Pregnancy & Infant Loss Remembrance
I am apprehensive to share our infertility journey. It's personal, and it's raw. It was comforting to me to hear the details of others journeys, to have realistic explications and to see there is hope even when it doesn't feel like it will ever end. It's also so misunderstood by those who haven't been impacted by it. So, I decided to share my whole story. Fair warning, this will be long and I talk about loss.
In the beginning everyone assumes they can get pregnant in 3 months, that's based off the stats, and the general socially acceptable timeline. Plus, most of us from an early age through SexEd are hardwired to be paranoid of getting pregnant. We are not taught, or prepared for that fact that this will be difficult for 25% of us, and even consume some of our adult lives.
When I got married, we were in the 'not-really-trying, but-not-trying-not-to' phase for about a year fully thinking we would get a surprise at some point. Nothing happened, and we were thinking it's just because I'm irregular and we need to monitor the days better.
Then we moved into the next phase, actually trying. This started with a package of ovulation prediction kits arriving at the door. If you aren't familiar with this glamorous process, you pee on a stick each day until you get a smiley face that signals ovulation. After months, that wasn't working for us.
Hubs then did some research and ordered an expensive fertility monitor. They cost about $300 at the time, and you use a couple sensors to track and predict ovulation. Allegedly. They boast about how accurate they are and how they have a community of experts to help you. I did the tracking for a few months, consulted their "experts", who only told me to keep trying, but did not have the results we were so hopeful for. Candidly, I feel these companies can and should do a much better job to identify and then educate you when you have clear signs that their product is unlikely to help you.
Enter the professionals
It wasn't all a waste of time because my OB requires that you try with tracking for a year if you're under 35 years old before they'll schedule an infertility assessment. That's what came next, we met with the OB thinking we would get a prescription and a date for IVF, we quickly learned that is not at all how this works. The first appointment is basically a large questionnaire you and your partner answer then you both leave with lab orders for blood tests and instructions to schedule a Hysterosalpingogram (HSG), a procedure done in radiology to see if there are blockages in your fallopian tubes.
The internet made it sounds like the HSG is torture, it wasn't fun, but it really wasn't that bad. You go to radiology where they insert a catheter used to inject dye, then they inflate a balloon to push the dye out your fallopian tubes. If the dye seeps out it means they are open and that's what you want. There was a really nice nurse that held my hand, the OB came in to do the procedure, and another Dr. came in to watch the show on the screens. In the height of all the pressure from the dye he looked at me and asked if I knew what I was looking at. Yes, I said, that's leakage, my tubes are clear! He nodded, "yes, you did good".
After all that we were finally referred to a Reproductive Endocrinologist. That appointment was probably a month or so wait, not too bad. It was answering many personal medical and family history questions, verifying we had the HSG, reviewing the results of the bloodwork and hearing that we were good candidates for treatment. Great, when do we start IVF? Also, not how this works. This is the part where insurance companies make decisions for you based on what is most profitable for them, versus what path is most comfortable for you. With our plan, we found out we had to do 3 intrauterine insemination (IUI) procedures before we could get approval for IVF. The insurance company wants you to go through the cheaper, less effective method three times before you can graduate to the more expensive twice as effective method.
We were not happy about being forced into IUI, the success rate is ~15% while IVF is ~30% for our specific situation. We did not want to go through medications with significant side effects that impact quality of life, even more waiting, and get our hopes up on procedures that would likely not work, it felt like a waste. We had no other choice aside from paying out of pocket, so we reluctantly went down the IUI path. We left that first appointment with another lab order for tests like cystic-fibrosis and AIDS amongst a bunch of other ones, I remember seeing at least 7 vials of blood come out of my arm.
The first IUI procedure was a fail, the second one resulted in a pregnancy. I ate my words, I couldn't believe this procedure actually worked for us. The bloodwork I was doing multiple times a week looked great, so did my levels of pregnancy hormones produced by my body were trending up normally. I had all the normal early pregnancy symptoms like exhaustion, that were increasing each and everyday. When you get pregnant with a reproductive endo, they typically see you through week 8, then transfer your care to your OBGYN. Based on my insurance, the reproductive Dr. was able to do one last ultrasound before we switched over.
