So how ya been?

Ok. Here it is. The big wrap up of the past couple of months. As you know, we had a baby. Alex. Hi Alex! Alex has Spina Bifida. Oh well, not much can be done about that, and that's a reality that we've become comfortable with. This fact is made much more digestible by how absolutely amazing Alex is. Legs kick. Feet flex. Toes wiggle. His brain and spinal cord is healthy, developing normally at this point, and will hopefully continue to do so. He's awesome. Yes, spending two and a half months in the hospital with two spinal surgeries, plenty of IV's and antibiotics, feeling unbelievably lonely and just alone (these are two very separate things I've learned), worried over C driving back and forth and not falling asleep and dying, etc: SUCKED. At the same time, I'm so very aware of how lucky we were to be able to have the IWK to go to, the amazing people who work there, and the support of my family and all back home who made it possible for us to actually survive this intact.


Really, truly, we're pretty damn lucky all around.

We had our first Spina Bifida Clinic in early October: what a loooong day. I'm glad I was able to convince those involved to go over the night before and spend the night at a hotel in order to make it for the next day. Plus I got to shop. Cause that's important. MRI, Ultrasound, X-ray, Uro-dynamics, Orthopedics, Neurosurgery...the list went on. Lots of consults, lots of tests. Lots of positives from the doctors reading the reports, one or two things to keep an eye on, and overall not too much to worry about. Still on the bright side, they don't want to see us for 6 months!! Usually I'm pretty sure it's an every 3 months for the first year +, then they slow down a bit. Yay for us!

So; while a little bit of reflux to his left kidney is something we'll need to take a low dose antibiotics for, we're doing very well.



We laugh
We smile
We sing
We get licked by the dog
We wail
We scream
We get woken up by the chicks that ridiculous me decided to try and save so they live in the house.




I realize that's something I have to work on. I'm working on it, really!

Not forgotten, just really really busy...

Apparently having a three month old will do that to you.

Seriously though, would you rather be looking at that face, or sitting in front of a computer. Even if he's kicking you in the arm so hard he leaves bruises...

9 days later...

    And we're still in the hospital. Alexanders' surgery went well, and the new incision line looks even neater and tidier than the last one! Unfortunately we're still here since he's sprung another leak. Maybe he'll become a plumber someday, fix his own leaks. Ha! I'm funny! Not so much? You'll have to forgive me, I've been in the hospital a lot lately. I know others have been here longer, but man. I don't get out much.

    Blood tests indicated that Alex had some inflammation and elevated white blood cell counts, so that indicated some infection, which Dr. W was able to find and clean up when he went in for surgery, right along his suture line internally. Not unheard of, and as the Dr. liked to say, it's not a step backwards, it's just a hiccup. The cultures that they took and grew in the lab indicated two different organisms were present, one was an e-coli (not surprising considering where the surgical site is) and the other was a ubiquitous skin bacteria, so they put him on two different iv antibiotics. Yay, another head iv! Good lord, how I hate IV's. I hate them on me, I hate them on him, I hate them in general. They obviously have their benefits, and he really needed those antibiotics to get in there and do their job, but they suck.

    Every time he gets a new one, in a different spot, I leave the room and let Charles take care of it. Call me chicken if you'd like, but I can't stand watching someone (however good and sweet they are, and they all are here) shave a bald spot on his already patchy head, poke and prod him, and stick another needle in him while he's screaming. Or tie off his tiny little arm in an effort to get it in his hand, or his foot. Now, to be honest, he's screaming because they're holding him down and not cuddling him, not because they're really hurting him. But I can't watch it. I can't watch when they put one in me either. There's just nothing I can do for him. Then he's tethered to a beeping machine that keeps sounding off alarms, tubes that twist and kink, and don't get me started on the constant vigilance required to keep little fingers from finding a loop in that tubing and pulling it out all on his own. He's very hard to maneuver and cuddle with all the cables as well.

   That being said, he's been off the iv for two days now! which makes my life sooooo much easier. It would only be easier if they'd send us home! Ha! Anyone? No? Okay.

Home again, then back again, jiggity jig.

It was great to get home, but Sunday evening we notice that Alexanders incision had started to leak a little bit, so back to the hospital we went, to the QEH this time. It was fine, and not unexpected, but man, it was really the last thing I wanted to see. I'm so glad that Charles was there when I changed that diaper. I had a small freak out, but he kept me under control, and we got shit together and off we went. They took us in VERY quickly (it will never happen again, and they had a full ER waiting room, pretty sure everyone there hated us) they admitted us, then they restarted his antibiotics. We stayed for two days in the Pediatrics ward, and they sent us over to IWK again in the ambulance. My first ambulance ride ever, but thankfully not very eventful, just long and more precautionary than anything else. 

