We were in the midst of the most frenetic year our family had experienced since Gabriella was three.

This time we didn’t have frequent surgeries, each with weeks of anxiety beforehand, a sleepless night before, the drive to the hospital, a stay in the waiting room, new post-op routines…and then the slow build-up to the next operation on her skull or eyes or foot. Those operations were awful, but they were finite and they targeted well-defined problems. This time was different. This time none of us knew what was going on.

We had often watched the TV series House, where a cantankerous doctor solved medical mysteries that combined unusual symptoms and diseases. With her background in healthcare, Lisa guessed some diagnoses mid-show. To me, the series seemed dramatic and even far-fetched. Yet now we experienced something eerily similar.

After months of our daughter coughing through meals, and after multiple cases of pneumonia, her gastroenterologist had prescribed consults with an allergist and a pulmonologist. The latter intensified her daily respiratory treatments and other routines. The situation worsened, and in early October Gabriella stayed home from school with congestion and poor digestion. The pediatric specialists suggested a combination of factors, but it still stunned us when they discovered she had kidney stones, one of which was too large to pass.

The situation had become urgent.

Two days later, my wife got Gabriella in to see a nephrologist. (This was another specialty I barely understood, although I should have assumed there would be doctors focused on the kidneys.) She reiterated that the large stone caused no blockage, so far, but told Lisa they needed to do a work-up to consider the causes.

It turned out that our daughter was prone to several risk factors. First, she was non-ambulatory, being confined to a wheelchair. Second, she got a limited amount of water each day, however much we were able to squirt down her throat at odd moments through a syringe. Last, one of her two epilepsy medicines was a known cause; that raised a separate concern because it had taken time and tinkering to control her seizures.

The nephrologist prescribed a new pill and told us to weigh each diaper to ensure she was making enough water. The care routines multiplied.

The second doctor visit that day was with a urologist. He determined that the larger stone occupied a spot where it could cause future obstruction. One remedy was surgical, scoping through the incision from her scoliosis surgery and through to the kidney to remove it, but her thin bones and the shape of her hips increased the likelihood of fractures. So he recommended lithotripsy, an hour-long treatment using ultrasound waves to shatter the stone. The resulting fragments could more easily be passed.

I grew nervous at the idea of shocking our daughter’s kidneys with ultrasound waves strong enough to destroy a large kidney stone. Would it cause other damage? But compared with the surgery, it seemed less invasive and less risky.

The following week, we went forward. The urologist felt the procedure went well, pulverizing the larger stone, although we would wait for the sand-like pieces to know for sure.

Now we searched each diaper (already heavier due to the water pills) for bits of shattered renal stone. A few days passed, but with no sign. Lisa confirmed that they didn’t always pass right away. But a week went by, then another. Nothing.

Back to the urologist. He said the lack of “sand” just meant the fragments remained in her kidneys, but they were smaller and unlikely to form a blockage. But then, upon examining the x-rays, he found new stones. He proposed giving it some time, then considering another lithotripsy, since she had tolerated the first one well.

A few months later, when the scan showed no change, he shattered the remaining kidney stones. Again Gabriella came through swimmingly. This time we found fragments in her diapers.

With additional medicine and better hydration, we now believed we could manage her renal issues. This was because, by now, things had come to a head on the biggest decision we had faced in many years, the feeding tube.

Next week: the Conclusion

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”.

Some events from Gabriella’s early life are as clear in our minds as summer storms – diagnoses portentous as thunder, lightning dashes to the emergency room, a driving fear like a downpour – but others are more vague. Her early seizures were a good example of the latter category.

At the beginning, we looked on with confusion. So much had happened in her first two-plus years, from her dehydration to the onset of cataracts to all those surgeries, and we were drained from living in terror. But this was different, and it brought a feeling more like dread.

All of a sudden, our daughter would stare upward with a frightened expression, chewing with her mouth empty, reaching out and patting the air as if she saw an invisible balloon. Other times, she would turn pale, swallow repeatedly, and make a harsh sound by grinding her teeth. These episodes would last a couple minutes, and we soon found it best to reassure her with a calm tone, and often to squeak certain of her toys that made a noise she enjoyed. We learned to hold the toy at a distance and to moderate the squeaking. Then she would come out of her trance, smiling.

