Our first daughter was born in October of 2016. I naively thought that it took “forever” to get pregnant with her, it took 3 months (insert eye roll here). It was a very uneventful pregnancy that ended with a somewhat eventful delivery. My water broke at 36 weeks and 6 days and our beautiful daughter made her Halloween debut. Fast forward through postpartum depression, moving 12 hours away from our support system, the death of close family members, and 2 years later, we decide we are ready to try for a second child. This is where our long journey to Nora begins.
In early 2019, I got pregnant and then went through a missed miscarriage. I got positive tests, faint ones, but still positive. My period was over a week late so I made an appointment with my doctor for the first ultrasound. About a week or so after that I started having bad back cramps that my doctors office dismissed as just normal pregnancy pains. The next day, I started bleeding heavily and ended up in the emergency room where I was told my HCG levels were very low and they could not find anything on the ultrasound. This was my first experience with the world of miscarriages and it was devastating. To make matters worse, when I followed up with the OB/GYN I was seeing at the time, she told me that no one really looks into the cause of miscarriages until you have had three.
In 2020, I had my second and third miscarriages – these were also early. I made an appointment with my OB/GYN to discuss the fact that it had taken quite a while to get pregnant again and I had just had 2 more miscarriages. I was 33 at that point and worried that my age may be playing a part in everything. At that appointment, I expressed my concerns and was thankfully taken seriously by my doctor. She ran as many tests as she was able to and then referred me to a fertility specialist when all of her tests came back with no answers.
Through fertility testing, we were diagnosed with secondary infertility. What a frustrating world to be in. You’re told that you should feel lucky that you have one child at least, and everything happens for a reason. I hate that phrase. Yes, I am so lucky to have my daughter, but I also feel like my family isn’t complete yet, and would love to give her a sibling.
Our fertility doctor suggested we try IUI and was pretty confident that we would get pregnant that way. We did three medicated rounds and finally got pregnant. I went in and got it confirmed via a blood test on a Thursday and was told to come back Monday to make sure my HCG levels were rising. By Saturday, I was not getting positive digital tests (yes, I continued testing at home, because I was paranoid it wasn’t going to stick) and by Sunday, I was bleeding. Monday’s blood test confirmed my fourth miscarriage. It had been 2-2 ½ years of trying and the miscarriages were just taking a toll on me mentally. I told my husband that if our next round did not work, I didn’t know if I could keep going.
Round 4 of IUI was next and what do you know, it worked. I got a positive test about 4 days early and the lines just kept getting darker, I couldn’t believe it. We went in at 6 weeks to get our first ultrasound and saw baby’s heartbeat. I still couldn’t believe it. We also found out I had a small hematoma and I was put on pelvic rest until the next week when they would scan again. At week 7 the hematoma was gone and you could see the little heartbeat fluttering strong. I was released to my regular OB/GYN and scheduled my first appointment with them. We were so excited and started telling our family and close friends when we were about 8 or 9 weeks along.
I cautiously started to plan for baby’s arrival, we had a due date of February 11th 2022. I still couldn’t believe I was pregnant! I wouldn’t let myself get too excited though, because I was scared it was all going to end. We found out baby was a little girl and started thinking of names. My husband and daughter were so very excited. Then, I started spotting around 11 or 12 weeks. I thought for sure it was the end. I went into the office for another scan to see what was going on. Come to find out, I had another hematoma and was put on pelvic rest again. When I went back for a follow up ultrasound at 15 weeks, we were told it was gone. I was relieved and let myself finally get excited about baby girl. We started getting out all of our baby stuff and set up the room for her, I got the registry going, and we started narrowing down names and finally landed on Nora Blake. Everything felt right.
My next appointment was for our anatomy scan at 19.5 weeks. Covid was ramping up again and my doctors office changed their policy about who was able to come into the office. Children were no longer allowed, and on that particular day we unfortunately didn’t have anyone to watch our daughter, so my husband wasn’t able to go. I was nervous for some reason, but everyone assured me that everything was fine and it was just my anxiety. But deep down I just couldn’t shake the feeling that something was wrong.
During my scan I noticed that Nora wasn’t moving around all that much, but she had a strong heartbeat so all was fine. I told myself there was no reason to be anxious. Then the ultrasound tech started scanning her heart and kept scanning her heart. I tried to not pay attention to it too much and asked her if I had an anterior placenta because I wasn’t able to feel her move much. She responded that she would answer that in just a minute because she needed to keep checking for something really quick. She then told me that there didn’t seem to be a lot of amniotic fluid and she was having trouble taking some measurements, she needed to go get the doctor to double check.