So! That's where we are now, we're scheduled for more surgery today to see if the Doctor can fix the leak, and hopefully it will all go as well as the first one. If all goes well, hopefully we'll be heading home again in a week after recovery and more antibiotics. It's been a really long two weeks so far, but we're still doing well all things considered, and keeping spirits up. The staff here is wonderful and so good to us.

Progress, and out of the NICU!

The day after he was born, less than 24 hrs later, Alexander had his surgery as scheduled after having an MRI, and both went well! His Doctors were all very pleased with him. The myelomeningocele repair surgery went as best as can be hoped for, and we then spent some time in the NICU at the IWK for all his antibiotics and follow ups, then we transitioned into pediatrics care for observation and to let us get the chance to learn how to care for him and get settled with him. 

Chillin in his NICU bassinet. This sweet ride had wheels, a cabinet underneath to store all his diaper accouterments in, and the bed actually slid over to open up space to change diapers on the top beneath it. Unfortunately, it doesn't go home with him.

 His range of motion is really great. Feet and legs are kicking, he has almost normal muscle tone (we might have some work on the lower calve muscles down the road, whatev) and he wiggles his toes all on his own. We're so lucky, I don't know how it's possible, but we're so pleased and thanking our lucky stars; there's no signs of hydrocephalus, he's going to the bathroom just fine on his own (and often), and they sent us home last Friday.

Because it's cold, all men require toques. His is just a little soft. And little. And white. You know how I feel about white.

Happy Birthday Alexander Patrick MacKenzie!!!

We finally had Alexander on Wednesday, July 27th at 10:49pm after 4 days of induction! He just felt like taking his time making his entrance I guess. He was just over 19 inches long, 7 lbs 15 oz, toes wiggling, feet kicking, and pretty darn noisy right from the get go! He's wonderful, and I'm totally in love with him.

4 days of preparation, 17 minutes of pushing. When I get down to business, I don't waste time. Also, epidurals were a wonderful addition to my life.

Gonna end up getting dragged out kicking and screaming.

So yeah. That last post was an angry one. I'm over it. I got everything finished up that I wanted to get finished up, got it all as organized as I could, and I've let it go. Walked away! That was a nice feeling, although I still sometimes want to just check in and see how it's all holding together, because I'm worried that it's not, and that things are getting missed, and it would be really nice to get my ROE so I can claim EI, but STOP! I need to focus on more important things! We're here at the IWK hospital, we've been here for a full 10 days, and they're taking pretty good care of me, and I don't have to worry about going into false labor and rushing into the hospital and having them tell me it's false and to go home. I'm already here, they can't kick me out! Ha! Really, there haven't been any changes at all. Well, other than the plan.

The Plan:

Original plan: scheduled c-section, Friday July 22nd, followed by babies surgery, and recovery.

Plan two: Who needs a c-section? Not you if you don't want it! Ok, we'll just induce you instead on the 22nd, and if everything goes ok, you can have him naturally, and depending on your platelets, maybe you'll even have the options of pain meds!

Plan three: Oh yeah, everyone goes home on the weekends, that means we'd have to call someone in on a Saturday or Sunday if you don't deliver right away, and so-and-so is on vacation, that's right! Ok, lets move induction to Sunday, then hopefully you'll deliver on Monday or something like that. Remember: Every day the baby bakes in there is a bonus!

Plan four: Hmm, your blood pressure has crept up to the low range of the high category, lets look into reasons for that, if such-and-such are showing up in your results, we'll induce sooner, and that'll take away the extra risks. So maybe sooner rather than later!

Plan five: Nah, maybe we're not so concerned. We'll switch to using a different piece of equipment that gives a lower bp reading, and just keep an eye on it. And bed rest for you. That'll keep your pressure down. Sunday it is!

I'm totally commiserating with largely pregnant women who have the advantage of medical services across the world. I know why they often get the rep of being "crazy pregnant woman". It's because they're driven crazy by the people surrounding them. They can tell enough to monitor every little flux, catch every little flutter, and therefore take every little precaution. I'm grateful for it all, I really am, but man, no wonder blood pressure goes up!!! Far too many things to now worry about. I'm very happy that my risk of dying in childbirth is significantly decreased from like the 1800's, it just seems a bit needlessly stressful.

I'll be honest, this isn't a ride I've enjoyed. Some women do, others don't, I guess I'll fall squarely in the latter category. It's not been comfortable, it's been stressful, there was the whole risk of spontaneous unstoppable bleeding,  I don't think my pelvis will ever stop aching, I miss my husband and my animals terribly and I'm wondering if my feet will ever look like my feet again. But he's worth it. Of course he is. So will that beer be I'm going to have when I get back home*. You know, in between feedings.

*(Yes, I fully feel that the baby is better than beer. But I've had beer before, and it's quite nice. I've never had a baby.)

Ok, so that one was a little bit harder than I was expecting it to be....

