One day I went home for a couple of hours to shower, and when I returned, the five-year-old boy’s bed was empty. All of the cards, photos, and stuffed animals that had decorated his area were gone. The whole family was there, and his mother said to me, “Come see him.”
She led me down the hallway into a room I’d never been in before, a rarely used chapel where they brought the little ones who didn’t make it. “Look how peaceful he is,” she said. She was right. It was the first time I’d seen him free from tubes and machines, and he looked like he was smiling.
His older brother said, “I never saw him sleeping like that. He was always in pain.” That was an eye-opening moment for me. I could not pity myself for being in the hospital with my baby because, at the end of the ordeal, I would get to go home with him. My son was going to be okay. I would focus on the miracle that we had, not the challenges that went with it.
4. To Eat
I was scared to bring Nathaniel home. In the hospital a whole team of specialists watched over him, and they took care of me too, making sure I showered and ate. They had come to feel like family.
Before any parent leaves the hospital with a new baby, there is what seems to be a mandatory check to confirm that they have a properly installed car seat and know how to strap the baby in safely. Our discharge involved training in a special form of CPR, learning how to clean the g-tube and care for the skin around it, and making sure that we knew what supplies to have on hand and how to order new ones.
When parents leave the hospital with a newborn, they often take a photo, capturing the moment: This is us leaving the hospital. This is us taking responsibility for our own small, vulnerable creature. You can usually see a bit of nervous anticipation mixed with the joy in their eyes. When we were discharged from the hospital, to say we were nervous was an understatement. Nathaniel was twenty-eight days old, his life especially fragile. And it was all completely foreign. We’d had no examples of the kind of parenting we were supposed to do, not by our friends and families or in any movie or TV show.
Our little apartment in Hoboken was only two rooms, so during my final trimester we’d set up a crib in our bedroom. We’d picked a set of Winnie-the-Pooh sheets, and they came with a couple of pictures of Winnie-the-Pooh that I’d hung on the wall next to the crib. Russel’s brother Hal and his wife, Nancy, had thrown a baby shower for us at their house in Long Island. I still didn’t know many people in New York, so it was just Russel’s family, some friends of his from work, and my cousin. We hadn’t registered for gifts, but they’d given us toys and clothes, tiny white clothes that I’d carefully organized in a dresser with a changing station on top.
The first time I’d come home from the hospital to shower and get new clothes, I’d noted the empty crib, waiting expectantly for the baby who wasn’t healthy enough to sleep in it. The crib itself looked as innocent as we had been, so simple and steady in its belief that a baby would soon rest in its arms. How long would it wait, I wondered? How long would it be before my baby was detached from the machines that made it hard to cuddle him?
That moment had finally arrived. It was almost a month later than we’d expected when I rested Nathaniel in his crib, though a few changes had been made. Instead of the sweet, calm nest where I’d envisioned nursing him and singing lullabies, the room was surrounded by equipment, like a hospital room. There were tall poles from which feeding bags hung, and boxes of extra bags and baby formula filled the room.
During the time we’d been at the hospital, Nathaniel had already outgrown most of the newborn clothes in the dresser, and the ones that might have fit, he couldn’t wear. I cleared them out to make room for clothes with buttons in the front so we could easily access his g-tube.
Bringing a new baby home is always an adjustment. Taking care of this baby was going to be more complicated than feeding, burping, and the occasional diaper blowout. Nathaniel’s g-tube looked like an extra belly button, and for now it was the only way he could eat. But he had trouble keeping formula down, and “trouble” is an understatement. You know how things start hurting more after you leave the doctor’s office? Well, pretty much as soon as we got home, Nathaniel started throwing up everything he ate. There was a pump to continuously drip food through the g-tube. Instead of taking in formula through his mouth down to his stomach, it was the other way around. He threw up as I fed him. I dragged our ruined carpets out to the curb, resterilized the equipment, and tried again and again, desperate for him to keep anything down.
