Sometimes You Know Too Much
Let me give you a little background to our story. My boyfriend and I are both nurses. He is an adult emergency department (ED) nurse and I am a pediatric ICU (PICU) nurse. Both of us have seen things, and done things for our patients, that we would never wish for any of our family members. There are only so many medications and medical interventions one can receive in order to have a decent quality of life. My boyfriend and I had both promised each other that we would never push for heroic measures if there wasn’t a meaningful recovery following an accident or surgery.
I had stopped taking my birth control pills in August because after 20+ years of taking the same exact pill, they started to make me nauseous. Maybe that was the universe’s way of telling us our clocks were ticking. We had discussed having children, but we didn’t expect to begin our journey to parenthood three months after stopping the pill.
The first week of November, I felt like I couldn’t get enough to eat, and I was more tired than usual. A co-worker joked that I was pregnant. She encouraged me to get some pregnancy tests, and so, with a click of a button, I ordered them on Amazon. They were at my house by 10am. I got home and peed on one. “Pregnant.” I refused to believe it, so I peed on three more. They confirmed the results. I texted my boyfriend at work and told him that I was three days late. I took two more tests when he got home and had him sit in the bathroom for the two-minute wait. Two minutes came and passed. “It’s getting awfully quiet in there,” I said. He walked out of the bathroom with a huge smile on his face, “Well, I guess we’re having a baby.”
We didn’t tell a soul-well, except for our immediate supervisors at work. I wanted to get through the first 12 weeks. I didn’t want to get my hopes up. But at 4 weeks and 5 days, we saw our little jellybean on the black and white monitor, with a strong heartbeat. And we both fell in love.
We told the rest of our families and friends at Christmas time we were having a baby. During this time, I had NIPT bloodwork done and the nuchal translucency scan. NT scan was normal. The bloodwork, however got lost in shipment. So, I had to go get it re-drawn. My doctor called about two weeks later and said those results were inconclusive. You would think at this point alarm bells might be ringing. Nope! I was completely and utterly unaware of how the next few weeks would change our lives for forever.
I went to my doctor and got the NIPT bloodwork drawn for a third time. On January 28th, my OB/Gyn emailed that, “the bloodwork came back with insufficient cellurarity.” She went on to explain how this can happen with babies who have too many chromosomes, like with trisomy 21 babies. She referred us to a perinatologist (maternal fetal medicine - MFM) for a detailed ultrasound.
I was laying on the table, watching our little peanut wiggle and swim around, not cooperating with the tech. She said she wasn’t getting some of the measurements she needed and so she was going to see if the MFM wanted a different angle. Again, I was blissfully unaware of what was to come. (You know, you read the stories of the tech leaving the room to go ask the doctor something and the mom on the table knows immediately at that point, that something is wrong… Not me!) Even with everything I had seen at work, I was still not processing what was happening when the doctor walked in, picked up the ultrasound wand and started doing an exam.
He got straight to the point. The baby’s brain didn’t look good. Something was wrong with the baby’s heart. The kidneys were small. I was 16 weeks pregnant at this point and the baby was only measuring 14 weeks. He said all of these signs pointed to Trisomy 13 and offered an amniocentesis to verify the diagnosis. He told us at this point, with a possible Trisomy 13 diagnosis on the table, the best thing for the baby would be for me to miscarry so we wouldn’t have to make any difficult decisions. But our baby held on.
I tried to stay positive and hopeful. But being a PICU nurse, sometimes you know too much.
Two weeks was the turnaround time for the amnio results and would bring us to my birthday week. The day after my birthday, our MFM called to tell us that our baby had full triploidy. Our baby had 69 chromosomes, as opposed to the expected 46. He then went on to say the three words, I had feared: Incompatible with life. I was shocked at first. And then I blamed myself. But my MFM assured me a million times this was nothing that I did. Or didn’t do.
My doctor called two days later and gave me three options: carry the pregnancy as long as possible, termination at a clinic, or termination by labor and delivery at our hospital.
We chose for me to be induced at our hospital because my doctor would be the one doing the entire procedure. I’ve seen this doctor since I was 15 and I trust her with my life. She called less than an hour later and told me I needed to check in at 8pm. So, on Valentine’s Day night, we drove to the hospital to be induced. The nurses were extremely compassionate and put me in a room at the end of a hall without neighbors so I wouldn’t have to hear the cry of other babies being born. This was also when we found out we were having a girl. I was elated. But then I remembered why we were in the hospital.
About 30 hours after admission, at 3:55am, our daughter was born. We named her Ann Marie. She weighed 4.4oz and was 7.9 inches long. She was perfect. We spent a few hours with her, within which we tried to get a lifetime of “I love you’s. I told her I would love her for the rest of my life, and I would anxiously await the day I would be able to see her again.
Our due date was a relief more than anything. We went to our favorite lake and spent the day there where we sprinkled some biodegradable glitter in her honor. (We have her ashes, but I can’t part with them). Before we left, a last little sunflower finally bloomed. I now look for sunflowers whenever we are on a long drive. I like to think when I see them in random places, it’s Ann Marie checking in.
~KEM