We were so excited for the ultrasound, each day I was reading about how the baby was developing, I knew the heartbeat would have come at 5 weeks, and what the baby looked like as we were about 7 weeks pregnant. I also had the craziest feeling that we were having twins, we joked about seeing two in this ultrasound. When we got to the office, it was such an joyous feeling to be with the Dr. and nurses we had been working so closely with over the past months. The ultrasound began and I saw the fetal pole, which looked as I expected it to. I was so distracted searching the screen for a second baby I felt I knew was in there, that it took me a moment to notice the nurse didn't look so happy anymore, the mood of the room shifted. The Dr kept passing back and forth over that little baby in there. Why was she doing that, it looks fine? Looking back I don't know why it took me so long to realize there was no heartbeat. A missed miscarriage they call it. I wasn't expecting that, I thought we would be bringing those ultrasound printouts home to be placed on the fridge, instead they were quickly folded up and placed into our file. We were eventually lead out the side door of the practice, heartbroken, deflated, shocked. We learned that a Missed Miscarriage is when the baby has passed, but your body continues on as if you are still pregnant. Your symptoms continue to increase as do the hormones your body is producing. There is absolutely no indication the baby passed until you get to an ultrasound.
In our case, we knew the exact date/age of the baby, there was no margin of error. That baby undoubtedly should have had a heartbeat. We were presented with a number of options;
1) Wait for my body to realize the loss and do what it will naturally do, this process could take weeks before it begins, and it emotionally traumatic as you have no idea when the bleeding will start, and it often goes on for weeks.
2) There was a pill I could take that will help the process along, although the passing of the baby can be weeks of bleeding.
3). Schedule a D&C procedure when my Dr. had time in the operating room at the hospital. This involves anesthesia, and having the tissue removed from the uterus.
4) Ipas procedure, which is the same as a D&C but done right in the office. The catch is, you have to do it without pain medication.
For us, we chose to do the Ipas to get the quickest resolution as possible so we could move on with building our family. I went through the procedure a couple of days later, my husband was able to be in the room with me. He as a first responder is used to bood, when he almost passed out, I knew it was bad. He said he was surprised at how much blood there was. It was painful both physically and emotionally. The Dr. did see a shadow and noted this could have be another baby, I never mentioned the twin thing to her. After the procedure I had significant bloating, cramping, and bleeding with clots for weeks. They were also able to do pathology to find out that it was a rare chromosomal abnormality, not compatible with life, and that it was a baby girl.
I took the day of the procedure off work, then worked from home for a couple days, but I was eager to get back to the distractions of a busy, upbeat office. On my first day back in the office, we had some colleagues visiting from another location, one of them come right up to me beaming with excitement and motioning at my bloated midsection, he said "Cheri, do you have something to tell me". I was speechless, nobody at work knew. It took me a minute to piece it together, I was VERY bloated, he thought I was far along into a pregnancy and assumed everyone already knew. Not that it is ever ok to say things like that, but I did believe it came from a place of genuine excitement for me and my family. I kindly told him I was not pregnant, and put him on the spot as I asked him why he thought that - he stuttered for a moment and said it was because my face was glowing. I assure you, my face was not glowing that day.
It's hard to talk about it when you're going through it, partly because there is a lot to unpack, and so many people don't understand how deeply emotional this process is. I confided in a friend when I was recovering from the Ipas, who when I explained everything that happened, her response was "well, at least you didn't have the nursery set up". It was hurtful to hear such a dismissive and unempathetic response, it's also reflective of how dismissive our society can be on this topic, another reason I decided to write this.
We then waited a couple more cycles so my body could heal from the trauma before moving on to the 3rd IUI which ended up being unsuccessful. Next, came IVF which started with an egg retrieval. A huge box of medications and syringes was delivered to my house, we had a binder with my protocol to follow. Pills, patches, suppositories, I even had to measure and mix 3 medications into one syringe. I self injected myself multiple times a day. There were many ultrasounds as they fine tuned the right levels of meds to get you to produce eggs for the retrieval, but not too many to impact quality. The trigger shot was the most stressful part as you need to take it at an exact minute preceding the retrieval procedure in the operating room.
The procedure itself was fine, I was put under anesthesia and only remember wheeling into the OR then waking up after as if no time had passed, we found out that they were able to get 5 eggs. Then you wait for a call the next morning to see how many of them fertilized overnight. We had 4 of the 5 fertilize overnight, and scheduled a fresh 5 day transfer which means the embryo will be placed inside me on the 5th day. We waited on pins and needles wondering if the 4 embryos would continue to develop, while I switched over to the meds to help with the transfer. The four continued to develop, the lab picked the one the felt looked the strongest, and froze the other three, we proceeded with the transfer.
