We’re almost there! Here’s what my pregnancy journey has taught me
I have meant to blog at regular intervals about this crazy ride of a pregnancy I have had, but between my full-time job – something I have been so thankful to have during COVID, my podcast and my volunteer work on my condo Board, plus dealing with the pregnancy-related symptoms and body changes, I didn’t have a chance to record my thoughts outside of some brief Instagram posts. Now, at 36.5 weeks gestation and with a planned c-section scheduled for two weeks from now, I have the time to sit back, reflect and write down what I’ve been thinking for the past two months.
I have to clarify that my pregnancy has been anything but a wild ride medically speaking. In fact, it’s been so textbook boring that I think all the specialists on my care team (five to be exact) were expecting they’d have at least one problem to troubleshoot. After all my doubts, it turns out my body has been strong enough and has held up better than expected against the demands of a little human growing inside my belly. My cardiologist has never sounded so happy, my gastroenterologist talks to me more about my parents and in-laws cultural traditions than my actual stomach issues, my OB doesn’t even bother coming in anymore during my now-weekly appointments and my psychotherapist says she’s seen incredible growth in me.
However, for me it’s been anything but smooth sailing. I’ll talk about all the challenges a bit later on but it turns out the girl with emetophobia was “blessed” with a pregnancy where the nausea never went away. It definitely improved as things progressed, but I would get these stretches of four to five days where I would think it was finally gone and then it would come back twice as hard. I finally saw a huge improvement in the queasiness when I went on maternity leave two weeks ago – no more worrying about looking green on Zoom meetings with my boss! But it doesn’t help that my biggest aversion throughout these past eight-plus months has been to mint and with having to follow strict dental hygiene due to my cardiac issues, it’s not like I could skip brushing my teeth. Yes, I know, there are other flavours of toothpaste but they’re hard to come by and who knows if they would have eventually become a nauseating trigger as well. I’m guaranteed at least two hours of mild to moderate nausea per day, usually in the mornings after brushing. The good news? I still haven’t thrown up, and I really don’t know how I haven’t. I’ve come close on so many occasions, although I stopped gagging mid-second trimester. I have also been told that people often throw up during c-sections so believe me, my mind is already concocting worst-case scenarios.
What I’ve failed to mention in these past three paragraphs is anything about our actual baby! Yep, there’s a huge reward coming at the end of this pregnancy hell. Baby is doing quite well from what we know and she’s got a good shot from the beginning because she didn’t inherit my heart condition! A fetal echo at both 12 and 20 weeks’ gestation showed no signs of any major heart defects. She has also been extremely active since I first felt her flutter at 12 weeks and now spends most of her days trying to find a way out of my uterus, which is actually very painful. Her movement is a bit more restricted now that I’m the size of Phoebe before she gave birth to her triplets on Friends, and of course that freaks my OCD mind out a bit. I never did kick counts despite being told to do so because I knew that would make my anxiety spike, plus I’m quite aware if she’s quieter than normal anyway as I am overly in tune with my own body.
Dennis and I also decided not to run any extra genetic testing on her besides the down syndrome screening test that is covered by our provincial government. We’ve seen examples where after dropping $800, these test results have been incorrect. If something does come up with the baby, we would rather not know about it ahead of time and we’ll deal as we go. It’s not like the results would have changed our plans: despite being strongly pro-choice, we would never abort if we learned our child had a serious disability because …. well, just look at how my life turned out and my odds were downright terrible!
So as I approach 37 weeks and I am hunkering down for the arrival of yet-to-be-named #BabyRosenChung2021, I wanted to share what it has been like going through pregnancy as a person with multiple disabilities during a global pandemic, as well as some advice for anyone who is considering pregnancy but is on the fence due to their health issues. I’m hoping my words will help someone in a similar situation feel less alone.
NOTE: The following contains some coarse and explicit language and may be TMI for some of my readers. There may also be some triggers in here for which I apologize in advance. Also, I have tried to occasionally substitute “pregnant person” for “pregnant woman” where I remembered to do so, as some transgender men and non-binary individuals are biologically able to carry a baby. If that applies to you, then you’re seriously a superhero! (I also apologize for the weird formatting of the subheadings. I gave up after trying to edit them 10 times!)
Post-baby birth, we won’t be having any visitors outside of socially-distant get-togethers with our parents, which also thrills me because the last thing I’d want while recovering and getting to know my daughter is a revolving door of guests. Ultimately, COVID has given me the best excuse to protect myself, Dennis and our little baby from any harm.
Because of my never-ending nausea, I have been on Zofran since five days after finding out I was pregnant. Zofran doesn’t exactly have a perfect record and there are some small risk factors, but without it I would not have been able to survive this pregnancy. I’ve managed to stay on small doses, only taking 12 mg per day at my worst – below the recommended dosage – and I have only taken 4 mg per day since I hit 18 weeks. I also couldn’t have gotten through my first trimester without Gaviscon, an over-the-counter reflux drug which of course has a pregnancy warning slapped onto it, but if you read the small print it’s still absolutely fine to consume provided you don’t chug it like beer. In addition, my daily prescription medication for GERD was doubled and considered perfectly safe.