When we first discussed whether these incidents could be seizures, I struggled. My preconceptions involved epileptic fits complete with shaking limbs and tongues protruding and eyes rolling back. How could these – quieter, calmer, less dramatic – be seizures?

But they were.

Gabriella’s neurologist, one of our favorite specialists, confirmed these were complex partial seizures. An MRI of her brain showed multiple EEG spikes. Worse, while her events were occasional, we heard about children having 20 a day! The key was to manage them, so the doctor prescribed Depakane, the first of many seizure medications.

This occurred at the same time a large tumor was growing on her skull and we were preparing for neurosurgery. As long as the seizure stopped within a few minutes, we repressed our anxiety and moved on to the next crisis.

But the fear was never far away. Not that we wanted her to experience the more violent form of epilepsy, but these events were so insidious I questioned that we even noticed them all. We were unsure whether our calming and squeaking caused her to “come back to us” so quickly. What if we missed a seizure and it didn’t stop?

Then one day, it didn’t.

After minutes of tooth-grinding and blanching and toy-squeaking, after we lost track of time in the haze of panic, Gabriella started to shudder and shake. When we realized we wouldn’t stop this one, we rushed her to the emergency room. I grew more unnerved with every red light.

The ER team used valium, and the seizure eased. But we now entered a new phase. Terror replaced dread in this aspect of her care as well.

This occurred a few weeks after the excision of her tumor. While the invading growth had been on the outside of her skull, I couldn’t help wondering if the procedure had somehow worsened Gabriella’s seizure disorder. We decided it hadn’t, but questions remained.

Our neurologist increased her daily dose of Depakane. Things normalized. Our daughter still suffered seizures, but they were sporadic and they lasted only a few minutes. We turned our focus back to her operations: removing the last vestiges of the tumor and implanting intraocular lenses.

Time passed. We let down our guard.

Then, more than a year later, after our longest stretch yet without seeing the inside of a hospital, it happened. Again, the seizure wouldn’t stop for all our cajoling and squeaking. Again, we rushed her to the ER. Again, they used a form of valium. But this time, there was more to it. Gabriella vomited a brown material like blood. But they stabilized her, and she recovered.

Our stay at Robert Wood Johnson lasted four nights. Lisa and I returned to the routine of alternating one sleeping at the hospital, the other home with Alexander. I went back to commuting into New York from the nearby train station. The pediatric nurses eased our nerves, and we reacquainted ourselves with the local takeout restaurants. There was something numbing about reassuming the haphazard lifestyle we thought we had left behind.

When it was over, the neurologist again adjusted her meds. She also gave us an emergency dose of Diastat, a valium-like drug, in case a seizure lasted beyond five minutes.

Unfortunately, we hadn’t yet gotten used to carrying the Diastat everywhere with us when the third emergency occurred a month later. We were celebrating my father’s birthday at their condo, and Lisa and I had run out for a while. When we returned, Gabriella was quietly having a seizure, and no one knew how long it had been going on. We were an hour from home and from Robert Wood Johnson, so we dashed to the nearest hospital.

I remember the disorientation walking into this strange facility, searching for Admittance and the ER. No one here knew us, or knew Gabriella’s history. Neither her neurologist nor her pediatrician had visiting rights. We concluded it would be best to have her transferred to our hospital, and off we went again.

I have wondered what she goes through when she experiences a seizure, what she’s pawing at, what causes her expression of fright. Most often, I picture a haziness, a lack of substance. Perhaps it’s like the fogging of my memory over some periods in her early life, the converging of all those subsequent times, most of them ending in a minute or two, but never without that dread. And then a wash of relief when she comes out of it, always with a smile, as if to reassure us, rather than the other way around.

To commemorate the six-month anniversary of our blog at Things My Daughter Taught Me, today I am sharing the story of Gabriella’s birth.

In the beginning, there was a prayer: please, God, don’t let people feel sorry for her.

