Mommy, I Ate Fat

riceccakesThe day my older daughter was born, I had been expecting a son. When my husband looked at the wriggling pink mass being lifted from between my legs, I called out to him, “Is it my little boy?”

“It’s a girl,” he said. “It’s a daughter.”

Lying there, on that bed, I realized two things at once: firstly, how deeply I must have been afraid of having daughters; and secondly, how happy I was to have one.

Three years later, I had another daughter after another pregnancy of being certain the child I was carrying was a boy. We did no gender-checking ultrasound with either child, but my intuition, I realize, must have remained blocked by that fear of raising girls. How, I wondered, can I make them less messed-up than me?  Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Two Years Later, Fury

twoyears

In a chair for the first time after her surgery

Yesterday was the two-year anniversary of the surgery that changed Sammi’s life.

This morning, in an effort to remember a particular detail of that time, I logged into the hospital’s patient information system. I clicked aimlessly, seeing everything with the eyes of experience and after-the-fact understanding. All these test results — why didn’t I read them in detail back then when they could have done something more than remind me of how late I put my research skills to work?

The real answer is that I didn’t know how to access charts, back then. They weren’t online. They weren’t sent to us by mail. All we got was the occasional placating phone call. Oh, and a stack of bills.

Now here, in the charts, are all the comments and clues that make sense in retrospect. Like re-reading a mystery after I already know who the killer was, I am seeing the telltale signs in notes on test results and procedures: muscle visible in her esophagus, tonsils visible on a chest x-ray, no mention of her abnormal aortic arch on that first diagnostic endoscopy. The information was there for anyone to find: here is why she is always sick, here is why she cannot eat, here is why no doctor can explain her idiopathic results.

I am angry. I am furious. Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Handouts for Doctors

Have you read my chart?Over and over in my head, I dissect what went wrong with my advocacy for my daughter.

When she was just six weeks old, we pushed to have her raspy, gurgling breathing evaluated by an otolaryngologist even though her pediatrician said it was nothing. It wasn’t nothing; we were justified in our followup.

When she was a year old, the sound of milk rattling in her throat got us another appointment with the otolaryngologist, and even though the pediatrician didn’t think it was strange that our one-year-old would not eat solid food yet, the otolaryngologist took note. The fact that she would hold one-fourth of a blueberry in her cheek for hours rather than swallow it was a sign that her esophagus was so narrow that even that sliver of food was too irritating to pass through. It was a clue. Somehow, I’d known to tell someone, and it was part of the path to diagnosing her vascular ring.

When she was four, we’d dutifully tried to wean her from her reflux medications, then taken her to a gastroenterologist when she responded poorly. We’d said yes to the endoscopies, accepted the diagnosis of eosinophilic esophagitis, and diligently followed the six food elimination protocol. We read labels, scoured our kitchen, protected her from potential allergens like fierce animal parents. We did everything they asked, and advocated for her emotional well-being in school and with friends.

We did everything we could have done except tell her doctors to read her chart. If we had thought to ask them, hey, do you think this esophagus problem could have anything at all to do with her aortic arch?, that might have been all we needed. Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Fragments and Money

fragmented winterBetween the December day when we received news of our daughter Sammi’s impending cardiac surgery and the surgery itself were nearly five fragmented, breath-holding months. During that time, life went on as usual: school, work, meals and concerts and the usual patterns of life with two children.

My days, already naturally broken into small chunks of varied activities, crumbled into bite-sized pieces of work and daily chores mixed with anxious Google searches and conversations over phone and email. In the autopilot that clicked on during repetitive activities like cooking or walking my children to school, I sometimes found myself unable to remember what had been happening in the previous ten minutes. How had I gotten to this corner? When did I add the onion to the pot?

Throughout, I was honest with friends and family about what was happening. Many had been with us for the Sammi’s entire medical journey. They had prayed and visualized a pink and smooth esophagus on each of her many endoscopy days. Some had arranged a spot in their pantry for a new, unused cutting board and disposable baking pans so that they could invite us for dinner during the hardest weeks of the six food elimination diet. These people were experiencing this with us, many of them nearly as deeply in love with Sammi as we were. They deserved to be in-the-know, and so I held very little back. We talked openly about the surgery and what it would entail; we shared whatever we knew and accepted their promises to hold us in their positive thoughts, whatever shape those took.

But some of them — more than a few of them — asked us the multimillion-dollar question: are you thinking about a lawsuit? Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

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…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather