It was our fourth day in the Mary Birch NICU. The only thing that kept me from feeling like a seasoned veteran were the stories of other babies around us. Our neighbor had affectionately been nicknamed “the old man” by staff. He’d been there for four months. His twin didn’t make it. Yesterday, he outgrew his incubator and graduated to a crib.
Life in the NICU felt like a waiting game. Francie was stable and feeding well, but we had yet to talk to the cardiology and cardiomyopathy teams. I’d occupied my time with learning as much as I could about neonatal and newborn hearts. I pestered anyone who would talk to me with questions.
“What’s the new left ventricular ejection fraction?”
“What’s a normal number?”
“What’s the difference between a bullet measurement vs biplane Simpson’s?”
“What’s the new tricuspid valves regurgitation gradient?”
I convinced myself that if I asked enough questions, I would uncover the solution. I would finally get an answer. Is Francie going to make it? Is she going home?
Our current plan was to stay at Mary Birch through the holiday weekend and then transfer to Rady’s to finally meet with our cardiomyopathy team. Laura had been discharged, but we were able to secure a “hotel room” on the fifth floor to maintain easy access for feedings. And we weren’t ready to leave Francie and go home. Knowing that she was a quick elevator ride away let me sleep peacefully on a rock-hard hospital couch.
We were biding our time until Tuesday when we could finally meet with our team of heart experts. It was all I thought about. After two days of only getting through to fellows at Rady’s, I made the seven-minute walk to their building to plead my case. Was there anyone we could talk to today?
I’d become very familiar with Rady’s cardiology unit over the past few weeks. When I arrived, the lobby was empty, the doors were locked. I went to general check-in and pleaded my case to a wide-eyed security guard. After he heard the words “newborn,” “heart transplant,” “not supposed to live,” he stopped me mid-sentence and walked me back to the charge nurse.
I started my story over. I was feeling out of breath. A collection of nurses stopped what they were doing and listened. They were supportive, encouraging, but they sent me back with a clear message: we had to wait until Tuesday. The people we wanted to talk to weren’t there.
Then Tuesday came, our fifth day. We’d been at Mary Birch long enough that familiar faces of nurses and doctors were circulating back through the unit. Dr. Suri’s presence could quickly be felt as he stepped onto the floor, made his rounds, hugging friends and joking with sonogram techs.
His head finally poked around our curtain. He was beaming with enthusiasm. Our inevitable transfer to Rady’s—it wasn’t happening. “You’re being discharged!”
Francie’s most recent echo showed she was stable enough to leave the NICU and shift to out-patient management. We were going home.
You might think that that moment was full of joy. It can better be described as confusing.
We would be leaving the comfortable routine of the NICU behind. I’d grown to trust that Francie was in the right hands, constantly monitored. We were leaving before we talked to the cardiology and cardiomyopathy teams. We were leaving with no answers. Was Francie in heart failure? Would she still need a transplant? Was this a honeymoon period? What about her non-compaction? Now, I felt like my umbilical cord was being cut.
Laura and I had planned for everything! Everything except taking Francie home. Nurses and doctors now encouraged us to just be parents. Just enjoy having a newborn.
Should we buy a newborn monitoring device to continue to track her heart rate, respiratory rate, and oxygenation levels?
The answer was a resounding, “No!”
Buy diapers? Cute outfits? Toys?
“Yes!”
Of course, we’ve had two other infants. We should be ready to go—you would think.
A fit of organizational zeal had seen Laura purge almost all of our newborn supplies: outfits, toys, yes, even our beloved Snoo! Even more, we hadn’t shifted our mindset. There was a rhythm to newborn life. A carefully choreographed dance that mom, dad, and baby perform together, teetering between the edge of bliss and sleep-deprived insanity.
Feed, pump, diaper change, bottle, nap, cry, repeat. The only variable: who’s crying.
We hadn’t practiced the steps, but the stage was set, the curtains were opening, and the spotlight, hot!
Don’t get me wrong, we were thrilled to be going home. Still, after weeks of steeling ourselves for the inevitability that, even if all went well, we would return home without a baby, it was hard to let your guard down. I wasn’t ready to step through the door of hope, not quite yet.
The next few hours were spent hurriedly packing up a week of chaotically accumulated snacks, laundry, and medical supplies. Finally, all that remained were the discharge papers. And then, just like that, we were winding our way through a maze of hallways on our way out of the cozy darkness of the NICU into the brilliant daylight. Becky Coulter, a friend through Junior League and NICU supervisor, carried Francie in her arms. She had been an instrumental advocate during our time at Mary Birch. She stopped at the front desk to verify our IDs with security, and then Francie was in Laura’s arms.
We scrambled to have my parents bring a car seat from home, and I had it quickly installed. Now, in the bright light of day, as I strapped Francie into her seat, I noticed how small she really was. Seven pounds, nine ounces, looking straight back at me. Waiting to see what the big world had in store for her.
For most of her pregnancy, Laura associated Francie with hydrangeas. “Wilder is sailboats, Shiloh is butterflies, and Francie is blue hydrangeas,” she said.
As we pulled up to the house, there were newly planted hydrangeas in a hedge around the outside of our house. I knew it was likely that we wouldn’t return home with Francie, even if she came out fighting, so I had organized the planting of the new hedges with our amazing nanny Carolyn as a surprise. I figured even if Francie was in the hospital, we’d have a little bit of her at home every day. Now we were unbuckling her from her car seat and walking past the blue blooms into our house. We’re home!
Watching the kids mob their little sister and press their faces close for gentle kisses made everything worth it. This feels right! Where two used to feel complete, three now seemed necessary, inevitable. My heart grew in size. Laura and I were now parents of three.
The first night was hard for me. I couldn’t relax. Her arms too limp. She was breathing too fast. Her feet seemed a bit blue. Maybe we came home too soon.
The next morning, we retraced our steps and finally found ourselves at Rady’s waiting to meet with Dr. Bock on the cardiomyopathy team for our scheduled meeting. Finally! We’d have our answers!
Dr. Bock walked in, and we tripped over the backlog of questions that had been piling up. He was patient, thorough, and detailed with his responses. The update: Francie had the best outcome we could have hoped for, so far. Post-natal changes had resulted in improved function, and we’d seen the size and shape of her ventricles normalize. Over the next six to eight weeks, pulmonary vascular resistance in Francie’s heart and lungs would continue to change. This would be a critical period to determine whether Francie would continue to thrive or need additional support.
“Ten percent of babies like Francie find a way to recover and go on to live very normal lives without surgery or medicine, eighty percent live in some stage of heart deficiency or heart failure and can be treated medically or with smaller surgeries, and ten percent require heart transplants,” Dr. Bock shared.
I was still trying to adjust from a world where we felt Francie would absolutely need a transplant to thrive. She still might, but the door had swung open for a more normal life. I wasn’t completely ready to walk through it, but to even have a crack in the door felt like a miracle.
There was an alternate universe where Laura didn’t have a thirty-week ultrasound. We never discovered Francie’s cardiomyopathy in utero. She had a very normal birth and at our first pediatric appointment, a small concern was raised for a slightly abnormal heartbeat. In that world, our epic struggle became a more easily understood concern.
It’s easy to see everything that’s happened through a lens of inevitability. Of course, she was a fighter. Of course, she came home. Of course, she wouldn’t need a heart transplant. We’re so used to a Hollywood script that it’s almost expected. But make no mistake, this is a miracle. I will always choose to believe that the many earnest prayers that our family and friends far and wide have whispered helped write this amazing story. I will not take this for granted.