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.
Monday, June 20, 2011
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 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.
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.
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 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?
Tuesday, April 5, 2011
Almost Back to Normal
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.
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.
Wednesday, March 30, 2011
The One About C That Has Nothing to Do With Her Heart
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.
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.
Monday, February 14, 2011
I Got the Shoes
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.
Tuesday, February 8, 2011
The Honeymoon
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.
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.
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