Hospital details

My husband and I are at the hospital with Lilly right now. I'm very tired and today was a bit of a blur but I want to write down basically what happened before I forget anything.

I woke up this morning about 4:30 and thought that Lilly's breathing sounded a bit weird. Sort of gasping in some parts and I could hear some clicking. I picked her up and it stopped. When it started again I took her downstairs and boiled water and we sat under a blanket with it. The steam seemed to help some but I thought she still didn't sound right and her coloring didn't look right.

I called her pediatrician and we went to the closest hospital. They put Lilly on oxygen and that helped quickly. The doctor was asking me about her and seemed stuck on the fact that she is almost 7 months old and has Trisomy 18. He finally asked if anyone had told us the prognosis of the disorder. How fun to blow the mind of medical people. A chest x-ray revealed a lot of fluid on the heart and lungs, and that her heart was enlarged. We were told Lilly was dying. (I am very grateful to Dr. and Mrs. S. for coming to the hospital and praying for Lilly with me.) Lilly was given a dose of Lasix.

It was decided that Lilly needed to be transferred to another hospital that had a pediatric intensive care unit. So Lilly and I got to ride in an ambulance. (I suppose it would have been more exciting had it be under better circumstances.) A group of doctors and nurses quickly assessed her and she was made comfortable in the little bed.

Lilly had an echocardiogram to check her heart. It verified the enlarged heart and lots of fluid on it. The doctor said that they didn't know why her heart suddenly has started failing like this. (Doesn't sound like it's caused by the VSD.) But that they would do another chest x-ray and echo in the morning to see if the medicines are helping get that fluid off the heart. If not, she said we would have "a different conversation." I asked if she had the VSD surgery quickly if that would help. The doctor said that she would not survive the surgery right now. The anesthesia would kill her.

I hate this. I'm just not ready to lose Lilly. But I admit that I don't think I ever will be. I just want so badly for her to beat all those odds and live to be one year old. (Of course I know I'll want her to live longer than that once we get there.) Please God - let her live to your glory!

"But you, LORD, do not be far from me, You are my strength; come quickly to help me." - Psalm 22:19

On a good note, Lilly looks fantastic compared to what she did this morning. (She looked ghastly then.) Her color is back in her cheeks, her eyes are opened wide, and she's making occasional little sounds. She doesn't have any socks on to kick off, so she's being "sneaky Lilly" and kicking off the blanket. She's able to track my voice with her eyes if I move away from her. We so badly want to hold her but she has this enormous oxygen contraption wrapped around her head.

We had a strange and amazing thing happen at the first hospital. Not related to Lilly but to our son. One of the doctors who worked on Lilly became extremely touched when he saw my husband bring our son and older daughter into the room. He asked me hold old my son was and said he had one the same age. He complimented my sons manners. I noticed he was watching him when he interacted with me and Lilly a little. Then he came into the room and handed my husband a big wad of cash. He said something like "I was going to go out and do something I shouldn't after work today. But instead I'm going home to my son. When you came in with the baby it didn't really hit me until your son came in. Please take the money." Wow. God really can punctuate the bad with beautiful things!

"For He has not despised or scorned the suffering of the afflicted one; He has not hidden His face from him but has listened to his cry for help." - Psalm 22:24

Please please be praying the tests tomorrow will show the fluid has greatly gone down.

"Dear Lord please hear the prayers of your people and answer us."