Living in Holland

It’s 4:30pm, which means it’s time to give my 2-year-old a small cup of thickened Hartzler’s whole milk. Daniel’s cup is in my right hand. I gingerly hold it up to his mouth and look beyond his high chair to the skeletal trees outside on this early April day in 2014. The sky is the color of nothing.

I glance down at my phone in my opposite palm and thumb through Twitter to see if Brick and Barrel, Cleveland’s latest craft nano-brewer, has announced its intent to open in the Flats as rumored. I don’t see anything. I’ll formulate that pitch later.

I usually try to avoid the distraction of my phone while I’m feeding Daniel, not only so he doesn’t choke, but also because meal time is a deeply personal way in which we connect. But when you’re a working mom and full-time caregiver there isn’t enough time in the day, so disruptions are unavoidable.

Then, a milestone happens. Daniel swallows four ounces of milk without throwing up. He actually keeps it down, which means we don’t have to supplement this meal with a gastrostomy tube feed. My breath hitches. I jump up like popcorn in a skillet.

As a food writer, I’ve experienced all kinds of sensory-indulgent meals, from an exquisite Plated Landscape foraging dinner at a mushroom farm to an Earth-to-Table meal at the world-renowned Chef’s Garden to a luxe 12-course tasting menu at Trentina that brought me to tears. But this experience with my son was transcendental.

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I squeal at the ceiling. I text my husband, Dan, my mom, my mother-in-law, and my sisters. For a moment, I allow myself to consider the possibility that Daniel might not need to undergo a Nissen fundoplication—a risky surgery that involves wrapping and stitching a portion of the stomach around the lower esophageal sphincter to stop the reflux that he has suffered since his g-tube was placed at 5 weeks old.

You see, the highs are really high when you’re the parent of a child with special needs. The small milestones shake your world. They usurp the day’s hardships. You feel like you’re flying.

That’s how I felt until later that night when I gave him his next sip of milk and spoonful of puréed soup from Heinen’s. Coughing, retching, and vomiting followed. Dan and I went about filling his gastrostomy bag with 150 milliliters of corn maltodextrin-laden PediaSure to supplement his nutrition. Our hearts ached.

Celebrating the ability to eat is indescribable, at least coming from someone who was told that her son may never be able to eat or drink at all.

The doctors told us Daniel would face a lifetime of challenges—sitting, walking, talking, and eating. Of all those abilities he’s conquered in some way, the one that gives me the greatest joy is watching him sip from his cup and savor different tastes and textures.

I want to emphasize that this isn’t just a story about my family—there are so many families with children who struggle to overcome significant physical or behavioral challenges so they can eat. I share our story to help cast light on this population for whom food is not a luxury to be photographed and posted, but a basic measurement of viability—they need to find a way to nourish the child they love.

Jonathon Sawyer, a chef I revere for his authentic, unstoppable passion surrounding his craft, says food is storytelling.

This is our story.

Life, interrupted

I’m going to give the neonatologist the benefit of the doubt that he acknowledged my son’s birth with a “congratulations” before he inquired whether I took drugs or drank during my pregnancy.

It was the morning after Daniel’s late-night birth December 13, 2011. I was still hazy from waking up after a 36-hour stretch of a workday followed by long labor. The words sounded as if they had traveled through water. I shook my head. I had taken great care of myself during my pregnancy.

Daniel was down in the NICU, my doctor informed me. Dan stood next to my bed. He had been up all night and already knew this. The doctor told me that Daniel had a cleft palate and some other physical anomalies. A hospital stay was anticipated, and a series of tests were planned.

Dan wheeled me to the third floor of the Fairview Hospital NICU. My little 5-pound, 9.5-ounce miracle was anchored to machines and his incubator with cords. An orange tube provided nutrition through his nose. He lay there sleeping, so precious and seemingly unaware of the tumult.

The doctors carefully deposited him in my arms. I clutched him tight, leaned into his head and cried tears of joy and despair. He was so beautiful, yet so fragile. All I wanted to do was tuck him back into my abdomen to protect him, and leave the beeps and alarms behind.

From that point on, Dan and I spent about 18 hours a day at the NICU.

Daniel underwent an MRI and the gamut of organ scans. The bar was set—if he could drink 40 milliliters, or a little over an ounce of milk, he could go home, the specialists told us.

So began our journey of trying to feed him orally.

I pumped my breast milk around the clock while we worked on bottle-feeding. Every night we collapsed into armchairs in the Ronald McDonald Room and set our alarm for the 11pm feed, just in case we happened to fall asleep after negotiating an 8:30pm nasogastric and bottle-feed attempt.

Sometimes we’d leave so late that the only items hanging along the NICU entryway were doctor’s white lab coats. I tried to block out the Christmas music invading my space.

Daniel had a tiny mouth and a high arched palate, so a regular-sized baby bottle quickly proved to be ineffective. We tinkered with cleft palate nursers, but we couldn’t fit the bottle tips over his tongue.