They set her down and, as if made of jelly, she settled onto the table in the operating room. Maybe this was normal. Lisa had warned me not to expect the clean rosy baby that comes to moms on TV. Maybe when they cleaned her up, then she would look more like the videos I had seen at Lamaze, or the infant children of friends and relatives.

This was my daughter, naked under the hot lamps, crying and gagging and contorting her features. This was my daughter.

I looked at her nose, bent as if pressed to the side by an invisible finger. I focused on her feet, still and swollen and mottled like sausages. Five toes – I counted without daring a breath – yes, five, her whole foot turned up until the scraps of toenail touched the calf, the other pointed down in a pirouette. Couldn’t she move it? Purple and pinched, she peered around in terror. My mind added a second intercession: please don’t let me feel sorry for her. I dreaded pity. I dreaded Lisa’s reaction.

***                              ***                              ***

My wife had tried to prepare me for months, but nothing prepared us for that day.

As a physician assistant, as an assistant professor at the medical school, she wanted me to be as ready as she was. We had always shared everything, so I was eager to go to Lamaze training. We did our pre-birth classes over a weekend in Princeton, which I considered fitting because I dreamed of my daughter attending the university (but only if that was her choice, of course). Our instructor taught us hee-hee breathing and how to recognize contractions, and showed us videos of births, both natural and cesarean.

Gabriella would be born by C-section. I felt oddly prepared that morning, if only because I knew the difference between a vaginal birth and a cesarean. It was a gift to know our daughter’s birthday in advance, midway between Lisa’s and mine and a full month before Christmas, long enough to prevent too many “combination-gifts”. Plus, having it predetermined meant not having to worry about a mad ninety-minute scramble home if my wife went into labor during a workday, praying the PATH wouldn’t get stuck on the way to Newark, hoping I would make my connection to the next Northeast Corridor train, fearing I might have trouble getting the car started or navigating the two miles from the station to the hospital in New Brunswick. It all seemed so fortuitous.

That morning arrived. I wolfed down frozen waffles, checked the mommy-bag, and called our parents to let them know we were on our way. Then we left, overcome with hope and quiet.

As the family optimist, I allowed myself a few fantasies. Waltzing with my daughter at her wedding. Snapping photos of her in her first communion dress. Playing with her as a toddling child, tiny now, walking with a bow-legged stumble, sitting in the new four-in-one stroller. I was giddy with anticipation. There comes a time when a person is ready to have children, and if God and nature cooperate, there’s harmony. On that morning, I knew such a sense of wonderment. I had no idea what to expect, but I’d heard the stories of sleepless nights and indescribable bonding, of worrying over money for a college career that wouldn’t begin for twenty years, of an absolute shift in priorities. I was sure it would be amazing.

My wife had similar expectations, but she has always had a more guarded view of life. We had gone to the hospital for an external version ten days earlier and the obstetrical nurse had given us a brochure on breach babies. Lisa noticed a footnote that said 2% or 3% of breach presentations indicate an underlying problem. If I had seen the note at all, I had dismissed it as statistically insignificant. 2% or 3%! Why worry?

We parked in the garage underneath the hospital and made our way to the second floor. My stomach churned, but not ten feet into Labor and Delivery, a nurse greeted us, the same nurse who had been there through the version.

“I was hoping I might have you guys,” she said. “Then when I came in today, I saw your name on the board.”

Lisa said we were glad to see her, too. We adopted her at once as our obstetrics nurse.

“You all recovered from the version?” she said.

That had been something, a dozen onlookers gathered around a birthing bed, doctors and residents and interns and med students (and me), watching a blonde physician use her powerful fingers to knead and twist Lisa’s middle, trying to coax the baby within to leave her upside-down position. Or rather, rightside-up. They had done an ultrasound to confirm she was still breach. Like a newborn kangaroo, Gabriella had spent the last twenty weeks riding head-up in her mommy’s belly. While the doctor worked, I held Lisa’s hand and tried to distract her. It seemed like good practice for a birthing partner, and it made me feel relevant in a room full of medical people. After several minutes, she gave up. Lisa’s obstetrician set Gabriella’s birthday on the calendar, unless she made an unlikely appearance beforehand.

