In twenty-three years, we have experienced moments of joy and of relief. Likewise, we’ve known the terror that accompanied the dehydration and surgeries and the tumor on her skull. But sometimes there’s a quieter fear, a dread like a prickle on the scalp, often signaled by a beep in the night…

This past Thursday, Gabriella had been crabby. Nothing we did soothed her for long, and we were glad to get her into bed in the evening. When we attached her pulse oximeter to her toe, however, her heart rate was elevated. Then she had a seizure.

Gabriella has been experiencing seizures for years, but this one drove her heart rate to the highest level I can ever remember, nearly 170 (although not all of them come at night when we have the pulse oximeter attached). When she came out of it, Lisa took her temperature: no fever. But the pulse ox continued to beep, bringing that worry I’ve often known.

I have an ambivalent relationship with that device, with its white plastic wire and its digital display. It brings back awful memories of sleeping in hospital rooms during prolonged stays.

Even today, we use a baby monitor to track our daughter’s progress through the night. We hear the pulse ox beep when her oxygen dips below 90%, or when her heart rate exceeds 125 or goes under 50, which thankfully, is seldom. The sound it makes when alerted is insidious…beep-be-beep beep beep, beep-be-beep beep beep.

During the early years, it was unnerving to wake up to that clarion. I’d leap out of bed, hurry downstairs, wondering if my pulse was going as fast as hers. Upon reaching her room, the first thing I would do was to push the button to suppress the sound for the next two minutes. Sometimes the beeping was alerting us to something of concern. Just as frequently, it seemed, the small ring around her toe (it looks like an old-fashioned Band-Aid) has come loose or the connection skipped a beat. And when she sleeps, Gabriella’s heart rate often goes below 50. As a result, several times a week, I reset the lower limit to 45 to restore silence.

It can be easy to become complacent, and more so when you want it to be a mechanical failure or an excess of calm. But sometimes, it’s not so.

On Friday morning, her skin became warm. With her fever, she grew lethargic. We attached the pulse ox during the day, which was unusual, and found her heart rate peaking at over 150. The nurse listened to her lungs and said she thought they sounded junky. But if she was congested, why was her oxygen level so strong?

Lisa consulted Gabriella’s doctor and got a prescription for an antibiotic, plus we gave her Tylenol. I sat alongside the pulse oximeter, poking my thumb at the button every time it sounded, trying to get it before the first beep bloomed into that horrid sequence.

We alternated being on-call for two-hour increments. That night was stable, but I awoke at 7 a.m. to the beep-be-beep beep beep-ing. My first thought was that her heart rate had fallen once more under 50. But when I pressed my thumb to silence the pulse ox, I found that her oxygen level had dropped to 89, then 88. Most mornings, the beeping is enough to wake her, but she slept on. Her forehead was warm again, so I put a Tylenol caplet in a syringe with water to dilute it for delivery through her G-tube.

I waited in the shadows, leaning over to push the button every two minutes. The numbers became depressed: 86, 85, 83, 80, and down into the 70s. This was during my shift and I wanted to let Lisa catch up on rest, so I tried rewrapping the toe-ring and got immediate gratification, with the oxygen level soaring to 94. But it soon slipped back into the 80s and then to 75. I flipped her to her other side, but that didn’t help either.

I wondered if I would need to haul out the oxygen concentrator, a rolling piece of equipment that has always intimidated me, and not least because its use often heralds a trip to the hospital. But with first light, things normalized.

As the day progressed, we held our breath and wondered. Whether the fever would persist. Whether she would suffer more seizures. And whether more beeping in the night would bring another round of dread.

Saturday was much like Friday. In no particular order, Gabriella spiked a fever, we administered Tylenol and the antibiotic, she cooled down, she got an extra breathing treatment, her heart rate normalized. By bedtime, she seemed better.

Again, we traded off that night. When I woke for my shift, I heard a great rumbling. Gabriella’s oxygen had fallen and, after trying chest PT and flipping her from side to side, Lisa had set up the O² concentrator. The growling-wheezing sound brought a new round of anxiety, but even that didn’t drown out the beeping.

Sunday was a lot like the prior two days. With three doses of the antibiotic down, Gabriella seemed to be better by bedtime, then things slipped again. This time we didn’t hesitate long before setting up the concentrator, facing another night of lousy, interrupted sleep. By Monday morning, she was cheerful, trying to encourage us despite a low-grade fever.

Once more the day held new promise. And yet I know that when darkness falls, I will feel that familiar dread, my subconscious mind alert. Awaiting those things that go beep in the night.

Gabriella was up early on Saturday morning.

She announced herself with a soft moaning we call “creaking”, sounding in waves through the baby monitor we use to follow her progress during the night. Like the Christmas singing of the Whos, it started in low and then it started to grow.

I laid in bed, holding my breath, as if she could hear me upstairs. Sometimes, when it’s still dark outside, she’ll drift back to sleep, but the faint light and her persistent creaking convinced me she was beyond that. So I got up.

For the past couple years, Saturday has been my morning. That means I get her ready and give Lisa the chance to sleep in. (When I retired, Fridays became “her day”.) This week, Gabriella woke up some time before 7 a.m.

