Just Finish

pleasefinishIn the fall of 2013, Sammi’s mealtimes became the most tortuous they’d ever been. Eating enough food took every free moment of her day.

Like the endless meals of her earlier years, Sammi’s times of sitting at the table became a fight between my instinct to fill our relationship with more than just the constant nagging to eat and my growing worry over how obviously difficult it was for her to get enough calories in a day. I could feel my blood pressure rise every time I watched her sit, holding a spoonful of uneaten food, and talk to me about what she had seen on television or what was happening at school. No food was tasty enough to hold her attention. She would rather do anything other than eat.

“Just. Eat. That. Bite,” I’d say with my back to her, clenching my jaw.

Ten minutes. Twenty minutes. Thirty minutes. After half a cup of cereal and milk, it was time to leave for school. On a good day, she would eat half of a small quesadilla, a few crackers, and one Oreo for lunch. On a bad day, just a few bites of her quesadilla. At dinner, she stopped every five minutes or so to refill her water, go to the bathroom, or inexplicably stand up and bounce next to her seat. By 7:45 — usually more than 90 minutes after dinner began — we would have to stop her meal so that she could go to sleep.

Massive doses of Prevacid — a proton-pump inhibitor that kept her stomach from producing acid — took away her symptoms, but anything less than a crazy dose returned her to us as the sunken-eyed, chronically underfed child we’d struggle to help through a day.

To say that this process was maddening is to touch only the surface of the fury it brought up in me. Why couldn’t she eat like a normal kid? I spent much of each school day in a state of cognitive dissonance, trying not to think of how few calories she was taking in, how little fuel she had to get her through gym class, recess, and a day of learning.

Her gastroenterology team told me, whenever I worried to them, that these kids with eosinophilic esophagitis are notoriously poor eaters. They feel nauseated a lot of the time. They have bad associations with food. They don’t know any different, so they can’t describe the feelings to us. This is their normal, the doctors and nurses told me. Continue Reading…

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Limbo

Swallow, My Sunshine: Limbo

Eosinophilic esophagitis does not have a cure.

There is currently no end for this disease, and little is known about what triggers it. Most of the time, it’s a food protein, though some children seem triggered by things in their environment. The food triggers can change over the years, which is what informed the comment I heard soon after my daughter’s diagnosis from the mother of another child with this disease. When I told her that I hoped my daughter Sammi would be one of the kids who responds well to an elimination diet and finds just one or two food triggers, she said, “They lose more and more foods as they get older. Eventually they all end up on the [meal-replacement] formula.”

So, during the fifteen months between Sammi’s remission and the relapse of her symptoms, I always knew it wasn’t over. Continue Reading…

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When It Looks Like a Blueberry, It’s Probably a Blueberry

blueberry

My daughter Sammi was born at 41.5 weeks of gestation at four pounds and eleven ounces. I have spent the last ten years reciting those statistics in reverse.

“So mom, what was her birth weight?” is often one of the first questions a pediatric specialist asks.

A pause for my answer, and then I could chant it along with them: “So was she premature?”

No, she wasn’t, I have to answer. She was what they call post-term, which is the opposite of premature. It’s late. She was waiting it out inside me, and then when she came out as tiny as a premature baby, everyone scrambled. She was totally proportionate — filled out and lovely, just miniature. The hospital did genetic testing and found nothing out of the ordinary. That’s when we began to hear two different lines of justification for her size. Continue Reading…

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Appreciation

For roughly six months — from about eighteen months old until about two years old — Sammi was a normal toddler. She did normal toddler things, had normal toddler colds, slept like a normal toddler. We moved from one house to another, and she adjusted as toddlers do — haltingly, in spurts of joy and regressive frustration. She and her older sister, now both on two feet and walking, hand in hand, moved through the world as a little team. They explored our new home, finding the places they could inhabit and climb, staring out new windows onto an unfamiliar street. I, hausfrau and telecommuting consultant, bustled around in fits of unpacking and putting-away.

We began getting a box of vegetables every week from a farm. I learned to cook kohlrabi. It was the very picture of domestic cliche. I saw us in the Paul Simon song “Beautiful,” singing to myself, “Back in the house, family of four, two doing the laundry and two on the kitchen floor.”

This could work, I thought. This could be ok.

Sleeping toddlerThe shoe was waiting to drop, however. Regular struggle steals more than the moments in which it pushes us; it steals the innocence of all moments before and after. That summer when I set up house, learned to cook, anticipated Ronni’s kindergarten year and toilet-trained Sammi — that was another tease, another prelude like my easy pregnancy. Something sinister was always coming. Is always coming.

Sammi’s ears were perforated by tiny tubes — common among children now, she’d had them placed the same day that her doctor had discovered her double aortic arch. It meant that infection didn’t sit, festering, in her ears when she got a cold. It either drained into sinuses or, sometimes, out of the tubes and onto her pillow, leaving a puddle of ooze smeared across her face and in her hair as she slept. Once, I arrived at her child care to find her still asleep, the ooze soaked through her mesh cot and dripping on the floor below her. I took her to the pediatrician on-call — not our beloved regular doctor, but a cranky older man who’d seen everything.

“It’s earwax,” he said, when I described how I’d found her.

“But it was green,” I explained, “and a little orange.”

“Not an infection,” he declared.

We went home. The next day, her face was swollen and she had a fever. I called our pediatrician, who prescribed ear drops, oral antibiotics, rest, fluids.

