Janilyn’s Story

Sometimes I think about the girl I was before miscarriages and infertility consumed my life. I wonder what she would be doing now or what kind of person she would be. It’s been almost ten years since my first miscarriage and yet it doesn’t feel as long ago and far away as the person I used to be does.

It’s still difficult to express all that took place and how it affected me then and how it affects me even now. All of my losses were difficult and traumatic but the first one broke me in a way I didn’t know was possible. It was like a collision between my worst nightmare and the dream I never knew I had. You see, back then, I wasn’t sure if I ever wanted to have kids. I was 32 and my life had not been the easiest but things were finally falling into place for me. I was finally on my way to having my dream career and the life I thought I wanted. So, when I found out I was pregnant in 2013, my husband and I were stunned. The selfish part of me wasn’t ready for my life to change and the root of all my anxiety was that I was worried I wasn’t cut out to be a mother. I don’t know why but I was terrified I’d be bad at it. I felt like a knight without armor.

As soon as the initial shock wore off, I started getting excited about the idea of having a baby. We talked about names and nursery themes and looked at baby clothes. I was still nervous but my heart was full and I was so excited. I couldn’t wait to see that sweet little face and hold him or her in my arms. But that joy was short lived. A few weeks later I started bleeding. I knew that wasn’t a good sign but I scoured the internet for stories of bleeding in early pregnancy that turned out fine. I was desperate for any sliver of hope I could find.

 I got an appointment with an ob/gyn as soon as I could. Lab work confirmed my pregnancy and that my HCG was over 67,000. Of course, we had no idea what that meant or what HCG was. My doctor explained that I was likely pregnant with twins. Twins! We were still adjusting to the idea of having one baby but now there were going to be two babies! A double blessing! As for the bleeding, she echoed what I’d found on the internet and told me that it was fairly common and was nothing to worry about. She told me to come back in two days to check my HCG again. She said it should double.

But it didn’t. It went up slightly but not enough. She said it was possible I was losing one of the twins and that’s why I was bleeding. She said that was common too and ordered more lab work sent me to the hospital across town to have an ultrasound. During our ultrasound, I was trying to process everything that was going on. I hoped to see my babies on the screen but that’s not what happened. The tech was quiet and avoided all my questions. I knew that was a bad sign but I was still clinging to hope that everything would be ok.

But it wasn’t. After what felt like an eternity, the doctor came in and confirmed that there were twins but that one sac was empty and the other had something in it but there was no fetal pole. I didn’t understand what he was saying so I asked him that meant. He told me I was going to have a miscarriage. He spoke with such nonchalance he might as well have been talking about the weather. Then he started asking me questions about my uterus, whether it was bicornuate or septate. My head was spinning. My heart was breaking and everything in my world was crashing down around me and I had no idea what he was talking about. I told him I didn’t know what those words meant and started to cry.

I’m sure he was probably busy and stressed but his reaction was so impatient and unkind. Instead of taking a moment to explain what a bicornuate uterus was, he thew his hands in the air and walked out without saying another word. The tech told me that she would send the report to my doctor. I didn’t know what to say. I didn’t know what to do. Somehow in the span of two days I went from thinking I was pregnant with just one baby to being pregnant with two and then thinking I was losing one to learning that I was actually losing them both. It was a lot to process and I didn’t know what a bicornuate or septate uterus was but I figured if it was important my doctor would talk to me about it.

But she didn’t. And I didn’t think about those words again, at least not for another year. What my doctor did tell me was that it was common for a woman’s first pregnancy to end in miscarriage and that it was unlikely to happen to me ever again. She said these things just happen and sometimes no one knows why. I asked her what I was supposed to do. I didn’t know how to have a miscarriage. As unprepared as I’d once felt about becoming a mother, I felt exponentially more unprepared to lose my babies. She told me it would be like a heavy period and sent me home.

Because I didn’t know anyone who’d had a miscarriage before, I didn’t know what to do and I had no one to talk to. After she found out we were expecting, my sister-in-law said some very cruel things about me. To this day we don’t know why she said them. We weren’t overly close but we’d always gotten along well enough so her words cut very deeply. At first, my mother-in-law was horrified by what she’d said but ultimately decided to stand by her daughter instead of with her son who had just lost his babies. So, we were on our own.

