I am not sure that I have ever adequately explained Juliana's feeding issues to anyone other than David. It's a complex issue and there are still more questions than answers. I want to try to explain what's going on because I think that some people are afraid to ask... and other people ask very frequently.
I have my theory and different doctors have their theories. I'll explain each.
My theory - my theory is that she did not eat much in the NICU because she was too sleepy and too tachypnic. My evidence for the sleepiness - I would visit her for eight hours a day and she would literally be awake for a total of 10-15 minutes during that time. Her respiratory rate during that time would sometimes be as fast as 100 breaths per minute. You try eating while breathing that fast and let me know how it goes! I blame both the sleepiness and the respiratory rate on her heart defect.
Days after we came home, she began to exhibit extreme signs of GI pain. There were times I really wanted to pack her up and take her to the hospital but I knew that there was nothing that they could do for her there. (We never would have been admitted anyway, she had a bad habit of calming down when she saw the bright lights in doctors' offices.) The GI pain was a reaction to something in my diet (I still don't know what). It caused reflux and near-constant pain. She would eat a little, but just enough to take the edge off. She typically ate about 20ml per feeding - that's just 2/3 of an ounce.
But the last straw was when we tried Neocate. She felt immensely better on Neocate - she stopped crying in her sleep, she stopped having diarrhea, she stopped screaming when food hit her stomach. But she started vomiting violently (these episodes were very scary to all of us. She would stop breathing and she would flail violently). The vomit increased her oral aversion and she just shut down orally - she would gag on anything put into her mouth. For the next month or so (while we waited for the g tube) she did not eat anything by mouth.
The pediatrician's theory - the initial theory was that J didn't eat due to low tone in her mouth. I don't think that's the issue. I have seen J eat very well in moments when she was without pain (this only happened a handful of times, pre-Neocate).
The neurologist's theory - she hasn't really come out and said it but I am pretty sure that the neurologist believes that J doesn't eat because of a suspected chromosomal disorder. Kids with genetic issues very often have feeding problems, although it seems that they eventually do acquire the skills needed to eat. I agree that this is a possibility. Time (and an upcoming visit with Genetics) may tell.
The GI's theory - he doesn't have one. I asked him to theorize with me and his response was "I have no idea." We initially thought that silent reflux was the culprit but he agree with me that her reflux is very minimal and not the issue. When it comes to J's feeding issues he puts a lot of stock in the opinions of the cardiologist, the neurologist, and the feeding therapist.
The cardiologist's theory - he agrees that her heart could be partially to blame. The reactions just sealed the deal.
The feeding therapist's theory - she agrees with my theory that a kiddo who is in GI distress is not going to eat.
I do want to be absolutely clear that her NICU stay in and of itself is NOT to blame for her issues. Babies come home from the NICU without feeding tubes all the time. She was ventilated for less than 24 hours so I believe the vent did not really have an impact on her oral aversion.
Hopefully this illustrates the complexity of J's feeding issues. We've seen progress but it is s-l-o-w. Sometimes people ask when she will have her feeding tube removed. We don't know the answer to this question. As of today she takes approximately 7% of her calories by mouth. That's a huge achievement because a few months ago she took nothing by mouth! She still has some oral defensiveness and she lacks some skills. These are things that don't change overnight. She has the feeding tube indefinitely - maybe forever, but hopefully not. Only God knows if and when she will ever be able to sustain herself on only oral feeds.