The first time my daughter died was on my 35th birthday. She had her third open heart surgery scheduled for 8:00 am; the cardiac surgeon planned to either repair her leaky mitral valve with a commisuroplasty or replace it with a mechanical valve. At this point, we were seven days into her hospital stay and she’d been touch and go for the last 36 hours, so we were relieved she’d be going into surgery. In addition to repairing this new issue with her heart, it would also give us the peace of mind that she couldn’t die, as long she was connected to the heart-lung bypass machine.

While we kissed her and told her we loved her and would see her soon, her care team prepared to move her down to the OR. They got one last set of room vitals, then transferred her from the room ventilator to a transport ventilator. Except the transfer ventilator never turned on. Her blood pressure started to crash. I pointed this out the the surgeon’s PA, who dismissed me as kindly as she could. Finally, I shouted, “HER BLOOD PRESSURE!” The whole team stopped their checklist of transport protocol to look up at the monitor. The PA turned to the respiratory therapist. She shrugged, “It happens sometimes.” The room rapidly filled with over a dozen people as the ICU team went into action.

Although I felt time slow down to one frame a time, I know the PA started chest compressions almost immediately. The team switched her back to the room ventilator. An intensivist asked the PA if she needed him to relieve her from compressions; I know now that rotating every two minutes is common practice in CPR. She said “no,” and continued chest compressions while everyone else took on roles: monitoring vitals and airway, counting compressions, taking notes. Eventually, someone shouted, “Let’s get her out of here and down to the OR. Let’s get her on bypass.” They disconnected her from the room ventilator and began bag valve mask ventilations. The PA relented and let the intensivist rotate in for compressions. They moved down the hallway with carefully choreographed movements and told us to come with them. Just in case, I guess. We went down to the first floor in the elevator with them, holding her tiny, bruised hands and telling her “I love you, don’t leave, we love you, please stay,” over and over like a protective prayer. They let us go right up to the operating room door with her. Other surgeons stood in the hallway, looking at the room assignment board and preparing for their own surgeries. We stood there in shock, not understanding what just happened or what we should do now. After some unspecified amount of time, an ICU nurse found us and gently murmured, “Come on, you can’t be back here. Let’s get you somewhere safe.”

At some point, we went back to our room at the Ronald McDonald House. I don’t know how we got there. We lay in bed, alternating between wailing and sleeping. People kept calling and texting my phone to wish me a happy birthday, but I couldn’t turn it off and miss a call from our daughter’s medical team (being wished “happy birthday” still makes me cry uncontrollably and I no longer celebrate or acknowledge my birthday – it’s simply the anniversary of my daughter coding). So we sat and waited, leaping out of our skins each time our phones made a sound, thinking this might be the call saying she didn’t make it. We waited this way for eight hours to learn if our daughter had lived or died.

Finally, the call came. She made it through surgery. Her surgeon made the choice to place a mechanical valve. The first time they tried to take her off bypass, her numbers wobbled, so they quickly put her back on, but now she was off on her own. She’d be out of recovery and back in her ICU room for us to visit in an hour.

She never woke back up. Over the next five days, she began to take her own breaths under the ventilator. She wiggled her fingers. She started to urinate. But she never woke back up, and brain scans didn’t show very much activity as her brain began to swell from the lack of oxygen. The doctors told us they didn’t know what would happen. It had taken 45 minutes from her beginning to code for them to connect her to the heart-lung bypass machine, but the whole time, she received high quality CPR. We learned a new vocabulary: perfusion, blood gas, hyperkalemia, bicarb, peritoneal dialysis, third spacing. We rubbed her feet to keep her blood pressure up. Our friends signed up for shifts to spend the night with her, so that we could sleep more easily at the Ronald McDonald House, knowing that she wasn’t alone.

Four years ago today, in the early afternoon, her blood pressure began to drop again. In an attempt to get some of the extra fluid out of body, they’d attached a drain to her abdomen, and too much had drained too quickly. Nurses rushed in to pump her with bolus after bolus of fluid in an attempt to get her blood pressure back up. It didn’t work. The intensivist on duty, who looked like Major Dad, asked if we’d like to move past those “soft” resuscitation efforts to more compressions or defibrillation, explaining that her tiny body had already been through so much. We said no. As her blood pressure and heart rate continued to drop, people filled the room, but our vision narrowed and time slowed down to just her. We got to hold her for the first time in 12 days. One nurse stood by the monitor to silence the alarms each time they turned on. Somewhere in this time, I called my mother and told her to come right away; she magically appeared at the edge of the room. I read to our daughter from the book of Winnie the Pooh stories my mother gave her when she was born; those were the same stories she’d read to me when I was little. We whispered, “I love you I love you I will always love you I love you” so that it would be the last thing she heard. My husband and I passed her back and forth, but when she finally gave up fighting, she was in my arms, with her daddy holding her hand.

Four years ago today, my daughter died. She was 112 days old. She loved dancing, go go music, ceiling fans, Paul Simon’s Graceland, playing in water, snuggling, singing and giggling at her daddy’s jokes. She hated headbands and never met a stranger. We could take her anywhere and she’d happily and quietly hang out. She wasn’t a daddy’s girl or a mama’s girl; she was a community baby. I’d never felt broken, but she made me feel whole.

Sometimes I look at her one year old sister (who is missing a chromosome, but otherwise looks just like her), and catch glimpses of what my daughter would have looked like if she lived: peanut butter skin; impossibly long lashes on enormous, almost-black eyes; big, soft, dark brown curls; angel lips; a tiny, skin-colored seam down the tip of her nose. I look at her four year old brother, nine days older than her, adopted from eastern Europe, who we would never have known existed if his sister and her extra chromosome hadn’t led us to him. Like her, he is strong-willed, with almond eyes, a tiny button nose, curved pinkies. Her two year old brother looks nothing like her, but her cells float around in his body; sometimes I wonder if they helped to cure his cancer.

My phone is off today. Even four years later, it’s almost always on silent, because the sound of it ringing startles me: my body still wonders, “Are they calling to tell me she died during surgery?” But today, it is entirely off. My husband and I both took the day off, so we can stay home with our living children in quiet. We are snuggling them, enjoying them, stepping out of the room when we need to sleep or cry. They know they have a sister who they haven’t met. Her photo is on the wall next to theirs. They know her body stopped working and she died. They know today is the anniversary of the day it happened, and that we are sad because we miss her.

We miss her. We miss her so much.

Tierra

A malcontent with a heart of gold, Tierra is a first-year medical student, former high school teacher and history PhD candidate, plus mom to four of Bebe’s baddest kids. She curses a lot. Tierra is a DC native but lives in southwest Michigan and will happily exchange writing (hers) for cash (yours).