Perhaps the most shocking is that I was given the green light to continue taking Amitriptyline throughout the entire pregnancy. This tricyclic antidepressant that has been around since the 1960s is now used for pain control for women with vulvodynia and interstitial cystitis (IC) like myself. The majority of people with these conditions are told by their physicians to get off Amitriptyline before they even try to conceive. As a result, those in my online vulvodynia and IC groups are shocked to find out that every doctor on my care team said I could stay on it throughout my pregnancy. Yes, it can be dangerous to the developing fetus if taken in high doses, but at 25 mg per day all my doctors told me it was perfectly safe and I had nothing to worry about. And believe me, I couldn’t have gotten this far without it (more on pelvic pain and pressure coming up).
Meantime, pregnant people are strongly encouraged – if not downright ordered – to take prenatal vitamins, not only throughout the 40 weeks’ gestation but sometimes well before then, including during the period of trying to conceive. While I did start folic acid a good four months before I learned I was pregnant and have stayed on it throughout, I have never taken prenatal vitamins. These can be extremely hard on the stomach and for someone like me, would likely be difficult to tolerate. My doctor told me if I could stick to the folic acid alone, that would be good enough for her. Instead of prenatals, I made sure I ate a solid, balanced diet. It wasn’t always easy to do during first trimester but it helped that I mostly craved healthy foods. Outside of a few days, I was still able to eat chicken, beef and fish, although I still can’t tolerate any ground meat. I substituted frozen berries and Activia yogurt for desserts, green and orange veggies for carbs (where I could), granola bars, figs, prunes and nuts for snacks and green smoothies, vegetable and cranberry juice for pop. I also upped my intake of the vitamins I could tolerate – C and D. I have to say that despite the nausea and heartburn, this is the healthiest I have ever eaten in my life and I’ve certainly reaped the benefits, if not downright enjoyed most of my meals.
The moral of the story is, advocate for yourself and find out what is safe to take – both medications and vitamins-wise. Do your research and ask plenty of questions. You don’t need to suffer through pregnancy or be a martyr. Remember there was once a time where people drank through their entire nine months and smoking wasn’t given a second thought, and most babies still turned out okay … most. And don’t you think that pregnant people in other parts of the world still consume raw fish, runny eggs and cured meats? Of course they do! I’m not suggesting you head to the nearest sushi house and down a plate of sashimi with sake after taking 400 mg of Amitriptyline, but stay informed, speak with your health care team and stand up for your own health. After all, flight attendants do tell you to put your mask first before helping anyone else when heading into a crash scenario.
The good news is, the opposite does not ring true. While my mom had a terrific pregnancy, did everything correctly and yet I still came out fucked up, women who have little-to-no pregnancy symptoms can also have perfectly healthy babies and for the most part, they do. Ultimately, whatever you experience in your pregnancy isn’t necessarily an indication that you or your baby are in bad health. Stay in tune with your body and speak with a medical professional if you have any concerns, and with that said …
The advice I was given at my high-risk pregnancy clinic was to avoid those websites entirely. I haven’t exactly listened and I continue to check them out week by week because some of the information can be useful. But what I’d give to see a mainstream website that details what you can expect each trimester if you have a congenital heart defect, IC or irritable bowel syndrome. It would be so great to see more representation of pregnant people like us in the media because we now exist in greater numbers than ever before thanks to modern medicine and care that enables us to carry safely. Now we wait for the rest of the world to catch up.
When I’d try to find stories similar to mine – and of course majorly strike out! – all I would read were heartbreaking stories about infertility, and what women would give just to be hovering over the toilet all day because it would finally mean that they got two lines on a pregnancy test. I felt absolutely awful about getting pregnant so quickly, when so many of my friends went through four, five or even eight-year-long infertility journeys. Even worse, I felt shame for complaining about my morning sickness and other symptoms when some people would literally cut off their arm or leg just to finally be pregnant.
The message here is, it’s okay to hate your pregnancy whether you conceived immediately or it took you five years and 10 rounds of IVF to get there. It doesn’t mean you hate your unborn child or you’re ungrateful for being on this journey. Pregnancy is fucking hard on anyone, let alone for someone with disabilities or someone who has had to take a million shots in their stomach and butt to get to this point. It’s okay to admit you’re struggling and that you’re miserable, even if you’re over the moon about the end result.