I read a lot of forums online about miscarriages so I could get an idea of what to expect. I thought it would happen within a few days but I was wrong. Because my HCG was so high, it took awhile for it to drop low enough for the miscarriage to begin. I can’t even begin to explain what a sick joke it felt like to still have pregnancy symptoms like morning sickness and nausea but not actually be pregnant. I felt like I was losing my mind. I even entertained the idea that maybe the doctors were wrong so I took a pregnancy test. It came back positive but only because my HCG was so high. As much as I wished the doctors were wrong, they weren’t. My pregnancy was over, my body just didn’t know it yet.

Almost a whole agonizing month passed before it began. Finally, one Saturday morning I started spotting. It was very light and there was no cramping. I thought that maybe that’s all there would be to it and it would be over quickly. But that’s not what happened. The bleeding increased throughout the day and the cramping became more intense too. By 1 am, I was in so much pain I was unable to move. I’d read so many online forums about miscarriages that I thought I was prepared.

But I wasn’t. None of the forums I read mentioned that it was possible to have contractions but that’s what happened. First, they were three minutes apart. Then two. Then one. As soon as it was over, I crumpled to the floor and wept. I’d never been so exhausted in my life and I never knew emptiness could feel so heavy.

We thought his family would rally around us but that’s not what happened. We never heard from his sister, not even a text to offer condolences. His dad was sad for us and so was his mother, though she was quick to tell me that at least my loss happened early and that they weren’t really even babies yet. That hurt to hear but nothing hurt so much as losing my babies. We were so sad and somehow, we had to find a way to navigate this loss on our own. I can’t speak for him but I can say that looking back, I wish I’d gone to a therapist. I was slipping away and desperately needed someone to talk to but I had no one. The only person I had was my husband and he was trying to survive just like I was.

In the weeks that followed I developed an intense hatred for my body. I saw it as the enemy that failed my babies. I started counting my calories and it felt kind of good to be able to control something. Then I started restricting my calories. The more I restricted, the worse my body felt but the better I felt inside. At some point it became an eating disorder. I gained so much satisfaction from denying my body what it needed. I couldn’t keep my babies from leaving my body but I could control what I put in it so that’s exactly what I did. It went on for months. I was wasting away and my husband was too depressed to notice.

I’m positive that I would have needed medical intervention for my eating disorder if I had not found myself pregnant again in 2014. I was so happy that I stopped obsessing over my calories as much and shifted my focus to my pregnancy. As luck would have it, my due date was exactly the same as my previous pregnancy. It felt like a second chance. I was so happy. Everything felt right. And then I started bleeding… again. I went to my doctor and she assured me I was fine. She said my HCG looked good and that it was too early for an ultrasound but that at least it wasn’t ectopic. I was given some progesterone and sent home.

My husband felt hopeful but experience and my gut told me something was wrong. The next night I passed out in a Chili’s and was rushed to the hospital in an ambulance. It turned out that my doctor had been wrong and my pregnancy was a type of ectopic. It was a cornual ectopic, the most rare and dangerous type of ectopic. It occurs when an embryo implants in the horn of a bicornuate uterus, where the tube meets the uterus. My embryo had been growing and ran out of room, causing my right tube and the right corner of my uterus to rupture. I lost three liters of blood internally and almost died.

The on-call doctor had never encountered this type of ectopic before. She asked my husband how many kids we had because a hysterectomy made the most sense. He told her we had none her face fell. She said there was a procedure she could do but she’d never done it before and it might not work and she still might have to do the hysterectomy, but it was worth a shot. So, she called a doctor who had performed a wedge resection and he walked her through it. The right corner of my uterus had ruptured and was gone but she took what was left and folded it in on itself and sewed it up. And if the term bicornuate uterus sounds familiar, it’s because that’s what the doctor kept asking me about a year before with my first miscarriage. If only he or my previous doctor had told me that I had a bicornuate uterus, I would have surgically corrected it and wouldn’t have had another miscarriage.

I started seeing the on-call doctor and she referred me to a fertility specialist who surgically corrected my uterine abnormality in 2015. She believed that’s what caused my first two miscarriages and even though I was missing a tube and a chunk of my uterus, she believed I would have no issues getting and staying pregnant in the future. Sure enough, I was pregnant later that year. Because all my issues were resolved, we were excited and hopeful. Even I, who had become so jaded and bitter, let my guard down and felt joy for the first time in years. I just knew this was the one.

But it wasn’t. At my ultrasound, I lay there, excited to finally see my baby but that’s not what happened. My uterus was empty. My doctor said she believed this was an ectopic, not like the one I had the year before but the more common type where the embryo implants in the tube. Honestly, I don’t remember everything she said because I just stopped listening. How on earth could this be happening to me…again? My first doctor had said it would be very unlikely for me to even have a second miscarriage and here I was about to have my third. What were the odds of three miscarriages in a row?

