The morning of Friday, June 16, 2017, was my next appointment. I couldn’t walk quickly. I couldn’t eat. I was short of breath and could barely sit comfortably. I couldn’t feel my baby moving anymore; only contraction after contraction. I knew that the fluid had to be at an even higher number now. The fluid build-up broke my heart. Not for me, but for my Tessa. It had been questioned for most of the pregnancy of whether or not she didn’t know how to swallow, or if she really had major esophagus problems, or a combination of both. We never saw the stomach bubble. She just simply could not swallow.
A few days before, a nurse called me to prepare me for the idea of an amnioreduction, and possible induction if the fluid was worse. The doctors at this point were extremely concerned that my health was at stake. If something went wrong and I was home alone, I could bleed out. In a controlled environment, like the hospital, they could at least remove some of the fluid and have the medical team prepared for the worse situation.
I was almost 35 weeks at this point. To me, if we got to the specialist that morning, and the AFI was high, I knew they would need to reduce some of the fluid. I also knew that doing so could cause labor to start and that would surely mean the end of my pregnancy. But at this point, the doctors were certain there was nothing that could be done for Tessa to change the severity of her situation, and my health and safety had become the main priority. They knew and had respected my desire to try to go full term, but they had also warned me at the very first visit that if my health ever became an issue, they would need to intervene. Still, I was on the fence that morning about the possibility of an amnioreduction. Should I agree to let them do it, I asked my husband. He looked at me like I was crazy. “You have done so good, babe, but you are in so much pain. I don’t know how much bigger you can get without the fluid hurting you,” he said. I told him I wanted to speak with the doctors before agreeing to the fluid reduction, or to being induced, but in my heart, I knew this might be it.
I had my hospital bag in my car for over a month now, constantly double checking Tessa’s little outfits and the pink plush blanket my mom had gotten for her. I checked the back again and stroked the blanket. I hoped it would feel soft and warm enough for her. I held the little cotton gown with the pink roses on it and wondered if it would fit her. She was measuring about 3 pounds at the last visit. I prayed so hard that Friday morning. Trust in God. Walk by Faith. I found it ironic that I had just prayed for guidance for my team to help me through this. I probably would have kept going and going if could. But my body was so stretched out that the bottom of my stomach was welting. Not in a stretchmark kind of way, but almost in an injured way. It was bizarre. The top of my uterus was all the way up between my breasts now. In the last two weeks, I’d had to wear shirts 4 times my original size just to fit over my belly. The pain was so intense, and I still struggle to define exactly what that pain feels like. I just begged Tessa to come up to the surface of my belly so I could feel her kicking me again.
I hadn’t been in a car in over a week. My husband opened the door and helped me in. I couldn’t sit back all the way in the passenger seat, my belly actually went above the window. I asked him to hurry because I couldn’t sit very long. When we got to the hospital, I felt like I was going to faint. I was scared to know the AFI number. I could tell in the team’s eyes the concern and the sadness.
I laid down on the patient bed in Room 1. I looked at the screen. This. This might be the last time I see her. When my specialist entered, they began to look at the count. Now remember: AFI is taking four quadrants of empty space around the baby and adding it together. 35 AFI is the beginning of severe. 24 AFI is the official count for the positive diagnosis of polyhydramnios. The tech measured the first quadrant: 25 AFI. I closed my eyes in disappointment. My first quadrant alone was polyhydramnios all by itself. I couldn’t see Tessa very well, the screen was still black. At the end of the count, the total came to 65 AFI. It had jumped by 15 in just over a week.
“65!?” Was all I could say at first. Outwardly, my uterus measured 52 weeks pregnant at almost 35 weeks. The medical team said I was the size of full term triplets.
We discussed my concerns. We discussed how I was feeling. And the doctors reiterated that nothing else I could do would make my baby a healthy “normal” baby, and take away the Trisomy 18. That was the hardest part. There is no cure. No fixing every cell in her body. Her heart, her stomach, her kidneys, her brain. I still had to think about it. I wasn’t ready, but I knew that this was the best decision for my own health, and for my family. The fluid could come back in less than 48 hours time, and induction was also on the table.
I agreed to let them drain some of the fluid. Looking back, I think a lot of people would have probably asked to tap the keg on a belly like mine a long time ago. I was just so determined to make it as far as I could without intervention. I thought back to the day that my specialist had said “You’re okay, you’re not to 60.” Now I was at 65 and it was definitely not a joke anymore. I could see in her eyes that she was concerned for me. I could see in the nurse’s eyes that this was serious.
