Day 36

Levi had a really good first half of the day. When we got there his flow was down a little from the night before, but still up in the 400's. Shortly after we arrived though, his numbers were all looking good and we got his flow down to .280. He got cranky for a few minutes and went back up to .500 but after a little while he got back down to .230. He did well with the lower settings for awhile and then ended up going back up to about .540. When we left he had calmed down a little but was still squirming around. Hopefully, as they get the steroids tapered off and out of his system, he will do better with this. This morning he only had old blood when they sucked him out, but by the afternoon he had lots of bright red blood. They went way down on his heparin and said they would give him some extra platelets to see if that would help. I really hope the bleeding has stopped by the time we get back in the morning. My poor baby. I hate that he is having to go through all of this but I want him to pull through so badly. His x-ray was still completely white today so no air back in his lungs yet. He did have some breath sounds today. He is really swollen still from the circuit change so hopefully he can pee a lot tonight and tomorrow and get rid of all that extra fluid. He does so much better when he gets that off. I think that is all for Levi.

I just need to say that life in the NICU is not fun at all! It stinks! I do not like it! I just want to be able to hold my baby when I want to and nurse him when he wants to. I want to change his diaper on my lap or on my bed or anywhere besides in the NICU. I want to be the one who takes care of my baby all the time and decides when he need diaper rash cream or a bath. It hate sitting there watching nurses take care of him all the time. We do what we can, although that is basically nothing. I think I was just sad standing there while his nurse changed his diaper and cleaned off old diaper cream and put on new. She said something like "that looks much better" and I just hate it. I just hate that I can't have him at home doing all of the normal things that so many people just expect and take advantage of. I probably sound like a big complainer tonight, but it is just frustrating. I know life isn't fair so I hate to even say this, but it simply is not fair that there are people out there who don't care about their children and we have to go through all of this. It is not fair that anyone has to go through the NICU experience and especially not fair for those in the NICU who know that any day could be their baby's last. I know that God's plan is perfect and this is just part of that plan, but it is not fun and I wish we didn't have to go through this.