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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Laid in Arms

hospitalDavid, Sammi and I slid into the hospital the morning of her first surgery the way a reluctant toddler comes down a slide. All sorts of practicalities handled, bags packed for a hospital stay, all that remained was the hour of waiting in a room with a baby we might never see again.

If that sounds maudlin, that’s because it was. The risk to this surgery was smaller than most cardiac surgeries, but there is always a risk to surgery. The doctors would slice into my smooth, perfect, luscious baby’s back, pull her ribs apart, and decide which branch of her aorta to clamp and remove. The very thought of it made me weak. And yet, my job was to hand her over to these doctors who didn’t know anything about who she really was. They didn’t know she could sing. They didn’t know how much her four year old sister adored her. They didn’t know about my ambivalence about her for the first months of her life, ambivalence that I worried would make the universe believe that I didn’t want her, after all, and maybe it would take her away from us to punish me for it.

We passed Sammi around the pre-operative room — David and I, his mother, his sister, and her husband. After I refused to give her to a strange doctor to take away, screaming for me, they gave her a shot of Versed, an anti-anxiety drug that made her loopy and cross-eyed. When the anesthesiologist came to take her away, she waved at me as she was carried down the hall in his arms.

Once she was out of sight, I fell sobbing into the arms of my sister-in-law. She and I had never been close, but sometimes, the right person at the right time becomes a lighthouse. She was solid and soft at the same time. I think I fell on her because she was the very nearest person, and all my hold-it-together just dissolved once Sammi was truly and in every way out of my hands.

The details of the day — the waiting, the surprise visit with pastries from David’s aunt, the moment when the surgeon came to tell us that everything went well — these are the uninteresting snapshots of someone else’s life, the ones we look at politely but cannot connect to our own. The universal is in the humanity of kind people when you need it the most. That hug. Those pastries. David’s hand on my shoulder when we learned that they were closing her incision, and my memory flash of his hand on my shoulder as Sammi had been born, with me flayed on an operating table, paralyzed, unable to help her. She’d lived through that. She would live through this.

I couldn’t do anything to keep Sammi alive except to go and find the people who knew how, and to lay her in their arms.

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The Longest Nights

“Don’t let her get too worked-up.”

By the time Sammi was 13 months old, we’d had five straight months without her getting terribly sick, enough time for me to catch glimpses of sweetness in her. I had started, haltingly, to fall in love with her, resentment cracking with every three hour stretch of sleep. Whenever I left the room and came back, she would hold her arms up to be held, and then pat my back and say “mama.” It was the stuff of syrupy mommyblogs and Hallmark cards; she was tiny but proportionate and round-cheeked, with a fluff of reddish blond hair, big brown eyes, and smooth fair skin. Life had become almost tolerable that summer before her first birthday — I’d begun working again, a few hours a week as a freelancer, and we spent time outdoors every day. The sun was coming out, metaphorically, and then she got a cold, and all the clouds rolled in fiercely from every corner of the sky.

“Don’t let her get too worked-up.”

These were the words we were given by the cardiothoracic surgeon in the one meeting we had with him before he operated on Sammi.

That fateful cold in August of 2006, the one that set off another hospital stay and a visit with the otolaryngologist, ended in a bronchoscopy under general anesthesia and the diagnosis of double aortic arch, confirmed with a CT scan, also delivered under general anesthesia a few days later. Surgery was scheduled for October 12. We had three and a half weeks in which the orders were to stop all solid food feedings — just nursing and milk — and not let her get “too worked up.” We asked the pediatrician what that meant, and she did not mince words. “You do what you have to just to keep her calm, mom. Bring her to bed with you if that helps. Just keep her calm.”

We didn’t learn until later that rises in blood pressure could strangle her from the inside.

nightcar“Don’t let her get too worked-up.”

Sammi didn’t like sleeping in our bed. The August respiratory infection never quite resolved, and her stomach was wrecked after the antibiotics. She woke often. David and I split the nights into five-hour shifts; one of us would be responsible for all things she needed between 10pm and 3am, and the other person would take her from 3am to 8am. Most nights, that meant that one of us would spend that second shift driving around the suburbs with her dozing in her car seat, her favorite music on repeat through the car speakers. It kept her from crying, allowed her to sleep, and required nothing more of us than maintaining the movement of the car.

We went through all-night drive-thru windows for Sprite and waited until she was deeply asleep to switch to talk radio for the company. Even now, nearly nine years later, when we drive certain stretches of road, one of us will remember the way it looks at 4am in the fall. Even now, we remember that time as the nightmare it was: keep driving or the baby will cry. Keep driving or the baby will strangle herself from the inside with her own aorta.

“Don’t let her get too worked-up.”

We held our breath and drove, and we kept her alive.