***                              ***                              ***

So there we were, Lisa with an epidural and a modesty sheet, and me standing off to one side as if floating. I saw little beyond the green scrubs and the white sheets and the red numbers on the monitors, colors I would become used to in the years to come.

Muffled voices came from behind masks.

“She’s okay.”

“Everything looks fine.”

“Can’t…breathe.”

“One breath at a time, Lisa,”

“You’re doing fine.”

“Coming…here’s a leg. Got it.”

A leg? I thought that was the whole idea of doing a C-section, that they would get the head out first, before the chest, to make sure she didn’t swallow amniotic fluid before they got the rest of her out. That was what they had told us at Lamaze.

“Other leg. Good.”

I peeked down, skinny purplish legs, just like in the video at Lamaze. The familiarity calmed me. “They’ve got the legs,” I told Lisa. I prayed she wouldn’t ask me why feet-first.

“It’s a baby girl.”

We had known all along, but I swelled within. All those fantasies of weddings and graduations converged. We could do this.

“We’re going to take an arm.”

What about the head? I knew better than to alarm Lisa so remained quiet, sucking on my paper mask.

“This arm’s stuck.”

Stuck?

“Try the other one.”

“One arm’s out.”

“The other one’s still stuck.”

“Go for the head then.”

Yes, go for the head, her chest is out, don’t let her swallow. Please.

“Here we go. And the arm.”

They had her, pulling from under the arms, dripping with blood and fluids. “She’s all out, Li.”

***                              ***                              ***

“Is she okay?” I whispered. I gestured with my chin at my daughter on the table, at her feet, unmoving. I knew they’d say she’s fine, but I needed to hear it.

“Someone’s coming down to look at her,” our favorite obstetrics nurse said gently.

To look at her?

“Is she all right?” Lisa asked. My wife wanted to hear me say it.

I have always hated lying, but I said, “She’s fine.”

“Why isn’t she crying?”

I didn’t know how to respond. Our nurse jumped in. “Sometimes they don’t cry right away.” I could have hugged her.

On cue, Gabriella broke into a breathless sobbing. Eyes shut, I exhaled. Maybe she was crumpled, maybe she’d plump in the open air.

“Is she beautiful?” Lisa said.

Was she beautiful? Of course she was. How was I supposed to know? How could I not know? “She is beautiful.”

“Can I see her?”

“Breathe,” the OB/GYN said. Lisa had trusted him from the time she started seeing him.

“We’ll get her bundled up,” our nurse said. “Do what we have to do, then we’ll bring her to you.”

Please swaddle her with that striped blanket, I thought, my face hot. Warm her, crying now. Cover up those feet so Lisa won’t see them, not yet. (Nothing to do about the nose.)

“What’s her Apgar?” my wife asked.

At that moment, as at so many other times to come, I clung to and regretted her medical knowledge.

“We’re doing it right now.”

I looked at her again. Yes, I decided, she is beautiful. It was a fractious beauty. I discovered her greenhazel eyes, oversized replicas of my own – me, her new daddy with knees buckling – her long lashes, her bowlike lips, miniatures of Lisa’s.

She was ours.

***                              ***                              ***

5 and 8.

Those were her Apgar scores. I learned later that Apgar was an acronym, representing the vital signs they assess one minute after birth and then again after five minutes. Appearance, pulse, grimace, activity and respiration. Five was low, eight was more normal. I just knew something was wrong.

The same reality would pass over Lisa soon after, but I wanted to delay her pain if I couldn’t avert it altogether. My wife, even now being sewn up on the operating table, was a patient, ill-prepared for a shock.

“Stay with her,” she said from the gurney. “I’ll be fine, just stay with her.”

We left Lisa behind in Labor and Delivery, turned at the maternity nursing station, and proceeded past rooms with new mothers and wailing babies, balloons and flowers and grinning guests. The sight of graying grandparents filled me with fresh trepidation.