Cue instant fear and tears. I was so scared in that moment, and alone. The few minutes that she was gone felt so long. Finally, my nurse practitioner came in and looked at everything. When we went back to the room I called my husband in tears and told him that something was wrong, I didn’t know what yet, but something. When she came back in the room she explained to us that there was not much amniotic fluid, there may be a hole in her heart, they can’t find her bladder and she’s also measuring two weeks behind. She was going to refer us to the high risk OB group and her nurse would try to get us in as soon as possible.
We were able to get in two days later and were met with the absolute worst news. Anatomically, Nora appeared to be fine, but there was no measurable amniotic fluid and she was incredibly small. We were told that she most likely would not survive because at that point I was only 19 weeks and a few days. We could terminate the pregnancy or continue to be monitored weekly to see if there was any improvement. We chose the latter. At that point our doctor’s best guess was placental insufficiency, she just wasn’t getting what she needed to grow, and unfortunately, there was nothing anyone could do.
Every week, we made the 45 minute drive to see our doctor and get another set of scans. Every week Nora was alive, but with little to no improvement. Every week we didn’t know if we should be hopeful or not. Every week we left our appointment with so many more questions. But every week was one more week with her, so we tried to enjoy it as much as we could.
At one point, around 22ish weeks, we started talking about the possibility of her maybe being able to survive and receive medical intervention if I went into labor, but only if she had finally grown. Unfortunately, the scans showed that wasn’t the case. And then doppler scans of her umbilical cord and liver started showing signs of reversal. We were told we probably had a couple of days left. Nora had other plans though because she held on another week.
At 23 weeks we went in and were surprised to see her still alive. That probably sounds awful to say, but we were truly shocked when we would go in each week and she would have a heartbeat. At that appointment, her dopplers showed a complete reversal of blood flow. She was not getting anything at that point and her heartbeat was starting to slow. We made an appointment to come in the next Monday rather than Wednesday to check and see what was going on. Our daughter’s fifth birthday was quickly approaching, so we wanted to know what was going on before that.
On Monday, we went to our appointment and during my triage with the nurse, we discovered my blood pressure was high. I thought it was probably because we were anticipating Nora not having a heartbeat and all the stress of the last few weeks catching up to me. She had me sit for a few minutes and checked again; it still had not gone down. Our doctor was worried that I may be starting to have preeclampsia and told us that it was time to be induced. I was 24 weeks now. We checked into the hospital at 10:00 that night and I was started on Cytotec around midnight.
At 9:52 am on October 26th, Nora was born. She unfortunately did not survive labor though. She was so small, but she was a little person. She had a head full of hair already and looked just like her older sister. Immediately after delivery, I was started on medication for preeclampsia. Then we got to hold Nora for as long as we wanted. The hospital staff were so kind. They brought us a memory box that had a small blanket, some hats, an angel gown, a tiny cloth diaper and a few other things. They also took pictures of her, got her handprints and footprints, and allowed us as much time with her as we needed.
On the 27th, I was discharged. I thought everything up until that point was difficult, but boy was I wrong. I had to finally face the reality that I was leaving the hospital without my daughter. I had to be wheeled past all of the postpartum rooms, and then on the way out of the hospital going to the parking deck I passed a new mom and dad getting a picture taken with the newborn. It was a punch to the gut. I had a 45 minute drive to get it all out of my system and pull myself together enough to go home and then tell my almost 5 year old that her baby sister was no longer alive.
The next few weeks were incredibly difficult as I navigated still being a mom to a living child, having preeclampsia and constantly monitoring my blood pressure, and dealing with typical postpartum issues. We still had no answers after those first few weeks. The physical exam of the placenta only revealed that it was small and it showed some calcification, but nothing major, and Nora’s autopsy revealed that while she was very small, she was perfect in every other way. I started going back to see a therapist and trying to work through the fact that I may not have an answer to why everything happened and how to move forward.
A few days before Christmas, we finally got an answer. The pathology report on my placenta finally came back and it revealed that I have something called Massive Perivillous Fibrin Deposition. The very basic explanation is that there was a bunch of “gunk” around the villi on my placenta and it prevents blood flow. It is an extremely rare condition and there is very little known about it. It appears that it may have a pretty high recurrence rate and there is no known cure to prevent it from happening. I am glad to have an answer, and to know that I truly did nothing to cause this. It is a scary answer though, and we do not know what things will look like moving forward, but for now it can help us get a little bit of closure. What I do know right now is that we are a family of four, and even though Nora is not physically with us, she will always be known and have a presence in our lives. We hope to be able to share her story with other families so they know they aren’t alone, because a journey like this definitely feels isolating and lonely.
Professional photos courtesy of 84W Photography.