Wanted to give you all an update on today. I also wanted to just add a note that as you read this blog, remember that this journey will have times where it is two steps forward, one step back, etc, for quite a while. Totally normal for a NICU babe! Don’t let it discourage you!
I went up to see Joey with my mom and sister earlier today. He is still just content as can be with that stupid tube out of his mouth :). He can even take a pacifier now! While I was in there with my mom we were talking. If she was talking, he laid there content, but the moment I opened my mouth and started talking, he opened his eyes to look for me. I would stop and he would close them, start again and he would look for me. This is the first time he’s done anything like this (last night was actually he first time I had ever seen a peek of his eyes!), and it was such an amazing thing for me to see. He knows I am his mama. This boy made me a mama. I’m speechless. Then while I was in with my sister I had my hand resting on his back while we were in there. He was so peaceful, just snoozin’. We got up to leave and I removed my hand. He started crying. Once again, he knows his mama, and needed my touch. Man, I love this kid. At one point while with my mom, we could swear he smiled, though its hard to tell by the picture. I’ll take it, though. 🙂
I was able to talk to his doctor while we were there. There are 8 NICU doctors who rotate between 5 hospitals, so this is the third he has had so far. They are all amazing. She let me know they did a head ultrasound yesterday. This is standard for any baby born before 32 weeks. They are looking for 3 things:
– any bleeding in the brain
– they measure the echoes (ultrasound is just sound, so basically they are measuring how it bounces back) all around the outside of the brain
– measure the organs (this was her words, but I was unaware there were organs inside the brain!) in the brain
He does not have any bleeding in his brain which is a great thing. His echoes are a little higher than they would like them to be. One of the organs in the brain is called the choroid, that is where spinal fluid is produced. She thinks he has a little bleed in one of them (there are 2 in everyone’s brain). The radiologist didn’t even pick up the bleed, but she caught it when going back over the scan. Neither of these things are major, or something to worry about now, and both are simply due to being premature and are likely to clear up on their own. He will have this scan repeated next Monday to see if there has been any change. She said staying the same or getting better are both good things, we just don’t want either issue to get worse. But we’ll discuss all of that more if that is something we’re dealing with.
He was off the bulirubin light when we saw him last jight. His jaundice levels are back up a little today, you can really see the yellow in his skin. He may go back under the lights tomorrow, but this is all still very normal. He just likes to get his tan on!
When we went in tonight, they had removed his umbilical line (yay!!!) and had no issues with it coming out. He does have to lay on his back for about 6 hours so they can make sure it doesn’t bleed. This is a huge, huge step towards getting to hold him. If he behaves tomorrow, it might be the day!! He doesn’t like being on his back much, so he was a little grumpier tonight, but still quite content to listen to us talk to him. I love watching the way he calms when he feels Andy’s big strong hand. They changed his diaper, his bedding, and weighed him while we were there. I had never seen him with his diaper off! His little butt is unbelievably tiny and cute. Andy got to hold him up while they changed his bedding!! He weighs 1630 grams, just a little over 3lb9oz. He’s lost 10 grams side yesterday (totally normal!). He still loves to hold things in his hands, tonight he was hanging on to the cpap machine. So sweet.
Remember my amazing nurse the night he was born, Chanell? I still get to see her around the hospital when I’m in 🙂 she goes in and checks on Joey frequently, and I absolutely love that. Tonight she came in with me and scrubbed in so she could touch him, and then he was getting his diaper changed and she wasn’t able to again. He’s her little buddy and I hope she gets to touch him soon! I just can’t say enough about the amazing people at this hospital.
Tonight Joey’s NICU nurse from the night he was born was in there with us, and she said “he has come so far!” It was very cool to hear her perspective – she saw the condition he came out in and the circumstances he came out in, and she’s been able to watch all the progress he’s made. For her to be able to say 6 days later he’s come far means a lot.
I’ll leave you with a couple more pictures, just for fun. 🙂