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Monday, September 13, 2010

Nothing Like We Imagined (But Life Is Like That)

So here we are.  Brett and I are only about nine weeks from the proposed c-section.  I find myself wondering why I haven't been writing about my pregnancy the whole time.  I guess one reason is I'm not a writer.  Another is that I've been afraid to jinx it.  Another is my propensity to go off on tangents.

But anyway, here we are.  This is probably going to be a long entry due to playing catch up and laying it all out.  Let's just get started then.

Brett and I tried for a long time to conceive our baby, but that's a whole other story.  When we found out we were expecting, we were elated, overjoyed, and a whole host of other happy adjectives.

We were nervous about it, more me than Brett, but we made it through the first trimester and relaxed into the pregnancy, the planning, the reading, and all the daydreaming about our life as a family and our child.

Because I'm 35, we got blood draws for a few weeks to make sure things were going ok.  We never really gave them another thought though.  At 17 weeks we went in to the big ultrasound wanting to find out the gender of our baby.  The tech did some ultrasound and told us it was a boy as she printed out pictures for us. We were just over the moon happy.  Then another tech came in and did more ultrasound, then another.  Then the doctor came in to look at the ultrasound.  Brett and I looked at each other and knew something wasn't quite right, but we kept it to ourselves.

We were taken to a consultation room, like usual, to wait for the doctor.  We looked at our pictures and talked a little, and wondered what all that was about.  Then the doctor joined us with the genetic counselor.  Brett got up and got a box of tissues, my eyes were wide and I didn't know what to say, I couldn't think clearly, but it was plain that things were about to go sideways.  When the doctor spoke, she started with, "I want you all to know that this is not your fault, and you didn't do anything to cause this."  There were literally bells going off in my head, was my baby dying, what was happening to him, why was this happening, can I run out of the room and escape this... all this was in her pause for breath.  She continued, "The baby has Spina Bifida."  Brett and I immediately clung to each other and sobbed, I had skirted over the pages on this in my pregnancy books because it's linked to folic acid.  I'd been taking that in a prenatal since 2007.  We still knew it was a birth defect, and it was serious.  We composed ourselves and the doctor started to talk again.

Things got blurry at that point, and I think we finished that box of tissue.  There was a lot of information and words like shunt, surgery, lesion, brain malformations, scary... scary words, and they washed over me in cold waves of disbelief.  We left there and I felt wooden, like I was carrying a wounded dove, like I wouldn't survive this.  Brett and I retreated to our bed and kind of set up camp there.  We called our parents, my sister and shared our news and tears.  We read all the information they gave us, we called about insurance and basically did anything we could do in a powerless situation.

That was ten weeks ago, almost 11, and here we are getting ready to welcome our baby into the world.  The love and support we've gotten from the family and friends who know about this has been overwhelming and we feel so very blessed.  I've met several people with happy, thriving children in an online SB group that has been a wealth of support and information.  We've gotten a lot of answers since then, but there are still a lot of questions.  We know that if our baby boy, whose name is Kemper, has good lung functioning at 37 weeks, he'll be delivered by c-section at Duke Hospital.  If not, we wait a week.  We know that the defect on his spine is upper sacral and very small which is just about the best thing we could have hoped for.  We know he will have surgery the day after he's born to close the opening on his spine and he'll be in the NICU for a while.  We also know about finding faith, having hope, loving this baby more than we knew possible, and finding peace with his diagnosis.  The rest we can work out later.

We do not want Kemper to be defined by a diagnosis.  We want congratulations on our son, not condolences on his condition.  This blog is here for information, for an outlet, so that we can share our experience with you and maybe we all learn something.  I know Spina Bifida is the most common serious birth defect, but I never knew anyone that had it, so maybe this will be a source for people who need it.  Who knows about any of that.  The important thing is, Brett and I are having a baby, we're starting a family, and we couldn't be more excited.