I remember asking if it was possible for the embryo to move from the tube into the uterus if we gave it more time. She said it wasn’t and because it was my only tube and could become life threatening if I left it, I’d need to take a shot that would effectively end my pregnancy. And let me tell you, of all the things I’ve ever done in my life, making that decision was the hardest thing I’ve ever had to do. I know it was the right call but at the time, I felt like a monster and I carried that guilt for years.

In the weeks that followed, I slipped into a deep depression. My eating disorder resurfaced and this time, brought a friend with it, self-harm. I was so angry at my body for failing yet again that I wanted to punish it. I know how it sounds now but it made so much sense to me at the time. With my first two miscarriages, there was extreme physical pain but with the third, there was no pain at all. I just took a shot and it was over. My body absorbed it and it was like it never existed at all.

I was such a broken mess. I started cutting myself on the bottom of my feet. I know that’s not the typical location but I knew I had to keep it a secret and there was a messed-up part of me that wanted to feel pain with every step. Honestly, I was just so desperate to feel anything. I was spiraling out of control. My husband was too. With the previous two losses, he had always been such a steadying presence but this one broke him. We still had no family support and were left to navigate this new loss on our own yet again. We drank more than we should have and we fought more than we should have. We hurt so deeply. There were some days we couldn’t stand the sight of each other and yet all we had were each other. No one else understood the pain of my loss as keenly as he did. We were two broken people trying to lead each other out of a tragedy and honestly, I don’t know how we made it out of that loss alive and still married.

A year later in 2016, I was doing better. I wasn’t great but I was no longer cutting and my eating disorder was less intense but not completely gone. The ridiculous rules and restrictions I’d set for myself didn’t disappear just because I was in a healthier mental place. It was, and to an extent, always will be, a struggle.

 The following year, I had an IUI but it failed. My doctor said I just had “bad luck,” which wasn’t very comforting or helpful. I asked her if we should try IVF and she told me that it would never work for me because of the scar tissue in my uterus from the surgery that saved my uterus. Ironic, huh? The very surgery that saved my uterus was the very reason IVF wouldn’t work for me. I was crushed, yet again. I was so bitter and angry with God that I spent the next two years running away from Him. What was the point in saving my uterus if I would never be able to get pregnant anyway? It seemed like such a cruel joke.

But in 2018, I stopped running from God and started running toward Him and an absolute miracle happened. I was pregnant again. By then we lived in a new city and I found a new doctor. I was 37 and a wholly different person than I had been five years prior. It finally felt right. An ultrasound revealed the baby was safely implanted in my uterus and even though it was early, everything looked fine.

But it wasn’t. One day, I woke up and I the queasiness I had been feeling was suddenly gone. I knew something was wrong. Again. I told my husband I thought something was wrong and he thought I was being paranoid because of my history. He refused to believe anything was wrong because this was our miracle pregnancy. He assured all was well and that I was going to have that baby.

But that’s not what happened. I started bleeding. I went to the emergency room and the doctor confirmed I was miscarrying. Again. For the fourth time. Four miscarriages in a row. And that was the end of our miracle pregnancy. But this time, instead of running from God, we ran toward him even more. I wasn’t working at the time so I spent hours listening to and singing along to worship music. I sang those songs with tears running down my cheeks and with gritted teeth until I believed the words I was singing.

In 2020 I turned 40. There had been no more pregnancies. I knew that my biological clock was nearly out of juice and I tried desperately to make peace with that. I asked God to remove the desire to be a mother from my heart but He never did. I begged to understand why my uterus was saved in 2014 if I’d never be able to use it. I struggled to make sense of it all and to accept that those answers may never be revealed to me.

In 2021 my husband agreed to one last shot. I made an appointment with a reproductive endocrinologist to discuss IVF. My first fertility doctor had said it would never work but we thought it was worth getting a second opinion. At our consultation, I showed him my extensive file and despite my age and rare, high-risk situation, he told me he believed IVF would work for me. He was so confident that my issue now was embryo quality due to my age. But he said that I still had good eggs and with the right medications, he would be able to get them. So, I left that appointment with more hope than I had in a very long time.

We got started the next month. After ten days of stims, where I gave myself multiple shots per day, I had an egg retrieval. Five days later we found out we had 3 embryos. We were so excited. We waited on pins and needles for the results of the genetic testing to come back. About two weeks later, I received a phone call from my doctor’s office.

