James is 6 weeks!

James is 6 weeks old! Going on 7 as I'm slow to post...

Working with the OT

On August 25, his official 6 week birthday, he weighed 5 lbs 7 oz and was up to 45 ml per feeding every three hours. (Three days later up to 50 ml per feeding and nearly 6 lbs!). He's taking formula thickened with rice cereal by bottle because they're worried he's drinking too much too fast and possibly aspirating (going in his lungs) or that the milk is going up into his nose and causing him to stress out. Still getting breast milk via his NG feeding tube when we don't try the bottle.

Thrilled to be working with PT

Wide awake after diaper change

Per my request, we tried regular thin breast milk by bottle the other day and after initially doing well he had a brady episode. This also happened once last week when we tried breastfeeding. Frustrating for us as he was taking thin milk in Wausau but our speech therapists here say that's common for babies that are started with feeding too soon; they initially may do well giving parents false hope and then kinda poop out and their abilities really drop before maturing and being able to feed well. Their theory here in Chicago is "quality feeding vs. quantity," they would rather he take smaller amounts by bottle but with good technique as opposed to before we were just looking for quantity. Makes sense in theory but the goal to get home is to take full bottle feedings so quantity is the ultimate goal. Essentially what we do is pace James with feedings; we give him three sucks by bottle and then give him a 5-6 second breathing/swallowing break by tilting the bottle down. It takes a lot of patience but we've been told by the speech therapists we are both very patient with him and do well. Thumbs up mom and dad!

James is officially off the flow, or vapotherm machine, as of August 18th. They decided to give it a try and came to take it off and James had already pulled it off himself. I guess he felt it was time too! Strong little man also regularly pulls out his NG tube. He had a good couple of days afterwards and then started to have some more desaturations and brady episodes which we fully expected as had been the trend anytime the flow was taken off before. Their theory was to give him the benefit of the doubt and see if he'd work through it and he definitely has. Fingers crossed but I think the vapotherm machine is officially history.

This next week we're anticipating a swallow study to determine what's really going on with James' feeding difficulties. This brought me to tears because I feel like, depending on the results, we're still looking like we're weeks away from discharge depending on what they see and what they decide to do. We're fast approaching my due date, September 11, and still have no timeline on a discharge for him. Adam has long been able to accept that we cannot put any dates in our head or really any great expectations regarding discharge, but I thought for sure he would come home by his due date.  It's not looking like that will happen so I'm trying hard to have no expectations. Weeks ago in Wausau I remember being told he likely wouldn't be home until this time and that made me absolutely break down. Now we're adding to that and don't even have a possible date in mind. Funny how you can just become numb to things and the hospital and NICU are just our new normal.

So big! 

Favorite picture. First time wearing socks.

This boy is so loved.