That only meant a little earlier than I had planned, but it made me think about sleep through the years. Gabriella’s sleep, and ours.

Like many newborns, she had trouble sleeping. When we put her down for the night, she would cry and complain until we lifted her from the crib, sat in the glider, and rocked her. This would go on for hours. We tried having her “cry it out”, but she always outlasted us. When she awoke after midnight, as she did often, it would take another couple hours to make her comfortable again.

I remember walking around her bedroom, rocking her and whistling the same medleys of tunes and whispering chuh-chuh-chuh, chuh-chuh-chuh, chuh-chuh-chuh. Time melted away, and I grew to hate the clock. In the darkness, in the spoiled silence, I aired my grievances with God. At last, bleary-eyed and dreading the alarm that would wake me for work in a few hours, I stumbled back to bed. Some nights, despite knowing it was there, despite stepping gingerly around it, my slippered foot would find that floorboard. You know, the one so many houses have. It wasn’t loud, but in the stillness it was enough.

And the whole thing would begin again.

Over the years, things got better. We moved to a house without a bias for sabotage. After experiencing increasing challenges in getting her upstairs, we relocated Gabriella’s bedroom to the ground floor. We swapped her princess bed – a beautiful sleigh-back model in light wood that I thought I could never bear to see go, as if losing it meant sacrificing her childhood – for the handsomest hospital bed we could find. Perhaps that’s why I’ve always cherished her bedtime routine of stories, prayers and songs.

With her downstairs, we became more inclined to let the middle-of-the-night awakenings play themselves out without our intervention, and more often they did. It also meant a more frenzied scramble when the pulse ox monitor went off and didn’t stop, signaling a seizure.

Gabriella’s routines have never been like those of other kids. Her brother Alexander used to fall asleep on car rides of an hour or more, especially at night, but we cannot remember a single moment of driving-sleep in our daughter’s 23 years. (As I mentioned before, though, she goes right out for eight straight hours on the AutoTrain on the way to Florida, while I jerk and start each time it tilts around a turn, and Lisa can’t drop off at all.)

Even stranger, unlike most kids who experience seizures, Gabriella doesn’t get drowsy. And when we give her a medicine like valium family in response, she becomes an insomniac. Many times, this means she is awake until daybreak, and with the chance of a recurrence higher as a result, one of us (most often Lisa, sometimes me and her in rotation) will spend the night on the sofa downstairs, hopping up with any persistent beeping.

For many years, I got only 5 to 6 hours of sleep per night, before rising at 4:30 a.m. to get the train into Manhattan. Perhaps the greatest blessing of my new life has been more regular rest. And I no longer mind if there are a couple interruptions. Sometimes the culprit is our cat Luna, informing me with a gentle headbutt that we had forgotten to refill her bowl. So I creep downstairs, and after replenishing her food I peek in on Gabriella.

Most times I find her sleeping with a smile soft on her lips.

Third of three parts

With the tumor removed, Gabriella began the healing process. Lisa and I held a vigil at her cribside. In the lounge, they offered chairs that folded out to beds. We took turns clutching at sleep, more me even though my wife was pregnant with Alexander. I pulled my knees to my chest in an exaggerated fetal position so my calves wouldn’t hang off the end. Terror touched sparks off exhaustion in the hollows of night.

It was all too much.

Again we faced an exercise in waiting. My imagination painted all sorts of dour scenarios, radiation treatment and chemo and worse. Much worse.

During rounds one morning, the mesh helmet came off. Her hairless head, the scar circling her scalp, her exaggerated hazel eyes – all of it summoned a pity too powerful for tears.

“What are we going to do?” my wife said for the dozenth time.

“I have no idea,” I confessed in the dim early light. “I’m out of hope.”

“You can’t be out of hope,” she said. “You have to keep hoping for all of us. For her.”

I knew I was the optimist in the family. I said I would try.

Soon enough we got to take her home again. The routine was familiar: the packing up of tiny clothes and hospital blankets the nurses insisted we bring with us. (I fixated on whether it was right to keep these things.) When I picked up her pink snowsuit, I remembered a moment on the day of the diagnosis when I walked in on Lisa’s mother, clutching that same snowsuit to her chest and dancing a mournful waltz, struggling for breath and understanding.

When we arrived home and I carried her into her bedroom, lifting her onto her changing table with the smile widening on her stricken face and our family around us laughing and pointing and me shivering with a hesitant joy, I wondered how much more we would all have to do the same. And I realized that I would do it however many times I had to, to keep her safe.

And then, once more, we waited. Waited for the phone to ring, for the sign that the doctors had an answer. For the results, preliminary or final, of the pathology report, from our hospital or from Chicago. Waited for anything to chip away at the horror of the frozen section.

We had waited so often before, but this was different. I could think of little else. Days passed. Lisa called their offices, first one neurologist and then the other, the plastic surgeon and the oncologist. Nothing yet. By now they should have heard something. Our minds invented explanations, mostly that they didn’t want to break it to us until Chicago confirmed the bad news.

