Wednesday, December 23, 2009

Christmas Holidays!

I've been living in a nice denial bubble for the last week or so. My sister and nieces (and brother in law!) are here and we've been doing non-stop Holiday-ing since I got out of the hospital.  It's been awesome. 

Wednesday, December 16, 2009

Still Here

I just saw the resident and he went over the results of the u/s yesterday. Everything was fine, there was no indication of abruptia or anything that indicated that I was in labour at all. He said they think it was one of those random blood pooling things like how you get water retention and vericose veins and stuff and it was pretty normal sounding. The little man is weighing in at the 90% percentile, right on track with where Rachel was at this time! What's with my chubby babies, eh? His head is still small, but yesterday the tech got a much better measurement and it's only 3-4 weeks behind, which is fine. There's clearly a lot of variation in u/s's though since he now weighs nearly a pound more in 4 days, but I like yesterdays report a lot better than Friday's and the tech was very excited about getting good shots, vs Friday's who admitted her angles were bad.

If the on call OB gives me the okay after reading the report then I can come home today.

My sister, brother in law and two nieces are coming home tonight. I haven't met my littlest niece yet and I'm aching to get out of here to see them!!

Tuesday, December 15, 2009

Aw, Crap. In the Hospital!

Yesterday at work, I had sudden unexplained huge bleeding. Out of the blue, with no warning, no pain or cramping, just voila! Unfortunately I was out in Townsend and the nearest hospital is a hick town one in Simcoe that doesn't even have an OB on staff, or a nursery, nevermind a NICU. I was horrified and they seemed equally so when I mentioned that the baby has SB. They did a non-stress test (they listen to his heart and monitor contractions and I push a button whenever he moves) to see how he was doing. We did fine. They frantically called London and had me put in an ambulance for St. Joe's.

I got to St. Joe's without complication and they kept me for a few hours. More NST's, checks on me, an ultrasound to assess the placenta, the fluid, him, and all was fine. BUT they also figured I'm nearly 34 weeks and my body/he may be telling me he needs to come out for some reason they can't determine, so they shot me up with steroids for his lungs, put me on an IV, antibiotics and told me I couldn't eat or drink anything. I was having the most mild contractions you could ever imagine, so they shipped me off to LHSC which is where he needs to be born bc that's where his neurosurgeon is.

...Except his neurosurgeon is out of the country for most of December! And my OB was not working, so I was just praying that this passed. At about 3am they finally took me off all the monitors and decided we were calm and fine. This morning, they did another u/s and then took me off the IV and said I could eat (after 22 hours!). We had a more in depth u/s in the afternoon and they took me from the birthing centre to the antenatal unit (where new mom's and bed rest moms hang out). The last u/s showed nothing new.

What they think is that either I'm having minor placenta abruptia (?) where the placenta starts to separate from me. If that were major, he'd be here right now bc if he's not attached to me he's SOL, but minor is nothing they do anything about. Or, my body was kicking into labour mode. Also, nothing they can do anything about since it stopped.

So, here I am. Waiting for them to tell me I can go home again! I feel absolutely fine and have not been in any pain at all. He has rocked all his tests and has a gorgeous heart beat and has been moving like mad and showing all his breathing motions that mean he'd be alright if born. I'm on bed rest, but more of the take-it-easy kind than the don't-move-at-all kind. I'm hoping it was just a random scare and we'll cruise into January without any further drama!

On a positive note, I've gotten to see a lot of him lately. His nose is completely Jeff's/Cordelia's, he has chubby little cheeks and pouty lips and a nice fuzz of hair on his head. Still definitely a boy! We saw him move his legs around and I've certainly felt it. I also got a good look at his back today with some over-excited residents and the lesion was barely noticeable on u/s (I think they were disappointed, lol!).

Keep praying for us, and cross your fingers that I'm home tomorrow!

Friday, December 11, 2009

Small Head?