The nutritionist suggested variations on the formula. We measured ingredients, counted calories, tested different brands and products, but nothing worked. The doctors told me to set the pump on drip and feed him all night so he’d get extra calories while he slept. But if he wriggled at all, the tube would pop out and the pump would be feeding the bed instead of Nathaniel. I half-slept, keeping guard.
I wanted to give him a life that seemed normal to me. Babies are supposed to have “tummy time” to strengthen their spines, but Nathaniel’s g-tube made it very uncomfortable for him. I piled tons of blankets on the floor to cushion the tube and distracted him for as long as I could with books and pictures. His body was normal, and I didn’t want the issues he had to cascade into new ones.
I had one mom friend at the time. Russel and I had met Denise and her husband at a parenting class at the Jewish Community Center in Hoboken while she and I were both pregnant. Her son Joshua was born two weeks before Nathaniel, and I was still pregnant when we went to his bris. It was only later that I learned Joshua was born without one of his hands. Ironically, Denise told me she had covered him up so I wouldn’t see because she didn’t want to make me nervous about my upcoming delivery. Then I had a baby with much more severe issues—Nathaniel couldn’t even have a bris—so I could have used a little preparation. But we were still far from joking about that at the time.
On a good day, Denise and I could squeeze in a walk with the boys. The first time we went to the park, we tried to join a mommy group. They met with their strollers in a circle, presumably to talk about swaddling techniques and how their babies were sleeping and what diaper cream worked best. Denise and I tried to be a part of it, but our babies stood out, and the other new moms were kind of scared of us. Or maybe it was my envy that got in the way. In any case, our outings ended up being just the two of us.
Denise cried a lot. Although I did my share of crying, my exhaustion was the more dazzling feature of my social game. I was just so tired. I couldn’t relax at night. Sometimes Denise would come over to our apartment, take one look at my face, and say, “You take a nap. I’ll watch the boys; we’ll put on Baby Einstein.” I was great company.
Russel had returned to work, so except for our excursions with Denise and Joshua, Nathaniel and I were mostly at home alone, tethered to his g-tube. Though he could only hear muffled sounds, I wanted him to start listening to music because it was so important to me—before I married Russel, my whole life had revolved around playing the piano and studying music. It was part of what defined me, and I couldn’t imagine my baby’s life without it. I would turn on classical music, block my ears as best I could, then turn up the volume until I thought he’d be able to hear. I also sang and spoke loudly, close to his nonexistent ears. He was still too young to be responsive, but I hoped the sound was coming through.
Nathaniel: When I look at baby pictures of myself, I just see a baby. Sure, there are some tubes and contraptions, but all babies seem to have a lot of gear. My experience looks like one thing on the outside, but I was just a kid, born the way I was. The face that I saw in the mirror made sense to me. Visits to doctors were routine. I grew up with the understanding that my face was more complicated than everyone else’s—it didn’t work as well—but that was my world. Some kid might have to deal with his helicopter mom, his twin brother, his asthma. I think you have to lose something to feel the loss. I was born this way, and my parents loved me just the same. They always told me that being different made me inter
esting. Maybe that’s why it didn’t occur to me to feel sorry for myself, or even to focus on the mirror. I have always just felt like myself.
5. To Breathe
Two weeks after we got home, in mid-March, we went to Long Island for a weekend to visit Russel’s parents. They were renting an apartment while they built a retirement home in North Carolina. Russel’s brothers lived nearby with their families, and this would be the first time their children—who hadn’t been allowed in the NICU—were meeting Nathaniel. My mother-in-law made pot roast, her go-to family feast, and everyone took turns holding the baby.
He was already six weeks old, but otherwise it was almost a classic meet-the-newborn family weekend. Or it would have been except that over the course of a day—one day!—Nathaniel’s breathing changed. He was sleeping next to me in a portable crib, and at one in the morning I woke up to hear him making a terrible snoring noise. Looking over, I saw that his chest was rising and falling too heavily. He was gasping for breath. I shook Russel awake.
“Something’s not right.”
