The feeling lurks within like a sleeping beast. It’s not so much a spike of fear as a lingering dread, ready to be roused at any moment. By a phone call, a blurring over the eyes, a bump on the scalp. Or a retching cough.

We had settled into a routine. Those first few years – the dehydration, the cataract and clubfoot surgeries, the cancer scare – had indoctrinated us into a life of constant anxiety. A decade later, our daughter’s spinal fusion surgery had exploded any sense of normalcy. Now came the reign of tedium.

Lisa bore most of the burden, the hurry-up-and-wait activities of doctor visits and lab tests and billing questions. I worked. Gabriella went with delight to Lakeview School, and we tried not to dwell on the pace of her development. Or on the fact that her IEPs (the educational plans documenting her goals and her progress), hardly changed from year to year. Her health was stable, our primary concern.

But there were worrying signs.

For one, in September 2005 she weighed 57 pounds. Her height was already in the fifth percentile for eleven-year-olds, and her scoliosis surgery that month effectively stunted any further growth. The awful complications following that procedure weakened her and over the ensuing year, she dropped ten more pounds. The low point for me was looking at a photograph taken on the beach with her brother and cousins, finding that her arms and legs looked skeletal. It took another twenty-four months for her to regain what she had lost since the operation. After that, she plateaued between 55 and 60 for two more years.

One reason was that Gabriella remained a picky eater. I had reasonable luck in feeding her on the weekends, but it was still a struggle to get down a couple jars of baby food and a dish of applesauce. Before the scoliosis procedure she had begun using a customized curved spoon, laboring to control it to her mouth and needing lots of help, but finding pleasure in the act itself. She also toyed with drinking thickened juice from a cup, lifting the two-handled vessel to sip; this was important because she drank little water except when squirted between her lips with a syringe. But these burgeoning skills were among the things she lost when they straightened her back, never to return. We resumed holding the spoon ourselves.

She ate pureed food, and Lisa put meat or vegetables in the blender to vary her flavors, but sometimes she would choke, unable to process anything but the bland mush in the Gerber and Beechnut jars. Too much coughing interrupted a meal and often signaled its end. We heard similar frustrations from her teachers and speech therapists at school.

The coughs weren’t limited to mealtime. Our daughter became prone to respiratory infections, often succumbing around her birthday in late November. More than once, we spent Thanksgiving at home, trying to get her fever down, to ease her discomfort, to keep her from gagging herself into vomiting. She contracted bronchitis a few times, and pneumonia several more, always in her undersized right lung.

The confluence of these symptoms – her flatlined weight, her limited water intake, her frequent coughing and her respiratory setbacks – worried Lisa. It was a busy time at my job, and she took our daughter to nearly all of her pediatric specialist appointments by herself. Perhaps because I tried to stay optimistic, I rejected the idea of more comprehensive problems. But even within me, the dread began to stir.

What I never suspected was that this would soon become the second most stressful and medically-involved period of our daughter’s young life.

To be continued…

In 2005, Gabriella faced surgery again. We had prepared our daughter for operations before, but not for six years. Now her scoliosis developed to where we had to act at once.

The curvature of her spine caused her increasing discomfort, so we knew this was coming. But her orthopedic surgeon, a doctor we respected, made it an easy decision. He told us if we waited any longer, he would have to do two procedures instead of one. The first would involve an entering through her back … with a second a few days later with an incision in her abdomen.

Gabriella experienced the OR ten times by her fourth birthday. In the years since her last cranial surgery, we had grown into more routine, more normalcy. But we summoned the fortitude that had lain dormant. That morning in late September, we found ourselves once more in the waiting room.

We had risen early, gotten our daughter ready, and driven to Robert Wood Johnson Hospital. As usual, Lisa got her admitted while I parked the car in the underground garage. After her doctor greeted us, we met the anesthesiologist. General anesthesia was always nerve-wracking, but we became comfortable with the surgical team. But we also knew this would be a big one.

Gabriella had already had three operations on her skull to remove a recurrent tumor, but spinal fusion was a complex procedure. The orthopedic surgeon warned it would take as long as six hours.

They let one parent escort her into the operating room. While it was daunting to deliver my child into this environment, I felt she appreciated my presence while still conscious. After they got me outfitted in scrubs and a mask of my own, I held her hand as we walked down the hall and then in the OR. Often, I whistled to keep her calm until they administered the anesthesia. But this time seemed different.

First, there was a larger team already gathered than in all of her earlier surgeries, doctors and nurses bustling about getting ready. The crowd was intimidating, but not so much as the array of tools and equipment, screws and rods and implements for cutting. I emerged from this sobering scene in a haze.

Lisa and I waited with reading material, but were unable to concentrate for long. And it was a busy waiting room, with other patients’ family members coming and going. By the time an hour passed, we thought we had been there three. Whenever the door opened, we looked up, anxious to see the surgeon still wearing his scrubs. We glanced at each other as frequently as the newspapers or books in our laps.

At last, our doctor came in. He gestured to a quiet corner. We rose and followed, fearful, and sat across from him. I gripped Lisa’s hand in mine. He said she had done well, although they had transfused a lot of blood. I donated in advance, and was relieved I had been able to do something to help.

“Can we see her?”

He nodded and led down an endless hallway to the recovery area. We passed curtained sections until we reached our daughter. She lay on a gurney in her hospital gown. Her face was so swollen, we barely recognized our own child. Despite this jarring vision, they assured us she was doing well. Until her oxygen level began to fall.

