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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 23, 2010

5 lbs. 5 lbs. 5 lbs.!!!!!!!!

Weight check = 5 lbs. 1 oz.!!!!! Yippeee! Clap and cheer for Lilly! Thank you God ...

Lilly had more blood work this morning. We learned her sodium levels are still really low so they've upped the electrolytes they're adding to her milk even more. The dr. thinks that is probably caused by the Lasix medication.

Late this afternoon Lilly's doctor and the surgery team were to have met to discuss cases including Lilly's. The doctor said that when she meets with us tomorrow (Friday) she hopes to have a more concrete plan for Lilly and the upcoming surgery, possible release, etc.

Lilly's brother and sister got to come for another visit today. Big sister was so happy to hold Lilly again. (Thankfully she wasn't so afraid of all of Lilly's wires today.)

Lilly's doctor mentioned that she had just been referred the case of a local woman that is pregnant with a trisomy-18 baby. Amazingly that woman is a friend of a friend of my aunt's and I talked briefly with her a few days ago by phone. I just can't believe all the T-18 babies I've been finding out about when I had never even heard of it before this year. My mom told me she sat next to a woman on a plane recently and that woman had lost her T-18 baby earlier this year. If I'm remembering the stats right, there are about 6000 T-18 babies diagnosed each year. Of those 6000 about 2000 are aborted. Of the remaining 4000 over half die at birth. Of those that are left, 90% die within their first year of life. It's amazing, isn't it, that Lilly is still alive! (By the grace of God.) What a strong little fighter. She was born on Independence Day and at the hospital she was nicknamed "Little Miss Firecracker."

At the hospital today, the cleaning lady asked my oldest daughter why she wasn't in school. My daughter politely answered that she is homeschooled. I've been thinking these past few days what a blessing it is to have choosen to homeschool. Or else my daughter wouldn't be able to be with us and spend the time that she does with her sister. (And yes I did bring a lot of her homeschool work with us!)

My oldest daughter likes to ask people who their favorite historical person is. When they ask her in return, she always gleefully exclaims "Martin Luther!" One of her favorite hymns, which she loves to play on the piano, is Luther's "A Mighty Fortress" song. I thought of this today when I read a very reassuring scripture: "The Lord is my rock, my fortress, and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold." Psalm 18:2.

4 comments:

  1. it was great to see you yesterday little granddaughter! and to see you are looking better. mah mah loves the picture of tabby rose holding you.

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  2. *WOW!!!* Lilly, the 5 pound wonder! Amazing! God is so good! Can't wait to read more! Amazing!

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  3. love the pics- especially the the one of you and sissy!!!! good luck today meeting with the docs. we'll be praying for all of you!!!!

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