A Test She Couldn’t Fail

glowheartWhen I was pregnant with my younger daughter, Sammi, I worked in an aging office suite with a highly-coveted tiny kitchenette. Other departments of the same non-profit had to go to the basement to retrieve and reheat their lunches, but our little corner of the building had a full-size refrigerator and a microwave.

That microwave must have been older than I was. In the years before having children, I often warmed my cold fingers in front of it as heat leaked out the seams in the door. Once I was pregnant, I wouldn’t even pass by the cubby where it rested if I knew someone was using it; I was afraid the radiation was seeping out with the heat, and I didn’t want to put my unborn child at risk of cancer before she was even born.

Then she was diagnosed with a rare congenital heart condition at the age of 13 months, and in addition to the chest x-ray she’d already had, she had to be put under general anesthesia so that her surgeon could get a clear picture of her vascular anatomy via computed tomography — also known as a CT scan. An IV allowed the flow of a contrast solution into her veins and arteries so that they would all light up in the scans. I sent her in — all sixteen pounds of her — and tried not to think about how much radiation she was absorbing. They needed those pictures. It was the only way to get them. Continue Reading…

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I Am Not a Fool, and Other Thoughts

hosesAfter ten endoscopies, a year of restricted diets, nearly six years of medication to block acid production in her stomach, diagnosis with an inflammatory disorder called eosinophilic esophagitis, and dozens of trips to gastroenterologists, my eight-year-old daughter slid under an x-ray machine, drank some barium, and lit up the screen with a reveal of her esophagus, kinked into utterly unnatural shapes. After the radiologist told me in a hushed voice that the indentations in her esophagus were coming from her aorta, snaking its way across the back of her body, I began to put all the pieces together on my own.

The esophagus is like a rubber hose stretched between two funnels —  mouth on one end and stomach on the other. For Sammi, on one side of that hose —  about a third of the way from the top — a firmer hose was pressing into it from the side, trying to make its way across. That was her aorta, arching down the right side of her body instead of the left, where most people’s aortic arch lives, because of a surgery she’d had to correct a double aortic arch as a baby. It partially succeeded in crossing, but when it met with too much resistance, it snaked down further and tried again, forcing Sammi’s esophagus to follow its path until that esophagus was shaped not like a long straight rubber tube but like a lightning bolt. Continue Reading…

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Holding Things

insideSammiBetween 2010 and 2013, between the ages of four and eight, my daughter Sammi had ten endoscopies. Each time, she fasted from dinner the night before until after her morning procedure. Each time, they held a gas mask over her face in the operating room until she fell asleep, and then, after escorting me out of the room, they inserted an IV with heavier anesthesia and fluids, took a blood sample, inserted a mouthpiece and fed a camera down into her esophagus. They took pictures and they took biopsies — tiny pieces of her esophagus to test for the presence of eosinophils, the white blood cells whose functions, according to Cincinnati Children’s Hospital, include

movement to inflamed areas, trapping substances, killing cells, antiparasitic and bactericidal activity, participating in immediate allergic reactions, and modulating inflammatory responses. 

Ten times. They did that to her ten times in just over three years. They did that because she was still experiencing the symptoms of GERD — also known as “reflux” — past the age that a child would normally outgrow it. We took her to a major children’s hospital gastroenterology practice, a practice in the same hospital that had corrected her cardiac issue when she was a baby. Keeping everything in the same hospital made sense to us, at the time. All the records would be together, we thought. There would be less repeating ourselves, far fewer requirements of us to remember dates and test results — all the information would be stored with her chart.

We believed in the power of information sharing among professionals, which was a mistake. 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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Vocabulary

artAll families I know develop — unconsciously — a vocabulary specific to them. This can include everything from pet names to invented foods to the life-long adoption of mispronunciations from toddlerhood. Being in a nuclear family — a new nuclear family, not the one in which we grew up — is, in many ways, like having a glorious lifetime membership in a club in which we got to make all the rules and invite in all the members ourselves. By nature, it is empowering for the adult.

The innocence of this family vocabulary can seem silly from the outside because, most of the time, these new words are like long-standing and elaborate inside jokes. We have words like that in our family, too. The exception, for us, is the word “urp.”

“Urp” is the word we invented to describe the sound Sammi made when she had what we assumed to be reflux. Babies with reflux are a known entity — the baby silently jostles his own torso up and then — sometimes also silently — a stream of spit-up drools out, to be wiped away by an ever-present burp cloth. Sometimes, this baby-reflux interferes with sleep and comfort and so the baby is given reflux medication. This was what happened to Sammi at six weeks old; her reflux was silent and, oddly, never resulted in spitting up. She constantly smelled like sour baby vomit, but it was on her breath and not making up to her mouth.

Her pediatrician put her on a reflux medication. It got changed once when she was around a year old, then again at two years old, when our efforts to take her off of it were met with the constant sound we named “Urp.” The pediatrician — and we — had expected her to grow out of it, as babies do, but whenever she stopped taking it, there it was again: “urp.” It was a gurgling sound, followed by a hard swallow and a series of coughs. It was unnerving.

When she got old enough to talk, we would sometimes ask her about it. We’d hear “urp” and ask if she was ok.

“Jus’ my cereal,” she’d chirp, going back to her toys.

“It’s jus’ my yogurt.”

“It’s my dinner in my mouth,” she’d say as we pulled her pajamas over her head.

It didn’t seem to bother her. Sometimes it was eight or ten times per day. She never vomited, she never complained of pain, she never woke up gagging. Still, we worried about it. We had her bed propped up on an angle, gave her first the antacids and then the proton pump inhibitors. The medicine made the sound less frequent than when she was off the medicine, but nothing truly made it stop.

Urp. Just my breakfast.

Urp. Just raspberries.

We asked ourselves constantly, is she urping more lately? Why is she still urping? She’s three. Shouldn’t she have outgrown this?

We worried. We were professional worriers. Her pediatrician, both perplexed and long-accustomed to the mysteries of childhood illness and behavior, just kept telling us to wait a few more months and try again to take her off the medication. We repeated that cycle for years.

Urp. Just noodles.

Urp. Just water.

Just wait. So we waited.

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