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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

Friday, November 4, 2011

Off the vent!

Lilly started bleeding this afternoon but they quickly got that under control. An hour and a half after we got word about that we were still waiting to see her and I was getting nervous. But then her anesthesiologist came in and said that it took longer because they got Lilly off the vent! We were so excited!

We finally got to see her about 5:20. She is on oxygen (60%) and a pace maker. They may start weaning off the pace maker tomorrow and see how that goes.

We were so happy to finally see Lilly and touch her little hands! She was awake and looking around.

But when she saw me her face crumpled. She started looking like she was going to cry. I had to back away so she would stop. And I thought I might start crying.

It's now almost 7:00. She is starting to make little noises. And she still is getting the sad face whenever I get near her. Maybe that will help me not to feel so sad when I leave in a little while to go back to my aunt's to see our other kids. My husband will stay with Lilly all night though. I couldn't stand if neither of us were here!

Lilly's nurse said she was so happy that Lilly could get treatment here, in spite of her Trisomy 18, and she hoped that more surgeons in the country would operate on these babies. AMEN!!

This Bible passage made me think about children with Trisomy 18 and perhaps a big reason why God makes them:

"As he [Jesus] went along, he saw a man blind from birth. His disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?' 'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the works of God might be displayed in him.'" - John 9:1-3

11 comments:

  1. Little granddaughter you never cease to amaze me!
    Praise God and thank you to all the faithful who have lifted you up in prayer!
    love,
    mah mah

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  2. I know thats got to be hard on you. I had a hard time watching when Crystal had pneumonia and was in the hospital so I can/can't imagine how you must feel.
    Love to you all.

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  3. Glad she is doing well. I probably shouldn't go to see her or she would REALLY start crying, since I 'm one of her favorite people! :-C


    Too bad she couldn't hug her doll like she does when she's SOUPPOSED to be napping! That would have given her much comfort. :-I

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  4. Very happy to see things went well. We thought that we would join you in the hospital so we could have more time to follow Lilly. :)

    God bless and keep up the good work Lilly.

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  5. YAY! Keep fighting, little firecracker!!

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  6. Praise the Lord! We have been praying for Lilly to have this surgery ever since my husband met Lilly's Grandfather at the coffee shop over a year ago. My girls are going to be as excited as I am when they hear that she is doing so well. A magnificent, amazing answer to prayer. We will continue to pray for Lilly as she recovers, and for your family. Many, many blessings!

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  7. Wonderful, wonderful news. I am so happy for Lily and for all of you. PTL!!

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  8. Lilly is such an encouragement to our family! She is so dearly loved and has such a strong sweet baby! It's humbling to think of your husband standing vigil over his daughter so you can get some sleep and take care of your other babies. My son Aaron was on my phone today and he exclaimed after checking my email that Lilly's surgery had been a success! We pray for continued healing, supernatural energy and trust in God's sovereignty.

    With much love and admiration,

    The W-H's

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  9. Praise God! His works ARE displayed in Lilly's life. You are all in my prayers.

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  10. Lilly you are a blessing from God!!!! Congratulations on a successful surgery.

    Grace Smith
    (Faith's Older Sister)

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  11. So happy that surgery was successful and that Lilly is doing so well! Hope this will make a tremendous difference in her overall health, and that she will just feel so much better all the time! She's just looking so healthy and great! We'll keep praying--- "D" in Tennessee!!!

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