Life Update

So, it’s been awhile since I’ve posted on here. Two and a half years to be exact! I’ve had a few people express interest in reading more about our story over the years, but life and such. I do remember writing feeling oddly therapeutic, and if there’s anything a young-ish mom of two needs, it’s free therapy. And vodka. But day drinking while you’re on maternity leave is “irresponsible” and makes people want to “call CPS,” so here we are.

I thought I’d start with an update post since it’s been so long. The last time I wrote to you guys, I was mom to a three year old Carter. We had just moved to Edmonton and I was in a relationship, but Carter and I lived on our own. Today, I’m a married mum of two. C just turned five years old, and his baby brother Liam is just about 4 months. Not sure who decided to let me have two kids given that I’m a f#@king mess of a person, but I’m pretty stoked about the whole thing. My husband likes to compare me to a duck, outwardly appearing to glide gracefully across the water – but if you look underneath, there’s a lot of awkward and aggressive kicking and flapping around. He’s not wrong.

Speaking of my husband, his name is Mark and he’s pretty swell. At the risk of appearing like I’m not basically the tin man from the Wizard of Oz, I’m happy to report that I finally found my person. We coexist pretty well, plus it’s neat to have someone I can throw the children at while I run out the door to go get a massage.

We also have a dog. When she’s not biting the bottom of my pants as I walk around the house, she can be found chewing on literally all of my possessions. We’re still working on our peaceful coexistence.

All in all, life is pretty great right now. I’m probably the happiest I’ve ever been, despite the ever-growing list of stuff I should probably improve about myself. Our life still is, and will likely always be, very centered around Carter’s SB diagnosis. But more about that later.

He’s Here!

Now that my c-section date was set, I decided to do as little as humanly possible on account of how busy I would be once Carter arrived. I know that seems a bit ridiculous for someone who was in the final stretch of her degree, had to move the following month and, oh yeah, was having a baby in the next week. But my fucks were long gone by that point. It was like this calm had come over me; I wasn’t worried about what would happen once he arrived because whatever challenges we would face, I knew we’d get through it.

About two days before he arrived, I started getting random contractions. They weren’t unbearable, but they didn’t feel nice either. Since they were neither regular nor extremely painful, I just let it be. I woke up the morning of March 26^th feeling ecstatic – our day was finally here! My section was scheduled for 11am and I was vibrating with nervous excitement as we arrived at the hospital. I changed into a hospital gown, had a monitor thingy strapped to my stomach and sat there waiting as my excitement slowly wore off and annoyance set in. It was well after noon by that point, and I hadn’t had anything to eat since the day before on account of having to have major surgery on my stomach region that day. On a regular day, I get moody fast when I’m hungry. Today? I was contemplating licking the chocolate pieces off of the Snickers wrapper I found in my purse from who knows how long ago. The contractions were starting to get more painful, which only aggravated the situation further.

I practically jumped off the bed when the nurse came in to check on me. There were no mirrors in my room, but I imagine I looked something like a feral cat at that point. To my dismay, she had come to tell me there was still one more section ahead of me and then it would be my turn. I tried not wanting to claw her eyes out (after all, it wasn’t her fault whatsoever), but what little rationality I had left disappeared and I made a noise that was something between a sigh and a hiss. See? Feral cat. “I know,” she said “it sucks.” She started spouting off about emergency c-sections setting them back as she ambled over to the side of the bed and checked the readings from the monitor. “Oh!” she exclaimed, “you’re having contractions!”

“Yup.”

“Well, forget what I just said about waiting. We need to get you in there right away.” Woooo! Saved by the contractions! I gathered my things and we headed off to the OR.

The most appropriate word I can think of for my childbirth experience is overwhelming. Once I was actually in there, it seemed like everything happened so fast. There was a team of Doctors in there for me and another team for Carter. I tried to stay calm, but my general dislike of needles put that to an immediate halt as soon as I saw the needle that would be going into my spine. Nope nope nope, I thought. The anaesthesiologist must have seen that look before, because she chuckled to herself and then told me it really wasn’t as bad as it looked. And you know what? She was right. It was uncomfortable, but not as painful as you would imagine. It only took a few minutes to go numb from the waist down.

