterday. Right now we are in party planning mode and of course you are all invited. C will turn 1 on August 19 and Kyle will be 7 (yes, 7) on September 3. Parties back to back, wooo hooo!

Thanks so much for all your good thoughts, positive energy and prayers!

A Little Bit of Levity

2010-07-06T13:14:00.002-04:00

My daughter has complex and complicated congenital heart defects with the added bonus of heterotaxy, upper gi malrotation and aspleenia.

For those who are curious the following is what she has:

Structural Defects -

1) Single Ventricle (HLHS - Hypoplastic Left Heart Syndrome variant)
2) DORV - Double Outlet Right Ventricle
3) TGA - Transposition of the Great Arteries
4) TAPVR - Total Annomalous Pulmonary Veinous Return
5) PS - Pulmonary Stenosis (which as of her latest surgery is now technically PA, pulmonary atresia)
6) MA- Mitral Atresia

Electrical Defects -
1) Atrial Flutter - also due to her last surgery

She has had two open heart surgeries, yet not what she was expected to have. She did not need to have an early surgery, actually bypassing the need for a Norwood or even a shunt/banding procedure. She went straight to her Glenn and TAPVR repair at just under 4 months of age. Her second heart surgery was at 9 months of age when her cardiologists detected what they thought was scar tissue but was actually membrane growing around the previous surgery site, causing her head and upper body to swell and fluid collection because her pulmonary veins were obstructed. She has had two heart caths and one abdominal surgery with her LADD procedure to correct the malrotation and an endoscopically placed g feeding tube. She has greater risk for infection because she has no spleen. And yet she has spent far more time at home than in the hospital.

But, she will die because of her CHD's.

I completely understand the issues with my daughter's heart. I know she will never be cured or fixed. She will have to undergo several risky open heart surgeries. She will have to endure numerous heart caths. She will have to sit through endless heart echo's, ekg's and cardiology visits. She will have eating issues forever. She will run the risk of further complications as she gets older and bigger and undergoes more surgeries. She will never be completely normal.

I am steeped in the reality of what my daughter's life will be medically.

I have recently spent a lot of time reading other CHD families blogs, as well as the conglomerate CHD blogs in an effort to find the right extended support system for me. My family and friends are unbelievably supportive but they have a hard time relating to all of what I feel. I was really hoping to connect to other families who are going through similar issues but I have come to the conclusion that I just don't fit in with all the other CHD parents.

Early on, I resisted reading other children's stories and talking to other parents because I was not emotionally in a place where I could handle other people's grief, fear and anxiety. Even more so, frankly I did not want to get in a competitive parenting dialogue about how their children's CHD's were so much worse and how their experience was so much worse. Believe it or not, I have seen this happen. I think it is just human nature. However, I decided to give this support group networking a try. I still have hard time with this some days but I make an effort so I can try and understand what may be in store for us. Kevin is much better than me. He is the one who talks to people and listens to their stories.

I have heard lots of stories now. Some with great results and other stories ending in heart breaking sadness.

I have wanted to connect and share C's story because when I went looking for stories there were very few that offered any hope. Again, I appreciate the reality of C's situation. I guess what I was looking for were stories that had positive undertones throughout the grief, fear and anxiety. Stories of families who have the same wants for their children as I do.

I have several wants for C. Several things I pray for daily.

The main one is that no matter what happens, I do not want C to suffer. I do not want her to be in pain, feeling miserable and scared. When C is called to Heaven I want there to be peace and no pain for her. I want her to be home with us, in her comfy pj's, in her comfy home with her family and no doctors, no nurses, no one to interrupt or make her look at the door in fear.

The second want I have for C is for her to spend as much time at home with us as possible. I have absolutely no desire or need to spend any more time in the hospital than absolutely necessary. I want C to spend all her holidays at home. I want her days at home to far, far outnumber her days in the hospital. I am very grateful for all of the doctors and nurses who provided outstanding care for C but I really have no need to have daily affirmation from them that I am providing the best care for my daughter. I do not need to be best friends with the nurses who took care of C in the hospital. I prefer to be on friendly terms and share updates and pictures when C hits milestones, not have a daily dialogue with medical personnel.

My third want for C is that she know far more people who have no idea about complex CHD's. I want to be able to surround her with people who will not pity her or coddle her just because she has the bad luck of the draw to be born with a broken heart. To quote my dear family friend Carrie, I do not want to raise C as a "cardiac cripple." I want her to know far more "normal" people than medical personnel. I do not want her to fear going to all the doctors she must go to but I also do not want them to be her "best friends." I want C to be as normal as possible and I just do not see that happening if she is constantly surrounded by medical personnel.

I wake up every morning with trepidation for what the day will bring. I wonder if today will be the day that we are hit with a new surprise with C's condition. Will today be the day we hear the words heart failure. Will today be one of the worst days of our lives.

In order to get out of bed every morning, instead of laying there with the covers pulled over my head wishing I could stay in my dreamland where babies do not have CHD's, I choose to add levity to my life. I make jokes or silly comments not in an effort to down play the severity of C's issues or appear to be a moron or to be offensive but because if I did not laugh at some of the absurdity I would absolutely never leave my bed.

Which of course has led me to think I just don't fit in with the other CHD parents.

I am trying my best to live each day. Not just exist or survive, but to actually live without the fear of what will happen next with C. I get side tracked a lot. Just talk to my husband or my boys when I am having a bad day. But, my main purpose in finding an external support system was to hopefully share some of this levity. I constantly feel as though I am stuck in limbo. I have a daughter who for all intents and purposes should not be alive. She has already beaten so many odds and statistics. However, we get treated as if she has nothing more than a hole in her heart that can be fixed with a surgery and we move on. There is no happy ending for C so we must make our happy now, every day.

I will continue to post about C's story, mostly as a record for me and my family. I am not going to feel guilty for the comments I make or the things I say. I will not feel bad for ranting and raving about having a bad day with C when everyone else tells me how grateful I should be she is alive and with me. Trust me, I know first hand how lucky we are to have C with us and doing so well. I absolutely believe that all of the prayers being said for her are working because really there is no medical reason why she has done as well as she had. I will make my life work the best I can with really living and a little bit of levity.

Cardiology and well, Cardiology

2010-06-23T22:16:00.001-04:00

C had two appointments with cardiology today.

Yeah, it was just about as fun as it sounds.

Since C developed the arrhythmia we get to see not only the regular cardiologist for all of the structural issues but also the EP (electrical) cardiologist. We were a little confused at first with all this as I was under the distinct impression after being discharged from the hospital that we would need to see both. However, when Kevin called to schedule the appointments he got completely run around and kept getting the answer that we only needed to see the EP cardiologist. Very frustrating. Finally got it all worked out but took some finagling so we were not too sure what to expect today.

We ended up being there for 4 hours.

At least C got the full treatment. She had her ekg and echo and got to see both cardiologists. Apparently she is doing pretty good. We are not scheduled to go back to see either cardiologist for one whole month. Wow. Kevin and I were a little shocked but at this point we totally understand that no change and no news is very, very good. We are still very closely watching C as her oxygen saturation at night when she is sleeping is still really low. We asked both cardiologists and neither seemed very concerned at this time. I know that should she still be doing this in a month then we have a problem and that will mean C needs another heart cath. Right now I am praying that she will behave and do as is expected (for once!) and have this issue with her lower oxygen saturation's resolve itself as her lungs and body get used to the new physiology with her heart only pumping mostly red blood with just a bit of blue blood. She is currently connected to a holter monitor (just 24 hours). I will mail the holter back tomorrow and we will get the results in about 2 weeks. Unless of course there is a problem. If there is a problem then we will get a call. I got the impression from the EP cardiologist that he does not expect there to be a problem. I will be praying hard that her arrhythmia medications are still working for her.

Other than our exciting day of cardiology C is doing pretty well at home. Been a little harder for her to adjust this time as she was in the hospital so long this time. She really was not wanting to return to her normal schedule of getting to bed at 8pm and really wanted to stay up to 10pm or later. I finally had to get a little mean with her and insist that she get to bed earlier :). I just took away her morning nap and now she only gets one nap in the afternoon. So far has worked pretty good.

C is loving being home. She is so happy to be here and see her brothers every day. Every time she sees them she just lights up and gets all excited. They can make her laugh like no one else. She so loves when they play with her. She is also really loving being back in her co-sleeper right next to mama and daddy so we can keep picking up her paci and putting it back in her mouth every time she loses it and fusses. I know, she really needs to be in her crib in her own room but between her feeding pump and her monitor going off like crazy all night because of her lower sats I just like having her close. Besides, I do not want to be the one running across the house every time the silly thing alarms. We already do not get enough sleep between the alarming and having to be up until midnight to give her one of her meds so I really do not want to add to it by running across the house all night long.

So, since everyone has asked. All we do now is wait. We all live our lives as best we can doing everything we can and we wait... and as her one cardiologist said today...we all watch her get fat! (which by the way is already happening thanks to her g tube...she is a whopping 14 pounds, 10 ounces and gaining everyday!)

Thank you all so much for the prayers and all of the help. So many of you have tremendously helped us and I feel so bad that we have not had the time to thank everyone personally. Even though we are very slow on that, please know that we truly do appreciate all that every single one of you has done for our whole family.

There's No Place Like Home

2010-06-13T11:37:00.002-04:00

And we ALL should be there a little later this afternoon.

C is being discharged today. Around noon.

She has been fever free for over 24 hours (at least that is what the doctors tell us). Kevin thought she was running a fever last night but with round the clock Motrin she seems to be keeping it in check. Nothing at all has grown on any of the cultures they have taken (3 times she has been cultured). There has been no indication markers on any of the blood they have drawn and sent (at least 10 times). There has been nothing on the urine sent (and I refused to let them cath her after the first time...h to the l no). She has no "bugs" in her system. The doctors are all pretty confident (there are never any guarantees when you are dealing with the stuff C has) that the fever is coming from the effusion on her heart. The effusion is still small and is shrinking with the increased Lasix and Motrin. She woke up this morning all on her own after a very good night of sleep and she was happy. Just like her normal self. Yay! Unfortunately I think all this has made her take a step back with her eating but I think she will catch on again. If nothing else we do have the g tube now. She will not be starving like before and we are doing our best to get some junk in her trunk.

I think she was telling us yesterday she wanted to go home. We had the doctor okay pulling out her central line that was placed last week. The intensivist was very hesitant as they have such a hard time getting any access on C, plus they have been doing the blood draws from the line instead of having to stick her. But, he did okay removing the line because she did still have an iv. I had been negotiating with the surgical PA here about removing her central line. We had a deal worked out. Again, based on C having and iv. Well, C decided she has had enough and her iv actually came out on its own last night. The nurse tried to save it but the catheter was completely out, laying on top of her skin. I was like, uh oh. So was Kevin. He kept thinking, oh great, the intensivist is going to kill me. Especially if she runs a fever again and the they have to draw blood. I don't think Kevin got that much sleep last night he was so worried she would run a fever again. But, C surprised us all and did not break with the drama last night and remained fever free. No blood draw, no cultures.

No fever + good echo = C going home.

We are so grateful to everyone for all the prayers and good wishes and to all of our family who have visited and helped us out with the boys. 19 days is a VERY long time to spend in the hospital, especially an icu. C will have to see both EP and regular cardiology later this week, but we are all praying for good reports and much more time at home before we have to be back in the hospital. God is good.

There

2010-06-13T11:37:00.000-04:00

First Good News

2010-06-10T16:19:00.001-04:00

Good news has been rather rare around here lately. Today, I got great news. The EP cardiologist came in a little bit ago and went over the results of her holter monitor. He actually used the words excellent and very good. Oh my. He said she only showed arrhythmia 1% of the time which in his words is "excellent." The other really good news is that he said where originally her arrhythmia looked chaotic and irregular, the holter monitor actually showed that her arrhythmia is actually more uniform. This is all very good news. In fact, the EP cardiologist is starting C on the maintenance does of her anti-arrhythmia medicine tomorrow instead of continuing the loading dose and he let the intensivist know that he clears her for discharge. The only thing that is scary for us is that he did say that he does expect C to have break through episodes. We will need to be extremely vigilant and call them right away so we can make sure to get it under control as soon as possible. We will have to see both the EP cardiologist and her regular cardiologist now. Hoping we can at least coordinate them together since I see us having to come to St. Pete from now on. No more clinic visits in Sarasota for us.

So, of course everyone's next question is...when do we get to go home? That is a question I would just love to answer but cannot right now. C broke with a fever AGAIN this morning. Seriously. This has got all the doctors completely stumped. Her white cell count is completely normal, she is not cranky (in fact she was sitting up, playing and laughing this morning we she spike to 102.8) and she is eating fine. I have no idea (and neither do the doctors) just what in the world is going on. She has been on antibiotics since her first fever 7 days ago. Nothing at all has grown on the cultures. They have redrawn blood for all the cultures again. I guess we need to see if anything grows this time. I can tell the intensivist is really hoping the fever is a result of an infection on her central line site. Because really there is nothing else. So totally weird. I am so scared I am going to hear the words "heart failure" and "transplant" again but no one has said that. She has not even been ordered another echo. I keep thinking she will be getting one just to rule out failure but she has not and she is really showing no other signs of failure. Everyone is rubbing their heads. Some of the nurses have determined that she just likes it here and likes them so much that she just does not want to leave. Ha ha.

Now we wait again. Wait to see if she kicks the fever. Wait to see if anything grows on this new set of cultures. Wait to see if she has any other illness symptoms. Wait and see if it is indeed her central line now causing the problems. I am much more content with waiting now. I am just so happy that her heart is doing so well.

That is all the news for today. Keep those prayers coming because they are really working. Thanks so much.

Stable

2010-06-10T00:15:00.001-04:00

C had a pretty good day. She still seems to be suffering from the rhino virus, which apparently is a whole lot worse than just a common cold. She is also teething. Poor thing just can't catch a break from all the ickiness.

As far as I know, her heart has done well with staying in rhythm and rate last night and today. I did not get woken up once from her monitor going off. I got woken up for lots of other reason but not because her monitor was going crazy. The increased amount of one of her meds seems to be doing the trick. She will be in the hospital for at least another 5 days as the cardiologists want her to get a full 10 day loading cycle of the anti-arrhythmia medicine. Because of the increased time on the loading doses she needs to be in the hospital to be monitored. There was some talk of moving her to the main pod area of the floor but that was before she broke into tachycardia again. Plus I voiced concerns about her being out of the cardiac icu and the response back was we can stay in the icu as long as there is not a pressing need for the bed. So, I am a little nervous they may try and move us out but I really hope not.

C did have her holter monitor on all last night and through today. We have not heard any results of that yet but hope to get some tomorrow.

Fortunately Kevin was able to come back to Tampa today and give me a break. He spent most of the day with us and let me rest and is staying with C tonight so I can not sleep in the hospital. Also, my Aunt J just flew into town tonight to help us out. I am so blessed to have such wonderful family who are willing to drop everything and help us out.

Right now we do not really have that much info on C. She is stable, which is awesome. The meds seem to be working. I really wish she could kick this virus. It makes her miserable on top of everything else. We are hoping that we can meet with the EP cardiologist tomorrow and get a better understanding of what is going on and get a long term plan in place. I really dislike not be prepared and not having a plan. Being in limbo really sucks. Most of the time I feel like I am just sitting around waiting for something bad to happen.

Please keep the prayers coming. God willing, C will respond to the increased meds and we will hopefully be able to go home end of the weekend or the beginning of next week. Thanks so much.

Living on the Edge

2010-06-08T10:30:00.001-04:00

and it is so not as glamours as the Aerosmith song. The constant worry and stress are really taking a toll on me, Kevin, the boys, shoot our whole families. I cannot stop watching the monitor when I am in C's room. I dread leaving her and I dread coming back to the hospital. Poor Kevin keeps telling me to stop watching the monitor but I am just scared.

While C was improving she has started to have issues with her heart rate again. She was placed on 2 different medicines to control the rate and arrhythmia she was in 5 days ago. As of 1am she was no longer holding a steady heart rate. The rhythm is still good but her actual heart rate (how fast/slow her heart beats) is all over the board. Apparently of the two problems to be dealing with right now, the heart rate issue is the better of the two but since the two go together this could start affecting the rhythm as well). Fortunately my mom is able to be here with me today as I have gotten no sleep, watching the monitor and all. Plus C was just cranky all last night and would not let me put her down. She is not feeling well at all. I just took her temp and she seems to be running a fever again (will have the nurse do it as well just to be sure). She seemed like she was getting better and kicking this cold but she is now getting worse. Not sure why. She has had two different blood work-ups for cultures and nothing has grown at all. She was on super heavy duty antibiotics for several days and is continuing on Omnicef just to be safe. I know that if it is a virus then the antibiotics will not do anything but I am really praying there has not been an infection set in since the last blood draw/urine sample.

Right now I do not have any plan of action as I have not spoken with any of the cardiologists yet. Hoping they will finish rounds here soon and take a look at her and let me know what the plan is. I know the doctors have mentioned before that we could change medicines and see if that works. I am really praying, and asking all of you to pray as well, that the medicines work. Right now the alternatives to treat this are very risky for her. The ablation is something the doctors can do if pressed but they really want to wait until she is bigger and older (and the success rate is not very high apparently). Everything with all this stuff really depends on her size. The bigger she is, the bigger her heart is, the better. I am so not willing to consider what will happen if the medicines do not work.

I am not trying to be an alarmist but C is still pretty sick. She can really use all the prayers she can get.

Thank you all so very much -

And Now we Wait

2010-06-06T11:08:00.001-04:00

C had another good night. This time she did not break with the drama and everything was nice and stable. Seems as though C is finally getting rid of her cold and fever. She did still get Motrin but I think she is finally kicking this out of her system. She also did not have any break through arrhythmia problems. This is all very good. We are still working with her feeding and she did receive about 10 ounces of formula over night in her g tube. Everyone is determined to get her to fatten up.

So, now we wait. This I think is the hardest part of being in the hospital because there is no real plan or action, we are just here for observation. I am very happy that C has made it this far but hospital living really stinks. I really just want to get her home and back to her normal routine. I am so nervous that the longer she stays in the hospital the more risk she is in for getting sick. But, I think as long as she stays stable and she can get her central line out tomorrow then we can go back to having a little more freedom to get C up and around and out of her room. Maybe we can even get her back to wagon rides and get her outside a little.

As of now there is not much more to report. C has really turned around and is actually acting more and more like a "normal" baby. She eats in the appropriate amount of time and then plays and goes down for a nap. Your have no idea how much we have missed C having a normal baby life. And, I am so very grateful that we are at this point that I can be aggravated by having to stay in the hospital for observation. Hopefully it will not be as long as the doctors are saying. Right now they are saying we may be discharged Wednesday or Thursday. I was hoping for Tuesday but I guess I will take Wednesday. Thursday will be a little tough to take but it is what it is.

Thank you all so very much for the good thoughts, positive energy and prayers. C is still in a transition period and I am still praying that she continues to improve. I will be so very happy if she can kick this arrhythmia so that is what I am praying for.

Making Progress

2010-06-05T12:57:00.001-04:00

C did very well yesterday. She stayed in sinus rhythm with no breakthrough tachycardia. Awesome. The meds are working. We saw the cardiologist and he did an echo yesterday morning and confirmed that her heart is still functioning very well with very good blood flow. He even showed us on the echo that exact spot where her recent surgery was done. Pretty cool to see. He was very happy (and relieved) to see that her heart looks as good as it does. Honestly, so we were. We were both afraid that the crazy arrhythmia and high heart rate damaged her heart in some way.

We are back to trying to feed C her normal stuff. The most amazing thing is that she actually WANTS the food. She gets all excited and grabs at not only the spoon but at her bottles as well. She is holding them on her own and actually drinking while awake. We are just in awe of how much better she is eating and her improved appetite. Of course she is still not eating enough so that is where the g tube will help. The doctors are currently working out the best plan for her and it sounds like we will be running 50% of her caloric intake overnight through the tube. Will give all of us a break and will allow C to actually enjoy eating since we will not have to constantly force her to eat.

Unfortunately C's fever returned last night (and so did my fear of her tachycardia/arrhythmia returning). Ugh. She spiked to 103.7 around 6:45pm right as our very favorite nurse was getting ready to leave. Twice now C has pulled out the drama around this time of night. Two nights ago it was breaking back into the arrhythmia and last night a return of the fever. So, today we are trying for no drama at all. I told her nurse that the third times the charm and that tonight when she leaves C will behave herself. The doctors did confirm today what I have been saying all along, C has a cold. Well, duh. Her nose has been so stuffy for days and she is congested. I was actually leaning towards sinus infection but the viral panel came back as positive for rhino virus, the common cold. At least now the doctors are happy to see there is a reason for the fever and they can treat it. C will remain on the super heavy duty antibiotics for one more day just to make certain that nothing bacterial, fungal or yeast grows on the cultures. The intensivist will be happy to take her off the antibiotics once he sees two negatives on the cultures.

Did see the cardiologist this morning and things still seem to be looking up. He agreed with the cardiologist yesterday and the thinking is that C's arrhythmia is called atrial flutter. The atrial flutter is a direct result of the surgery she had with the scarring to the atrium. He also said the same things as the cardiologist yesterday in that there is a good chance we can get rid of this arrhythmia for good in the next year or two either through C's atrium healing and behaving itself, or her getting bigger and the scar tissue lessening, or through an ablation, or even through doing an electrical type surgery at the same time as her Fontan. Apparently there are many options now that the doctors know what they are dealing with. With each day and more consensus among the doctors, because you know there are like 8 different doctors involved with this, I get a little more comfortable in knowing what we are dealing with. C is stable and tolerating the medications. The medications are keeping the arrhythmia in check. The doctors know what they are dealing with and how to manage it and hopefully treat it to get rid of it permanently. C can and more than likely will develop future arrhythmia problems as she gets older. We will be prepared for them the next time.

There is talk around this joint that we might be sprung mid week. This, of course, all depends on C behaving herself and doing what she needs to do. She has to transition to anti-arrhythmia oral meds and have no break through tachycardia. She has to kick this cold and get rid of the fever. She has got to stop being a drama mama.

So the news is turning up. All the prayers are working. God is listening.

I am going to just reiterate what Kevin said, if you have called or left us messages please do not be upset if we have not gotten back to you yet. The cell service in the hospital sucks and we just really have not had time. After watching C struggle so much the other night I can hardly take my eyes of the monitor. I know I am going to be a wreck once we get her home. Kevin was hoping I might finally allow her to go sleep in her own crib in her room but that is so not happening now, She will stay right next to my bed.

Some Hope

2010-06-04T12:47:00.001-04:00

I reread my email from last night and have come to the conclusion that I should not be sending out emails when I am tired, hungry and my nerves are totally shot. Wow, the spelling and grammar mistakes.

Anyway, I will try and do a better job of explaining what is going on with C now that I am somewhat back to normal and we have more information.

Yesterday all the doctors were thinking C had what is called atrial fibrillation, the very worst kind of arrhythmia. We spoke with the intensivist, the regular cardiologist and the electrical cardiologist. With each conversation the news and prognosis was worse. She had the worst arrhythmia: the hardest to break, the hardest to treat, the hardest to manage, the hardest to get control of with medications. Kevin and I were looking at our worst fear, C not making it long enough to get a heart transplant. That is how very sick she was yesterday.

The intensivist went forward with placing her central line because she needed stable, ready access for her medications that would be delivered through iv. Everyone was on edge. Everyone was very closely monitoring C. No one was smiling. For the second time ever since this journey began, I was scared. Scared we would not be returning home with Carolena.

During the placement of the central line C's heart was tickled when the line was placed. This is completely normal and happens every time. Which is why placing central lines and removing central lines are so risky because the line is going to the heart. One false step and the heart can go into an arrhythmia or stop beating all together. So, when the line hit her heart it actually had the opposite affect and kicked her heart into sinus rhythm. Totally unexpected and "dumb luck" to quote the intensivist. Unbelievably he just delivered the very best news possible. If touching C's heart with the wire broke the crazy arrhythmia and put her back in normal sinus rhythm the possibility of her arrhythmia being atrial fibrillation (the very worst kind) just became almost nonexistent. Holy cow. All the doctors were relieved. Now the all had a better understanding of what was going on and how to treat it.

C did stay in a nice normal sinus rhythm for 8 hours yesterday after being kicked back in. She did receive a dose of medication orally. However, they did not want to give her too much since her blood pressure was already a little low and the medication being given to stop the arrhythmia lowers blood pressure. She did start back with the crazy arrhythmia around 7pm. She got two different medications through her iv and she broke back out of it after about an hour and a half. She did not tolerate this bout as well as she had the previous night. Whereas the night before she was in super fast rhythm for hours and just started looking really crappy yesterday morning, last night it took all of an hour before she looked crappy. Her body and her heart just had enough. She did finally break the crazy cycle again with the medications and went into sinus rhythm. This is apparently another good sign that she does not have the worst arrhythmia.

