Day 7, Story 7: The Hunger

A short memoir in 3 parts.

My wonderful daughter, Stella. (Taken during her first Christmas season.)

This story is dedicated to Erin, Sylvia, Rocio, and Hatice.

Introduction

At 31, I was the neurodivergent mother of a neurodivergent baby. But I didn’t know that. Not about my daughter and not about me.

She nursed just as the books say a baby should, for about a week. Then she battled. The breast, the bottle, me. 

My sanity frayed because I knew there was a problem that no one else could see.

I craved empathy like a drug addict in withdrawal. I searched day and night and found it nowhere. Not even for sale. Therapists, several lactation consultants, a postpartum doula for Seattle rockstars—we couldn’t have afforded her anyway—seemed to serve only judgment. So that’s all I ate.

We both starved. 

Sick with anxiety, I lost 30 pounds in the first two months of my daughter’s life. I tried drinking olive oil. Straight up. Part calorie loading, part penance. I gagged and spit it up. Just like my baby when I tried to feed her. 

It felt as though a lifetime of not-quite-rightness manifested in an inability to feed my own baby. In the early days, when not alone, I faced doubting doctors, and well-meaning but dismissive or outright annoyed others.

I became a mom not when I gave birth to my daughter, but when I pushed through to the other side of despair, for her.

*

Part 1: The Tube

Stella was born in August. Four months later, baby’s first Christmas was different than I expected. 

Stella’s cheeks were red and raw due to frequent attaching and removal of various medical tapes. I tried different types, hoping to secure her nasogastric feeding tube to her face while inflicting the least possible amount of dermatological and psychological damage.

Meals were not bonding moments. They were medicalized ordeals. Picture, if you will, a portable pump. Like an old school gaming system with a few buttons and a digital read out–but you only win if you can stop playing. 

Along with the pump there were large syringes for gravity feeds, plastic IV-style bags that connected to the pump and smelled like new shower curtains, and hypoallergenic formula that soured quickly. 

The nasogastric tube went down Stella’s throat and into her stomach. When I tube-fed her, I felt more like a surgeon than a mother. Before each tube feeding began, I used a stethoscope to listen as I sent a puff of air, from an empty syringe, down the tube. A telltale popping sound would indicate that the tube was in her stomach. Rather than a lung. 

Then it was time to hook up the tube and run the pump. I’d monitor Stella carefully for any gagging or gurgling. 

Mishaps were common. Sources of trauma. Stomach contents would come up and out of the tube. Blood would surround the tube in Stella’s little nostril. The pump would malfunction and feedings would need to be started all over again. 

The worst of the worst parts was that the tube would come out regularly. It’s astonishing to me, in hindsight, that the emergency room was the only available source of help. Not only were these constant hospital visits expensive, they were time-consuming, exhausting, and traumatizing for my daughter.

After all the waiting, tiny Stella would lay on a hard bed in the harsh light of an exam room. With masked strangers hovering over and holding her down, the tube would be replaced while she screamed. The kind of scream that alerts a mother’s brain to a threat to life and limb. 

The tube would then come out again the next day, maybe the day after. 

So I learned how to put the tube in myself. This process requires planning and calm. First, you lubricate the tube, then you force it down the throat, somehow hold it in place with one hand while making sure baby doesn’t grab or pull the tube and also taping the end of the tube to baby’s face with the other. Finally, you check the tube’s placement with the stethoscope and puff of air and popping sound.

During one replacement effort, my nerves and her screams caused the tube to go in her nose and out her mouth. A little jolt of horror. I tried to insert the tube while she slept. It half-worked once.

To get enough nutrition from a tube, a baby becomes a machine. Stella needed to be fed every three hours, and feeding could take up to an hour. I worried that my extreme tiredness would lead to mistakes. What if the tube wound up in her lung? 

I lived with the fact that this whole disaster unfolded because my milk caused my baby pain. Every time she nursed, she wound up in agony. She would cry and turn away. In hindsight I realize she was fighting for her life. We both were. 

Instead of feeding, she would gnaw her fingers, which smelled of stomach acid.

I worked around the clock to get enough calories into her. I used a spoon, a tiny cup, a small syringe, causing it to simply run down her throat. This wasn’t “feeding.”

