Wednesday, December 9, 2009


We went to a follow-up cardiology appointment yesterday. Our cardiologist is wonderful! She (and our pediatrician) both agree that the cause of the pulmonary edema is probably not Lydia's heart. She said the VSD looks far too small to be causing the kind of build up in her lungs that we're seeing. Dr. M (cardiologist) also said that there is pressure in her lungs. SO - we're at yet another impasse. We are no longer sure what is causing the pulmonary edema and so it will be difficult to figure out how to prevent it. She's a tricky little girl - she never does what we expect. The edema could be caused by a back-up in her liver, so we're going to do some blood tests for that. Lydia is tough to get blood from and we need a good amount. Please pray that whoever takes her blood would be able to get enough without having to stick her too many times.


Lydia has started to have the seizures where she stops breathing again. Because of the pulmonary edema, when she does start to breathe again, it takes a while for her oxygen levels to come back up. Last night she stopped breathing four or five times. It's obvious she's just having a really hard time. But, she's come through bad times like these before and we trust that He'll bring her through them again.


So hey, you know what's hard? Having a sick baby during the holidays! Everything is a celebration and sorrow at the same time. We're trying really hard to focus on the celebration. Lydia and I have been singing Christmas songs and reading Christmas books and watching Christmas movies together. Would you please pray for strength and joy in the weeks to come?


Here are some pictures from the past couple of days.

Here she is in the PICU at Yale. We bring her giraffe with us wherever she's going to be sleeping, since she's had it almost every night since she was born.

This beautiful sweater was made by my friend Ellen.
You can see more of her craftiness and read about her journeys in Africa on her blog:

Look at the elephant buttons!

Still sleepy after a long weekend.

1 comment:

  1. I am praying for you! You have no idea how much I pray for you. My heart is with you always.