     So there isn't really anything here that constitutes a Lamaze class, but there are pre-natal classes put on by PEI public health. We went to the first one, Husband and I, but skipped out on the second one since it was the day after we'd had the diagnosis of sb for the baby. No need to explain why I didn't really want to attend that class right?

    Anyway, last night was the breastfeeding class. Since I intend to do whatever I can humanly do to exercise this natural ability for all the benefits it totes, as well as my guilt trip for the pregnancy not ending in me pushing him out in what would no doubt be the Most Painful Experience Of My Life, I planned on attending and learning what I could. Husband offered to try and find out if his B-in-L would be able to help his dad milk, but really, it was going to be a hassle, so I decided that I could take this one on my own.

   I shouldn't have. I should have known better.

    The instructor was nice. She seemed very sweet, with the best of intentions, and genuinely pleased to be sharing the teaching material with us. She talked about all the benefits to breastfeeding, how rewarding it would be, and the importance of skin to skin contact and immediately offering the breast to the baby. How that was super important, shouldn't be missed, and all the reasons why. Why you shouldn't even consider pumping for the first 4-6 weeks, because it would be detrimental to your efforts and cause nipple confusion. I chose not to speak up and ask questions about c-sections or special births, I didn't want to open that part of my impending delivery up to a room full of strangers. There was a brief mention of c-sections, and that you could still breastfeed if you have one. I did ask other questions when she talked about how to prevent discomfort or issues that are somewhat common with breast feeding. I'm a worst case scenario person by nature, and really, with this pregnancy, I'm planning for the worst and hoping for the best. But still, I'd like to know how to deal with the worst, cause it's likely to happen, and I like being prepared or at least informed. I don't think she liked my questions, which I'll admit were on the pessimistic side, but she did her best to answer them, following up with a "but that doesn't normally happen, and if you have any trouble at all, call us. We'll come out and give you a hand." Lady, try telling that to my herd of dairy cows. They'll tell you all about how often those problems come up.  

   I'm not sure what the worst part of the class was that set me off so badly. Possibly the re-awakening of the realization that there were a lot of firsts and experiences that we won't get to have, or at least not in the normal sense. It could have been the patronizing overtones, especially the ones used in the video out of the 80's we got to watch. If someone comes into my home and talks to me in a placating and judgmental tone about taking care of my child like I'm a 5 year old who needs to be reminded to take care of her dolly, there might be violence. Like my foot meeting someones butt on their way out my front door violence. I don't know much about child rearing, this is a new experience for me. That means I want to experience it, and learn some of it on my own. I don't need everyone under the sun's advice on how to do this and that, my situation isn't the same as theirs, guaranteed. I understand that public health is supposed to be there to offer assistance, protection, and advice, but I've never responded terribly well to criticism, or people who feel they know far more than I ever will about everything, and that I'm an idiot before I get the chance to prove it to them or not. It just gets my hackles up. Possibly stems from my current feeling on certain members of our health care system, or the fact that I know wonderful mothers who have been told that their child isn't "thriving" according to their standards, and made to feel guilty and like awful mothers. They're not; they're inspirations.

   Anyway. I managed to keep it together for the rest of the class until I got in the car and out of the parking lot, then leaked tears the whole way home before having a mini-meltdown in my kitchen while doing dishes. Poor Husband felt terrible when he came in after milking, and entirely guilty that he hadn't come, no matter how much I told him it was my fault, I had told him he didn't need to attend. He worries about me because I'm "fragile" which I feel anything but. I may not feel like a pillar of concrete, but even if I do get some cracks, I don't think I'll shatter.

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!

Shoot to March, lets say, around the 7th, when we were scheduled for our first ultrasound at 20 weeks. We were excited, since we'd only heard the heartbeat twice before, and a little nervous, since we'd heard some horror stories about the us techs, as well as since the pre-ultrasound pamphlet comes with big bold letters warning you not to even bother asking the sex of the baby, they don't do ultrasounds to tell you that sort of thing. Also, I really had to pee. Really really.
   My first tech was sweet. We had small talk, I asked her about her studies, she made comments on my baby being cute and jumping around all over the place, then after a while, she turned the screen back and got down to business. Or that's what I assumed, being my first time, I had no comparison, and I just thought I was distracting her, and that it felt like a long time because I really just had to pee. Then she left the room, twice, and came back to take more measurements. She had me get up, move around, and I asked if there was any problems getting the measurements. She said it was because of the way the baby was situated, she couldn't get a clear shot of the head, which I thought was a little funny since she said it was moving all around the whole time. She said her supervisor, who was great at getting tricky shots, would be in and take some more pics. That's when we met the cranky tech we'd been warned about.