We saw the same two cardiologists again today. One is a fetal/regular cardiologist and the other is the EP (electrical) cardiologist. Both were a bit more positive this morning. The one cardiologist thinks what C has is called an atrial flutter. Certainly not the best arrhythmia to have but certainly not the worst. The arrhythmia has been triggered because her atrium has been resected twice. There is scar tissue as the part that was operated on heals. This is messing with the signal. In addition I had the cardiologist explain why having heterotaxy makes this all so much worse. My understanding is that C's heart basically has two right sides, instead of right and left. Copies instead of mirror images. As such she has two competing firing nodes. She would have had developed arrhythmia problems at some point in time. We certainly did not expect it to be right now, but she would have developed them.

All the doctors agree that the trigger seems to be the fever that she was running. That on top of the gi tube placement just stressed her too much. But, the fever alone would have triggered the arrhythmia. Everyone has said we are very, very fortunate that we were still here in the hospital when this happened. Had we been at home and this happened we may not have known anything was severely wrong until it was too late. C tolerated the crazy rhythms so well that we may not have noticed until is was too late. She could have had some severe damage.

I did talk to the EP cardiologist and he did tell me that he was upset that they did not call him earlier two nights ago and that they let her go so long with the high heart rate. He said he has already talked to everyone about that. Fortunately C tolerated the long spell with little repercussions. She is still having to receive some extra minerals to bring her system back in balance but should be okay soon.

The plan for now is to keep her on the iv meds. If she breaks into the fast rhythm again then the doctors will manage with increasing the medications to break her out of it. If she absolutely cannot break with the meds then they will sedate her and shock her. Not such a lovely thought as it could go either way but they can do it. C will have to follow up with the EP cardiologist and her next heart cath will be extremely long. She will have two different invasive cardiologists doing their thing and getting the data they need. She will transition to oral medications to keep this arrhythmia in check. Once she shows she can stay in sinus rhythm with oral meds then they will start talking about discharge. She still has a long way to go. Her whole system needs to be brought back into balance and her heart stay nice and calm. She did have an echo this morning and her heart function is still looking really good. The cardiologist showed us exactly what was done during her surgery and how now it looks really good. Her blood flow is really good and her Glenn shunt is working just fine. She has been started back on the Viagra to address her pulmonary hypertension. The doctors are all still saying that her lungs should adjust to the new pressures and relax and she should be able to get off that drug. The hypertension is not something the doctors think will be long term for her. This arrhythmia should be easier to manage as her heart heals and the scarring reduces but there is a possibility that as she gets bigger she will move past this issue. He even said that there is a possibility she will outgrow this arrhythmia or it could be addressed with an ablation when she is older and bigger. I am by no means counting on it and am pretty certain she will be getting a pace maker after her next surgery, the Fontan but just that the cardiologist is talking like there is real hope just makes my whole day.

C is trying really hard to get back to normal. She is eating again and doing well with it. She, of course, still does not take the volume she needs but that is what the g tube is for. The g tube has been placed and is doing well. She is healing like she should and we have run meds and pedialyte through it. She is doing well with that so far. We are also able to vent her g tube (let all the air our of her stomach) which does seem to help with her gas issues. She still has a long way to go on the eating thing as well.

Each day right now is new. What she did yesterday does not affect what can happen tomorrow. Fortunately the doctors are more confident that the medications are working and that the arrhythmia can be controlled that way. We were very close to losing her yesterday. C continues to shock us all, including the doctors. She decides to throw huge curve balls at us and make us think we are dealing with the worst of the worst and then she pops out of it and says nope, this is bad but not the worst. I told her yesterday that she has got to cut it out. She is going to give me a heart attack.

Right now I am not sure how long we will be here in the hospital. Will all depend on C and how her heart handles the medications. She will not be discharged until she is under control. Fortunately I had already asked if we could be moved to a bigger room and voila, a bigger room opened up and we were moved last night. Thank goodness. Now we all have a little room to breathe, figuratively and literally.

Thank you all for all the prayers. Keep them coming because they are working. Through the grace of God, C is still here with us and we have real hope that she will be hanging around for awhile.

High and Lows, Ups and Downs

2010-06-04T12:44:00.001-04:00

Today has been the toughest day so far. I thougt last night was bad but today, today was so much worse.

The morning started with waiting for all the doctors to get here and look at C and try to figure out what was going on and get a plan to help her. Fortunately the doctors were all on time this morning and we did not have to wait long for the to evaluate C.

What is happening as best we know is that her atrium is not firing right. Most likely cause of the problem lies in the 2 surgeries she has had that damage/scar the atrium. Her heart is very angry right now and is responding in kind. Unfortunately this electrical issue is common with these surgeries and is almost guaranteed with kids like C who have heterotaxy on top of everything else (and pretty much where we were headed post Fontan). The way I understand this is that the signal being sent from the top of the heart to the bottom of the heart is not making it there. It keeps looping around the top of the heart instead of flowing down where it needs to. She is receiving two different medications to try and keep her heart beating and firing correctly. One actually lowers the heart rate, causing the heart to not beat as fast. The second medication is a blocker that tries to block the signal from going in the loop.

So, to take this from the beginning here is how it has all gone down today:

The intensivist came in and gave me some info and let me know his plan. He was going to sedate her and place more permanent lines (ie central line) so she would have good and stable access. Which is critical right now to run all these meds and fluids and such through. He was going to place an arterial line as well but decided against it. That may change tomorrow. The arterial line would become necessary if and when the doctors decide she needs a much more accurate way to read her blood pressure.

Then I saw the regular cardiologist on rounds this week. He was saying what he though it was and how to treat it. He was actually pretty positive and upbeat and I though for a minute maybe it would not be as bad as I thought.

Then I saw the cardiologist who specializes in the electrical issues with the heart. He was not at all positive. Not a bit at all. He explained that what he say was the worst possible rhythm, the hardest one to break and the least likely to respond to treatment. He was basically saying C was dieing and that all that was left was transplant because her heart was failing.

Kevin and I were somewhat shell shocked.

So. we left it at that and went outside to wait while the intensivist placed her lines. We were so upset and stunned and we left knowing there was a chance she may not even make it through the line placement because the sedation she needed for it just became so very risky.

Kevin decided to call and talk to C's main cardiologist to get his opinion. He also got in touch with the fetal cardiologist we really like to get his opinion. After speaking with the fetal cardiologist we felt slightly better but still not sure of where things lie.

Then the most amazing thing happened. The intensivist came out to say the lines were placed and he said when he placed her central line he "tickled" the atrium of the heart and her heart broke the crazy rhythm and went into sinus rhythm (beating nice and steady and normal, firing just right). So amazing. I hugged him. Of course this is not the end. She could still flip back into the crazy rhythms. She remained in a nice sinus rhythm for about 8 hours with little medication and then she flipped back to the crazy rhythms around 7pm.

Kevin called me right away and let me know what was going on so I was prepared when I got here. I was hoping that just maybe she would stay in a nice rhythm but as with everything else we cannot get too excited by one good thing.

C has been given the iv medications now and she is going between the nice normal rhythm and the super fast crazy rhythm. We also saw the other electrical cardiologist and he was a little more positive about what we are looking at and what we can expect. He did not think this is the super bad rhythm and thinks that she can be controlled with medication once we get the right combinations. She has to be in a nice normal rhythm and also not bottom out her blood pressure. Very delicate balance.

C is fighting really hard right now. These crazy rhytms and fast beats are stressing her heart and her whole system. She looks awful when she is in the bad rhythm and she just has no choice but to pass out. Watching her struggle all last night and now again tonight is horrid, I just want to hold her and make it all better but she has a long way to go before she can even stabilize. The EP cardiologist has said it will be a very long night with lots of ups and downs. The nurses and doctors will be very closely following her so she can will be in perfect balancewith all her other stuff.

C will be in the hospital for several more days at the very least. The prayers we need most strongly right now is for this medication to work and for C's heart to respond. She has got to be able to stay in a nice rhythm.

I know I am not explaining this as well as I would like but I am tired. Just so you all know I did go back to my mom's apartment when C was stable and did get some sleep. I will try and update more later once I have had some more sleep and I can actually think clearly. We are in for a very long, long haul and will be seeing a lot of the electrical cardiologist as well.

Outside of the intensivist (who, by the way, if you all have not heard....I LOVE HIM!) breaking her out of the crazy rhythms this morning the best news was that the EP cardiologist was actually talking about her her stabilized and getting her home and getting her fattened up for her fontan.

Please keep the prayers coming and I will try to forward some pictures soon.

Not the Update I Was Hoping to Write

2010-06-03T06:28:00.000-04:00

I will try to get right to the point.

One - I do not have any answers yet as to what, if any infection C has. She had been running a relatively low grade fever until around 1:30pm yesterday. Then she spiked a temp over 102. That gets the doctors here pretty nervous so she had blood drawn for cultures, a chest xray done, a nasal swab for viral panel and then an attempt to cath to get urine. There was no urine obtained so we went to plan b which was to tape a bag over her area and see if we could collect the urine that way. No go. After like 5 times (over the course of 10 hours) the nurse decided that she would need to do another cath for urine. C was finally starting to feel better , broke her fever and was smiling and talking, and I figured we might as well go ahead and do the cath at night (10:30pm ish) so as to not wake her in the morning. I so regret that decision...way more than I can possibly put into words. Which leads me to -

Two - She screamed bloody murder during the cath (don't blame her one bit) as soon as it was done, I picked her up to calm her down and she seemed fine. Laid down right against my chest and shut her eyes to go to sleep. The nurse comes running back in like 2 second later all concerned by what she is seeing on the monitor. C went into SVT or Super Ventricular Tachycardia. SVT is where the heart beats way, way, way too fast. At one point I saw C's rate at 299. Just to keep things interesting she would follow that up with going into Brachycardia (or bradycardia...not really sure what the term is), which is when the heart beats way too slow. Of the two, brachycardia is the better as the heart is not working so hard. C's rate went all over the board for about 2 hours until she finally settled into a very high rate with breakout SVT into an even higher rate for the last 4 hours. A normal heart cannot withstand long bouts of SVT without intervention. C's heart is even more delicate as we really do not want her heart working harder than absolutely necessary (hence the surgeries to separate her blood flows and work load on her heart). She has already received several ekg's to try and capture the arrhythmia problems and she has been given medication to try and slow her heart down. Nothing really doing right now. I am supposed to see the electro cardiologist first thing this morning and maybe get a better idea of what is going on. This is really scary. I am beyond terrified. The worst part is that no one knows or can figure out why she is in SVT. She has never done this before and has not ever had signs of it. Her rhythms have not ever been a problem. She had a sedated echo in the morning after her g tube was placed and the results came back as perfect. Her heart looked great, her function great, the repairs great. So far the doctors are stumped but I am praying really hard for some answers in a couple hours.

Needless to say, I am begging everyone to say a prayer for C. I have been up pretty much all night with her and I just cannot consider that she will not pull through this. This arrhythmia problem she is having is one you see right after surgery, not 8 to 9 days post op. It can be treated with medications, you just have to find the problem first. I am trying really hard to not do the what ifs but I am tired and scared and can't help but think what if we just took her home Monday and came back for the g tube. Would she have avoided getting sick? Could she have avoided this new heart problem? What if I delayed the cath. Would she have freaked out so bad in the morning? She had already been through so much yesterday and was this just the final straw on her stress? She hates being here now. She screams and cries when she has to lay on the bed for the nurses. She is so over being messed with. She is still hungry and not feeling well from having not eaten anything in well over 24 hours to prepare for the g tube. She ran a fever for over 30 hours and just felt sick all day. I have been trying to tell myself all night to trust God. God knows what is best and everything will work out for C the way it is supposed to. But I am having a really hard time with that right now. I am not prepared to not be bringing C home this time.

I will do my best to send another update once I have more information from the cardiologists. I guess one good thing is that I have yet to see a doctor in her room and you always know it is really serious when the doctors start showing up. I cannot promise I will get back here to update anytime soon so please bear with me. I so appreciate you all and all the people who are praying for C. Please., please, please send the word out...we need them now more than ever.

My mom is here with me (and has been since I called her at 1am) and Kevin is on his way back to Tampa right now.

Should be Tubing Tomorrow

2010-06-01T15:37:00.001-04:00

The intensivist here has been really right on with making sure to follow through and get C on the GI schedule to get her g tube placed. As of right now, she will have the procedure done tomorrow morning. Should be rather quick and easy. She will be sedated but not enough to be intubated. The whole thing will be done in her bed in her room. She will not be able to eat/drink at all tomorrow. She will be allowed to put stuff in her tummy starting Thursday morning. If all goes well then we will use the tube Thursday, make sure it all works and then hopefully she can be discharged Friday.

Of course C has to put a wrinkle in the plans. She started running a fever earlier this afternoon. Seriously.

Right now the intensivist is not concerned. She has no lines at all and her incision looks really good so there is really no open place for an infection to set in. I imagine if she is still running a fever tonight and into tomorrow morning then the plans will change. Crap.

I honestly have no idea why she would be running a fever right now. The best I can come up with is either 1) she picked up a cold or 2) she is getting dried out from the Lasix. Hoping it is the latter and she has not come down with some sort of infection. If she has an infection then who knows how long she will be here.

Other than the above, C is doing well. She still has a measure of freedom and I was able to take her outside to the play area for a little bit. She also had another enjoyable wagon ride. Being C though, she is quickly getting bored with these activities. Go figure. She was not as thrilled with the wagon today. Tomorrow she will be back in bed all day so maybe Thursday she will decide it is cool again. She is supposed to have her tube placed in the morning so I may not be able to update before then but will let everyone know how she is doing after.

Thanks so much for all the good thoughts and well wishes.

Not Much to Report

2010-05-31T23:05:00.000-04:00

Which is a very good thing.

C is not in the hospital now for any reason other than waiting for GI to come and place the feeding tube. Supposedly they are going to place the feeding tube on Wednesday. Of course there is always a chance that will not happen and they do not get around to placing the tube until Thursday or Friday. We were really pushing for Tuesday but they said they just could not get her on the schedule for Tuesday. Don't know why, but that is what GI said.

So, we try to be as normal as we can while living in a hospital which does not allow for any kind of normal living. C is out of her normal environment and off her normal routine. She cannot leave the hospital and only very recently has been allowed to actually leave her room. Getting out does help everyone's sanity. Unfortunately with C being in a cardiac ICU we just cannot have the parade of visitors that we would so welcome to help break up the tedium. Back here in the ICU they get a little particular about allowing in germs and such...gee, I wonder why? Anyway. Living in a hospital is really horrible. Especially when we are living here only because we have to wait on getting a relatively minor and easy procedure done. I guess this is the penance we must pay for being so stubborn in the first place about C getting a feeding tube. If we had moved forward with this 5 months ago, shoot, we would be home sleeping in our own beds tonight. Instead, I have been listening to C whine and cry for the last hour because she does not want to be put down in the hospital crib, she is all hopped up on the 15 different drugs she is getting every hour or so because they all have different times they must be given, she hates the nurses messing with her (and for some unknown reason the doctors still want vitals checked every 4 hours...they already know her blood pressure refuses to drop much below 90 and hovers around 100...continuously, for the past 48 hours, on the same drug schedule...grrrrrrrr), she has been annoyed the last hour because the stupid blood pressure cuff does not work and the nurse keeps trying to take it, and of course just when she stopped screaming and actually went to sleep (2 hours past her normal bed time) the nurse comes in to move the stupid cuff because it is not working and wakes her up and she starts crying all over again...and for some completely unfathomable reason the cleaning people must empty the trash in the babies/kids rooms at 10:30 at night. Seriously. Hey people, the last time I checked my daughter is no longer all drugged up on fententyl and versed and living in sleepy land 24 hours a day. We are trying to be as normal as possible, per the doctors, but you are all making.it.impossible.

Can you tell I am a tad frustrated. And this is my first full night here. Stupid hospital.

I have no problem with most of the above (with the exception of why it is absolutely critical to get the trash in the middle of the night, disrupting sleeping babies/kids), the doctors and nurses are just doing their job after all, however, it makes it very hard to tolerate when we are only here because some other doctor just can't quite get us in the schedule.

So here we sit. And wait. For something that everyone tells us is so darned important yet apparently not important enough to do, you know like today. All the other doctors were here today. Apparently the GI's had better things to do. Can you tell I am really not liking the GI's right now. And just so you all know, this is the same group that we have been seeing, the same group who supposedly understands how critical it is that C get her feeding tube.

Breathe in.....breathe out....

Sunshine and rainbows....

Anyway.

Kevin is back at home with the boys. I am sure they were ecstatic to see him and be back in our home. Got to talk to them briefly tonight on skype. C got to see them and blow kisses. She so loves them.

We are hoping that we can be discharged Friday. That would be the earliest if all goes to plan and goes well. Here's to hoping.

All My Fault

2010-05-31T23:04:00.000-04:00

(Yesterday, Sunday, May 30)

Ok. So sorry for the lack of updates for the past two days. For those who do not already know I have been horribly sick the past 2 1/2 days with what I am pretty sure is food poisoning. Truly horrid....and I hate vomiting. I was super concerned I might have rotavirus which would have really sucked because then I would have been out of C's room for a VERY long time. But, with food poisoning once it runs it course it is gone and I am allowed back in her room.

I was so very happy and excited to finally see C again.

She looked like a different baby to me at first.

She has scabs from where the tape has burned her face and neck. She is so thin, including her face and head (no longer puffy). She has bruises and cuts and pokes and scrapes. Her eyes are a little bruised.

And yet, she still looked beautiful.

She has had to fight a little harder this time but she has made it through. Her blood pressure still remains a little high, even with all the medications she is receiving and in turn her lung pressure is still a little high. However, her heart is functioning very well and her flow remains good. Her sats are a little lower than that what we have been used to but that is to be expected. She is finally running where she should be but it will take us a little to get used to it.

I think she would more than likely be discharged tomorrow but because of her eating and our insistence on getting a g tube this time we are stuck her for a bit longer. The timing on this has been totally off. Due to her not hitting her stride in her recovery until the end of week and then this being a holiday weekend, the earliest she can get the tube placed is Wednesday. Ugh. If she gets the tube Wednesday, then she will not be able to use it until Thursday. Then the observation to make sure it is working and she is tolerating it. So, the earliest we are getting out of here is next Friday. We so did not want this to happen like this but oh well, we do not have much choice now. I talked with the doctors this morning and they all agree it will be best for her to stay then to go home and come back. They are afraid that if she goes home then the GI docs will not have a sense of urgency about getting her tube placed and it could be weeks before we can get scheduled.

Plus, the benefit of staying here is that C gets to have my favorite intensivist help with her procedure, do the sedation and she gets to have the whole thing done in the icu where if there is a problem everyone (including cardio surgeons) can be here immediately to help her. So, while it is totally stinky to have to live in the hospital for another week, this will be the best option.

C's eating is getting better. Still not where it should be but better. And she is still not vomiting. Yay for small steps!

We do have a little more freedom now. C has absolutely nothing hooked up. All her lines are gone. Her last remaining iv blew yesterday so they took it out. She still has her ekg leads on and her pulse ox on but she does not need to be hooked up to the monitors all the time. She only needs to be hooked up for the nurses vital checks and at night when she is sleeping. So we are able to walk around a little bit. At least it helps to get out of the room a little.

Kevin will be going back home tomorrow to be with the boys. They have been having a blast with Kevin's parents, who have been sweet enough to put up with them for the past week. I miss them but they have been doing well and having so much fun with the start of their summer vacation I am not sure they have been missing me any! Will be so very happy when we can all be home together soon.

Thank you again for all the prayers for C. I know they have been heard. C is here today and is back to her old self. She has not lost one little thing. She is still babbling, smiling. laughing, sitting up, scooting around, calling me mama and Kevin dada, chewing on everything, playing with her toys and in general being her normal self. I am so very, very relieved. I was so very scared that even if she pulled through she would lose something and I think one of the hardest things to deal with is watching the lose of potential. Seeing what you could have or did have and just watch it all disappear. But, I have not had to do that and I am forever grateful that we have more time with C.

Still Taking Steps Forward

2010-05-27T11:57:00.000-04:00

C did well last night even if she did not get that much sleep. Poor baby is so gunky in her chest, throat and nose from being on the ventilator and she is having a hard time clearing it out. The nurse has had to suction her nose and throat several times and she hates it. I don't blame her one bit, I would hate it too. It just looks awful. Even worse, the first two times she stopped breathing as if she had gunk caught in her throat. Very scary. Her lips turned purple and her sats very dropping. She finally cleared it and was fine but still horrid to watch.

She was able to start eating again last night and so far she is doing pretty good. She is taking more than she usually does but still not up to what she should be taking. We are taking it easy on her right now because she does still have lots of stuff going on.

C is continuing on an upswing but it seems to me that it is much slower this time. Maybe I am just not remembering the last surgery very accurately but she seemed to be more her normal self at this point last time. I guess I am just worrying too much (and impatient to get her home!) and she will continue to make slow progress. Progess, even slow, is so much better than the alternative and I will learn to have more patience.

Everything seems to be pretty good so far. The only issue she is having is that her pulmonary pressure and blood pressure are still on the high side. She will be getting her normal blood pressure med and she will be getting Viagra now as well. I know if sounds weird but Viagra was originally used to help people like C who need some help with relaxing all the vessels and stuff in the lungs. Yesterday the cardiologist was talking to me about it and she did not think C would need to be on it permanetly but we will see.

C has been taking a nap this morning and resting so I am hopeful that means she will start feeling better too because right now she just seems so miserable. I can hardly stand watching her look so darn miserable.

Thank you all so much for all of your prayers. I know that they have really made a difference. I was very scared two nights ago that Carolena just may not pull through as she was struggling so hard. I can only thank all of you and of course God for seeing that C really wants to be here with us for awhile longer. I can honestly say I have never been more scared since this journey with C began. I am very humbled to know so many are following C's journey and are touched enough with her and her story to keep praying for her. She is truely amazing and I wish everyone could see how beautiful, sweet, happy, playful, smiley and engaging she is.

Moving Forward

2010-05-26T15:40:00.001-04:00

C is off the ventilator. That is correct. She is off the ventilator. She was aggressively weaned down all morning and once the intensivist thought she was awake enough and breathing on her own enough he went ahead and pulled the tube. She needed a tiny bit of stimulation to get her going but she has been doing good ever since. I thought for sure he would make me leave but he said I could stay and help hold her. He said he would only ask me to leave if he had to do some further action like bag/mask or even reinsert the tube. I got to tell you, these doctors have nerves of steel. I was pretty terrified of what C was going to do once her tube came out and at one point I did walk out of her room. But, I went back in and stayed with her and got her to settle down and go back to sleep.

She is currently sleeping pretty peacefully. She does have a nasal canula and is getting oxygen and nitric oxide through the canula. She of course hates the thing blowing in her nose but I keep telling her it is A LOT better than a tube down her throat. Her narcotic pain med drip has been stopped (the fentenoyl) and her sedation drip (versed) has been weaned down. The doctors want her to start coming to and waking up. Get back to her normal self. Her foley catheter was also removed so she is peeing all on her own. Next step will be to see if she will eat. Doctor has not mentioned it yet but maybe tomorrow. She still has a long, long way to go but I think we have turned the corner and C is on the upswing.

I cannot even tell you all how much your comments and prayers have meant to me and Kevin. At some points in the night, reading all of your comments, and knowing how many people where sending up prayers on C's behalf was the only thing keeping me from completely breaking down. Yesterday was a very long day, I think Kevin, me and mom were awake for 20 straight hours. Hopefully we can all get a little more sleep tonight.

Tomorrow is Another Day After All...

2010-05-26T09:50:00.001-04:00

If you were following me on Facebook last night you already know that C took a major downturn early last night. Her sats dropped, she was on 100% oxygen and she was still struggling. Even with the vent all the way up she could not maintain her sat level around 75-80 like the doctors wanted her to be. She was sedated more and more (she is still so very, very stoned) and yet she still struggled. I was very scared.

She got another blood transfusion, lots of warm blankets and some changed vent settings that actually stabilized her. When I left around 12:45am she was actually calm and stable. Kevin stayed the rest of the night/early morning with her and she maintained her stable levels and actually improved. Poor baby is really fighting hard right now.

