Sunday, October 2, 2011

Day 37

Today has been about the same. X-ray is still whited out. Breath sounds are gone again. We are no longer having bloody secretions so we think the bleeding has stopped. Flow has been between .500-.580 all day which is about as high as we can get it and his sats are still dropping. Things are just not good right now. I thought they were doing the steroids the same way they did last time (for 3 days) but I was wrong. They gave him a lot more this time so they have to wean him off of the steroids and that process will go through all of this week! His blood pressure has been up constantly from the steroids. He has been on medicine to keep his blood pressure under control but every time he wakes up he turns bright red and raises his blood pressure again. The steroids also have him super cranky and squirmy so he is even more aggravated when he wakes up.

This is all so frustrating. Every time he wakes up mad, he drops his numbers. I can't help feeling like if he is still on the steroids all week, then he won't be able to make progress. Hopefully since it will be smaller amounts it won't affect him as much. I don't want to sit here and watch him so aggravated all week long. I also don't want to watch him all week make no progress. I don't want to get through the week with no improvement and have to have "the talk" with the surgeons. Please pray that he feels better tomorrow and can make some progress. I do not want to get to that point. I want him be strong enough to come off ECMO. I'm just not ready to say goodbye to him. I shouldn't be even writing or thinking these things, I am just so frustrated tonight and want my baby all better. I know 100% that God can do it. Another baby in the NICU passed away today. This is the second time they have closed the NICU due to a death since we have been here. It is so sad and so overwhelming. I just want all of these sweet babies to get better and of course I want Levi to get better more than anything. I am praying that he feels better this week and everything will turn around miraculously.

The NICU was closed for almost the whole first half of the day because a baby passed away. So sad! I hate this for the parents. For those who don't know, our day goes something like this: wake up, get ready, drive to the hospital, eat lunch around 2 while the NICU is closed, go back in when they open at 4, stay there until about 10 when they close. We are pretty much there all day every day and while we hated to have to stay away today, it was kind of a blessing because we took that opportunity to spend more time with Caleb than we have in awhile. We went to the store to look for some fall clothes for him, ate lunch and went to his baseball game. I don't like being away from either of my boys but Michael and I both feel like we need to be there for Levi right now. He is not doing good so we need to be there to talk to him and try to comfort him when he isn't happy.


  1. It is so hard to have older kids while tending to a NICU baby. Our CDHer was the youngest of 4, and I missed the older three so much, but knew that she needed us more. It's a choice parents shouldn't have to make!

    I was surprised to hear that your NICU closes for the night? We were allowed to be there all day with the exception of 6:30-8:30 am/pm for shift change.

    I'm new to your blog and I don't know whether he has been repaired or not. Some hospitals will do the repair while on ECMO and others won't. Praying for your little guy!

  2. Always praying Life for Levi! I was up at 4 a.m. this morning and my first thought was of Levi so I checked the blog from my phone and once again prayed earnestly for God to provide a miracle for your sweet baby. I know that life in the NICU is beyond difficult. Just keep putting one foot in front of the other and take it one day, one hour and one minute at a time.

    Praying always,

  3. Praying for you and Levi! Try to stay positive and turn to those who can help!