Our home away from home

Lilly and I are back at the PICU and will be here for at least one night. I say "back at" - we're at a different hospital than we were earlier in the week for the scope and g-tube surgery. (We were at this one this past February when Lilly had a virus.) This hospital is closer to our home and well, if I'm going to stay in a hospital, I admit I like this one a whole lot better. The care is just as good at both places, but here it is much more comfortable for the parents. Any readers that have spent much time in hospitals will understand how impressive this place is when I say it there is a bathroom - with a shower! - in the room, a couch that turns into a bed (not super comfy but it sure beats a chair), and internet access on the room TV. Oh - and a nice big window with decent view.

But I digress in my weariness. Lilly is stable right now. Her heartrate is much more normal (it was close to 200 bpm early this morning) and she's breathing great with a little high flow oxygen. She is sleeping a lot. But wakes up every 30 minutes or so and fusses. When she does I roll her to her other side and calm her and then she'll go back to sleep. She's gotten mad a couple times at the doctors poking and prodding and stays worked up for awhile.

They've run tests and done a chest x-ray but haven't really found anything. Right now they're thinking it's just a cold. ("Just a cold" - that can be so very difficult for a Trisomy 18 child.) Lilly's chest is "crackly" sounding but praise God her lungs sound good and not "wet." So we're waiting, praying, and will just see how she does.

The nurses remembered "Miss Fiesty" from our previous stay and flocked into the room to see us. They were quite tickled with the amount of "chunk" Lilly has put on since February.

Our whole family came with Lilly to the emergency room this morning. My husband finally took the kids home mid-afternoon. I was so glad they could be with us. After everyone left it felt so quiet as Lilly and I were left alone in the emergency room waiting for a bed to be ready for her in PICU. One scripture brought me a lot of comfort though - it's how King David describes what sounds to me like a hug from God:

"You hem me in -- behind and before; you have laid your hand upon me." - Psalm 139:5

Though coming here today was NOT my original plan for my day, God knew about it before Lilly or I were ever born:

"All the days ordained for me were written in your book before one of them came to be." - Psalm 139

Thank you everyone for your faithful prayers for Lilly. They are her lifeline!