However, the doctors are all okay with her numbers this morning so aggressive vent weaning has begun, She has already been lowered to 60% oxygen on the vent and is tolerating it well. The next step is to lower her nitric oxide and see if she still tolerates it. Once that is lowered she will be extubated. The intensivist said it will be a high risk extubation for her and she may have a very adverse pulmonary reaction (ie turn really blue). If that happens he will immediately put the breathing tube back in and she will be back on the vent to try again another day. He wants her off the vent as quickly as she can be as the vent puts negative pressure on her Glenn shunt. So far she is tolerating the vent weaning very well. The key will be if her lungs have adjusted enough at this point to keep her oxygen sats up on her own. She will still be getting oxygen through a mask/nasal canula to help but she has got to do it on her own.

Other than this very serious issue with getting her lungs to cooperate with the lower pulmonary pressures she is doing very well. Her heart function is great and the repairs are awesome. Her chest xrays still look clear (no junk or infection setting in) and she is not running a fever. The best thing about getting the tube out and off the vent is that C will be able to be awake more and move around more. She will not have to be so sedated.

I am humbly asking for everyone to pray for a very successful extubation today. Not exactly sure when the doctors will be trying to pull the tube but will let you all know the results as soon as I can. I know absolutely that all the prayers being said for her last night pulled her through to this morning. C is fighting hard right now. Her body is doing the best it can. She just needs some extra help from all of you praying for her. Thank you all so very much.

In C's Room

2010-05-25T16:22:00.001-04:00

Been with C now for 2 hours and she is stable. She is still on the vent and will be for at least tonight and well into tomorrow. Her lungs needs to catch up. The increased pressure she has been living with for the past 5 months causes there to be residual "memory" in the lungs. The doctors are all thinking that her lungs will start to respond to the new lower pressures and lower blood flow. Once her lungs catch up and she does not need so much O2 and NO to keep her sats up she will be extubated. I will be praying really hard tonight that her body and lungs start responding so she can get moving on with her recovery. I know it does not seem like it but C is really sick right now. One of the doctors mentioned he was really surprised she had gone so long and done so well with the pulmonary obstruction and elevated lung pressures. Not really what we want to hear right now but it just reminds me that C is not a normal baby. She is unique, different, complicated and she is so beautiful. I hate that her pretty blue eyes are so drugged she cannot even pull them into focus but I know her body is getting the rest it needs. I will be so happy when I can see recognition in her eyes again.

I know we have said it before so please excuse me for repeating but these next 24 hours are so very critical. This first overnight period is so iffy. Right now she looks like she is doing well but we know that it can change quickly. Kevin and I will be taking shifts tonight so she will not be alone. Even though she is out of it, she is aware and knows we are here. I do not want her to be scared on top of everything else.

Thank you all so very much for the prayers, positive thoughts and good vibes being sent her way. C is one tough little girl but we know she cannot do this alone. I am very grateful for every single one of you and all the prayers you are sending up on her behalf.

C is in Recovery

2010-05-25T12:25:00.001-04:00

and doing well. Her heart is functioning fine. The scar tissue turned out to be membrane and not tissue. The surgeon is not exactly sure why it formed but he went ahead and removed it. He also removed her pulmonary artery from the heart. Her sats are running a tad low right now. The surgeon thinks because she has had high pulmonary pressures by now removing that pressure will keep her sats lower for a little while. He expects her sats to rebound back to her more nomal levels after a few days. He did say it could take a month. There is a very good chance she will be intubated for a little while so the doctors can control the level of oxygen in her blood. I am praying she will not have to stay on the vent long but it is all up to C. Everything else went well. Thanks so much for all the prayers and good thoughts. Please keep them coming as the next 24 hours will be critical, not only to get her off the vent but to also not have any clots, strokes, etc.

Repair Done

2010-05-25T11:08:00.001-04:00

C's surgeon is done with the repair to correct the pulmonary vein obstruction. The cardiologist has done the TEE and says all is looking good. Right now they are getting her off of bypass. She is still holding her own and doing well. Still need her heart to start beating on her own and then surgeon will come up and talk to us.

On Bypass, Surgery Started

2010-05-25T09:55:00.000-04:00

I know it sounds confusing but the last hour has been the sugeron just getting through the adhesions and scar tissue from her previous surgery. C is on bypass and the surgeon will now do the fixing of the scar tissue in/around her heart that is causing the pulmonary vein obstruction. She is still doing well. Please keep the prayers coming.

C's lines are placed

2010-05-25T08:45:00.000-04:00

C's lines are placed. She is sedated and intubated. Her surgeon just made the incision so from now will be a few hours. So far, so good.

Please keep the prayers coming.

Thank you.

C's in the OR

2010-05-25T07:51:00.000-04:00

The nurses took her back at 7:30am. The nurse will come out and let us know once surgery starts. She needs to have all her lines placed and sedation done. Not sure how long will take but we think at least an hour to get all that done.

Thank you all for the prayers. C needs them today.

A Post Just for My Memories

2010-05-21T13:19:00.003-04:00

This is a really long post and if you are on my email list, you have already read them. I like to go back and post these, as I write them when everything is still fresh. I do not always get to do that with blog posts. So, this post is really just for me to remember what was going on and when.

Holding Pattern - May 13, 2010

C saw her cardiologist this morning and he has informed us that we will not be getting a feeding tube for C for at least a couple of weeks. He wants to see the results of C's heart cath on Monday before moving forward with placing the g tube. We are not exactly thrilled that we have to wait a little while longer now that we have decided to move forward with getting the g tube but we are also wanting to see what the heart cath says. My understanding is that the earliest the g tube could be placed would be around May 27.

So. The plan as of now is for C to go to St. Joe's in Tampa, Monday, May 17 for her heart cath. Depending on what the cardiologist finds with C's heart will dictate when she gets the g tube. We are really praying hard that there will be no new issues found with the heart cath. Both cardiologists do not think we are going to find anything major and are doing the cath so we have a concrete answer as to her heart function at this time. Once we get the results either way then we can focus on getting her heart function correct then go on to the eating stuff or worry less about her heart (until her next surgery) and move forward with getting her gut issues all worked out.

And of course after all my fretting about C's cardiologist pushing for a Nissen wrap fundo procedure, he did not even mention it this time. I was kind of surprised but did not want to push the issue since he did agree when I said the GI doctor wanted to do the endoscopically placed g tube versus the surgically placed g tube (having the tube placed surgically would be done if the wrap has to be done too). Sometimes these doctors just confuse me. Oh well. At least it looks like we have one less battle to fight. Yea!

So now we return to our somewhat regularly scheduled existence with C's crappy eating and wait. Do de do.

Not What We Were Praying For - May 17, 2010

The results of C's heart cath today have determined that she will need another open heart surgery in the next week or so. C will be staying in the hospital until surgery and through recovery. This surgery is to re-fix her pulmonary veins that were repaired back in December. She has developed extensive scar tissue around the suture site on her heart that is causing critical stenosis of her pulmonary veins. This situation is the better of the two situations with pulmonary vein stenosis. Because this stenosis is caused by scar tissue from original surgery it can be repaired. However, there are still a lot of risks outside of just going through surgery again.

Right now we don't have a date scheduled for surgery but we will let everyone know as soon as we do. Thank you for all your prayers, love and support.

We Have a New Plan, Some Answers - May 17, 2010

Yes, C will still be going in for another open heart surgery.

No, it will not be this week.

Yes, we are devastated.

The new plan consists of her staying here in the hospital overnight and then being discharged tomorrow. She will come back to the hospital next week for her surgery. We will be meeting with her surgeon tomorrow morning and getting the date for her surgery. Kevin figured out that C was admitted today because the cardiologist doing the cath was trying to get her into the surgery as soon as possible and thought that since we were already here C could be admitted and have her surgery this week. Unfortunately, there are a lot more, much sicker, children than C already lined up for surgery this week. Fortunately this means that while C is sick she is not as critical as we first feared but it is still pretty bad.

Here is what is going on as best I can describe.

Back in December, C had two repairs done to try to get her heart to function as efficiently as possible. The one repair deals with her pulmonary veins. Her veins were emptying into a confluence (small extra chamber) under heart versus into her atrium where there are supposed to. Of course she does not have a functioning left side so, really the pulmonary veins did not have much choice but to try and attach to wherever they could. The repair she had done connected the confluence to her functioning atrium to allow the veins to dump where they are supposed to. What has happened is that where the surgery was done, opening up and reconnecting, has developed lots of scar tissue that is narrowing the veins. The veins are so narrowed that the blood flow coming through her Glenn is actually backing up and backflowing, causing her pressures to be way too high and her head to be puffy. The is also negatively affects her lungs. She will not have any long term damage as long as we can have this vein issue fixed or good as soon as possible. We missed that...we just thought all her weight gain was going to her head. Which, actually it has, but the difference in size between her head and rest of her body would not be as pronounced without this continued swelling. So, what the surgeon is going to do is basically clean out the scar tissue. My understanding is that this complication is not necessarily rare but it sure does not happen that often. The cardiologist is pretty confident (which is all we get here...no guarantees) that this will fix the issue. The sucky part is that he could not fix it in the cath lab and must be corrected surgically meaning C has to go through all the same stuff again: bypass, cracked open sternum, open heart surgery, chest tubes, arterial lines, central lines and pacing wires. All the super scary stuff again. And this time we do not have the same comfy feeling with C being in the best shape possible since she is so scrawny and does not have any reserves at all to fight anything should it happen.

So, while it looks like we will get to go home in the short term C will be coming back to the hospital next week. I am really hoping that C will be a total rockstar with this surgery as well and she will be able to be so strong and able to be discharged in one week again. Right now it looks like we will be having the surgery at St. Joe's in Tampa. Still a small possibility of going to ACH in St. Pete but more than likely we will be here at St. Joe's. As soon as we know the plan we are going with we will let everyone know.

I cannot even express to everyone how much all the kind words, good thoughts and prayers mean to us. C really needs the prayers. Each surgery is worse than the one before and there are so many further risks then the first time. I promise I am not trying to be so depressing but it has not been a great day.

In addition to all that is going on with C, C's great granddaddy (my granddaddy), is in the hospital again. He is 91 and is getting very frail. His issues right now are internal bleeding and the doctors are trying to figure out why. So... really this day has not been great. I am praying (and know) that tomorrow will be a better day. Tomorrow I will be positive.

And the News for Today - May 18, 2010

C is still in the hospital. She had a somewhat minor set-back last night and into this morning. Her face, neck, chest and arms all swelled really bad. Like Stay Puff Marshmellow, Jabba the Hut, taking way too many steroids bad. Her face and neck were somewhat swollen yesterday after the cath but nothing too concerning until this morning. Apparently the vein issue that was discovered yesterday along with all the fluids used during the cath have combined to create this huge amount of swelling. Fortunately her fontanel is still open so she had a small amount of relief but not a lot.

C was given a iv dose of Lasix (a diuretic) to help her pee off all this excess fluid. Yea for small things, it is working. Her swelling is decreasing but she is still swollen. Poor baby. She will continue on Lasix to help her get rid of the fluid.

Today we have seen 2 cardiologists, 2 arnp's, 2 pa's , one intensivist, and C's surgeon.

All agree that as long as C's swelling continues to decrease she will be discharged tomorrow. Let's all keep thinking positive that she pees and gets rid of this fluid. The plan is to let her go home tomorrow, see her regular cardiologist on Thursday, if something happens over the weekend, we bring her back to St. Joe's. Next Tuesday she will be back at St. Joe's for pre-op and she will undergo her 2nd open heart surgery on Wednesday morning, May 26.

Yesterday was all about the self-pity: anger, frustration, tear-hair out crying, cursing and saying "it's not fair!"

Today is all about being positive.

The good news is that the doctors did catch this through her cath. Her vein "obstruction" is related to surgery not due to a defect. Her lungs and the pulmonary veins going into them all look good and of normal size, so her lungs are good. She does not have any damage and if she did have any lung damage that will heal very quickly after getting her flow and pressures correct. Her surgeon thinks she will tolerate this surgery well and he has a plan to try and prevent this from happening again. He did not expect to see this scar tissue form but he has seen it before. This can be fixed.

We will be getting a feeding tube (g tube) for C prior to her being discharged from the hospital post surgery. She really needs the help and surgery will just set her back again. We all agree that it is time for C to be getting extra calories and we will make sure they get in her. The cardiologist that did her cath is very hopeful that getting her heart functioning the best it can (taking care of all the issues) will really help her eating. Kevin and I still think she has some GI related issues (constipation, etc) but with the g tube we can run all medicines through it and make sure she is getting everything she needs... such as the miralax to help get her regular.

C is one tough little girl and she is a fighter. She is back to acting like her normal self, minus her mongo head (and headache that comes with it). She is starting to actually sit up all by herself (and she is very proud of that). She is smiling and talking today.

Here's praying that she gets home tomorrow and we get a small break to gear up for her surgery next week. Sorry for the delay in updating but I was not prepared for C to be admitted to the hospital this time. One of these times I will learn my lesson and just bring everything. But, because I was not prepared (such a shocker for me since I am Miss Prepared) I do not have my computer and am relying on Kevin's work computer. Kevin has been trying to work as much of today as he can so I have not bothered him.

Thanks so much for all the prayers. We see them working for C every day. Oh, and C's great granddaddy was diagnosed early this afternoon with a treatable with medicine GI problem. Amen. He should be going home very soon. Let's all get C home as soon as possible too!

Sorry for the Delay - May 20, 2010

We are home. C was discharged yesterday around noon and after she finished trying to eat and we got all our stuff together we were out of the hospital. All the doctors agree that C will be safe at home until her surgery next week. The vein obstruction issue is a slow growing problem so we will not see any major changes over night but the issue is critical enough that she has to have surgery as soon as possible. Of course we do have our orders to call immediately if her swelling gets any worse or her breathing becomes extremely hard.

Lasik is a wonder drug. C is looking just about back to her normal self. She is still showing signs of swelling in her head, face, neck, upper body and chest. But, looking back now, she has been this puffy all along and we just did not really see it. Guess this does reconfirm that the pulmonary vein obstruction has been a very slow process with the growth of the scar tissue.

There has been a minor tweaking with the schedule for next week. C will be doing her pre-op work on Monday, May 24 and will be having surgery on Tuesday, May 25 all at St. Joe's in Tampa. We were hoping to do to All Children's but C's surgeon does prefer St. Joe's (even though he does not really say it) and we want to go where he is most comfortable.. The average stay post-op is one week to 10 days. If all goes as well as last time, C will be out in 5 days. That is what I will be hoping for but not what I am counting on.

For all who would like to know what the surgeon will be doing this time, here you go. C's heart and system are very complex (gee) and to try and get it all right takes a very fine balance. C's surgeon will be going back into her heart (her right atrium to be specific) and creating a much larger "hole" or space for the blood to be flowing through. Right now the blood flow back to her lungs is being done two ways. One, by her pulmonary artery (which is the normal flow we all have) and two, by her Glenn shunt (the first of two steps to reroute her blood flow to her lungs). When C had her surgery in December, the surgeon decided to leave her pulmonary artery attached to her heart because the thought was that her pulmonary artery was stenosed (narrowed) enough to not let that much blood flow through. And she was on the young side to have her Glenn done, being just under 4 months old (the time frame for the Glenn is 4-6 months of age). By leaving her pulmonary artery attached to her heart and allowing two flows of blood to her lungs has allowed her to not show any symptoms of this scar tissue build up. Her oxygen sats have remained very high for a post Glenn baby and she has not had any damage to her lungs. However, this has been creeping in and she is now showing the signs...hence the swelling, crappy eating and lack of normal weight gain...her heart and lungs are still working way too hard. So, the surgeon will go in and remove this scar tissue build up, try and do a suture less close (to help prevent future scar tissue build up) and also remove her pulmonary artery from her heart. Sounds pretty complex but believe it or not, this will be the easier, less complex surgery her surgeon does that day. Seriously.

All of the doctors are a little surprised by this but not at all unprepared for it. This scarring is not rare but it is pretty uncommon. Kevin and I are very glad she has not suffered any lung damage and although it will be extremely hard to hand C over to the surgeon again we know we will be getting a brand new C back. I cannot even imagine how much better she will be once this issue is fixed. She is a pretty happy baby right now. I told her that after this surgery is done, she will be so happy we will never see her frown ever (she is just that happy right now).

Of course there are all the same risks and complications all over again. She will be on bypass again. Her heart will be stopped again. She will have all the tubes and wires again. She will have her sternum opened again. Clots, strokes and embollisms are just waiting to happen. So, we are beyond scared. In some ways having already done this once makes it much harder to do again. I don't know why, you would think since we kind of know what to expect it would be easier, but it is not.

Good news, and here again we are hoping but not really expecting, is that the doctors really think her eating and weight gain will get better. We will still move forward to getting her a g tube (peg) so she can get some eating help (and boy does she need it) but with the goal of having it out of her as soon as possible. If her one cardiologist is correct, and she does what he would like to see, she will be eating like a champ in around 4 weeks and we may not need the tube after that. How cool would that be. But, we will take it one step at a time and see what happens.

Here is the best news yet. C has not vomited in 4 days. Not one bit at all. Yay! Maybe we are making progress after all.

Thank you all for all the kind thoughts and prayers and keeping us with us and C. This set back has been hard on all of us, including the boys. Todd gets scared and Kyle shuts down. We hate having them go through this again so soon but hoping that our prayers will be answered and we will all be back at home soon.

And the Other Shoe Drops

2010-05-21T11:29:00.003-04:00

I think this is what I have been waiting for and dreading. I am not typically an optimistic person. I do not always see the glass as half full. I do not think I am a particularly negative person either. I certainly do not walk around all day, every day lamenting that the sky is falling. I believe in reality. And the reality today is that C will be going back into the OR May 25 for her second open heart surgery.

All along, from the very beginning, all I have wanted for C is for her to enjoy her life. Have fun, be loved and pampered. Hugged and kissed so much that so begs you to stop. To get a chance to be a "normal" baby, toddler, child, teen, young adult and hopefully more without having to constantly worry about what next. My biggest fear has always been that all she would know and remember would be pain and suffering. I have never wanted her life to be dominated by scary things and pain. I have prayed over and over for something very simple...please God, do not let her suffer.

C has been home with us for over 5 months since her TAPVR repair and Glenn. She has been happy and content. Until recently.

Unbeknownst to us, she has been growing insidious scar tissue from her TAPVR repair. Enough scar tissue that she now has pulmonary vein obstruction. Our first inkling that there was a real problem with her heart was 3 weeks ago at her cardiology appointment (well, that and her continually crappy eating which kept us going to the cardiologist and GI doctor). She was originally not scheduled to get an echo. Kevin insisted. C's cardiologist saw something of concern. We scheduled an appointment with the invasive procedures cardiologist. He scheduled a cath and C underwent that procedure May 17. He originally was not expecting to find anything big. He did think he would find some small issues and did prepare us for that. We were not as prepared for an immediate admit and that she needs surgery as soon as possible.

Thump.

The shoe hit my head.

I am not mentally prepared for her to have to another open heart surgery right now. She was supposed to be good. No more surgeries until her Fontan around 2 years of age. She is not supposed to have two open heart surgeries before her first birthday. But, she will. Originally I was prepared for C to have two surgeries. She was possibly needing a BT shunt and banding. But she did not need it. She was possibly needing to have her TAPVR repair first and then her Glenn a few months later. But she had them both in the same procedure. So, really? Scar tissue? Seriously? Scar tissue?

There is really nothing that could have been done to prevent this. It just happens. Not exactly rare but not exactly common. Totally sucks.

I have already had my day of self pity. The day of my self pity I was not choosing to be positive, because damnit, this is not fair. But from now on I will be positive, scared out of my mind, but positive.

C was admitted to the hospital Monday on the hope that she could have surgery Tuesday. But, her surgeon has been and still is super busy with surgeries this week. Unfortunately, there are a lot more much sicker babies than C, and knowing that breaks my heart. So, in the interest of keeping us all sane, the doctors all agreed that C could go home until her surgery. Keeping us in the hospital on the chance of a surgery spot opening up was not doing any of us any good. However, keeping us in the hospital for a couple of days did prove to be the best thing since C swelled up like Jabba the Hut after her cath. The pressure building up in her lungs because of the vein obstruction, plus the blood flow going to her lungs from not one but two sources (her pulmonary artery is still connected to her heart) has been causing tons of fluid build up and pressure build up in her Glenn. C is on Lasix now and has gotten rid of pretty much all the fluid.

We all got home Wednesday and have been trying to have as normal a life as possible until next week. C missed home. She missed her brothers. She missed everything about being a "normal" baby. I pray that she will return home with us once again so she does not have to miss any of these things permanently.

The GI Update

2010-05-12T11:04:00.000-04:00

C had her appointment with the GI doctor yesterday. This is appointment number 2 in the ongoing saga to figure out a way to get C to eat and gain weight.

We chose to go back to the third of the five GI doctors we have seen. Breaking from our typical fashion, we chose the GI who is the youngest of the 5 we have seen. Generally Kevin and I pick the older doctors because we feel more comfortable. I know, just because they are older does not mean they are better. However, our experience so far has been the more time the doctor has been, you know, an actual doctor, the better. Of course there are always a few exceptions. One exception being C's total rock star surgeon. Adding to my reserve in picking the younger GI doctor is that I learned from the first time I saw him that he went to the same high school as me. Although we were not in school at the same time, he is close enough to me in age to make me feel weird. Don't know why, maybe I am just get old.

Anyway, the GI doctor is actually good. Both Kevin and I are happy with his thoroughness and his actual listening and talking to us. We now have a new plan to proceed with.

1. We are giving C Miralax. This is a stool softener/laxative to help her with her seemingly endless, horrid constipation. The GI thinks C has associated lots of pain with trying to have a bm and now will not go because it hurts and the more she does not go the more it hurts. A total vicious cycle. Hope that with the laxative she can get some relief and learn that it is ok and not terribly painful to have a bm. Here's the catch...there is always a catch... the laxative powder has to be mixed at the rate of 1tsp per 1ounce fluid. For a normal baby not so bad...for a baby who flat out refuses to suck off a bottle or a sippy cup and has a huge problem taking a lot of fluid volume in the first place, this shall prove to be near impossible. She is prescribed to take 2tsps of powder mixed in 2ounces of fluid twice a day for a total of 4 additional ounces of fluid. If we could figure out how to get C to drink 4 ounces of fluid off a bottle or sippy we would not be seeing the GI doctor at all because C would be intaking enough volume and therefore gaining weight like she should be. We are trying to figure out the best way to get this in her.

2. The GI did suggest upping her Prevacid to twice a day which would mean giving her a full adult dose. Not too sure about that. And we are following the advice of the GI at Shands who told us to make only one change at a time. So, we are trying the Miralax first. The reflux continues to be an issue of does she have it or not...because she vomits and exhibits other classic signs the docs all learn towards yes but C continues to baffle because she shows no internal signs of reflux based on all the GI tests we have done. Gee. C baffling. Tell us something new.

3. The GI doc did a brief rectal exam..yes it looks as unpleasant as it sounds...and he did say that everything there appears normal. He does want us to do a sacral ultrasound because C does have a swirley dimple thingy right at the top of her hiney. He does not really think there is an issue but just wants to check to make sure her spinal cord is not all screwy down there.

4. And the big one...C is being scheduled to have a G feeding tube placed. If there is an upside to this here it is...the tube will be placed endoscopically by the GI doctor. Although C will have to undergo anesthesia again she will not have to have another abdominal surgery. The GI doctor will insert the scope down C's throat to get to her tummy. When he sees a good spot for the tube he will insert the tube through the skin in the tummy. He explained it as similar to an earring. The tube will loop through the skin into the stomach. This is called a peg button. I will stop here as trying to explain the whole thing is just confusing. Suffice it to say that this is the easier way to have a tube placed. Of course this is dependent on cardiology saying okay to this type of tube and tube placement. Originally C's cardiologist wanted to have the surgically implanted tube and also a Nissen wrap fundoplication. I am so not on board with the wrap. Lets just say it is like tying the end of the balloon up so nothing can get out...C would not be able to vomit. I have read all kinds of horrible side effects from this and do not want to have this done to C. The cardiologist recommended it because of the vomiting. He does not want to risk her aspirating. If she aspirates, she dies. Aspiration is breathing fluid/food into the lungs. The thing is, not one doctor or therapist (and we have seen and talked to many in the realm of the GI world) thinks C has any risk towards aspiration. In addition, because C shows no damage from the reflux and there is still debate on whether she actually has it or not, the GI doctor does not recommend the wrap due to reflux. C's pediatrician is also against doing the wrap. Now we just have to see what her cardiologist says tomorrow. If GI is able to get clearance from C's cardiologist and the cardiologist is okay with her doing this so close to her already scheduled heart cath on May 17, C could be going to the hospital this Friday, May 14 for the placement of the feeding tube. It will be an admit with an unknown time for discharge. I will keep everyone updated on how the schedule works out and when C will be going to the hospital for the cath and the feeding tube.