One day, Lisa called and they told her to hold on. The plastic surgeon was coming to speak with her himself. Absently I put Gabriella down on her playmat. The darkness filled me again. I watched my wife’s face, expectant but with a sickly expression, then clearing, almost blank. Was it good or bad? She hung up.

In a dazed voice, she told me. The doctor was reluctant to get our hopes up until we got the final report from Pathology and the second opinion from Chicago, but it seemed as if the frozen section was wrong. So why did she look so pale? “He was surprised his staff didn’t tell us the last time we called,” she said.

“That was two days ago,” I said.

“He didn’t seem too phased by that.”

Anyway, it looked as if the tumor might be an angioma, a benign growth.

We could have been angry at that point, outraged even, at having been denied the answer for days that we had been desperate for, and we wonder why they hadn’t bothered to call us when they found out. “Wouldn’t they think we’d want to know that?” I asked.

Then jubilation sang through the house. I grabbed Gabriella under her arms and swung her around in merry circles, my daughter giggling with the rush.

“Be careful,” Lisa said, laughing through tears. “She just had surgery.”

A week later, Chicago seconded the opinion that the tumor was benign, although they called it cranial fasciitis. It seemed an appropriate name for the creeping monster that had cost Gabriella a piece of her skull, but in the end I didn’t care what kind of benign-tumor label they gave it.

I’ve posted a lot about the more traumatic hospital experiences of Gabriella’s first two years. But not every trip to a medical facility is for removing cataracts or for clubfoot surgery or, as I described last time, for excising a bump that came back on the frozen section as cancerous. This week I had planned on completing that story, but after our weekend, it will have to wait.

Today I’m writing about patience instead.

Gabriella’s deteriorating oxygenation started on Thursday. Each night when we get her ready for bed, we attach a pulse oximeter to her toe, which enables us to track her heart rate and her oxygen level as she sleeps. With a baby monitor, we often hear beeps through the night; most of them mean nothing, but many require going downstairs to her bedroom to check. So it was that night.

Patience.

A concern about aspiration led us to monitor her breathing more closely. As we feared, her O₂ rate hovered around 90, so we set up the oxygen concentrator to get her what she needed. This large gray box shrieks when it’s turned on, then settles into a dispiriting hum, and as a result one of us needs to stay close by. Because Gabriella wasn’t laboring as much as she sometimes has, we arranged it to blow air from nearby rather than using a mask or a nasal cannula. Every time the pulse ox sounds more than once or twice, we had to make sure the sensor had not become dislodged, to shift her bodily position to improve the flow to her lungs, to move the tubing an inch in either direction to better direct the blow-by. This happened many, many times that night.

More patience.

On Friday her oxygenation was better, but we gave her extra respiratory treatments every four hours. Nevertheless, at around midnight she wound up back on the blow-by. That meant more sitting up, monitoring beeps, interrupted sleep.

I have never been a patient person. But I try.

By Saturday morning, we knew we had to do something. This situation wasn’t as threatening as a growing bump on our daughter’s skull, but it held its own insidious risks, so Lisa wanted a chest X-ray. To avoid the emergency room, we tried a nearby clinic; if the scan showed anything of concern, we could still take her to the ER. But the staff at the clinic worried about being able to X-ray her while she was lying down, and said that even if they could, it was unlikely they could get a reading before Tuesday. So off we went to the hospital.

It was a bright new day, and I felt optimistic: maybe we wouldn’t be there for too long…

By the time I dropped them off and parked the car, Gabriella was checked in. Just like the nurse at the clinic, the staff here expressed relief when Lisa handed them the medical history. They agreed we needed a chest X-ray, plus bloodwork and a urinalysis. They proposed an intravenous drip for antibiotics, and the nurse succeeded on his first try – it often takes blowing multiple veins before one holds – so we held Gabriella’s hand for hours to protect that IV, that vein.

Hospital stays have always been a challenge for my inborn impatience. We know the RNs and interns and techs and orderlies are doing their best, but it seems like we’re waiting most of the time. Waiting to see a doctor or nurse. Waiting for transport for a test or an X-ray. Waiting for a result. And most of all, waiting for discharge.

When we’re admitted after surgery, we expect a long stay. On visits like this one, when we were pretty sure even before we arrived that she had congestion (and likely an infection) in the upper airway and not much else, when our primary goal was a confirming X-ray and antibiotics…that’s when the tedium is awful. The cramped space in the ER, the sounds of rolling gurneys and beeping monitors, the pitiable sight of sick people and worried loved ones – all of it becomes oppressive. But we do what we must. We wait. And we wait.

And then suddenly it’s time to go and the nurse is unhooking the IV tube and we’re locating one last diaper for a change and receiving discharge papers and a prescription and we’re using a two-man lift to hoist Gabriella back into her chair and we’re wishing everyone a happy end to their holiday weekend and we’re off to the pharmacy downstairs with 20 minutes to spare before they close and I’m navigating the construction throughout the hospital to get to the parking garage to get the van and I’m pulling around to pick up Gabriella and Lisa and we’re putting seven inert hours behind us and heading for home.