The Soup

soup & ladleThere were several points in her life when we thought Sammi might end up with a feeding tube — when she couldn’t gain weight after her first cardiac surgery; when she was diagnosed with eosinophilic esophagitis and an unhelpful parent told me that’s what happens eventually to all of those kids; and when eating became such a chore that we thought it might be better than the daily fight to feed her. Expecting it to happen on and off for nine years has made me at least peripherally aware of the vocabulary around tube-feeding — NG tubes go in the nose and down to the stomach, G tubes are surgically installed right into the stomach with a button that opens and closes to insert the tube. It’s one of the reasons why Sammi’s soft, white belly is my favorite place to kiss: I secretly always worried it would end up marred by that button.

But it didn’t. Instead, I became the MacGyver of cooking for every crazy restriction she had, self-imposed or medically required, and a combination of luck and persistence kept her from ever needing a tube. Foods came in and out of her life depending on how she felt and the diagnosis we were managing, but a few choice dishes survived nearly every restriction. The first food I learned to make that she really, really liked was a very simple chickpea soup I adapted from a recipe I found in Vegetarian Times magazine.

It has become such a staple that we call it The Soup or Sammi’s Chickpea Soup. From experience, I can tell you that, aside from the fact that it’s delicious and very cheap to make, it also works for all of the following dietary restrictions:

  • Soft foods only
  • Vegetarian/Vegan
  • GERD diet (no citrus, tomatoes, chocolate, caffeine or alcohol)
  • Dairy free
  • Gluten free & Wheat free
  • Soy free
  • Egg free
  • Nut free

That winter after her first cardiac surgery, with the threat of feeding tube constantly dangling above us, this soup was the savior. I could melt two tablespoons of extra virgin coconut oil into her bowl, adding more than two hundred calories per serving. Sometimes, she ate only this soup and blueberries for days and days on end. I made several batches per week.

This soup made me feel powerful. It was a weapon I could use to fight the ribs I saw sticking out of her back and the shape of her skull so prominent under her thin downy hair. This soup let me do something about what was wrong. I fed it to her spoonful by spoonful until she could hold a spoon herself.

“Swallow, sunshine,” I told her. “It’s your soup!”

This soup is my hero.


Sammi’s Chickpea Soup

adapted from this recipe by Vegetarian Times

1 Tbs. extra-virgin olive oil
1 medium onion, diced
4 cloves garlic, minced
2 (15-oz.) cans chickpeas, rinsed and drained
2 cups water
2 cups vegetable broth
1 bay leaf
½ cup roughly chopped greens — any greens will do (spinach, chard, parsley, kale)
1 ½ tsp. salt
1 tbsp fresh lemon juice (optional)

Saute the onions and garlic until the onions are translucent. Add all the other ingredients except the lemon juice. Cook uncovered over a medium-high flame for roughly fifteen minutes — until the chickpeas can be mashed against the side of the pot with a fork. Turn off the heat, remove the bay leaf and, using an immersion blender, puree the soup to the consistency you like best. If your diet and palette allows, add the lemon juice and serve.

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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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Pocketing

Once we knew what a double aortic arch was, and that Sammi had one, all sorts of mysteries were solved at once. We now understood the mystery of the unresolved loud breathing, which was the scariest of all, but we also understood something far more insidious: we realized why Sammi didn’t eat.

She was over a year when the diagnosis came. As we had with her sister, we first offered her liquidy purees that I made, from scratch, when she was about six months old. Ronni’s immediate joy at the discovery of food at that age was a stark, stark contrast to Sammi’s total disinterest. Where Ronni’s legs had swung below her seat when she saw her special little bowl and spoon coming nearer, Sammi would look away, eyes distant, and only occasionally grace us with the tiniest “o” of an opening.

Into that tiny “o,” she would allow only miniscule flecks of food — barely the hint of food, really — into the inside of her lips. The first foods we offered — oat cereal mixed with breastmilk — resulted in my very first front-row seat to projectile vomiting. She seemed unfazed by it, though, so we tried again, and again, until her new pediatrician (by 6 months we had ditched the patronizing seen-it-all man for a female pediatrician we would grow to love like family) told us to stay away from grains for Sammi for a good six months.

Thus began a totally puzzling game of “why doesn’t she like this food?” My mashed and cooked apples, pears, peaches, and sweet potato didn’t make her vomit, but she didn’t like them, either. Mashed peas and carrots and green beans weren’t any better. We went on and on through the list of foods, and still, the tiny “o,” the thrusting-tongue refusing to swallow, the disinterest. We were told to keep on trying, keep on offering, maybe-if-she-eats-she’ll-sleep-better.

Then, like a slap in the face, we discovered that Sammi would happily eat many foods so long as they were jarred, stage-1 baby food — not my homemade food. At a last-minute outing without any food for her on hand, I ran into a grocery store and bought an emergency jar. To my surprise, she ate half of it in one sitting.

I quit making baby food. There was no point.

blueberriesWhen it was time for her to try feeding herself, we made tiny chunks of everything we’d tried before, and nothing worked. Once again, it was a maddening exercise in preparing food and throwing it away, preparing it and throwing it away, over and over, like Sisyphus pushing the same pot of soft-cooked pears up a hill every day until the end of time. When she finally landed on two foods she would deign to put in her mouth on her own, they were blueberries and freeze-dried corn. The corn, totally dry and designed to simply melt in your mouth, was awful to my adult palette, and even an entire bag of it — which would take her two weeks to finish — measured up to less than 50 calories. The blueberries weren’t much denser, but she seemed interested, at least, and so I clung to that, cutting blueberries into quarters and keeping track of her intake each day.

One day, when she was nearly 11 months old, she was crawling on the living room floor in the late afternoon, when I noticed that she had something black sticking to her lip. I looked closely, and it was a blueberry, poking out of her mouth. She’d last eaten blueberries hours before. I looked into her mouth, and a half a blueberry was pocketed there, in the space between her gums and her cheek.

I checked the next day, and it happened again.

I called the pediatrician. “She’s pocketing food in her cheeks,” I said, “isn’t that weird? Shouldn’t she be chewing and swallowing it by now?”

“Hang in there, mom,” she answered. “Give it a little more time. Check back with me next month. Some babies take longer to get into food.”

I grew to hate feeding her. Every meal she didn’t eat was a night time nursing session I knew I’d have to live through, and though she was growing, meeting developmental milestones, and charming the world around her, sometimes I found myself in the kitchen, facing her high chair, and saying angrily, “No?! Not this either? No good, again?!”

I felt like a monster. Surely, this was a phase; babies go through phases, children go through phases, I would not be having this fight forever. She’ll eat normally.

She pocketed the food while I tried to pocket my frustration. Only one of us was successful.

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