Wednesday, September 17, 2008

my son, the enigma

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.


Pam said...

It is so hard to see your perfect baby in the NICU surrounded by babies that are obviously tiny and ill and in need of care. When Peanut was in the NICU she was the biggest baby in there and it was all I could do to not just snatch her up and carry her out of there. She looked perfect and I was tired of all the alarms and wires. We took the kids to a burger joint one evening just to get out of the hospital and I couldn't figure out why I was soooo uppity while we were there and then it hit me - the stupid fry alarms kept going off and I'd spent so much time in the hospital where alarms and buzzers mean bad things that when the fry buzzer kept going off I would just panic.

Keep going Kate - you are doing everything you can and it sounds like they are trying to error on the side of being extremely cautious when it comes to your sons' care. So many prayers being sent your way:)

Anne K. said...

Not much more to say here, other than thanks for the update and we're continuing to keep you all in our prayers!

Karen said...

So hard. So frustrating. I'm praying like a crazy woman over here and thinking of you all throughout the day. I wish I could do something tangible.

Jenn said...

Thank you for keeping us updated - I can't imagine how frustrating this must be. Keeping you close.

HangerMom said...

Kate - my heart broke when I read your previous post from my hospital room yesterday. And now your update today. I'm so sorry. You're very much in my prayers! I hope you'll have your little boy home soon, and well! Staci

Ruth said...

Ah, Kate. How upsetting. And frustrating. And upsetting (again).

I am praying for all of you. Thank you for taking the time to update.