First Visit to IWK (excerpt from a note to a friend, I'm sorry, I just don't have it in me anymore to go through it fresh again)

Friday, after we had received the news from the QEH on Monday that there were abnormalities from the ultrasound and that we needed consultation at IWK, we went over. We didn't know what to expect, what was going to happen, or how it was going to play out, and we packed to stay for a couple of days, because, worse case scenario was that it wasn't going to be a pleasant visit, and we were going to need to stay for longer than just a consult. 


     The appointment went as well as could be expected, the doctors and specialists treated us so much better than they did here, and were so informative and caring. What a difference it all made! When we were going in, I made it clear that my Husband would be going in with me, and I asked politely if she'd be able to tell us the sex, which I had to explain to her was a big no-no in PEI. She just smiled, shook her head at backwards PEI healthcare, and said it wouldn't be a problem. She was so good, knowledgeable, and comforting. She told us she used to catch babies before she got too old for it, but still wanted to work with them, so she became an ultrasound specialist. She was a specialist, and the Dr. who came in to do the diagnosis was a specialist, and the other Dr. who came in to just watch, chat, and tell us what part he would play was a specialist too. They confirmed the diagnosis of Spina Bifida and where it is on the spinal column (very very low), and talked to us about what it means for the baby, and what expectations we can have for him (him!).
    I cried when the nurse/ultrasound specialist told us. I was expecting a girl, I don't know why, and this threw me for a loop. A happy loop! The initial prognosis is good! He should be able to walk fairly normally, possibly with ankle braces if he needs them, and may have the need for a shunt, which is very common with this condition (and apparently many others as well). I have a niece already with a shunt, and she's just fine, so we're not too scared about that. There may be some other nerve control issues, but it's pretty hard to predict, and they'll be things that can be managed. His brain looks normal at this point, and his heart is absolutely average, so those are great signs. Because he'll need surgery so soon after birth to re-close the nerves, it's likely that I'll have to go over there to deliver, and then spend extra time after for recovery (about 15 days) but honestly, I'm starting to be really glad about that too. I'm quickly developing a bias against PEI's hospital, I'm sorry to say, but it's deserved. 
     To end off the day, the doctor chased us on our way out the hospital, he'd gotten hold of another dr. who'd been in surgery, but was out and willing to talk to us. So! We also got to see the neo-natal neurosurgeon, who made time to see us as soon as he got out of surgery, and he's one of the sweetest doctors I've ever met. I know we'll be in good hands there. He talked to us for nearly 2 hours, answered all the questions he could, and gave us educated responses on the things that just can't be answered. We'll be back in a month to check back with them again.

Second IWK visit!

     This actually happened April 8th, so my appologies, my time lines are all squwee, but I'll try and get them straight.


     The second appointment went well, all the things they were looking for (complications, abnormalities) haven't developed at this stage! They re-confirmed the location of the myelomeningocele (S2 level, really low), there's no sign of hydrocephali (fluid build up on the brain) and his legs, feet and spine are all straight. Some of these things might develop, which is fine, they're all treatable, but since they're not there now, we're focusing on being positive and having it stay that way. He moves around like crazy and kicks me constantly, so it takes longer to get pictures of him, but you're not going to hear me complain about that. They told us they don't want to see us for another 6 weeks, so I'm really going with that's a good sign. We took some time this time to visit with my Husbands sister and nieces, which was lovely! We got to the mall, I bought a new purse, and it was a much more pleasant trip than the last one. Mind you, that wouldn't have been difficult. We're past the finding out stage now, more in the planning, how are we going to manage things, and what's the game plan stage. We still don't have a game plan, but at least we can think about having one!

     My blood platelets have dropped significantly (low range of normal is 200-150, I'm 43), but they'll be able to treat for that right before I have him to bring them back up temporarily, so that should get me through delivery, and then they should come back up after on their own. The doctor decided it's just a re-occurrence of the ITP I had as a child, so that's a relief that we're not looking for anything else. It didn't kill me then, so I figure it won't kill me now!