We had another ultrasound and OB appointment today. He's measuring on track with everything except his head. It's small. This doesn't make sense to me and is freaking me out a little bit. My OB said it's not a good measurement, but she's obligated to tell me about it anyway. It's 5 weeks behind the rest of him. So now I'm trying not to google microcephaly or whatever this might mean. The forums say that the small head is common in utero. Going to start blocking this one out now since I really don't need anything else to worry about!

One more week of work to go. My replacement is starting on Monday and is going to shadow me all week. I'm getting so excited and nervous. Just this last week, then Christmas, then we're in the home stretch. Still no idea what date - they have to wait until the neuro gets back from her time off to coordinate. That means we won't know until January 4!

Thursday, December 10, 2009

Back Down

Yeah, I'm back into life sucks mode. I was all happy with the MRI results, and then I realized HE HAS SPINA BIFIDA - there's no part of that that can be called 'good'. The fact that there is a defect just sucks ass, no matter how low it may be. And he's coming so soon. The surgeries are coming. It's scary! Anyway, I don't know, I'm fine 75% of the time, but it's back in my mind at all times again. Just everywhere I go something reminds me of it and I can't escape. I am also back to hating all pregnant women and new babies.

Jeff doesn't get why I'm sad all the time. He thinks I should just stop thinking about it. He honestly doesn't think about it! But, he's not living with it 24/7. Men just can never understand what it's like to have a giant scarlet P on your front. People comment on it all the time, he's moving all the time, I feel horrible all the time. There's no stopping the thinking! He has hiccups right now even.

I'm also doing avoiding things and I know it, but I can't stop. The SW emailed me with an email address for another mom. I've had it all week and can't send her an email. I have no idea what to say. I don't know what to ask! Suddenly, I want nothing to do with it. She asked me to call her too, and I haven't.

Anyway, tomorrow we have another u/s and appointment. Hopefully we'll pick a date for his birthday. And we'll find out if he's flipped. I thought he had, but these hiccups are at the top and the girls usually had them at the bottom. Maybe he flipped twice. They'll also look at his ventricles again.


I took my mom to see SYTYCD Canada yesterday at the JLC with a couple of girlfriends for her birthday. So much fun. Nice to do something normal.

Thursday, November 26, 2009


Three big things. One is that I had an MRI today. I'd never seen MRI images or anything before, so I had no idea what to expect, but once again my amazing OB outdid herself. She brought Jeff and I right down to the Doc that was reviewing the images and had him show us and explain everything they see.

It was actually a little bit breath taking. I got to see all of him inside all of me. So incredibly cool. It was almost like peeling my skin off and having a look inside, only less gory. You can see all of his organs and all of my (squished) organs. The placenta is right there. His feet were practically in my bladder. He is gorgeous.

Anyway, he showed us his spine and you could see plain as day how it was all normal up to a spot. He then did a cross section to show us vertebrae by vertebrae and we saw L3, L4, totally normal. Then L5 had some splitting or something going on, but not fully defect-ed. S1 and S2 clearly have the defect and are open. The sort of cool thing was that in cross-sectioning him, my spine is also in the picture and you can compare the two. Seriously, so cool. The Dr's said they don't think L5 is effected, but they can't be 100% sure until he's born. That would be amazing if it wasn't, so cross you fingers and eyes and anything else that he functions lower.

His ventricles (in his brain) are getting a little bit big (with fluid), but there isn't pressure, so they aren't calling it hydrocephalus. They expect them to get bigger, and anticipate a shunt, but not that there will be any problems with it.

The second big thing is the whole induction/c'section debate. All of the OB's at the hospital that my OB presented my case to agreed that an induction would be fine and cause our son no further complications or damage. So, full steam ahead. Then Jeff veto'ed it and my OB said we both have to agree, so it was back to a c/s. Then Jeff changed his mind and said it was up to me. Then (you may have caught), we discovered that our boy is breech again. Back and forth, back and forth. I'm leaning toward a c/s at this point, even if he flips. It's predictable, for the most part. I can plan for it. Even though it still makes me nauseated to think about.