Our nurse pushed a carriage, a squared-off translucent bin on four long legs ending in wheels. Gabriella lay in the bin, wrapped in a blanket. I hurried along beside them.

We came at last to the nursery. Four or five babies lay swaddled in their trays, some black-haired, some bald. All slept, stirring within their cocoons. They were all like Gabriella in appearance, yet something was different. We entered. The RNs in the nursery unswaddled her, examined her, swabbed her around the blackened umbilical stump that looked like a cinnamon stick. For good luck, someone had told us, bury the stump of a boy under an oak tree, or of a girl under a rose bush. And could we use some good luck.

***                              ***                              ***

Later, I waited with our nurse and Gabriella, back in her bin. I can hardly remember the room, or whether we were alone.

“What should I tell Lisa?” I said. “She’s still a patient herself, right?”

“She did just have major surgery,” our nurse said. “And she’ll be in recovery for a little while.”

I watched the tiny bent-nosed face on the cart, peaceful in sleep. I couldn’t tell Lisa anything, at least not yet. How would I articulate this child’s infirmities? I had no language for the way she looked, or for the way I felt, and I feared her anesthetized mind would distort my words into nameless horrors. Or worse, into Latinate medical names or Anglo-Saxon nicknames. I remembered random words: cirrhosis and scurvy, myocardial infarction and whooping cough, tuberculosis and pinkeye. I would wait until she left recovery and got to her room.

“You want to hold her?” our nurse said.

Y-yes. I lifted her, swaddled now, all blanket and black-haired head. She gazed at me as if she knew me, my voice I guess, all those times calling her through Lisa’s swollen belly, Baaaaaaaaaaby, it’s Daaaaaaaaadeeeeeee! I kissed her cheek. I had never tasted anything softer.

I felt an awesome weight against my shoulder, six-pounds-two-and-one-half. Responsibility? Fear? Loneliness. It was a sensation I would feel in this baby’s presence until I got to know her. After that, I would never again know solitude.

“I love you, Gabriella,” I said to this lump snuggled to my chest, to the chilly air of that room, to nobody in particular and the world at large. Whatever else she was, this tiny person was my daughter.

I stood and held her, I sat and held her. I set her into the translucent bin, I picked her right up again.

There was a rocking chair, and I took it and pulled her to my shoulder. We rocked. Those nights of talking to Lisa’s belly seemed so far away, faced with this real baby. I didn’t know what to do, so I whistled. I don’t remember what, just the comfort of this tiny person propped against me, nestling into my chest. We rocked back and forth. I remembered a temp job from a college summer; I had been loading boxes in a warehouse and whistling when an older man told me I was off-key, then demonstrating his own superior whistle. I hadn’t whistled for a while after that, except when I was by myself. Now I wondered if I was out of tune, but this baby was content.

I’vewhistled to Gabriella for 23 years, most often at bedtime, and she has always loved it, off-key or not. The insult of the man in the warehouse no longer mattered.

***                              ***                              ***

When we accompanied Lisa from Recovery to her room, a nurse wheeling her on a gurney, she asked about our baby. I lied again. (The lying was eating at me.) She wondered why I didn’t look happy. I admitted I was nervous. About becoming a daddy. But I was unable to protect her any longer. I decided I would tell her as soon as we reached her room. I just wasn’t sure how.

I would give her a few minutes to get settled, then tell her. I took a deep breath and followed her.

And found a halo of family around the empty bed.

I accepted congratulations and hugs of joy from Lisa’s parents, and then from her sister, thrilled that her toddler son was about to get a playmate. My courage turned to powder. How could I tell her now, here, in front of everyone?

“I’ll be right back,” I said, but before I could go find our obstetrics nurse, she walked in.

“Would you like to come get your little girl?” she asked me. “Bring her to meet her new family?”

Here was my chance to speak to the only other person that knew what I knew.

“You’re doing fine,” she said as we walked.

“I don’t feel fine.”

“You have a good marriage, I can see that,” she said. “That will help.”

