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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

Saturday, September 18, 2010

A fresh clean baby

Weight check = 4.8 lbs. Yes sadly Lilly dropped a tiny bit of weight. The dr. said he was expecting that though. She lost a lot of fluid yesterday. Even with the Lasix she has so much fluid around her lungs.

This morning Lilly was running a fever. That finally broke this afternoon. Her little body is just working so hard to adjust to so many things including learning to process all that food in her.

Speaking of food, we are continuing with her eating every 3 hours. By bottle for 15 min. and then finish up with tube feeding. We have
noticed that Lilly seems to alternate how well she does at the bottle portion of the feeding. It's usually every other time that she does great (drinking about half the bottle) and then in the in between times drinks only a tiny bit and refuses the rest.

Lilly had more blood drawn today for some tests including a thyroid test. The dr. is wondering if she's having thyroid problems and that is affecting her lack of growth. I'll be curious to find out as I assumed it was only trisomy 18 related.

I had an extra blessed time with Lilly this afternoon because I got to give her a bath! Now I like bathing her anyway, but I can't tell you how wonderful it was to hold her with all those monitors and wires off of her. (Except for the NG tube had to stay in her nose.) But it was so nice to wash her in warm water and be able to feel her soft baby skin without interference. Another thing I'll never take for granted!

Then after bath time I dressed her in fresh clothes which included an adorable, soft kimono type shirt made for Lilly by my dear friend C. Lilly's extra huggable in it. :) Lilly is wearing the shirt in the first two pictures. (Note the side tie - perfect for easily keeping all those wires on her chest and sides inside the shirt.)

The bottom picture is of Lilly holding her "diplomas." (Rolled up washcloth bits for her to stretch her fingers a bit. Her hair looks extra crazy in the picture because it had finally dried from being washed in her bath. (Her hair is soooo soft and sticks up like crazy when it's clean and first dry.)

My scripture for Lilly (and my husband and I) today is from Luke 1:37: "For nothing is impossible with God." Can I get an "amen"?! :)


  1. that first photo almost makes her look big. :) GO LILLY!! keep eating girl. xxoo

  2. I love the 'wild hair' picture after her bath!
    Her looks like an itty bitty baby birdie.
    Love you, Lilly


  3. And! Miss Independance looks great in her red, white and blue stripe appropriate for u are a winner

  4. they do look like little diplomas...:)

  5. Lilly inspires me to never let anything get me! She's a consumate fighter. I see her spirit, her tiny fighting nature, her bursts of fitfulness and I chastise myself for being weak about whatever I'm battling. I love what you said about the absolute pleasure in simple things like bathing her, about never taking a thing for granted, it was so beautifully said! God bless you all, especially this little marvel of God's infinite perfection, darling Lilly! I keep her in my prayers.

  6. keep fighting little granddaughter. you are fearfully and wonderfully made! made in God's image! i love you!!!!!
    mah mah