Anyone who tells you that having a c-section is a completely painless experience is a fucking liar. Or maybe my situation was different because Carter was an 8lb, 2oz ball of chub when he came out. But at some point, I remember her telling me I would feel some pressure. She then proceeded to practically climb on top of me and push down. Pain radiated through my shoulder and I clenched my teeth. I briefly contemplated telling her to just make the hole bigger, but decided she probably knew what she was doing and this would all be over soon. And it was. The time of birth was 1:11pm. I held my breath and waited for him to cry. Please cry, I thought to myself. His ability to cry was a good indicator of him being able to breathe on his own and as much as I had tried to prepare myself for all possible scenarios, the thought of my newborn not being able to breathe was still immensely horrifying. A few seconds went by, and he sneezed. And then cried. Loud.

I couldn’t see him, but I was overcome with joy. They took him to the other
side of the OR, and I handed B my camera to go take a picture. He came back and showed me, and my first words were “he’s so chubby!” He was one chubby, pissed off little boy. They did their assessment for a few minutes and determined that he was stable enough for transfer to the Children’s Hospital. He got an Apgar score of 9, which I’m told is rare even for babies who are born completely healthy. Woo! I contemplating doing my little happy dance, but decided against it as I wasn’t sure which organs were where at that point. They wheeled him by me in an incubator and stopped for about 10 seconds so I could see him, and then he was transferred to the NICU while I was stitched up. I would get to see him briefly just once more before he was transferred to the other hospital.

Trimester Three

If I could just take a moment to metaphorically describe the third trimester of pregnancy, I would call it Satan’s butthole. It’s unattractive, uncomfortably hot, and there’s a disproportionate amount of bodily fluids going on.

What is it about being visibly pregnant that makes people think invading your personal space is perfectly acceptable? Seriously. I don’t like people on the best of days, let alone when I’m waddling around in a public place after 2 hours of sleep looking as aesthetically pleasing as a walrus. I’ve heard a few people say that they hate when pregnant women complain about the “special treatment” they receive – having doors held open for them and the like.

Just, no.

First of all, how about we all just be decent human beings and hold doors open for anyone right behind us? I don’t expect (nor want) anything further than common courtesy just because I happen to be growing a tiny human. I hate small talk, and really don’t care what your opinion is on the gender of my unborn child. I had already done everything short of providing a sacrificial lamb to the fertility Gods to find out Carter’s gender, and I was well aware that I was having a boy at that point. If you want to guess the gender that bad, fine. Just don’t stand there and try to engage me in a lively discussion about how I’m carrying “soo low” when I’m thinking about tacos and trying not to pee on the floor. And don’t even think about rubbing my belly, because I will fucking cut you.

Speaking of tacos, I remember perusing my favourite online birth club a lot during the final days of pregnancy and reading a post about how difficult it was to eat big meals at that point. Baby taking up too much room and all that. After several women concurred, I was like “what?! I can’t be the only one who ate 3/4s of a small turkey 2 days ago?” Turns out I was.

I had read a lot about a c-section being necessary in a pregnancy affected by spina bifida, but my Doctor informed me that there actually wasn’t any scientific evidence showing that babies with SB were any worse off from a vaginal delivery. That being said, I had low amniotic fluid levels and a stubborn breech baby who refused to turn. So at 37 weeks, I had an appointment with my OB who suggested that we schedule a date for a c-section. I filled out the necessary paperwork, and shit got real. I was told to pick any date I wanted from Monday to Friday, so I chose Monday, March 25^th. Perfect. A nice easy date to remember.

I quickly learned by “pick any date you want,” they actually meant pick a date and we’ll pick a date close to that one that suits us better. So this was it. My little boy would come into the world on March 26, 2013.

Perfect Plans and Other Lies

So it’s been just about a year since my last post. Wow – I suck at this blogging thing! I’ll spare you all the (several) lame excuses I spent the last few minutes coming up with and get right to it.

I pushed the most recent events out of my head and decided that the rest of my pregnancy would be focused on learning as much as I could about spina bifida so I could be prepared for whatever challenges Carter would face when he arrived. Everything I read kept repeating itself over and over: SB is a disability with a wide range of potential issues and an even wider range of severity which varied from case to case. This was probably the hardest part for me at the time – not knowing exactly what to expect so I could plan accordingly. It doesn’t bother me anymore. Having Carter has enabled me to (somewhat) let go of my incessant need to make plans and just take life as it comes. That sounds like such a cliché, but this is a notion I’ve held on to for a few years now and sometimes it’s the only way I find myself able to cope when things get crazy.

I want to take a minute now to briefly touch on something I promised myself I wouldn’t post about when I started this blog – my relationship with B. The purpose of this blog is not only to share my experience, but to give all of the moms out there a real story about life after a prenatal diagnosis. And that includes how the diagnosis affected my relationship.

