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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, September 30, 2010

Survivor!

"Let everything that has breath praise the LORD." Psalm 150:6

First things first: Lilly survived the surgery!

Weight check = 5 lbs. 8 oz.

Today was Lilly's big day - she had the pulmonary artery band inserted into her heart.
She started her day with a bath and then posed for a final pre-surgery picture for mama. Doesn't it look like she's smiling?!

At 8:00 a.m. she was wheeled away to finish final preps for surgery. She looked so tiny on the bed as she was rolled away. It was exciting yet scary to let her go. It was downright strange to have her out of my sight. And thus began the waiting for my husband and I.

About 10:00 the nurse called me on my cell phone to say that Lilly had been cut open at 9:25. It would then take a couple hours before the surgery was finished.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." James 1:2-3

We felt mostly at peace yet too antsy to sit so we went outside for a walk. We ended up having a great time as we walked along the river and saw many things. We even saw dolphins!

Finally at 11:40 the surgeon himself came to tell us that the surgery was finished and Lilly was doing as well as could be expected. She was on a ventilator and was being given some blood. We would be allowed to see her shortly. He also said that Lilly did not have a thymus, which is actually pretty common in those with heart defects. The thymus is a lymphhoid organ just behind the sternum. The absence of it means that Lilly has an immune deficiency. (So don't be offended if I ask you to wash your hands before you touch her!)

I can't describe the relief and joy we felt after talking to the surgeon!

"I love the LORD, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live." Psalm 116:1-2

We finally got to go into Lilly's room. She was hooked up to all sorts of things. Tubes and catheters were sticking out all over her body. Her chest had been glued along the incision! She had a chest drain which will be removed before long. The breathing tube was down her throat and she had a big tube in through her nose. But she looked good! Her color was great!

By mid-afternoon Lilly was moving her arms and legs around and was responding to mine and my husband's voices. She stayed busy chewing on the breathing tube for hours.

All went well except late this afternoon, Lilly got extremely agitated when her throat was suctioned out. The result was that her hands and feet got icy cold and started turning blue. The nurse called the surgeon on the phone to see what he wanted her to do and others came in to help. Lilly was given more pain management medication to relax her. After she calmed down and started getting back to normal we were told that they hadn't expected her to be moving around so quick. One doctor actually seemed rather pleased. He said "She's fiesty! She'll probably be off the breathing tube very soon!" In fact, tomorrow they are planning to try Lilly just on the oxygen under her nose rather that the ventilator.

One nurse told me to "get used to" the turning blue bit. If I understand this correctly, the band in her heart keeps the blood flow contracted. If there is too much demand (i.e. she's upset) then the blood can't keep up with the demand.

We're just so very grateful for the Lord sparing Lilly's life. And for making our wee girl "fiesty"!

"Not to us, O LORD, not to us but to your name be the glory, because of your love and faithfulness." Psalm 115:1

19 comments:

  1. TO GOD BE THE GLORY , GREAT THINGS HE HAS DONE.
    MAY WE PRAISE HIM WITH THANKFULNESS AS OFTEN AS WE HAVE BEGGED FOR HIS MERCY.
    GOOD NIGHT MY LOVES
    MJ

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  2. "Go back and tell Hezekiah, the leader of my people, 'This is what the LORD, the God of your father David, says: I have heard your prayer and seen your tears; I will heal you."--2 Kings 20:5

    I have always loved this passage, but never more than now. The Lord has indeed heard our thousands and thousands of prayers and seen our oceans of tears......and He has answered our pleas.

    Thank you kind and gracious Heavenly Father! Your glory is shining all over this world through the handiwork of your tiny creation Lilly!

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  3. so happy for lilly and so happy for ya'll!!!! praise God:)

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  4. Feisty! I knew it!! What a girl. :)

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  5. To God be the glory! I'm so happy for this wonderful result! Praying for sweet Lilly....

    Susan Baker

    (and Kathryn and Alan)

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  6. Praise God!! I'm very happy to see this good news!

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  7. She has God living and dwelling within her! Such a true fighter, I am so very happy for you all . . what a blessed relief! May God continue to pour out His love, mercy and blessings upon Lilly and each one of you. Love, Cheryl

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  8. Lilly is smiling because she knows that she is in the right hands to make her better and her future looks bright !

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  9. Our GOD is so Good!!!!!! That beautiful smile and her bright eyes reveal that she is resting in the hands of prayer - comforted by Gods peace! {couldn't ask for a better place to be!] "For you are great and do marvelous deeds;you alone are God'' Feisty she is and may she remain !

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  10. Just found your blog yesterday - what a powerful story! And I'm so SO glad everything went well!! Praise God. :)

    ~ Megan

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  11. Praise GOD PRAISE GOD! I just keep praying all the time! *smile* there are tears of joy in my eyes :)

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  12. So glad to read Lilly is doing fine after surgery. She truely has Gods hand above her head and on her heart ond on youres :-))

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  13. We are friends of Ashely Stoop and we have been keeping up with miss lilly. She is in our prayers and also on our prayer list at church. She a beautiful little girl and my heart goes out to u and your husband. We have never met but lilly seems like my little girl. To me all babies are a miricale of God. We love u all and u all are in our prayers.

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  14. I'm so happy she is doing well. I'm praying for her. Give her a kiss for me.

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  15. Praise God! That is fantastic news! I kept in touch through Grandma Marsha all day yesterday. That is the best news I have had in a long, long time. I am so thankful God kept his hand on her and brought her through. I'll keep praying that her recovery goes well. God Bless!

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  16. Such wonderful news! God is so good! We'll keep praying for your little fighter!

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  17. PRAISE GOD. Lilly is so pretty and a very special little girl. I'm always asking Jim about her but now will check your site and get pictures too!

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  18. So happy that Lilly made it through the surgery and is FEISTY!!

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  19. Mah Mah and Shisshy cried as we lifted our hands in praise to the Great Healer when we got your call.
    This was done while driving with your other children in my car, but God was with us. We sang Mah-Mah's new "God Bless Lilly" song slightly changing the words to thank God and praise Him.
    And I think she gets her fiestiness from sister Tabby.
    When she is older she will be able to hold her own with big sister. This,too, is a blessing.
    BEAUTIFUL, BEAUTIFUL DAY!

    SHISSHY

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