Williams Syndrome?

What is Williams Syndrome?

Most young children with Williams syndrome are described as having similar facial features. These features include a small upturned nose, long philtrum (upper lip length), wide mouth, full lips, small chin, and puffiness around the eyes. Blue and green-eyed children with Williams syndrome can have a prominent “starburst” or white lacy pattern on their iris. Facial features become more apparent with age.

My sister shared this article with me. This is another condition that can potentially cause the issues Freya is having. I’m hoping that my breastmilk issues are the only culprit. They tell me if she gains enough by Monday we can take her home. I don’t want to have to follow her up to Little Rock to Children’s hospital. I don’t want to have to struggle the struggles of a parent with a sick/sickly/disabled child. I know that no parent of such a child wants that. I would love her no less and care for her no less, but it would be a hard life for all involved.


They came to take her and put her footprints on the wall. All the pediatrics patients have that done (or handprints). She smeared the left foot so it looks like she’s got a deformed foot, but her name and prints are on the wall outside her room forever (or at least til St. Eds does renovations on this wing).

Now they’ve got her in the treatment room giving her her fist bath since she got here. She made sure to poop just in time for that. I love bathing my babies, but with the IV and tape still on her arm, I’m glad they’re doing it for me.

She’s pooped a lot in the last 24 hours, and it’s the consistency baby poop should be. I’m proud of my itty bitty baby. I’m hoping she goes home tomorrow. Sometimes, failure to thrive (FTT) seems to be blameable on diet and the diet change reveals other issues.

The doctor told me about one patient who had FTT so they switched from breastmilk to formula, and then it turned out the little guy’s intestines were blocked, but the poor diet was disguising the underlying issue. At least my little poop machine doesn’t have this problem.

They have her drinking Enfamil Newborn Premium with Lipil. I saw a commercial for it. Apparently it’s designed to help power the growth that newborns are supposed to do (birth-3mos) which explains why my 4mos baby is on it: she’s newborn-sized.

No more news than than. She gained an ounce or two yesterday.

Tonight’s midnight weight is defining, unless they decide to weigh her again for the doc tomorrow.

Keep making progress baby girl.


Somebody’s baby is coding down the hall. I feel for them but I’m glad it’s not my baby.

Pic I took last night.

Forgot to post.

View the full blog at heartchasms.blogspot.com and like the blog on Facebook.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s