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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

Thursday, October 7, 2010

Freedom!!!!

Lilly (and my husband!) were discharged from the hospital this afternoon. Yay! I drove them back to my aunt's house and after our son woke from his nap, we all went for a walk. How glorious it was to get out during the day and walk!

Lilly had a busy day getting ready to leave the hospital. The pict line was removed from her head. (We got to take the bandage you see in the pictures off once we left the hospital.) That oxygen tube under her nose was removed and she also got a new NG tube for feeding. (I put it in her nose myself. She will continue on the feeding tube for awhile, with formula added into the breast millk. We really want her to gain some weight.
Lilly is on a several medications. I think I have these straight:
- Vasotec - for her blood pressure
- Lasix - keep fluid around her lungs down
- Zantac - make her tummy feel better
- Aldactone - help keep her potassium levels up
- Bactrim - an antibiotic (since she has no thymus)

She takes the first 3 twice a day, the 4th once a day, and the last 3x three days a week.

She has an appointment with her pediatrician back home next Friday. We need to make an appointment with her cardiologist for the following week. She'll probably alternate seeing those doctors each week for awhile. The pediatrician will monitor nourishment and weight gain and of course the cardiologist her heart.

We will drive home to N.C. tomorrow! We can't wait to be back in our own home, all together again. :) Though we could ask for a better place to stay than my aunt's house here.

Lilly (and my husband) were in the hospital for a total of 3 weeks and 1 day. We were really impressed with the care she received at Wolfson's. There were a couple of nurses in particular that were just so caring and went above and beyond our expectations. It was almost sad to leave the hospital! But we'll be headed back in a few months for the open heart surgery.

13 comments:

  1. Wonderful news! Glad you are all together again as a family - may you have safe travel tomorrow! Hopefully I can see you all soon. Love Lilly's shirt -she definitely is one of a kind!

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  2. This is WONDERFUL news... She's as cute as a button in her little outfit! She has such beautiful eyes... Lily and you all are in my daily prayers... Hugs to you,
    Donna

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  3. SO HAPPY to hear that Lilly is well enough to be out of the hospital and that you all get to go home tomorrow. Lilly looks so bright & alert! Drive safely & thanks for the daily updates!!

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  4. so excited for everyone!!!! and i love her outfit in the pics:)

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  5. WOW. Who would have thought???? Such great news. Love to you all.

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  6. WELCOME HOME
    SEE YOU SOON
    GOD BLESS AND DEFEND AND PROTECT
    MJ

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  7. dear lilly grace,
    how lucky you are to have big sister tabitha looking after you. i loved watching her holding you and rocking you and singing to you tonight.
    and i could tell you loved it too!!! mah mah loves her little granddaughters! (and grandsons too!)

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  8. What wonderful news!

    Susan, Kathryn, Alan Baker

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  9. Soooo glad you'll all be home soon! Amazing! Look forward to seeing you all together and healthy soon!!! So proud of all of you!

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  10. Praise the Lord for his marvelous works! Hope your journey home is safe. God bless you all:o)

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  11. We are so excited for you! It has been such an encouragement reading through your blog and seeing the faithfulness of our God to keep you in His peace! It is undeniable! So glad you get to come home with fresh hope and perspective! Thank you for being so faithful to keep us updated and encouraged! We look forward to seeing you at Keepers! The Cardin Family

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  12. Yeeeeehhh :-)))Congratulations!!!So happy to hear this good news,
    You did forget one special medication though: Lilly got and still gets all youre love and care everyday and what more can a little girl want from her parents.
    I'm so happy :-) Whish you and youre little Lilly all the best. Hug and kiss for you all.

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  13. What a beautiful little peanut your Lily is!!!! I pray for her continued recovery from her recent surgery and that God will continue to give you the courage and strength that you have had thus far in caring for your wee one!! Miss Lily is truly a fighter and an inspiration to all!!!!

    With love in Christ!
    TN

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