Relationships are tested whenever you have a child together, diagnosis or not. Becoming a parent is tough. Period. But when you find out that your unborn child faces a lifetime of challenges, it’s a completely life-changing, devastating experience that does take a toll on your relationship with your significant other. It goes one way or the other – either you become closer as a couple and come out stronger than ever at the other side, or you end up not being the team you thought you were and you go your separate ways. For us, it was the latter.

Please, please don’t get me wrong. I’m not saying that we broke up because of Carter’s disability. I can’t stress that enough. Somewhere in my hours upon hours of reading, I came across some statistics on the correlation between divorce and disabilities, and read about a few women who swear that their unborn child’s diagnosis ruined their marriage. I don’t think that’s true, at least, not in the long-run. Reflecting back on our relationship, I know for certain that we would have never worked out. This news was more like a catalyst towards our inevitable demise, which I’m actually pretty thankful for from where I’m sitting now. Life will always throw challenges your way, some more difficult to overcome than others. If your relationship doesn’t survive those challenges, I’m a firm believer that you’re not with the right person anyway.

The next few months were a blur of school and appointments. I obsessed about the lesion level on Carter’s spine and the size of the ventricles in his brain. His ventricles were slightly enlarged and becoming more so with every check up, which meant that the possibility of him needing a shunt to drain the excess fluid in his brain was becoming more likely. For those who don’t know, a shunt is basically a valve with a tube coming out of it that diverts the excess fluid to another part of his body. Amazing.

Two months before our lease was up, our landlord let us know that they would be selling the condo we were currently renting. The end of our lease just happened to coincide with the month I was due, which was in April. So, I thought to myself, just to recap, I’ll be having a baby and finishing my degree and moving to another place all within the span of a month. Awesome. At that point, B and I were still together so we decided the best course of action would be to move back to my home town and stay with my parents over the summer so B could work and I could stay home with Carter. The perfect plan. Almost.

Good Grief

I remember feeling happy and somewhat normal as B and I headed to my appointment for Carter’s echocardiogram on Tuesday morning. By now, we had it down to a science. We knew where the best parking spot was, the fastest way to navigate through the building and he grabbed a magazine for me as I checked in. They called my name after a few minutes, but instead of being lead to back to change into a hospital gown like I expected, we were lead to one of the ‘discussion’ rooms. Probably just to talk about the details of the echo, I thought to myself.

Dr. Friendly walked in less than a minute later, and again took her usual spot on the arm of the chair next to me. She stared at me for a second. I stared back. “This is going to be a rough day for you,” she said. I blinked. “What? No” I replied, “I called yesterday to let the receptionist know that we had decided against the abortion. She told me to still come in for the echo today.”

“Oh” she said. Her tone was flat, but she had a look somewhere between confusion and disapproval on her face. “The echo was actually canceled and an abortion was scheduled, instead.” I started to feel anger rising through my body. “What?” I asked. “That wasn’t the plan. I was supposed to call yesterday to confirm the echo or to let her know that we had chosen to have the abortion performed, instead. Why was the appointment changed without my consent? Why am I even here, then? Can we still do the echo today?”

“No, we will have to reschedule the echo,” was her reply. She completely ignored my question about why the appointment was changed. Whatever. I wasn’t going to argue. “You know” she said, “he probably won’t walk. And of course, he could die anyway.”

What the actual fuck?!

Tears stung my eyes as I clenched my jaw so I didn’t say something that would get me escorted out by security. How dare she? As I had come to learn through the moms in my Spina Bifida group, this lady wasn’t even qualified to talk about prognosis! That was a neurosurgeon’s job. The only reply I could muster was that we would deal with the challenges upon his arrival. I stood up and walked out without another word. I was seething with rage, and could hardly open the door because my hands were shaking so badly. I needed to get the f out of this place, stat. I stopped at the front desk and my voice cracked as let the receptionist know that I was not to be seen by this Doctor ever again, and if this wasn’t possible then I would find another clinic to go to. She stared up at me for a second, as if waiting for further explanation but I just stood there, blinking back tears. A few seconds passed and then she said that it would be fine and she would ensure I would be seen by another Doctor on staff for the remainder of my pregnancy.

Thank god.

B followed close behind me as I walked to the car in a huff. We got in, and he barely had time to close his door before I exploded. “Who the fuck does she think she is?!” I yelled. I tried to calm down; all this rage couldn’t be good for the baby. But, seriously. After everything we had been through, to decide to continue with the pregnancy and have her say those things to me on a day that I felt happy and confident with my decision? Screw her. She wasn’t worth all of this anger. I closed my eyes and took a few deep breaths as I thought about how far we’d come. It was then that I realized that I had recently gone through a grieving process without even knowing it.