We turned on the light. Nathaniel was turning blue. Russel called Dr. Bernstein, the ENT who had opened his nose. Dr. Bern-stein was everything you want in a doctor: knowledgeable and gentle. And Russel had his home phone number. Of course he did. Wherever we went, Russel made friends. I’ve seen people treat nurses like servants, but Russel is always appreciative, and he always wants to know a little bit about everyone. He’ll say, “Hey, what’s your story? How is your life? Is there anything I can do for you? I’m going down to the cafeteria. Can I get you a cup of coffee?” Doctors, nurses, taxi drivers—Russel connects with everyone, and in Nathaniel’s medicalized world, from the very beginning, it made everything more personal.
“This doesn’t sound good,” the doctor said. “You need to come to the hospital as soon as possible.”
Dr. Bernstein surmised that his tongue had grown but his jaw hadn’t, which was making it difficult for him to get enough air. He told us to keep him face down as we drove so his tongue would fall away from his throat.
It was at least an hour from my in-laws’ house to the hospital. Russel drove, and I sat in the back with Nathaniel between my legs, his head facing the floor between my knees. So much for using a car seat; breathing takes priority over being buckled up for safety.
Russel drove as fast as he could on the icy roads, and we were lucky it was the middle of the night because at one point he lost control and we started spinning in circles in the middle of the highway. I was screaming. Russel was screaming. Dr. Bernstein, still on the phone, must have thought Long Island was going down in flames. When we skidded to a stop, there was a moment of silence, then we heard him say, “How’s it going there, guys?”
An army of doctors met us in the ER. Nathaniel was given an emergency tracheotomy.
How was it that two weeks after bringing him home, there we were, back in the hospital with a baby who couldn’t breathe? Why had they sent us home with a baby who could risk suffocating? I later found out that if Nathaniel had stayed in the hospital for thirty-one consecutive days after his birth, he would have qualified for Medicaid. That meant that whatever our insurance didn’t cover would have been paid for. Hospitals try to avoid that, so we were sent home after 28 days, possibly too early, and every problem that followed was an insurance nightmare.
Dr. Bernstein had anticipated the natural growth of Nathaniel’s tongue, but that was not the only complication. In his second surgery, when they had drilled a hole through the bone behind his nose, they placed a plastic stent in the hole to keep it open while he grew. To keep the airway clear, he needed to be suctioned through one of his nostrils whenever he started breathing heavily and through his mouth.
One day as I was nodding off in the chair next to Nathaniel’s bassinet, I heard him crying and lifted my head to see my least-favorite nurse roughly shoving the suction into his nose. He let out a wail of pain. When she left I picked him up to comfort him and was horrified to see the stent hanging down in the back of his mouth. I called for a doctor, who examined Nathaniel. The nurse had pushed the suction in too recklessly; the stent poked through his palate.
The damage was done. The doctor explained that they would not be able to replace the stent for fear of further damaging his palate. They had removed it, hoping the airway would stay open on its own, but it was unlikely, and we knew that there was probably going to be a tracheotomy in his future. I’ll always wonder what might have happened if we’d saved that working nose; would he have been able to avoid the tracheotomy?
After we left the hospital, the bone had grown more quickly than anyone expected, closing the medically created airway. We could have lost him that night.
The tracheotomy was not just a temporary emergency fix. The doctors inserted a tube that went from a hole in Nathaniel’s neck (called the stoma) directly to his windpipe. Where the tube came out of the stoma there was a neck plate, which attached to a cotton neck strap called a trach tie that held the contraption in place. The g-tube he would outgrow someday, but the only way he would be able to get rid of the tracheostomy would be to have surgery to open the bone behind his nose. That bone, which had been soft and easy to open when he was a newborn, would harden and thicken and cause us no end of trouble.
When Nathaniel woke up from surgery his ability to make a sound was gone. The air that he exhaled was going out through the trach instead of through his voice box. Until he was big and strong enough to use a special valve for the trach, he would be silent. The only way I could tell when he was crying was that his mouth would be wide open, his face turning purple. A screaming baby with no voice. It was anguishing. My in-laws showed up at the hospital the next day. We all cried over Nathaniel, his tiny body now doubly medicalized. It was hard to swallow, no pun intended. With the g-tube and now the trach, he seemed even further from ever becoming a healthy, carefree kid. When I dreamed of “normal,” I was dreaming of freedom from constantly fearing for his life.