Furthermore, you don’t have to embrace these changes in your body. I’m not going to lie – pregnant women do look amazing. In fact, I believe the sicker you are, the more you glow all thanks to your crazy hormones. But popular culture (*cough* INSTAGRAM *cough*) has put pregnancy on a pedestal that can make us feel really bad if we don’t love or want to celebrate our new look. Personally, I hate what pregnancy has done to my body. I spent nearly two years getting in shape via strength training and Pilates and for the first time in my life, I loved the way I looked. Pregnancy quickly undid all that and now I’m just counting down the days until I can safely get back to my usual exercise routine. At the same time, had I not been going to the gym and exercising regularly, maybe I wouldn’t have had the physical strength to survive this pregnancy.
As Alexis Rose from Schitt’s Creek would say, “I love that journey for me,” or maybe I should paraphrase her by saying “I accept this journey for me.” Your experience is unique to you and you do not need to be like anyone else. Complaining about your pregnancy symptoms or weight gain does not have any link to your ability to be a good parent to your unborn child. Despite me hating 98.5 per cent of my pregnancy, those moments getting to bond with my daughter who I have been able to grow myself have made everything worth it. As much as I feel ready to break from how challenging these past eight months have been, I also love this baby so much that I cry on a semi-regular basis (okay, at least once per day).
It’s also a huge benefit for people who struggle with anxiety around uncertainty to know exactly what date their baby will arrive. For me, knowing this pregnancy has an end date has really helped me to focus on the end goal. Only two more weeks of nausea! Only two more weeks of feeling like a beached whale! Only two more weeks of barely being able to climb a flight of stairs! And best of all, only two more weeks until I meet my little girl who will be delivered in the safest manner possible for both her and me.
Unfortunately, and again this all comes down to mainstream pregnancy (*cough* INSTAGRAM *cough*) culture, there’s a huge push (no pun intended) to deliver vaginally and in many cases, without any pain medication – as if women can only prove their strength via suffering. Yikes! I can’t tell you how much I fucking hate this belief! I do understand that no one wants to go through surgery if they can fully avoid it, especially for someone who has never had to spend a night in the hospital, and there are definite drawbacks of having to recover from a major operation while learning to care for a newborn. Furthermore, there are women out there who actually enjoy giving birth. However, there are some countries where c-sections are considered the norm or are encouraged. Choosing this option should never be seen as a sign of weakness. I even wondered at first if by asking to go this route I was taking “the easy way out,” but when it comes to pregnancy there really is no easy way out. And if I've learned anything in my 36 years, I know I do surgery well. I also have previous experience with abdominal surgery so I have a bit of an idea of what to expect.
It’s so important – especially if you live with disabilities – to have a detailed birth plan or at least a wish list, with some wiggle room for things that won’t go according to that plan. Speak to all your medical professionals, write a list of pros versus cons for each scenario and make the best choice for you. Whether that involves having a natural, drug-free birth or a c-section under general anesthetic, as long as you and your baby are as safe as possible that’s all that matters.
The other thing I was told was that “second trimester is pure sweetness!” Yeah, not for me. Because my first trimester nausea was so slow to settle down, my feet began swelling at week 17 and my third trimester aches and pains decided to start at week 20, my second trimester was actually my worst trimester. I kept waiting to feel some relief from everything and that just didn’t happen. In fact, my best weeks were in third trimester, specifically weeks 30 to 35 when I felt the healthiest I had throughout the entire pregnancy. That is, until the pelvic pain began about a week ago.
There was also a significant improvement in my mental health at 30 weeks. I’m not quite sure why – possibly because I was told the baby was doing extremely well and I was doing even better at this thing called pregnancy. I suddenly had the confidence that it took so long for me to find which really helped prepare me for this final sprint to the end. It was also around 30 weeks when I really started to connect with the baby. While I had been talking to her since my eighth week of pregnancy, I could sense her starting to react to me and my movements by mid-third trimester. The most thrilling thing is now when I don’t feel her move for a while and my OCD starts getting the better of me, I just tap on the left side of my belly – where her back is located – and she usually responds to me within five to 15 seconds. It’s the only part of pregnancy I will actually miss when it’s over!
The other area where it’s okay to let go of any expectations is breastfeeding. Despite the “breast is best” messaging that is drilled into the brains of every new parent who owns boobs, it’s not necessarily the right choice for everyone. I do intend to breastfeed for at least a few months, mostly because my colostrum came in at 20 weeks (another thing that made me miserable at the time – what am I supposed to do with leaking boobs when baby isn’t due for another four and a half months?!?) and I think my milk production will likely be decent. But I was strongly against it up until then, mostly because all I could think about was reclaiming my body for myself after baby and honestly, there’s nothing wrong with that. I was told by one person that I was selfish, and Instagram mama culture would make me out to be a villain for even thinking this way. But even my friends who are pro-breastfeeding and did so until their kids were toddlers told me it was my choice and if I wasn’t comfortable with it then formula is there to ensure my baby gets everything she needs.
