The most beautiful experience of my life was actually the third time my daughter Emily almost died.
By Lyle McKeany
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.
The room is small, as far as hospital rooms go. There’s a 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.
These have 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.” You learn all these things fast when your newborn baby’s life is on the line.
Suctioning Em has been a regular occurrence. The nurses usually get her stable again. But yesterday she stopped breathing and the nurses had to call a code. The doctor rushed in and intubated her. It was an intense moment and gave me flashbacks to right after she was born, the first time she had to be intubated. Allison and I felt helpless as we watched from outside the room. No parent should ever have to see their child be intubated once, much less twice.
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 and he said it’s likely she will have it, but it’s impossible to know the severity.
I continue telling Beth about other details. The talking is therapeutic. It’s amazing how quickly we’ve adapted to living with uncertainty.
We hear the chime of the first oxygen saturation alarm go off. Seconds later, Em’s saturation suddenly drops below 75% and the louder, faster alarm goes off. The nurse runs in, and turns on the suction machine.
Em’s saturation keeps dropping. Another nurse comes in to help. I could see the panic rising in Beth’s face again. 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. I’m still calmly explaining and trying to manage Beth’s anxiety—the only thing I can control.
“The only person you should be trying to
be better than is the person you were yesterday.”
Matty Mu
Suddenly one of the nurses presses the red emergency code button. My heart drops and I feel my jaw tighten, but I remain stoic. I turn to Beth and say, “They just called a code. You might want to leave the room.”
I know Allison will hear in the Bistro upstairs and come down.
In what feels like less than 30 seconds, about a dozen doctors, residents, and nurses descend. It’s a chaotic scene and it’s hard to see Em with people surrounding her isolette. A few minutes later, the hospital’s neonatologist, Dr. Witt, bursts in. He has clearly been sprinting. He takes his place at the head of the isolette. A nurse suggests, “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 his speed and confidence. I guess hesitation could be the difference between life and death. Dr. Witt has an oxygen mask he puts on Em in between the suctioning.
I look to my right and see Allison. She looks terrified. I want to comfort her and I want to stay with Em.
Em’s saturation finally starts to creep up. Dr. Witt tells one of the nurses to order a different breathing apparatus. Was Em just trying to tell us she wanted that damn thing out of her throat? I walk over to see Em and reach down to hold her tiny hand and I say, “You’re safe, Em. Daddy’s here.” I can see her chest rising and falling. “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. 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, Em 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—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.
Lyle McKeany writes personal, vulnerable, and sometimes funny stories about the messiness of life at https://lyle.substack.com. He’s a proud husband, stepfather, and father to a daughter with cerebral palsy.