Maybe so, but I felt wretched. I harbored a secret exclusive of my wife, of my in-laws, of my parents who waited ahead peering down into the nursery window. I couldn’t keep it hidden much longer, and that brought a vast relief, but I believe in a proper order. Lisa had the right to know first, before our families. That complicated things.

I also knew this revelation would bring her an unbearable anguish. Aside from the death of her beloved Nonna three years before, I had never seen her beautiful cheeks punctured by pain. Now I was the needle, about to inject her with a grief that would last a lifetime.

***                              ***                              ***

By the time we got back to the room, my guilt turned to terror. Lisa’s aunt and uncle had arrived. And my parents accompanied us.

I can usually tell how I’m feeling by heeding my knees. After untold hours playing basketball in my youth, my knees crack when I crouch, strain when I reach, and throb after I make a presentation at work. That day, the weight of my secret burden made my knees thrum with aching.

Why was I sad? Since that evening I had dared to peek first at the home pregnancy test, finding a plus-sign where there had been only blank dashes, I had wished for a daughter. And here she was. In my arms.

Lisa accepted her baby with tears sparkling her brown eyes. She looked exhausted, weeks and months of expectation and worry taking their toll. But now her face stretched and brightened until round and rosy.

Her mother clasped her hands together with joy, her father wept. Her sister extolled the baby’s virtues. Her aunt said they would straighten out her nose…if it didn’t go back by itself. My dad seemed almost embarrassed at his own emotion.

It was my mom who breathed, “You okay?” For one moment, I wanted to take her into the hall and unburden myself. Then my notion of proper order solidified.

“I’m just tired,” I assured her.

I tried to avoid Lisa’s eyes, but she had heard. She smiled with compassion and squeezed my hand. I clutched back. I could get through this.

After that, time dragged at my fatigue. I searched for a way to tell this welcoming committee that Gabriella looked tired, or needed to nap, or had to go back to the nursery, but I couldn’t even convince myself.

Then Lisa’s aunt said, “I bet they’re adorable, too.”

We had just finished opening gifts, a jacket and accessories imported from Italy. Included was a pair of furry cowboy boots, and now they wanted to see the feet they would warm.

“It’s kind of cold in here,” I dared.

“And she’s all swaddled,” Lisa added. “Why don’t we wait until later?”

Then our nurse appeared in the hall. My wife called thanks for her help and encouragement. I met her at the door. After a moment’s brainstorming, she came in and said, “Why don’t you all give us a little while? It’s time Lisa got her first nursing lesson.”

Relief washed through me. I steadied my balance against the headboard. The family filed out with kisses and hugs.

“Can I stay?” Lisa’s sister said.

“Do you mind waiting outside?” I said, back-pedaling for rationale, afraid I had hurt her. “I wouldn’t really be comfortable being in here if you were, too.”

Lisa looked at me strangely. I shut my eyes. I supposed it wouldn’t be so bad if they learned the truth at the same time, would it?

“It’s okay,” my sister-in-law said. She squeezed my arm, worried about my feelings. She said she had to call her husband, tell him he was an uncle. I thanked her as she left.

It was time.

***                              ***                              ***

“We have something we need to tell you,” our nurse said. She stood on one side of the bed and I was on the other.

“Is she okay?” Lisa said. I’ve always loved her intuition.

My knees grew numb and I sat. I gasped, unable to utter what I’d waited all this time to say.

“She’s okay,” our nurse said. “But she’s going to need a little extra love.”

I leaned in. “Gabriella’s got some–” I said, unable to finish.

“Some slight problems with her feet.”

“She’s still beautiful,” I said, as if that was a consolation.

“Why didn’t you tell me?” Lisa said.

Our nurse said, “Paul thought you should know before the family.”

It was as if she was my translator, but I spoke up as well. “And it was too soon after surgery down in Recovery.”

Lisa unwrapped the blankets and examined Gabriella’s feet with the eyes of a physician assistant, the heart of a mother. Tears filled her eyes. “Is that all, just the feet?” she said.

“We’re having a couple doctors come see her,” our nurse said.

