Saturday, October 1, 2011

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.


  1. Hi there. My name is Evelyn and I too had a cdh baby. I can't sit here and tell u I know how it feels to see my baby in NICU because he was a stillborn. My prayers will be with Levi and your family. With the help of our lord almighty he is going to pull through. You are a very strong person and a believer in christ. Wish that could comfort you with my words keep the faith and I will be praying xoxo

  2. You're absolutely right. Life in the NICU is very very very difficult. I know well all those longings you write about. The desire to hold that baby you've never held is so incredibly strong. As Levi gets better and stronger you'll be able to do more and more of those little things like diaper changes and they will all mean so much to you. I'll never forget the first time we gave Clara a bath (two months old!). You're right that life is not fair, but that sure doesn't make it any easier. Let us know if you need to talk to someone who has been in your shoes.

    We prayed so hard for pee! We'll be praying for Levi to pee pee pee so he can get that fluid off and start getting stronger!

    Mom to CDH and ECMO survivor, Clara (3.23.11)

  3. Hi! My heart breaks for you! I too am a nicu mommy. My twins were born 10 weeks early and spent 7 weeks in the nicu. My Sons name is Levi! I feel connected to your Levi! I pray for you all often and I hope things get better!

    You are right the nicu is a very hard place to be. It downright sucks! My advice is to try your hardest to fight for little Levi. Ask lots of questions and demand to be part of your child's care. Also try to connect with other mommies going through this because not many people understand the nicu craziness!

    I will continue to pray for levi's complete recovery!

  4. You a doing a great job of taking care of Levi and giving him exactly what he needs. He knows his mommy is there and loving him. Keep talking, singing, reading and touching him. He will respond to your nurturing.

    Hang in there.