There is something wrong with the baby.
At eighteen weeks, I had a routine ultrasound with a Tufts doctor at Beverly Hospital. They brought in the All-Star team right away because I am 1) at thirty-nine years old, considered to be geriatric in the maternity world; 2) have a full-blooded brother with Down Syndrome; and 3) have received A LOT of radiation and some chemotherapy. Before we walked into the appointment, I joked with Mike that the doctors and geneticists would probably be wearing epidemic hazmat suits to conduct the ultrasound.
After contorting my body into several shapes as a way to get the baby to move his position, the doctor deemed that she was unable to get the “one last heart image” that she needed to be able to check off all of the boxes and send us on our happy, healthy way.
She asked that we make a twenty-week appointment at Tufts Boston in their maternal fetal care unit. She claimed it was because she couldn’t get the baby to move and that once he had two more weeks to grow and get bigger, they would be able to see the image they needed.
Since I am relatively fluent in “doctor speak,” I was skeptical that this was actually the case, but gave her the benefit of the doubt and hoped for the best.
After an hour of imaging at our twenty-week appointment in the city, a different doctor came into the room to tell us they were having “a difficult time getting the baby to move so that they could view the top of the heart.” The vessels didn’t appear to be the right size. She said she wanted us to follow up with a pediatric cardiologist for an echocardiogram.
And then, I stopped time.
I closed my eyes. I didn’t even bother to cover my face with my hands. I was lying on my back in the hospital bed with my belly still exposed, shiny and wet with ultrasound jelly. My head was resting on a flat pillow and Mike was sitting next to me, on my left, in a chair. He’s always sitting next to me, on my left, in a chair. I’m regularly laying in the bed. I don’t know where the doctor and the tech were looking, but the room fell silent.
I suctioned the inside of my cheeks and lips towards my teeth and swallowed hot, stinging tears down my throat that had just been scoped two hours earlier, a few miles away at Dana Farber. I willed myself not to cry.
I took a deep breath and opened my eyes. I did not look left or right. I looked straight at the doctor. I asked questions regarding the baby’s heart, asked for anatomical terms, and exactly what she would be writing on her report for the cardiologist. I told her that I had a medical history and percentages and likelihoods are not part of my equations. I just needed to know all of the facts.
She and the tech left the room and I sobbed. Mike hung his head and let me cry in peace without any interruption. I went into the private restroom that was in our room and put both of my hands on the sink and leaned forward. I looked in the mirror. My face was red from the pressure of my heartbreak. My eyes looked blurry through the magnifying glass tears, but the blue was a sparkly stark contrast to my cheeks. There was so much wholesome and pure sadness staring back at me that it made me want to weep even more.
I let myself feel all of the pain until I was done crying. I took big inhales and exaggerated exhales and let my lips inflate with each out-breath. And then finally, I grabbed a stiff paper towel and ran it under the cold water. I wiped my eyes and my cheeks. I fixed my hair. I opened the door to let Mike hold me. We said, “What the fuck,” in unison and then walked out to make our follow-up appointment.
Mike, Sam and I escaped to the White Mountains for three days. It wasn’t a fight or flight response. It was an act of self-preservation. We got out of our regular-ness and our routine. The outdoors did what it does best. Without sounding like feathers and unicorns and granola-for-days, nature TRULY is the most healing place on our planet. I let the mountain air fill up nostrils, my throat, and my lungs. I baptized myself in one of the rivers that runs cold over smooth rocks while little guppies swam by my feet. I watched Sam Soucy ride his bike fast through our campground. I stared at the fire in front of me as I cooked my family supper on its flames. I listened to its crackles and whistles and let the trees encompass my tiny (in comparison!) body in a way in which I felt held.
On our drive home, I put on my game face. NOT the face that changes who I am, but the face that gets shit done while continuing to breathe. It has been go-time ever since.
Last Thursday, we met with a pediatric cardiologist at Tufts. After one hundred and forty-nine more images, he too could not see exactly what was going on with the heart because the baby refused to open his arms away from his face. He DID say that “something is not right.” I asked if this baby would be born. He said definitely, “yes.” He assured me that whatever the problem is, can and will be corrected once the baby is here. That is the greatest news of all time. We all know people who haven’t been fortunate enough to hear those words, and I’d like to be sensitive to their stories and keep mine somewhat relative.
After a beautifully orchestrated fate of Universal events that only makes me believe in God even more than I already do, and that some would categorize as a “coincidence,” I had dinner with my friend Gina last Saturday night. We hadn’t seen each other in years. Just so happens, her brother is a PA at Children’s Hospital in Boston on their Cardiology unit. Obviously. She called him to chat about our situation, and then he called me, and in less than 3 days, I had transferred care from Tufts to Children’s because it feels better having a friend on my team.
I am not losing my shit because I’m not in control of this. I don’t have power over much of what life hands me. The pediatric cardiologist at Tufts kept asking me if I was ok with everything he told me. I think he thought I either didn’t understand what he was saying, or I was trying to cover up my feelings based on what he was telling me. I have a trained mind. But I’m not a warrior, or a soldier, or any other being that is in a fight or prepared for battle. It’s one of the greatest lessons I learned during cancer. I’m not adding “combat” to the list of things I need to do right now.
This is clearly not what I want. Extra amount of time laying in hospital beds and chairs for Mike that are always placed to my left?! What kind of voodoo shit is that?! I would rather have a normal pregnancy and the regular birth that I didn’t get to have with Sam. I would rather Sam have a healthy baby brother. If the baby isn’t healthy, then it somehow replay’s my own story. That may be one of the hardest pills to swallow.
But the ultimate truth is that I am right where I am supposed to be.
That being said, do I lie on the floor dormant without making any steps in a direction to better my situation? Fuck no. I keep fucking going. I do whatever I can while maintaining integrity and kindness. I’m not even holding onto hope as a conductor. It may sound sad to you, but it’s not to me. Of course, I’m hoping the next echocardiogram will show a healthy heart and surrounding parts. But sometimes hope has a way of letting us down. Sometimes, “everything will be ok” even leads to expectations. My mantras are clear because they bring me peace. I’m clutching to: You are not in control of this and keep going.
I try to live an honest life based on truth without trying to cover up my actions, feelings, or thoughts. I believe that if I live this way and avoid getting caught and stuck in the rabbit hole of “what if’s and shoulds and shouldn’ts,” then the path forward is a bit more clear. It’s slightly easier to navigate without all of that baggage to weigh me down. It doesn’t make the road any less bumpy (I am not a magician), but I find my way onward even when the fog is thick in the distance.
At the end of the day, our unborn son is already making his life a story worth telling.
And THAT makes this thirty-nine year old mother very proud.
*I am being vague with some of my medical terms and explanations to keep SOME privacy. We know a bit more than what I have written, but we don’t know all of it. Once we have an actual diagnosis, then I will update with a follow-up blog. I wrote about this in real-time to maintain transparency and vulnerability because it everything that I believe in.