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My baby daughter spent nine days on a ventilator. Here’s how it transformed my marriage.

How did the fear not swallow us up? Would it have, if she had died?

Perspective by
September 14, 2020 at 3:39 p.m. EDT

They didn’t tell me they were going to intubate my daughter until seconds before it happened. It was 2018, and I was lying in a hospital bed, cradling her 6-month-old body and all her wires in my arms. “Okay, Mom,” they said. They always called me Mom and my husband Dad. “You’re going to hand her to Melissa and then step out real quick.” The nurse grabbed the baby and my husband grabbed me. I didn’t walk of my own accord; Sean half-carried me from the room and I curled into my sobs on the waiting couch.

I don’t know how long we waited. It felt like an eternity. There was enough time for both of us to use the bathroom, for me to call my parents, for me to quiet my crying and then start up again a bit later. “I bet she’ll wear blue to prom,” I said at one point, speaking to no one as much as I was to Sean. “I hope she’ll still be alive at 17,” is what I meant.

He held me. The words of reassurance we would have offered one another were choked in our throats by the same fear. It’s a fear that so many families know intimately now: the sight of a loved one on a ventilator; the helplessness of watching them battle death.

To depend on someone fully was a weakness I could never accept. Independence is the mark of a modern woman, and even a modern relationship. I have seen people and bonds fall apart in the face of failure and loss, and to believe you cannot survive without someone is to be naive to the realities of life. My mind can draw up a Plan B in an instant. I can always survive.

But I wonder, sometimes, how we — my husband and I, together — survived and how we continue to survive. How did the fear not swallow us up, or seep in between us, whispering ugly things, true and untrue, in our ears? Would it have, if she had died? Could it still, in the future?

It all unraveled so quickly. Everyone assured me she was fine, she was fine, all new mothers feel that their infants’ sickness is the end of the world. This was normal. So normal they sent us home the first time we took her to the emergency room. And when I insisted we go back the next day, more people told me she was fine. Sure, she hadn’t taken in fluids in over a day and she was vomiting up mucus and she was wheezing as she tried to breathe, but she was just tiny, it would pass, it would all be okay.

They were right, and they were wrong, in the end. It would all be okay, but only after it was very much not okay.

Everything was okay, they said, but they were just calling the transfer team from the prestigious children’s hospital nearby just in case. Everything was okay, but my husband should run home to get things for us to spend the night just in case. Everything was okay, but they were setting up the kit to intubate her just in case.

Everything was okay, and then it wasn’t.

I told everyone I was fine after my miscarriage. I wasn’t. You don’t have to be, either.

A doctor finally emerged to tell us she had been successfully intubated. “She gave us a hard time,” he said with a small smile that was maybe meant to be reassuring, I don’t know. Later, as I rode with her in the ambulance on the way to the other hospital, the EMTs called to tell the receiving team that the intubation had been a mess and they had wanted to step in. Her little body seized as she started to wake up and they gave her more cc’s of this and more cc’s of that. The ventilator kept her breathing. I pulled up the route to the hospital on my phone and stared at the dot moving slowly along the path.

When we arrived half an hour later, it was the middle of the night, and I walked numbly behind the team of EMTs rolling her through the quiet hallways. They pointed me to the couch in her room as they moved her to her bed and hooked her up to monitors. Every beep was a siren alerting me to the possibility of her oncoming crash. Only one of us had been allowed to ride with her in the ambulance, but Sean was soon beside me.

When I recall that time, I think of myself as a soldier in battle and Sean my only companion in the trenches. For a period, there was no room for weakness or emotion. To let any of that in would have meant allowing myself to crumble, and I couldn’t afford to do so. When I called my mother to give her daily updates, her voice would break with sobs. “I don’t know how you can be so strong,” she would tell me as I informed her of my daughter’s dangerously high heart rate.

I slept on the little couch by the window; Sean was next to me on a foam mat on the floor. We spent nine days in the intensive care unit. Our daughter had contracted two common-cold viruses, but doctors never pinpointed why her reaction was so severe. At night, I lie awake thinking about the statistics of couples staying together after losing a child. In that time, when our nerves were stretched to breaking points, we never argued. We never snapped at each other. It would have been so easy, but we never came close. I was grateful for the understanding we came to without even speaking. We were on the same team, no matter what.

Valentine’s Day happened to fall halfway through our time in the hospital — before she was extubated, before we were out of the woods. The nurses tied some yellow gauze in a bow around her head to “dress her up,” as if anything could distract from the tube shoved down her throat. We did not celebrate. Neither of us bought a candy bar from the hospital cafeteria to offer the other a weak gesture of romance. We loved each other and we loved our daughter, and never had the day felt so inadequate at holding the vastness — the complications — of love.

Our daughter was intubated for six days; she spent the next three in recovery. I can still picture the terror on her face when they took her off the ventilator and woke her up, but I couldn’t yet hold her. Her eyes, beady and darting, held none of their usual brightness. She’s 3 now, and there’s nothing in her face or body that suggests she was ever close to death.

But these days, given the coronavirus pandemic, my anxiety about her health and safety is never far from the surface. Covid-19 has claimed a small number of children, but that small number could include my child. When she was sick, the doctors assured us there was nothing wrong with her that had caused the illness — she was simply unlucky. Could we be unlucky again?

Last summer, she caught a bug and her fever spiked to 103 in the night. She whined and cried, and we brought her into bed with us, her little body drifting in and out of sleep while Sean and I lay awake, frightened. I looked at him and had the same feeling I did in the hospital: that someone was really in this with me, in a way I had never experienced before marriage, before parenthood.

Terror threatened to turn into tragedy, and the stress should have broken us. Instead, it recalibrated how I thought of my marriage. We are several months into social distancing with two small children and no end in sight. Our hospital stay’s unspoken agreement to not fight is long gone; that was a sprint, and this is a marathon. Sean and I have bickered over things both small and impossibly big: putting away laundry and rolling down the bag of cereal, but also keeping the kids out of day care.

I miss my friendships, my independence, sitting down at a restaurant and escaping to a movie theater. I miss space and I miss quiet. But most of all, I miss not worrying that if our daughter gets sick, there’s a chance there won’t be a ventilator available for her.

Yet even in the moments of despair that could swallow me whole — perhaps especially in those moments — I think to myself that I could not survive this without Sean. It’s not just that I need a partner; it’s that I need him as a partner. That used to feel like a weakness, but now it feels like a strength.