Finley June, this is our family's story. During my pregnancy, it was hard for me to find stories out there “like mine”. I know a fair amount of myasthenia gravis patient to who have gone on to have children. It was much harder for me to find juvenile onset patients who were having their first baby while doing bi-weekly IVIG. I treasured hearing the few stories of women who were in similar situations. Their wisdom and experiences helped me in some tough decision making, and I hope that by sharing about my own birth experience I can provide insight for others who are wondering what it's like to deliver as a first time mom on IVIG with MG.
I promised this would not turn into a mom blog, and for the most part it won’t. But I also know how valuable personal narratives are as a source of healing. And I know it was like a beacon of hope when I did find a small handful of women who were like me and willing to share their stories and experiences.
So, here’s Finley’s birth story.
We have to start before she was born. On Thanksgiving while making pumpkin pie, I started bleeding. I was 32 weeks and scared out of my mind. We ended up spending most of Thanksgiving admitted to emergency triage for L&D at our hospital to rule out preterm labor and placenta abruption. That’s when I found out that the “tight stomach” I was experiencing wasn’t just from my abs being stretched or Braxton Hicks, but actually contractions. We also found our she was also positioned extremely low and I was already 50% effaced. I left with instructions to take it easy and knowledge that I had uterine irritability and might continue contracting regularly until delivery.
We already had planned on doing weekly non-stress tests at this point for extra monitoring, which I was so grateful for. At that point even though we had a c-section scheduled for 38+5, I fully believed she would try to come early. A note on the scheduled c-section; I should be used to answering the question of why by now because of how many times it was asked in the hospital, by nurses and staff, etc. With MG and my treatment schedule, we wanted to give both mom and baby the best chance possible at a safe delivery. Babies are unpredictable as we all know, and with the frequency of IVIG and the type of side effects I have from it, we knew there was a very narrow window of her arriving on her own during a time where I was not infusing, recovering from infusing, or feeling the wearing off effects of an infusion. We talked extensively with maternal fetal medicine and anesthesia before deciding to schedule.
So after Thanksgiving, fast forward 6 weeks, many appointments, and endless contractions later... we made it to our scheduled c-section, which also happened to be Trav’s 30th birthday!
I was scheduled to be the first c-section of the day to minimize time fasting since it can make me feel very weak. That meant we needed to be to the hospital in Tacoma by 5 am so we set our alarms for 3, showered and got ready, and made our way over.
Around 5:45 after we checked in, I was placed in the same triage bed around from Thanksgiving because L&D rooms were totally full. It felt like coming full circle, but also was unsettling being in the same bed from that day that felt a little ominous. At this point there was a lot of hurry up and wait. I did a full body sterilization, got peripheral vein access, did blood work, met with anesthesia again, and then got bumped back twice for emergencies. We were running 4 hours behind and had been at the hospital for 7 hours, and I started feeling very weak from not eating or drinking since 9pm the night before. I seriously started to wonder if I would be able to physically handle a major surgery with how weak I was starting to feel. I talked to my nurse about it and had a conversation with anesthesia and my OB about what to do if I got bumped for a third time. I felt selfish for bringing it up knowing that those babies and mamas needed to be in there while also feeling like my situation, while planned, could become an emergency the longer we waited. We talked through several options including possibly rescheduling but settled on trying to get my blood sugar back up a bit. The anesthesiologist allowed me to have some apple juice to bring my blood sugar back up in hopes it would make me feel a bit stronger, and my nurse pushed to get me into a room on the postpartum floor so we could have some more comfort and privacy to rest.
As soon as I finished sipping the apple juice (it was glorious), the anesthesiologist came in and said it was go time. So holding my bag of fluids, we hustled upstairs to the OB OR to make sure we got in without being bumped again. It was pretty surreal. Having been through major surgery before and a few minor ones, being in the OR was not really a new experience, but this was the first time I would walk into an OR alone and come out with another human with me. They administered a spinal block, inserted the catheter, gave me some meds for nausea, and let Travis come in.
It went by fast. I knew it would! I opted for a traditional drape though they offered me a clear one in case I wanted to watch. Travis watched (he said it was amazing) and I mostly kept my eyes closed and talked to the anesthesiologist to keep my mind from wandering into anxious thoughts and to keep nausea controlled. Finley was out in literally a matter of minutes and hearing her cry was such a relief. We knew there was a chance she could be born with neonatal MG (temporary), so hearing that strong cry was a hopeful sign for us that she would have good muscle tone and no signs of neonatal MG.
They evaluated her right away and let her lay on my chest for a bit after they deemed she was stable. I was feeling nauseated and shaky so Travis helped me hold her in place and they then passed Finley off to him for skin to skin while they sewed me up. In hindsight, I wish I had been able to hold her a little bit longer in those first moments, but I also was scared I was feeling too weak to safely hold onto her (especially while feeling quite woozy).