“You have three female embryos.”

My heart leapt.

“But they’re non-viable.”

My heart sank.

I got off the phone and curled up on the floor and wept like I hadn’t in years. It really felt like the end of everything. I felt like such a fool, for believing in a miracle, for opening up my heart again to hope and for spending so much money on something that was a waste of time and resulted in the loss of three embryos. I didn’t even want to go to my follow up appointment the next day.

But I did. My doctor told me the embryos would be early miscarriages like my last pregnancy, due to embryo quality, probably due to my age. I went into that appointment ready to give up but my doctor refused to give up on me. When I suggested we use donor eggs instead of trying to get mine, he said no. He was already thinking of ways to change my protocol and wanted to start again in a month and believed he could get those good eggs

So, that’s what we did. The new protocol was more intense and more aggressive. There were more pills and more shots. At my egg retrieval, we got 12 eggs, two more than the previous retrieval. Five days later I had five embryos to be sent away for genetic testing. A few days after that, the results were back. I had two viable embryos. A boy and a girl. As soon as my nurse told me the news I burst into happy tears. We transferred our little girl last December and a week later, a blood test confirmed that I was pregnant.

At six weeks, I started spotting. I’d been down this road before so I knew exactly what this meant. I had an appointment that same day for an ultrasound but I didn’t see the point in going. After bright red blood ran down my legs, I called to cancel but my nurse convinced me to come in anyway. The whole drive there, I prepared myself for the worst. If there was anything I was good it, it was losing and I just knew it was over.

But it wasn’t. As I lay there waiting for my doctor to confirm yet another miscarriage, I was speechless when he told me there was a heartbeat. I didn’t believe him so he turned up the volume and for the first time in nine years of getting pregnant and miscarrying, I heard a baby’s heartbeat… MY baby’s heartbeat. It was the most beautiful sound in the whole world and I’ll remember it for the rest of my life.

It turns out the bleeding was caused by a subchorionic hematoma which is very common in IVF pregnancies but my baby was doing great. My doctor assured me this would be a normal pregnancy and though I had my doubts and fears, he was right. On August 3, 2022 at 41 years old, I had an emergency c-section and our sweet Aurora was born After a few agonizing moments of silence, we were told she was unable to breathe and the NICU team rushed her away. My husband was terrified but I knew in my heart that she was the one. I knew she would be ok.

 Because she was a preemie, her lungs weren’t quite ready but they were able to put surfactant in them to help her breathe. She was tiny but she was a fighter. In the days that followed, we watched her grow and reach new milestones like getting off the CPAP mask, removing the feeding tube and learning to pace herself with a bottle. Finally, after sixteen days we were able to bring her home.

As I write this, my almost four-month-old is in my arms, staring up at me oh-so sweetly and smiling, the cutest little spit bubble forming at the corner of her perfect little lips. It was a very, very long road to get here. I lost so much along the way– babies, friends, family, and at times, I felt like I was losing my faith. But I made new friends who have become more like family and never stopped believing in our miracle and loved me even when I was hard to love. I also grew closer to God and learned to rely on Him in a way that I’d never done before. I’ll always miss my babies and wonder about the little people they would have become but I find comfort in knowing that I will hold them someday in Heaven.

I lost myself, too, at least the person I thought I was and wanted to become. But what I found was the person I never knew I wanted to be. When I think back to the version of me that was obsessed with building the career I thought I wanted, I have to laugh. That “dream job” turned out to be more of a nightmare and I left it years ago to focus on my new dream, becoming a mother. Every dream, hope and prayer I’ve ever imagined and the ones I never imagined, I have found in the most innocent pair of steely blue-gray eyes I’ve ever seen. My arms are finally full and my cup runneth over.

Janilyn wears a pink top and the rainbow skirt.  She holds her baby and stands against a tree with the skirt spread out on the ground around them.

Janilyn wears a pink top and the rainbow skirt. She holds the skirt with both hands out in front of her on top of some green grass.

Janilyn wears a pink top and the rainbow skirt.  She holds her baby in her arms.  There are big trees in the background.

Janilyn wears a pink dress and the rainbow skirt. She holds her rainbow baby.

Janilyn wears a pink dress and the rainbow skirt. She holds her rainbow baby and stands against a tree.  The sun shines through the trees in the background.

Janilyn wears a pink dress and the rainbow skirt. She holds the rainbow skirt out to the sides with both hands.

Janilyn wears a pink dress and the rainbow skirt. She stands under an archway.

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