The more I think about it, the more confident I am that it was a good, healthy thing to grieve. Some part of me felt guilty at the time for grieving for my son when there were other parents who had babies that wouldn’t even survive. But this reminds me of a saying a good friend of mine posted on her Facebook page: “Telling me I can’t be sad because somebody else has it worse, is like telling me I can’t be happy because somebody has it better.” It’s true. Carter’s diagnosis had been the worst thing to happen to me, ever. I lost the perfect, healthy child I had imagined I would have when I was off in my magical pregnancy place so long ago. It was a very real loss. For me, the grieving process was over. I had made the most difficult decision I had ever faced, and it was the right decision for my family. I smiled at the little boy stretching around in my belly and decided Dr. Friendly wasn’t worth wasting another thought on. I couldn’t wait to meet this little boy who had already taught me so much.

The Big A

The next few weeks were a dark haze. I was told it would take 3-4 weeks to get the complete results of the amnio back. It was nearing Christmas, which meant I was also dealing with final exams and project due dates in school. I had weekly blood work to be done because of my low platelets, and a slew of additional appointments for them to monitor Carter. On top of all this, my relationship had recently taken a very bad turn. I remember spending my days in the spare room, lying in bed and wishing my time away so I could know the fate of my little boy. That’s all I thought about, all I could think about.

Sometime in the duration of those few weeks, I had yet another ultrasound. As per usual, I was led back to one of the rooms to wait for Dr. Friendly afterwards. I hated that it felt so routine, and I dreaded talking to her. She always stared at me after saying something, as if expecting me to collapse in a heap onto the floor and sob, even though I had never let more than the occasional tear slip down my cheek in front of her. She came into the room, and sat in her usual spot – right on the arm of the chair beside me. Ugh. Had she ever heard of personal space? I shifted uncomfortably. “Upon going over the results of the ultrasound with the neurosurgeon, we think that the lesion may actually start at L3 level, instead of L4.” She went on to discuss the implications of this, but I knew what it meant. Higher lesion level, in general, meant a more severe prognosis. However, I also knew that spina bifida cases were very individual. Although it stung to hear those words come from her mouth, I knew I couldn’t let it get me down. Prognosis was impossible to nail down before birth, and even after birth it would be hard for them to tell me what he would or would not do. I knew this. Deep breath. “Okay,” was all I said as she stared at me. The seconds passed, and I felt increasingly awkward.

“In Canada, you can get a medical abortion up to 24 weeks,” she said, as casually as if she were relaying the contents of her lunch that day to me. I was just under 23 weeks at the time. “NO”, my mind screamed. I instinctively put my hands on my stomach, and fought back the urge to donkey punch her. Ease up, Krystle. She’s only doing her job. “I don’t think that’s the right option for me,” was my reply. She then followed up with wanting me to think about it. I had a few days to decide, so I should give it some thought and call on Monday. We were scheduled in for an echocardiogram on Carter’s heart on Tuesday morning, but we could change that and the abortion could be performed then instead. I asked her what the process involved. Essentially, they would put a needle through my stomach, into Carter’s heart and stop it. They would then induce me, and I would give birth. Carter would be still born. I could choose to spend some time with him or not before they took him away.

Wow. I wasn’t even slightly prepared to hear that.

I left, feeling angry. I knew, even then, that I shouldn’t have been angry with her for letting me know what my options were; I just didn’t know how to process this new information. This little baby growing inside of me had become my whole world since I found out I was pregnant, and the thought of not having a teeny little human to cuddle in a few months was beyond devastating to me. Now, I think it’s important to note that I am 100% pro choice. I don’t ever judge other women for their decisions about their own uterus. It’s none of my business. And if this choice is something that anybody reading this is ever faced with, I wish you all the best in making whatever decision is right for you. It ended up being the most difficult decision I had ever made. My thought process went from ‘how dare she even suggest that,’ to ‘why would she suggest that,’ to ‘fuck. She must have suggested it for a reason.’ Would his life be that terrible that he wished he were never born? God, what if he hated me for bringing him into this world?

After thinking there was no place to go but up, I entered another downward spiral. B and I talked about it, and his thoughts were that we should continue with the pregnancy and that the challenges we were to face could be dealt with when they happened. I wasn’t convinced, and started bombarding him with all of these horrible “what if” scenarios. He said that he would support whatever decision I made, and that he didn’t really feel like talking about it anymore. He buried himself into his laptop, and I was left to my own devices.