Thanks to this continuous labor, she “ate” just enough to get by, before the tube. She didn’t lose much weight, and she did grow longer, but she didn’t gain any weight either. 

I just needed to try harder. ‘You have to hold her like this,’ said one lactation consultant. ‘You haven’t established a proper latch,’ said another. ‘You don’t seem comfortable. Let her come to you instead of leaning toward her,’ said yet another.

Later I would realize that one of them was at least partially right. Being neurodivergent, I was so used to following the lead of others, so used to being wrong, I couldn’t relax and let someone come to me. Not even my own baby. I felt I had to bend over backward, or forward in the case of nursing, to keep an interaction from falling apart.

At first, no one believed me. But then she started to look pale, even a bit gaunt, with a grayish cast. Her resistance to nursing or bottle-feeding turned into an all-out aversion. By then, the problem was so severe that a feeding tube was necessary. It wasn’t inevitable. 

With the benefit of hindsight, I sometimes wonder how it all would have played out if I was neurotypical and communicated neurotypically? What if I was more reasonable, less brutally honest? More clear, less direct?

“We just have to get her through this,” I would think constantly. After all, she was a healthy baby. She just hated to “eat.” That’s all.

Meanwhile, my daughter and I were alone for up to 12 hours a day, five days a week. Compared to my pre-pregnancy self, I was skin and bones. I couldn’t take care of myself. I really couldn’t.

We didn’t have access to a car most days. Freedom came from taking walks, between tube feeds, through the park and by the shops along the strip near our rented house. Stella and I would stop in just about every day at my favorite coffee joint and paper goods boutique, and the grocery store. 

Here and there, as usual in an area of Seattle so close to downtown, I’d see syringes on the ground during our long walks. They were wedged into the cracks of sidewalks or nestled in the mulch of garden beds. Part of the infrastructure. 

These syringes were functionally different from those I used to feed my baby, but syringes all the same. I noticed that my reaction to seeing discarded needles on the ground was no longer involuntary disgust or general frustration with a system that doesn’t care for people. Concern became visceral rather than abstract. I thought, “That’s someone’s child.” 

Stella and I venture out for one of our walks.

*

Part 2: The Choice

In the thick of the tube feeding haze, Christmas season in full swing, I watched television while Stella napped. A holiday-themed diaper commercial showed angelic infants dreaming in their bassinets with a carol-turned-lullaby as soundtrack. Their smooth, round cheeks were unmarred. Their peacefulness complete. Against my will, bitter tears burned my eyes. I found my entire self twisted with envy, boiling with rage.

Until one week before Stella’s birth, I worked as a copywriter at an ad agency. I’d written prose about large cinnamon rolls and slightly larger ski resorts. I could imagine the creative brief, concept, pitch–the entire process that resulted in that carefully targeted manipulation. But the nerve hit was so deep, beyond the reach of rationality. In the part of me that knew I was defective.

Since then, there have been so many revelations and reversed courses in my path through motherhood, far from any well-worn route. But I now look back to this low, just me sitting alone in the artificial glow of an overwrought diaper commercial, as a catalyst.

During that moment, I knew I couldn’t stay there, in that dark place. Jealousy doesn’t sustain you. It drains you. Anger isn’t nourishing. It eats you. 

I sat in my fury and envy. Confronting the ugliness, I made a choice to not feed it with self pity. It was not going to be easy. I didn’t know how. I just knew something had to change. If not for my sake, then for Stella’s. It was a start, or a promise to start.

That decision soon led me to write. I’d started a blog, half-heartedly. Perhaps I could use it to keep my feelings, unlike the formula, from turning rancid. 

I shared updates with the family on how Stella was faring and how we were managing. Her latest milestone, most recent medical appointment, and how much she was taking in by tube–each milliliter accounted for in a spreadsheet I referenced in reports to Stella’s doctors. Increasingly, I also shared my experience in the struggle.

In the weeks that followed, the blog became a beacon. I began hearing from mothers, across my city and around the globe, who’d found our story. Their babies, too, refused to eat and were given feeding tubes with no plan for weaning from the tubes. No end in sight.

I got to know several of these women, sharing phone calls and emails, desperation and encouragement. We did the same anxious things and thought the same anxious thoughts. Our feelings, stories, and longings were not just similar, but practically identical, despite our differences in cultures and backgrounds.