One last exciting thing was finding out about a new spinal nerve re-routing surgery out of China being trialed in the States right now that our son could potentially get when he's 6yo+ that will allow him to have bowel/bladder control. Hopefully, they'll work it out in the next 6 years and it'll be routine by then.

And that's about it. I'm finding it better if I stop reading stuff about SB now. I know what I know, and I'd prefer that our son just teach me what else I need to know. Reading about other kids just leads me to panic about the 'what if's' and best/worst case scenarios. I'm half eager for him to just get here and get on with it, half prefering to make these last weeks drag on forever and not have to deal with it. I'm not sure I'm ready.

Monday, November 16, 2009

Blah blah blah

Having a rough week for some reason. The last neuro and OB appointments are lingering. They didn't even tell me anything new or different, but it's still blah. On Friday I was the discussion at OB rounds or whatever at the hospital - whether they should be rethinking the automatic c/s thing. My OB called today to tell me about it, but I have to call her back tomorrow.  I'm absolutely terrified of a c/s. Why do people choose it??

Anyway, I'm getting huge. I can sometimes feel where he is and identify different body parts. Freaks me out a little. I can feel his back/bum and I just think: this is where it is. Beyond surreal. So strange. I think getting bigger and starting to do things to get ready for him are making it real again on a daily basis. I'm trying to think about it in a good way. Mostly I'm terrified. I'm setting up a meeting with a social worker. It feels like the last step in admitting things, for some reason. She's at TVCC and it will mean I'm officially a client there, not an employee or volunteer.

I found out about a new surgery that they've been doing regularly in China and starting more over in North America. It sort of reroutes the nerves in the spine that are needed for bowel/bladder control. He wouldn't be able to get it until he's six, but it would mean more than just social continence. He could actually have control. That would take him so much further toward 'normal', especially from a peers-perspective. I just hope he'll be eligible and that it would work. So far away though, who knows what could happen before then!

Sunday, November 8, 2009

Gorgeous Surprise

My mom surprised me with a painting today. I absolutely love it. So timely. My mom is awesome.

Friday, November 6, 2009

Another OB Update

I had a neurosurgeon and an OB appointment this week with another ultrasound. The baby looks fine still. He still has some of the lemon head thing happening, but it should go away. No problems with his feet. We got a good look at them moving around and I could sure feel it. He's flipped head down, so his feet are right under my ribs. Unfortunately, so was his bum, so still wasn't a fabulous look at his back. The little stinker wants to keep secrets.

They looked to see if hydrocephalus was developing yet. His ventricles are measuring 9mm. Normal goes up to 1cm, so he's at the high end, but still normal range. It's just a matter of time though. It sounded like my OB was anticipating seeing it develop soon.

As for the lesion, once again they were saying sacral. For some reason, the u/s techs keep saying it's lower, but the OB and radiologist who did his diagnosis think it's about L5 (just above sacral). It's the teeniest of differences that could mean a lot for him regarding walking though. Hopefully the MRI at the end of the month will clarify once and for all. There is a little sac on his back, but the word is still that his lesion is small.

That's it.

I'm 28 weeks and I feel huge. I'm so uncomfortable.  I do not like being pregnant!!

Tuesday, November 3, 2009

Neuro Update

We had a neurosurgeon appointment today. We didn't learn anything new about the baby. She explained shunts and what would happen with the baby after he's born and while he's in the hospital, more information about his surgery and what she would be doing. We discussed the pros/cons of an induction vs a c-section. That's about it.

One thing that they are making very clear, both at LHSC and where I work at HHSC is that there is a very strict H1N1 policy for the duration of flu season, which will most likely still be in effect when we are in the hospital. No children under 16 are allowed to visit. Cordelia and Rachel will have to wait until he's home to meet their little brother and they won't be able to visit me while I'm recovering. There is also a very strict 1 visitor per patient rule. For me, that means people can only see me one at a time, not together or with other people. If someone (for example, Jeff) is with me, anyone else will have to wait in the waiting room for him to leave. Same rules apply to the baby. Unfortunately, parents count as visitors, so there is a chance that no one will see him, depending on how willing I am to be separated from him. Truthfully, I am not predicting that I'll be dragged away from him very often especially once he's allowed to be picked up/nursed.
We asked how strict they are going to be about the rules, especially in antenatal and where he is, since the visitor policy always seemed loose after the girls were born. They were adamant that those were the highest susceptible areas with all the vulnerable newborns and would be inforced the tightest. This flu thing sucks.