During the next few days, it seemed that I had come across a disproportionate amount of people in wheelchairs. I would stare at them, attempting to gauge their happiness level and resisting the urge to ask them if they wished they were never born. Every small reminder of the future that my little boy could face was like someone was twisting the knife that had recently been plunged into my heart. I remember sitting on the couch one afternoon, flipping through channels without even really paying attention to what I was looking at. I just needed to find a way to stop thinking about all of this, even for a minute. I stopped when I saw a blur of bright pink flipping through the air. Oh, good – a show about gymnastics. I stared at the screen, and the next scene cut to a teenage boy in a wheelchair. He looked sad. My eyes brimmed with tears. I couldn’t do this. I lifted up the remote to change the channel, and then it happened.

Boom. What the hell was that? Was that a kick? Up until now, I had only felt rolling movements like he was doing somersaults in there. Boom. It happened again. I lifted up my shirt and stared at my stomach. He kept kicking. This was incredible! How could he be kicking me this hard if his legs were paralyzed? I quickly consulted Dr. Google, and what I found was that while kicks were never a bad thing, they weren’t always a good indicator of movement outside the womb. As a realist, normally I would have accepted this information and moved on. But I couldn’t shake the feeling that this was his way of telling me that everything would be okay just when I needed to know that the most. Even now, it’s hard for me to accept that moment as pure coincidence. I allowed a tiny sliver of hope to slip through.

I woke up the next morning to the sun blaring through my window and as someone whose mood had always been greatly affected by the weather, I wished this beautiful day could make me feel better. Before I even finished that thought, it happened. The phone call I had been waiting for. I picked up, wondering if they would be able to tell me the results over the phone or if I would have to make an appointment (and by make an appointment, I mean barge in to the clinic and demand answers). The nurse on the phone had a cheerful tone. I tried not to get my hopes up. And then, she came right out and said it: “the results show that your baby has a normal karyotype. That means that the baby has tested negative for not only Trisomy 18, but for all other chromosomal defects as well!” I thought I might actually die of happiness right then and there. She gave me a moment to process, which was great because I’m not sure I would have been able to form an actual sentence. “Oh my goodness,” was all I could manage to eventually squeak out through the smile and the tears. “Oh yeah” she said, “did you ever find out the sex?” I let her know the ultrasound techs thought were having a boy. “Let me take the guess work out of that for you – it is definitely a little boy in there.” For the first time in weeks, I felt nothing but pure joy.

I could have never guessed that I would feel relief that my sweet baby boy “just” had spina bifida. It was then that I decided that no matter the challenges my son would face, we would face them together. I couldn’t take his life away before he even had a chance to live it. I’m a firm believer that life is what you make of it, and I made a promise to myself and to Carter in that moment. I would never, ever let anybody define him by his limitations, whatever they would be.

I felt incredible. I pulled the curtains open and stood there, eyes closed, as the sun poured over me. Then, I laughed because what I was doing seemed like one of those things you only see people doing in the movies, and not something that actually happened in real life. I was suddenly longing for fresh air, some good food and to hear my parent’s voices. It was good to be back.

The weekend went by, and I was thrilled to call the doctor’s office on Monday morning to let them know my decision. I asked the receptionist if she still wanted us to come in for the scheduled echocardiogram the next day, she said yes and that was that.

Except, it wasn’t.

Level 2

Wednesday finally arrived, and I looked like hell. I had bags under my eyes from either not enough or too much sleep – I couldn’t really remember. I felt weak and nauseous, my face all blotchy and swollen from crying for the majority of the past five days. I was anxious, emotionally and physically drained, and just plain pissed off at the world. We were stuck in early morning rush hour traffic, and my fuse was all but gone. I snapped at B as he “let” someone in front of him – in reality, they cut him off. But I was looking for any and every excuse to project my anger on to someone. Anyone. We arrived late, but it was like the receptionist knew what we were there for. She gently told me to take a seat in the waiting room and that they would call me back right away. They did.

I remember the Doctor who did the ultrasound. Her bedside manner was less than stellar, and although I’m not one for small talk, this woman gave me a bad vibe. She talked while the nurse accompanying her scribbled down notes. I heard her say L4-5, S2. I knew from my research that she was referring to the level of Carter’s ‘lesion’ on his spine. Spina bifida is considered a “neural tube defect,” and Carter’s spine didn’t close as it should have during very early pregnancy. Basically, his spine had failed to form properly before I even knew I was pregnant. When the Doctor said L4-5, she meant that the opening started at either the 4^th or 5^th lumbar vertebrae, and his defect went all the way down to the 2^nd sacral vertebrae.

