Tuesday, October 9: Back to Reality

Well, Kirk had to go back to work today. I guess the world didn't stop spinning just because we haven't had a life outside of the hospital lately! I think it's good for him though to have a break and be able to focus on something else for a little bit. So I'm staying with Ashton all day. Today he is under the famous blue lights for jaundice. He looked a little yellow yesterday, and when they tested him this morning his levels were borderline, so they just decided to get it under control now and hopefully he'll just need it for today. I sure hope he's off it tomorrow, because while he's under the bili-lite we can only hold him for a half hour :-( Boo.

This morning the geneticist came by to examine Ashton...something that for me, at least, was a little stressful. It's not very fun to hear about all of these different syndromes he could have that could cause developmental delays, hearing loss, etc. To me, he's absolutely perfect, and the only thing wrong with him is that he has the branchial clefts and nevus sebaceous--both of which can easily be surgically removed. I don't want to think about the possibility that my perfect baby could have poorer quality of life due to hearing loss or mental issues. The good news is that so far, all of the ultrasounds have come back normal. That means that if he does have some type of syndrome, it's probably not going to affect his health at all. And that's a blessing.

The ENT (ear-nose-throat) specialist also came by today to examine Ashton. He wasn't able to give us much information, as everyone is kind of having to wait to see if he has anything genetically wrong with him before figuring out what to do next, but he was able to let us know that he strongly recommends waiting until Ashton is 3-5 years old before removing the branchial clefts. Depending on how far into his throat they go (which they won't know until they remove them), they might be having to go around important arteries and nerves, and that's pretty difficult when they're so tiny. So at least we know that for a few years, we'll be having to care for them and prevent infections by keeping them clean and such. The ENT will follow-up with him every so often and he'll teach us how to do all that fun stuff. Also, the dermatologist came back today to do a biopsy on the branchial clefts to determine what kind of tissue it is. That will confirm that they are in fact branchial clefts, or let them know if it happens to be something different. And by the way, it was not fun watching them numb him and listening to him cry. But he actually did really well and calmed down really quick afterwards.

So it looks like we're all just anxiously waiting for the genetics results to come back! Everyone's kind of in limbo until we know something, so it will be so nice when we have a definitive answer. Our neonatologist said that he's asked an ophthalmologist (weirdest spelling ever) to come and make sure that everything looks good with Ashton's eyes. Just something else we can hopefully rule out in this genetics puzzle. So Ashton's family now consists of a neonatologist, dermatologist, geneticist, ENT specialist, and now an ophthalmologist! What a great team! Only the best for my sweet little baby :-) And now we sit back and wait (rather impatiently) for tomorrow, when we get the hearing test done! We're praying for good news, but we'll deal with whatever the outcome is. The important thing is that Ashton is here and is doing much better, and that's all that really matters right now.