Happy 4th of July! I am spending my first night alone here in Seattle. We went up to Lynden yesterday for a BBQ at my sister Karen's house. That was kind of my first time being around more than just one person at a time other than my family. It wasn't too bad because I didn't know a lot of the people but I got to be exposed to a little crowd without actually having to participate too much. We were going to go back to watch the fireworks but we were both just too tired. It was really nice to stay in my own bed, but still really hard to leave Cohen. Today Dad and Danny brought me down and stayed for most of the day to visit Cohen and then went home because they both work tomorrow.
Today was kind of a rough day for me. It was one of those "one minute at a time" days. Cohen has hit the point where he's not getting any better. Yesterday they switched out his breathing tube because the air leak was quite significant so they took out the one he had and put in a bigger one. However, they didn't get the results that they were hoping for and he was switched back to the oscillating shaker ventilator again today. His lungs were collapsed quite a bit and they really want to open them up so that he can breathe better and make a little more progress. His blood gases today haven't been great, but they are starting to get a little better. I called his nurse this evening and she said he was fighting the ventilator so they ended up having to sedate him :( He will have another echo tomorrow to check on his PDA. At this point, there isn't much they can do to fix it if it is causing problems. He has a new attending Dr this week so the plans always change a little when he gets a new doctor. This doctor doesn't feel like the risks of giving him the medicine to close his PDA outweigh the benefits. She said his kidneys are getting better but she doesn't want to cause more damage giving him a medication that most likely won't work. And, they still won't do surgery until his rash is completely gone. It's definitely getting better, but not gone yet. The idea of steroids is still being tossed around because he has a lot of inflammation and fluid in his lungs and those would help settle that down.
The one good piece of news that we got today was that the doctor said Cohen was handling his feeds like a rockstar. Most preemie babies have some sort of issues with their feeds but our boy likes his food! We were told that he can actually outgrow a lot of his problems like his lungs and his PDA so they are really trying to make sure he is gaining weight. He is getting breastmilk mixed with some powder to give him extra calories and protein. Right now he is getting 4.9 mL per hour and today he weighs 1 lb and 14 oz! His doctor was explaining to us today that as he continues to grow, the PDA stays the same size or even gets smaller and then doesn't cause as many problems. I guess in my mind I was thinking that the PDA kind of grew with him but I hadn't thought about him outgrowing it, so this is a little bit of good news I guess.
I read this the other day and it of course the timing of it was right on. This is from my "Jesus Calling" book..."Discipline your thoughts to trust me as I work my ways in your life. Pray about everything; then, leave outcomes up to Me. Do not fear my will, for through it I accomplish what is best for you."
This is something that I have been struggling with lately...being afraid of God's will for us. I know he doesn't want bad things to happen, but he allows them to. It's part of living in a world of sin that bad things happen. Losing Carter was the hardest thing that has ever happened to us and there is this fear in the back of my mind that we could lose Cohen too. I know people will say "dont think about that", and while I try not to dwell on it, I think it would be impossible for it not to at least cross our minds. Cohen is a sick baby and we continually pray for many miracles in his life. He has come a long way and it is only by the grace of God that he has come as far as he has. But, the thought of losing him still terrifies me. I am trying to trust in the plans of the Lord and take it one day at a time.