It was a week or so before it was time for bloodwork to see if I was pregnant, a week feels like an eternity in this process. We got the call to say that I was pregnant!! The blood draws were multiple times a week, and unfortunately my counts were not trending as they should have been. Another loss.
Since this loss was so early, there was no physical healing needed. We were able to move onto a frozen transfer on the next cycle. We decided to use 2 embryos this time and leave the last one frozen. Same routine, meds and ultrasounds up to the transfer date. Not all embryos thaw out successfully, you have to take all the meds in the weeks leading up to the procedure, the morning of the procedure you get before you head to the hospital to tell you if they survived the thaw process, and if the procedure will happen or not. We were lucky enough to have both of the embryos ready for the procedure. It was very quick, I was able to get meds to relax, it's a catheter, and a long tube, they use ultrasound to determine where to best place the embryos for implantation. Then you hang tight while they check in the lab that the embryos are no longer in the tube.
Same process as the other transfer, wait a few days and do bloodwork. We got the call, pregnant again. We held our breath as the bloodwork days came and went, we wanted to see an upward trend and, our numbers were HIGH this time, and increasing like crazy. We my hormone levels were inline with triplets or quads than they were with a single. When it came time for the first ultrasound, we found there was 1 perfect looking baby. We learned that after miscarriages, your body can overproduce hormones to protect the next pregnancy, which explained why our numbers were off the charts.
We were not out of the woods yet, I stayed on meds to help mitigate another miscarriage. I was also having post traumatic stress and anxiety as I've only know pregnancy to end in loss up until this point. I was about 8 weeks along and starting to feel more confident, when I noticed at work that I was bleeding. Like heavy, not normal, huge clot passing bleeding. I was bleeding as bad as I was after our first miscarriage procedure. I locked myself in a bathroom stall at work, I called the office, my words could hardly come out as I explained to the nurse what was happening. I was instructed to go to the hospitals OB office for bloodwork as their lab would give the quickest results. I remember being in the waiting room, watching happy pregnant couples come and go from their ultrasound appointments. This was the only time in the whole process I felt bad for myself and felt the weight of the cruelness of it all. I had no doubt a baby could not survive the amount of blood I was losing.
A few hours later I got a call, my levels had increased from the last draw, the trending indicated I was was not having a miscarriage. An ultrasound confirmed this, the baby was perfectly healthy. The Dr. suspected the progesterone suppository I was taking multiple times a day for most of the last year was causing the bleeding. We had to switch to intramuscular progesterone oil injections instead, which we were happy to do, even if hubs hit a nerve half the time, and it felt like I had marbles in my butt (if you know, you know). The rest of that pregnancy ended up being very normal after the 1st trimester, and today that little frozen warrior is my Finn.
People have always said that the first is the hardest, and the next is easier. I appreciated that people were trying to make me feel hopeful, but I cringed inside every time I heard that because there was no data that to support that that's the case for people with PCOS. When Finn turned a year we decided it was time to try to transfer that last embro. I started with the bloodwork and was waiting for my period to schedule the HSG procedure. I waited and waited, which seemed normal because I'm irregular. I noticed I was very tired. For weeks, waiting and tired. Then it hit me like a ton of bricks one Sunday night, I hadn't been this tired since I was pregnant. I took a pregnancy test the next day, ya know, just to rule out that ridiculous idea that I could be pregnant. We have a medical office at work, and I was able to do the test there, I explained how it's impossible but I want to check so I can get on with the IVF process. We got the shock of our lives. I never thought we would every experience the joy of a surprise pregnancy.
That ended up being Archie, he just showed up one day and stayed. That pregnancy started normal, and was able to get though most of it without meds. I did get gestational diabetes, which 80% of people with PCOS get, mine wasn't able to be diet controlled so I ended up on meds again. This required me to have weekly ultrasounds & non stress tests throughout the 3rd trimester. One of my last non stress tests, I was in the middle of the 15 minute process of laying there and listening to the heartbeat as the sheet prints out, when one of the nurses came in, she didn't look well. She turned down the volume on my machine and said she didn't want the room next door to hear. I could then hear her next door, she was crying an awful cry, she just found out she lost her baby. I don't know who she was, or her story, but I cried for her, and still wonder about her.
I hope that sharing my story can explain what this experience is like, or help someone feel a little less alone if they are going though this.