Lilly's Trisomy 18 physical features

Weight check = I don't have the courage to check today. I have started adding powered formula into her bottles of breastmilk, so I am hoping that will add weight.

I took this picture of Lilly in the red chair this past weekend when we visited family at their river house. Miss Lilly is wearing her nautical stripes.

On a happy note - Lilly has begun cooing! I've had a couple of sweet conversations with her. What a blessing!

Lilly has the most common type of Trisomy 18. It is called Full Trisomy 18. That means that in every cell of her body, there are three of the 18th chromosomes, instead of two. What causes this? It is not known. It can happen to babies of parents of any age or race.

This plays out in some common physical features for children with this disorder. I thought I would share Lilly's.

"Rocker bottom feet" - there's an extra pad on her heels:

I don't know what to call this next one, but I read someone's description of their T-18 baby and the doctors said the way the hair grows on the back of the head is from T-18. It's like there are two swirls on the back of her head. The result is the hair in between grows together and up. (Punk rockers would envy this natural mohawk!) By the way - Lilly doesn't seem to have lost any of the beautiful dark hair she was born with:




















The next picture shows several of Lilly's T-18 features. First, the shape of her small head is called "strawberry shaped." Her mouth and jaw are very small. She's got different looking ears - known as "elf ears." (A photographer recently told us Lilly had "the strangest looking ears" he'd ever seen. Can you imagine saying that to a child's parents? It did make me think if I ever saw odd features on someone else, I would wonder if they had a serious life threatening disorder.) In spite of those things, I don't think this is a face only a mama could love:














Lilly still holds her hands with her forefingers tucked under the rest of her fingers and thumbs crossed over. They're not always as tight as they used to be:














Those are Lilly's external T-18 "markers." Internally we know that her heart has a hole, also very common with T-18 children. Ultrasounds I had while she was in utero showed some issues with her brain. Other than that I don't know about other internal problems. Nor do I think I want to know yet.

UPDATE:  Click HERE for Part 2 of this post.