Day 34

Nate is 1 lb 10.7 oz today! Check out those little cheeks!!!

Nate had a much better day today! He has struggled this week and it has been sad to watch him have bad days. The doctors have been pushing him hard to gain weight and he finally reached his breaking point. His milk feeds have been increased everyday over the past week and a half. They have been paying special attention to his poo to make sure he is absorbing the milk and not just "dumping" it. It is common for babies with only half a small intestine for milk to come straight through without any absorption. Once that starts to happen it is hard to get it back to normal. The past day or two he has started to have very watery poo that looks more like milk than poo so his feeds have been cut back to 7 ml every 3 hours instead of the 11 ml that he was supposed to increase to today. It's a step back but better safe than sorry!

Nate also gets some nutrition through his IV since he isn't at full milk feeds yet. The doctors had been increasing his fluid each day as well to try to finally get this kid to gain some significant weight. He decided he didn't like that either this week. His lungs have started to collect fluid which has made it hard for the poor guy to breath and keep his oxygen levels up. So the doctor cut that back as well today. Hopefully he will continue to gain weight with all of these calorie cuts. 

So I guess that doesn't really sound like he's had a good day but he really has been better! This week Nate has been having a lot more "spells" than he usually has. When he spells either his oxygen levels go down very low, his heart rate goes very low, or he has a combination of both. Until this week, he has had some mild spells where his oxygen goes low and he pulls himself back up with a little extra oxygen. He has now started to include dropping his heart rate as well which scares us every time. He's also needing more help recovering from these new scarier spells. The changes that were made today are to try and reduce these spells. So far they are working! He also got another blood transfusion yesterday which always perks him up a bit. He only had a few scary spells today which makes us feel so much better. 

The best part of the day...I got to snuggle with my boy today! We get to hold Nate once per day as long as he is having a good day. Yesterday I wasn't able to get a turn because he was getting blood transfusions throughout the afternoon and evening and they needed to keep a close eye on him. I got to hold him for 2 hours today though and it was wonderful! He was such a good boy the whole time and only dropped his oxygen levels slightly once or twice and recovered all on his own. We both took a much needed nap and woke up feeling a lot better.