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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, March 2, 2011

A good fat to fatten up on

Weight check = 8 lbs. 9.5 oz.

Yesterday I made a wonderful discovery. On a whim I dabbed my finger in coconut oil and put it in Lilly' mouth. She loved it! If you've never used coconut oil it is in solid form until it is warmed. So I would put a little chunk in Lilly's mouth and it would melt in seconds. She seemed to enjoy swallowing it much more than the breastmilk by bottle. (I'm sure some of you are thinking how unhealthy coconut oil is. But it's not. It is a really good fat. You can learn about it in books like Nourishing Traditions.)

Lilly didn't seem to have any problem digesting it so I gave her more today. She again seemed to enjoy it. I'm loving that - more calories! In fact, she is a whole ounce heavier today than yesterday. (I also have increased the amount of milk she's getting per hour by her pump; and am adding back in a very small amount of formula.)

The weather was beautiful this afternoon so I put Lilly in my Moby Wrap and we went for a walk. Lilly got to try out her new sunglasses. Trisomy 18 children tend to have eyes that are very sensitive to the light. I probably need to get Lilly a hat with a wide brim too. The sunglasses have an adjustable strap around them but of course was still way too big. So I made the strap smaller and fastened with a safety pin. (Safety pins are invaluable with Lilly. I can adjust her clothing and pin down her arms so she can't pull her tube out, etc.)

If you've noticed the white tape on her cheek, we are trying out a different kind of tape for holding the NG tube in place. It's a cloth-like "breathable" material. The Tegaderm has just torn up her poor little face so bad.

My husband called the cardiologist's office at the Florida hospital today about Lilly's VSD repair surgery. We hope to have a date for it at the end of next week.

"But for you who revere my name, the sun of righteousness will rise with healing in its rays. And you will go out and frolic like well-fed calves." - Malachi 4:2


  1. Looking good, Lilly! About the sunglasses: Miraflex brand. We ordered the smallest size they make and they are perfect for Stinky's little head.

  2. Happy to hear Lilly is gaining even more weight!! She's rockin' those sunglasses...:)

    Love to all of you,

  3. Yummy Coconut Oil - I am thankful you were able to discover this. I have been thinking and checking up on Lilly....

    Bridget (Christina's Friend :D )

  4. I'd love to know where you got the glasses with the strap? Our foster daughter has a missing ear and she loves to wear sunglasses, I even bought her a pair but it's difficult for her to wear them and ends up being more of a frustration for her. Straps might make it easier for her...