There was Erin with her grace, sense of humor, and a baby boy who seemed a lot like Stella and was born within days of her. Hatice was passionate, honest, and generous, and even sent Stella presents from Singapore. With Sylvia, originally from Costa Rica, her soul was so torn apart that it made her courage all the more moving. Rocio showed such depth of devotion and commitment to her premature son, helping him overcome his feeding aversion after months in the NICU.

I still marvel at how we were all able to connect on a little virtual island in the middle of the internet ocean. Alone, together.

Thanks to them, I began to realize that I wasn’t a failure or problematic or a pain in the ass for complaining to doctors constantly. I was a mom, doing her best in a challenging, isolating situation. 

We had empathy for each other. And soon I started to develop empathy for myself. When perceiving an absence of empathy from others, I no longer experienced a free fall into anger, allowing me to be more present. I now had a foundation to stand on.

By the time Christmas came around, I had developed a bit more confidence. I found moments of peace even in the face of the same tube-centered reality. I started to tune into Stella and trust my instincts, rather than look to “experts.” That’s when things started to change.

*

Vintage “Happy New Year” card

Part 3: The Leap

After months of tube feeding, Stella hit a plateau. She never took more than about half of what she needed calorically for the day by mouth, the other half by tube. And aside from some anomalies, that’s where she stayed.

I knew that the tube had to come out. The pain that caused Stella’s feeding aversion was gone. Also eliminated was the pressure from me in trying so hard to get her to nurse, which worsened the aversion. She’d had time to learn that eating was not a threat, not a precursor to pain.

The tube had become more of a hindrance than a help. Making swallowing difficult and allowing a gateway for reflux. Overfeeding was easy, since there was no hunger gauge and only a prescribed amount of formula per day, so vomiting was common. Yet most of her doctors seemed to believe that one day, Stella would miraculously take all calories orally, and only then would the tube be removed. I disagreed. I found research to support my gut.

This situation has become more common. Tube feeding of babies, and resulting tube dependency, has exploded. This is partly due to an increase in premature births, with babies needing more time to gain the strength and oral motor skills that typically develop during a full-term pregnancy.

Also, it’s now easier for hospitals to send parents home with tube-fed babies. The digital pumps are small and portable. But technology advances so much faster than our understanding of its human impact. 

Many babies similar to Stella, following resolution of reflux, milk protein intolerance, or whatever caused eating refusal, remain on tubes. Sometimes for years and years. I knew we had to give her a chance. We had to remove the tube, and see if she would reconnect with hunger and eat enough to thrive all on her own. 

Just after New Year’s, we took the leap. I remember Stella’s smiling, tube-free face that day. How nervous I was, but also hopeful. There was only one thing for me to do–offer the bottle when she showed hunger cues. The rest was in Stella’s hands. No more battles. 

In those first days, she did take more from the bottle. But not what a baby needs to grow and stay healthy. 

After two weeks without the tube, she hadn’t gained weight and Stella’s pediatrician leaned toward putting the tube back in. Panic coursed through my veins and, heart pounding, I told him that she needed more time. He agreed to support one more week without the tube.

Right around the three-week mark, it happened. Seemingly all at once. 

Whereas previously Stella would scream, cry, and panic at the sight of a bottle, she started to lunge and grab at the bottle. She’d even cry when it was taken away empty. Stella drank more than double the amount of formula in one day than she ever had before.

Her occupational therapist declared, “Stella has internalized the joy of eating.”

Trauma leaves a mark, but so does the experience of pushing through. After Stella’s dramatic turnaround, on those days when she ate less, I’d still worry despite knowing all babies are in fact not machines but humans whose hunger varies from day to day. Yet I also fundamentally trusted myself to handle challenges and fulfill the needs of my child. That may have been the biggest miracle of all.

The change was thanks to a baby who knew what she needed, an overwrought Christmas diaper commercial, a largely unknown blog, and fellow mothers who gifted me with understanding. 

The tube was gone. Stella wasn’t hungry anymore, and neither was I.

Not the end (just the beginning)

(Note: Remaining holiday stories can be found here as they are released each day through 12/24, and ever after.)

One comment

  1. Greg Hescock · December 21

    Love conquers all.

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