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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Saturday, February 5, 2011

Release !!!???

Weight check = 8.3 lbs. (slight drop but we expected it)

On the white board in Lilly's room, the nurse wrote the plan for today as:

- keep oxygen off
- feed
- plan going home party

Yay! We are rejoicing. The doctor is monitoring Lilly's breathing (she's off the oxygen) and said if it stays good that we could plan to go home today. So far Lilly is doing great this morning. She's not a wet noodle anymore - she's moving around well and just being normal Lilly. One week ago today it didn't look like she was going to make it and yet here she is. The little Trisomy 18 baby that just "keeps on ticking." Thank you God.

Years ago I visited San Francisco. My favorite part was a tour of Alcatraz. I just keep thinking "escape from Alcatraz!" We're breaking out today!! Seriously though, being in this room for a week did make me reflect a lot on what it must be like to be a prisoner. It's amazing how the human body can adjust to things though. On Tuesday I thought I'd jump out of my skin. But by yesterday, I had my daily routine so down that I was almost dismayed when I realized it was dinnertime. I still had things I wanted to do!

Yesterday was the day that Dr. H said that if Lilly came off the oxygen and did well then we should be going home Saturday (today). Even though I knew this was not a guarantee I was filled with so much HOPE. That hope completely changed how I felt. Having an idea of when something stressful is coming to an end, and having that hope, is transforming. I'm sure every prisoner could tell you when their upcoming release date is. This reflection also led me to think about how I used to feel, when I had no hope in Christ, and that life had no point. You live it and then all you had coming was death. Where is the hope in that? There is none. It's empty.

"Martha said to Him, 'I know that he [her dead brother Lazarus] will rise again in the resurrection at the last day.' Jesus said to her, 'I am the resurrection and the life. He who believes in Me, though he may die, he shall live.'" - John 11:24-25

When a couple of the nurses here found out I inserted a new NG tube into Lilly each week, they asked if I was interested in becoming a nurse. NO! I realize all the more that that is not my bent. It has been really interesting interacting with the different nurses here and observing their personalities. Some come in and immediately take charge and want to change things. Others follow the program. Some are quite personable. All have done an excellent job taking care of Lilly. I enjoyed my conversations with one of the night nurses - she is into cloth diapering and making homemade baby food too. Then we had a really kind day nurse with whom I enjoyed discussing children with. She even quietly confided that she believed in the power of prayer. It had saved her mama from dying.

I do feel like I am leaving here better knowing how to take care of Lilly. Though I have two other children, I often feel like with Lilly I'm "starting from scratch." One nurse here used to work at another hospital and told me that there was a little boy with Trisomy 18 who was in and out a couple times a year with something or another. That seems to be the case with a lot of the Trisomy 18 children who's blogs I look at. And I suppose it may be that way with Lilly.

"These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world." - John 16:33


  1. You said this of one of your nurses:
    "She even quietly confided that she believed in the power of prayer. It had saved her mama from dying."

    How sad that she felt she had to QUIETLY tell you that. We should be shouting that kind of news from the roof tops. What is the Devil doing to our country where we feel disusing God at our workplace could get us in trouble and has some places.

    We shall Shout this good news and give God the Glory. Absolutely prayers got our Lilly through this tribulation.

    Go home, Lilly, and sneak your socks off!

  2. Home never sounded so good! :)

  3. You have such a great perspective. We are praying for Lilly and rejoicing that she is still here with you to love and cherish. The Lord is using that little tiny girl for His glory! Amen!

    The W-H's

  4. You're bustin' out of there, Lilly!