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!