Test results show that not only does Andi have reflux of the bladder (goes into the kidney and can cause UTI's), but her stomach reflux is aspirating into her lungs, causing the need for the oxygen. So, we've put her on a different antibiotic, one that can work on both the UTI and the formula in the lungs. We're hoping to get her lungs cleared and off of O2 before we bring her home. Otherwise, in addition to the car seat, the diaper bag, the stroller, and her feeding backpack, we'll also have to tote a nice oxygen tank with her wherever she goes, even though her O2 intake is almost as minimal as you can give.
Reflux is apparently a very common problem in babies, Andi has it to the point of becoming an issue. TREAT! Her pediatrician started our conversation with, 'you know, she has a lot of problems!' ugh, my heart sank. But, he said we'll probably do the heart surgery sooner than later, as he feels that will alleviate a lot of her problems. I believe that too. Her heart is working so hard, that she's breathing so fast, that if we can get that fixed and to a more optimal pace, the feeding/digestion/reflux problems will likely go away. In the meantime, we're going back onto slow, continous feeds, to help minimize the stomach reflux (even though she takes prilosec)... so she will constantly be tethered to her backpack. Every parents dream, indeed. But, the goal is to get her weight up and the slow feeds will give her as many calories with the least amount of resistance from her body. Again - we've gotta do what we've gotta do.
As much as all of this sucks, we can't forget that at the core of all of this is one of the prettiest, strongest babies I've ever seen. She is a fighter. She is smart. She is super strong. And she will overcome all obstacles and defy all odds, if nothing else because she is incredibly stubborn, just like her parents. And to quote my own mother, "This Too Shall Pass." I just hope it passes sooner, than later!
Hi Anna. Wanted to let you know I appreciate the fuller explanations of Andibean's status on her blog. I was glad to see that you did get out to the driving range the other day. As hard as it is, it is important to try to find some balance in your life. I am just a part of strong supportive and concerned community. Please don't be shy about calling on me for any help. We love you. mollyReplyDelete