Things are Moving

So I'm finally seeing the high risk clinic at Mt Sinai on Monday and hopefully get some answers about what the plan is for the rest of the pregnancy.
I had an ultrasound done and it showed no hydocephalus (great!) but I don't really trust what the tech saw, considering it said he couldn't see an open spina bifida - which we KNOW is there! And the head is small, which freaks me out a bit, but we'll keep watching it. But no hydro - which is what we really wanted to find out. During the ultrasound we could see his mouth opening and closing - I think Nickolas and Katheryn have been 'talking' already! He didn't move that much during the ultrasound, but as soon as I was outside he was kicking up a storm - this kid moves around ALL the time! When ever I'm awake he is usually moving and letting me know he's there. Hopefully when he's out he'll sleep a bit.

It's hard not knowing, not knowing how bad things are, or how good. Not knowing and not seeing our little boy, just imaging the worst and hoping its not that bad. Kyle and I have different perspectives about the spina bifida and the ultrasounds. He hopes for the best, I plan for the worst. So we compliment each other nicely. I am just so afraid of getting my hopes up, that things won't be as bad as what I've read.

We are trying to get the baby room ready. Slowly but surely things are progressing, we are emptying out the room and we'll start painting in a month or so. Katheryn thinks its great that she can move around the computer room a bit more. She loves running around upstairs and runs everywhere now. We just walk over to daycare in the morning instead of putting her in her stroller.
Oh are we going to have our hands full soon!

Holding Pattern

28 weeks now. It seems to be going to quickly and so slowly at the same time. It seems like we are in a holding pattern right now. When we found out about the spina bifida everything moved so fast, but now nothing.
I've kept going to Dr Samra, but I know that I'll starting going to a specialist at Mt Sinai soon, but I don't know when or who. We are kinda of stuck. We go for another ultrasound this week to look/check for hydrocephalus ("water on the brain") which is the next big thing we need to worry about. In July it hadn't developed yet, but can develop very quickly at any time (or not at all). It would effect when we expect to deliver. I don't know if we should have done ultrasounds yet, but if it was there and was large - we aren't going to deliver at 26 weeks, or 28 weeks either.

I am always amazed when people say how brave we are being. It doesn't seem like we are being brave. We aren't doing anything especially courageous, we are dealing with what life has sent us. We are fighting for and loving our child.

So I don't actually have much more news. Nickolas moves around ALL the TIME! (I'm not complaining) and everywhere. He is probably breech, or flipping back and forth, up and down.

We are going to start on the nursery soon. I have plans and paint chips, but of course it is still filled with our computer room crap. But we have time (hopefully), 28 weeks is a big milestone to meet, next is 32 weeks, but of course I still 39 weeks in my head. And that is what my timeline for my research project states (yes I'm trying to finish my Masters before the baby comes - I know I'm crazy).

Katheryn has become our next artist. Drawing all over paper, magnets, floors, herself, her parents - not the walls (yet). And Kyle is just waiting for her to hit 20 lbs so she can go in her new car -big girl - seat.
She is such a monkey!

Welcome to Holland

I wanted to share this posting that I found really helped (and yes it made me cry).

Welcome to Holland

By Emily Perl Kingsley, 1987

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland. "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills – and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy ... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you many never be free to enjoy the very special, the very lovely things about Holland.

My first blog... ever!
I decided to start this blog to keep everyone up to date on what is going on with our expanding family. I've also found it helpful to read about other blogs of people who are experiencing the same thing we are.

Yes the spina bifida family blog.

Kyle, and I (and Katheryn) are expecting a son (and brother) in November. We found out about 3 weeks ago that our Nickolas will be born with spina bifida, a myelominengecele, the bad one. The worst day of my life, our baby boy has a congenital, non-treatable, disabilitating problem. We were told (at 21 weeks) that in Ontario we have until 24 weeks to terminate. What?! This is the baby that I can feel moving all the time! What are we looking at here.

A little bit about spina bifida first - when the baby is forming, the spine did not close all the way, this means that there is a space in the spine in which the spinal cord comes out (the lesion) and forms a pocket in the back. The nerves are damaged from this point and below, the lower the lesion the better the outcome.
Nickolas' lesion is in the lower lumbar/upper sacrum area - its not the worst, its not the best area to have a problem. Hopefully we are looking at needing braces/crutches to walk. But we won't know for sure until he is born.

We talked with a neonatal neurosurgeon at Sick Kids, a pediatric rehab doctor at Bloorview who runs the spina bifida clinic. We had an MRI, a level II ultrasound and an amniocentesis. Pretty much all the tests/visits we were offered. I'm posting the picture of the MRI and you can see where the lesion is - the white part by the bum (its supposed to be all black).

Otherwise we are hoping for a happy normal baby who will be born with a physical disability. And yes there will be other difficulties and health problems, but this is our SON. We wouldn't ask for this, but he is here, he is ours, and we can work through this.

I think this is it for now. I'll keep you posted as things are developing