    Meanwhile, poor Husband was out in the waiting room watching pregnant women come and go, one after the other. None of them seemed rushed, just happy as they left. He asked one of the people or techs if there were problems, where was I, should he go in yet? He was told ultrasounds take time, he needed to be patient. He respectfully pointed out that two other women who arrived after me had come and gone, and yes, he had been told that they were a tech short today. He was told he could take a seat, they'd come get him when he could go in. Around that time I think, they finally told me I could pee.

    A little while later, they let him come in, and we quietly ooh'd and aww'd where appropriate as she quickly did some more shots and measurements with a stern look of concentration on her face. We finished up, and she gave us the pictures, noting with a sour face that the previous tech had already printed out two, so we got three on the little strip of paper we would later pay 17$ for, rather than the two people normally got. Later, all I could think was how much I appreciated that small kindness the first tech did for us.

   Then I made the mistake of asking if everything looked all right, measurements were good, she got all the shots she needed. Then she got quiet, and defensive at the same time. Not overly so, but enough that it made me a little uneasy. She told us quickly yep, she got all the shots she needed, everythigng was ok. Asked again if we were sure of our dates. Told us that the information and pictures would analyzed by radiologists, who were the specialists, not her, the tech, it was just her job to take the pictures, then they would report back to my Obgyn. If there were any issues they saw, they'd be in touch with us. Boy, was that understating it.

   We left, paid too much for our little picture and went to grab some lunch and joke about the fact that it took so long, and all I wanted to do was pee. I still felt a little uneasy, but I couldn't put my finger on why. Mentioned that I should maybe call my internal medicine specialist to see if he'd gotten anything back from my round of blood tests just completed, and chalked it up to that.

I was right to be uneasy.

   About an hour later I was at work and got the call from my Dr.'s nurse, a very sweet lady. She was very upfront, and sounded very serious. I asked if there was a problem and she in an honest voice: yes. They had clearly seen an anomaly, there was no mistaking it. Our baby had Spina Bifida. We needed to get an appointment, come in and meet with the doctor to discuss the finding, and what our options where. We'd need to go to Halifax. Did I understand, did I know what Spina Bifida was? I replied that I was ok. No, I'm nervous. I don't know what Spina Bifida really is, but I've heard of it. It's a birth defect about the spine right? Yes. How bad is it? I can't tell you, you'll need to see a specialist.

    They made us an appointment for later that week, then quickly called back to say we could see them that afternoon. Um, yeah, that was a good call right there. Husband hadn't even made it home when I called him. I couldn't say anything to him on the phone other than come back, I need you to come get me. He did. I started freaking out, googling, worrying, panicking, calling my nurse friend, asking her what she knew, and crying. I went across the hall with my computer so they wouldn't see me cry. He got there and took me home, then we came back and discussed what was going to happen with my Doctor. She couldn't tell us much. Just that it was there, it was a serious thing, and might want to consider termination if it was an option for us. Told us we would be referred to specialists at the IWK. It was a bleak week. On top of all that, we had a wake to attend around milking, and we were going to miss a funeral. Of course, all kinds of extended family had landed at the farm with the news of the death, and everyone was very sad and stressed, especially my MIL. Give her all kinds of credit, my mom was great. Stellar and super supportive. Love her.

   I spent the next week working from home, worrying, researching, and not sleeping very much at all. The nurse had called back to give us our IWK appointment time, and I asked her to read me what the report said. She agreed to do so, but told me she couldn't explain anything, which I said was ok, I had just enough information to be wondering about key factors, and whether they were present or not. She told me everything she could, and that was the first bit of brightness that helped get me through. It wasn't as bad as all I had imagined. Yes, it was there, but now I knew that babies, kids, fully blown adults live and thrive with spina bifida. This might not be as black and white as it first seemed. It was a "spectrum" condition, with all kinds of variables. We still had a big ol pile of questions and unknowns, but we were worming our way through it.

   Next time I'll tell you about the IWK, and the next part of our little trip we call life.....

So, here's the thing,

I figure now's the time to start, I might as well keep a record of what's going on, and also so that I can just put out there what I want to say, instead of keeping it inside, or telling 15 different people, 15 different times. We'll start at the very beginning:

Lets start 5 months ago: We're pregnant! I know, I know, I was the one who always rolled her eyes at the idea of having my own children, I really didn't feel the need to procreate, and animals suit me just fine. Charles was ok with all that too. He mainly expressed his desire to have a life that's manageable, a future that's bright and exciting to look forward too, and if we changed our minds and decided we were going to have kids, to make sure we had them while we were still young enough that he could get down on the floor and play with them.

Aaaaannndddd they're gone!

Ok. Semi-passive aggressive posts about work and my ensuing frustrations are gone. Well, mostly gone, still somewhere for the record, but hopefully hidden from the view of others, kept only for my benefit of being able to go back later and read them and think: Yep, that did suck, but I lived through it, and it's find now. It will also help me appreciate more of what I've got.

Cause I've got a lot to be appreciative for.