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My Name is Not Mom

not momFirst and foremost, I want pediatric doctors who are smart, brave, and skilled enough to keep my children alive.

Secondly, I want pediatric doctors who will not frighten or dismiss my children.

Thirdly — and isn’t it always at best thirdly, where I come in? — I want pediatric doctors who can see me and the other adults around my child as valuable pieces of the puzzle they need to assemble in order to accomplish the main goal (see “first and foremost” above). There was never a chance that I would take either of my daughters to see a doctor who didn’t qualify for my first criterion, and if there were multiple options that fell into that category, I’d make the decision based on the best qualified in my second criterion.

I largely gave up trying to fulfill the third.

In fact, over the years, I stopped bothering to even tell pediatric doctors my name. They almost never remembered it. Every phone call from a physician began, “Hello? I’m looking for the parent of Samara Lewis?” When I said, “This is Debi,” invariably the answer would be “Are you a parent?” Even voicemails or messages I left with advanced practice nurses — the gatekeepers of the medical specialty physicians — in which I would leave my name would be returned with that same lack of regard for my individuality. I was “the parent of Samara Lewis” or, even worse, doctors and nurses would simply call me “mom.”

“Well now, mom, don’t you worry. We’ll see her in our clinic this afternoon.”

You know, mom, sometimes babies cry and we don’t know why.

“Is this mom? Nice to meet you. I’m Dr. Susan Smith, and I’ll be doing the anesthesia today.”

Despite the multiple scrawls all over every chart Sammi had in every doctor’s office, apparently there was nowhere for anyone to write my name. I fantasized about wearing a name tag: “Hello, my name is NOT MOM.”

Every so often, I’d be graced with a “Mrs. Lewis,” but no doctor ever looked me in the eye and said, “Debi, you spend every minute of every day with this baby. What do you think?”

The beginning of the final path, the one that led to the first big cardiac diagnosis, came in the fall of 2006. A friend had been visiting with her baby, who had been oozing green snot and gave Sammi a cold which had landed her in the hospital. Our pediatrician — a wonderful doctor who has still never, to this day, called me anything but “mom” — suggested we take Sammi back to see the otolaryngologist who had diagnosed her at 6 weeks with laryngomalacia. Freshly home from the hospital, I called that practice and waited on hold, nursing a dozing Sammi in my lap.

When I got the advanced practice nurse on the phone, I explained the story to that point: diagnosed with laryngomalacia at 6 weeks, multiple hospitalizations for respiratory infections, low oxygen saturation, chest retractions, very tiny for her age, wet-sounding breathing, and me feeling nervous and suspicious about her age and her reactions to colds.

“Sorry, mom,” she said, “we can’t really get her in to see anyone until November.”

“November?,” I asked, shifting Sammi up to my shoulder to burp her, “That’s two months away! That’s really the soonest?”

“Yes,” she said, “I’m so sorry. You can keep calling and see if anything opens up.”

I sighed, “Ok, I’ll take the first available in November.”

The nurse paused, “Is there static on this line?”

“Oh,” I said, moving Sammi back down to my lap, facing down, “No, sorry. That’s my baby. She breathes like that after she nurses. It’s loud.”

“That’s your baby?” the nurse asked, quietly.

I said yes.

“Can I hear that again, mom?” she asked.

“Sure,” I said, suddenly both frightened and hopeful. I picked Sammi up to a seated position on my lap and held the phone near her mouth. She rasped and gurgled as always. I brought the phone back to my ear. “Was that enough?”

“Yes,” she answered. “I’m going to get her in this week. Can she come in this week?”

We could. Mom and baby could come in that week, and did, that week and countless other weeks, over and over to that children’s hospital to see that and many other specialists. In all that time, only one doctor would ever call me and my husband by our names. It seems a small thing — and it was, in comparison to the quality care Sammi received — but dismissing me as anything but the next in the series of moms, the role and not the person, that made it harder.

Few medical professionals ever really saw me. They looked right through me — I became a ride back and forth to the doctor, a reporter of facts, a dispenser of medication, a cook for whatever medically restrictive diet Sammi would come to be on over the years. I was lower-case mom, and I resented it, even as I put that resentment aside in the name of answers and treatments.

It doesn’t have to be this way. I’ve communicated with many other parents of chronically ill children — or even perfectly healthy children — who have pleasant, personable relationships with their children’s doctors. Specialists seem less friendly, with surgeons the least likely to know even their patients’ names. This doesn’t make them bad doctors, and I’m willing to admit that it may be this detachment that allows them to get through years and years of what would otherwise be painful encounters with frightened human beings in pain. Disassociate, and what they’re left with are a list of problems to solve, not lives to improve.

Funny how that works, isn’t it? I would come to learn that lesson by osmosis.

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