Friday, August 19, 2011

Skinny Boy?

Cohen is still moving along, although I guess he isn't growing as fast as the Drs want him to. They have a growth chart they have been keeping track of his progress on and while he is growing, he has kind of leveled off. So, they have increased the amount of fluid he is getting in a day by a little bit. They still don't want to give him too much fluid because of his lungs, he is still on his diuretics to help get rid of any extra fluid. The Drs want him to pick up his growth in hopes that he will continue to outgrow some of his lung problems which would help his heart, which would make him require less oxygen which would help his eyes. Everything that is done is somehow connected to another of his problems. Which can be good, but is also why they have to be so careful with everything.

Cohen also had an echo on Wednesday to check on his heart. Because his lungs are still sick (and probably will be for awhile), his heart has to work harder to get blood to them. When they looked at his heart, they said he does have a little bit of enlargement in his right ventricle, the side that pumps blood to the lungs. For now they are trying to keep tighter control of his O2 sats. Before, his alarms would go off when his sats got down to 83% and now they want to keep him between 90-95%. Because of his eyes, his ROP, they can't just turn the oxygen way up because it can make his eyes worse. But, the treatment for his enlarged heart is oxygen. So, it's kind of this catch 22 as they try and find the right balance to help his heart and lungs while not damaging his eyes. His PDA looks the same, still moderate in size, but continues to not seem to be a bother to him. He will have another echo in a month to check his heart again.

I had my first therapy appointment yesterday in Bellingham. She probably thinks I am a wreck (which I am) because I was already crying when I first met her. I had driven to Bham and when I got there all the parking around was pay parking. I had no money, no change, only my credit card, which the low-tech pay meters didn't take. So as I drove around and around trying to find somewhere to park I was getting frustrated. Finally, I found a parking garage and parked. Then I couldn't find the building that the therapist's office was in. I tried to call a few people to see if they could help me but no one was answering their phones. I tried calling the office and all I could get was an answering machine. By then I was sitting on a bench on the sidewalk crying. I decided to try walking up the street one more time to see if I could find it and I finally did, half an hour late. I have begin to notice that I really have no emotional reserves. Things that should be small, like not finding parking, become big things that I have a hard time dealing with. So, if you see me wandering the streets crying...please come save me!

Danny and I have talked about how sometimes we just feel numb. We don't know how to deal with everything we have going on. We don't know how to act or feel or what to say sometimes. We have felt so many emotions in the last 3+ months with the difficult pregnancy, wondering if we would lose both of our babies, and eventually losing one and having the other be critically ill. I think that there were quite a few times where Cohen was really, really sick and we didn't quite realize it. We knew he was sick and that things weren't great, but I don't think we knew how sick he was. I think we just couldn't process it. Now, looking back, we see how far he has come and how much God has had his hands on Cohen the entire time. Carrying him when we weren't able to.

Please continue to pray for our hearts emotionally and Cohen's heart physically. Also, pray that he will begin to pick up in his growth.

{These pictures are from the last few days/weeks. My camera disk is full and I haven't quite gotten around to clearing it off. So you will have to settle for these.}


  1. I'm constantly thinking and praying for you guys. Thank you for all the updates and your honesty. Cohen is so precious!!

  2. I know he's all long like Danny, but he has such a Rinehart face, it's uncanny.

    Dear Jesus, please protect, comfort and give STRENGTH to all of the Kimmel/Rinehart hearts. AMEN!