My son is coding again.
It’s the second time in 20 minutes, and by now, I know the drill. The doctor directs the team of nurses who surround my baby’s tiny body: They assemble like a regiment of soldiers, as she stands back and issues the orders. “One minute,” the doctor says, her voice sharp. My son’s primary night nurse starts counting off in fours, compressing again and again.
It’s like every scene on every medical soap I’ve ever binged on Netflix, only real life. My son’s life. My life.
He is dying, and there is nothing I can do to stop it.
“Do you want me to call the chaplain?” a voice asks gently. A nurse with the neonatal intensive care unit ― someone I’ve never met before ― peers at me in a way that I’ll become familiar with. Her hand is on my shoulder. When I tell her no, that’s all right, she nods, like she understands that for me, there is no place for any kind of god here.
“Thirty more seconds,” the doctor calls. Somewhere, not too far away, I can hear babies crying and gurgling. My son hasn’t been able to do those things yet, because he’s been on a ventilator for almost his entire six weeks of life. Soon, he never will.
Before he dies, my son will code twice more. The doctor will keep him alive until my husband makes it to the NICU, and she will cry when she tells us there’s nothing more they can do.
“I’m sorry, guys, but this is happening,” she will say.
Even then — even when I am watching my son die — I will not believe it’s real until the nurses tell us we can take off our masks.
“It’s OK,” a nurse will tell us as I try to blow my nose without removing the mask. My husband’s is already soaked through. “You don’t need them.”
And when I do what she says, I’ll realize that I’ve spent up to 24 masked hours a day in the NICU since my son was born 17 weeks prematurely. From the moment I first put my hand on his 1-pound, 5-ounce body, I’ve been trying to keep him — and all the other babies in the NICU — safe from COVID-19. Every single day for 42 days straight, I’ve gone through multiple security checkpoints to get to him, held my breath walking through the hospital hallways just in case. I’ve scrubbed my hands under hot water until the skin along my knuckles began to crack. I’ve worn a mask while sobbing, while pumping every three hours, while holding him, while pressing air kisses against his tiny forehead, while wringing my hands through his emergency heart surgery, while watching a team of doctors and nurses save his life, while sleeping in a recliner outside his cubicle for four nights straight.
Every time my baby has looked at his parents, from the first day he was finally able to open one eye, he’s seen us with those masks on. Now, while he looks at us for the last time, he finally sees our full faces. Our real faces.
I hope he knew who we were.
If you have never had a micro preemie in a pandemic, let me tell you what it’s like.
You will be rapid-tested for COVID-19 after throwing up twice in the ambulance on the way to the hospital. You will be so exhausted and humiliated that you will sob like a small child. Once you go into labor, your partner will not be able to leave the hospital until you’re discharged. Not even to get something out of the car in the parking lot. When you and your baby almost die in labor, no other family or friends will be permitted to visit. Frankly, you’re lucky you’re even allowed a support person at all. Who are you to cry that your mom can’t come to hold your hand? There are people dying in the same building who haven’t seen their spouses or children in a month.
In the NICU, the director will tell you that parents have only recently been allowed to visit their babies amid the pandemic. He fought hard for it, he says. Babies need their parents. Your commute is up to an hour each way, but the director tells you that some parents are traveling from Wyoming or Kansas to this hospital near Denver. Some families can’t make that trip at all during normal times, let alone during a pandemic.
The hours you spend beside your baby’s hospital isolette will be long and lonely, but you make friends with the nurses, and the hospital security team eventually starts nodding you through the checkpoints. They ask how your baby is. They wish you luck.
You obsess that you haven’t washed your breast pump parts well enough. You obsess about hand sanitizer. You obsess about how hot the water from the sink is, if you used enough soap, if you scrubbed hard enough. If you must stop at a store on the way home, you obsess about what you touch. To all the people who can’t be bothered to wear a mask, you want to scream, “I am trying to keep my baby alive! Please just let me keep my baby alive!”
There is so much anger. Anger at the people in your community and the country who complain about how inconvenient and uncomfortable masks are when you no longer think twice about sleeping in one if you have to. Anger that people are still complaining about not being able to go to a restaurant or get their hair cut when your parents can’t meet their grandchild.
You see, a baby pulls the universe in, narrows the wide scope of your anxiety to one sharp, immediate focus. And when your baby is sick? You might as well be navigating life through a close-up filter, the rest of the world blurring behind you. At the start of the pandemic, you worried about isolation and missing your master’s graduation and completing your thesis on time. Now, you worry because your baby’s weight dips below 1 pound. You worry when you hold his tiny hand during each of his hourlong scans for brain bleeds. You worry when the attending doctor calls one morning to tell you that your baby will be having heart surgery in two hours.