Something else I need to watch out for when it comes to breastfeeding is mastitis. This is dangerous to anyone, let alone people with cardiac conditions. Should I come down with mastitis, it could get into my bloodstream and that could carry dangerous consequences. I am looking to avoid this at all costs, which means we may end up exclusively formula feeding after all. At the moment, I have no expectations and I’m reminding myself that I should not feel guilty regardless of the direction I choose. What matters is that baby is well-fed and healthy, and I highly doubt she’ll come back to me at age 15 and scream at me if I don’t end up breastfeeding her. After all, no teenager wants to think about her mother’s boobs.
Ultimately, my intolerance to uncertainty and learning to go with the flow has certainly been tested by COVID but even more so by pregnancy, and I’d say I’m dealing with things better than I ever thought I would.
There will be moments that are downright shitty and you will feel you can’t go on. There will also be moments when you’re on top of the world. Or maybe you won’t experience either. Maybe you’ll actually love your pregnancy but have no connection to your baby. And maybe your baby inherits one of your health conditions and sets off a range of emotions for you. Or maybe your mental health is greatly impacted by the entire journey and you need to go on medication to function normally.
There’s no need to feel guilty in any of the above scenarios. Yes, it’s one thing to say and another to actually follow. I still feel such shame from wanting to end my pregnancy in the weeks immediately after I found out but I’m certainly not the only person in the world who experienced these emotions. It doesn’t mean you’re a terrible future parent – it just means you’re human.
And if you take just one piece of advice from everything I have written today, make it this one: NEVER stop advocating for your own health. Do not be afraid to call the doctor because they will think you’re a needy patient. Do not be afraid to ask those difficult questions. Do not be afraid to put yourself first. The best way to keep baby happy and healthy is by ensuring your needs are met and looked after. Nothing is off the table. Ask for assistance wherever and whenever you need it. Be kind to yourself and remind yourself every single day that you’re doing something amazing.
And if nothing else, I’m damn proud of myself for kicking ass in this pregnancy. Over the past 36.5 weeks, I’ve accomplished the thing that scared me the most to reach one of my biggest lifelong goals, and I’ve done a pretty good job at it if I say so myself.
Would I ever do this again for a second child? Ummm, probably not. Besides, I’m not sure we can even afford to have two kids while living in downtown Toronto.
But ask me again in three years.
I have to clarify that my pregnancy has been anything but a wild ride medically speaking. In fact, it’s been so textbook boring that I think all the specialists on my care team (five to be exact) were expecting they’d have at least one problem to troubleshoot. After all my doubts, it turns out my body has been strong enough and has held up better than expected against the demands of a little human growing inside my belly. My cardiologist has never sounded so happy, my gastroenterologist talks to me more about my parents and in-laws cultural traditions than my actual stomach issues, my OB doesn’t even bother coming in anymore during my now-weekly appointments and my psychotherapist says she’s seen incredible growth in me.
However, for me it’s been anything but smooth sailing. I’ll talk about all the challenges a bit later on but it turns out the girl with emetophobia was “blessed” with a pregnancy where the nausea never went away. It definitely improved as things progressed, but I would get these stretches of four to five days where I would think it was finally gone and then it would come back twice as hard. I finally saw a huge improvement in the queasiness when I went on maternity leave two weeks ago – no more worrying about looking green on Zoom meetings with my boss! But it doesn’t help that my biggest aversion throughout these past eight-plus months has been to mint and with having to follow strict dental hygiene due to my cardiac issues, it’s not like I could skip brushing my teeth. Yes, I know, there are other flavours of toothpaste but they’re hard to come by and who knows if they would have eventually become a nauseating trigger as well. I’m guaranteed at least two hours of mild to moderate nausea per day, usually in the mornings after brushing. The good news? I still haven’t thrown up, and I really don’t know how I haven’t. I’ve come close on so many occasions, although I stopped gagging mid-second trimester. I have also been told that people often throw up during c-sections so believe me, my mind is already concocting worst-case scenarios.
What I’ve failed to mention in these past three paragraphs is anything about our actual baby! Yep, there’s a huge reward coming at the end of this pregnancy hell. Baby is doing quite well from what we know and she’s got a good shot from the beginning because she didn’t inherit my heart condition! A fetal echo at both 12 and 20 weeks’ gestation showed no signs of any major heart defects. She has also been extremely active since I first felt her flutter at 12 weeks and now spends most of her days trying to find a way out of my uterus, which is actually very painful. Her movement is a bit more restricted now that I’m the size of Phoebe before she gave birth to her triplets on Friends, and of course that freaks my OCD mind out a bit. I never did kick counts despite being told to do so because I knew that would make my anxiety spike, plus I’m quite aware if she’s quieter than normal anyway as I am overly in tune with my own body.
Dennis and I also decided not to run any extra genetic testing on her besides the down syndrome screening test that is covered by our provincial government. We’ve seen examples where after dropping $800, these test results have been incorrect. If something does come up with the baby, we would rather not know about it ahead of time and we’ll deal as we go. It’s not like the results would have changed our plans: despite being strongly pro-choice, we would never abort if we learned our child had a serious disability because …. well, just look at how my life turned out and my odds were downright terrible!