We then tried feeding the milk through a tube about the width of angel hair pasta. I filed my fingernails way down and tied the tube to my index finger.

I’d place the tube in Daniel’s mouth while carefully squeezing the bottle with my left hand. We tried this for a few weeks, but it didn’t work either.

Weight gain was one concern. Daniel hovered around the 10th percentile for weight. A 100-gram drop from one day to the next prompted a consultation with the specialist team.

He was at risk for aspiration, we learned after his swallow study, and he subsequently was diagnosed with dysphagia. Liquids would have to be thickened with Xanthan gum, if he could drink them.

The nurses and hospital therapists encouraged us to keep trying, while the doctors determined that the placement of a gastrostomy, or feeding tube, was imminent after the New Year. Daniel would be moved to the Cleveland Clinic’s main campus for surgery in mid-January. Christmas would be spent at the NICU.

We pleaded with administration to allow us to spend the night in the NICU’s nearby nursing room so we could be with Daniel through Christmas Eve and Christmas. They opened up an abandoned wing on Fairview Hospital’s fourth floor.

We were so grateful for the opportunity to be close to him. For parents forced to leave their little ones each night, especially during holidays, exiting the NICU is like walking toward our version of death row, especially when discharge is unforeseen.

At about 12:30am Christmas morning, we laid side by side in the abandoned floor’s patient beds, weary and heartbroken after ushering in the holiday holding our little one draped with as many cords as an outlet power strip.

In the days leading up to Daniel’s birth, I anticipated having my first Great Lakes Christmas Ale of the season. That night, Dan produced two bottles from our overnight bag, and we quietly toasted my inaugural post-birth Christmas Ale to Daniel and our love. I took a sip. But I didn’t feel anything.

The outcome of all of this—the surgery, the future, and Daniel’s quality of life—careened through my mind.

Reality hard to swallow

Daniel’s g-tube surgery was January 11, 2012. He was diagnosed with a rare chromosomal abnormality that rendered him medically fragile. It was genetic, and he inherited it through me. I felt responsible for his hospitalization and inability to eat.

Fault lines fractured my heart. Why, I begged over and over silently, couldn’t we have traded destinies?

We struggled in the days, weeks, and months ahead as we watched other families leave the hospital after the obligatory two-day stay, or pretended to ignore parents out-and-about, multi-tasking while the chubby baby in their arms guzzled the contents of a bottle.

The perfunctory act of babies feeding themselves at restaurants confounded us as we fumbled around giving Daniel eight one-hour-long g-tube feedings every two hours around the clock, plus trying to bottle-and breastfeed.

A distressing side effect of a g-tube is reflux. Daniel threw up all the time. We tinkered with formulas, volume, time of day, positioning, craniosacral therapy—you name it. Nothing worked. He writhed in pain during many of his feeds. The movements then prompted incessant beeping from the pulse oximeter on his toe.

Nutrition appointments and weekly weight checks were the norm. I’d hold my breath, willing the scale’s red digits to rise like a preheating oven. The growth chart was a constant reminder that Daniel’s weight wasn’t keeping up with typically developing babies, and it was an ongoing source of anxiety.

In those early months, I could barely digest this new reality. I retreated. I was careful about whom I let into my personal space. Mostly, I was fiercely protective of my son.

A new normal

I left my full-time job at Crain’s Cleveland Business after that initial surgery, and freelanced as a food writer instead. We had 265 appointments and hospital stays at the Cleveland Clinic during the first year alone.

I could have relinquished myself from work during these times, but instead I folded the two worlds together. Compartmentalization just doesn’t exist when you have a child who is completely dependent on you for care.

I worked intermittently on my assignments, even making phone calls to chefs from hospitals. I conducted a face-to-face interview with the founders of Brick and Barrel inside a Starbucks at the Cleveland Clinic’s main campus during one of Daniel’s inpatient stays.

Sometimes I felt like a fraud writing mission-driven stories about local food, urban agriculture, the environment, and health, all the while swallowing a Subway sandwich or a Bob Evans grilled cheese between specialist and therapy appointments.

Still, I prioritized consuming the kinds of local foods and drink about which I wrote and was passionate. But then, my conscious food choices added a whole new layer of guilt. I dreamt of introducing and bonding over all those food experiences with my son.

Despite my personal priorities, I felt like a hypocrite pumping my son’s stomach with a sticky liquid made up of around 40 lab-made ingredients while I was nourishing my body with handpicked, local ingredients. I feared that my son’s enteral feeding tube would provide the only nutrition that would support him for the rest of his life.

A real breakthrough and an indication that Daniel could, in fact, eat by mouth without aspirating occurred when he was six months old. It was the first appointment with our speech and feeding therapist, Alissa Garretson, who eventually became a good friend and confidante. She fed Daniel his first spoonful of stage-1 baby food—carrots—and he swallowed a small bite without incident.

Hope always has the last word.

Eventually, we reintroduced thickened milk from a cup, which Daniel could manage in small sips. Finally, my hopes for a g-tube wean and normal eating were within reach, as long as we could get him to eat and drink more on his own.

