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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, January 31, 2011

Keep fighting little "fighter pilot"!

During the night last night, Lilly's fever dropped down to almost normal. This morning it shot back up to 102 degrees. Dropped again to 99 then back to 100. So it's still there but better. (For those who asked - Lilly was checked for a UTI almost as soon as we got here and it came back negative.)

Last night we got word that the cardiologist said Lilly's morning echo showed a little less fluid. The doctor is continuing to give Lilly a high dosage of Lasix.

We've also been asked by some people if Lilly has apnea. So far the answer is "no." The nurse that cared for her the last 2 nights said she had two children that have sleep apnea, and she didn't observe any of the characteristics in Lilly as she cared for her during the night.

We found out that Lilly is now 22 inches long. That is 4 inches longer than at birth. That means she's no longer the height of an American Girl doll, but taller. So I will just have to take another picture of our "All American Girl" once we go home. (There is an early picture of Lilly with my other daughter's American Girl dolls down at the bottom of this blog.)

One nurse Lilly saw on Saturday gave her a HUGE compliment. She called Lilly "chunky!" Isn't that great? Lilly's nurse today is a man that reminds of an in-shape biker dude. But he's really good with Lilly.

I initially thought of Lilly's C-PAPP oxygen get-up as making her look a little like an elephant with a long trunk. But my dad said it reminded him of a fighter pilot. I decided I like that description a lot more. Goes with the whole tough Lilly keep fighting theme.

Last night once they started Lilly back on her milk she got quit and relaxed and was finally able to sleep. Since then she's only made occasional verbal comments. So that made us think back to her non-stop talking yesterday. Here we thought she was just trying to have a nice conversation with us. But really she was probably saying "I'd like some milk please." "Please may I have some milk?" "Excuse me - please get that milk started." "Hello? I'm hungry here." "OK - I AM STARVING TO DEATH!' "GIMME MILK NOW!" "Wow these people are dense ..." Poor baby.

We are so thankful we can both be here every minute with our Lilly. But we miss our other two children terribly. (They are staying with my mom and stepdad and seem happy though. I'm sure my daugher doesn't mind missing homeschool!)

Thank you to everyone who have left encouraging comments on the blog, sent e-mails (yes I read them - just haven't made the time to respond), left voicemails, or come by. It really is encouraging to us to know there are so many people praying for our little Lilly. Thank you, thank you! Lilly is proof that "the prayers of the righteous avail much."

We just got word that Lilly's regular cardiologist is in the building and is coming to see her shortly. And that he asked that she have another echo.

"Oh, how great is Your goodness, which You have laid up for those who fear You, which You have prepared for those who trust in You in the presence of the sons of men!" - Psalm 31:19


  1. AMEN!
    We will all be holding our breaths waiting to hear the results of the latest Echo.

    At a girl, Lilly> Fighter Pilot fits beautifully
    (Good thinking Grand daddy)

  2. Thank you for the update. Been thinking of your Lilly all day. :o)

  3. Go Lilly! Keep fighting sweet girl, and make them feed you! ;)


  4. You poor thing Lilly!

    You need a even stronger personalty to make them feed you!


  5. Its been a little hard to laugh about anything the past couple of days, but you made me LOL at the "feed me" part. :)

    Keep flying Lilly!!

  6. You are in our thoughts and prayers. Fight baby girl Fight!!!

  7. Lilly is in my thoughts and prayers. Keep fighting baby girl! <3

  8. I have been praying for Lilly for some time. Thank you for keeping us updated concerning her progress.

  9. I have been thinking and praying for all of you. Give Lily a kiss from uncle Dennis and tell her I said "keep fighting".