Saturday, October 31, 2009

Checking In

Things are okay. I'm feeling better all around. I think the best thing for me, baby wise, has been finding blogs of other little kids born with SB. I usually only read up until they're a couple months old, but every single one is the same: panic through pregnancy, then the baby is born and they're just so overwhelmed by the BABY, not the SB, same as it is with any birth. Other than the surgeries. It just keeps reminding me that he'll just be our baby boy first. Everything else, we'll manage. I'm getting antsy to hold him and smell him and just do all of that newborn stuff. He moves like crazy now, all the time.

I've decided to start my mat leave way early this time. My last day will be December 18. I won't have any vacation left after all the days I take off for appointments (nearly 1/week right now), but if/when I come back, I'll have some banked from my year off to get me through the holidays and then I'll start in January either way. I can't wait to be done. Work is such a pain in the ass. And seriously, I have SO MANY appointments! I see my OB every 3 weeks, the neuro every month, now I have to add in Social Work and massage (bc I friggin ache!), then random stuff like glucose testing (routine test for gestational diabetes), an MRI (Nov 26!), my Rh shot, ultrasounds, etc. just means so much time off.
Anyway, I've been busy! The girls are still so delicious though. Cordelia still doesn't talk much. She says a few words, will say things for a day and then never again. Her receptive language is amazing though, little stinker. I think she just likes grunting and playing games with us. Rachel is so so so pysched to be a fairy tonight. She has been to 2 Halloween parties so far and the look on her face when she gets dressed is priceless. I swear, she thinks she really is a fairy. I could just eat her up. The three of us got our HINI shots the other day so we are all set for germs, hopefully. Jeff will have to get his later so that the baby doesn't get sick.

Saturday, October 24, 2009

Sad Family Stuff

Jeff's grandmother passed away today. She had been going downhill for some time, but it's still hard to hear. She was the last of our Grandparents. We'll miss you Gwen.

Tuesday, October 20, 2009

OB Follow Up

I talked to my OB today. She went over the u/s images with the radiologist who wrote the report after the diagnosis. They looked over them all and discussed what they saw. His lesion is right at the level of his pelvic bone, maybe slightly below, but bc of the change in bone structure at that point, it is very hard to see. That's why the u/s techs thought it was lower. It's where lumbar becomes sacral. Upon close inspection, they think it's L5 (the lowest lumbar). No higher than L4, no lower than S1. You can see where in this picture:

She brought up the MRI and said it might give us more answers, make sure of the location. It will also tell us whether the sac is big or small or just a defect. That might give us more info as far as birth plan. Our neurosurgeon has okayed either birth option, depending on what we choose. She is booking the MRI for me.

Sunday, October 18, 2009

His Name

I've decided on his name. Jeff is not agreeing to it, but I know he will. He likes to pretend that he doesn't like it, but he's not officially veto'ing it and I think he secretly loves it as much as I do.

Where We're At

So... for an update. It's been confirmed and confirmed again. And then again. He does have myelomeningocele spina bifida. It's not going away, it wasn't a fluke ultrasound or blood test. I'm going to do my best now to explain what this all means for him and for us, since it's sort of a foreign thing for most people.