After a chest x-ray, they explained that there were post-surgical complications. Gabriella suffered a collapsed lung. They took her to Intensive Care, unconscious and with a breathing tube.

We fought off tears. She had been through so much, and she was bigger than all those earlier stays, but this seemed far worse. We held her hands and stroked her hair; we whispered that Mommy and Daddy were here now. But she didn’t respond.

Thus began a frightening stay in the ICU. Her grandparents brought Alexander to visit his sister, although we gave him limited exposure because we didn’t want him to be scared off by her appearance. As night approached, we considered our options.

During all of her prior hospitalizations, we had traded off. Lisa stayed the first night, while I went home to sleep, then after a quick shower in the morning I returned. Then we’d switch places for the next overnight. But this was different, and the nursing staff in Intensive Care allowed us both to stay.

These nurses and aides were phenomenal during Gabriella’s stay, and the orthopedic surgeon was gentle and compassionate. Throughout it all, we always felt like she was in good hands.

Our daughter was out cold for two full days while intubated. After they removed the breathing tube, it took another day for her to come out of it.

Because of the congestion in her lungs, they needed to do regular chest PT. This involved striking a cupped hand or a plastic cup like a mask against her back and front and side. Gabriella never liked this, often showing us the pout she made when her feelings were hurt. Now it became heartbreaking to watch, since they did chest PT through her heavy bandages.

As she recovered, family and friends came to visit. One friend was the mom of a fellow student of Gabriella’s at school. She had shared the difficulties of her own daughter’s scoliosis surgery and we appreciated her reassurances.

After five days in Intensive Care, she moved to a hospital room. The swelling on her face receded. Another forty-eight hours, and we brought her home. She arrived to find a tangle of balloons and flowers, and a Build-a-Bear from her friends at Lakeview.

It was then that her recovery accelerated. Within another week, we put the terrifying ordeal of her worst-ever surgery behind all of us. We welcomed the return of our routines, with just a bit more appreciation for our own unique version of “normal”.

Our daughter had always suffered from a curvature in her mid-back, but as she grew her scoliosis affected her whole spine, from her neck to her hips.

Six years had passed since the rash of surgeries on her eyes and her foot and her skull. The early crises had tested us but left us stronger. Gabriella now enjoyed attending Lakeview School. Her brother Alexander, long a favorite in the hallways, started Kindergarten. We accepted her limitations and embraced his possibilities. And we allowed ourselves to accept a sense of normalcy.

Even if she was increasingly cranky.

Gabriella often complained, but now it was continuous. Suffering from precocious puberty, her emotions became volatile. We lost our patience at times, until guilt set in. Then we’d baby her. She developed a pout, sticking out her lower lip whenever her feelings got hurt, and if we laughed, she would sob until we begged for forgiveness. But beneath the tragicomedy of the pout, something more insidious was at work.

Her body slumped because of her low muscle tone and we wondered if that caused her discomfort. Finally, her physical therapist at school suggested we have her tested for scoliosis.

Lisa brought her to the orthopedist for an evaluation. We had known this doctor since the week of Gabriella’s birth, and while we resented his early response to my question whether our daughter would ever walk (“some kids are just good sitters”), we had grown to like and respect him. He guided us through the challenges with her feet, casting them and operating on them. Now he monitored her ongoing progress with her AFOs, plastic braces she wore to keep her aligned from her knee to her toes.

The orthopedist ordered X-rays, but the prognosis was clear. Gabriella had scoliosis, and it was likely to get worse.

With trepidation, we watched the shape of our daughter’s back become more twisted. As had increasingly been the case, Lisa bore the brunt of the doctor appointments, and one evening I got home from work and she told me Gabriella needed a scoliosis brace. Similar to the AFOs, this orthotic device was like a chest-plate of medieval armor, only made of a hard plastic and molded to fit her torso. It was snug to her armpits and reached from her upper vertebrae to her hips, and we secured it with strips of Velcro that stretched across her ribs.

The purpose of the scoli brace was neither to reverse her curvature nor even to stop its progress, but only to slow its inexorable worsening. We knew what that meant.

More surgery.

We learned about spinal fusion, the procedure she would need. The titanium rod that would be inserted against her spine would correct her scoliosis, but it would also limit future growth. As a result, the orthopedist hoped to put off surgery as long as possible.

In the meantime, Gabriella expressed her displeasure when we fitted her into her new plastic turtle-shell whenever we got her out of bed. The brace made her a little harder to lift and fit into her adapted stroller. It took a while, but she became used to it and her complaining lessened. But her discomfort lingered.

Time passed. As with the AFOs for her feet, with growth we replaced the scoliosis brace with a larger version refitted to her changing back. The orthopedist raised the prospect of spinal surgery during regular visits. While the shadow loomed, we seemed able to delay it, at least for now.

At last, Lisa asked me to join her for her next appointment. He sat with his hands folded, his voice calm, and told us we had to act. If we waited much longer, one surgery would become two. First, they would enter through her back to do the normal spinal fusion, but within days they would do another, cutting through the front. I remember a fog seeping into my brain. After six years free of surgical prep and ORs and waiting rooms and general anesthesia, we faced the most invasive operation of our daughter’s life. Gabriella was older, too, and I pictured her pouting and crying. But delaying it any further would necessitate a second procedure, otherwise unnecessary.

We chose the obvious option. And we prepared ourselves once more for surgery.

To be continued…