Dec 20, 2008

4 lbs, 5 oz, 6 weeks to go!

At our biweekly ultrasound Davis measured in at 4 lbs, 5 oz. and everything is still looking pretty stable. The ultrasound technician couldn't believe how much HAIR Davis has. I guess he takes after his mother- I wonder if it will be curly! We got some good news- there's no evidence of hydrops (excess fluid that could trigger labor) and the intestines still appear to be all that has herniated. We're coming down the home stretch... only around 6 more weeks until Davis' birthday! Dr. Coulson recommends we go to Duke a bit sooner than that- around a month from now just to be safe, so that's the plan. 

When we knew we'd have to deliver away from home, I was worried about where we would stay and how we could make those arrangements. Then we found Jes and the amazing Parker-Reese Foundation. Check them out at www.parkerreesefoundation.com. They are absolute angels that have lifted a tremendous burden from us in offering a home away from home. I can't even begin to say how incredible this foundation is, only that I hope I am in the position to one day help someone the way they are helping us. Thanks Jes & Ashley :)

Another CDH family needs your prayers. Yesterday, Davida's beautiful son Luke lost his long fight. Davida is a wonderful mother who gave Luke a lifetime of love in the months she had with him. My heart has been so heavy for her today. Please pray that she & her family are able to find peace. 


Dec 17, 2008

Awareness

Even after Davis was diagnosed, I didn't understand the big deal about awareness. The words "congenital diaphragmatic hernia" alone tend to make people's eyes glaze over, and it's not the easiest sickness to explain. People hear "hernia" and assume it's no big deal. It felt like such a chore to educate anyone who happened to ask. I just figured the less I said about it, the better. Other moms whose children are battling CDH were busy writing proclamations to the governors of their respective states to get March 31 declared Congenital Diaphragmatic Hernia Awareness Day, urging their friends and family to wear turquoise ribbons in honor of the day. I didn't see the point. Raising awareness seemed exhausting, and it wouldn't make Davis even a little bit better. 

Then, the other night, I was having dinner before one of Michael's gigs. We live in a small town, and word gets around fast. We ran into one of my mother's old acquaintances and talked about a couple of things before the woman got around to asking about Davis. "Oh, that's right," she said, "you've got that WEIRD baby." 

I wish I could say I had a witty retort that put this woman squarely in her place, but I didn't (even though I thought of several after the fact). Weird baby? I know she didn't mean to be cruel, but I can't find words to say how hurt I was. This woman, albeit tactless, isn't a mean person, and I really tried to just brush it off. Maybe it's pregnancy hormones, but I couldn't help crying the whole way home. I called my mom, which was a mistake, because she wanted to go back to the restaurant and give the woman a piece of her mind. I talked her out of it and thought for a long time about why one woman's tactlessness would get to me the way it did. 

What I came up with is this: Davis is my sweet, innocent boy. He isn't even born yet, and already he has huge fights ahead of him. Most importantly, he has to fight to survive, but after he wins that struggle there will be others, too: the struggle to breathe independently, the struggle to eat on his own, the struggle to catch up to his peers after many long months in the hospital. What upset me about that woman's careless comment is that in the midst of all this, there is also the struggle to be understood. 

Like it or not, we tend to see what we don't understand as strange. Even though CDH is as common as spina bifida and cystic fibrosis, most people haven't ever heard of it. There is the serious PR problem of the name itself, coupled with the fact that until recently relatively few of these babies survived to tell their stories. There aren't many news articles about CDH, and no celebrities are touting the cause- only a few dedicated mothers who work tirelessly online and in their communities. I didn't understand why they went to such lengths, but I do now.

I get it. I will write my letters, wear my ribbons, and tell anyone who wants to know the long story of why a simple thing like a hole in the diaphragm is a life or death matter. As much as I wish it wasn't, CDH is a part of Davis, and he deserves to be understood.

Dec 11, 2008

By Special Request


Some of you asked for pictures of pregnant me. I guess more than one of you are curious as to what I'd look like if I swallowed a beach ball! I've tried to stay away from the camera as much as possible, and I was successful until last Saturday's Christmas Tea. The ladies at work insisted. So, here it is... ask and ye shall receive.

Dec 10, 2008

Davis will be a Blue Devil

After a lot of thought and visiting both hospitals, we've decided Davis will be born at Duke instead of Cincinnati Children's Hospital. A couple of things really swayed our decision- one was the feeling at Duke, which was much more personal and not quite as overwhelmingly large. Another factor was Hope, a nurse & coordinator extraordinaire who has been like an angel to us. Thanks, Hope :)

When we toured Duke, we were able to visualize everything that will happen on the day of Davis' birth. Some of those things were hard to see... ECMO especially. ECMO is a heart/lung bypass machine that is often lifesaving for CDH babies, but it's dangerous and just plain scary. Some of the other CDH moms I've met have really helped ease some of our ECMO jitters, and I suppose it's better to know what to expect now instead of being surprised later, when so much else is going on.

At Duke, we met Carter and his mom, Kellie. Carter is the first CDH baby I'd ever seen, and it was absolutely the best part of our visit. Carter's progress has given us so much hope, and, as Michael's Aunt Linda would say, he's cute as a bug's ear. Check out his blog: www.bradandkellie.blogspot.com.

Right now, the plan is to induce on Sunday, February 1 or Monday, February 2. This is of course assuming he doesn't come earlier. Even though I don't see how I could possibly get any bigger than I am now, I hope that doesn't happen. Davis needs all the time in there he can get!