Sunday, September 27, 2009

Mid Pregnancy Crisis

I think I'm losing it! I had a mini-meltdown when I was pregnant with Rachel thinking I had just made the biggest mistake of my life, blah blah. Then with Cordelia when I turned 30, got the dreaded minivan and realized I was soon to be a mother-of-two, I kind of lost it again. Now I'm a little freaked out by the idea of having 3 kids and one with special needs. So, I went a little Britney. I cut my hair off. And then coloured it dark brown. No plans for a tattoo, but at this point, I don't think I should be allowed downtown, just in case. ;)

Tuesday, September 22, 2009

Back to Work

Wow, life really does go on. I emailed work last week to let them know, in the hopes that everyone would know and I wouldn't have to tell people myself. Didn't quite work out that way. The email came through while I was there, in the office with 3 staff.  Hi. 

Working in a children's agency is not a cool thing right now. There seemed to be an over abundance of children with walkers and wheel chairs today.  I spent a lot of time in the bathroom. I'm not sure how to go about telling random people like my client's parents or people I work with that aren't on the need-to-know email list. Acquaintances as well, how do you tell them?  It just doesn't seem to be the sort of thing you announce on facebook.  So far, I'm just not saying anything. It's not a secret, I just can't say it. I hope the people I have told will just tell everyone else for me.

I find I'm quite mad now. I want to kick happy pregnant women. I glare at little boys running around. I am not in a good place.  I hid when I saw someone I know in the grocery store who is due on the same day as me because she looked content and glow-y and I am not.

I also can't handle people telling me stories about ultrasounds being wrong, people with SB where you wouldn't even know it, John Mellancamp has SB dontcha know?  I know they mean well, but it's like a knife stabs everytime you have to explain that this is not going away, it will be something you 'know' and John Mellancamp has a different kind of SB. Le sigh.

Sunday, September 20, 2009

I Need a Name

This boy needs a name!  I am suddenly compelled to name him. I have read that it helps. I have got nothing. Jeff is still stuck on James Jeffrey, which is terrible. For about 5 minutes when I was pregnant with Rachel I had agreed to it if she was a boy. Then we found out that she was a girl. I have never liked Jamie since then! He wanted it for Cordelia, but luckily she is also a girl.  I had been calling him Oscar Allan in my head, but now I have visions of teasing about his garbage can, in the event that he does actually need a wheelchair. Is that a bad thing to think about? I don't know, but the search for a strong, meaningful name has begun...

Friday, September 18, 2009

Life Goes On

We're off to a wedding this weekend. Friends of ours are getting married in Ottawa and there's not really any reason we shouldn't go. Jeff emailed them all to let them know in advance so that the process of informing people didn't have to interfere with the wedding.

I have been googling and googling, naturally. I managed to find a blog written by a family whose daughter was born in January 2008. It's been incredible to read their experience, although a lot of it is different due to them living in the States. I can't find anything Canadian! I've also looked for online forums but there's nothing that's jumping out at me. I must be googling wrong. This feels so odd that it's the most common birth defect and yet I can't find anyone in cyberspace going through it.

The blog talks a lot about a program called MOMS. It's a surgery done on the baby in utero to close their back before their born. They ended up deciding to do it, but then didn't qualify. I don't think I could do it.

Wednesday, September 16, 2009

No Idea What's Next

By some amazing coincidence, I have the week off work.  Yesterday was supposed to be a quick and easy ultrasound followed by the fair with the girls.  That didn't work out.  Today I was supposed to go see U2 in Toronto with my brother. I passed on my ticket. I don't think I can make a 2 hour drive by myself without losing it. No idea what is supposed to be happening now. Sort of feels like everything stopped.

Tuesday, September 15, 2009

The Diagnosis

We found out today that our baby has spina bifida. It's a neural tube defect that is mostly prevented by taking folic acid. Sometimes it just happens though, and apparently we are one of those cases. I'm not so good at explaining what it means yet, but there's an issue with his spine. There's an opening where the nerves are coming through and shouldn't be. We're not sure to what degree or what that will mean for him, but it is low on his spine, which is better, relatively. We won't know about the degree of paralysis or anything more until he's born. All I do know right now is that I'll have to have a c-section to reduce chances of the nerves getting more damaged through birth and he'll have surgery shortly after to cover the area and sort of tuck the nerves back in. He may need a shunt in his brain to reduce swelling if hydrocephalus develops, which is pretty likely.

We found all of this out after receiving a positive screen on the 18week IPS blood test on September 1.  My midwife said that our baby has a 1 in 5 chance of having SB, but not to worry because we didn't meet any of the risk factors and all of that; false positives are so common. We went for an ultrasound 2 days later and the tech couldn't find anything. She said his spine looked fine.  However, the report from the radiologist did flag something with his head. Again, they said it was likely nothing. Just to be safe, I could go for a follow up ultrasound at St. Joe's.

The follow up ultrasound today was actually an all day event today that was likely one of the worst days of our lives. First we met with a counsellor who explained what the odd shaped head comment meant, combined with the positive IPS screen. We didn't realize it then, but she was basically telling us the ultrasound had missed something. They were going to find what they already knew was there. We brushed it off, told her we were there just to confirm that he was fine. After all, we had plans to take the girls to the fair in the afternoon and we couldn't be sitting around the hospital all day - get on with the ultrasound!

Another hour later and the ultrasound happened. I lay there watching the tech make arrow after arrow. By the time she was done, I knew. She left to talk to the doctor. They brought Jeff in. They showed us his spine and explained what they were looking for and that they had found it. Jeff asked how sure he was. The doctor said 99%, but could always account for a miracle. After he was done talking, the tech asked if I wanted to see my baby. I shrugged and said yes. She showed me his face, his body, his arms and legs. My little baby boy.  Then they left and Jeff and I were alone to absorb the news.

2.5 long hours later we met with the 'team' at St. Joe's who delivers the news and what it means. They explained that his lesion was in the sacral area. They said he'd never walk. The quality of life was questioned, his cognitive capabilities were questioned based on the likelihood of hydrocephalus and something Chiari.  They said I was only 21 weeks, I still had options. They said we could have an appointment next week. We said that wasn't an option, what comes next. They hemmed and hawed and finally said we could get referrals to this and that, better to wait until we're sure. Jeff told them to just put in the referrals.

We've told our family, I've emailed my friends. I'm trying not to let the girls know that something is wrong but nothing is right today.
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