Marathon nap session

Lilly has remained asleep all day, only waking for a few minutes here and there when the nurse was turning her position or changing her dressings. I hope she will just keep sleeping until morning as her daddy isn't much into all night parties.

Even in her state of sleep, Lilly periodically sneaks her fingers under the tape holding her cannula and tries to work it off.

Lilly has set off her alarms off and on this afternoon by desatting. (This means her oxygen saturation levels dropped under 89%.) Not sure if it is surgery related, a bad connection, or she's just being Lilly.

We showed a couple of the nurses here Lilly's video of her laughing that I posted last month. They both really enjoyed it and I like that it makes Lilly more "real", if that makes sense. (Seeing her smiling and interacting instead of just lying in the bed.) As an interesting aside, I heard from a couple parents of children with Trisomy 18 that their children had a laugh like Lilly's. I listened to videos of their children and was amazed! How funny that that extra chromosome can even effect laughter.

There is a man who is often here visiting a patient on this floor. We have noticed that he periodically walks around and pauses outside each patient room, closes his eyes, and prays. We were really touched by this and are grateful. We are learning so much from other people as we go through experiences with Lilly.

"Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commandments." - Deuteronomy 7:9