23 Days In

Well, a lot has transpired since my last post.

Things were going so well, and we were up over halfway to our goal feed amount.  Our supplies for home had been ordered, and people were discussing carseat options.  THEN, I started noticing that Gavin was a little more drooly than I had noticed before.  Then he started having trouble eating because he seemed congested.  Surgery was determined that it was the food increases, I thought it was the NG tube bothering him.  Eventually things got really bad and the medical team tested him for some respiratory infections.  Turns out the little guy has rhinovirus, which is a virus that causes a super baby cold.  It has been a slowwwww crawl ever since.  Right now I am sitting here in the NICU watching the little guy cough on high flow oxygen.  This is an improvement, as last Friday he was intubated.  That day will go down as one of my least favorite days ever.  He was extubated yesterday, but he sure has a lot of phlegm that he is coughing up, and that phlegm is making him work a little hard.  We are now at 5 cc's an hour through his NG, but that is a longggg way off from what his goal will be.

His omphalocele is doing great.  Surgery is very happy with where it is at in terms of thickening.  He was born with a pretty thin membrane that was totally transparent.  Now you can't even see through it.  His attending said that they will probably be comfortable being a little more aggressive on his food increases since the membrane is so thick now, but he has to get rid of this virus first.  When that will happen is anybody's guess. I have to say the virus has been more of a low point for us than the omphalocele.  He has spent over twice the amount of time in the NICU from the virus as opposed to the ompahlocele!

We have heard that the omphalocele journey is a roller coaster, and this has been true for us.  We went from hard charging home, to hard charging many steps backwards.  Hopefully he will be over this soon and we can work on getting him home again!