I sat in the middle of a mountain of clean laundry tonight. Small, soft hills of little boy tees mixed with my husband’s gym shorts and a few of my nursing bras. A baby onesie stained with a faded orange trail of ibuprofen. The thin fabric of my favorite yoga pants, smooth under my fingers as I folded them and put them away. But as I turned the wrinkled corners of Max’s astronaut t-shirt into a crisp fold, I realized that I didn’t know when he had worn it last.
It must’ve been the day that we were in the hospital with Bennie.
The day that Sean and I woke up at dawn and slipped our sleepy-eyed baby boy into his carseat. The day that we kissed Max goodbye as the babysitter went back to sleep in our guest room. The day that we were too nervous to eat breakfast, or hold each other’s gaze for longer than a minute, or stop to pee or breathe or drift off into thought.
I wore my yoga pants that day. I wanted to be as comfortable as possible when I was comforting Ben. I wanted to be able to fold myself into a chair in the family waiting room, and tuck my feet underneath me when I was nauseous with worry. I wore a tank top, so that I could easily pump milk for him while he was in surgery. I wore a sweater that opened in front, so that I could wrap myself up to fend off the bitter cold of a shitty morning.
I twirled the loose button on my sweater as we waited for Ben’s surgeon to come find us. We tried to read the eyes of the receptionist as the phone rang and she announced to us that we could go wait for the doctor in the small conference room. “His tonsils were enormous” he said, as I sat up straight in my chair. “Much larger than we see at this age. We tried to be conservative. Like I said, it is very rare for a child this young to need this surgery. But it should definitely help with the apnea, once the swelling goes down.” A breath. A release. My hand found Sean’s and stayed there.
As the nurse led us up to the ICU, we heard a faint, hoarse cry drifting down the hallway. “That’s Ben” I said to Sean, and quickened my pace. “No, he’s up this way” the nurse reprimanded us, as she tried to usher us further along. The sharpness in Sean’s voice startled her, as we broke away and ran to Ben. “No he’s not…that’s our son right there” he yelled over his shoulder as he rushed toward the tiny cries. Ben was sitting up in a bed that was far too large for such a little boy, a nurse by his side rubbing his back as he coughed and sputtered and cried. When I lifted him up he was heavy with wires, and wet with sweat. He pressed his sweet little cheek against mine and sobbed, his voice cracking and catching and choking with fear and pain. I rocked him, sang the songs that he loves into the soft folds of his ear, and still he cried. I put him to my breast, knowing that milk and a snuggle was the one thing that would make it ok, and he started to suck, and screamed.
“His heart rate goes down and his oxygen levels go up when you stand up and rock him” the nurse said. “He doesn’t like it when you sit down with him in the chair”. I shot her a look. “These next 24 hours are going to be hard Mama” she said. “But you can do it.” I adjusted his wires. I tucked his bruised arm underneath mine so that I wouldn’t bump his IV, and we stood. And we rocked. And we rocked. And we rocked. And finally, as the medication took over, I sat gently in the rocking chair and eased him toward my breast. And he nursed. And then it was my turn to cry.
I watched Ben’s eyelashes flutter against his cheeks. I listened to the soft whisper of breath that had grown less labored and urgent after his surgery. I held him in my arms like I was holding him for the very first time, transported back to the hospital where we began together, falling in love all over again. My eyes closed. Ben slept. And I prayed to a God who I don’t always understand, that this would be a new beginning for Ben. That the silent pause that had kept him company throughout each night would give way to cleansing, healing, revitalizing breaths. For both of us.
I changed into pajamas that night, under the fluorescent lights of the hospital bathroom that the ICU families shared. I waited until Ben was finally asleep, until the monitors were beating in a comforting rhythm. I took everything out of his hospital crib before I dared close my eyes. It was dangerous to leave a baby in there with blankets, you know. Back to sleep. Nothing that he could possibly suffocate on or choke himself with. Except for the heart monitor wires that wound out the back of his jammies, and the little red light that connected his pulse ox monitor to his tiny toe. “Just cut a hole in the foot of his PJ’s so the wire can come out” I told his nurse. “I want him to be as comfortable as possible”. It didn’t matter that he had his own nurse watching over him as he slept. I stayed right beside him. It didn’t matter that he was hooked up to monitors that told us that he was breathing. I stayed awake to watch his tiny chest rise and fall.