Meanwhile, I agonized over the decision to put our son through another surgery to end the reflux. I pored through research and mommy blogs that detailed instances of children violently retching or being unable to vomit when ill after surgery turned their stomachs into a pressure cooker. I emailed experts seeking advice.

We endured Daniel’s reflux for more than two years. About 95% of babies outgrow it by their first birthday. For children born with medical issues, the problem ebbs around two years old. After Daniel’s second birthday came and went, we knew the Nissen surgery was inevitable.

My stomach churned. The surgery would be his fifth in a little over two years. I feel personally responsible every time they have to prick him for an IV while he writhes in pain. I enter my own personal hell each time I follow him back to the operating room, gown-adorned, and watch him unknowingly submit to anesthesia. Every time, I silently plead with God to trade places with him.

The April 2014 surgery was a grueling six hours long.

As I write this, the Nissen was Daniel’s last inpatient surgery—an incredible milestone for our family. The surgery stopped the reflux with, mercifully, few side effects. His weight still hovers between the 2nd and 10th percentile, but he’s thriving.

Living in Holland

What was never expected has become routine as we find our way and build our lives in this new land. And we love this boy more than anything in the universe.

We’ve made gains with his enteral food. We switched him to an organic and minimally genetically altered formula called PediaSmart. We blend it with a product called Real Food Blends, which are corn syrup—free and preservative-free meal pouches formulated by a mom whose child was on a feeding tube.

Our goal has drifted from weaning Daniel from the g-tube. Tube-dependent kiddos often don’t get hungry, so transition is tedious. I don’t know if he’ll ever be off it. I’ve realized it doesn’t matter.

What’s most important to us is exposing Daniel to different tastes in purée form and safe textures. Our current experiment is introducing dissolvable baby puffs and Cheetos. He drinks a remarkable 12 ounces of nectar-thick milk or juice each day, our hands holding the cup while supporting his chin.

We are still on a 16-hour feeding schedule that begins with a one-hour g-tube feeding at 6am. The last of Daniel’s 12 syringe feeds ends around 10pm. There’s formula to prepare, gourmet soups to blend, milk to thicken, oral snacks to be presented, and lots of dirty bibs to clean up. It feels like we eat our own meals in motion. Dinner is the only meal that does not involve any type of enteral supplement.

Our dinner ritual is not too dissimilar to that of freshly minted parents. Helping Daniel drink and eat takes precedence. We flick forkfuls of our own food intermittently, or hold off on eating until we’ve helped Daniel finish his. What matters is that we come together at the table.

In a perfect world, I would be hand-selecting garden vegetables, tree-picked fruits, and sustainably raised meat from my local farmers market, and cooking and puréeing my own Real Food Blends. But I can’t achieve utopia without making other quality-of-life sacrifices, like spending time with Daniel, at least for now. When I master the caregiver-working-parent balance, then I’ll turn toward a dietician-supervised blenderized diet and pull back on some of the convenience foods. Baby steps.

For now, we’re working with an integrative medicine pediatrician (and mom of a medically complex daughter), who is helping us introduce more whole enteral foods and a homeopathic approach to Daniel’s enteral foods regimen.

I’ve come to understand that food is a journey. Food is living in the moment. Food is a relationship—it’s about bonding with the recipient of your eff orts, while feeling fulfilled in return. Food is unconditional, can’t-live-without-you love.

In this world, I’ve witnessed the beauty, the strength, the spirit in families that otherwise would’ve gone unnoticed—a bald toddler taking her IV pole on a stroll through the pediatric children’s hospital floor; the woman spoon-feeding her grandson, a victim of shaken-baby syndrome; the autistic child who once had pica; my son’s former occupational therapist and mom of four healthy children, who traveled to an orphanage in China to rescue a baby born with severe facial deformities.

Each person and experience has shifted my perspective away from self pity and toward gratitude. Daniel has many gifts, and we feel blessed because he chose us. He has touched countless lives with his humor, kindness, and bravery.

We’re empowered by those who give us armor and fortify our resolve—the selfless moms, grandparents, sisters, brothers, aunts, uncles, cousins, friends, colleagues, bosses, and caregivers who reinforce our support system.

I’m still afraid, every day. We live on high alert, every day. I’ll always fear tomorrow, that I’m sure. I’m afraid for what will happen if we get sick or reach the point when we can’t physically care for Daniel. I think about it far too often.

I try to remind myself that we all feel that way. Perhaps the feeling is more dominant given our circumstances, but fear can also be a powerful stimulant that helps us learn, grow, and reframe our purpose. I try to face my fear with acceptance and inner peace.

Sometimes we do wish Holland were easier to live in. But we’ve come to appreciate its beauty. Holland is familiar, comforting, and enlightening. There’s no place else we’d rather be.

To follow Daniel’s journey and join the discussion of raising children with feeding difficulties, please join the Enteral Food for Thought community page on Facebook.