So as I approach 37 weeks and I am hunkering down for the arrival of yet-to-be-named #BabyRosenChung2021, I wanted to share what it has been like going through pregnancy as a person with multiple disabilities during a global pandemic, as well as some advice for anyone who is considering pregnancy but is on the fence due to their health issues. I’m hoping my words will help someone in a similar situation feel less alone.
NOTE: The following contains some coarse and explicit language and may be TMI for some of my readers. There may also be some triggers in here for which I apologize in advance. Also, I have tried to occasionally substitute “pregnant person” for “pregnant woman” where I remembered to do so, as some transgender men and non-binary individuals are biologically able to carry a baby. If that applies to you, then you’re seriously a superhero! (I also apologize for the weird formatting of the subheadings. I gave up after trying to edit them 10 times!)
1. Being pregnant during COVID hasn’t been all bad
Anyone who has experience with a prior pregnancy before all hell broke loose and then had a subsequent pregnancy in 2020 or 2021 might disagree, but for those of us on our first pregnancies, we don’t know the difference! It’s definitely been an extremely scary and uncertain time to have a tiny human on board and I never expected that I’d be delivering said human at the high point of the second wave. However, being pregnant during COVID-19 gave me the freedom to work from home and not have to worry about facing my coworkers every day while feeling like absolute garbage. It also has given me the best excuse to stay off of public transit, something I had planned to do anyway while pregnant because I pick up so many bugs from riding subways, buses and streetcars in the first place. You absolutely do not want to get sick during pregnancy, even more so if you have underlying health issues. Mandatory mask wearing makes me feel even better protected (outside of the idiots who refuse to wear masks. I will reserve any further judgement on those fine folks) and while social distancing sucks, it also means I don’t have to “pretend” that I am fine while in front of friends because outside of a few park visits over the summer, I’ve barely seen anyone over the past 11 months. Best of all, one of my best friends threw us a virtual baby shower that rivalled any in-person party we’ve ever had. It was so much fun and it enabled for us to connect with people all over Canada and the US. Had COVID not been a factor, I would have likely been freaking out about catching a cold or flu from an in-person shower.Post-baby birth, we won’t be having any visitors outside of socially-distant get-togethers with our parents, which also thrills me because the last thing I’d want while recovering and getting to know my daughter is a revolving door of guests. Ultimately, COVID has given me the best excuse to protect myself, Dennis and our little baby from any harm.
2. I’ve been on various medications my entire pregnancy – and that’s perfectly okay!
For women without underlying health issues, taking any medications – even Tylenol which is proven to be completely safe! – is seen as “bad for baby.” And certainly there are medications out there that under no circumstances should be taken during pregnancy. However, for many commonly prescribed medications this is not the case. Sometimes it requires a dosage or timing adjustment, or it has to be avoided in first trimester but is safe to take in second and third. And often it comes down to a benefits versus risks scenario: if the benefits are higher to the pregnant person than the risks are to the baby, then being on certain medications might be the right choice for you.Because of my never-ending nausea, I have been on Zofran since five days after finding out I was pregnant. Zofran doesn’t exactly have a perfect record and there are some small risk factors, but without it I would not have been able to survive this pregnancy. I’ve managed to stay on small doses, only taking 12 mg per day at my worst – below the recommended dosage – and I have only taken 4 mg per day since I hit 18 weeks. I also couldn’t have gotten through my first trimester without Gaviscon, an over-the-counter reflux drug which of course has a pregnancy warning slapped onto it, but if you read the small print it’s still absolutely fine to consume provided you don’t chug it like beer. In addition, my daily prescription medication for GERD was doubled and considered perfectly safe.
Perhaps the most shocking is that I was given the green light to continue taking Amitriptyline throughout the entire pregnancy. This tricyclic antidepressant that has been around since the 1960s is now used for pain control for women with vulvodynia and interstitial cystitis (IC) like myself. The majority of people with these conditions are told by their physicians to get off Amitriptyline before they even try to conceive. As a result, those in my online vulvodynia and IC groups are shocked to find out that every doctor on my care team said I could stay on it throughout my pregnancy. Yes, it can be dangerous to the developing fetus if taken in high doses, but at 25 mg per day all my doctors told me it was perfectly safe and I had nothing to worry about. And believe me, I couldn’t have gotten this far without it (more on pelvic pain and pressure coming up).
