...I'm gonna let it shine!
This little light of mine
I'm gonna let it shine
Let it shine, let it shine
Let it shine!
I have some wonderful friends. And when my dear, extra-wonderful friend LJ learned that the little sleep rooms are so dark I'd been using my cell phone to find what direction is up, she bought me a tiny little nightlight. It's small enough that it can fit in beside my toothbrush, so it goes back and forth with me every night. That little blue glow is just enough so that when I wake up at night, I can remember where I am. And every time I see it, I smile and give thanks for my friends who are worried about me.
These rooms we're using at the hospital are essentially closets just wide enough for a single bed. Some of them have a little chair or a little nightstand, and the one we had last night has a little sink and a window that overlooks the ER waiting room. Oooh, the luxury suite! While I jokingly complain about the tiny beds with little hard pillows, I really am so grateful to have a place to stay here. Our sleep rooms are right around the corner from the CICU, so if anything happens during the night, we can be there in an instant. Here's a visual - please note the way we turned the pillows!
When Jay is off ECMO and therefore more awake/alert, we will want one of us here in his room at all times. But for now, we're happy to be close enough to run here, but far enough away to avoid the incessant beeps and alarms and get a little bit of sleep. We're requesting a room at the Ronald McDonald House, but it's a day-to-day question whether there will be space there.
Jay is still steady today and they are prepping him for the big test later this morning. There's still discussion of taking him off today or tomorrow, and the results of this test will help guide that decision. They initially told us that 7 days was the "magic" number, and today is day 7. He's tolerating ECMO very well, but we want to get him off before he begins having problems with it.
The CICU is currently a bit of a war zone, and we don't want Jay to have any problems when docs are distracted with lots of other problems. Two other kids went on ECMO yesterday, and it's pretty chaotic. So as much as you're praying for us, there are lots of other tiny babies who need your love and prayers today too.