Chatty Lilly at the hospital

I woke up a little before 5:00 a.m. this morning to the sound of Lilly talking. A nurse was with her and apparently trying to soothe her as Lilly was very restless. I got up and managed to hold her, with all her tubes and oxygen. Oh it was wonderful! And Lilly liked it too - she calmed down quickly. Poor baby - she had gone so long without being held. She wasn't used to that. So I sat carefully in the chair by her bed holding her and just enjoying the feeling of her skin. She was happy and started talking to me. That was great because yesterday she didn't make a sound. I could also see that her coloring was pretty much back to normal.

When her daddy got up she sat with him and he read the Bible to her. She had lots of comments (amens?) to make. She got especially worked up over Psalm 9:10 which says "And those who know Your name will put their trust in You; for You, LORD, have not forsaken those who seek You."

Lilly had a chest x-ray and echo this morning. She still has fluid on her heart and it is still enlarged. Her fever dropped from 102 degrees to 100.5. The doctor believes that she has a virus. (We don't know what - but it's not RSV.) Because her body is fighting off the virus so hard, her heart had to work too hard. The oxygen (C-Papp) is helping her. But she is still incredibly weak. The doctor today said that even if she regains her strength and gets the VSD repair heart surgery, that she could still die of heart failure. This was the first time I heard this. This dr. is NOT a cardiologist. Her cardiologist in Florida said that the VSD repair would mean that she wouldn't die of heart failure. So not sure what's going on with that.

Lilly is still on an anti-napping strike. In fact, she talked almost ALL day other than one or two catnaps. My husband started wondering if she has the strength to cry since she hasn't. I can't stand thinking about it that way - I told him maybe the oxygen was making her feel well enough she didn't need to. He made this comment right after the nurse inserted a new NG tube and Lilly didn't have much of a reaction. She started milk again this evening, and soon fell asleep after that. Maybe hunger was keeping her awake.

Maybe maybe maybe. All these maybes are a bit frustrating. I like things to be black and white.

Lilly had a bit of trouble breathing this evening. They had to turn her oxygen up higher and she was agitated. It was a bit frightening. She's sleeping now though, and seems to have leveled off.

Lilly picked up some more prayers today. The hospital chaplain prayed over her twice. Two couples I never met (who know of the blog and Lilly from a prayer group) showed up and prayed with me. The Mr. & Mrs. G. from church came and prayed and bought my husband dinner. (As a nursing mom, I get meals brought to me.) Then Mrs. B. came by and brought a bag with food. Yum - I'm thankful because my dinner didn't stick with me. :P

I'm not sure what's going to happen next. We are praying that Lilly will come home with us very quickly. But ... if her numbered days are coming to an end, I am begging God not to let her suffer. Whatever happens, it will be to His glory. But I still want to keep her longer! Much much longer ...