Meantime, pregnant people are strongly encouraged – if not downright ordered – to take prenatal vitamins, not only throughout the 40 weeks’ gestation but sometimes well before then, including during the period of trying to conceive. While I did start folic acid a good four months before I learned I was pregnant and have stayed on it throughout, I have never taken prenatal vitamins. These can be extremely hard on the stomach and for someone like me, would likely be difficult to tolerate. My doctor told me if I could stick to the folic acid alone, that would be good enough for her. Instead of prenatals, I made sure I ate a solid, balanced diet. It wasn’t always easy to do during first trimester but it helped that I mostly craved healthy foods. Outside of a few days, I was still able to eat chicken, beef and fish, although I still can’t tolerate any ground meat. I substituted frozen berries and Activia yogurt for desserts, green and orange veggies for carbs (where I could), granola bars, figs, prunes and nuts for snacks and green smoothies, vegetable and cranberry juice for pop. I also upped my intake of the vitamins I could tolerate – C and D. I have to say that despite the nausea and heartburn, this is the healthiest I have ever eaten in my life and I’ve certainly reaped the benefits, if not downright enjoyed most of my meals.
The moral of the story is, advocate for yourself and find out what is safe to take – both medications and vitamins-wise. Do your research and ask plenty of questions. You don’t need to suffer through pregnancy or be a martyr. Remember there was once a time where people drank through their entire nine months and smoking wasn’t given a second thought, and most babies still turned out okay … most. And don’t you think that pregnant people in other parts of the world still consume raw fish, runny eggs and cured meats? Of course they do! I’m not suggesting you head to the nearest sushi house and down a plate of sashimi with sake after taking 400 mg of Amitriptyline, but stay informed, speak with your health care team and stand up for your own health. After all, flight attendants do tell you to put your mask first before helping anyone else when heading into a crash scenario.
3. You can have a perfectly healthy pregnancy and still feel like crap!
I’m glad I didn’t know this one before heading into this journey as I might have changed my mind about wanting to carry my own child, but this is absolutely true in every way. I’ve read so many stories about women suffering from debilitating hyperemesis gravidarium (HG) who throw up 20 times a day and exist on nothing but iced tea and gummy bears for nine months, and then they end up having large, healthy babies. As mentioned earlier, my pregnancy has been textbook normal and downright boring for medical experts. Still, that didn’t stop every single pregnancy symptom in the book from not only hitting me, but hitting me twice as hard as what I expected. Besides bleeding gums, I can’t think of a pregnancy symptom I haven’t experienced. When you have underlying health issues, everything seems to pack a bigger punch. Case in point, my end-of-pregnancy pelvic pain is excruciating to the point where I’ve been told to head to labour and delivery and ask for the baby to be taken out a bit earlier than planned should things get any worse. But I’m now on day seven of feeling like my bladder – and the baby – will just rip off and slide out of me and I’ve managed to (barely) get through it.The good news is, the opposite does not ring true. While my mom had a terrific pregnancy, did everything correctly and yet I still came out fucked up, women who have little-to-no pregnancy symptoms can also have perfectly healthy babies and for the most part, they do. Ultimately, whatever you experience in your pregnancy isn’t necessarily an indication that you or your baby are in bad health. Stay in tune with your body and speak with a medical professional if you have any concerns, and with that said …
4. WhatToExpect.com, TheBump.com and similar websites do not have all the answers!
Your average pregnancy website is written for a person with no underlying medical conditions who is just so overly joyous about their baby journey that their entire lives revolve around decorating their nurseries and posting bumpshots on Instagram. That’s not to say that there’s anything wrong with that, but for a person with disabilities or a chronic illness, reading these weekly “bumpdates” can leave you feeling rather alone. You may find a brief article on what pregnancy is like if you use a wheelchair, as if that’s the only disability there is, but for people like me, there’s literally NOTHING to refer to except a few scientific papers and some blogs from others like myself. There’s no WhatToExpectWhenYouHaveADisability.com and to be fair, how could there be when everyone’s experience is different, even in the range of what’s considered normal?The advice I was given at my high-risk pregnancy clinic was to avoid those websites entirely. I haven’t exactly listened and I continue to check them out week by week because some of the information can be useful. But what I’d give to see a mainstream website that details what you can expect each trimester if you have a congenital heart defect, IC or irritable bowel syndrome. It would be so great to see more representation of pregnant people like us in the media because we now exist in greater numbers than ever before thanks to modern medicine and care that enables us to carry safely. Now we wait for the rest of the world to catch up.
5. It’s okay to absolutely hate your pregnancy
This is a tough one for me because I feel so much guilt. Here I was absolutely terrified of getting pregnant due to all my physical and mental health issues. There wasn’t even a thought that I could possibly do this until our surrogacy arrangement fell apart and we were left wondering what our next move was. But once we made up our mind, we got pregnant naturally on our first try. I figured due to my age and several other factors, we would still be trying to conceive a year later and would at least need assistance in the form of an IUI. However, even with the stress of COVID lurking in the background, we managed to achieve the goals of the new plan in one 10th the amount of time it took us to arrange our original plan.When I’d try to find stories similar to mine – and of course majorly strike out! – all I would read were heartbreaking stories about infertility, and what women would give just to be hovering over the toilet all day because it would finally mean that they got two lines on a pregnancy test. I felt absolutely awful about getting pregnant so quickly, when so many of my friends went through four, five or even eight-year-long infertility journeys. Even worse, I felt shame for complaining about my morning sickness and other symptoms when some people would literally cut off their arm or leg just to finally be pregnant.