At about 24-28 days after conception (about the time the reality of pregnancy is setting in and you start wondering who to tell), the bones that make up the spinal column start to form. They are supposed to form a sort of tube with the spinal nerves all down the middle. What happens with SB (specifically the type our son has) is that the bones don't all form the tube. At some point, they just hang out in a straight line or arch instead of a triangle (which is a really bizarre thing to see on an u/s, let me tell you!). That leaves the nerves to stick out of the column. Then everything forms around the spinal canal, or in his case, doesn't form. He has a hole in his back where the spinal nerves are sticking out in a sort of sac. Because they are hanging out instead of tucked in all snug like they're supposed to, they get damaged by the amniotic fluid. The damage is not repairable and is permanent. And it happens pretty much right off the bat. Where the hole (or lesion, as they call it) is located makes a huge difference. It's like breaking your back. Where ever the 'break' is changes everything. This picture breaks it down with the different things that can be effected.

Basically, where ever the lesion, everything listed below is a write off. So, lower = better.

Our son's lesion is either low lumbar or high sacral. Twice we've been told sacral only. We can go for an MRI, hope he lies still and not up against me too much and try and see exactly where. Or annoy the next u/s tech enough that they actually take the time to count vertebrae and find out for sure, but even knowing where isn't going to tell us much - the nerve damage can go up a bit higher than the lesion point. And the range of functioning is huge. As you can see in the picture, his bladder, bowel, and sexual functioning will be effected. The degree to which his legs are effected is what we don't know. Could be his feet, could be his ankles, calves, knees, quads... It's hard to face the unknown.

The other thing he has is something called Arnold Chiari Malformation 2 (ACII). It's a bit much to get unless you understand brain/brain stem anatomy, but essentially, the nerves hanging out his back pull his brain down the back of his head a bit. It makes for a wonky picture on the u/s that they call 'the fruit basket indicators'. He has a lemon shaped head, instead of a circle. This goes away by the time he's born, I'm told. This is what was flagged in our 20 week u/s as an abnormality, even though the tech couldn't see the lesion. The cerebellum is the part that is pulled down in the back, into a banana shape. The ACII likely won't cause many problems for him, it's pretty rare that it causes huge complications, it just is.

However, there is one more big complication he'll have. He'll likely (85%) develop hydrocephalus at some point. Normally, cerebrospinal fluid flows around the brain and spinal cord and then is reabsorbed into the blood stream. Currently, he has a hole in his back, so the fluid just comes out (which is how they screen you positive on the IPS - the fluid/protein in the amnio gets into mama's blood at unusually high rates. this is also how they know the type of SB, as myelomeningocele is the only type with a big ol' hole in the back). Hydrocephalus is when the body doesn't reabsorb the fluid and it just pools in ventricles in the brain, puts pressure on the skull/brain and gives you a big head. Left untreated, causes brain damage. Many SB babies develop hydrocephalus in utero. It's not as scary for babies to develop hydro as for, say, your or I bc their skulls aren't formed. There is less pressure on the brain, brain damage doesn't happen yet. BUT, better not to have it. Our son doesn't have it yet, his head and ventricles are completely normal. Yay! BUT (big but again)... once they close his back, the fluid will have nowhere to go and hydro will likely develop. If not before then.

Anyway, that big rambly leads me up to his birth. I was told that I'd have to have a c-section to reduce the chance of his sac getting damaged. However, my OB is now arguing this, saying I'm a prime candidate for a vaginal birth if she's ever seen one given that: his sac is small, his head is normal, this is my 3rd baby and the other two were both big headed chubbers. He'll likely be smaller than them, just because. But IF I go that route, I'd have to be induced. Which nearly defeats the purpose, in my opinion. And Jeff and I would have to be 100% convinced that we would never wonder 'what if' regarding the lesion/damage. And his neurosurgeon would have to agree. I'll likely have a c/s, but at least it'll feel like my choice, which helps for some reason.