After the ultrasound, Dr. Friendly left the room without a word and a few minutes later, I was directed to another room just like the one I had received Carter’s diagnosis in. Soon after, she arrived and sat down on the arm of the chair beside me. She went over a few basic things about spina bifida that I had already read about. She told me that they believe he had the “myelomeningocele” type, which felt like yet another punch to the stomach. This is the most common type of diagnosed spina bifida, and also the most severe. I had spent much of the past few days wishing for it to be any type but this one. It meant that the nerves in his spine were exposed to the amniotic fluid surrounding him, and that this was causing nerve damage. I was overcome with self loathing. My body was hurting my baby, and there was nothing I could do about it. She said that it is difficult to diagnose lesion level on an ultrasound, but that their best guess was that the lesion started around L4 and went down to S2, just as she had stated in the ultrasound room before. She also talked about the markers they saw in his brain that were indicative of spina bifida. He had both the “lemon” sign, and the “banana” sign. She classified this as the “Chiari II malformation,” which I had also read about. This malformation was what could cause potential eating, swallowing and breathing issues. Along with this, she also said they noticed mild hydrocephalus, which was a build-up of cerebrospinal fluid in his brain.

Oddly enough, I had no more tears. I sat there, numb, absorbing as much information as I could. That is, until, she said “and there’s actually something else I’d like to discuss with you before you leave.” My heart nearly stopped. What now? What else could possibly be wrong?

“We’re concerned because he hasn’t been opening and closing his hands during his ultrasounds. This could be just that we’re catching him at the wrong times; however, it is also a marker for Trisomy 18.” Having been tested and given risk percentages for Trisomy 13, 18 and 21 during standard testing in early pregnancy, I knew that Trisomy 18 was fatal.

I started to sway. Was I going to pass out? I closed my eyes and tried to regain my composure. “What do I do, now?”

“Well,” she said, “we would like to get you in for amniocentesis tomorrow. We would insert a needle into your stomach and draw out some of the amniotic fluid surrounding the baby. This would enable us to definitively diagnose the myelomeningocele, as there would be spinal fluid present. It would also allow us to study his chromosomes in complete detail, which would tell us if he is positive for Trisomy 18. There are, of course, risks associated with this procedure. The rate of miscarriage is about 1 in 200. The choice is yours.”

I decided to make the appointment, take the day to think about it and let her know I would call in the morning to confirm or cancel.

I went home, and immediately pulled out the results of my 13 week ultrasound. I was given a 1 in 8806 chance that he would have Trisomy 18. That had to be good, right? After some thought, I decided to go through with the amniocentesis. I needed to know.

D-Day

19 weeks and 6 days. November 16^th, 2012. D-day is what I call it now: diagnosis day.

I woke up (and I use the term ‘woke up’ loosely, as that would imply that I got some actual sleep) feeling over the moon. The day I would get to see my baby again was finally here! For those of you non-pregnancy buffs out there, the 18-20 week mark is when they do a super detailed scan of your baby to check for any red flags, health wise. To say that I wasn’t worried, like, at all would be a bit of a lie. I am a worrier, by nature. Somewhere deep behind my elation there was a little nagging feeling of “what if?” It was nowhere near enough to scare me or make me feel like I needed to prepare myself for bad news, so I made lunch plans with my boyfriend (let’s call him B) for after the ultrasound, snapped a quick photo for my Facebook pregnancy group and we made our way to the clinic.

When we got called back, everything started off perfectly normal – just like any of the ultrasounds I had already had. I was trying not to pee my pants, and the cheerful ultrasound tech was asking questions about my pregnancy as she took baby’s measurements. She asked if I wanted to know the gender and I said that I was told a few weeks ago that we were having a boy. She said that’s what it looked like to her as well, and I told her the name we had picked out. All of a sudden, it was like a switch went off and her demeanour completely changed. She lost her cheerful tone as a look of concentration spread across her face. I could tell she was trying to be professional by the way she explained what we were looking at, but I could also tell that something more was going on. My heart was in my throat, but I was too scared to ask.

She was looking at baby’s spine.

She measured and stared as she snapped photo after photo, the corners of her mouth showing the faintest hint of a frown. Every word that left her mouth was calm, cool and calculated. Each click of the mouse brought on a new wave of fearful nausea in the pit of my stomach. After that, she moved to baby’s brain.