This email is already way longer than I wanted. I have another whole email I could write about how I feel about all this but I am pretty sure I will spare all of you and just put that up on my blog :) Needless to say I am very unhappy about having to miss out on the wonderful birthday festivities my husband had planned for me this weekend and I am very sad that after almost 9 months of my little HLHS baby being one of the few to not need a feeding tube we are getting one after all. However, I am VERY happy that C's body will finally be getting what it needs to grow and thrive. And that is what this is all about.

Thanks again for all the prayers for C. They are working. And for all who do not know yet, C has her very first tooth. She has the cutest, heart melting, snaggle tooth smile now.

One Down, Two to Go in Search of Better Eating

2010-05-10T14:51:00.000-04:00

C had the first of three appointments stemming from her last cardiologist visit April 22. We met with the invasive procedures cardiologist (my own made up title for this doctor) this past Friday. After reviewing the info from C's main cardiologist and talking to us about C's eating, he wants to do another heart cath. C is scheduled for her cath on May 17 at 9am. We have been told to expect at least 3to 4 hours for this cath. The cardiologist will be looking at every little thing going on with her heart. There is still some thought there may be some obstruction on her pulmonary veins. If there is I am really hoping he can fix this with a cath. If he cannot then C will more than likely be scheduled for another open heart surgery.

However, before I continue on, I must make clear that this is all still speculative. C's main cardiologist and the cardiologist we saw Friday are not 100% sure there is an issue with her pulmonary veins. The cath will tell us for certain. Also, even if there is an problem that needs to be fixed with surgery versus during a cath then she may be able to wait until her next surgery around 2 years of age. So, there are still a lot of unknowns at this point and as usual, everything remains very fluid.

Tomorrow, we take C to see the GI doctor again. Kevin is concerned that the GI doc will be a waste to time in that the doctor will tell us he wants to wait and see the cath results. So frustrating. I am hoping that will not be the case and he will actually move forward with getting the GI issues resolved, even if that means getting her scheduled for surgery to place a feeding tube.

Thursday we see C's main cardiologist again to go over all the new info from the other two appointments.

The goal at this point is to figure out the best way to get C to eat, gain weight and thrive properly. Cardiology is doing everything possible to rule out C's heart function as the culprit behind her crappy eating. Cardiology is still saying they really believe C's eating issues to be GI related but they are going to look at absolutely everything to make sure C has good balance as far as blood flow and function.

I have already been told that there may never be a real concrete answer to C's eating issues and therefore no concrete solution to fixing them. She has so much going on that each little bit that negatively affects her eating can all add up to one big problem and some issues, such as reflux, are things she will need to outgrow.

While we are not thrilled with having C undergo another heart cath right now we were expecting this to happen. She will go to St. Joe's in Tampa and we are praying that there will be no other issue with her heart and she will be able to come home that day.

Thanks for still keeping up with us and praying for C. I think about all of you all the time and am so grateful for each and every one of you.

Our Words for the Day...

2010-04-23T10:11:00.003-04:00

Radical and Nuclear.

Oh dear.

We are out of time. C is not growing like she should. She saw her cardiologist again yesterday, only 1 week after her last appointment, and he is really not happy with her progress.

At 8 months old C weighs around 13lbs, 5oz.

Yep. She is that tiny.

Although she has continued to gain small amounts over the months she is really not thriving. Looking at just her head she looks to be around 7 months (not bad) but when you look at her body from her chest down to her skinny chicken legs she looks to be around 3 months (very bad). Everyone is worried. Everyone.

Her eating is still atrocious. She refuses to take a bottle when she is awake and barely takes the bottle when she is asleep now. Her actually latching and sucking down a full bottle while she was asleep has always been our safety net. Now, she is refusing to eat a bottle at all and she is beginning to refuse her spoon fed items as well.

C does not have any mechanical problems with eating, sucking or swallowing. She does not aspirate. She has a great suck reflex. She has can suck, swallow and breathe just fine. There is no structural issues with her mouth, palate, tongue or uvula. She likes the taste of food (fruits, veggies, yogurt)...can't say she likes the taste of formula that much but can't really blame her there. She has not shown any real signs of being allergic to milk, the milk protein or of being lactose intolerant.

She just refuses to eat enough to make her grow.

C does have tons of gas issues which we think greatly contribute to her problem. She seems to be in a constant state of constipation with lots of grunting and straining. We still think she has issues with motility (her food not moving through her system fast enough). We know it does eventually move through we just question if it is fast enough for her. We also still suspect she has reflux although her vomiting is greatly reduced from what it was. However, she is not eating like she was either. We have decided to stop forcing her. When we do not force her she does not gag therefor no vomiting. She is still taking Prevacid everyday and maybe that is helping. Who really knows at this point? We certainly don't and apparently neither do her doctors.

So, the time has come. We are talking feeding tubes. We have a lot of appointments coming up in the next 2 weeks. We are to see another cardiologist in the same group for a second opinion. Our main cardiologist wants to make absolutely sure that C's main eating issues are in fact GI and not heart related. We have seen this other cardiologist several times and really like him. He does all the heart cath's and other invasive procedures and did C's heart cath back in November. We see the GI doctor again (we are going with the 3rd GI doc we saw...I know, I know its is hard to keep up). He is the youngest of the bunch but I felt he actually took the time to talk to me and was somewhat engaged with what was going on with C. C's main cardiologist and C's pulmonologist both like this one GI doctor so we will give him a second chance. However, if we are uncomfortable at all with him you can guarantee we will go somewhere else before anyone does anything to C.

After we go to these two appointments we meet back with C's main cardiologist and discuss the options. We also meet with C's pediatrician as well.

Don't you want to be us right now????

The main problem with C not eating like she should is that her other systems are beginning to be affected. Nothing big right now but it could become a huge issue if she does not start putting on weight. Also, her immune system is already compromised and with no extra weight on her she has absolutely NO RESERVES to fight off any infection. As her cardiologist says..she is fragile. Very fragile.

I know a lot of you probably have no idea what I will be referring to here but there is a line from the movie Dirty Dancing that I just keep thinking of over and over that perfectly describes where we are..."Baby, I am balancing on shit and as quick as that I can be at the bottom again." There you go...C in a nutshell. Except her bottom is serious hospital time and possibly not pulling through.

The other fun part of her visit yesterday is that her cardiologist thought he saw some possible obstruction of her pulmonary veins. Seriously. These are the same veins that were repaired back in December along with her Glenn surgery. We are really, really, really hoping that there is no obstruction there. If there is then we are looking at some more invasive procedures being done. Our biggest concern right now is that the cardiologist we see in 2 weeks will want to do another heart cath just to check both...her function for the lack of eating and the pulmonary veins. If there is an obstruction we are soooo praying that it can be handled in the cath lab and not with another open heart surgery. Ugh.

We have a lot to work through right now. Deep down inside I still have a small bit of hope that C will just turn her eating around and start gaining the weight before we have to actually place a tube. I am really not looking forward to more tests but we are absolutely going to insist on having everything re-evaluated and some possible new tests run to make sure that placing a feeding tube is the right option. This is not something that will be happening in the next few days but C's cardiologist wants to have a firm plan of action in place in the next couple of months.

Radical and Nuclear. I think we are getting it.

Oh These Baby Seats

2010-04-11T11:43:00.002-04:00

At least she is not falling out of it this time. She is mad at me because she has not yet figured out how to wiggle out of the seat with the tray on. Guess that is why she finally gave up and went to sleep. C does not do anything normal :)

Happy Easter 2010

2010-04-11T11:19:00.004-04:00

Opinions, opinions, opinions

2010-03-26T22:02:00.001-04:00

Today we took C to Shands in Gainesville to get a second opinion from a pediatric GI doctor there who is very highly regarded. His office was very good to us and got us an appointment as quickly as they could and today was the day.

Can I just say, traffic right now is just CRAZY. Totally unbelievable how many people were on the interestate today. Holy cow.

Anyway, we met with the GI doctor and he was very nice to us. He listened to what we had to say and did an exam of C. He took well over an hour with us. But....you all did know there was a but coming, didn't you? But, he was not able to really offer us any more answers than what he have already received. We do have a type of plan of action which is what I requested from him but it does include some things we have already done.

So, the following is the breakdown:

1) He did not think the results from the ph probe C had were entirely accurate. He thinks that C does have some reflux. Her reflux may not be as severe but she still has some. He wants us to try the Prevacid again and see how she responds. He does not like the Reglan she was taking before and does not prescribe it at all. He says there are a lot problems with it and it can actually cause vomiting. He thinks the Prevacid will help with the vomiting and emptying. Which brings me to...

2) He thinks she may indeed have some gastric emptying issues. He would like to see a small bowel study (or flow through) test to make sure the food is actually able to go all the way to her colon with no narrowing or obstructions. This could also explain all the noises we hear her little tummy make and the pain that she has when eating.

3) He thinks we may need to try a different formula. This time one that is even more broken down than the Alimentum she is currently on. Plus, these other formulas may taste a little better than the Alimentum. Honestly, I do not think there could possibly be any thing worse than the Alimentum...this stuff smells like dirty, old sweat socks that got stuffed under the bed for months. Horrid. C is now at the age when she is really developing taste so that could be an issue.

4) He is worried about her weight gain as C is now showing a plateau or flat line on her growth chart. As long as she was tracking an upward curve it is not such a big deal (even with minimal gain) but when the curve stops going up there is a big problem. He said he would not go much past another month if C continues with her flat line and no upward curve.

5) And the main thing, he said it really depends on how aggressive we want to be. If we decide that we cannot do what we are doing anymore to feed her and/or her weight gain continues to plateau then we would need to look to do tube feedings.

Sooooooo, all in all pretty much the same stuff we have heard before. When he examined C he thought she still looked pretty good. At least he did not say to just keep doing what we are doing..at least not in so many words. And, the best thing was that he gave us his contact info and told us to call if we have any questions or would like to see him again.

Next step will be to see what C's pediatrician and cardiologist say with all this information from the second opinion. I am thinking that when we see both of them again in 2 weeks we are going to see more forward movement.

I really did not expect to have the GI doctor wave a magic wand and say yep, I can fix her but I guess I was kind of hoping we might get something more. But, at least he was very nice to us and really did want to help us.

Today was very long for all of us...12 hours...with most of that in the car. Poor little C was not exactly sure why she had to sit in her seat for so long. By the last hour she was done. Really, really done. Think we will be staying closer to home from now on :)

March 18

2010-03-18T10:31:00.006-04:00

One year ago today.

At 17 weeks and 3 days pregnant with my third baby, I went to Maternal Fetal Medicine for my second check-up and ultrasound (my 3rd ultrasound at this point). Having already received a very good report at my 7 week and 11 week ultrasounds I was not expecting anything unusual. I was actually thinking, gee why do I even need to be here. I have had two healthy children already and so far there is no indication that this baby is anything but healthy. Kevin went to the appointment with me because we knew there would be a really good chance we could learn the gender of the baby that day. Plus, he liked going to the ultrasound appointments with me so he could "see" the baby too.

I remember exactly what I was wearing and even how I had my hair done. I remember thinking that I would soon need to pull out my transition and maternity clothes because my regular clothes were getting way too tight. I had on a knee length denim skirt, a beige camisole and light green tshirt. I was thinking how silly of me to wear my one green shirt that fit me the day after St. Patrick's day. My hair was short and somewhat blondish looking because of highlights.

I went through the normal routine of being weighed and blood pressure checked. I returned to the waiting room and waited to be called back. When the ultrasound tech was ready we followed her back to the room. The first question she asked us was whether or not we wanted to know the gender of the baby. I was excited and said yes..if she could see it clearly. Kevin was still a little on the fence. We did not find out with the boys and waited until delivery. I was pretty adamant that I wanted to know this time because my biggest worry at that point was that I was going to have three boys and how in the world would I handle three boys.

Amazing how quickly those thoughts become so trivial.

I got on the table and the tech began doing the ultrasound. She checked immediately and told us the baby was a girl. Kevin and I were both speechless. The tech was joking about how it was very easy to see because the baby was sitting with her legs wide open. Kevin joked back that it was okay now, but by the time she was 16 she had better not still be sitting with her legs wide open. I think I even got a little teary. I was thinking, oh my goodness, my mom is going to be so thrilled...she is getting a little granddaughter. How cool is this that we are getting a little girl. She took a few pictures and put "girl" on them, including the picture with her legs spread.

She then proceeded with the ultrasound and I could just tell there was something wrong. She kept looking at the heart. The ultrasound techs are generally not allowed to say anything to you about the health of the baby because that is up to the doctors to do. However, I could sense there was something really not right. Besides looking at the heart over and over and over, she was really quiet. Way too quiet. When she left the room my heart dropped. I felt sick. I knew we were not getting good news. I just kept repeating to Kevin that the tech kept looking at the heart and that cannot be good. Kevin, being the eternal optimist, told me to quit worrying that he was sure it was nothing big.

When the doctor came in I was certain it was bad. The techs do not get the doctors in the middle of the ultrasound unless there is something really, really wrong. The doctor introduced himself and looked with the ultrasound himself. He left the room saying he would be back in a few minutes. When he returned he gave us the most horrific news. The baby we now knew would be our daughter may die even before delivery because the doctor could see several extremely severe defects. Really, really, really scary, lethal heart defects. To say that this doctor has no bedside manner is an understatement. He could not or would not really answer our questions and the only option he really gave us was termination. I literally could not move for a good 10 minutes. I wanted him to take it back. I wanted him to say that is was okay and that our daughter would be fine. Fortunately, Kevin was not as dazed as me and when he heard termination he immediately went into fight mode. There was no way we were going to terminate this pregnancy, this little girl, our daughter. We got the mfm doctor's diagnosis of aortic atresia, vsd and one other defect I can't remember now. Kevin then demanded to know where we could get a second opinion. The mfm doctor gave us the name and number of the man who changed our lives and gave us hope.

The rest of the day and night we were stunned. We honestly did not know what to do or even how to tell people. I just kept praying for it to not be real. For God to heal this tiny baby and that everything would be fine. She would be healthy. I kept thinking the doctor just did not see it correctly. My baby girl was not in the right position, she was squished up against the wall or that they could not really see her heart. However, none of that was true. The mfm doctor did see the problems. Kevin called and got me an appointment the very next week to see the fetal cardiologist in St. Pete.

When we got home we researched what the diagnosis was and realized that aortic atresia is most often lethal. Since everyone knew we had an appointment that day Kevin and I had to try and find a way to start calling people. I knew if my mom did not hear from us soon she would be tracking us down. I tried. I tried to tell her. I could not stop crying long enough to be coherent. Kevin had to tell both of our families and friends.

I remember all these details so specifically.

Over the last year I have learned more about the human heart and development in babies then I ever wanted to know. I have seen more sick babies then I have ever wanted to see. I have seen families devastated by the just delivered news that their child did not make it. I would be lying if I said that everything has been great. I was (and still am) scared pretty much all the time. I get sad every time I see my friends babies who are around the same age as C and realize what a normal healthy baby they have and that C will never be normal. I get sad all over again when I have to explain yet again that there is no cure for C and I see the understanding finally click and then I see the pity. I cannot stand being pitied.

There are days, when I am at my most lowest point, when I wonder if I should have taken the easy road. We did have the option to terminate the pregnancy. I struggled then and I struggle now with knowing that I thought about choosing that easy road. I struggled then and I struggle now with being admired for my strength and character. Most days I do not feel I deserve to be admired by all these wonderful people.

And yet, even knowing I thought about choosing the easy road, I chose to fight for my tiny unborn daughter. I wanted to find the best care, the best doctors, the best surgeon and the best hospital. I resolved to do everything I could to give my daughter the best chance once she was born.

One year ago today.

Conversation about Leprechauns with Kyle

2010-03-18T10:19:00.003-04:00

Yesterday, the boys school was letting the kids dress down (ie no uniforms) to celebrate St. Patrick's day. So, Kevin let the boys wear and bring all kinds of silly St. Paddy's day stuff to school. The boys learned about St. Patrick and also about leprechauns. You know all the silly little tidbits we all know...how leprechauns are really fast, and like to play tricks and leave pots of gold at the end of rainbows. I guess they also learned that leprechauns are small.

I picked the boys up from school yesterday and Kyle tells me all about his day and how he learned about all the silly things leprechauns do and that the leprechauns did silly stuff in his classroom while they were out playing. He then asks me, "mama, are leprechauns real?"

I ask him back if he is thinks Santa, Easter Bunny, etc. are real.

He says yes, he thinks they are real.

Then I say, well leprechauns are like that...they are magic just like Santa, the Easter Bunny, etc.

Kyle then says with a quite disbelieving voice, "but leprechauns are tiny and I do not think tiny people are real."

At that point I just gave up...of course after laughing.

CHD Awareness via NASCAR! Help vote us in! (Please share)

2010-03-11T13:23:00.000-05:00

CHD Awareness via NASCAR! Help vote us in! (Please share)

The Latest and Greatest

2010-03-10T11:19:00.000-05:00

C had another upper GI scan last Monday, March 1 (her first scan was after she was born and she was a couple days old). After this scan was done we waited to hear from the GI doctor if there were any issues and what suggestions/plan he would share with us regarding getting C to eat better.

Yea...that was a good idea in theory.

Here is the latest rundown in short form:

1. Kevin did finally speak with the GI doctor after speaking with the nurse many times. The GI doctor told us there is nothing wrong, GI wise, with C. He told Kevin that the ph probe showed no acid reflux, the gi scope showed no acid damage, the gi scope also showed no anatomical problem. The biopsies came back normal. The upper GI scan showed no issues. Ok, that is great but can you think of any other reason (besides her heart) why she is not eating well and vomiting A LOT? His response...wait for it...colic. Ummmmm, is that what you are going to go with? Colic? Are you kidding me? Yep. That is what he said. He also said that he does not think she needs to have lower GI testing and that she does not need a feeding tube. This should all be good news and in a way it is...except we still do not have an answer (which we are slowly coming to accept that we may never have an answer) but we also do not have any suggestions or a plan of action. When confronted by Kevin on why he had not taken the time to speak with us personally he pretty much said he could refer us to another GI or we could see another doctor in his group.

2. We took C to her Cardiologist yesterday, moved her normal appointment up by almost two weeks so we could address all this with him. He again reiterated that he does not think her heart is the major issue with her eating. Great. He even did another echo just to check stuff out. Asked if we would like to have a second opinion on the GI stuff. We said YES!

3. Due to my great friend SJH we are moving forward with getting an appointment with a pedi GI doctor at Shands. We will see what this doctor says and go forward....hopefully with some suggestions and/or a plan of action.

4. Saw C's Pediatrician today. Although she is tiny he is not over the top concerned yet. She is still gaining and we are being assured that her heart function is great. He is really hesitant at this point to place a feeding tube if not 100% necessary.

5. Kevin scared the crap out of me yesterday during C's echo when some fluid was found. He thought her peri-cardial effusion had returned and that could explain some of the crappy eating. Ummm no. This is why I should not listen to him sometimes...Her cardio said there is a tiny bit of fluid between her heart, diaphragm and top of lung. He said it could be anything including a little cold. He is not worried. I could have very cheerfully strangled my husband for freaking me out.

6. I did call and speak with the nurse coordinator at Children's Hospital of Philadelphia. They have a specific program for kids with C's main defect...single ventricle. However, we will be staying put with C's care, here in Florida, for the time being.

7. Went to C's second visit with feeding therapy and she is saying her issues are not behavioral. Well that's just lovely.

So, all in all I am super happy that there does not seem to be anything else wrong with C's make-up (outside of all the screwiness we already know about). However, we are still searching for answers.

Today C weighed 12pounds, 13ounces. She will be 7 months old on March 19. For all you mama's out there go pull out your baby books and you can see just how tiny C is. Her pedi said today she is "petite" and her cardio told us yesterday that there is nothing wrong with small people. I am just glad she is a girl! :)

One last thing...this is typical Carolena. She is "finding" her voice right now and babbling and screeching quite a lot. When we were waiting to see her cardio Monday I noticed that she seemed to be the only child there (with the exception of one other 2 year old) who was not just sitting sedately in their parents lap. Oh no. C is moving all around, laughing, talking, trying to get people to look at her, screeching at them when they are not paying attention, smiling at them when they do look at her. I remarked to Kevin, seriously, we have a child with half a heart and we still do not have a sedate child in our little bunch. If you know our boys at all you now how crazy wide open they are! Guess she just feels she needs to keep up...;)

The GI Series #5 - Back to Square One

2010-03-02T22:35:00.002-05:00

We are very frustrated right now.

C is still not eating and is in a lot of pain. The GI doctors office has called twice and told us there is nothing wrong with C's GI track. No acid reflux, no ulcer, no acid damage, make-up is just fine and fluid and all is moving just fine. Actually the GI office has only called once. We had to call today to see if there was any info from the scan Monday. We still have not talked to the actual doctor. The nurse actually told us today that it looks like the eating issues are heart related and referred us back to her cardiologist. The whole reason we have even seen a GI doctor is because her cardiologist has said from day one that her eating issues ARE NOT heart related. There may be some minor eating issues related to her heart but not the major issues we are dealing with. We do not feel that the GI doctors are listening to us and that there is something wrong with C's make-up that is making eating miserable for her.

I contacted our pediatrician today (almost in tears) to get his help. Fortunately he is great and will help us. He is not going to let C get in a danger area, at least I don't think he will. I am beginning to loathe all these doctors. I HATE the finger pointing. And I really HATE that the GI doctors seem to be the only ones who are not on board with what we need with C. Kevin and I would love to just stop doing all we are with C. Fighting with her for every feeding. Stressing her heart with every feeding. Seeing her in pain. Hearing her crying all the time when she is eating. It is horrid. But we just will not give up on her. We will continue to do what we are because she needs to eat and we have to be the ones to make her...no matter how much it tortures us as well.

So awesome.

I am seriously going to cry.

Right now Kevin and I are weighing our options and seriously considering taking C to CHOP (Children's Hospital of Philadelphia) or Boston Children's Hospital. Both these facilities are the best kids heart hospitals in the country. I have no idea if these are even feasible...will my insurance pay, how do we arrange travel and care of the boys at home, will we get to see the best doctors? Plus, I am out of leave at work and who knows how long we would need to be there. But, we want the best for C. We are still open to finding someone in Florida but our options are smaller with each doctor we see and cross off the list. Any suggestions would be so greatly appreciated. If anyone has any type of in with a great pediatric GI and could get us in to see them I will be eternally grateful. I am not above begging at this point. :)

Other than this latest round of crap with the GI's we are doing well. For every thing C is going through she is still the happiest little thing. She smiles at us all the time and is really laughing now. She LOVES to play and, of course, to be held. The boys are doing great and school is going so well for them. They each keep bringing home awards. Kyle is really loving gokart racing (even though it scares me silly) and Todd is doing great with Tball. We are determined to have as normal a life right now as we can and we are doing pretty well at it... at least most days :)

Thank you again for all the prayers and good thoughts being sent our way. I am so very grateful to everyone who continues to keep up with us and to all those who help us out.

The GI Series - #4 - Revelations

2010-02-26T13:59:00.000-05:00

Gee, guess what? C does not have reflux. What you say? You have been giving her meds and treating for reflux now for 4 months and now there is no reflux? Yep. That would be correct. Not one tiny, little bit of reflux showed up on any of the biopsies or the ph probe.

Nothing at all.

Wow.

Awesome.

So, where does this leave us? Well we are not exactly sure. Kevin got the call from the GI this morning. We are scheduled for another nuclear medicine scan...this time of her GI track for Monday, March 1. Our understanding is the doc is looking for any kind of blockage.

Stay tuned for the next turn of events.

If you hear a very, very, very loud explosion from down in our area...that would be mine and Kevin's heads exploding because they did indeed find a blockage. And that is something we have been telling ALL the doctors forever that we think the problem is. If there is a nuclear type of explosion that will be us as well if they tell us C has to undergo another GI surgery when this all could have been corrected in the first GI surgery she had at 8 weeks old.

Now, I must go love on my sweet little girl who is all out of patience with me ignoring her....ha ha.