To be clear, even without the pandemic, what happened to my family is a nightmare. There is no sugarcoating how exhausting or mind-numbingly horrifying the NICU can be. I was acutely aware that what was happening to me is the worst fear of any pregnant person: I had a perfectly normal, healthy pregnancy, until I didn’t. Then I had to make choices about whether to keep my baby alive. That is something no parent ever wants to even imagine, and COVID-19 didn’t change that.
But I quickly learned, as I navigated my own personal trauma in the midst of a global one, that this pandemic compounds suffering. It is awful to plan a funeral for an infant; it is worse when you must make a guest list and maintain social distancing. It is even worse when you think, I am lucky! I am lucky they relaxed some of the guidelines surrounding funeral parlors the same day my baby died!
Every time I think about my son’s short six weeks of life, I think about how lucky we were. Lucky I was able to be transferred to a Level IV NICU in time for the doctors to save our lives. Lucky my baby and I had access to excellent insurance. Lucky I lived in a state that allowed my husband to be with me. Lucky we were allowed to see our baby at all, lucky to be able to hold him, lucky we made it in time for his death. Lucky my parents were willing to risk their own health — despite being in an at-risk population — and travel so they could help us take care of our preschooler. Lucky to have had so many healthy relatives and friends surround us with emotional and financial support, even despite COVID-19. Lucky we could hold a funeral that did our son and his life a small amount of justice.
It is insufficient to say my heart breaks for people who didn’t get all the things my family did. We are privileged, and I’m sensitive to that as I think about how to tell this part of my son’s story. Is it too soon? Is it too late?
I still don’t have the answer. All I know is that each time we share our stories with each other, we become less alone. My husband and I are not the only parents to have a baby during this pandemic. I am certain we are not the only parents to lose our baby, either. And we are absolutely not the only people who have had to navigate the black hole that is death and grief during a time when isolation is necessary and the idea of “normal” seems further and further away.
In the past, I’ve personally struggled with asking for help. I’ve also struggled to be honest when I’m not doing well. It’s more comfortable for me to skirt around the edges of pain than to peel it back — to say to my friends, my family, myself, what is abundantly obvious: This hurts.
But with my son, I felt none of that.
It has never been more clear to me how much we all need each other. We need to talk about the painful stuff, the things we fear we’re burdening people with. We need to reach out in the ways we can to stay connected. To stay human. To stay alive.
I remember when we were barely a week into our son’s life.
My husband and I hadn’t slept consistently since the beginning of April. We are emotionally and physically worn, struggling to form sentences. Because we’re afraid to be too far away, we’re staying in a hotel across the street from the hospital. I’m recovering from the cesarean section, still taking prescription-strength ibuprofen around the clock. Every time we drive to the hospital, my husband drops me off at the front and I wait for him to park the car. Sometimes, while I sit there, I watch new families anxiously wrangle their newborns into cars and imagine what it will be like the day we get to leave here forever with our baby in our arms.
Over the past few days, we’ve started to talk about the thing neither of us had wanted to admit out loud: We feel unbearably alone. It has been months since we’ve spent time with adults besides each other, and we’ve grown used to that. But this feeling crystallized in the moment my best friend and her partner stood outside in the hospital parking lot the day after I gave birth, masked and crying, waving up at my hospital room so we would know they were with us: We just wanted a hug. God, we just wanted someone to hold us both and lie to us that it would all be OK.
Tonight, we’re lying quietly on the hotel bed, trying to relax. The volume on our phones is maxed out in case the NICU calls. My husband’s phone chimes and we both start, but it’s just a message from a friend with a YouTube link. “Watch this together,” she says.
It’s a 10-minute video mashup of messages from friends across the country, a supercut of love and support and hope. Hope for our baby. Hope for us. Every single person says they wish they could be with us. Every single person tells us they can’t wait to meet our son when he comes home. Every single person is reaching out the only way they can — virtually — and holding us close.
Together, my husband and I sob, curled together in a sterile room that smells vaguely of stale smoke, and we cling to each other. It will be OK, our friends tell us. We are here. We are here. We are here.
Alejandra Wilcox is an audio journalist, writer, and storyteller currently based in northern Colorado. Her radio work has appeared on KGNU, among other Rocky Mountain radio stations. You can tweet her at @alejawrites.