Beauty Out Of Chaos

The most beautiful experience of my life was the third time my daughter almost died.

This piece is part of my daughter’s birth story. You don’t need to read what I wrote previously to enjoy this piece. But if you’re interested, start here 👉 The Hardest Day Of My Life (Part 1).

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The most beautiful experience of my life was the third time my daughter almost died.

It’s June 7th, 2018. My daughter Emily—“Em”—is only three days old. She wasn’t breathing at birth and was put on a 72-hour body-cooling protocol, called therapeutic hypothermia, to help her brain heal from the temporary lack of blood and oxygen. You can think of it as icing her brain injury.

The room is small, as far as hospital rooms go. There’s a knee-high refrigerator to store pumped breast milk, a small white sink, a beige vinyl recliner with wooden armrests, and a couple of grey hard plastic chairs. Babies don’t need a restroom, so my wife Allison and I have to walk down the hallway to get to the nearest one. We eat all our meals upstairs at the Mountain View Bistro.

We stay here in overlapping shifts so we can both get some rest and a shower at the hotel the social worker booked for us. Every family in the neonatal intensive care unit (NICU) is assigned a social worker to help with any questions and to get them access to services and accommodations. I’m a night owl, so I stay up late and sleep in the uncomfortable reclining chair until Allison gets here early in the morning. Then I grab breakfast and hang around the room until the doctor does his rounds. I’m always armed with a list of questions jotted down in the notes app on my iPhone. After the doctor leaves, I say goodbye to Allison and Em and go to the hotel to take a nap and a shower.

It’s been the three most stressful days of our lives. Em’s prognosis still isn’t clear.

Allison’s Dad and his wife Beth are visiting for the first time today. They brought my nine-year-old stepdaughter Sara to visit Allison. We’re holding off on letting Sara see her new sister since all the wires and tubes attached to Em might be scary for her. Allison is upstairs eating dinner with her Dad and Sara, while Beth and I visit in Em’s room.

We’re sitting on the grey plastic chairs in front of Em’s isolette and I’m giving her a verbal tour of the room. First-time visitors can get overwhelmed. Em has electrodes on her head monitoring for seizure activity, an IV in her wrist giving her fluids, a feeding tube in her mouth giving her the breast milk Allison has been pumping, and a tube in her mouth to help her breathe.

I point at the monitor up near the ceiling to the left of Em’s isolette—the same monitor I spend too much time staring at each day.

“The big, green number on the top right is her pulse,” I say to Beth. “The number right below that is her blood oxygen saturation percentage—we want that one to be between 95 and 100% at all times.”

The monitor makes regular beeping sounds indicating that all is normal. If her saturation dips below 90%, an alarm goes off that sounds more like a digital chime than an alarm clock. If it dips below 75%, the alarm gets louder, faster, and sounds like a TV game show buzzer going off over and over.

“When it gets that low, the nurse will come in and suction out her secretions in her throat,” I say. In the hospital spit becomes secretions. “That will usually clear it up so she can breathe more easily and the number will pop back up pretty quickly.”

You learn all these things fast when your newborn baby’s life is on the line.

Suctioning Em has been a regular occurrence during the past three days. The nurses usually get her stable again without issue. But yesterday she stopped breathing for a short while and the nurses had to call a code. The doctor rushed in and intubated her immediately, which brought her saturation back up. It was an intense moment and gave me flashbacks to right after she was born, the first time she had to be intubated, but it was over almost as fast as it began. Allison and I felt helpless as we watched from outside the room. There was nothing we could do except watch. No parent should ever have to see their child be intubated once, much less two times.

Part of the reason Em has been struggling is that she’s on medication that causes drowsiness. The doctor also thinks she’s having a tough time swallowing. I did some research online about babies who have gone through the cooling protocol and found they are often diagnosed with cerebral palsy later on. I asked the doctor about it during his morning rounds yesterday. He said it’s likely she will have it, but it’s impossible to know the severity at this point. They will be doing an MRI once she’s more stable, which will hopefully give us some clarity.

I continue telling Beth about other details and how the past few days have been. It feels good to talk. The talking is therapeutic and it helps make what we’ve been dealing with feel less frightening. It’s amazing how quickly we’ve adapted to living with so much daily uncertainty. When I recount our experiences it almost feels like they happened to someone else.

I hear the chime of the first oxygen saturation alarm go off and I glance at the monitor. Em’s saturation is slightly below 90%. Most of the time it will revert above that magic 90% threshold right away, but this time it’s heading down further. I notice Beth shift in her seat. She looks nervous. But I’m not worried because this has been happening so often every day.

“It’s okay, the nurse will come in if it doesn’t go back up,” I say.