So, the day he's born, he'll be taken immediately from me, either way, and they'll put stuff on him to protect his back, make sure he's stable and then he'll go for surgery. They'll open the sac, tuck his nerves back in, close the bones, dura, muscle, skin, etc over the hole and patch him up. He has to stay on his stomach and stay still for awhile after that. Then, they wait/watch for hydro. Sometime in the next week, he'll likely get a shunt put in. It's basically a pump/valve that will go into his head, into the ventricles and is attached to a long tube thing that goes into his abdomen. It drains the fluid from his head to his body where it'll be reabsorbed. It's there for life. And has risks of infection, malfunction, blah blah, big scary stuff, but saves his life. Then, after all that fun stuff, I will finally get to bring him home, about 10-ish days after he's born. And basically go into hibernation until spring!
There is an SB clinic at TVCC which includes our neuronurse (who is wonderful), PT, SW, urologist (bc of his bladder/bowel issues), and some other folk. Some get involved with me now, the rest later with him.

What terrifies us is the unknown. We know the details, we get what happens. But I have no idea how much he'll be effected, how his surgeries will go, how his health will be...

It also bothers me that I don't know why this happened. My OB did the whole Good Will Hunting 'It's not your fault' thing with me the other day, which I know, but of course I doubt bc that's what mama's do. She said folic acid only prevents about 75% of cases, and she believes it reduces the degree of SB in the rest, so not taking it would've been potentially worse. Why it happens at all though is a big fat unknown. My new least favorite word!

Friday, October 16, 2009

The OB Appointment

We had another ultrasound and OB appointment today. Have I mentioned that I love my OB? I had her for Rachel and Cordelia, then decided to try out a midwife for this round of things.  On the day of that we found out about our sons diagnosis I saw her in the hallway at the hospital. She said she had seen my chart and knew why I was there and that if things didn't go as we hoped today, I could come back into her care.  A different reaction than the other OB who said that if I decided to keep him, I could go with him. Semantics, but it meant a lot at the time. 

Anyway, things were as good as we could have hoped for. There is still no signs of hydrocephalus - his head is even measuring slightly smaller than his age (rare for my kids!). Although this is good news, it will develop eventually. Just, the longer he goes without it the better for him. Still no club feet.

The tech couldn't say where the lesion was, only that it was really low (in her opinion) and lower than his hip bones. Her words were 'right at the bottom'. Whether that means sacral or lumbar/sacral, we don't know for sure. Keep thinking low thoughts though! The sac on his back (the opening) is also apparently still small, not a big bulgy thing, which is also good. He is currently breech, which makes seeing the lowest part of his back a bit tricky.

Another thing my OB mentioned was me not necessarily needing a c-section. She said I'm a prime candidate for a natural delivery if he flips (although, natural being relative - I'd have to be induced). It's something she is going to talk to our neurosurgeon about and that Jeff and I will have to think about if it is an option.

That's it for another couple of weeks! More wait and see, but at least we made it through one appointment with only positive surprises.

Saturday, October 10, 2009

Awww, the Girls

Silvia and I took the girls to the park for a photo shoot today. They are so gorgeous!

Tuesday, October 6, 2009

The Hard Days

I like to act like this is going well and that I'm positive about the future, but I'm really not. Jeff keeps telling me to think positively.  I can't do it! I'm reading books and reading stuff online and thinking endlessly about my son. At this point, I can either talk about it or I can think about it, but I can't do both at the same time. So, talking to people is fine, but I can pretty much just talk about facts and explain how things are as I know them. I can't talk about how it feels to be here or what's in my head because there just aren't words. I know when a parent gets a diagnosis, it's normal to grieve the 'normal' child they thought they'd have. It's just so so so strange to be actually going through it. It's like someone so close to me died and I'm the only one that knows it. Well, Jeff knows it, but just by the simple fact that this baby is inside me and I've been living with him every second for the last 24 weeks makes it different. Add to that the fact that he's not dead and it's a purely unique thing I never want to go through again.

