Feeding and GI Updates

We had another long day at Marybridge today and didn't get home until 6:30pm. I can't help but be so thankful for the incredible doctors on Claire's team.  I truly believe that we've somehow scored the best ones in every clinic, they've all been fantastic and have invested so much time in getting to know us and our concerns, how we feel about all of their suggestions, and in making sure that we fully understand everything.

I spent the last four days trying what they call "aggressive feeding" meaning that I spent the entire weekend focused on not much else but getting Claire to eat. I did everything I could to get her to eat as much as I could every 2 hours day and night and she DID gain weight!! I was so happy that I cried when I saw the numbers on the scale today, this means that we can hold off on talking about supplementing or feeding tubes as long as we can keep it up!

We spent almost four full hours today just working on Claire's eating and trying to figure out why she isn't wanting to eat. What we discovered is that she has reflux so bad that it goes all the way up into her nose (the doctor could hear it just with a stethoscope) so as much as I was trying not to add another medication to our routine, we are starting reflux medications to both protect her esophagus/nasal passages and to hopefully encourage her to want to eat on her own. They still believe that she is also aspirating and we had success with thickening breast milk today, however, the thickener causes complications for her Hirschprung's Disease so we have decided to hold off using the thickener on a regular basis until her swallow study next Wednesday (to see how bad she is aspirating) so that we can better determine which is the lesser of the evils. In the meantime, we have been given yet another feeding position to try that will hopefully help us get by until the swallow study. Finally, her low muscle tone causes her to get fatigued easily while eating so even when we do get her wanting to eat she often just gets too exhausted and her sucking becomes unproductive or she chokes and then she refuses to eat any more so the feeding therapist worked with me today on ways that I can help take as much "work" out of eating for her as possible so that she can eat a little more productively and for a longer period of time.

And our final piece of new news today, her colon/intestines are acting up a little (diarrhea and bacterial growth) so we're starting probiotics to hopefully help cut that out before it turns into an infection and we need antibiotics, this is a recurring thing that happens with Hirschprung's Disease so staying on top of it is very important.

We have the next two days "off" of appointments (yay!) and then we'll be back up there again on Thursday for more. Until then, we'll be enjoying the sunshine and being together!