Our son's MRI came back looking normal. So thank God for that. The doctors let us know yesterday that they were pretty sure something was going to be abnormal in his brain stem, but the radiologist said if they hadn't told him what they were looking for, he would have questioned why they were having the MRI done at all. The scan wasn't good enough to see the exact cranial nerves they wanted to check out, because babies are too small (and therefore the nerves are too small to be seen). But his brain looks fine.
So we're still nowhere on the gag issue, and they are worried about his hearing because he failed the very first hearing screen (last week at the first hospital) bilaterally. His optic nerves are present and we believe he sees, but we can't be totally sure about hearing. So that was redone yesterday after we left for the day and we will hopefully find out some results today. However, his hearing is not my main concern - if there is a problem we have lots of options (and I am not convinced there IS a problem...I swear he responds to our voices and when Daughter came to read him a story the other day, he perked up, opened his eyes, and looked right at her when she started reading).
Basically right now we have the world's most expensive day care (and night care) - all they are really doing with him is feeding him through the teeny tube that goes down his throat. I spend all of my time either at the hospital holding him, home pumping breast milk to bring to the hospital, or spending time with Daughter so she doesn't start to hate us and resent her baby brother for taking so much of our time.
He looks so beautiful and perfect - I am so frustrated that I can't just bring him home. The doctors won't let us even try to feed him (via bottle or breast) because they don't want to put him in danger. The neonatologist heading up the team (who happens to be the father of some kids I went to high school with: cue "it's a small, small world") sat with us for a long, long time yesterday discussing our son, and he basically threw up his hands and said our baby is an enigma. A medical mystery.
So we drive back and forth. I hook up to my Medela. And we wait while more specialists are called in to see if someone, anyone, can figure out what is wrong with my baby.