The GI Series - #3 - After A Good Night's Sleep

2010-02-26T13:46:00.001-05:00

well, at least for me..not so much for Kevin. The new hospital is much better at being family friendly and Kevin did have a decent place to sleep in C's room. The lack of sleep comes mostly from C's eating schedule. Since she eats at 11:30pm and 5:30am there is not much time to get sleep in between. Usually I do the 11:30pm feeding and Kevin does 5:30am but with only one of us (Kevin) staying with her in the hospital overnight he got to do both feedings. He volunteered to stay with her because he is just sweet like that. Plus, he knows he can get by with less sleep than me. I will make it up to him tonight though and make sure he gets to sleep early!

C is doing fine. She was her usual self over night with eating. She is having a lot more pain than she had been because she has had to be off her reflux meds (prevacid and reglan) for several days in order to get an accurate ph probe. She cannot be taking meds to reduce the acid when they are trying to measure how much acid she produces. So she has been in pain which makes feeding her much more difficult than usual.

Poor Kevin was also here this morning when the GI doctor came by. When I spoke to Kevin shortly after that visit I could hear the frustration in his voice. I think he said the GI docs are useless. Not sure we would really go that far...but it is frustrating when one one hand you are being told you are doing everything with her feeding wrong but on the other hand to keep doing what we are doing because she looks good. So weird and very frustrating. Unfortunately, the GI docs get kind of a bad rap. Much of what they see and try to treat, like reflux, is not something that can be cured. They can give meds to help with symptoms but they cannot make it go away. Only time will help with that. This all leads to finding the right balance of meds, caloric intake and fluid volume intake in order to keep C growing like she should be. Right now C is not really taking in enough calories or fluid to keep up with what would be consistent in a normal baby much less the increased volume she needs because her heart is working harder than a normal baby's. Somehow, up to this point, she has still been gaining weight but we are in a danger area now. She is at the bottom of the growth charts now and she is in danger of falling off. Once her head shows no growth we have reached critical status. We are not quite there yet but we are doing all this to try and avoid getting to that point.

On the positive side, C does not have any damage to her interior from acid. She does not have an ulcer and her esophagus is not inf lammed. Not sure if that is from being on the reflux meds already but it is good that there is no damage. The biopsies along with the results from the ph probe will be able to tell us a little more info about the reflux. The biopsies will also tell us some other stuff like allergies, etc. (Please forgive me if I am repeating anything I said in yesterday's email...lack of food and hunger tend to make me loopy). The best part is that the ph probe comes out in about 15 mins and after that we can go home. Yea! She did not get put in the cvicu, just the regular floor so there is no one other than GI to get clearance from. If GI says we go home then we do. So, we are actually looking to be out of here soon and even better...be home soon.

Well, the nurse is here to start removing the probe and C is crying so I need to go. Thanks so much for all the support and prayers.

The GI Series - #2 - Why Are We Here Again?

2010-02-26T13:43:00.002-05:00

Oh yeah. To try and figure out why C is not eating. To see if there are any anatomical gi issues and/or seriously bad reflux. And well, that just did not happen today. I keep hearing that the very definition of insanity is to do the exact same thing over and over and expecting to get a different result. I think at this point...Kevin and I are completely past insane.

However, C is doing well. She did fine with the anesthesia. She actually did not need the full anesthesia (the paralytic part) and really needed just the heavy sedation. The anesthesiologist did not even intubate her this time. Just was not necessary. Very good thing. We did see the GI doc after the scope and what he showed us is that she is basically fine. So. Great. He did take 3 or 4 (not too sure as I was about to pass out from hunger by this time...get to that in a moment) tissue samples that he sent out to biopsy. Takes about 3 to 5 days to get the results back from pathology. He was explaining all the different things he is testing for...again the hunger thing so I did not catch all but did hear allergies and some other stuff. He does not have any answers right now. Awesome. And even better...he can't tell me what happens next if her GI track is in fact just fine like he thinks (no blockage) and there is no real reflux (she is currently showing no signs of acid damage or ulcer or anything). Again...awesome. So, it seems like we are at the point of ruling out what IS NOT the problem. Kevin finally got to experience my pain when the GI doc said to just keep doing what we are doing...I do think Kevin even mentioned that he wanted to strangle the doc. Hee hee.

C was her usual happy self all day. Even with the 2 hour delay because of really ridiculous (I am tyring to be nice and not call anyone names) scheduling people. First, she was scheduled for her procedure at 12:30pm. Really...a 6 month old baby not to go until 12:30pm. Come on. Second, as you know C is a very hard little one to get an iv into. We told the nurse and everyone else this. You would think we would know at this point...you would think. As usual they don't listen. The iv team came up at noon to place the iv. Really? 30 mins before the procedure? Are you kidding me? Stuck her twice and called it a success on the second one. I was telling them it was not right. She does not keep screaming in pain after the iv is placed if it is correct. Again...no one listening. I even told the anesthesiologist this when we finally saw him. Guess what? I was right...again. The iv was not right and she has a different one. Fortunately she was already sedated when the anesthesiologist placed this iv. He said he would sedate her first and try the one iv and if it did not work would place a new one.

Two months ago I did not think there was a better place to be than All Children's Hospital. I was so super happy with our experiences here. I can tell you, after today I think I will be going to St. Joe's in Tampa from now on. The complete and utter stupidity that we have had to deal with today would test the best of people. From being scheduled so late to start with to then getting here and being delayed two hours why the figured out how to get a cardiac anesthesiologist because that is what C needs to the miscommunication to the leaving us to sit for an hour and a half with no communication with what is going on. Complete and utter stupidity.

I am still very happy with the care C is getting. The nurses are awesome and I do love all C docs. This hospital though...I have some choice words for the admin here.

I really did want to post earlier and let everyone know what was going on but I just could not get to my computer until now. Shoot. I JUST got to eat "lunch" at 4:30pm. Grrrr. Stupid hospital.

Anyway. C will be here until tomorrow afternoon. She has the ph probe placed and we will be monitoring it for 24 hours. GI doc will interrupt results once he gets them. She is not going to the CVICU. Yippeee! That means we really will be out of here tomorrow. No intensivist sitting over our shoulder telling us everything we are doing wrong. GI doc will get back with us around Monday or Tuesday next week with all the other results. He said what he saw today is only about 50% of the picture so just waiting on the other 50% to see if there is anything there. C is awake and fully aware. Kevin is giving her a bottle as I type this. We will see just how much more she likes eating with having a tube down her throat...ya know on top of all the other reasons she just loves to eat...goody.

Thank you all soooo much for thinking of us and praying for us today. I think all your prayers are what has kept Kevin and I from taking someone out. Patient is a virtue and one we are still learning. I am so very grateful for each and every one of you and all of your kind comments. We really are blessed to have such amazing family and friends.

The GI Series - #1

2010-02-26T13:43:00.001-05:00

C will be going back to the hospital this Wednesday, Feb 24 to have two gi tests done. She has not turned around her eating yet and she is now in a danger area for growth. She is just not gaining as quickly or as much as her docs would like (At 6 months old she is 12lbs, 7ounces...she should be close to or over 16lbs based on her birth weight). So, C is scheduled to have the upper gi scope and have a ph probe placed. The scope should give us some answers about the make-up of her tract and also show if there are any problem areas. The ph probe will be in place for 24 hours and measure how much acid is coming back up and how high up the tract the acid is coming...if any at all. The ph probe will be the definitive answer on whether C does in fact have acid reflux. She was diagnosed as such based on our description of symptoms but has never been tested for it.

We have learned that C will need to go under anesthesia for this. We were really hoping we could get by with just sedation. I really dislike having her go under anesthesia again for what is a 10 minute procedure but her cardio doc says this is the better way to do it.

C will be staying in the hospital at least one night (ph probe needs to be monitored) but we have a strong feeling that she will be there for a little while. Her eating is so horrid right now that we really do not think they are going to let her out. I am sure she will be put back in the cardio icu because of her heart and getting discharged out of the icu is like trying to get Congress to work. Takes forever. The icu docs are always coming up with one reason after another to keep the babies there for "observation" and unfortunately C has a real issue right now with her eating. We are also thinking she will not be leaving the hospital without a feeding tube placed.

However, we are staying positive and hoping for the best. All we really want right now are some concrete answers (yeah right!) and some relief for C. We can definitely now see the toll this is taking on her. She either eats very little (or none at all) and/or eats the bare minimum amount, which would be okay, excepts she throws it all up. All of it. The whole bottle. She gets listless and blueish looking because she is sooo hungry but in pain when she eats. She is treading a very fine line right now and we just want her to feel better so she can be her normal happy self all day.

I will let you all know how she is doing and once we get any kind of answers. Although C will not be having any surgery this time, I am still asking everyone to say a prayer for her. Anesthesia is risky with heart babies. Thank you all so very much for your love, support and prayers.

Escape Artist

2010-02-17T11:16:00.003-05:00

The Good, The Bad and The Ugly - Sunshine and Rainbows Edition

2010-02-11T13:04:00.004-05:00

I was just thinking yesterday, after re-reading my most recent email, that even though I try to be positive, I am always giving you all the bad and the ugly. I know I am a realist and therefore tend to not be all sunshine and rainbows, however, I feel I need to spread a little sunshine and a few rainbows. So here is the good.

Our lives with Carolena are not as horrid or scary as it may seem from our updates. C is very, very blessed to have been born in 2009. 50 years ago, C would probably have passed in her sleep and been considered a SID's death. 30 years ago the doctors were beginning to figure out the 3 step surgery offered for C. Diagnosis of these CHD's was much better and more accurate and the surgeries were having success. 15 years ago the 3 step surgeries were becoming successful enough HLHS babies who normally passed within a few days to a few moths were growing into young adults with relatively normal lives. Today, the success rate and survival rate for HLHS babies is tremendously positive. Everything from the doctors, to surgeons, to medicines, to support machines are a thousand times better. Information, research and trial and error have led to these amazing survival rates for HLHS babies. Who knows, with the way medical knowledge and technology advance C could have a fully grown and functioning heart grown from her own stem cells transplanted back into her when she needs it. The possibilities are endless. I have recently heard there will be national debate on what to do with the babies who are adults surviving with CHD's. Were are going into a new realm here and breaking ground.

C will be 6 months old Feb 19. She is laughing, smiling, talking and playing. She reaches for and pulls down toys from toy bars above her. She rolls all over the place. She still sucks on her hands and has recently found her feet. I just caught her the other day sucking on her toes. She is super fun to dress up. Having two boys I never really appreciated how fun it is to dress a baby. With C it is like having a living baby doll who is just so darn cute in all the little girly stuff.

She is a funny girl and loves to crack herself up. Every time she sees herself in a mirror she gets the biggest smile and tries to touch her face. She knows she is pretty and I think she is figuring out how to use that to her best advantage. Girls sure learn that early.

We do not do that much different than you would with a perfectly healthy new baby. Outside of the myriad doctors appointments, we would be pretty much facing the same adjustments and daily crap we would if C was perfectly healthy. Kevin and I were so darn spoiled with our boys. Even with all this, C is remarkably well adjusted. She only ever cries when there is something wrong. She is not overly upset with shots or pain. She does look to Kevin and I when we are with other people but she does not have a problem with new people. She is actually pretty fascinated with them. She literally smiles all day long (minor exception is 5pm..but I think everyone cries at 5pm...isn't that why that is the mid point of happy hour?).

Anyway, enough of my babbling. I just don't want every update I send to be about C medical condition. Yes, she still sucks at eating and a feeding tube may be in our eminent future but it is what it is. Yes, she cannot be cured at this time, but who knows what they will be able to do in 20 years.

I have attached some pics because, well I can and I just love this little girl so much and want you all to see what I see everyday. (I apologize in advance if these files are HUGE and you cannot get them to open quickly on your computer...I have no idea what the settings are on the pics coming from my blackberry).

Email Update

2010-02-11T13:04:00.001-05:00

Sunday, February 7 started the Congenital Heart Defects Awareness week. This whole thing is kind of confusing because there is not too much under the American Heart Association having to do with CHD's. The AHA gears more toward heart disease, etc. and quite honestly there seems to be no real cohesive group to pull everything together. However, each year more children with CHD's are fighting and surviving, living well into adulthood and beyond. CHD's are no longer the consummate death sentence they used to be. There is hope. A lot of hope. And with this hope does come more awareness. There are several groups now that deal specifically with CHD's. My two favorites are:

http://tchin.org
http://www.mendedhearts.org

Each of these groups provide information but also outlets for support for parents and families.

I thank God everyday that there are doctors, surgeons and researchers who believe that one day they can find a cure for CHD's. That one day they will be able to know just exactly what causes CHD's and will be able to prevent them from happening and if not prevent them know how to cure the heart once the baby is born. There is still so much research that needs to be done.

We face this everyday with Carolena. C is a special case. Her CHD's put her squarely on the most rare end of the spectrum for CHD's. Her heart will never be healed. She cannot be cured. The doctors and surgeons do not have a surgical way to rebuild/repair the part of her heart that is essentially missing. The surgeries she has already undergone and the one still to come only re-route her blood flow allowing for her heart to not work as hard and for oxygenated blood to get to all the parts of her body. As the intensivist doctor in the hospital put it...her heart is in a perpetual state of failure, the staged surgeries will allow for her heart to last longer but it will fail.

Now having depressed everyone enough...I would just like to urge you all to take a minute and check out the sites. Remember heart defects are the #1 defect in babies..approximately 1 out of 150 babies is born with one. There needs to be more funding for research.

On to updates: Carolena is still doing pretty well except for her eating. She still sucks. C has now had the swallow study, the gastric emptying study and one session of feeding therapy. She can physically swallow just fine, apparently her tummy empties just fine (we have our doubts about that one) and feeding therapy cannot really help us. Awesome. I did take her to see the GI doc again this past Friday (2/5) because she has decided that she just does not want to eat again. GI doc changed up her Prevacid and is giving her 5 days to respond. If not then he said would look to do Upper GI series and also PH probe. Still really hoping she turns it around on her own soon. On the bright side she does actually like baby food..her favs include apples, pears, sweet potatoes and carrots. Catch the trend here...she loves the sweet stuff! She has also tried peas, green beans and bananas. The only thing she has absolutely just sit out has been bananas. Weird, right? Well, it looks like the banana stash will be safe for big bro Todd (who by the way could be a monkey with all the bananas he eats).

C is really incredible otherwise (and almost 6 months old). She is a happy little thing. Smiles first thing in the morning. Selfishly I like to be the first one she sees because I love her smiles. She is extremely vocal. Just talks and talks. Pretty funny actually. She is rolling all over the place and is still wanting to sit up. She has to do everything the hard way of course. She could probably get to sitting if she just rolled from her side and up but she refuses to do that and is convinced she can go straight to sitting from a reclining position. Silly girl. She is amazingly strong and loves to be on schedule. She sleeps well and her heart and lung function are great. Her oxygen levels are still really high and she rarely looks blue. We are starting to take her out a little more now but still being very careful to not let anyone touch her or hold her. She LOVES her brothers and gets really upset when they leave her alone. She particularly adores Todd. Probably because he tries really hard to entertain her and make her laugh. Her hair is remaining dark, even though it has lightened up a lot I do not think she will be a blonde like her bros...however, her eyes are still blue. Go figure.

Thank you all again for continuing on this journey with us. My family is so blessed by all the prayers, well wishes and good karma being said for us. Hope everyone is doing well.

Congenital Heart Defects Awareness Week

2010-02-08T10:14:00.003-05:00

This is hard for me to do.

Mostly because I feel as though I do not have enough time to write a post the way I want to. Also, I want to add pictures and all my pictures are all tied up on my home computer. There is never enough time in my little world anymore.

Time is something you lose when you have a child with CHD.

There is a constant battle with time. We spend so much time worrying about doctors appointments, when to be where, who is taking her this time, who will stay with the boys. Is it time for her medicine. Is she suppossed to eat again. How much time will she spend in the hospital this visit. Will she have to go back. How much time do we have with her. Will her heart fail today, tomorrow, next week, next month, next year. Will her eating get better. Will we always have to fight her. Will she get a tube. How long will she have the tube. When can she be a normal baby, toddler, child. Will she ever have a somewhat normal life. Will we?

We live in a constant state of flux, never knowing what will be waiting for us the next day. We are exhausted and frustrated but we push through no matter what because that is what parents do. Keep going, mostly with a smile, so that the children feel safe and secure. That their world remains a constant. Bills are paid on time. Laundry is done. House is clean. There is good, healthy food in the house. Lunches get made. School projects are done. School events are attended. T-ball for Todd. Go-karting for Kyle. C is happy as she can be.

Parents...we do without. Without sleep, without eating, without worry-free nights, without couple time, without intimacy, without showers, without "me" time, without relaxation. It is what it is. Having a baby is difficult, having a baby with CHD is a thousand times more difficult. The constant state of not knowing is horrible.

Live for now. Live in the present. Great advice. You try it all day, everyday, and get back to me and let me know how it worked out for you. We are all human and will have bad days, and sad days, times when we just want to give up and lay in bed all day with the covers over our head because it is easier to just NOT THINK or do anything.

There is no more time.

I thought I was ready to do this. Have this special child, this angel, who would enrich our family. But I was wrong. You are never ready to have a child with CHD.

My Dad

2010-01-11T12:27:00.003-05:00

Would have been 66 today.

Wow. Seems so old yet so young all at the same time.

I have lived more than 12 years now without him being a part of my physical life. That is half as long as the number of years he was here with me.

So much has happened to me in 12 years that he was not here to share in. My pictures of these times are forever missing his presence.

I miss him every single day.

Realized I am Behind on Posting C's Progress

2010-01-05T13:38:00.003-05:00

December 22, 2009 - Getting closer

I actually heard the words discharge and tomorrow (and in the same sentence) twice today. Hooray! We are at least talking about getting out of here. The plan is to do an echo in the morning and if C's effusion has not gotten any bigger then we get to go home. I have no idea what will happen if the effusion is bigger. I imagine we would need to consider moving to the next step of taking C to the cath lab and having a small drain inserted. I am praying really hard tonight that her effusion has not gotten any bigger and really hoping that is is still shrinking. Nothing else really to report. C did have a much worse day today at eating. Up one day, Down the next. The GI doc said today it could take up to 7 days to start seeing effects of the Prevacid now that she is taking it again. So, we just need to see how see does all this week at eating. Here's hoping that tomorrow I will email all that we are HOME!

December 23, 2009 - And a Merry Christmas to You

The major update...Carolena is HOME. Wooo Hooooo! She did have an echo this morning and the effusion is still shrinking. Well, it better be for all the meds this poor child is on, Seriously. Carolena cringes now when she sees me coming with the syringes. I just had to write down a schedule of what she gets, how much she gets and when. Poor baby. Hopefully she can come off some when she goes back for a recheck with the cardiologist Monday. If not drop the med outright then at least not have to take as much as often. Of course this all depends on her effusion continuing to go away. Other than that C is doing well. She is VERY happy to be home and is just smiling and laughing (as long as she does not need to eat). She had her first bath in 2 weeks and she was so nasty the water was turning dingy. She has not been able to have a bath because she needed to heal from surgery and then we got put back in the hospital. Fortunately she seems to be right back into her schedule she was on before all this started. She is amazingly good about her schedule. I think she takes after me...ha ha. Her eating is still iffy but I am really hoping her new gi meds will help her out. She does seems to vomit less now, well at least as long as she does not gag herself. She teething like crazy and thinks she can fit both fists in her mouth at the same time. Not good for a bad gag reflex. Well, we will all be sleeping much better tonight in our own beds (well my bed is C's bed...at least she thinks so...the little queen b). Thank you all for your prayers, good thoughts, positive energy, good vibes...C is getting to spend her very first Christmas at home with her big brothers and family. We are blessed. Hope everyone has a very Merry Christmas.

December 28, 2009 - Very Nice Christmas (written by Kevin)

Hello all, hope everyone had a wonderful Christmas! We sure did, starting with all five of us together for the first time in weeks on Christmas Day. Then good time had by all with Ashley’s family and then my large family. A special thank you Samantha, Shelby, and Ms. Lynn for coming over and wrapping our presents. You don't know how much that saved us after spending two weeks before Christmas in a hospital and thus way too many last minute details to get done. Then it was back to reality today as I (Kevin) took Carolena to her Cardiologist follow up in St. Pete and Ashley went to local hospital to have an Umbilical Hernia removed that she had been putting off for months. Well, Miss C has less fluid around heart so Dr. is cutting Motrin back in half (now two times a day) and Lasix to one time a day. This is good news and hopefully next weeks visit there will not be any fluid left and she can drop the Motrin all together as we feel this is not helping her stomach with already bad case of reflux. Her eating is still horrible but we are hoping this week will see improvement. As for Ashley, she is home in bed asleep. Come to find out, the hernia was huge and the Dr. now feels she has had it since birth. He says the multiple pregnancies had brought it out. So now a month of no lifting over “a gallon” of milk (well Carolena is heavier than that, so we’ll have to bend the rules after the first few days)! Thank you to my parents, especailly my mother, who has had the boys "dumped" on them many times now. So far, it doesn't seem like they've worn their welcome but I'm sure it wont last much longer. Thank you all for your thoughts and prayers, we truly believe they were answered and is why we had Carolena home for Christmas. Attached are some pics from the weekend. Take care and hopefully no more updates needed for awhile!! (sorry no pics with this one...will post some soon).

January 5, 2010 - Hopefully last major update for awhile

Yesterday C had appointments with the cardiologist and the gi. Her cardio report is good. Her heart is functioning just fine, her repairs are awesome and the fluid is all but gone. There is still a tiny bit of fluid but the cardio doc is not at all concerned with it. He said that what is there is not bothering her or her heart in any way. Yay! This also means that she can be off the Motrin. We are super happy about that as she hated taking the motrin. She had to take so.much.of.it and it can upset her tummy pretty bad (go figure). She still must take the Lasix once a day but we are all hoping she will be able to stop that as well after her next cardio appt in 2 weeks. The appointment with the GI was pretty much the same as we have heard before. He actually said to me "you are doing a great job...she has chunk here (her cheeks), here (her little arms) and here (her thighs)." I tell you all right now...and you all are my witnesses...I almost picked up the chair and threw it at him. I was stunned. All we keep hearing is how we are feeding her all wrong. And she coughs, chokes and vomits all the time. And it takes FOREVER to feed her. And we literally have to FORCE her to swallow. And the list continues...I of course restrained myself from doing physical violence to the poor man who is only trying to help. Did learn one new thing. May be WAY too much info for you but C did have microscopic spots of blood in her poop. This could indicated that she does in deed have a cows milk/cows milk protein allergy. Ummm HELLO???? I have been asking that from the very first. Sheesh. So, we switched her formula to Alimentum which can help if she is indeed allergic to the cows milk protein. I have a prescription for a swallow study to see if she is swallowing correctly and if she needs any help with that. If so then we would work with the feeding specialist in the speech department. And we are continuing her meds because of the reflux issues. With all this I am really hoping that her eating will improve. Kevin and I are at the point right now that we just want to throw our hands up and frantically wave the white flag in surrender...we are just that frustrated. We cannot seem to get anyone to really help us because C is not declining and she appears to be pretty good whenever a gi doc sees her. But having to force her to eat while she is wailing and screaming (not good for her heart) and/or choking (um really not good for her lungs...you know that whole aspiration thing) is really wearing us down. We keep telling the gi docs what we go through but nothing yet...we think we are going to let them try to feed her and see what happens then :) Other than the feeding stuff C is great. She is really trying hard to sit up on her own. She has finally discovered her feet and she really wants to put them in her mouth. She still thinks she can fit both fists in her mouth at the same time. She is trying to roll over again. And I just saw her begin to pull her legs up under her when she is laying on her tummy. I think she may be wanting to crawl soon...oh goodness...watch out. She smiles all day (except when I bring out the bottle...) and is really starting to laugh. She is really a very happy baby. Thank you again to everyone who is praying for us and following along on our journey. C is doing remarkably well right now. In the interest of not overloading anyone with emails about the mundane in C's life we will probably back off on the updates. When you do not hear from us that is a good thing. However, please feel free to email, call, text, im, skywrite or however you choose to communicate if you have any questions or just want to check up on us. We always love to hear from family and friends. I hope everyone had a great Christmas and New Year's. May our 2010 be without any surgeries...

Could Be Us

2010-01-01T22:15:00.005-05:00

My heart just hurts today.

Last night I found out that little Gabriel passed away yesterday after developing severe complications after having his Glen open heart surgery 2 weeks ago. Although I do not know Gabe or his parents personally I feel connected to them.

Gabe's mom Lisa contacted me many months ago when she was searching for blogs about HLHS babies. Unbelievably she found mine. We have chatted and shared stories off an on as our busy lives would allow. Lisa's story very closely follows my own. She found out about Gabe's heart in utero and had many months to adjust. Gabe was born August 17, 2009...just two days before Carolena was born. Gabe had to endure an early surgery but recovered well and after a few weeks went home to be with his mom and dad.

