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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

Monday, September 27, 2010

Milk. It does a body good!

Weight check = ?? I don't know but it has not dropped.

This morning when I saw Lilly I was shocked. She was laying limply in her bed and was a ghastly pallor. I was afraid to speak to her because of yesterday so I just sat in a chair and watched her. I kept thinking that must be how Lilly would look close to the moment of death.

But after about an hour or so, Lilly began moving around. She kept putting her fists into her mouth. It was cute but in doing so she was knocking out her oxygen tube and pulling on the feeding tube in her mouth. I could tell she was very hungry (she was still only on IV's for nourishment) and I even heard her tummy rumble. I tried putting my pinkie knuckle in her mouth. Wonderfully that made her very happy. I leaned into her bed for one hour while she contentedly sucked my knuckle and looked at me. Yay!

The doctor found out that Lilly's surgery can not be bumped up from Thursday so he ordered her feedings to begin again. They decided on giving her more calories and making her food more dense. So not as much to fill her tummy but she'll get the nourishment and the calories. (28 calories per ounce of milk done by adding formula to breastmilk.) Again they felt that her feeding was linked to her struggles with breathing. Too much food in her belly makes her heart and lungs work too hard to deal with it. So after Lilly had been sucking my finger for an hour, the nurse came in with a new NG tube to stick down Lilly's nose into her stomach and then hooked it to the milk pump and turned it on. While the nurse was doing this, I took my lunch down to the "family room" where we're supposed to eat. When I came back Lilly was on the milk and so much more content. Before long she looked great! Her color had come back and it was almost like we were seeing her cheeks grow rounder again before our eyes. Soon she was so content she feel into a long peaceful sleep.

If Lilly's temperature and breathing stay stable enough, she will be moved back out of the intensive care unit to the floor she had been on, to await surgery.

We noticed something neat that the hospital does - whenever there is a baby being born, a lullabye is played over the intercom. It's so sweet sound it makes me want to tear up. One of the most wonderful and amazing things in the world is a baby being born!

Another random observation is that probably the most common thing that the staff (and us!) say to Lilly when she's fussing is "I know ... I know ..." It sounds all soothing and understanding but I daresay not one of us really knows how Lilly is feeling. And yet I'm sure I'll find myself saying it again before long.

My last picture today shows Lilly doing some homeschooling. She is studying her lines. I've done this with all my babies - it helps them get better at focusing their eyes. Soon we'll move onto simple black and white drawings of faces. Lilly seems to enjoy looking at her lines as much as her brother and sister did theirs.

I read a couple chapters from Ecclesiastes today to Lilly. After we finished the book, she let me know this was the verse she liked most today: "Anyone who is among the living has hope ..." Ecclesiastes 9:4

10 comments:

  1. what a beautiful Lilly...she looks much much brighter with those clear eyes looking at her mama...expression is there, in her bright face and eyes.
    one of ninny's friends said she liked best that you ended each daily blog with a Bible verse.
    so do I
    I love both of my L's
    Good night and God Speed
    mj

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  2. Lisa, you are such a good writer. You speak from the heart and write honestly of your feelings which so many people can relate to. Your blog is doing so much good. Thank you for taking the time after a hard day to write it. I look forward to reading about Lilly's day, and it always reminds me to talk to the Father about Lilly and about giving you & your husband strength.

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  3. Poor wee one....I hate that IV and feeding tube for her. But, she does look very peaceful and content in the pics. I pray that today and the coming days will be even better. So glad they gave her something to eat. Can't stand the thought of her being hungry. She's just such a sweet baby!

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  4. Fluids do not fill you up like milk does...You tell 'em Lilly!!!! Her cheeks are really filling out:) I love the verse today...so true!!!!

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  5. that middle picture is beautiful.

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  6. You have touched my heart and I am praying that God touches Lilly's heart with a supernatural healing. He has her in His hand. Be strong in the Lord. Amen

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  7. I really loved all the pictures of the day, Lisa! You're so brave and seem so calm amidst so much! We are so encouraged to read your posts and I agree: You are an excellent writer! Miss you all and can't wait to see those new Lilly cheeks!

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  8. Sending you and your family prayers and healing....Lily is so darling, such a fighter! It sounds like the hospital that you are in is a good one...I love that they play the lullaby when a baby is born, that is so touching, that they take the time to do such a small wonderful thing must mean they are GREAT at the big things!

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  9. Just wanted you and your family to know that all of you are in my prayers. God has entrusted special parents with this beautiful gift. Cherish every moment. God's hand is at work. He knows the lives that are being touched through your Lilly. I'm praying especially for her surgery and comfort for your family as well.

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  10. I have always believed ''Homeschooling" is life learning - and what wonderful lessons you teach. You are not only teaching Lilly how to focus her eyes but more importantly how to focus her heart on our Lord and Savior Jesus Christ! You know how I love Ecclesiastes - and yes Lilly may we all have Hope!

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