Thursday, June 30, 2011

And After All of That

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. 

Monday, June 20, 2011

The Diet

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 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.

Wednesday, June 8, 2011

A Day in the Life

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 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.

Wednesday, June 1, 2011

The Fundraiser

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  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

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 did that happen?