So... yeah, everything does suck. I don't have a clue how well I'm actually dealing with this. I have moments of optimism where I think it's totally do-able and really, it's just some physical stuff, right? And when I read stuff, I can read it as facts and stuff. But every day or two the reality of this life hits home and I just can't wrap my head around it. Even the online groups horrify me. They all say life is grand with their SB kids, but in the next post they're rhyming off all of the surgeries and intervention things they're doing and I just want to vomit. I am afraid to post bc I feel like the big Debbie Downer who can't get over the diagnosis. Even the days where I make it through without thinking about it and am able to totally block it out, I dream about it.
Don't even get me started on the c-section because I am so not okay with it, which is an odd thing to be freaking out about, in the grand scheme of things. I know 2 other women due on my due date that is no longer my due date bc he'll be born earlier. Seeing them is like a kick in the teeth every single time. And when people don't know and they act all excited about hearing it's a boy and look at me funny when I'm not acting as excited as I should be, it really sucks. I can't fake it. It's not that I'm not excited he's a boy or about him in general, but it's so overshadowed right now. Terrified is a better word. And WHY do so many people have to make comments about 'doesn't matter what sex, so long as the baby is healthy, right?' because I REALLY do not know what to say to that.
The girls are amazing distractions though and they are so incredible in every way that it makes it easy to think that another little creature like them, no matter what his issues, could never be a bad or sad thing. Maybe that's why I was given two total angels first. They are life savers.

Friday, October 2, 2009

Appointments Begin

We met with the neurosurgeon and neuro nurse this past Wednesday and had a whole bunch of questions answered and got some new information. The only really bad news that we heard was that the referral said the lesion was lower lumbar/high sacral. We had previously been told that it's only sacral, so hearing it was higher was not pleasant.

The nurse confirmed from the u/s pictures and the referral that as of 2 weeks ago there were no signs of hydrocephalus or club foot/feet. But the Chiari II Malformation (odd head shape that was flagged in the first ultrasound) is present, which means that hydrocephalus is highly likely, especially since about 85% of kids with SB end up with a shunt. It's just a matter of time, but the later the better. The feet being okay had something to do with the lesion being lower or smaller or that his feet are moving, but I forget exactly what. It just meant something good, so we'll take that!

The nurse was so helpful regarding answering questions regarding what would happen in the surgery and the days after. She explained how I'd be able to breastfeed still, how he'd need to be positioned and held when we're able to do that, whether we'd get to see him (briefly, hopefully) or hold him (not likely) before surgery, and what he'd be doing in the meantime and with whom. Even though my OB is at St. Joseph's, he'll be born at LHSC which is where his surgery/ies will be. If he needs a shunt we'll see about it after his back is closed.

She explained his bowel/bladder stuff. Not fun stuff to hear, but she explained how they would test his abilities and what they'd be looking for while still in hospital. She said that if he's sent home without a catheter it doesn't mean he'll never have one and vice versa. Like his leg functioning, it's all wait and see and nothing we can really predict or do anything about until he's born. She explained how toilet training would differ for him.

She was very optimistic though about his functioning and kept referring to 'kids whose lesions are so low like his' and things like that. It doesn't sound low to us, but she'd know better!

The neurosurgeon herself was also very nice and helpful. They spent over 2 hours with us! Our neuro seemed an awful lot like my OB in mannerisms and personality, which I liked. She has recently come from Sick Kids in Toronto and before that practiced in Europe, where she's from originally. They had never before been asked about banking cord blood (which we thought was weird!), but said they'd search for any research out there being done with SB/stem cells, if there is any, and let us know.

I think that's about all there was. I have an u/s and OB appointment on the 16th, where we'll probably hear that the hydro has started. Or maybe not! We meet with the neuro again at the end of the month. They've also put in a referral to the SB clinic at TVCC, so we'll get connected with them sometime soon.

Jeff and I are doing alright. We've been reading a lot of books, talking to people, and connecting with some other families online (although things are pretty different in the states - they're all gung-ho on the prenatal surgery which I wouldn't do even if it was an option, which it is not). I have found a forum which has been very helpful to read about a whole bunch of other parents' journeys.  It's been a pretty heavy 2.5 weeks, but everyone keeps saying pregnancy is the hardest part and that once he's here and there is less unknown/more adorable baby boy, we'll be just fine. I can't believe he'll be here in 14 weeks or so! Keep him in your prayers in the meantime.

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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