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.
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