This scene began to repeat itself until, ostensibly, the tubes fell out or became useless. Infections began to collect in her sinuses on a regular basis.

Her pediatrician mentioned adenoid surgery offhand. An aside. Maybe. For later. If this didn’t improve. Also tonsillectomy. Maybe.

David and I knew, the minute that the words “adenoids” and “tonsils” released themselves into our orbit, that Sammi would have them out. We saw it coming and waited for it, impatiently, like a train terribly late but utterly expected to arrive: she’d have them out eventually. The pediatrician had a magic number, and that was three. Sammi needed to have three sinus infections, and then we would return to the otolaryngologist for tonsil/adenoid assessment. There was no doubt she would have three infections, and so after the first, we secretly hoped that the next two colds would end up there. Colds became fevers became sinus infections became antibiotic stomach issues. The autumn and winter filled themselves with her misery, head down on a large cushion on our living room floor, watching tv limply.

When the otolaryngologist examined her in February of 2008, he used the words “impressive” to describe her tonsils. When she opened her mouth, he said, “Oh my lord.” The tonsils and adenoids came out in mid-March, her fifth experience with general anesthesia. Her airway issues interfered with her recovery from the anesthesia, forcing us to stay overnight in the hospital with her. A family member visited and observed, from the foot of the bed, Sammi propped against her pillows watching cartoons.

“Dora!” Sammi croaked, squeaky and hoarse at once. She clapped.

That family member burst into tears.

I could not understand what was wrong, and asked her. She said, “It’s just so hard to see her like this!”

Like this?, I thought. Happy to watch cartoons in bed? Eating a popsicle? This, I thought, is the best it gets. This is alive. This is another round of anesthesia over, another defective part of her gone. This is a damn party.

I am on guard. The perfect moments — children playing in a living room of empty boxes, summer squash sauteing on the stove, medicine that works, surgery that doesn’t kill my child — the perfect moments are always before or after something else. Since Sammi was born, I have lived every experience partly in reflection and anticipation, asking myself how I will appreciate or regret it later or how it compares to the moments before.

It’s a hoarding, truly. I am collecting my time with my children, categorizing it, weighing it, blessing and cursing it and setting it up on display in my head for assessment. The through line: are you appreciating this?

Well? Am I?

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Untethered

As expectant mothers, we all spend a fairly intimate and intensive period of time with our obstetricians or midwives, only to have the relationship effectively end after the six week postpartum checkup. It’s disorienting to have someone so focused on your health suddenly drop out of your life entirely. The same thing happened to us with regard to Sammi’s health after every chapter of her medical journey ended. Some would make returning appearances later, but we only know that in retrospect.

When Sammi was released from the hospital after her first cardiac surgery at 14 months old, we were essentially released entirely from the care of the cardiothoracic surgery department. On a Tuesday, a man had his hands quite literally on my daughter’s aorta, and on Thursday, we walked out of that hospital with the expectation that we would never see him again. His advanced practice nurse told us that children with double aortic arches seldom need any followup care.

It is hard to explain what it felt like to carry her out of the hospital that day. She had a four inch incision running the length of her shoulder blade, covered with strips of surgical tape. Our only instructions for her care were to scoop her up like a newborn, not under her armpits, for six weeks, and to return her to her normal diet.

What was her normal diet, anyway?

At fourteen months, she still would not eat anything more than stage-one baby food from a jar, which is the consistency of watery mashed potatoes. She hadn’t even eaten that in weeks due to the pre-surgical dietary restrictions. Her pediatrician told us to treat her like a baby just starting solid foods and offer her everything. Shortly after we returned home to her joyful older sister, I snapped this picture:

Sammi & Ronni with snack

Sammi had never eaten a cracker in her life, but she was following Ronni around the house when Ronni was eating little bunny-shaped cheese crackers. Ronni offered her one, and Sammi shocked both of us by eating several.

“She’s eating another one!” Ronni kept shouting.

I cried, a little.

Sadly, it never amounted to much. Sammi went from sixteen pounds and nine ounces before the surgery to sixteen pounds and one ounce after it. She gained no ground in the first month after her release. We tried to get answers from the surgeon’s staff, but they had already done their job. They are not clinicians; they don’t manage day-to-day life. They cut and sew and mend structural problems. Ours was not for them to manage anymore.

We went to our pediatrician. She conferred with the otolaryngologist, who sent Sammi to have her esophagus dilated — now her fourth time under general anesthesia in a three month period. The radiologist who looked at her esophagus under anesthesia said that it didn’t look very constricted at all — barely worth dilating — and that what was more troubling was the musculature of her esophagus, which was uncoordinated and spasmodic in some places. It’s called dysmotility, he said, and no one knows whether or not it will go away.

For two days after that procedure, Sammi ate real food. She ate pizza one night. I took more pictures and called all of our friends and family, and then after two days, she stopped.

Her pediatrician gave us three months to put weight on her or she would insist on a feeding tube.

The surgery meant to end these struggles was a tease. The surgeon brushed his hands together and walked away, the doctor who dilated her esophagus shrugged and moved on, and the pediatrician, earnest but far out of her league, suggested Carnation Instant Breakfast.

I am just a parent. I am not a doctor, I am not a dietician, I am not a magician. I didn’t know what to do. I was alone with a baby and a never-empty bowl of blueberries in cream. Doctors cut her open, stretched her insides, gave her drugs, and then sent her home with me. Your turn now, mom. Don’t mess this up.

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