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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

Wednesday, July 20, 2011

Back home


Weight check = 12 lbs. 6 oz.

We're back home now after spending some time with my husband's family. Friday was my father-in-law's funeral. My husband gave the Eulogy and did a fantastic job describing Pop and the strong, generous, and spiritual man that he was. Our Lilly's full name is "Lillian Eva" and she was named after two relatives. "Eva" was Pop's mother, who died when he was a little boy. "Lillian" was my great-grandmother.

Shortly before we left town, I had a moment of panic because Lilly's entire g-tube got yanked out! My daughter T. was holding Lilly and lifted her up to stand her on my desk. Lilly suddenly began crying loudly from pain. T. took her back down and Lilly soon calmed down. Shortly after T. brought Lilly to me and said Lilly had leaked all over her. I noticed Lilly's onsie was soaked. Then horror of horrors - when I opened it the whole g-tube (with water balloon still inflated) was loose in her onsie. (The water balloon stays inside Lilly's stomach to help keep the whole g-tube from coming out easily.) The open hole to her stomach was staring at me. Lilly herself was staring at me and smiling.

I got out my directions on what to do if this happened. I had to put a "Foley" three inches into her stomach hole, and then inflate it with a little water to keep it from slipping out. (See today's picture.) It was evening so I wasn't sure how easy it would be to reach the surgeon, so I called my friend K.L., who has a little boy with a g-tube. She was so kind to come right over and showed me how to deflate the g-tube's "water balloon", pop part of the tube back in, and then inflate the balloon again with more water. It all went smoothly and we've had no trouble since. Thank you again K. for saving the day! :)

I couldn't help but think of this scripture, after the g-tube mishap, as it applies to so many areas of our lives:

"Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up!" - Ecclesiastes 4:9-10

6 comments:

  1. Oh dear GOD! It must have been so hard not to panic! Praise God for good friends like K.

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  2. That K is an Angel. I know what other wonderful things she does. Thank you, K, for being there for our girls. God gives us angels on earth. We just can't always see their wings.

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  3. Oh man, we have so been there with my little sister! It's definitely hard not to freak out and she seemed completely unphased at the time too:) Praying for you all often and thankful for your example of walking in strength and truth!

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  4. Well,

    It was more like a SCREAM when it pulled out. She wasn't only happy but was making the mile stone of shaking her rattle when I got soaked.

    After I HAD to think, "I was holding a baby with a OPEN stomach!!!!!!!!!" What a differance it makes to not know these things.
    But when you realize whats wrong, it's all just,
    "I remember that time Lilly's g-tube popped out!
    YUCK! GROSS!"

    Well, we probably made the 'recycling
    co.' happy! They probably would be pleased to know that we 'saved trees' by using Lilly's g-tube again! Yes, just think of all those trees we would have used to throw away Lilly's g-tube!
    :-D

    T.

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