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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, September 22, 2010

Pinchable cheeks!

Weight check = up but not sure by how much. Lilly has this enormous IV on her hand and lots of tape and padding around it so they don't know how much she gained and how much is the IV thing.

Lilly was so much more relaxed and at peace today. She slept on me almost the whole 9 hours I was at the hospital. So that's what our Lilly picture is of today. She's sleeping so hard her little mouth is open.

Good news - Lilly's color was much better today and her cheeks are actually round enough now that I can get a teeny tiny pinch out of each one. The blood transfusion she had last night seemed to agree with her. :)

I came home without my husband and Lilly tonight. We had hoped Lilly would be released today but it seems they keep finding something to be concerned about that needs further observation.

Early this morning she had another chest x-ray. It showed that Lilly has a lot of gas in her stomach and way too much fluid in her lungs. She's on medication for these things so the doctors were very surprised. However my husband may have figured that one out. Lilly has spit up twice about 15 minutes after having her medications. So she's not keeping them down and they're not in her long enough to help her. The nurse was giving her 3 different medications plus a multivitamin all at once through her feeding tube. Then because the medications are sticky they have to push some sterile water through the feeding tube. All together those liquids added up to way more than her little stomach can hold. (And remember she is getting the milk on continuous feed too.) So this evening the meds were going to be spaced out to see if that helped. I'll find out tomorrow if it did.

Lilly's bloodwork showed that her sodium levels were very low. They don't know if it's caused by something in particular or is an effect of her having trisomy 18. So they're adding electrolytes into her milk.

I joked with my husband that he can say he has been in the hospital for 8 days now. Of course Lilly's the one that was hospitalized. But my husband has been in the room the entire time with her and goes everywhere with her that she is taken for testing. He only leaves when I'm there to go out for food and to check his work e-mail. I am so incredibly grateful to him for that as I can't stand the thought of Lilly being there without one of us. (There are baby boys - maybe one year old if that - in rooms next to Lilly and they cry so much. We never see anyone in their rooms with them except hospital staff and we find it so sad it makes us want to cry right along with them.)

Today I was thinking about how even though it is difficult how our family is split up right now, I know it's just for a time and Lord willing, we will all be back together soon. It's one of those "seasons" of life. That reminded me of what King Solomon wrote: "There is a time for everything, and a season for every activity under heaven" and in his list of things which follow is "a time to heal." (Ecclesiastes 3:1 , 3b) I pray this is the time for Lilly to be healing! I've always liked what Solomon wrote in this passage. It was first seared into my brain when I was seven years old. My aunt had died in a fire and we were at her funeral and my dad read this passage at the service.

Solomon wrote another thought provoking verse in this same chapter (verse 11): "He [God] has made everything beautiful in its time." That is so mind boggling and comforting at the same time to know that God can make horrible tragic things "beautiful."


  1. and on that mostly happy note... I'm off to bed. So glad I got to read tonights post before going to sleep. I feel good seeing her pic. She looks peaceful, and content... and I love the "pinchable cheeks." xxoo

  2. you can tell even your picture that her skin is "pinker"!!!! she looks so content in the picture. plus, she's saving those calories while sleeping:)

  3. smack!! KISS THAT SWEET CHECK!! hope that did not wake her...
    this wonderful blog has been a true help to us, to keep in touch...that is the draw back at the river, U know...will not get to read again till Sat morn but have the cell phone with us if needed.
    so to my darlings...blessings from our God today and always...and our love
    mama and daddy

  4. Hurray for Daddy figuring out our little Princess was getting over fed. And God Bless him for being with her day and night and comforting her and Lisa so she can be with the other children some of the time. It is always good to have someone from the family at the hospital to observe things the nursing staff can't and someone who knows what is normal for the patient. Kudos to Frank.
    I think we can nominate him for "FATHER OF THE YEAR".


  5. Sweet, sweet picture! You guys are troopers and Lilly takes the prize. How heartwrenching to see those painful but necessary things done to her! I'm with you on not wanting to leave her alone for one minute! Lilly has a special place in my heart and prayers. Can you email me an address where I can send you something, Lisa?

  6. She is beautiful! We are praying for your family. Our Annabel was born April 30, 2009, also with full Trisomy 18. Please check Annabel's blog: