Welcome.

This is the story of our daughter Emma. Her story begins with a rare birth defect called Gastroschisis. This space is dedicated to the days before her birth and the many that are sure to follow.

Thursday, July 24th

4 lbs, 2 oz.! Great growth scan today. She's moved up to the 11th percentile. We're very proud of her - she's a fighter just like her sister. I was hoping for the high 3 lb range, but never expected her to eclipse 4 lbs. Monday is the start of the 34th week, so she really needs to pork up! We've started to waffle on the name Charlotte. Charlotte means "little and strong". Given her size, we felt that the name was appropriate. We called her Emma for so long that it just seems like an uphill battle to know her with another name. I didn't feel like Ava's name was up to us - just felt right. Same holds true for Emma.

The weekend is close. It always begins with a trip to the North Carolina Museum of Life & Science. Ava plays with the exhibits and we help when she asks. When the weather is cooler we like to see the animals outside. Bears, wolves, lemurs, and a handful of farm animals are definitely highlights. The real fun is in watching her think about what she sees. Better than that is watching what Mom thinks.

My wife is always engaged with her. They laugh while learning. I love my wife for her beauty and intelligence, but most of all for her compassion.
She believes that the things you love are worth fighting for no matter the obstacle. The giant can be dispatched by a stone. The mountain summit reached. Sometimes the impassable barriers of our own perceived limitations can be shown to us by others to be as paper thin as the thoughts that contain them.


3 comments:

mom24 said...

Hi, 4lbs is great! How much longer before you are induced? I'm 25 weeks with a gastro baby, and I'm wondering when she started falling behind in growth? My first and last ultrasound was done at 20 weeks and at that point they said he was right were he is suppose to be. They never told me that these babies fall behind and are much smaller. I have 3 more weeks before my next appointment, and I'm wondering if he is growing like he should be. Was Charlette average at 20 weeks or was she already smaller? Thanks for putting up this blog, it's helpful to hear peoples progress that are a little farther along, gives me an idea of what to expect.
~Leah
love4bruno99@yahoo.com

dh said...
This comment has been removed by the author.
dh said...

Hi Leah,

Congratulations on expecting a new baby. That is great to hear that your little one was right on target at 20 weeks. Is this your first? Do you know whether you are having a boy or girl?

Our first ultrasound to measure growth was at 16 weeks. At that point she was a little small, measuring only a few days behind average babies for her gestational age. At 24 weeks, she was 1 week 3 days behind. At 27 weeks, she was only 4 days behind. At 30 weeks, she was one day ahead. And finally, at 33 weeks about a week behind. At each of her growth scans she has been at the 11th percentile or below for her gestational age.

Our doctors have said that it is typical for babies with gastroschisis to be growth restricted (IUGR.) Because our daughter was labeled IUGR, they began twice weekly non-stress tests (NST's) at 28 weeks to monitor her heartrate, check blood flow through the umbilical cord (dopplers), and check amniotic fluid levels (AFI.)

We are scheduled to be induced on August 18th, but that is subject to change based on how our daughter is growing.

I wish you and your little one all the best. I know what a difficult experience this can be. For us, there have been many ups and down along with many days and nights consumed with worry about the difficult road ahead.

Have your doctors shared the extent of your babies gastroschisis? Do you know the size of the defect (ie. small, medium, or large sized hole in the abdomen)? I am surprised that your ultrasounds are spaced so far apart. I imagine it has been difficult to wait so long without any news about how your baby is doing? I hope this helps. Please feel free to ask any questions anytime and please keep us updated on how your baby is progressing.

Best,
Ashley

    Emma's Birthday

    Emma's Birthday

    Ava's Birthday

    Ava's Birthday