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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, October 2, 2010

It just keeps gettin' better

If you read my blog early Saturday morning, you may not have seen a very important updated post: Lilly came off the ventilator without a problem! (Another answered prayer, praise God!) She now has some oxygen blowing in her nose by a tube under it, just to continue to help her a little while her chest recovers. The dr. said she was breathing with "normal effort." Also that her cardiovascular system was normal.

They took artery lines out of Lilly's wrist and neck today. We didn't realize until today that she had a couple stitches in her neck (around the artery line) and the top of her chest. The neck stitches came out today. Several medications were either cut back on or stopped.

At rounds today, the dr. ended his report on Lilly by saying "very good - it's looking good." :)

Lilly was fussy much of the morning and early afternoon. We could tell she was hungry! About 4:00 they put a new feeding tube in through her nose and started her back on breastmilk. (No formula added in yet.) She finally became quite content.

Another huge highlight of the day was when we got to hold Lilly! She finally had enough stuff off her that we could carefully hold her. (Still a lot of tubes and lines left to be careful not to bump or pull.) But it was so wonderful. (I don't think I'll ever again take for granted what a blessing it is to be able to hold my baby whenever I want to - or the baby wants me to.) With milk in her tummy and then in my arms, Lilly's heart rate dropped to about the lowest we've ever seen it go. (That is a GOOD thing! It meant she was very calm and relaxed.)

We're hoping and praying that Lilly will be moved out of the intensive care unit soon, so her brother and sister can come see her (and my husband will have a slightly less uncomfortable place to sleep). Our children came to the hospital yesterday and went on an adventure walk with my husband but were frustrated they couldn't come back to Lilly's room to see her. Apparently when they first arrived my son was telling anyone that would listen "LILLY!!"

I can't wait to find out what tomorrow holds!

"Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23

13 comments:

  1. Cheering for Lilly! What wonderful news!

    Susan Baker

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  2. I have been smiling for several days in a row now!! She looks so cute in these pics :)

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  3. There's something magical about Lilly, she tugs at my heart and wraps me around her tiny little finger! I am so moved by reading this blog, comments like the one about the simple joy of holding your baby, and not taking anything like that for granted. Lilly is a constant reminder of life's precious tenacity. God bless you all!
    Cheryl

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  4. well, dear little granddaughter,

    The Great Physician literally IS working Psalm 147:3
    out in your tiny little body...

    "He heals the brokenhearted
    and binds up their wounds."

    Praying today will be the best day of all for you!

    love,
    mah mah

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  5. i loving these calm days for you guys!!!! praying for many more to come!!!!

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  6. So glad we're able to keep up with Lilly's progress through this blog! We're holding all of you close in our hearts and prayers daily.

    love to all,
    Michele Fontana

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  7. that is awsome alot of answered prayers. We are still lifting her up in prayers and also your family. God answers prayers not on our time but his time. lots of love.

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  8. YEA for feisty Lilly! Praising God for his healing powers & just praying she gets stronger every day!!

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  9. What a miracle God is working in feisty little Lilly!! Praises to Him for his mighty power and love. Praying that Lilly continues to improve each day.

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  10. Wrapped in the arms of love...can't tell who is more content! So glad you could hold your baby girl again!! May all of us moms embrace our children often ; not only with our arms but ALWAYS with our prayers!
    Blessings-

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  11. Wee little one.....you are a blessing and a miracle. You look so good in your picture with your mommy. That is the best feeling in the world isn't it? For both of you! :o) It's only going to get better. We are ALL so thankful for you. Hugs and kisses!

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  12. Thinking of you all and continuing the prayers for Lilly! It's wonderful to read good news!

    Love,
    Amy & Family (Jo's friends)

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  13. Dear Lilly, I was so happy that mama let me spend the day with you!
    I can't wait for you to come home today!!!!! (Lord willing)
    and Hunter yells Lilly get home!!!!!!!

    love,
    tabby

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