I held it together long enough for the ultrasound to be done. Afterwards, she told me to stick around as she was going to have me speak to a doctor before I left. She closed the door, and my lip started to tremble as I looked at B. “Something’s wrong with our ba-“ I said, but my breath caught in my throat before I could finish my sentence. I tried to swallow, but my throat was too dry. “You don’t know that, please don’t cry” was his response, but it felt far away. It was like my body was preparing for the impending terrible news by trying to shut down. Even now, as I type these words, I can feel my chest getting tight and the tears start to form as the memory of that moment comes back to me. I was so scared. A few minutes later, she came back and directed us to a room where we would sit and wait for the doctor. Three chairs, some magazines and a portable ultrasound machine. The room felt cold. Sterile. I managed to slightly regain my composure while we waited, but as soon as he came into the room and sat down, a solemn look on his face, I knew it wasn’t good.

What he said was a complete blur until I heard the words “spina bifida” come out of his mouth. Aside from maybe reading those words a few times during my baby research, I had never heard of it before. I tried to listen carefully to what the Doctor was saying. Something about 3 different types. Can’t definitively diagnose which type until we get a “level 2 ultrasound.” Amniocentesis. Possible complications: lower limb paralysis, muscle weakness, loss of bowel/bladder control, fluid build up in the brain, issues with eating and sometimes even breathing. I felt like I was punched in the stomach. I don’t even know how I was crying with no air left in my lungs, but I vaguely remember being doubled over in the black leather recliner wondering where those faint sobs in the background were coming from. I tried to concentrate through the haze, and then it hit me. It was me. Those sobs were coming from me. After awhile, the Doctor left. I will never forget the look of sympathy on his face as our eyes met before he closed the door behind him. I’m not sure how long we stayed in that room, but I was still sobbing as we left and I can still see the concerned stares from complete strangers as B helped me to his car.

The rest of my day consisted of crying, numbness and sleeping. Somewhere in the midst of all this, I wrote this to my Facebook group:

“I’m absolutely devastated. I just had my ultrasound this morning, and my little boy was diagnosed with spina bifida. They don’t know how severe it is yet, I have a more detailed ultrasound Wednesday morning. This is by far the worst day of my entire life, and I could really use some positive vibes sent my way for Wednesday morning. I’m shocked, devastated and beyond terrified. I don’t know what to do or how I’m going to make it to Wednesday without knowing anything more.”

It turns out, I made it to Wednesday by surviving on the love and support of the incredible people in my life. My parents dropped everything and made the 8 hour trip to Calgary so they could be with me for the level 2 ultrasound. My best friend (who was no longer staying with us to complete her practicum) offered to make the trip down from Edmonton. B made sure I ate, held me as I cried and gave me space when I needed it. I tried my best to stay away from Dr. Google, but my desire to arm myself with information (even if it was worst-case-scenario information) got the best of me. I wanted to know anything and everything there was to know about spina bifida so I could make sense of what would happen on Wednesday.

It’s A…

It probably wouldn’t be too far off the mark to call me the world’s most impatient person. I was nearing the 16 week mark in my pregnancy, and I was completely convinced that I was having a girl. If I’m being completely honest? I thought I might be a bit disappointed if my little girl was actually a little boy. Add that to the list of ‘crap Krystle has said out loud that normal people only think on the inside.’ It’s a pretty big list. And if you’ve read my little ‘about me’ blurb, you already know that I have a son. Oops?

My next ultrasound was scheduled for when I was 19 weeks and 6 days, which was clearly too long of a wait to find out the gender. I started looking into 3D ultrasounds, only to find out that UC Baby wouldn’t do them this early. That’s when my cousin mentioned a woman who did ultrasounds out of her home in Edmonton, 2.5 hours away from where I lived at the time. I know what you’re thinking. What kind of crazy person drives 2.5 hours and pays ridiculous amounts of money to find out something they would learn for free (and in their own city) weeks later? The answer? This crazy person. Let alone the fact that this lady could have been a complete psychopath (thankfully, she was rather sweet). My best friend was staying with me at the time, so I jumped into the car with her and my boyfriend and off we went.

When we finally arrived, I thought I might actually vomit from something other than nausea for the first time in months. I was vibrating with nervous excitement as she prepped her ultrasound equipment. First, she showed me baby’s face. And actually, it looked terrifying. Thankfully, my best friend has about as much of a filter as I do, and I burst out laughing when she was like “okay, that’s so creepy!” After my not-quite-hard-yet pregnant belly stopped jiggling from the laughter, the ultrasound lady manoeuvred her little wand downwards and asked me if I had a guess as to what the gender of my baby was. I stared up at the screen, and was 100% sure I was seeing little baby boy junk. She confirmed.