Gabe was a strong, happy little boy. Very much like C in that he did not require a lot of monitors or meds at home. He also was bottle feeding and doing pretty good at it. When he went into surgery 2 weeks ago he was smiling, laughing, discovering his hands...very much a normal 4 month old. Now, just 2 weeks post surgery (the same one C had), Gabe is an angel in Heaven.

I do not understand or know why. I only know that I am reminded everyday to love, hug and appreciate all my kiddos as we never know how long we have with them.

Before C was born I never had a thought that I would have to watch my child die before me. I never even understood what so many parents go through. You may think I am being dramatic or over done or wonder why I would care so much about a family I have never even met but here is the thing...when you have a child like we do, we all end up being connected and what happens to them is felt by us because they are the ones who can truly understand what we go through.

I am praying for Lisa and her family.

I am crying because Gabe left too soon and it could be us.

If you would like to read more about Gabe please see http://bustershouse.wordpress.com/

Latest Updates

2009-12-21T22:59:00.001-05:00

Sunday, December 20

C's echo this morning is still showing some fluid on one side of her heart. The fluid is decreasing just not as fast as I hoped. She is continuing to receive Motrin for anti-inflammatory purposes. The cardio doc told us this am that there are two ways fluid collects around the heart. 1) the capillaries are leaking (which of course she has like 5 risk factors for) and/or 2) there is inflammation allowing for fluid to build up. Because of the way C's effusion grew and the way she is responding to the Motrin the cardio doc thinks the fluid is being caused by inflammation. The inflammation kind is actual the better kind to have as it will go away quicker with less chance of coming back. So that is good news but still stinks it is not going away as fast as I like. The other thing holding C up is of course her eating. She really sucks at it. And of course it has gotten worse. This morning we met with the GI doctor here. He reviewed her info, checked her out, heard all the things we had to say and watched her eat. He still thinks reflux is the problem and wants to exhaust all medication options before doing any type of invasive procedure. Well, that's good. I'm all for no more invasive procedures if we can avoid them. The GI here was a little perplexed by the meds she was put on by the GI in Fort Myers. He has changed them around and we are hoping for good results. Since she is still here in the hospital and does have her iv, the GI doc is running her reflux meds through the iv to get maximum, quick benefit. Also, instead of three meds he has her down to two and these should work better for her. Here's hoping. The GI doc did not even mention feeding tube in conjunction with C other than to say they are the one who get called to consult on feeding tubes. I think this is a good sign that they think C will eat better once these meds really start working. So even though we are still in the hospital the news is not horrible. Seems to be the way things work for us. We get stuck in the hospital for things that are serious but not critical and end up being more annoying, frustrating and inconvenient than anything. The thought is that we will be getting out of here Tuesday. Just waiting on the fluid to go away and C to eat. Thanks for all the good thoughts and prayers. We are hoping to be home by Christmas.

Monday, December 21

Groundhog Day. Seriously. I feel like we are repeating the same day over and over and over again. It does not help at all that I do not leave the hospital. Never have the normal changes of the day. Much like a casino minus, you know, all the fun. C is back to her smiley, laughing and talking self. However, she is fast getting tired of this place and is as anxious as me to get out of here. The new reflux meds are having a positive effect. Will see how well they are still working once she has them in her system for a few days. I am really hoping this new mix of drugs will work for her. Today I heard the story of one of the nurses daughters. She is the third person I have heard from saying that the prevacid/reglan mix is what worked for their kiddo. I really pray that C will get some relief. Of course even with the new reflux meds we have added another tummy upset drug in the form of motrin. C is taking the motrin to help with the inflammation to get rid of the effusion around her heart. Go figure. Give on one side, take on the other. The echo this morning did show there is still some fluid by her heart. Much reduced from when we come here Thursday but still not all the way gone. All the doctors I have talked to seem to think that this trend of shrinkage will continue with the meds. C's iv started leaking today. Grrrr. She is such a hard one to get an iv in that all the nurses (iv team, baby iv stick specialists) around here know her by name. Fortunately the iv was able to come out without a new one going in. She is now taking all her meds by mouth. Her iv going bad today has actually helped us out. The docs all wanted to see how she would do with just oral meds. Of course this means she needs to be monitored. Yep. And I did not hear from the cardio doc all day. It finally took Kevin calling our regular cardio doc and paging the one here in the hospital before I saw the guy. So freaking aggravating. If C is not important enough to even be seen/evaluated today by the cardio doctor then why in the hell are we still here? Can't we do this kind of monitoring from home with visits to the cardio docs? Anyway, at least with the iv going bad she could start the meds orally and start the watching period Otherwise who knows when the cardio doc here would have done it. So, there is a slight possibility we could go home tomorrow but more than likely will be Wednesday. Still have a great chance of being home for Christmas. Yea! But also...oh crap. We have all the gifts for the kiddos but nothing is wrapped yet. Arrrgggghhhh. Anyone in Fort Myers want to come to my house and help wrap presents??? Pretty please? Does not feel like Christmas to me. Hoping once I get home I will feel the spirit. I know I say it a lot but I do really mean it...thanks for all the prayers for us.

And We Go Forward Again

2009-12-18T22:07:00.001-05:00

C is still continuing to amaze everyone. Yesterday she presented to her cardiologist with a pretty severe effusion around her heart that had grown significantly in 3 days. Pretty serious stuff.

Today the cardiologist reviewed her echo (after 24 hours of increased meds) and told us the effusion was decreased by half and he has rarely seen one decrease that much that fast.

So, she is doing well and is almost completely back to her normal self. Her eating is still crappy, but her normal crappy. Not the horribly crappy that she was 2 days ago. She is back to talking, smiling and playing. C is obviously feeling much better.

The plan right now is to see if the effusion will continue to decrease with only oral meds. The monitoring is pretty important right now since her very small effusion (fluid) on the right side of her heart very quickly surrounded her whole heart. The fluid around her heart is pretty bad...this puts pressure on her heart and can lead to heart failure if not corrected quickly. I think she will be only or oral meds through tomorrow and the docs will see how she does. IV meds work better and faster and she needs to have this effusion go away or be controlled by oral meds. If she does well then she may be discharged Sunday. Yea!

Tomorrow I will be going back to Tampa with the boys and give Kevin a break.. He has been with her since yesterday when I left to come home. We are really praying that she will be well enough to come home Sunday. Fortunately, all the repairs to her heart are good and functioning just fine. Even better we were told that she should be able to handle some normal infant crying/screaming. We had been pretty paranoid every time she started crying hard that she would damage her heart. Of course we immediately would rush to comfort her completely spoiling her. Now we can treat her a little more like a regular infant...:) She may not be too happy about that since she is very used to being held and cuddled every time she makes a peep.

Thanks again for all the prayers. I am continually amazed how quickly C bounces back and I know all the prayers are working.

Not So Fast

2009-12-17T22:19:00.001-05:00

Carolena was readmitted to St. Joe's hospital this afternoon. She is doing okay and hopefully she will be able to come home again soon. C has been very crabby and fussy...not wanting to eat and just screaming without being able to be consoled. So not like her at all. She generally will only fuss while she is eating but since yesterday morning she has not been herself. Kevin called around to our different doctors and we finally decided this morning that we were taking her to St. Pete. Fortunately one of the cardio docs who is familiar with her was able to see her in clinic today even though he technically was not seeing patients today. After her echo was done he let us know that the small pocket of fluid behind her heart that she left the hospital with on Monday had increased. Not good. So, since she was not eating at all and he wanted her lasix and diuretics upped he admitted her to the hospital so they could monitor her fluid intake (through iv) and watch the fluid around her heart. This effusion in not uncommon in post op heart surgeries however, everyone was really thinking this small bit of fluid would not be an issue.

The good news is that the repairs that were done to her pulmonary veins and her Glenn procedure are fine. There is no obstruction visible on the echo and her cardiologist thinks all her grumpiness and no desire to eat will go away once the fluid around her heart is gone.

We are praying VERY hard that the meds will do the job. If the meds do not work then she will have to have a drainage tube placed until the body stops producing the fluid. This step can be done with minimal invasion in the heart cath lab but we really do not want to do this if possible. Unfortunately if neither of the two steps work then she will have to have surgery again in which they open her up. We really, really do not want that.

So for now C is being observed closely. She is doing okay and Kevin is staying with her. My mom is with them right now as well. I came back to Fort Myers to be with the boys. I cried leaving Tampa. By the time I got to the Skyway I was just numb. I hated leaving her. I know she is just fine with Kevin and she probably does not miss me as much as I miss her.

Best case, C will be home this weekend. This is what I am praying for now.

Thank you all again for thinking of us and following C's progress. I know this will be a very long journey with a lot of ups and downs. I hope this down turns out to be minor.

More Updates

2009-12-15T22:25:00.002-05:00

Again from the email updates I have been sending out...

#9 - No News is Good News (December 12 - 5pm)

No news is good news...unless of course you publish newspapers. Well then I could see where that might be bad. C is continuing to improve. She is much more alert today and has been awake most of the afternoon. We are slowly getting her back to her schedule we had before her surgery. We do have her back on her normal eating schedule but she is still really skimpy on the eating. I am thinking the one thing that is going to keep us from coming home is her eating. How something so fundamental and necessary can be so hard I do not understand. Hoping maybe we can get someone over here to see C that can explain it to us and to help her out. The funny thing here is that C is not fussy and crying because she is hungry. She hardly ever cries or even acts hungry, She pretty much could care less whether she eats or not. Really very strange. Even more weird is the only time she ever really cries is because she is eating. She is only on tylenol and has been since yesterday morning. She is not in any real pain from the surgery but her head is still really achy from the Glenn procedure. With the Glenn, the svc from her head has been detached from her heart and reattached to her pulmonary artery. The blood from her head is now being drained via gravity. Therefore the pressure in her lungs must be lower than the pressure in her head. When she screams/cries the pressure builds up in her lungs and then the blood from her head backs up and she turns purple from the chest up. So, since her surgery was only 3 days ago her body needs to regulate and get used to the new pressures in her lungs and head. Therefore her head hurts because the pressure just went from like 100 to 10,000 (just made up numbers for effect). She had another echo this morning and the cardio doc said all is good. Her function is good, the repairs are steady and there is no fluid around her heart. The pressures in her head and lungs are good as well. Her blood pressure is still slightly high. However, we are still moving slowly toward the finish line (for now) and forward to getting discharged. She had her arterial line removed this morning and is receiving more of her meds orally instead of through iv. All she has left now are the pacing wires, the central line and two ivs. She is still on lasix which is a diuretic, primacor (a heart med), a med for high blood pressure (since it has not come down since her freak out yesterday) and now aspirin. This is in addition to her three meds for reflux and antibiotics for the no spleen thing. Hopefully she can come off some of these meds eventually. Our nurse today is really very cool. Kevin has gotten to hold C twice today and I have gotten to hold her once. She really does like to be held. Such a spoiled little thing. :) So. That has been the day. Keep sending good eating thoughts...hoping C will pick up the positive energy.

#10 - Oh Boy...Carolena is This Close (December 13 - 5:15pm)

to coming home! There is talk around her that we may be sprung tomorrow. Yes, you all read that correctly...tomorrow...as in 5 days post surgery. Whoa. Well, C only has one thing left in her. The central line. She managed to blow both her ivs in her feet this morning requiring them to be removed. Her pacing wires were just removed. Yea! But we have just learned that she needs to have an iv in order to have her central line removed. Dang it. C is not easy to get an iv into. So far she has had to be sedated each time to get just one iv in and even sedated it still takes like 12 times before one is placed. Horrible. Don't know what the consensus is yet but probably getting the central line out tomorrow after they put her through hell to get another iv that they will just remove 5 mins later. Grrrrr. The only thing she is still receiving by iv is the heparin (keeps the lines open) and lasix (the diuretic). Pretty cool that most of that stuff is gone now. Of course we have replaced the iv meds with oral meds. Way too many to list here but hoping some of them can be discontinued eventually. And to all the wonderful people who have suggested we get help with C's eating we have requested that speech therapy come by tomorrow to evaluate her. Have no idea what that means or what will happen but we are going to give it a go. Hope we can do that prior to getting discharged but if not we can do as outpatient. We will get a handle on her eating yet. But best of all....C is back to her old self. She has been awake all day and eating on schedule. Kevin had her dressed this am until she got some blood and pee on her outfit then he put her in her own nightgown. She has been laughing, smiling and talking today. She is not even screaming when the nurse comes through her door. Yea! Thank you for all of the prayers...C is a special little girl and we are all so blessed to have so many people thinking of us and praying.

#11 - Just in Case You Have Not Heard (December 15 - 10pm)

Carolena is officially home from the hospital. She was discharged yesterday around 2pm. Had to get all our stuff out of the hospital and the Ronald McDonald House and finally left Tampa around 4pm. We got to Fort Myers around 6:30pm with the happiest of thoughts until we tried and get her heart meds filled. What you say? Go to a 24 hour pharmacy? Yes, that is a great idea except one of her heart meds has to be compounded. Huh? Well, we are not as confused as some of you as we have already had to deal with this as C's Prevacid has to be made at a compound pharmacy. However, finding a compound pharmacy open at 6:30pm is near impossible in Fort Myers. Kevin finally called the hospital and found a Walgreensin Cape Coral (which virtually no chain pharmacy does compounding) that is actually a compound pharmacy. Whew! Pharmacist was super cool and actually filled her heart meds for us. Kevin spent 2 hours going back and forth until he finally brought them home. So, while I had the best of intentions of getting this update out last night we have been insanely busy since getting here. Now for the good news: 1. C was discharged 5 days post op...ridiculously fast for open heart surgery patient, especially having had 2 different procedures done2. Intensivist doctor, and I quote, said "she has far exceeded my expectations for being discharged this early. Amazing. We hardly ever get a patient out this fast"3. Cardiologist, and here again I quote, "she is a super star."4. Speech therapy came by and we learned that well, she has no oral aversion, sucks her paci just fine, can suck/swallow/breathe just peachy keen fine5. Her heart function is great, the repairs are great6. She is actually hungry. I know sounds backwards since unrepaired her heart was working so much harder but she seemed to never have an appetite and now she does7. Her surgeon is a rock star and is known for making teeny tiny incisions which C is now sporting proudly. Once healed you may not even notice it right away. The bad news: 1. She has HORRIBLE reflux...and this surgery with being intubated again has made it so much worse. We are starting all over again with getting her esophagus healed. Totally sucky She is in ridiculous pain and can hardly swallow without screaming in pain. We need to get it under control so she can eat and gain weight.2. She still has a headachy head from the pressure changes which is making her irritable3. She is a lot more blue in color all the time, again I know sounds backwards but with the Glenn procedure she will only run around mid 80's for oxygen saturation versus the 90's she was in before. After her Fontan procedure when she is around 2 years old she will again run in the 90's (we run 100%). All in all, we are so blessed that C has made it this far with as few complications as possible. Our doctors and the surgeon are amazingly talented but I know God has heard all our prayers for C and is answering them. She continues to far exceed expectations and is such a special little (and I mean that literally) girl. Here are some fun facts about C: 1. She actually likes her hair bows. She lets me put them in and does not mess with them, never even touches them.2. Even though I am not a huge fan of the color pink I am now as pink makes her look less blue.3. C loves to talk. She is super vocal and will tell you all about it.4. She must have 100 different smiles already and we love them all.5. She loves to hold her daddy's hand and will instantly calm when she can hold on to him.6. Her eyes are really blue, just like her brothers.7. Her hair is still dark brown, not blond.8. She has super chubby cheeks that make her look a lot bigger than she is.9. She loves her brothers and actually likes to sit with them and she will calmly watch them. I cannot express enough how grateful we are for all the love, support, prayers, shoulders to cry on, thoughtful bosses, friends and family. We would never have made it this far without the wonderful support system we have. Kevin and I were able to be with C the whole time she was in the hospital and we are firm believers that C is home because we (and Pappi and Aunt Janey) did not leave her side . We stayed with her to love on her, feed her, help control her pain, advocate on her behalf...and now she is home with us in plenty of time for Christmas. C has an appointment next week with her cardiologist. She does still have a very small pocket of fluid behind her heart they are watching. We are praying that next week this fluid is gone for good (if not, then we at least hope it has not gotten bigger...that would be bad). But, I think we will be okay. Thanks again so much. Much love to all...

Updates on Carolena

2009-12-11T23:45:00.005-05:00

With everything going on and all the places I am having to put update posts, my poor lonely blog seems to always get the shaft. So, in the interest of fairness I am putting the updates I sent out as emails here in a blog post. Hope blogger will let me put that much in one post...

#1 - Carolena is in OR (December 9 - 8:20am)

Of course we were late to the hospital (got in at 6:15am). Go figure. But all is good since we did preop yesterday. Nothing to make C cry this morning. All the lines and ivs will be done after she is sedated. Thank goodness. We met with anesthesiologist and doctor before they took her back. The surgeon informed us that he may in fact go ahead and do her Glenn surgery today as well. He is going to repair the pulmonary veins first and then see what her pressures look like. He will decide from there whether to proceed with Glenn or not. Other than being surprised with this info this morning, Kevin and I are on board with doing her Glenn today as well. Keeps her from doing two surgeries before her 1st birthday and of course the fewer times they have to open her up the better. The surgeon did tell us that he thinks doing the Glenn today would not be an agressive approach and feels very comfortable proceeding if he is okay with her pressures. He thinks she will tolerate both procedures very well and should have no increased risk for bad complications. C went back to OR at 7:30am and the nurse told us it would be at least an hour before they even started surgery. C has to be sedated, lines placed, intubated, the echo done, switched to bypass and then surgery started. Nurse said she will do best to update us approx every hour.

#2 - Update from OR (December 9 - 11am)

Just got an update from the OR. Nurse says C is doing really well and that the surgeon is moving ahead and doing her Glenn procedure today. Great news in that she will only have one open heart surgery now (not the two we were being told).

#3 - Out of Surgery (December 9 - 1pm)

C is out of surgery and in recovery. She is doing well. We met with the surgeron about 20mins ago and he thinks she will do fine with recovery. She will have a swollen head for awhile. She may develop plural effusions, fluid in and around the lungs, which require drainage through caths until her body stops producing the fluid. She needs to eat as well or they will insert a feeding tube. Clots and strokes are still a risk as well. Please, please keep the prayers coming as they are working. C is a ROCK STAR!

#4 - Picture Soon After Surgery (December 9 - 5pm)

Still doing well. Little fluid around heart they are watching but overall, so far so good. Thank you all for prayers and keep them coming, still rough road ahead, especially next 24hrs.

#5 - Almost 24 Hours Post Surgery (December 10 -12:30pm)

And C is still rocking along! She does have pain but it is much better controlled now with a constant drip instead of the more traditional method of loading her up then wearing off. She is trying to be awake but can't quite get her little eyes all the way open. We did she her sweet little eyes a few times last night. I have a feeling when she really comes to she is going to be giving me the total stink eye. But, I will take what I can get. The doctors are starting to slowly remove some of her lines. She no longer had the oxygen reading thing on her head and back. The nurse is getting ready to take out the line in her neck. Each time a line comes out and nothing new goes in, we are one step closer to home. She does still have her chest tube, folio catheter, 2 regular ivs, 1 arterial line,1 central line and a nasal canuala (for small bit of oxygen). So, as you can see we still a have a very long way ahead of us. Hoping the oxygen can go soon and the nasal cannula can be removed. She really hates that thing blowing in her nose. Doctors are still very closely monitoring C. Her atria is still not quite firing correctly but they think only because she was disrupted yesterday. So, to help her out until her heart is 100% she is getting a little help from an external pacer. As the doctor said this morning, she can do fine without the pacer but it is helping so lets leave it for now and help her out. There is still a little fluid around her heart but the chest tube is still draining so it is not too concerning. Still watching her urine output and want to see more but where she is right now is too be expected. Also very closely watching her temperature. We do not want to have an infection set in and delay her recovery. Her breathing is still a little heavier than we have seen it but again, nothing out of the normal and too be expected at this point. Surprisingly her head is not as big and swollen and we were told to expect. I understand she could still swell a little more through the next 24 hours but after that she will have hit max swelling and start to recede. The swelling and the change in pressure in her head does cause her some pain and headaches but she is getting tylenol round the clock to help with that. Overall the doctors are happy with where she is. The intensivist said this morning that "her body is self-regulating. Pretty neat that she is doing on her own exactly what we want and what we would do manually with machines if she was not." Amazing. We may get to try and feed her later today, if not today, then tomorrow. I know she will be sooo happy to eat again. Talk to using a ng feeding tube at first but we are not exactly on board with that plan but we will see. I am very grateful to all our family and friends who are saying prayers for us. Even if I do not respond directly back to you, please know that I read EVERY comment sent back to us. If you have offered help, we will absolutely take you up on it when we need it. If you have said special prayers for us, we do see it. I am awed by the ones from the little ones who are praying for us. For such little kiddos they really seem to know exactly what to say. Like Carly's precious daughter Georgia who with no prompting prayed for God to "bless her heart." Thank you all soooo much. We are not out of the woods yet but keep taking baby steps forward.

#6 - 48 Hours Post Surgery, A Few Hours Ago (December 11 - 5pm)

C decided to keep things interesting this morning. Around 7am the nurses came in and started to remove things. C had her chest tube removed and her foley cath removed. In addition, her fentynol (pain meds) were stopped. Now, C does not like to be messed with. She gets upset when people are messing with her when she does not want to be messed with. Especially in the morning when she would rather sleep. She IS NOT a morning person :) So, she freaked out. Poor Kevin was here by himself when this happened. I was still at the RMH. C had terrible mottling. Mottling looks like a spider web over your skin, you can see all the veins clearly. And she started turning a horrible shade of purple. Her one arm was really, really bad. The doctors and nurses rushed in and started attending to her. The thought was she may have a blockage (or worse a clot) in her arm from where the anesthesiologist tried to put an arterial line. Or even much worse, that the heart repairs were not working and her heart was failing. So very scary for all of us especially Kevin because he was in here watching it. Doctors did an echo immediately. Her heart is fine. Repairs are good and her function is good. Did an ultrasound on her arm to check for the clot or blockage. Even without the official report from radiology the doc did tell us that there is flow to her arm so it is good. Did a chest x-ray to make sure her lungs are good. She was coughing and throwing up mucous this morning. But her x-ray came back fine. No pneumonia or fluid in/or around her lungs (plural effusions). Her blood pressure is still a little elevated but I have not seen any of the doctors in her room since I have been here. When you do not see the doctors you know you are doing pretty good. And, very good news is that she is still not running any kind of fever. Infections are a big complication so we are very happy to see that there is no fever. So. The short of it is that C is still doing pretty good. She has had her chest tube removed, her foley cath removed, her nasal cannula removed. She still has two iv's (one in each foot), her central line and her pacing wires. Even though she still has her pacing wires she has been off of the pacer since yesterday. Her heart is not 100% in perfect sinus rhythm but is very very close. Very good news. (The central line is kind of like an iv but the line goes through her chest directly into her heart. The pacing wires also go through her chest directly into her heart). She is now just on a diaper and is urinating fine. She has also had a poopie diaper which is a good indicator for letting her eat....which is the BIG news of the minute. I was finally able to feed C at 4pm today. She took 3 ounces of formula in 15 mins. I know that does not seem like a big accomplishment but, for a heart baby who just underwent open heart repairs that is AWESOME. We are still closely watching and monitoring C. She can still have complications arise but we are slowly getting to the other side. All of our prayers are working so keep them coming! Thank you, thank you. thank you...

#7 - So Much for Carolena Eating (December 11 - 11pm)

I was really hoping she would be eating much better. Oh how wrong I was. When the doctor finally gave the go ahead for her to eat and I gave her a bottle she took the whole thing down like a champ. I was really encouraged. Now two more bottles later and she is sucking...and not the formula. All we have heard from the doctors is that she will be such a different eater once she has her heart repaired, Even with just doing the Glenn (which is not the full repair) was really supposed to help. When we thought we were just having the vein repair surgery I was not too hopeful better eating. But having the Glenn is supposed to make a real difference. So far that has not been the case. Crap. I guess what is most frustrating is that we were actually making small improvements in her eating right before she came in for her surgery. Not all the feedings were great but we were definitely making progress. Now I feel as though not only are we not moving forward with better eating but we are actually moving backwards. Grrrrr. Have I mentioned how much I dislike trying to feed my ridiculously picky child in the hospital. She just won't eat and I cannot reason with her that if she does not eat then she will get a feeding tube. Which I know she will hate. With a passion. Really don't understand why I cannot just reason with her...;) The doctor did say that she would not eat any worse than she has been. Well, really? Because right now she is not doing it and that has just not been the way she has been eating lately. To me. that means her eating is worse than before. Maybe tomorrow will be better. Maybe she just needs time to adjust. Maybe if C understands just how many people are wanting her to eat then she will just magically start doing it. So. Please send lots of happy eating thought our way. C really needs to start putting the bottles down.

