Updates for today...not really any. The flow on the machine is up to .650. That is the highest it has ever been. We need it to get to .200 so that is not good. Levi has been very squirmy and aggravated and has been setting his pump off. That is not good, we do not need pump problems. (That is ECMO pump, by the way)
It feels like we just sit in the NICU every day for hours waiting on something good to happen. It gets frustrating. I think I had several days where I didn't get very emotional and I didn't cry (or at least had minimal crying) and that has caught up with me because today I was even more emotional than yesterday. Today was filled with tears. I DO have faith, that isn't the problem. I don't know why I have been so emotional. I think it is a combination of just giving birth and my hormones being crazy and the lack of progress being so discouraging that it just takes a toll.
I think I was ok until about 4:00. I was sitting in the NICU just crying listening to the guy nurse explain some things and then it was time to pump. I spend so much time in that lactation room downstairs, I feel like I live there. Anyway, I went downstairs. I was glad that it was time too because I needed to get away for a few minutes. Most of the time there are between 2-5 moms in there but it was just me this time. I sat there crying for like 20 minutes. When I was trying to pull it together another pumping mom walked in. She is a nurse that works at the hospital so I see her pretty often down there. She asked me if I was ok and I never know what to say to that. I talked to her for a few minutes while I finished pumping and then went back upstairs. This whole day was weird. It went by so fast. I never want to leave at the end of the night.
This may sound to some people like I have lost hope, but I can assure you I haven't. There are some things that are always in the back of my mind, though. I am always pushing away any "what if" thoughts that creep in. But I can't help but think that this is all too much. This is too much for us and way too much for Caleb. We just can't lose our little Levi. I look at him and he is just perfect. I love him so much. Poor Caleb has been so excited about having a little brother. We waited to tell him about Levi until I was 14 weeks because of the previous miscarriages. All he has talked about for so long now is Levi. I cannot imagine never bringing him home and Caleb not having his brother here with us. That is too much. I cannot imagine an empty nursery forever; that is too much. I just feel like he has to pull through and he has to come home with us. How could he not? I have honestly felt 100% that it is God's plan for Levi to live here with us, for him to be a miracle baby. Every day gets harder and harder. I see my sweet little one's eyes staring into mine and I can't believe that it is a machine that is keeping him here. We just can't lose him, we have never gotten to hold him or hear him cry. I have never gotten to nurse him or stay up all night with him. He has to make it. I just need God to work on him. ALL our hope is in HIM. This is all so much harder than I thought it would be. It was hard to be pregnant and know that this all was coming, but it was easier to be hopeful then. It is harder to stay hopeful as each day passes but I do not have any doubt about my God's sovereignty. All I have left is hope in God though and I think that is all that gets me through each day.
It has been a rough day and this post is probably all over the place and very random because I can't get my thoughts straight so I apologize for the rambling. I think the most important thing is please everyone keep praying. Please, keep believing that He can and will heal Levi. Please do not doubt that there is still hope for Levi. We need to all believe and we need to all keep praying and praising God for sweet Levi.