Thursday, November 11, 2010

One Week to Baby!

Time has flown by, just flown.  I feel like I've been pregnant for about 20 minutes.  Well, when I'm not thinking about all the lack of sleep and discomfort, you know.  I'm so excited.  My husband is so excited.  We sit together and talk about what he'll look like, how we think he'll do through surgery, our worries, and how we can't wait to hold him. We're packing and tying up last minute details.  We're trying to get everything straight with our families and friends that want to be there for us.

I can't believe I have to say goodbye to my belly already.  He's safe and well cared for in there, except for the occasional fast food meal, and we're both pretty cool with him hanging out where he is.  I wonder if I'll miss the random pokes to the ribs or those jabs to the bladder.  Right now I know he's not too hot or too cold, he's not hungry, I'm sure of that one.  But all the guessing and trial and error starts soon, and while I can't wait to hear his voice, I know I'll want to fix whatever is making him cry, and I'll have a list of things to tick off trying to figure it out.  I am a novice, it will be confusing, but we'll figure it out.

We could not have been more blessed with support for this birth, my husband's parents, his brother, and my father will all be there for us.  If any of them are fearful or discouraged by Kemper's Spina Bifida, you would never know it.  That's what we need right now.  People that can support us through this, then ask questions and share concerns.  I have some really wonderful friends that will be there too, bringing food, running errands, and just being there for us.  I feel so lucky to have so much love and support.

I wish though, that my Mom were alive to share this with, that she'd been able to be at mine and my sister's weddings, the births of my sister's children, to meet my wonderful husband whom she would just adore.  For my family to have known her gentleness, to hear her colorful stories about growing up on a farm, to hear her laugh... would have been wonderful.  I know she is watching over me and my husband, I know she won't miss a thing the day Kemper is born.  When Brett proposed to me so long ago, he took me to the beach where my Mom's ashes are scattered.  It was overcast and drizzling and I remember sitting in the sand just kind of talking to her.  A few minutes later the clouds opened up right above us and the sun came shining down just around us.  I felt like she was saying "Hi!  I am so happy you're about to marry this boy and I love you!"  It was a powerful moment for both me and my husband.  We'll be taking Kemper to that beach as soon as we can.

My next blog will of course, be all about the new baby.  Pictures included!!  So thank you all for keeping up with me, for your positivity, and well wishes.  I look forward to showing off my baby boy.

Saturday, October 23, 2010

My Fears Rear Their Ugly Heads

Although my feelings about Kemper remain the same, peaceful, joyous, and that all will be right as rain, my own fears are gnawing a bit.  I suppose part of that is some recent upheaval in what was a very serene setting... my online Spina Bifida Kids group.

I know that some people would choose to abort their baby when faced with a diagnosis like Spina Bifida.  I can't say I agree with that, as it was never something we considered for my husband and I, but I am pro-choice and can't be a hypocrite.  The thing about this is, a very confused and misguided woman continually asked us over and over about aborting.  Everyone on that board chose to keep their baby, there are pictures and personal posts about their children and all the wonderful things they've accomplished.  No matter what was said to this woman, she argued statistics on termination, on the burden or sacrifices of caring for a child who has Spina Bifida.  It's a personal insult to the women who are proud of their kids to continually argue for termination.  She has a decision to make, she doesn't need to justify it to anyone.

Being pregnant with a baby with Spina Bifida too, I tried to be compassionate.  Everyone tried to quell her fears with personal stories of their childrens' successes and what wonderful kids they are.  She countered that she'd received email from women who wished they'd terminated.  She made a poll on the internet so complete strangers could vote for whether she should terminate or not.  She lurks the board and jumps in occasionally, and she posts negative things on her blog about our group.  I had to stop visiting her blog and chose not to keep up with her, just to pray for her.

Why am I even bringing this up?  Well, it made me think about what my family faces... everyone feels entitled not only to their opinions, but to shove them down your throat it seems.  I'm afraid of my child being stared at, talked to like he's a thing, or ignored.  I'm afraid that we'll go to doctors who will not push for progress but resign my child to wherever he is because he has Spina Bifida.  I'm afraid that my temper will get the better of me and I will not be a "good will ambassador" for awareness, but a frothing at the mouth she-devil when faced with a perceived slight on my child.  I'm afraid that I will become hyper-sensitive, lose my sense of humor, and go the route of the uber politically correct.  

Right now these are my biggest fears.  I don't even know what's going to happen with Kemper because every child with Spina Bifida is different.  We know he will walk, with or without braces, but that's all that we've been told for sure.  I will never view caring for him as a sacrifice or burden.  If you feel that way about your kid, it's not because of disabilities, it's because you feel that way about your kid.  Whenever someone tells me how hard it's going to be, my blood boils.  They don't know that.  Will the NICU be hard?  Heck yes!  Will we get through it?  Yes!  And anything we have to do to take care of him will just be that, taking care of our baby!  

With his delivery being so close, I'm worried about how I'm going to do!  That's kind of nuts, isn't it?  I know he's going to be fine, I have more faith in that than ever, but I suppose I need to find some faith in myself.  That I can be calm, graceful and still get my point across.  Wish me luck!

Thursday, September 30, 2010

Another Bump in the Road, but What a Ride!

Here we are at 30 weeks!  It's incredible how fast time has passed yet the journey still feels so long.  We've found out a few things over the last few weeks and as usual, it's good and not so good.

Luckily, everything is great with Kemper.  At ultrasound today they said the ventricles in his brain are holding steady, no hydrocephalus!  All that means is excessive fluid on his brain that could necessitate him needing a shunt placed to drain the extra fluid when he's born.  But... so far so good.  It could change after his closure surgery, but we're hoping and praying it doesn't.  He also weighs 3lbs and 15oz!  He's getting bigger fast and I can certainly feel it!

Then there's the extra amniotic fluid around him.  That's due to my very recent diagnosis with gestational diabetes.  I bombed the glucose test pretty spectacularly.  So, now in order to control the diabetes and prevent negative effects on Kemper and myself, I'm testing my blood glucose levels 4 times a day and following a diabetes diet closely.  Not anyone's idea of fun, but as my husband says, "You can do anything for a set amount of time."  He's right, and that amount of time is growing very short!  We're only 7 weeks from the proposed delivery.  

Sadly along with the gestational diabetes and how far along the pregnancy will be, I was advised not to make a long car trip coming up, and I'm saddened by that.  I was headed to my Grandmother's 98th birthday celebration.  I haven't seen her in a long time and there was a lot of my family attending also that has rare opportunity to see each other.  We are already planning a trip early next year to visit her with the baby and while it won't be on her birthday, I'm really looking forward to seeing her.

So I guess we're in a count down and feeling more and more ready.  His nursery is almost done, the baby shower is coming up, the bag isn't quite packed but we're thinking about it!  All these things to prepare for our baby to come home.  Despite everything, it's much like anyone else would be preparing for their child and that is the defining characteristic, not the Spina Bifida.  Our joy is enormous and we want to share it.

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.