Carolena's 1st Open Heart Surgery

2009-12-08T21:01:00.001-05:00

Well, we are in Tampa at the Ronald McDonald House getting ready to get some sleep. Had kind of a long day as we had to get C up here for Pre-Op and sedated echo. The sedation was just a liquid she drank and made her drowsy so she would sleep. She did awesome for everything except the blood draw. She just does not want to give up any of her blood! She got poked about 5 times...even once in the groin artery and they barely got anything. Fortunately it was enough. If that did not work they were going to prick her heel and squeeze it out til they got enough. So painful for her...very glad we did not have to do that.

Of course she just charmed all the nurses. She was smiling and laughing and talking up a storm. She was telling anyone who would listen just what to do and how to do it. Such a silly girl.

Tomorrow we check into St. Joe's for her first open heart surgery. She will have her pulmonary veins worked on and repaired. We were really hoping that this vein repair surgery could be done at the same time as her Glenn but all the doctors feel having two separate surgeries is far less risky. So, we do this one now. Let her recover. Then do her Glenn in about 3 months.

Our day will be VERY LONG. We have to be at the hospital at 6am and she will be taken back around 7am. She will be sedated for the placement of all her lines including her ivs. Yea! At least she will not have to feel all the poking while they try and find access. She will have a transesophogial echo. Basically they stick a camera down her throat to get another look at her heart. Then she will be intubated (put on a ventillator) and be switched over to the heart/lung bypass. The bypass is because the surgeon will stop her heart so he can operate on it. Once the surgery is done another echo will be done and she will be (hopefully!) sent to recovery after being weaned off bypass. We have been told to not expect to see her until around 2pm and that she will still be intubated. Probably intubated for at least 24 hours after surgery. I hate that for her but she will be pretty much knocked out so her body can rest, recover and not be in any pain.

The average stay in the hospital post surgery is 10 days. She could be a total ROCK STAR (which we really hope) and have a much shorter stay,like 5 days. Or she could need some more time and we could be here awhile.

I know you have all had lots of requests for prayers but if you could say one (or 1000) for C tomorrow we would really appreciate it. We need her to keep being strong and a fighter. We also really need there to be no complications from surgery.

Thanks - Giving

2009-11-30T10:23:00.002-05:00

This year we reinvented Thanksgiving.

Every year since I was about 5 years old my whole family has traveled to Alabama to spend the holidays with my mom's family. Everyone congregates at my grandparents home and each year our event has gotten bigger. New grandchildren have arrived, new in-laws have arrived and now new great grandchildren have arrived. We are pushing close to 40 people when we all get together. Lots of people to get into my grandparents house! Of course only a few of us stay at the house. Everyone else joins in for lunch and dinner.

Of course this year was different for me.

When we first learned of Carolena's diagnoses one of my first questions was, "can we travel?" The answer was a resounding NO from all the doctors. Ugh. Oh well. We have to do what is best for little C.

When we discovered that C was actually doing so much better on her own then anyone really anticipated, I was getting a little hopeful that we might be able to make the trip.

The answer from all the doctors..."um, are you crazy?...NO."

Well, I had to ask.

So, this year we reinvented Thanksgiving and stayed home.

My mom even stayed with us this year. No small sacrifice for her as she does not like to miss out seeing her parents (and sisters and brothers and nieces and nephews, etc.) Mom and I did something even more unprecedented. She called a local caterer and we had our Thanksgiving dinner made for us. Mama picked up all the food (including a whole turkey) at 2pm on Wednesday. Wow. Nothing like not having to cook. Which, by the way we did not completely escape. Mama still did make 2 pumpkin pies and I did make another whole turkey. Kevin got the turkey from work. Which in actuality turned out well since we brought the turkey with us to his parents house the next day. With all the sadness (me) in the changes we did have lots of new experiences to celebrate. Our good friend Megan and her daughter joined us for Thanksgiving dinner. We got to spend time with Kevin's family this year. And the boys had a blast staying at Kevin's parents house with all the cousins. So, even though our usual changed, the changes were pretty good.

Sunday we all went to get Christmas trees. Yes, I said trees. Plural. The boys got to pick their own small tree for their room this year. Kevin is such a sucker. However, the boys are just so excited to have their own kids tree and honestly me too. I do not have enough room on our one tree to put all our Christmas ornaments...such a lovely problem to have. Kyle lobbied hard to have the tree put in their bedroom. Todd, well, he was not keen on the idea. I guess just like the toothfairy, Todd has a problem with people coming into his room at night when he is sleeping. Quirky to say the least. But he has been telling us lately he is afraid of the dark and monsters in his room...so in all reality I guess not too weird to be freaked out about the thought of some big adult you do not know and cannot see messing around in your bedroom when you are sleeping.

Oh...and hallleluah....Egg Nog milkshakes from Stake-n-Shake. Is there anything more yummy? I had one Saturday and it made me so happy I just had to get one Sunday after we got our trees. If you have not had one yet, you seriously need to get one. Unless of course you just hate eggnog.

And on to Carolena. She is still doing well. Her heart cath did show that she will need to have surgery to correct her pulmonary veins prior to doing her Glen. We were really, really, really hoping the doctors could correct the veins at the same time as doing the Glen so she would only have to do one open heart surgery. However, with the pressures in her heart, lungs and veins right now, doing the two procedures is way too risky. She will have the pulmonary vein surgery on December 9 and if all goes well she will be looking at having her Glen about 3 months later.

Just so you all know, Kevin and I try really hard to put on a brave face. We talk about C and her issues and surgeries very matter of fact. In reality we are terrified. I get so caught up in doing everyday things with being at home, especially when we do not have to see any doctors for a couple weeks that when it all hits me again I am leveled just the same as when I originally found out. I AM grateful that she is where she is and that we are home. But, this does not take away from the fact that C is a sick baby and she needs surgery. She needs the same surgeries as kids just like her who are not doing as well. Kids like her who are still in the hospital. And guess what, she has the same death/survival percents as all those other kids too. In some ways, our life right now is harder. I find myself forgetting to worry (which is actually good) but I also get caught in thinking that our life is normal. Which of course it is not. We struggle and fight and push through and what is on the other side...nothing...there are no guarantees, there is no happy ending, there is no miracle. Only more of the same. THERE IS NO CURE. So, now we gear up for C's first open heart surgery on December 9. It very well could be the last time we get to hold her, kiss her, hear her talk to us, see her smile at us. There are soooo many risks each time she goes on bypass. The surgeon will stop her heart. I am terrified.

Snippets from Today

2009-11-20T20:58:00.002-05:00

On the way home from school:

Kyle: Mama, white cells fight and red cells help your body.

*******

After dinner while eating dessert:

Me: Kyle, how is that Eggnog ice cream with chocolate syrup?

Kyle: (mouth full of ice cream) Shakes his head and gives me a thumbs up.

*******

Also after dinner while eating dessert:

Kyle: (with eggnog ice cream and chocolate syrup) Look Todd, mine is a Sundae.

Todd: Kyle, mine is a Monday.

C is 3 Months Old

2009-11-18T10:03:00.005-05:00

Carolena is officially 3 months old November 19 (13 weeks and 1 day). We are still in the time conundrum where her actual age in weeks is still greater than her age by date. However, I am happy to be going by her age by date at this point because it feels like we get to cheat a little bit. Every measurement is taken by her date age, so things like her weight are showing to be a little higher (yea!!) This also means her first open heart surgery will not take place until her date age of December 19 when she is technically 4 months old.

While I am in no hurry for her to undergo such extensive surgery, I am hoping that we can get this surgery done sooner rather than later. Waiting really sucks. Especially when there is no choice. We HAVE to do surgery. Right now Carolena is stable. Her oxygen saturation levels are still high, she is still breathing on her own very well with a normal respiration rate, her heart function is stable and normal for her. She is gaining weight. Slowly. Very, very, slowly...but the gain is still there. As long as she gains an appropriate amount then the doctors are not overly concerned with her development. Eating is critical. Not only as an indicator for her heart function but also for her growing organs and her brain. She NEEDS all this food (and calories) whether she thinks so or not. Honestly, this child is far too young to be worrying about maintaining her figure by staying skinny. Don't let her sweet little chipmunk cheeks fool you...she does not have the typical baby fat rolls anywhere else on her frame.

At this point Carolena is still fighting eating. I am still skeptical that this is a JUST a reflux issue. But, I do really, really want to believe it is JUST reflux because the alternatives are just too scary to think about. We now have her on Prevacid. She seems to be doing a little better. Each time we think we are turning the corner she starts fighting eating again. Sometimes I really think she is doing this to be difficult...you know already testing the boundaries on how much she can get away with before getting into trouble. We are really crossing our fingers that the Prevacid will work. We have had two different families who went through these same reflux issues with their babies tell us that the Prevacid is what finally worked for their little ones. Please PRAY for us that this is the case for Carolena as well. We walk a very fine line with her. The doctors WILL NOT hesitate to hospitalize her and surgically place a feeding tube if she does not eat. We are not allowed the option of seeing how this works out. Her heart does not function efficiently for her body, she burns more calories than a normal baby...therefore, if she does not eat, or eat enough, the doctors will get the calories in her somehow. As I said before, it is critical.

Having said all that she is weighing in at 10 pounds. So, not horrible. But the effort it takes to get her to eat is incredible.

Now on to the fun stuff...what C is doing at 3 months old:

- She LOVES her hands. She plays with them and CHEWS on them all the time.
- She is definitely teething (see above).
- She is getting interested in toys.
- She smiles first thing in the morning when she wakes up and sees me.
- Her smiles are so big and transform her whole face.
- She is "talking" up a storm, she can have a whole conversation of coos, oohhs, aahhs and gurrs.
- She can grasp and hold her rattle when we put it in her palm.
- She is really trying to sit up on her own.
- She "stands" when you hold her up on your lap.
- She chews on her bottles and pacifiers.
- She is starting to laugh.
- She loves her big brothers and loves when they hold her or play with her.
- Todd makes her laugh.
- She sleeps very little during the day, preferring several short cap naps.
- She sleeps very well at night (with the exception of us shoving a bottle in her mouth).
- She still loves to sleep in our bed.
- She still loves her bath.
- She likes to be outside and will calm down if fussy (just like her brothers!)
- She is very similar to Kyle in sleep habits and eating.
- She is very similar to Todd in temperament.
- She does not cry for no reason.
- She cries when there is a problem...dirty diaper, making her eat, pain from reflux.
- She is pretty easy to console.
- She does consistently take a pacifier...hoooooray!
- She likes her bouncy seat and swing equally well.
- She holds her head up and steady all by herself.
- She is SUPER strong and VERY alert.
- She loves to watch all the stuff going on around her.
- She does not like to be left alone in a room or left out of family time.
- She still stares at the ceiling with the biggest smile and now she "talks" and "laughs" too...we think she is having some fun with her angels.
- She is ticklish but gives you a very bored, DIVA look if you try and tickle her.
- Other than when getting her bath, she HATES to be naked.
- She has still only been in the hospital twice and both times she came home just fine.

We know how special C is and we are so VERY grateful she looks SO good and is doing so well. We have been at home all this time. We have been able to have a relatively normal life. We are being given all that we can truly ask for.

Ruminating

2009-11-05T10:22:00.002-05:00

I have this blog for me. I write what I want because I can. I try very hard to not pass judgment on others because I am not God and God is the only one who can impose judgment. I do not appreciate sanctimonious, holier than thou, self righteous people passing judgment on what I believe.

Last I checked I live in a country that not only allows but celebrates religious freedom. So many citizens have lost their lives protecting our freedoms, including our freedom to have whatever relationship with God we choose to have. Should you feel compelled to leave a comment on any post I write dealing with MY beliefs, please do so in a manner that tells me what YOU believe and why. Do not leave me comments about how I am wrong and I should change my mind.

Now that I have that out of the way, I have a few more things that I have been thinking of.

1. If God already knows and sanctions how everything is going to turn out, what exactly is the point of praying. Is God going to change His mind simply because I pray for a more favorable outcome for me? Does a whole group of people praying have more weight than a single person praying? I choose to believe that God does not have everything all mapped out yet...that praying does make a difference.

2. I believe that Jesus would be the very first person to say that He is not perfect. He would say He could have worshiped more, studied more, helped more. I do not think Jesus ever intended for us to think he was "perfect." I think all the trials He went through were to show us that even though we are not "perfect" we still must have faith that God exists and that we have a chance of ever lasting life in heaven.

3. Even though my belief that God makes mistakes runs counter to every popular religious belief, I choose to hold on to my thought that God is fallible. I have problems thinking that God is punishing me for some misdeed I have done. From all that I have seen if God was the punishing sort then all the "bad" people would have long since been struck down.

4. I also choose to believe that things do happen for a reason, that there is not total randomness at work. I think God sees all and is willing but not able to keep all evils things from happening.

5. I am no different (better or worse) than any other mother who has a child with health issues. I do not have the market on being angry this happened to me. I am allowed to feel as I do. There will be people who are in worse situations than me, saying what is she complaining about, look at my problems. But there will also be people who look at me and my child and think, thank goodness that is not me. I think everyone has the right to feel what they feel and not have other people tell them to suck it up it could be worse.

6. I think it is very easy for someone who has never had their innocence shattered or their lives rocked by traumatic events to pass judgment on those lives have been touched by tragedy and who do question God and their beliefs. In my experience the people who are spouting sanctimonious crap are people who have lived nice, normal, boring lives where nothing bad (but nothing really good) has happened. I think it is very similar to the person who believes that a murderer can be saved and should not face the death penalty until that person's loved one is terrorized by the murderer. It is amazing to me how quickly that person is willing to see that same murderer they thought should be saved now be put to death.

7. I think God wants us to question our faith and beliefs. We can never grow in our faith if we are blindly lead around like sheep never questioning why things happen. God gives us free will. I think he intends for us to use our free will to find the right relationship with God for each of us.

God Makes Mistakes

2009-11-04T10:01:00.002-05:00

I generally refrain from posting anything on here about my relationship with God or my struggles with faith. However, I have had a light bulb moment recently and I really wanted to write about the truth I am just coming to realize.

God makes mistakes.

Now, stay with me here. I know this is not what we (especially me in the religion I was raised in) are taught to believe. But, this idea is one I have been playing around with for a while.

For a little background, I have always had issues with death. I guess mostly the finality of it all. Death is permanent and so devastating to the ones left behind. Losing Todd and then my dad so close together just seemed unfathomable to me. I could not even find my way up much less understand why God allowed them to die. I also have issues with what I perceive as what is fair and just. I always want things to be fair and justice served. I have suffered so much already and I play by all the rules. I am a good person, I do what I think God would want me to do so why do I have the child with severe heart defects? Should not the couple who flaunts all the rules and what is right pay the price? Why would the couple who does not even want a child, who is selfish in their very being be rewarded with a perfectly health child? But in reality all that thought process has done for me is make me miserable, self righteous and judgmental.

Yet, still I question if it is fair for a 3 year old to be beaten to death by the child's mother's boyfriend? What did the poor innocent child ever do to deserve a short life filled with so much pain, misery and shattered innocence? Why did not God strike down the man beating the child before the child paid the ultimate price? Why are children the world over being abused and debased? And of course this extends out to countries in civil war and genocide. Innocent, vulnerable people filled with pain and terror and then death. Where is God then? Why do babies and children get cancer and suffer horribly? Why are babies born with birth defects and genetic diseases? Why do I have a baby who looks perfect on the outside but has a horribly defective heart that causes other issues? A baby who may not live past 1 year of age. A baby who CANNOT be healed. A baby who if she reaches adulthood will face a whole host of other health issues on top of the idea that death is imminent and questions of WHY ME?

Because God makes mistakes.

And the idea is born.

I have recently begun reading "When Bad Things Happen to Good People" by Harold Kushner. I am particularly intrigued about Kushners' thoughts and interpretation of the book of Job. Job, a righteous man. A true believer in God who even when God takes everything away from him still believes and worships God. Why would God strike down a man who is absolute in his faith and worship of God? Many thoughts prevail but as Kushner notes there are three basic principles that apply. "1. God is all-powerful and causes everything that happens in the world. Nothing happens without His willing it. 2. God is just and fair, and stands for people getting what they deserve, so that the good prosper and the wicked are punished. 3. Job is a good person." Yet, as Kushner points out, we cannot possible think all three principles at the same time when Job is being struck down and suffering. Job cannot possibly be a good person if God is making him suffer because God would only make the evil and wicked suffer. Therefore you must believe that either Job is a bad person, God is not fair and just or that God is not all-powerful.

The more I was thinking of Job and the three principles the more I was coming to the realization that God makes mistakes. I still absolutely believe that God IS all-powerful. However, I do not think that Job was a bad person and I am coming to believe that God may be just and fair but it does not apply they way I (we) would like to see.

God makes mistakes.

The more I tossed this idea around the more it began to make sense to me. See, as I understand the teachings of the Bible, God made us in his own image. If God did indeed make us in his own image and we are not perfect and we can fail and we can make mistakes does it not stand to reason then that God is also not perfect, that God can fail and that God can make mistakes? He is in charge of the entire world...can he possibly keep his eyes on everything at all times?

This then leads me to my next thought.

God is merciful.

I think God is merciful because He knows He makes mistakes. If He is perfect and everything that happens is sanctioned by Him, then why would he need mercy? He would tell us that He does know and sanctions all and that we just need to deal with it. Period.

I don't believe that anymore. I think God knows he is fallible and therefore he extends mercy to us in a way to "make it up" to us. Mercy to me is that Carolena does look perfect on the outside. She is not still in the hospital and did not undergo any heart surgeries in the first week of life. Of course I think God extends mercy in many different ways. I think God knows exactly how much we can handle. For some, even though terribly tragic, the lose of their child is God extending mercy to the parents.

Which brings me to my last point. Faith.

I know God does not perform many miracles. Even Jesus when He was with us on earth did not perform all that many miracles despite how many suffering people pleaded with him to do so. Jesus, nor God, performed the ultimate miracle in saving himself from being executed for no real crime. Jesus was teaching us that we must have faith because God is not just going to step in and perform a miracle just because we ask or pray for one. Even though God does not answer our cry for a miracle when He makes a mistake (therefore being just and fair in correcting what He did) we must still have faith that God exists, that He does know what is happening and that He will have mercy on us when He makes a mistake.

I have no idea what will happen from here. I know God already knows what will happen and I have to trust in Him to know what is right for Carolena and for my family. I have to believe and have faith that God does have a purpose for everything that happens even when he loses track and mistakes are made. Carolena still has a very long road ahead of her with super scary surgeries and lots of risks but I have to have faith in God.

Halloween 2009

2009-11-02T10:41:00.004-05:00

The boys were so excited for Halloween this year. Todd LOVES costumes and dressing up. Of course Kyle LOVES getting all the candy! The boys got their costumes a couple weeks before the event this year. Which is a big change for us. We are usually scrambling around the day before trying to get the perfect costume in the midst of all the other slackers who have procrastinated to the last minute.
Kyle was GI Joe (really just an army man costume but he did not know the difference). After much back and forth Todd finally settled on the Incredible Hulk. The child would have had 10 costumes and changed throughout the night if we would let him. Kyle was so excited that he was going to get his face painted in camo colors and Todd was super jazzed about getting to spray his hair green. So cool. This is what Halloween is supposed to be. Little C was a bumble bee. She has the cutest little fluffy tutu. Although we did not get any pics of her on Halloween night she was dressed up. We dressed her again Sunday and took her pic then.

Of course something had to wait until the day of so our pumpkin did not get carved until Halloween morning. The boys decided how they wanted the face to look (still cannot believe they agreed from the beginning and there was no fighting) and I did the carving. Our pumpkin had real blood on it from me cutting my thumb. At least I showed the boys how dangerous knives can be! I also got to make some banana bread, roast pumpkin seeds (which noone is eating) and got caramel on two apples. Considering where I thought I would be at this point in time, I just thrilled that I got to do all this, dress up and go trick or treating with the boys. BTW, Kevin is the scary clown. He scared many, many little children.

We all really enjoyed going to Auntie Paige's and Uncle PG's to do a hay ride and run around to tons of houses getting gobs of candy! The boys really cleaned up on the chocolate. When did everyone start buying the good stuff...I never got that many candy bars when I was a kid. Seriously. We used to get super excited if we got like 5 candy bars. Sheez. Kids these day are spoiled. To top it all off the boys got little buckets with full size candy bars from their babysitter (and our neighbor) and full bags of candy bars from our other neighbors. I think will be eating Halloween candy until Christmas! Actually I am thinking Kevin will be bringing a bunch to work soon.
After the trick or treating we hung out at Aunties house partying until the boys finally crashed around 10pm. Never thought they would actually go to sleep with all the candy they ate but I guess the day was just soooo long and fun filled.

Past Time

2009-11-01T22:04:00.002-05:00

As usual, I have started several posts which are not finished that I had the best of intentions of finishing and posting. And as usual, these posts are languishing in my saved drafts.

Oh well.

So many things have happened since my last post. I really did have the best of intentions of writing about them individually. I really dislike doing one large post giving just the brief highlights but in the interest of getting this all down here comes another all inclusive post.

In no particular order here is what my life has been.

The second of my three cats passed away Oct 11. Each time I lose a kitty I feel like I lose a little of my connection to my past. I had Buca for 13 years. 13 years in which I graduated college, got my first job, moved back home, felt the lose of a good man I considered a brother, devastated by the lose of my father, experienced depression and panic attacks, met my husband, got married, had three children, bought my first and second homes...the list is just endless. Any yet with all these things that have happened I know there is so much more waiting in my future.

Todd got a second award at school. He was awarded the best writer for the month of September for his class. I am just so proud he is doing so well at school. His teachers say he is quite the athlete...so I get really excited when he gets an academic award. I really worry about him. Kevin says I baby him too much. I have no way of explaining my connection to Todd other than he is my heart. Don't get me wrong. I love all my children equally but Todd is just something else for me.

Kyle is rocking right along. He is so adaptable you would never know our life (and his) has been in such turmoil lately. Kevin and I met with his teacher for our conference and we learned nothing new that we did not already know...he is extremely bright (one of the smartest in his class). He is still a little self centered but extremely sensitive. He thinks on a higher level making it hard for him to make friends. He drives me nuts but I have long ago determined that it is because he is just.like.kevin. No joke. I find myself getting aggravated with Kyle over the same stuff I get aggravated with Kevin. It is really creepy how close our kids mirror us.

Little C is doing as well as she can. She is having some serious eating issues. We have taken her to the GI doc and he is confident it is just reflux and irritated esophagus. I am not too sure. Seems a little simple for the way she is acting but who knows. I have to trust that the doctors know what they are doing. C just started a plan with meds. If the first does not work, we go on to the second, etc. I really hope this works. I am terrified that she is not getting what she needs to thrive. She is already struggling with weight gain because of her heart. C did just fine with her tummy surgery. She was only in the hospital for 4 full days, the 5th day she was discharged. I am very grateful for all the fabulous doctors who took care of her. We have recently learned that the cardio docs want her to have her Glen around 4 months of age. She turns 4 months old Dec 19. We will get a more firm surgery plan on Friday. I have so many feeling about this but I just cannot put them here now. I hope to do so soon.

Paige and my good friend Megan hosted a beautiful baby shower for me and little C. I was so overwhelmed with how beautiful everything was. The decor, the theme, the drinks, the food...everything was just so sweet and thoughtful. I was truly blown away by how many friends were able to attend and how little C's story is spreading. So many people are praying and thinking of her. I am so humbled knowing how many people care for us and Carolena.

These are the things I hold on to most when I get so frustrated that I hit my solid bedroom door and almost break my hand. I would highly advise hitting something much, much softer.

And no matter how truly pathetic I feel...I know how much worse everything can be. I AM grateful C is doing so well but I am only human and I can only handle so much before I break.

I know there is so much more but I just do not have the time. I would like to put out to everyone who is praying for Carolena (whether you read my blog or not) that Kevin and I feel her being surrounded by these prayers and that they are working. She will not be healed but she will have a great life. Kevin says she is not a miracle baby, she is a blessed baby. I agree. She is blessed and we thank all of you who says prayers for her and us. Thank you.