This time, our discharge from the hospital involved confirmation that we knew how to keep the trach clean, suction it, and attach an ambu bag to it. (An ambu bag is a bag/mask that we used to force-feed air into Nathaniel’s lungs in an emergency.)
When we left, I was able to cherish a brief moment of normalcy—the hospital staff clapping and taking pictures—but leaving came with the terrifying realization that there would be no doctor on duty. Our baby was back home, but we couldn’t hear him cry. And if something went wrong, we were the ones who would have to figure it out. We were it.
The trach was a cruel savior. My new full-time job was keeping it clean and sterile. Everything that ordinarily runs down our throats, gets coughed up, or comes out our noses needed to be suctioned out of it. This involved attaching a skinny tube (a catheter) to a portable suction machine, then inserting the catheter down the trach into his lung. Sometimes I would hit the lung and see his silent, heartbreaking cry. I soon learned exactly how far to go. It was hard for him to breathe well while he was being suctioned, so I had to complete the task in five to ten seconds. When I pulled the catheter out, I held the neck plate in place so that the trach tube wouldn’t come out with it. Day and night, I monitored his breath. When I heard it catch roughly, I suctioned him. Soon I could practically do it in my sleep (if you can call what I did sleeping): Roll over in bed. Check Nathaniel’s breathing. Put on gloves. Suction. Sterilize the machine. Dispose of the catheter.
Here was a doozy: no water could get in the trach. None. Nathaniel loved his little blue bathtub that went on top of the sink, but he couldn’t get wet from the neck up. He had cradle cap—I had to wash his head! I used a damp soft washcloth with a tiny bit of baby soap, but if water found its way around the trach tie and into his lungs, just like that, he could drown. I kept the suction machine next to the bathtub, grateful that at least it was battery operated and I didn’t have to worry about electrocuting my baby on top of everything else.
The trach was pretty much an open wound so
it was prone to infections. Or, rather, it invited infections and they flocked to it like ants to a sugar cube. The whole contraption had to be replaced frequently to limit the growth of bacteria, so every two weeks I took Nathaniel on the subway to the NYU Medical Center. Now, negotiating the subway steps with a stroller is a point of pride for New York moms, but I was too freaked out and nervous to applaud myself for adding the portable feeding pump, a suctioning pump, a bag full of formula, extra IV bags, sterile gloves, and one-use catheters in addition to a diaper bag. My “diaper bag” made me look like a medical supply salesperson.
To the hospital-room-chic décor we were cultivating at home, we added a huge, loud, vibrating oxygen machine with a humidifier that could be connected to Nathaniel’s trach by a large hose. I also ordered shipments of gloves, vinegar for sterilizing, saline drops, peroxide, hundreds of catheters, an air compressor, a nebulizer bottle, aerosol tubing, a trach mask, sterile water, and saline ampules. It was a daunting amount of supplies that would go from overwhelming and incomprehensible to familiar in mere days. I entered monthly ordering reminders into my calendar: 2 trachs, 50 suction catheters, 30 t-vents.
Amid all this nursing and worry, there were tender moments. I watched Russel lie down on a couch with Nathaniel on his chest. They slept that way, a deep, peaceful sleep, for half an hour. For half an hour, life was normal. But for the most part during those first thirty days, or the first few months, or the first full year, it was difficult to completely enjoy the best moments because they were immediately preceded or followed by a complication, one more issue to overcome. When new parents ask Russel for advice, he always says, “Cherish every good moment because forty-five seconds later it’s going to be gone, and the memory is all that will get you through.” He’s not talking about a first step, or saying “mama” for the first time. We didn’t even have the wherewithal to anticipate those milestones. Russel means the moments when you can take a deep breath and savor the absence of worry.
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