I wasn’t scared this time for the needle like I was for the amniocentesis 14 weeks before, but my anxiety was through the roof. I started to count in my head and do a little trick with my senses that I had taught myself: name something you see, hear, smell, touch, and taste. Try it sometime-it eases a racing mind. I was in an all too familiar daze. Much like the amniocentesis, my bed was lifted, and my belly was sterilized. This time, the team set up with larger needles, connected to vacuum like tubing to pull the fluid out into large glass cylinders, each held 1 liter of fluid. When looking for a spot for the needle, since Tessa was still head down and low in my cervix, they thought the best place would be to put the needle in high. It went in between my breast. I braced myself for the same pain as before, but my skin was so thin that I could not feel it go in.
As the fluid drained out, I could see Tessa better and better. I calmly watched Tessa on the screen. She, too, was calm. She wasn’t moving as much as she had in past visits. She seemed to be sleeping soundly wrapped in my womb. I’m so sorry, honey, was all I could think. I’m trying, baby, just hold on for mama, please. Then came the first contraction. The specialist held the needle still. “Are you ok?” Yes.
Another contraction. Then another, and another. The fluid was drained for an hour- and-a-half. In that time another specialist came in to check on me and talk to me while my specialist and the nurses kept the fluid going steady. The spot where they entered between my breasts with the needle was now down to just a few inches above my belly button. My skin was already feeling relieved, and I could breathe easier. I took my first full deep breath in weeks. I looked over at the yellow fluid in the cylinders. I was impressed that my body could carry that much. My husband was stroking my head, sitting behind me. The goal was to get my fluid level down to about an 18 AFI. Another contraction. This one was so hard that it pushed the needle out of me and I held my breath and moaned in pain. They only were able to get me down to 24 AFI before my body pushed the needle out. I looked over at the cylinders. 4 liters. The specialist said she didn’t want to go back in for more, because I was contracting too much. I could feel Tessa moving around inside me again. It was comforting. There you are, baby girl.
Another contraction. The medical team didn’t have to tell me; I already knew. I was going into labor. I was cleaned up and my vitals were taken. I could walk, so I was sent down to labor and delivery. I was put in a private room at the end of the hall, away from other mothers who would be delivering healthy babies. At this hospital, when a baby is born, chimes and bells play a song over the loudspeakers in celebration of new life. I could hear the music and it made my hair stand up. I tried to ignore it, I had to. I was put into Room 8, and hooked up to a machine to watch my contractions. A doctor came in and said I was definitely in labor, as he checked my cervix. I was dilating. Tessa was coming. The doctors wanted to see if I progressed into full labor on my own without any intervention. If the contractions fizzled out then at some point some medicine would be given to me to help dilate. I knew that all of the contractions could be putting stress on Tessa’s heart, and that if I got her out soon there would be some chance of survival.
A nurse came in who looked like my grandmother-in-law. I felt calm and peaceful around her. I was put on a clear liquid diet, and given ice chips and broth. I had an IV started, and they put an 18 gauge needle in my arm in case I needed a blood transfusion if I started to hemorrhage. My uterus needed to rest. I needed to rest. I laid down in the hospital bed. My husband called our family. My in-laws were out of town, but decided to cut their trip short to come back the next day. My dad left work. My mom had Tatum and said she and my dad would watch her until further notice. My grandmother-in-law came to the hospital and waited in the waiting room off and on. I was surprisingly calm, knowing that my family was near, yet I still felt anxious. We had no idea what was going to happen with Tessa as labor progressed. I kept praying that my baby wouldn’t suffer in any way.
Most babies with Trisomy 18, will live a few minutes to a few days. The majority of babies with this diagnosis will be stillborn, and of those that make it, only 10% will make it to their first birthday. I was just hoping I at least would be gifted a few minutes with her from the start of all of this. I knew the odds of survival. But I also knew that I gave her all the love I could.
After a few hours, the contractions kept coming and I kept dilating. My specialist came in to visit me at the end of her shift, and offered words of kindness. I wondered again, much like I had in the beginning, what it must feel like to look into the eyes of someone who may lose their baby. I thanked her for all she had done and I am still thankful for the 3D pictures from every visit, since those will be my only memories of Tessa besides her birth. Those 3D pictures, much like all photos, are a moment in time. And even under the circumstances, those were happy moments. It was a blessing to see my daughter alive and happy, swimming in her pool of a womb. Hold on just a little longer baby. Hold on.