Seconds later, Em’s saturation suddenly drops below 75% and the louder, faster alarm goes off. The nurse runs in, shuts off the alarm, and turns on the suction machine.

“Here’s when the nurse will suck out her secretions with the suction machine,” I tell Beth. I’ve now become a NICU play-by-play commentator.

The nurse does exactly that, but Em’s saturation keeps dropping. Another nurse comes in to help. I could see the panic rising in Beth’s face again. I tell her this has happened many other times and once they clear Em’s airway she will be fine. It’s become a periodic routine throughout the days and nights. The code yesterday was a rarity. I'm sure of it.

Em’s saturation goes back up above 75%.

“There they go,” I say, “they’ve got it.”

And just as rapidly, it plummets again. The nurses try to position Em’s head and neck in different ways to get to whatever’s restricting her airway. Her saturation continues to go down, yet I’m still calmly explaining everything that’s happening to Beth. I want to assure her that the nurses know what they’re doing, even though it might not look like it. Trying to manage Beth’s anxiety is the only thing I can control.

Suddenly one of the nurses steps over to the wall and presses the red emergency code button. Oh, shit. Here we go again. My heart drops and I feel my jaw tighten, but I remain stoic. I don’t want to freak Beth out.

I turn to her and say, “They just called a code. You might want to leave the room.”

The button triggers a hospital-wide announcement which I know Allison will hear in the Mountain View Bistro upstairs. At least, I hope she hears it and can get down here.

In what feels like less than thirty seconds, about a dozen doctors, residents, and nurses descend on Em’s room. But I don’t see Dr. W, the neonatologist who’s on the unit this week. I move to the corner to get out of everyone’s way.

One of the residents raises her voice and says, “I’ll take notes, everyone. Just yell out what you’re doing each step of the way.”

It’s a chaotic scene and it’s hard to see Em. Six people surround her isolette and others on the periphery are handing them supplies as needed.

A few minutes later, Dr. W bursts into the room. He has clearly been sprinting to get here. He takes his place at the head of the isolette and a nurse moves to the side.

She tells Dr. W, “I think we should remove her intubation tube so we can suck out the blockage more easily.”

“I agree, do it,” he says.

I’m surprised by the quickness and confidence of his response. I guess he must be decisive in time-sensitive situations like this. Hesitation could be the difference between life and death.

The nurse leans over the edge of the isolette, removes the intubation tube from Em’s mouth, and hands it over her shoulder to one of the residents. A nurse on the other side of the isolette is ready with the suction machine. Dr. W has an oxygen mask he puts on Em in between the suctioning.

I look to my right through the open sliding glass door to Em’s room and see Allison. She looks terrified. Her eyes are fixated on the scene around the isolette and she doesn’t notice me looking her way. I want to comfort her and I want to stay with Em, but both are not possible right now.

Em’s saturation finally starts to creep up. Dr. W tells one of the nurses to order a different breathing apparatus because he doesn’t think Em should be intubated again. Was Em just trying to tell us she wanted that damn thing out of her throat?

One of the nurses leaves the side of the isolette and I walk over to see Em. I reach down to hold her tiny hand and I say, “You’re safe, Em. Daddy’s here.” Her head is turned away from me and she doesn’t move. But I know she’s okay. I can see her chest rising and falling. The alarm has stopped and the monitor shows Em’s saturation is nearly 100%. I breathe a sigh of relief and feel my jaw relax.

I look outside the room again and catch Allison’s eyes this time. I gesture for her to come into the room next to me. She shakes her head no, but I mouth the words, “It’s okay now,” and she makes her way to me.

I reach out to hold Allison’s hand and I pull her gently next to me on the side of the isolette.

“Talk to her,” I say.

Allison takes a deep breath, exhales, reaches out to touch Em’s hand, and with a smile, she says, “Hi Em, it’s mama.”

Em slowly turns her head to her left and looks up at Allison. She knows it’s her mother talking. She’s heard that voice for months while in Allison’s belly. I think back to the times Allison would talk to her directly and realize Em was a real person in there all along. Since she was born, she has felt more like a problem to figure out than a person—her humanity obscured by medical devices, lab results, and numbers on a screen. Now I can see the life in her eyes.

I wrap my arm around Allison’s shoulder and reach my other arm down into the isolette to hold both her and Em’s hands in mine. I’ve never felt so close to Allison. We’re like two soldiers that have been in the trenches together—we’re the only people who understand what we’ve been through.

Em has endured so much already in her short life. Things nobody should have to go through, let alone an infant. I’ve only known her for three days now, but she’s the toughest person I’ve ever met.

I don’t think she’s out of the woods yet, but with how resilient she is, I like her chances.

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