I felt.. elated? Holy crap! I wasn’t disappointed! I couldn’t remember ever being so happy. I was having a boy! My creepy little gremlin baby was a boy! Up to that point, that was the best moment of my entire life.

I shared the news with my family, and immediately started discussing baby boy names with my boyfriend. After countless lists and countless hours spent trying to find a name we both agreed on, I was seriously questioning my relationship. Who was this person with the awful taste in baby names? After what seemed like forever (but was probably only a few days) we narrowed it down to two names: Carter and Jackson. I pictured my little gremlin, and tried to think of what name suited him best. It turns out that exactly zero human names are well-suited to gremlins, so I did the next best thing. Carter had been my grandma’s maiden name, and I loved the thought of having some meaning behind the name I would give to my son.

Carter. My little boy’s name would be Carter.

Pregnancy Brain

So, my last post was on May 20^th and it is now July 15^th. Worst. Blogger. Ever. I KNOW. What can I say? Life got crazy, as it often does. My next post may not be until 2016, so I hope you enjoy this one.

I’m pretty sure I did more research in the first few weeks of my second trimester than I did throughout my entire undergraduate degree. In short, here are a few key things I learned about pregnancy and life with a new baby:

• Breast milk and/or coconut oil will solve all of your problems. You heard me. All of them. Basically, I pictured raising my child in a container of coconut oil while squirting him with a water gun full of breast milk a few times a day. Sort of like a plant.
• Before baby comes, it is a good idea to “massage your perineum” with olive oil. Immediately upon reading this, I came bounding out of the bedroom with a huge smile on my face. “Hey sweetie, wanna rub some olive oil on my taint?” I got ‘the look.’ The look generally consisted of equal parts confusion and an attempt not to vomit. It had happened enough times since I had become pregnant that ‘the look’ was a totally justifiable classification for it. “What? Too sexy?”
• At some point in your pregnancy, you have to get tested for gestational diabetes. They force you to drink what I can only describe as liquid sugar with orange food colouring. My first thought after I was sure I wasn’t going to barf it right back up, was “well, if I didn’t have diabetes before…”. Some women are total weirdos and love this drink (I’m looking at you, Natalie)!
• Sleep will be non-existent long before you ever bring your child into this world. At a certain point, you are no longer allowed to sleep on your back. For obvious reasons, you cannot sleep on your stomach. They say that sleeping on your left side is best, but for someone like me who usually changes positions 100 times a night, no f*cks were given. I usually slept partly sitting up, or I hefted my large self from side to side throughout the night in a feeble attempt to get some actual rest between pee breaks and/or being up to pop some tums like they were tic tacs. People will joke that “you’d better get your sleep now, because you won’t get any when baby is here!” And you will want to stab them with the nearest sharp object. In my case, that was usually a fork.

The most accurate way to describe a pregnant lady (or at least me as a pregnant lady) is ‘forgetful psycho.’ I found a wet, wrinkled shirt in the refrigerator once. Right where the cheese strings used to be. This is called ‘pregnancy brain,’ which changes to ‘mommy brain’ immediately upon the birth of your child. I am not convinced it ever goes away. And the psycho part? I blame that partly on our health care system. Since when is it perfectly okay for a doctor to call someone who is growing a human being, and leave a message that she needs to see them about some blood work results 5 minutes before closing on a Friday? Her office happened to be 30 seconds down the street, and my pregnant ass ran jogged walked as fast as I could when they wouldn’t immediately answer my phone call. Tears in my eyes, I was hoping that I wouldn’t have a panic attack on the way there and also that I wouldn’t have to kick down their door when I arrived. Thankfully, it was still open. I rushed in, and with as much composure as I could muster, I shakily let the receptionist know about the voicemail I received. The doctor who had called happened to overhear me (probably because I was yelling) and called me into the back. My tact long gone, I blurted out “is my baby okay?” before the door was even closed behind her. When she told me that baby was just fine, I was so relieved that I forgot all about wanting to throttle her for her horrid voicemail 5 seconds earlier. She asked me about my platelets and if I had a history of them being low, to which I responded that this was the first I had ever heard of my platelets at all. She mentioned that they weren’t low enough that it was a huge deal, but she wanted to refer me to a hematologist and to let me know that my pregnancy was no longer considered low risk. This meant that I could no longer be seen at her office, as it was a low-risk maternity clinic. I was still so elated that there was nothing wrong with my baby that I didn’t realize what a pain in the ass this would be in my immediate future.