Thirty three weeks

It was the date circled on the calendar. The date I had been praying we would reach. The arbitrary number doctors assigned to us as the ‘you-can-finally-start-to-plan-to-maybe-meet-your-daughter’ date. Clara was still the size of a micro preemie due to intrauterine growth restriction. If she kept developing and made it to thirty seven weeks then maybe, just maybe she would be big enough for the surgeon to operate on her complex single ventricle heart. Thirty three weeks signified the time stamp where we could finally start planning for this—her complicated and beautiful entrance into the world.

I started to exhale, imaging our lives with Clara in it for the first time in thirteen weeks. We had made it. Clara had made it to the date doctors tossed out like a winning lottery ticket—so slim were her chances of making it to this milestone.

The sun warmed our faces through the windshield as David and I drove up to Seattle Children’s Springbrook Pediatric Cardiology Clinic for this heralded appointment, coffee in hand as we marveled at our tenacious little fighter. We arrived early and parked our car. We filled time praying with shaky hands and eager hearts. There had been so many downs. So very few ups. This moment was a miracle. We basked in newfound hope.

 We checked in and waited. I signed papers, David filled up my water bottle and encouraged me to eat a granola bar. I looked at the two other families in the waiting room with newfound interest. These were the lucky parents. The parents who had children with complicated hearts and genetic conditions that were compatible with life. I contemplated the privilege to be upgraded in status and counted among them.

 The nurse called us back and we settled into our familiar spots—me on the reclining chair for the echocardiogram. David on the chair next to me, holding my hand. The sonographer began working, Clara came into black and white vision. Her full lips, slender profile and the steady beating of a heart we had stared at for hours through a screen began easing our wandering minds. The sonographer said she had worked with my mom at Seattle Children’s. I asked when. We made idle, yet meaningful conversation as often occurs in the sacred moments when a parent sees their child for what might be the last time. The sonographer said the picture of Clara’s heart was beautiful, so clear. I said it always was, no matter how small her size or complicated her anatomy.

 Time ticked steadily on. We were used to long appointments. Three hours was now a fast appointment. The sonographer stepped out to grab us two glasses of water and was rejoined by the chief pediatric cardiologist. We weren’t alarmed. Clara’s Trisomy 16 mosaicism was so rare and her heart so complex, nearly every doctor came in to take a look and talk shop. We knew he had been following Clara’s case closely. The cardiologist was looking for something. He asked me to roll onto my side, then roll back. “See it, right there?” he said. “Yes,” said the sonographer, “that’s definitely it. No question.” Again, they remarked on how clear the picture of Clara’s heart was; how helpful it was for the echo.

Feeling confident they had what they needed, we were moved down the hall for our high-risk ultrasound. I tried to focus on the positives—not the decline in Clara’s growth rate or the questions about her left arm and hand—but the bliss of staring at my daughter for an hour watching her sleepy newborn habits start to form in my protected womb. Her precious profile. I could stare at it for hours, wondering how it matched up to her sisters’.

We were moved into another room. The planning room. The room where a geneticist, high-risk Maternal-Fetal Medicine doctor (MFM) and the chief pediatric cardiologist would join us to prepare a plan for Clara’s birth. After about fifteen minutes, a nurse popped her head through the door, offering us more snacks. We declined. I ate another granola bar from my purse instead. The room was soft and white. It may have seemed sterile on a gray day, but with the sun coaxing its way through the small window, it was kind and calming. David and I started talking. Then we stopped. We nervously started talking again, filling space. Then we stopped. There is waiting. And then there is waiting. We were now waiting.

The door opened. The trio of specialists sat down. “Sorry for the wait. I was trying to get a hold of our chief pediatric cardiothoracic surgeon,” said our pediatric cardiologist. His eyes were kind, they reminded me of our dear friend Andy, a pediatric cardiologist in California. He started to draw Clara’s heart anatomy on the paper in front of us. “Let’s talk about what we knew before the echo, and add in what we know now.” The dark rims in his eyes started to brim with tears beneath glasses, and I knew. I knew Clara was going to die.