“What kind of doctors?” Lisa asked. She arranged the hospital blanket like green paper around flowers, leaving the baby’s feet exposed. Now I focused, for this was new information for me. “An orthopedist?”

“And maybe a neurologist. Plus, we’ll have a geneticist come by.”

A geneticist?

She continued, “It’s normal to have a genetic consult when there are multiple orthotic problems like this.”

Lisa was crying, hugging our frightened baby. I asked whether she was mad I’d held out on her. “Thank you for telling me first,” she said. I exhaled. I had known she had the same sense of decorum.

The gratitude in her strained smile brought a strange feeling. The fear and embarrassed fortitude that had cohabited in my heart this day took flight, replaced by a momentary peace.

Maybe things would be okay. Maybe okay meant something different than I had ever known.

We sat in that small room, Lisa and me on chairs, the neurosurgeons and the plastic surgeon arranged on the desk and against the wall. We swiped at the tears on our cheeks and tried to absorb the word the lead brain surgeon had spoken: sarcoma.

Meanwhile, they advised us not to give up hope. This was only the frozen section, we couldn’t be sure until we got the results of the biopsy. They said sarcoma again, using words I recognized, defect in the skull and pathology and then the giveaway, oncologist.

My fear took shape. I worried for my daughter, but no less for my wife, pregnant with our second child.

The doctors mentioned that the head of pediatric oncology at Robert Wood Johnson was a well-known figure and a wonderful man…but, alas, he was traveling. It would be his colleague instead who would come to see us. Hopefully today. In the meantime, owing to the peculiar nature of the…thing…they would send it to Children’s Hospital in Chicago once the pathologist here finished with it.

They gave us a few moments, allowed dark horror to settle about the small conference room like soot dumped through a ceiling fan. Lisa asked about chemotherapy, about radiation treatment, about other treatments, but the doctors deferred the tough questions to their colleague yet to come. The plastic surgeon explained the procedure for closing the woundslicing a horseshoe shape in our daughter’s scalp and stretching the skin to cover the defect, which I was slow to realize was the hole in her head, in both flesh and skull, where the tumor had been.

Then came the moment I dreaded even more than the anxious times to come trying to process the diagnosis. It was time to bring in the family. They crowded outside the door, white-faced with fright. Lisa’s mom refused to accept it, saying again and again, “No, not Gabriella.” My own parents were stuck in traffic.

A gurney squealed into the hallway, the one carrying our daughter. Lisa and I rushed out to meet it. I had always viewed myself as her protector, but I knew no way to shield her from this.

We called to her, fighting a deluge of tears at her swollen face, puffed round. Her head was encased in a wrap of bandages and a mesh helmet not unlike the chainmail models once worn by jousting knights. Gabriella was crying, delirious, frightened, lost, but her eyes crinkled at the sight of us. I shared her relief, as if just seeing her gave me hope.

Upstairs, in her room, we buttressed her hospital crib with our bodies. She shifted back and forth on crinkly chux paper. Our daughter brightened when we came into view, and I wondered how she could see at all following her recent cataract surgeries, the shadows moving above her bed, a rotation of anesthesiologists with a handful of needles, nurses there to take her blood pressure and her pulse and to read the beeping red digits on the monitors, and us, the familiar voices. It was almost as if she had grown accustomed to seeing without lenses. (She would have intraocular lenses implanted in a few months, but we had put off that and her strabismus surgery. The tumor was more urgent, for reasons I now understood.)

My parents arrived. They, too, were unprepared for the news. They seemed stoic in their response, but when I returned to Gabriella and came back past them to the sink, I found my mother wracked with sobs in my father’s arms.

For all we had been through, we all knew this was worse.

The oncologist arrived. At first he seemed almost bored by the details, and I became irritated. Then came an impossible twist. As a resident in a Long Island hospital, he had treated a child with the same diagnosis we had recently received, Opitz trigonocephaly. This quirk gave rise within me to an unexplained optimism.

The oncologist protected our flickering hope with a wait-and-see attitude: based on his cursory glance at the frozen section, he was unconvinced the tumor was cancerous, only unusual. He reassurances fanned our unreal expectations.

To be continued…