There Was Joy

rear-view-mirror

There are so many things I had to refuse her.

I was newly a mother of two when a doctor – a kind doctor, a thoughtful doctor – told me that my new daughter would almost certainly end up in the hospital with every respiratory infection she got. Not a great idea, he said about twice-a-week daycare. Probably not, he said about baby-and-parent music classes. No, I don’t think so, was his answer to my hopeful questions about baby swimming, a smaller daycare, a playgroup. After two hospitalizations in her first five months, I believed him.

Through that first winter watched through front windows into an empty courtyard or through car windows into big sister’s preschool, my new daughter and I eyed the world with suspicion: me because it contained too many germs and her because nothing in it made her feel quite right. There was no sleep, no break, no time apart for the two of us to learn the beauty of missing each other and being reunited. There was just us, with the world outside the window a mystery.

The winter turned into years, isolated and treading water. Continue Reading…

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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…

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12 Questions I Wish I’d Asked My Daughter’s Doctors Before Every Outpatient Procedure

notepadNo matter how many times I sent my daughter into an operating or medical procedure space, it was always unnerving. Though eventually I knew what to expect — and so did she — there was always something I forgot to ask. Sometimes, even if I thought I’d heard the answer enough times that I didn’t need to ask it again, a new anesthesiologist or nurse followed a slightly different protocol, and I’d be taken off guard. Because of that, there were questions I wish, in retrospect, that I’d had the presence of mind to ask each and every time.

If you’re taking your child in for outpatient surgery or an invasive test, here are some things you might want to ask – and write down the answers in a notebook you can keep handy. Continue Reading…

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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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Not Knowing and Knowing Are Tied for Worst

The otolaryngologist (who would prove to always know best, every damn time) warned us about colds for Sammi, but we didn’t know what that meant. As a baby, Ronni had never had a cold. Not ever. We had no idea how a baby with a cold should sound or look. When we left that doctor’s office with a diagnosis, Sammi was 6 weeks old and I was on maternity leave. When I went back to work six weeks later, she still sounded like Darth Vader, but it was her normal.

I went back to work on a Monday, leaving her at day care for the first time. My plan was to work from home two days a week and have our girls home with a sitter one day a week, leaving them in day care just two days per week. I was home Tuesday. They went to daycare Wednesday. The sitter came on Thursday. I came home on Thursday evening and could hear Sammi’s breathing when the door opened, and she was three rooms away.

She hadn’t wanted to take the afternoon bottle I’d left with the sitter. She was breathing louder, and faster, Darth Vader on a treadmill. She smelled like spit-up, though she had not actually spit up anything. After several hours of worrying, our fear overcame my discomfort with asking for help.

I knocked on the door of our neighbor, a nurse practitioner. When she answered, I hung my head and asked, “Can you come over and tell us if we should take Sammi to the ER?”

She showed us how to recognize chest retractions. We went to the ER. It was my first course in Hospital Bag 101.

Now I knew a word I could use, a powerful sword to brandish at triage nurses. It gave me the power, every time I had to take her to the ER, to command a position at the front of the line, a quick path to the oxygen mask and the steroid shot. It got the job done: “I have a three month old baby whose chest is retracting. We need to see a doctor right away.”

nebulizer mask“I have a four month old baby whose chest is retracting.”

“I have a five month old baby whose chest is retracting.”

“I have a one year old baby whose chest is retracting.”

What I didn’t have was the knowledge that a bronchoscopy and a laryngoscopy were two different tests. The question we got in the ER, time after time, was “has she been scoped?” I said yes, but that wasn’t what they meant, and the difference would turn out to be monumentally important.

What I knew made everything scary.

What I didn’t know made everything scary, too.

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