March 26 Update: Happy 2 Months!

Weight: 2650 g (5 lbs 13.5 oz)

Yesterday, Matthew pulled off the tape that held his feeding tube in place and gave himself a nice sore on his cheek. Poor kiddo. I guess he’s over the NICU and ready to come home 😆. That makes two of us. 😩 While we still love everyone who works there❤️🥰

One of the nurse practitioners came in tonight to give an update, and she was so nice and spent some time giving us a better picture of where Matthew is at (Thank you for your time, Connie 😊).

He is making some progress with bottle/breast feeding (he drank 35 ml the other night from a bottle 🙌), but it’s not very consistent. She said the problem is that he just doesn’t have the stamina…because of his low muscle tone (caused by Trisomy 21) and his “lung disease”. I was surprised to hear her call it lung disease. The doctor the other night said the same thing, so I asked her to explain.

I definitely don’t remember all the terminology and the whole explanation, but here is the gist…at least what I understood.

Matthew’s lungs needs a little extra help, which is why he is receiving oxygen therapy. The oxygen that he receives gives his lungs the pressure it needs but it also causes a bit of inflammation. It is not something that he should grow out of and will not cause any long term problems for him, but paired with his already low muscle tone, it causes him to get tuckered out easily and that’s when he also starts breathing faster to try to get more air.

So basically, he has the desire and even the ability, just not the stamina, to eat how often and how much he needs to.

So, that’s really the only thing keeping him from being able to come home at this point. They will give him a few weeks past his due date and then maybe talk about him coming home with a feeding tube depending on how we feel about that.

So it looks like our goal for Easter isn’t super likely, but you never know with this kid. 🥰