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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It’s Hard Until It’s Harder

When I had my first daughter, Ronni, everything was new and surprising, just as it is with any brand new parent. We took her to the pediatrician at 10 weeks old because she was pulling on her ears, which we thought meant she had an ear infection. He was avuncular and had seen it all. He humored us by looking at our round-cheeked, dimpled baby girl, peering into her ears, and then telling us casually that she was pulling on her ears because she had discovered that she had ears.

Humbled, and fighting my own demons that told me everyone knew better than I did, I took her home and treated her like a healthy, normal baby. Luckily, she was.

Three years later, Sammi’s birth was a shocking, week-late affair involving big terms like “intrauterine growth retardation” and an unplanned caesarean section. She came home, all four pounds and eleven ounces of her, and we expected her to be little but healthy. No one had seen anything wrong with her once her blood sugar stabilized. Because her sister had yet to experience any ailments beyond pink-eye, we had no sense of what a normal respiratory infection in a baby should sound like.

Even so, something continued to haunt me about her. She was a relatively easy newborn, but there were things that seemed off. I was exhausted, but that hadn’t stopped me after Ronni’s birth from falling instantly and deeply in love with her. Sammi seemed…off. Not right. I couldn’t put my finger on it. I loved her, but it felt instinctual rather than emotional. I was incredibly ashamed, and tried not to think about it.

One day I took her to the pediatrician because she was breathing very quickly. I’d consulted our dusty copy of Dr. Spock, and she was breathing about a third more quickly than she was supposed to. And she was asleep. The doctor declared it “rapid breathing of the newborn” and sent me home.

Ronni, age 3, started calling Sammi “baby snort-squiggle,” because she squirmed and spluttered and breathed like someone with a constant cold. At Sammi’s one-month checkup, her pediatrician offhandedly mentioned “tracheomalacia.” I made him write it down.

“Oh, you’re going to go home and look it up on the internet?,” he said to me with a wink. “Sure. Go ahead. It’s nothing. She’ll grow out of it.”

I looked it up. It worried me.

Against the advice of our pediatrician, we took Sammi to see a pediatric otolaryngologist (also known as an ear, nose, and throat doctor) at the local children’s hospital. I’d been following the journey of a parent on the Mothering.com forum, a woman whose daughter wasn’t diagnosed with severe reflux until the mother took the drastic step of videotaping her baby nursing. The video showed clearly that the baby would arch her back wildly by the end of a feeding, a known symptom of this type of reflux. That video moved that baby’s diagnosis forward far more than any pleas from her mother.

Taking a cue from that experience, David and I recorded the sound of Sammi’s breathing before, during, and after a feeding. After any feeding, she sounded like Darth Vader. We played it for the otolaryngologist, who thanked us and insisted on a laryngoscopy. At the time, I thought watching my six week old baby have a laryngoscopy was the worst thing I’d ever see. In the years that followed, I would find that I was wrong.

The otolaryngologist diagnosed Sammi with GERD (reflux), and also not tracheomalacia but laryngomalacia.

“She’ll outgrow it,” he said, “but she’ll have a much harder time with colds until she does.”

Those words, and that diagnosis, were as prophetic as they were incomplete. There was much more to come, but it was my first tiny moment of validation. I had never needed to guard Ronni fiercely from dismissal by a doctor — she was four before she even had her first dose of antibiotics — but I knew, in my prehistoric mother brain, that our winking pediatrician was not taking me seriously.

Instinct is powerful. I learned to respect it, one doctor at a time.

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Look at My Breasts

Something went very, very wrong at some point in my pregnancy with Sammi. We’ll never know what happened, exactly, but I had a moment around the seventh month when I believe the message was delivered.

David and I were lying in bed, reading. It had been — and continued to be — an easy pregnancy, relatively speaking. My only complaints were early queasiness that never quite went anywhere, and a respiratory infection that lead to a round of antibiotics. I had a normal amount of weight gain, baby growth, and everything else was going as expected. Suddenly, for absolutely no reason, I had a feeling of total dread.

“David,” I said, “I think there is something really wrong with this baby.”

“Why?,” he answered.

I couldn’t tell him, but I made him get down to the base of my belly and speak loudly and deeply, trying to get the baby to move. It took a few minutes, and a cold glass of water, but the baby did squirm or kick, and my fear passed. I asked David if he had any premonitions like mine, and he didn’t.

Once Sammi was born after a day of frightening warnings — she was late but tiny, her heart was strong but decelerating, she was proportionate but inexplicably undersized — I found myself shocked to be lying on a bed in a recovery room, abdomen stapled shut, labor abandoned for c-section, pumped full of drugs and paralyzed by an epidural. A few moments later, someone wheeled a plastic tub on a cart into the room, and I peered over my useless knees to see the baby in the tub.

She was kicking legs and wires and tubes. I couldn’t see her face. I’d had one kiss in the operating room.

Thankfully, Sharon, the birth attendant I hadn’t used, was waiting with me. She saw me strain to look at the baby and said, “Have you nursed her yet?”

“No,” I said. “I haven’t even held her. Am I allowed?”

“She’s your baby,” Sharon said, and strode purposefully to the tub, picked up the baby, and brought her to me.

I held her, all four-pounds-eleven-ounces, and put her to my breast.

She was ferocious. She went at my nipple with vigor and power and purpose. The very first suckle made me gasp, and she didn’t stop until a nurse pried her away and took her to the nursery, having discovered a blood sugar problem that needed monitoring. I would spend the next eight days fighting to nurse her.

After that, I would go on to nurse her for nearly three years, through food refusal and ear infections and cardiac surgery, through toddler tantrums and night terrors and pneumonia, through hideous reflux and tonsillectomies and naps. I nursed her far longer than I ever wanted to, and far more often, mostly because it kept her alive and but also because it kept me vital. When she was so scary to me that I couldn’t bring myself to connect, when I could not make her healthy, when I could not feed her any other way, I could nurse her. I could hold her and nurse her and feel useful and helpful not because I was stubbornly clinging to some ideology about breastfeeding but because it really did work. For years, it was the only thing that consistently worked to keep her growing.

So, look at my breasts.baby in a sling

Really, you have my permission. Admire them, not for their shape or their sexuality, but as the most reliable medicine I had. Admire that they took a very sick baby and grew her from four-pounds-eleven-ounces to twenty-three-pounds-twelve-ounces. Admire that the body to which they were attached kept going while those breasts nursed a baby ten, fifteen, twenty-two times a day.

Something bad happened in my uterus. Maybe it was around the seventh month, or maybe that was my body realizing what was already wrong, or maybe that was normal pregnancy jitters. But nothing bad happened to my breasts. They soldiered on, they ran the marathon over and over, carrying a teammate as they crossed the finish line.

It’s ok. Admire my breasts. I sure do.

 

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