The message here is, it’s okay to hate your pregnancy whether you conceived immediately or it took you five years and 10 rounds of IVF to get there. It doesn’t mean you hate your unborn child or you’re ungrateful for being on this journey. Pregnancy is fucking hard on anyone, let alone for someone with disabilities or someone who has had to take a million shots in their stomach and butt to get to this point. It’s okay to admit you’re struggling and that you’re miserable, even if you’re over the moon about the end result.
Furthermore, you don’t have to embrace these changes in your body. I’m not going to lie – pregnant women do look amazing. In fact, I believe the sicker you are, the more you glow all thanks to your crazy hormones. But popular culture (*cough* INSTAGRAM *cough*) has put pregnancy on a pedestal that can make us feel really bad if we don’t love or want to celebrate our new look. Personally, I hate what pregnancy has done to my body. I spent nearly two years getting in shape via strength training and Pilates and for the first time in my life, I loved the way I looked. Pregnancy quickly undid all that and now I’m just counting down the days until I can safely get back to my usual exercise routine. At the same time, had I not been going to the gym and exercising regularly, maybe I wouldn’t have had the physical strength to survive this pregnancy.
As Alexis Rose from Schitt’s Creek would say, “I love that journey for me,” or maybe I should paraphrase her by saying “I accept this journey for me.” Your experience is unique to you and you do not need to be like anyone else. Complaining about your pregnancy symptoms or weight gain does not have any link to your ability to be a good parent to your unborn child. Despite me hating 98.5 per cent of my pregnancy, those moments getting to bond with my daughter who I have been able to grow myself have made everything worth it. As much as I feel ready to break from how challenging these past eight months have been, I also love this baby so much that I cry on a semi-regular basis (okay, at least once per day).
6. Have a detailed birth plan that works for you and your health conditions
I cannot stress this enough. As mentioned earlier, I am undergoing a c-section in about two weeks, at 38 weeks and five days’ gestation. My OB and I came to a joint decision on this method of getting baby out of me as I entered my sixth month of pregnancy, and it’s not for reasons you may think. Cardiac-wise, I am likely good to withstand the stress and pain of a ‘natural’ vaginal birth. As for my pelvic floor, not so much. Considering the pressure and strain on both my bladder and vagina over these past eight-plus months, the least risk of damage and long-term pain comes from having baby taken out surgically. Could I go into labour earlier? Perhaps, but I’ve quadruple-checked and yes, I can still request a c-section if this happens, unless she happens to slide out on our 10-minute drive to the hospital (and wouldn’t I be lucky if that was the case!).It’s also a huge benefit for people who struggle with anxiety around uncertainty to know exactly what date their baby will arrive. For me, knowing this pregnancy has an end date has really helped me to focus on the end goal. Only two more weeks of nausea! Only two more weeks of feeling like a beached whale! Only two more weeks of barely being able to climb a flight of stairs! And best of all, only two more weeks until I meet my little girl who will be delivered in the safest manner possible for both her and me.
Unfortunately, and again this all comes down to mainstream pregnancy (*cough* INSTAGRAM *cough*) culture, there’s a huge push (no pun intended) to deliver vaginally and in many cases, without any pain medication – as if women can only prove their strength via suffering. Yikes! I can’t tell you how much I fucking hate this belief! I do understand that no one wants to go through surgery if they can fully avoid it, especially for someone who has never had to spend a night in the hospital, and there are definite drawbacks of having to recover from a major operation while learning to care for a newborn. Furthermore, there are women out there who actually enjoy giving birth. However, there are some countries where c-sections are considered the norm or are encouraged. Choosing this option should never be seen as a sign of weakness. I even wondered at first if by asking to go this route I was taking “the easy way out,” but when it comes to pregnancy there really is no easy way out. And if I've learned anything in my 36 years, I know I do surgery well. I also have previous experience with abdominal surgery so I have a bit of an idea of what to expect.
It’s so important – especially if you live with disabilities – to have a detailed birth plan or at least a wish list, with some wiggle room for things that won’t go according to that plan. Speak to all your medical professionals, write a list of pros versus cons for each scenario and make the best choice for you. Whether that involves having a natural, drug-free birth or a c-section under general anesthetic, as long as you and your baby are as safe as possible that’s all that matters.
7. Don’t have any expectations – just go with the flow
Among the things I was told that didn’t end up ringing true: “your nausea will go away at 14 weeks!” Naturally, when it didn’t go away at 14 weeks, nor at 18 weeks, nor at 22, I was a mess. How could I go an entire nine months of pregnancy like this? Well, I have and that’s just the way it worked out.The other thing I was told was that “second trimester is pure sweetness!” Yeah, not for me. Because my first trimester nausea was so slow to settle down, my feet began swelling at week 17 and my third trimester aches and pains decided to start at week 20, my second trimester was actually my worst trimester. I kept waiting to feel some relief from everything and that just didn’t happen. In fact, my best weeks were in third trimester, specifically weeks 30 to 35 when I felt the healthiest I had throughout the entire pregnancy. That is, until the pelvic pain began about a week ago.