I will never forget the sounds in the PICU that night. The hushed, grieving voices of the young couple huddled next to the crib on the other side of the curtain. The gentle shush of the volunteer who ran her fingers through a little boy’s hair as he drifted in and out. The spanish language soap operas that came from the TV at 3 am, so the little girl whose parents had left didn’t feel so alone. The urgency in our nurse’s voice as she rushed over to us and threw on the light, when Ben’s apnea made itself known over and over and over again, and the numbers on the monitor took a sharp dive. The silent pause of brief peace in the PICU, being replaced by a wailing alarm as Ben’s breathing fell into it’s own silent pause. And then another child paused. And then another. Back and forth, throughout the night, each sigh of relief being replaced by another deep, urgent breath.
And as my baby drifted fitfully in and out of sleep, to the white noise of alarms and cries and footsteps and machines, I knew that we would leave the next day. That our silent pause had a finite beginning, marked with the surprise announcement by the ENT doctor that “this is so rare that we only do a surgery like this on a child under 2 once a year”. And a finite end. 24 hours in the PICU to watch for complications. 24 hours to make sure that he tolerated the three different procedures well. 24 hours of listening to the monitors alarm and hum, as the nurses looped from bed to bed. “We heard about the video” they whispered, as I padded to the bathroom in the middle of the night. “Who’s your pediatrician?” they smiled. “This was a good catch. We don’t usually see this in little guys”. We had been blindsided. But after countless doctors visits, it all made sense. The sudden lack of weight gain, the long silent pauses as he slept, the constant colds that he couldn’t seem to shake. “Maybe you can take a video of him sleeping, if you’re concerned” our pediatrician said. “And it wouldn’t hurt to see if Max’s ENT could take a look at Ben when he has his next appointment.” she offered. We had no idea it would turn into this, but suddenly the pieces of the puzzle created a startling picture. “He’s pausing…right there…right there do you see that?” the Resident said to the Attending as the video played. “He wasn’t breathing that whole time!” This was apparently fascinating in a medical resident sort of way, while terrifying in an exhausted parent sort of way. And so it began, that an office visit turned into a surgery, and a surgery turned into a PICU stay, and a PICU stay turned into two weeks of drawing the blinds and circling the wagons, and focusing on what is most important as our littlest one recovers.
I ran my fingers over Ben’s stained onesie tonight, and folded it in a tiny pile next to the jammies with the hole in the toe. We had washed off the layer of fear that clung to us that night. But so many families were still there, under the fluorescent lights, rocking their babies and pleading with the numbers on the monitors to fall into safer rhythms. Praying that they would escape the silent pause. Dancing with their little ones cheek-to-cheek, showing God and all that is holy that they refuse to be separated. “Things can change for any one of us in an instant” the nurse said, as I walked the quiet halls with Ben nestled into the Ergo that night. “We have to be thankful for what we have”. Thankful, and humbled. Humbled by the grace, the courage, and the fight. Humbled by the kindness of volunteers bringing snacks, friends offering support, doctors checking in. Humbled by the length of the journey that other children are on. Angry that mama friends and their sweet boys have had to endure this, for far too long.
And I am, for once, at a loss for what to say. My dear friends have had to allow every inch of hospital life to invade their families, to alter their life journey, to shake them to their core. Our 24 hours was nothing, in the face of their courage. In the face of their indescribable fear. We went home. We are home. I am folding astronaut t-shirts and exhaling into the moonlight, as other families sit and wait. And worry. Stuck in the silent pause of uncertainty.
So if you’re wondering where we’ve been the last few weeks, here we are. Ben is recovering slowly. It’s been a harder road than we expected, and we’re being extra cautious because of his age. We are hibernating. We are holding each other. We are thankful, and humbled, and terrified, and exhausted. We are ashamed that we have felt this so deeply, when others are suffering so greatly. We are medicated. We are hopeful. We are listening to Ben breathe, and thanking God that it is easier now. When I rock Ben to sleep at night, there is no longer a pause. The darkness is filled with the sound of him nursing, the sweet relief of suck, swallow, suck, swallow. No gasp. No familiar pause. He breathes softly, and gently, and settles in to my arms with a whispered sigh. And we rock. And we rock. And we rock.
