Wednesday, September 30, 2009

Feeling pretty good

Caroline has continued to feel pretty good this week. We are still experimenting with thickened formulas and alternative feeding methods. The changes are definitely improving her ability to keep food down, so we are pleased and motivated by her progress. Its a never ending process of counting calories, monitoring fluid intake, and questioning of whether she is really getting enough, but I'm sure all parents can relate to wondering if their child is getting all of the nutrition they need.
We are happy to have 2 months under our belt since Caroline's heart surgery. Its nice to know that with each passing week she is stronger and healthier than the week before. The cardiologists warn us that it will take about 6 months for her heart to heal from the surgery and strain induced by the hole in her heart. Until then, we are told to be cautious about her catching a cold or the flu. We will get all the vaccinations we can and in the mean time avoid public places where Caroline could potentially get sick. We're definitely sad to see the end of our summer weather and an early start to the cold and flu season.

Tuesday, September 15, 2009

We might be on to something....

We are happy to report that Caroline has been feeling a bit better over the past couple of days. We are trying thickened formula administered through a syringe (as opposed to the pump) and it seems to be a bit easier on her system. It certainly hasn't solved the problem and manually syringing formula is quite tedious, but Caroline seems to be stronger and more energetic than she has been in weeks...thank goodness! It feels good to come across a minor change that is actually producing positive results. We have tried numerous formulas, feeding methods, and medications, which have all resulted in virtually no improvement. Perhaps its a testimony to her improved strength and health since the heart surgery,or perhaps we are getting smarter.......most likely the former. The next step is to continue experimenting with thickened textures, including pureed solids in hopes of slowly expanding Caroline's tolerance for more food at a faster rate. Again, this is going to be a very slow process, but perhaps we are actually in a place where we can be successful.

Caroline had her final post-op cardiology visit last Tuesday. Dr. Stamm gave her a clean bill of health, discontinued her final heart med, and doesn't want to see her again for an entire year! I was shocked. We thought for sure there would be more visits in the upcoming months, but apparently Caroline's heart is doing exactly what it needs to be doing. The hole is completely patched with no residual murmur. The surgery seems to have been a complete success. This being said, her heart is not 100% healed and it is still enlarged due to the extra strain put on her heart pre-surgery. The enlargement will take months to subside, and until then, her heart is still weaker than a "normal" heart, but this is all to be expected and we'll re-visit that issue at next year's cardiology appointment!

Despite the recent set back with the return of the vomiting, we've managed to have a fun end to our summer. Here a few pics of Caroline enjoying her friends and family.

Yesterday Caroline got to meet her newest friend, Linnea Jane.

Caroline had a great weekend with two of her Aunties. They even brought her a new slide!

Caroline enjoying the view from her new perch. She's slowly gaining confidence with the sliding part.

Sadly, we had to say good-bye to Grandma and Grandpa last week. We had such a great visit. Its always hard to watch them go back to Florida.

Friday, September 4, 2009

A Bump in the Road

Hi All -

Caroline is still doing well in many ways, but since our last post, her reflux and vomiting has really come back with fury. It was starting to rear its head last week, but it wasn't that bad and her weight gain was excellent, so we weren't all that worried. Well, its continued to get worse and we are now back to where we were pre-heart surgery. Caroline is vomiting day and night and we are struggling to keep her with enough nutrition and fluids to help her grow. Some days are better than others and the G-tube helps us to keep a fairly constant flow of formula going into Caroline's system, which helps. However, the reflux is significant and we've definitely seen a dip in Caroline's energy level, motor strength, and willingness to eat food orally since the vomiting has returned. Furthermore, we can't help but worry about dehydration and the possibility of Caroline aspirating the reflux. Because this was a major issue for Caroline pre-surgery, her doctors are not overly worried that it has returned........sometimes to the point of frustration. They want to give her some time to see if she can continue to thrive despite the reflux now that she has a healthy heart. Mike and I are, of course, feeling pretty sad and frustrated by the return of the reflux......we had a glimpse of how healthy Caroline can be without the vomiting and we really wanted to keep it that way. We're hopeful that we have a few advantages on our side that weren't with us before. First and foremost, Caroline's healthy heart. Second, her age and increased strength mean that she could grow out of this stage in the not so distant future. Third, she is now of the age where it is appropriate to begin putting pureed foods into her G-tube, allowing her nutrition from a non-liquid source. We've heard many anecdotes related to improved reflux with the introduction of solid foods. So, we are left to experiment with different feeding schedules, nutrition sources, and medications to see if we can minimize the problem and keep Caroline healthy, strong, and growing. Caroline sees her cardiologist on Tuesday to ensure that no heart complications are contributing to the problem. If the reflux seems to inhibit Caroline's development in the month's to come, there are some medical options that we may pursue to help minimize the problem. We're just hopeful that we won't have to go there as the next steps appear to be somewhat invasive for Miss Caroline.

We'll keep everyone up to date on how she progresses and if anything comes to light during the upcoming appointments. We'll end on a celebratory note.....Caroline only has 5 more days until her sternal precautions are lifted. That's right...Wednesday marks six weeks post surgery, which means her sternum should be healed and strong enough to endure any motion, bump, bruise, and pull that we can muster. Oh... happy days!