I did get her hold her on my chest skin to skin while we made our way downstairs to the postpartum room we were in before, and the nurse helped lay me on my side for side lying nursing. I still was in awe that after all the stress leading up to her delivery, I had done it and she was here and was healthy.
We were worried that Finley might have muscle weakness from neonatal MG, and it was the decision of the head of the NICU to monitor her for 72 hours after birth. Because she checked in well at delivery, we were able to keep her in the room with us which was a huge answer to prayer. She passed every test with flying colors and we were relieved that she demonstrated a strong sucking reflex as well as that nice strong cry.
Anyone who is a mom knows what I’m talking about next — the dreaded pushing down on the tummy to check on your uterus after delivery. If you are squeamish at all, you can totally skip this part.
I felt like they were checking me more often than I anticipated they would in the first hour of being in the room, and my nurse seemed calm and fairly quiet about how I was doing. As we started the third check in a short amount of time she mentioned I was bleeding a bit heavier than expected so she wanted to make sure everything was okay. She pushed down, and that’s when I felt a large gush of blood against my thighs that didn’t seem to stop and I said something along the lines of, “oh shit that’s not good”.
My nurse stayed calm, but firmly told Travis he needed to pull the call button plug out from the wall to sound an alarm. Our room immediately swarmed with nurses. The doctor who assisted my OB with surgery ran in. I could hear someone talking about the hemorrhage cart. I told my nurse I didn’t feel good and they gave me an oxygen mask. Everything was a blur at this point. My OB showed up a few moments later and leaned over right at my head to take my hand. The attending OB on call kept asking for fentanyl to get hung so she could start to work removing clots.
During this point someone got a second IV going and drew labs. I think there were about 10 people in the room at this point. It really was all hands on deck. There was a lot of commotion and at one point someone led Travis out of the room to lie down because they were worried he would pass out. I turned my head at one point and saw him at the doorway. I turned my head the other way and saw Finley fast asleep in my bassinet.
My OB told me my uterus wasn’t contracting and that the bottom half was full of clots that needed to be removed (hence the fentanyl) and that they needed to push down very hard on my stomach to make that happen. They pushed hard and pulled out many clots, some bigger than tennis balls while also giving more pitocin, TXA, and other a few other medications to contract my uterus down and help stop the hemorrhaging.
In all, this couldn’t have been more than 15 minutes. Somehow my vitals stayed stable the entire time, and I’m pretty sure I didn’t cry. My OB and the attending and nurses kept telling me I was doing great and we so strong. In the moment, we didn’t realize how serious the situation was and how fortunate we were to get it under control quickly. I was swollen and exhausted and in tremendous pain, but all I could really focus on was the three of us together and immense gratitude for being able to hold Finley.
We found out later during a nursing shift change that separate from surgical blood loss, I had lost about 2 more liters of blood from the hemorrhaging and clots. I also found out later during our most recent postpartum care appointment that the pressure used to remove the clots was so strong it caused bleeding in my abdominal muscles. My OB believed the uterine irritability contributed to the hemorrhaging and that after weeks of contracting much, the muscle was too tired to contract after delivery like it was supposed to.
Because of this, it was a slower recovery than anticipated in the hospital, and it’s been slow going at home now too. I was exhausted from the surgery, from blood loss, from the emotional roller coaster of birth. My catheter stayed in a bit longer, and I finally was able to get up out of bed and shuffle a few steps to the bathroom on my own by the middle of the night the next night. Sunday and Monday we also did iron infusions to try to lay a good foundation for my body to rebuild blood after that significant loss. We went home prepped for a longer recovery time than we anticipated and knew how important it would be to take it a day at a time.
During those first few days, Finley was a star baby and Travis was a model caretaker. He changed every diaper when I wasn’t able to get out of bed yet, cheered me on when I walked around the nurse’s station for practice, and kept up with what Finley and I needed the entire time we were in the hospital (Friday early morning through Monday afternoon). Poor guy didn’t take a shower the entire time and slept on a cot next to the bassinet the whole time.
At home, I am still taking it a day at a time. I’ll write more about postpartum recovery another time with recommendations for what I’ve found most helpful during this season and when I’m not still in the thick of it all. I’ve run into some prolonged issues from my birth experience that prevented me from receiving my regular treatment, which was something I hadn’t anticipated.
And in all honesty I’m still processing it all. As a planner, I do my best to know and understand all possible outcomes and be prepared for them. My chances of hemorrhaging were less than 1%, and it was a complication we barely talked about because we were so focused on the uterine irritability and possible neonatal MG for Finley. It’s hard to balance taking care of myself and wanting to naturally put Finley first in all circumstances. My OB has to remind me that I need to be well to take care of her when we were discussing possible options to manage some of the prolonged side effects I was experiencing.
To say I’ve learned a lot over the last 2.5 weeks is and understatement and I’m sure I will continue working through and unpack what motherhood looks like for me in the coming weeks and months. I’m sure I’ll have more to share. For now, this is the story of how my rare and broken body managed to grow a tiny human who has us smitten even with the fatigue and complications that came with bringing her into the world.