Fort Long

2009-10-02T09:55:00.003-04:00

Every night before I go to bed I go into the boys room and check on them. I make sure they are under the covers and kiss them one more time. Last night the following is what I found:

I had to get Kevin to come and look. The boys made this fort all by themselves. They were so quiet doing so I had no idea anything was going on in their room until I went to check on them. I thought maybe Kevin had helped them but nope, they did it all by themselves. The boys are just too funny.

Cutest Gator Cheerleader

2009-09-26T18:37:00.003-04:00

Carolena At One Month

2009-09-24T12:20:00.005-04:00

Carolena officially turned one month old on September 19. I was going to put this post up on her one month birthday but then lots of crap happened. So, to document her one month with us, here is what she is doing...well ya' know doing in the loosest sense...

- She can roll over from her tummy to her back...seriously.

- She likes to "stand" when Kevin holds her up

- She is 22 inches long and 7lbs, 15 ounces

- She is still wearing mostly newborn sized clothes but is moving into 0-3 sizes

- She is wearing stage 1 diapers b/c we did not want to waste too much on newborn sizes

- Her features are very delicate

- She has really long legs, arms and fingers

- She is very alert and will spend long periods of time awake

- She is not a morning person, loves to be awake at night

- She is sleeping very well and will go 3 to 3.5 hours over night

- She does fuss and fidget alot but who can really blame her with her issues

- She is still really pink, we have not seen her turn blue yet

- She loves to stick her tongue out and chews on stuff

- She does not love pacifiers...I still have hope she will take one (I have tried 6 different brands now)

- She loves to be held and loves to sleep in bed with us

- She has been holding her head up since week one

- She is super, super stong

- She hates to be messed with

- She really likes her brothers and sits very still when they hold her

- She loves her bath, she is very calm and peaceful in the water

- She loves to cross her feet when laying down or sitting, this is her preferred position

- Her hair is still dark, with a little mohawk action

- Her eyes are still dark but are starting to lighten up and look blue

- She is smiling, it is NOT just gas

- She laughs in her sleep

- She makes sweet little sucking motions and sounds when sleeping

Here are some recent pictures of Carolena with her brothers and her favorite way to sleep...

When Does the Sun Shine for Us

2009-09-20T11:46:00.004-04:00

Right now I am looking at the expensive wood floor (that used to be covering the concrete in my bedroom) all layed out in my living room to (hopefully) dry out. I watching and listening to Carolena fret, fidget and fuss. And I am questioning whether good karma, the golden rule and a merciful God really and truly exist.

I have heard and read that happiness is a choice. You choose your attitude every day when you wake up. Okay. I like that. I choose to be happy and positive every day when I get up.

And then the day starts.

And I struggle with my choice because really there is too much wrong going on right now for me to be able to see the happiness.

Todd flooded the bathroom in my bedroom yesterday. He stuffed way too much toilet paper into the toilet and then tried to flush. Water was pouring out of the toilet. All over the floor. I had no indication that anything was wrong until Todd said something about the toilet getting water on the floor as he was trying to get the plunger from the other room.

I do not see the humor in this situation. I do not find this funny in the least. I am wondering what in the hell is going on. What have I done to possibly deserve this latest catastrophe. And while I understand that on the grand scale on things this does not rank up there with Hurricane Katrina or the Iraq war, this is a catastrophe for me.

Kevin and I worked very hard to redo our bedroom just 2 years ago. We did all the work. Stripped the room bare and started over again. Took us longer than the one week we had allotted. The thing I loved best about our room was the flooring. I pushed for the oak floor that cost a fortune. Kevin thought the other less expensive composite wood flooring would be just fine but gave in to my request. Now Kevin is doing his best to save the wood from being ruined from the 3 inches of water that covered it. He has had to remove base boards, door framing, the wood floor, the padding underneath the floor and will need to put it all back together again should it actually dry out. Most of the water went into my closet. While none of my shoes were actually ruined they are now in one corner of the room by Kevin's side of the bed. Everything is pulled apart in our room. To make it worse, since Carolena is sleeping in our room as well the whole room and bathroom need to be cleaned as soon as possible since it was toilet water that when everywhere. And not clean toilet water.

What makes this so upsetting is that we have been on the boys forever about how much tissue they are using and putting in the toilet. We have talked and talked to them. I even bought some wet wipes for them to use to cut down on the paper. Yet with all this talking and accommodation to give them the independence of wiping their own backsides they still do not listen.

We have serious issues with respect in my house.

Respect from the boys for the house and the belongings, respect for all of their toys, clothes, etc., respect for treating each other nicely, respect for us as their parents. Kevin and I are not immune to the respect issue ourselves. We scream and yell and fight and argue. And even after approximately 3 years of marriage counseling we still fight dirty. We have all lost our sense of respect.

In a time when we all need to come together as a family we are separating. In many different directions. And we are shattering.

Much like when a windshield is hit with a tiny little rock thrown up by the semi in front of you on the interstate. When at first you barely notice the teeny tiny little chip but all of a sudden there are cracks spreading everywhere. It cannot be put back together. You need to start over and replace the whole thing. Unfortunately there is no do overs or replacing in life. You have to mend what is there or stop it from happening in the first place.

Kevin and I have received no let up on Carolena either. We were prepared for all the worst case situations but we obviously did not prepare enough for this horrible limbo we are in. It seems that everytime a new test is done there is something else wrong. I guess this is what my MFM doctor was referring to when he said there could be so many more issues wrong with the baby because of the heart issues. Well, we chose to be positive and we chose life for Carolena. We chose to fight for her. Give her a chance. And that has not changed. But seriously when do we get a break. Both of us are under enormous pressure with her care and noone truly understands how delicate a balance she is in right now.

Carolena does not eat well. She has been gaining weight and we are thankful she does not have a feeding tube but honestly at times I think in a way it would be easier on all of us. She fights, fusses, fidgets, pushes the bottle away with her tongue and hands, she cries and grimaces in pain and refuses to swallow even a little bit. It takes a good hour to try and convince her to swallow just one ounce of liquid. The catch is that she cannot refuse to eat. We HAVE to force her to eat. And to top it all off, she throws up what little we can get down her. If this continues she will be put back in the hospital. What is the worst is that she does not nurse at all, she only takes bottles. So, after trying to feed her for an hour I then have to turn around and spend another 20 mins pumping to get the breast milk to feed her. Because of her weight gain issues she is on a mix of half breast milk and half formula. I spend all my day washing bottles and breast pump items and then trying to feed Carolena. My hands are literally becoming raw from all the hot water and soap with the number of times I am washing stuff. I cannot afford to just rinse her bottles, they all need to be washed in super hot soapy water or boiled as she cannot get any infection at all...no stomach bugs as that could be salmonella which would be deadly for her as she has no spleen.

We do have her home but in some ways it is much harder on all of us. I am here but there is not much I can do with or for the boys as I have no time left to do so. Both Kevin and I are exhausted because of the way Carolena eats. There is no quick 20 min awake period in the middle of the night for her feedings. By the time it is all said and done you have been up for well over an hour. She eats every 2.5 hours. Does not leave a lot of time for sleeping. Or eating or anything else for that matter.

We both need a break but cannot afford to do so. We cannot leave Carolena with just anyone so that throws out Kevin and I doing anything together. If I go by myself then I am leaving Kevin with Carolena and the boys which is proving to be much harder than we anticipated. The boys are fine with Carolena but are not adapting to the fact we have less time to do stuff for and with them. They are still spoiled and selfish (by our own making...we know) and it is really too much to ask one parent to take care of all three of them at the moment. Not that Kevin has not offered as he has. But, he still gets a break during the day where he has no kids to watch or do stuff for. Even though it is when he goes to work and his work is just horridly stressful right now, it is still a break from kids. A chance to just be. I am not looking at having this kind of break for a very, very long time. Carolena cannot go into daycare.

Weekends are easier for me as we are all home but I am resentful that I get stuck in the house all day every day with the baby because she cannot go out. This is not a suggestion from the doctors but an adamant you must keep her secluded at all costs. Not an option. Each time we have taken her somewhere or allowed people in our house it is taking a huge risk. And each risk is stressful for us. Kevin and I would have a very hard time forgiving ourselves if it was through our selfish need to get out that we took a risk that exposed Carolena to something and she got really sick.

Kevin and I both feel we are living under a black cloud right now that we just cannot shake. We try to be good people as God wants but to what end. We are not happy. We chose to be happy but we are not. We all just want to sun to start shining on our lives and family again.

About to Break

2009-09-20T10:16:00.004-04:00

If you are a fan of Linkin Park then you will of course recognize the lyrics below as the song One Step Closer. If you are not a fan, then you will have to take my word for it.

Right now, these lyrics just about perfectly explain how things are going in my world. Wish I could yell my way through the song like the lead singer. Maybe would relieve some of the stress. Something has to or Kevin and I will both break and I am not too sure we will be able to put it all together again.

I cannot take this anymore
I'm saying everything I've said before
All these words they make no sense
I find bliss in ignorance

Less I hear the less you'll say
You'll find that out anyway
(Just like before)

Everything you say to me
(Takes me one step closer to the edge)
(And I'm about to break)
I need a little room to breathe
('Cause I'm one step closer to the edge)
(I'm about to break)

I find the answers aren't so clear
Wish I could find a way to disappear
All these thoughts they make no sense
I found bliss in ignorance

Nothing seems to go away
Over and over again
(Just like before)

Shut up when I'm talking to you
Shut up, shut up, shut up
Shut up when I'm talking to you
Shut up, shut up, shut up, shut up
I'm about to break

Everything you say to me
(Takes me one step closer to the edge)
(And I'm about to break)
I need a little room to breathe
('Cause I'm one step closer to the edge)
(I'm about to break)

One Month

2009-09-18T14:21:00.002-04:00

Carolena is officially 4 weeks old as of Wednesday although technically she is not 1 month old until tomorrow. I have always been a little confused with how this happens...the actual number date does not match up to the number of days. Please do not try and explain the time phenomenon to me, I do in fact understand how it works it just still gets me how it all works out.

Anyway, the little miss has been home over 3 weeks now. So awesome. And soooo very tiring. Kevin and I get to deal with all the normal infant behavior with the added bonus of trying to decipher Carolena's every move. Is her tummy hurting because she has gas like all infants or is she experiencing problems because of her malrotation? Is she screaming because she is cranky like all infants or is she not feeling well because her heart is not working efficiently?

Ugh.

Double UGH.

I have a hard enough time with the normal infant things without adding on constant worry about Carolena's fragile health balance. Her health could literally turn on a dime and we need to be ready to jump. Immediately pack up, jump in the car, call the hospital, med transport Carolena to St. Pete. No passing go, no collecting $200.

Tuesday we were in St. Pete with the cardio doctor for her visit. Carolena is still plugging right along. No symptoms of heart issues at the moment so we continue with the waiting plan. However, the cardio doctor did say he is okay with Carolena getting surgery to fix her malrotation sooner rather than later. This is based on her cardiac condition being stable right now and if the stomach surgery can be done now than it is one less thing to worry about once we start in on doing the heart surgeries. So, it looks like we will be having surgery in the next month or two. While I am completely freaked out about her surgery, especially because her heart is still unrepaired, I know that as long as all comes out well then there will be one less thing for us to be so worried about. Doing the surgery will drastically reduce the risk of her bowel twisting and her possibly dying for it. However, she could have serious issues under anesthesia because of her heart. Oh joy. Good news from cardio doctor is that we do not have to see him again for 2 weeks. I will take what we can get.

The best news we received from this week was from Carolena's appointment with her pediatrician yesterday. And just in case you missed it, we have seen at least one doctor, sometimes two or three each week since we have been home. I am terrified of how I will be able to do all this when I go back to work, which at this point is not an option. I have to go back to work. So, her pedi visit went well yesterday. Hurray! She gained 7 ounces in one week. She officially weighed 7lbs, 15oz. Awesome. Still not quite a return to birth weight but very, very close. Her pedi was very pleased with her progress and does not have us returning for 3 weeks. Holy cow, I could so get used to having a week with no doctor's appointments.

Today I found out a little more about Carolena's hearing. Because she was admitted to the CVICU right after birth she automatically gets screened for everything...vision, hearing, etc. Her vision was just peachy, her hearing not so much. Of course all the docs said there could be many, many reasons none of which is actual hearing loss. Had her follow-up appointment today and the doctor is concerned because her testing so far is showing congenital nerve based mild hearing loss. If confirmed she will more than likely need a hearing aid to help her get to 100% hearing to prevent any development delays with speech, etc. Oh goody. One more doctor, one more round of visits. Just what we need.

So. We go one step forward, one step back. Such is the life of a child with complex severe congenital heart disease. BUT, Carolena is still at home. And all is good with our world.

Some Random Saturday Pics

2009-09-12T15:20:00.004-04:00

Todd got student of the week...I am so proud of him

Woo hoo...GO GATORS!

Sweet little Gator....

Bath Time

Carolena Loves her Bath

Deceptively Normal

2009-09-09T22:06:00.003-04:00

Only time to do a quick post as need to pump to get some more mama's milk for the little Miss. Right now we are still moving along. Carolena is still managing quite well on her own. We are pretty much in a holding pattern just waiting to see how Carolena will progress as she gets bigger and older.

My meeting with the cardio doctor today pretty much confirmed that we are just waiting.

Waiting.

Waiting for Carolena to have symptoms.

Which of course will scare the crap out of me. She will have a hard time breathing, will turn blue, will not want to eat, etc. I am hoping I do not have to watch her health start failing. I am hoping we have a firm plan of action by then.

Right now I am okay with waiting. Being a scheduled person I am not sure how long I will be okay with waiting but for now with waiting, we get to be at home.

Carolena likes to be home. Tonight, she is the most relaxed I have seen her in two days. Not that Pappi and her house are not fantastic but I really think Carolena already understands what is going on and she appreciates her home. I want her days at home to far outnumber her days in the hospital. I hope we are successful.

Just to add to Kevin's post...the cardio doctor said today that we are just waiting to see how Carolena progresses. We do not have any heart procedures currently scheduled. We will not have anything scheduled until Carolena needs to have a procedure, including the heart catherization. We could go one day, one week, one month or more until Carolena needs a procedure. It all depends on her right now. The one additional procedure we will be having is surgery for her malrotation. The GI doctor really wants to address this and correct with surgery sooner rather than later (of course we the okay of her cardio doctors).

So, all in all things around here are deceptively normal...definitely maybe.

1st Cardio Check Up Visit

2009-09-08T20:56:00.003-04:00

I'm not as good of a writer as Ashley, so bear with me! Today was our first trip back to St. Pete for Cardio check up visit. And let's just say it was an eye opener of what is to come. Our appointement was at 9:30AM, so we stayed at Pappi's in Clearwater while my mom stayed at home with our boys to take them to school. Of course 9:30 fell right when Carolena was to eat, so that got thrown off. Then, Dr.'s office acted like they didn't know why we were there. After they realized we were to get an x-ray and then head over to the other building for Echo and Dr. visit, we had to wait while they got a Script from the Dr. for the X-ray. Carolena only managed to eat about 20mil from the bottle during this wait time. Finally got X-ray and then headed over to Dr.'s office and wait to be called in.
While with nurse to get all those lovely wires hooked up, Carolena is all worked up and starving by now. The nurse then has to take blood pressure in three diffreent areas for some reason, which is near impossible with Carolena not holding still and crying. As the nurse finally takes a break so we can try and feed her more, come to find out this lovely daddy just stuck the bottle back in the diaper back upside down so now have empty bottle and very wet bag. So Ashley starts to breast feed her and during this time nurse finishes her check up. But well before Ashley can finish feeding, we are asked to move into another room, which of course throws off the feeding and now Carolena, with just a little food inside her, just wants to rest. After a little while, we go into Echo room and waking up Carolena and stripping her down is the final straw. Ashley and I are now litterally holding down her arms and feet while they do the Echo and Carolena is just I'm sure on the verge of passing out she is so histarical. They finally just stop the Echo so we can calm down our daughter. I run to the car and get her other bottle of breast milk and upon return find Ashley sitting quitely with Carolena pretty much a sleep again. She has been told the Dr. doesn't want us to feed her until he sees us. I didn't understand this but give in for about 5-10min. FInally, I just know Carolena is about to wake up again and will be virtually impossible to feed her once histarical again, so I tell them I have to feed her like it or not but at that exact time the Dr. walks in.
He is Dr. J, who I met moments after Carolena was born while he did her first live Echo (Ashley had never met him as she was still in Recovery). He is the one that found the Pulmanary Veins out of place. So, I start feeding Carolena while he proceeds to ask us a bunch of questions. One of his first comments is "man, she (Carolena) is complicated". Well aren't all heart baby's?! He is just perplexed she is doing so WELL and that everything (blood/oxygen/breathing)is still "balanced" (I attribute this to all the great people and prayers they are sending Carolena's way!). This is good news of course but he goes on to remind us that it all could change VERY QUICKLY. You can just tell he is very apprehensive Dr. H had let us take Carolena home so quickly. But after Ashley answers a bunch more questions, he comes right and says, "you are dead on and seem to know exactly what is going on, the risks, and REALLY know your baby well". Well duh, she just incubated her for almost 10mo and then lives with her every moment of the day since being released from the hospital. He goes on to say he is cool with us still having her home with us but is very concerned about her weight gain, or lack there of, and we need to go back to our Pedatrician on Thursday for another weight check up (we just saw him Monday, and thankfully, she had gained 20z since last Thurs). He also wants us to meet the new Dr. that does the Heart Cath, who just happens to be taking over this procudure from Dr. J. He insists he is very experienced but just feels we need to meet the "teammates" that are supporting Carolena for when the time comes. He also wants us to meet with Dr. C, the surgeon, again since it has been 2mo from our first visit. He is not saying anything is needed right now, but again, wants us to be preparred for whenever. We do know sometime between now and three weeks, Carolena will have a heart cath. Dr. J also said to fully expect open heart surgery to fix the pulmanary veins before the 4-6mo Bi-Directional Glenn surgery. So between now and 2mo, Carolena more than likely will get her first open heart surgery.
I came home tonight to be with boys and get back to work, but Ashley was already staying another night up north to visit with the GI surgeon in the AM (they don't see patients on Tuesday's so couldn't schedule same day) for check up on the Malrotation (Stomach/Intestions flipped from side to side). If they cannot set up meeting Heart Cath Dr. tomorrow as well, then Ashley has to go back to Tampa office on Friday. And remember, we now have to get Carolena to Ped Dr. on Thurs. for weight check. So that makes at least one Dr.'s visit EVERYDAY this week and Monday was a holiday!
So, yes, we are pleased Carolena got good marks on her check up but it was a rude awaking of what is to come. I'm sure once we get the hang of who, where, when, it will become easier than the first day as today was but it is still going to be exhausting. And more than likely, Ashley will take the brunt of it as she is still on maternity leave.
Thank you all again for your prayers, concern, and help. I have to say, we are blessed to have so many friends and family that care. From the grandparents and siblings on both sides watching our boys numerous times, even when sick with Swine Flu, to friends bringing over meals and even mowing/weed eating our yard (guess he didn't like having a trashy looking neighbor!). We feel very awkward accepting these kind gestures but it has helped give our kids a good meal on night we were totally not preparred, so guess that is the point of it. I do have to remind myself that things are actually great right now and while they are good (Carolena home and not on any machines), we need to live as normal as possible. Carolena will be in the hospital again before we know it, but right now we should be able to take pretty good care of ourselves and enjoy our time together as a family.
Kevin

The First of Many...

2009-09-03T22:36:00.002-04:00

Yesterday sucked.

Today really, really, really sucked.

AND the best part of all, we are only just beginning. There will be many, many, many more really bad, truly awful days.

Kyle has been sick with Swine Flu since last Friday. This particular flu is not so bad unless you are Carolena. She hits all the high marks of being high risk of death from Swine Flu if she gets sick. She is less than 6 months old, she has an underlying condition with her congenital heart defects and she has no spleen which means her immune system is missing one of the vital organs in fighting the flu. Seriously.

Of course as Kyle gets better, Todd gets sick. Yesterday I got to pick him up from school for the first time in over 2 weeks. As soon as he gets in the car he sneezes. As I look back at him I can just see that he does not feel good. By the time we get home he is running a fever and admits that he feels a little sick. I am so over the flu.

Kevin and I both just went to get our flu shots. I figured while I was there I would triple my vaccination fun and get pneumonia and tdap as well. Yes. I am crazy like that. Just one of the joys of having no spleen. Apparently I should be taking a low dose of antibiotics as well (just like Carolena) but I do not. I guess I just like living on the edge.

So today begins with no sleep as Carolena had a rough night and I get to deal with all of it as Kevin is still sleeping outside in the scamp with Todd to keep him and his germs out of the house. Totally sucks. Then I get to feel like a truly terrible mother as Todd is dropped off at my sister in laws house because we just cannot risk Carolena getting sick. I am now kicking both of my older kiddos out of the house when they feel just awful and want nothing more than mom and their own bed. To top it all off, I take Carolena to the pediatrician for a follow-up appointment and learn that I am totally failing in my care of her. At now just over 2 weeks old she should be close to if not at her birth weight. Well, she is not even close. Even better, she has lost even more weight than when we took her to the doctor last week.

Weight is key when it comes to heart babies. If she is not gaining weight then there are all kinds of problems. Her heart could be failing. She could not be getting enough for her brain to develop correctly. And on and on and on. So even though she has been nursing every 2.5 hours it is not enough. She is not getting enough food. On top of everything else I now have to ramp up her feedings. I am at a very low place right now and I cannot even think how much worse this is going to get.

Occasionally I think it would almost be better if she were still in the hospital. At least then with it staring me right in the face I am not able to get any grand ideas about how normal she is. Carolena is not normal and she never will be.

The other day I prayed to God that I will accept whatever He has chosen for Carolena but please, please do not let her suffer. I think daily about losing her and it sucks. And with more confirmation making it real for me it sucks even worse. I am being humbled by this whole experience of having such a sick baby and do not think for one minute that Carolena is not a very sick little baby because she is. And this is something that I cannot let go. She is home for now but I do not know how long that will be. I still have not completed her nursery because the more I do the more attached I am to her. I am scared everyday and today truly sucked.

I just LOVE her little feet

2009-09-02T10:24:00.002-04:00

And I am so happy they are not blue/purple anymore...yea!

6 Days, 6 Nights and Counting

2009-08-30T19:34:00.008-04:00

Most of the day I forget that Carolena has such severe heart defects and that we need to watch out for any symptoms of her malrotation. See looks and acts just like a normal infant. In a way I am grateful that we are not currently dealing with more issues. On the other hand every time I remember that she is different I am sad all over again. I know that she will be back in the hospital facing 4 different surgeries...this is not a question of if anymore but when. I really hope we get to stay at home as long as possible before having to go back to the hospital.

Sweet Angel

Of course just to remind us of how precarious our situation is, Kyle contracts the swine flu from school. Total separation between me and Carolena and the boys has been the rule in our house since Friday. Let me just express how awful it is to have to choose between my kiddos. I have one who feels miserable from the flu but I cannot even give him a hug without then having to totally decontaminate myself before handling Carolena again. This does not just mean washing my hands but, taking a shower, changing clothes and using like a gallon of hand sanitizer before even getting near her. Since I am nursing her I would have to do this every 2 hours of the day. So, not really feasible for me to be the one to take care of the sickies. Kyle has been okay with it but last night he wanted me to hug and kiss him. Horrible decision to make whether or not to take the risk. Of course I did give him a kiss on his head and helped with his medicine (which apparently tastes awful) before going to disinfect myself again.

First Day Home

So far Todd has not been sick but just as precaution he has been quarantined with Kyle. Fortunately we are able to shut off half our house for the boys to be in. PG was kind enough to let us use the scamp for the last two night which is where all the boys have been sleeping. Today the boys are back in the house but under very severe restrictions.

Before Lockdown

All of this just reminds me that we have a different life now. One that involves severe restrictions and having to choose between the kiddos. This is never want I ever wanted to happen but it is where we are. I cannot risk Carolena getting sick. Right now she has to take priority. I keep thinking that if all goes well and God answers all of prayers we will be a "normal" family again in a couple years. After Carolena has her heart surgeries and stomach surgery. After she is not so fragile health wise. After we settle in and move forward leaving all the hospital visits behind. I will know we are there when we finally get the okay to only see the cardiologist once or twice a year. I hope and pray we get there.

Such good big brothers

For now I am grateful that I am home with Carolena. That she does not have to be on oxygen. That she does not have a feeding tube. That she can not only eat on her own but nurse. Is it frustrating, absolutely. But I get to be a parent to Carolena right now which is far, far more than most moms with heart babies. I feel blessed that my worst complaints right now are that she is impatient with nursing and that we cannot just get up and go somewhere (due to the isolation).

God is listening. I know this.