Thirty seven weeks

“But, her heartbeat is so strong,” said our nurse, asking a question without asking it.

“I know. It always is.” I answered her question in kind. I was approaching 38 weeks. Our nurse wanted to know what we all wanted to know. How could a three-pound girl with one of the most complicated combinations of critical congenital heart defects (CHDs) and a genetic condition documented in less than 200 people worldwide be so active, so normal, so seemingly healthy? How could Clara make it this far and still be born into a world where she might never make it past a day or even an hour?

The softness in my tone. My hand rubbing Clara in my belly. David’s gentle touch on my knee. They answered her question as I responded.

Our nurse took my blood pressure, a simple act I started dreading the second my previous appointment ended and that escalated in panic the moment I stepped into the check-in room. I couldn’t breathe with my heart thundering against my chest. I couldn’t find my balance between the room’s oscillating walls. I couldn’t think with the weight of my child’s life resting on my heart. Most mothers carrying babies with Trisomy 16 mosaicism give birth between 30 and 35 weeks due to hypertension. Clara needed to make it to 37 weeks.

My blood pressure was inching upwards, but well within the normal pregnancy range. I knew this. I knew I was part of the lucky 10 percent who had made it past 35 weeks. Even so, my blood pressure would spike at every appointment. White coat syndrome, they called it. Nerves, pressure, anxiety. The fear of a doctor telling me I needed to deliver Clara early for my health when her only chance of survival was making it to that 37-week milestone so her tiny heart might be operable.

“The solution is simple,” said our Maternal Fetal Medicine (MFM) doctor. “Don’t think about.” We’d both laugh. Impossible. I had a blood pressure machine at home. I always checked it.

This appointment was different. My heart wasn’t thundering. The room sat still. I could think. I didn’t even ask about my blood pressure. I knew it was fine. We were past 37 weeks. We had made it. Only now there was no viable solution for Clara’s heart.

We moved out of room B6, which felt like our own now, and into the ultrasound room. Its walls were the same periwinkle-gray hue as the intermediate check-in room. I should have hated them. Those four walls had listened to countless conversations about how my daughter was going to die. They had probably absorbed more information than David or I ever could in our continual shell-shocked state. Instead, I painted our master bathroom walls a softer, sister shade. The walls had also spent more time looking at our daughter than anything else in our lives. I loved them for it.

The sonographer walked in. She had done a few of our previous ultrasounds, but wasted no time talking. It was as if she understood the pressing gravity of time. Clara’s slender, straight little nose appeared on the screen, a miniature mirror of mine. Her right hand was next to her head where it always was. Clara was sleeping. I sighed in relief. I wanted to study her, to memorize her. Clara’s slight legs were normally kicking and wiggling, propelling her body up and down and around, making it hard to drink her sweet self in.

Clara was more active in the womb than most otherwise healthy babies. Our doctor told us this nearly every time we saw him. It was all so counterintuitive, even for our medical team. “We know how a baby should respond given a certain diagnosis, but even we can’t account for their spirit, for who they are,” he would say. “Clara keeps proving me wrong. I didn’t think we’d still be sitting here.” He said these words at least once during every appointment.

Our doctor was right. Time and experience had taught him there is someone greater at work than doctors, medicine and surgery. You can’t account for the person God creates and how their innate will is attached to completing His purpose, even as a baby. It was our job now to sit back and watch His creation—our Clara, bloom.

So, we watched. We watched Clara’s chest move up and down in a soft, rhythmic cadence as she intermittently sucked her thumb. We watched our daughter, who doctors said had “layer upon layer of complication” move in my womb with layer upon layer of perfection. We watched a sister, a fighter, a determined, driven, competitive second born. We watched a girl with her mama’s nose and daddy’s endearing inability to stay still prove the world wrong. We watched a girl who is the daughter of the highest King move in my womb with the vibrancy of life. We watched the daughter the Lord had taught us how to love with continual wonder.

My belly tightened beneath the ultrasound wand as we watched Clara, stretching my skin firm over Clara’s little body. I was starting to feel the early twinges of contractions. They were mild, but painful. I wasn’t sure if I would make it to another ultrasound the way my body was responding. I knew it might be the last time we saw Clara alive. I also knew it was only the start of our unending love for her.

Night after night, I kneeled, broken, on the floor sobbing, begging the Lord to teach me how to love our daughter, completely as she was. I was terrified of losing her. I was more terrified of not knowing how to love her. God had not answered a single prayer in the way we had hoped. Looking at Clara in that ultrasound room, I knew He had answered this one.