Monday, October 8: Three Days Old

Today Ashton is three days old. It's crazy to think it's only been three days since he was born. So much has happened and we've been physically and emotionally exhausted, so the days have just blended together into one big mess. It's hard to keep track of everything and try to remember which doctor said what and what they think is going on now--it's pretty tiring!

Today the dermatologist came by to look at the red sore on his head. She is pretty sure it's a nevus sebaceous, which is defined as being a congenital, hairless plaque that typically occurs on the face or scalp (thanks, Wikipedia). Kirk's brother was actually born with a smaller one on his head, and his hair around it just covered it as he got older. It's something we can definitely have removed later on, and it usually doesn't develop into anything serious. However, the doctors are a little concerned about it just because of the fact that Ashton also has branchial clefts, a patch of white hair on his head, a possibly underdeveloped jaw, and a slightly abnormal ear. All of these together may point to some syndrome, but they aren't sure what. And there's a chance that they could all be independent of each other. The jaw may actually be fine and he may just be really small and hasn't grown into it yet; the nevus sebaceous could be hereditary, as could the patch of white hair; and the branchial clefts could have just been a random mutated gene. But doctors like to connect things and have an actual diagnosis, so they are just trying to rule out anything that could lead to potential problems in the future--and that's great that they're being thorough. It just makes it a bit more stressful to us as we have to listen to all of these scary disorders and syndromes that Ashton could have. We just want to know what, if anything, is wrong with him so that we can deal with it and figure out where to go from there. Not knowing is definitely the worst.

They also did an ultrasound of his kidneys today to make sure everything was ok there. Kidney problems have been associated with syndromes that include branchial clefts, so they wanted to make sure there was nothing abnormal there. Everything looked good, which is awesome since now we can start ruling certain things out. We have this huge puzzle, and every piece helps us figure out how to put it together!

Ashton is continuing to be weaned off his respiratory support, and he's getting stronger and more active every day. He'll probably have a hearing test on Wednesday, which is something we're very anxious to have done since we aren't quite sure whether he responds to noises or not, and hearing issues are often associated with branchial clefts. So we're very anxious to get that test done so that we can hopefully cross that off the list! We appreciate everyone's support and ask that you continue to include our sweet Ashton in your prayers!