There was also a significant improvement in my mental health at 30 weeks. I’m not quite sure why – possibly because I was told the baby was doing extremely well and I was doing even better at this thing called pregnancy. I suddenly had the confidence that it took so long for me to find which really helped prepare me for this final sprint to the end. It was also around 30 weeks when I really started to connect with the baby. While I had been talking to her since my eighth week of pregnancy, I could sense her starting to react to me and my movements by mid-third trimester. The most thrilling thing is now when I don’t feel her move for a while and my OCD starts getting the better of me, I just tap on the left side of my belly – where her back is located – and she usually responds to me within five to 15 seconds. It’s the only part of pregnancy I will actually miss when it’s over!
The other area where it’s okay to let go of any expectations is breastfeeding. Despite the “breast is best” messaging that is drilled into the brains of every new parent who owns boobs, it’s not necessarily the right choice for everyone. I do intend to breastfeed for at least a few months, mostly because my colostrum came in at 20 weeks (another thing that made me miserable at the time – what am I supposed to do with leaking boobs when baby isn’t due for another four and a half months?!?) and I think my milk production will likely be decent. But I was strongly against it up until then, mostly because all I could think about was reclaiming my body for myself after baby and honestly, there’s nothing wrong with that. I was told by one person that I was selfish, and Instagram mama culture would make me out to be a villain for even thinking this way. But even my friends who are pro-breastfeeding and did so until their kids were toddlers told me it was my choice and if I wasn’t comfortable with it then formula is there to ensure my baby gets everything she needs.
Something else I need to watch out for when it comes to breastfeeding is mastitis. This is dangerous to anyone, let alone people with cardiac conditions. Should I come down with mastitis, it could get into my bloodstream and that could carry dangerous consequences. I am looking to avoid this at all costs, which means we may end up exclusively formula feeding after all. At the moment, I have no expectations and I’m reminding myself that I should not feel guilty regardless of the direction I choose. What matters is that baby is well-fed and healthy, and I highly doubt she’ll come back to me at age 15 and scream at me if I don’t end up breastfeeding her. After all, no teenager wants to think about her mother’s boobs.
Ultimately, my intolerance to uncertainty and learning to go with the flow has certainly been tested by COVID but even more so by pregnancy, and I’d say I’m dealing with things better than I ever thought I would.
8. You do you is the best motto!
As I said, it’s challenging enough to be pregnant when you’re in perfect health and have no underlying medical conditions. Dealing with disabilities or chronic illness adds an entire new layer to carrying a baby.There will be moments that are downright shitty and you will feel you can’t go on. There will also be moments when you’re on top of the world. Or maybe you won’t experience either. Maybe you’ll actually love your pregnancy but have no connection to your baby. And maybe your baby inherits one of your health conditions and sets off a range of emotions for you. Or maybe your mental health is greatly impacted by the entire journey and you need to go on medication to function normally.
There’s no need to feel guilty in any of the above scenarios. Yes, it’s one thing to say and another to actually follow. I still feel such shame from wanting to end my pregnancy in the weeks immediately after I found out but I’m certainly not the only person in the world who experienced these emotions. It doesn’t mean you’re a terrible future parent – it just means you’re human.
And if you take just one piece of advice from everything I have written today, make it this one: NEVER stop advocating for your own health. Do not be afraid to call the doctor because they will think you’re a needy patient. Do not be afraid to ask those difficult questions. Do not be afraid to put yourself first. The best way to keep baby happy and healthy is by ensuring your needs are met and looked after. Nothing is off the table. Ask for assistance wherever and whenever you need it. Be kind to yourself and remind yourself every single day that you’re doing something amazing.
Conclusion (and thanks for reading this far)!
One of my blog posts in 2019 was entitled “The Two Week Wait,” as we sat on pins and needles waiting to find out if our embryo transfer worked. It’s now another two-week wait for us, but this time it’s about meeting our daughter for the first time. I’m still so terrified something will go wrong and this massive amount of joy will be ripped from our hearts, but I’ve also never been so excited in my life for what’s to come. I imagine holding her for the first time and bawl my eyes out. While I can’t picture her past infancy at this point, I keep thinking about just how amazing it will be after holding everyone else’s baby to finally hold my own.And if nothing else, I’m damn proud of myself for kicking ass in this pregnancy. Over the past 36.5 weeks, I’ve accomplished the thing that scared me the most to reach one of my biggest lifelong goals, and I’ve done a pretty good job at it if I say so myself.
Would I ever do this again for a second child? Ummm, probably not. Besides, I’m not sure we can even afford to have two kids while living in downtown Toronto.
But ask me again in three years.
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