Becoming Amazing

sammi chewing on my pantsWith the diagnosis and all the accompanying realizations about why the first year of Sammi’s life had been what it was came a less obvious change in my life as a mother:

I became amazing.

In the span of one bronchoscopy — the real thing, the right test that showed us that her airway was 70% constricted — I went from that crazy, unhinged, unreasonable mother at whom everyone shook their head to the heroine of my family. My stubborn insistence on nursing her past her first birthday became a gift all acknowledged as selfless and stroke of genius. My willingness to hold her when she cried, carry her in a sling against my chest, sing to her and not utterly fall to pieces at the news of her upcoming cardiac surgery — all of these were held up as Brilliant Motherhood Personified.

Just look at her. She’s an incredible mother.

I felt like grabbing everyone who said that by the shoulders and shaking them, not just then but for years to come, through all of the followups and complications and all of the diagnoses and procedures, and saying “WHAT. IS. MY. OTHER. CHOICE?” Truly, I have never understood this statement, kind-hearted and well-intentioned as it is. It’s a statement that claims there is something magical about a mother who does the right thing for her child; there is something truly special about a mother who listens to her instincts; there is something miraculous about a mother who puts her foot down and says “I will not stand for my child’s discomfort a moment longer.”

Truly, that mother is all around us:

She is saying “no” to homework for her sensitive eight-year-old.

She is walking away with her back turned from her kindergartener who is sobbing, knowing that her presence only makes him cry harder and that he’ll have a great day in his classroom once she’s gone.

She is pushing the pediatrician to look in her toddler’s ears just once more because she knows there’s an infection from the way his nose is running.

She is feeding her six year old the same chicken nuggets and carrot sticks every night because dinner is not the battle on which she wants to base their relationship.

And she is me, standing in a hospital room with four-month-old Sammi, who is screaming and screaming against my chest, IV under a splint in one arm, unable to nurse because her breathing is too fast. She is me, begging the nurse to do something, knowing this is not how Sammi cries, knowing that being held and sung to is always enough. She is me, shocked beyond words at the suggestion by that nurse that Sammi’s pained, hysterical wailing could be soothed by a Baby Einstein video, shocked and stunned that the nurse would shake her finger at me and tell me that I should know by now that babies cry sometimes and we don’t always know why.

She is me, four hours and a nursing shift change later, drenched in sweat and holding Sammi in the crook of my arm in a hospital bed, both of us deeply asleep after the new nurse discovered that Sammi’s IV had infiltrated the tissue of her arm, filling her skin with IV fluid from the tips of her fingers all the way to her armpit. With the IV removed, the screaming had stopped, and Sammi and I had collapsed, utterly exhausted, into that bed to sleep, pressed into each other for the rest of the night.

I was an amazing mother when I was preparing and getting Sammi through every surgery, but I was an amazing mother like all other amazing mothers every time I listened to that voice in me that told me something was wrong. That’s not amazing, really. That is what motherhood requires of us.

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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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Hospital Bag 101

shower headThere is an altogether different quality to the time spent in an evening with a baby whose breathing is compromised. Friends with asthmatic and croup-susceptible children tell me that this slowed-down, stretched chronology is the same for them, with details changed but the timeline largely unshakeable. I remember, as a little girl, waking in the night to find my mother, dressed in pajamas and a terrycloth robe, sitting on the closed toilet lid with my wheezing baby brother, the shower running so hot that a soft rain would fall from the dripping ceiling. He was a croupy toddler. My Sammi was less easily categorized.

Diagnosed with laryngomalacia at 6 weeks old, all we knew was that tissue at the base of her voicebox was floppy. Her gurgling was never cute. It meant fluid was collecting there, in the folds of her loose larynx, and germs would find a happy home in the never-clear, always warm and moist soft tissue just below her throat. During a respiratory infection — others call them “colds” — you could hear this eleven-pound baby breathing from three rooms away.

As a “cold” took hold of my baby, nursing became a fight between air and food. Eat or breathe? At three months, at four months, at five months, at thirteen months, those were her choices.

Dictates of the evening:

9pm: The sound of her breathing would be so loud that we would need to turn up the television if she was in the room.

9:15pm: Nursing her at bedtime, I would watch her chest, right between the ribs, for signs it was sinking in, pulling toward the back. Similarly, I could see the space below her chin, where the neck meets the chest, was doing the same thing. It was like she was breathing in reverse, someone pulling air out of her like a vacuum, making her concave.

9:50pm: Gently, so gently, so slowly and quietly and carefully, I would lay the sleeping, wheezing, whistling baby in her crib.

10:00pm: Hovering on the edge of the chair in front of the computer, I would google “wheezing in baby,” “baby pneumonia,” “what to do when your baby isn’t breathing right.”

10:20pm: Heart sinking, I would pick up the crying baby from her crib and repeat all the steps from 9:15pm, feeling my pulse quicken and starting to make mental lists.

11:00pm: Concerned for the rhythm of her breath, and remembering my mother those many years ago, I would run a hot shower. Hold her on my lap in the bathroom with steam curling around us both, I would wrap a curl of her soft hair around my finger and watch her eyes as they watched me, fluttered closed, and startled open, over and over.

11:30pm: When the indentations in her neck and chest became big enough for shadows, David would hold her while I packed a bag for the ER.

  1. Extra baby pajamas
  2. Bottles
  3. Breast pump
  4. Extra baby blankets
  5. Baby sling
  6. Sweatshirt, sweatpants, socks, t-shirt for me
  7. Bag of granola
  8. Apple
  9. Book
  10. Phone & charger

11:35pm: I would buckle her into her car seat and open all the car windows. Yes, even in December.

11:40-11:50pm: I drove with one hand on the wheel, one hand shaking the carseat, yelling “Sammi?! Sammi sunshine?! You ok?” until she’d cry, proving she was breathing. Repeat. Repeat. Repeat. It was a ten minute drive, or less when I was really scared, and I would pull over more than once to check her breath.

I didn’t offer myself the luxurious option of loving her during any early part of the night. Love is frivolous. Love is weak and emotional. That was why I never hated taking her to the hospital; in the hospital, I could love her. In the hospital, it was always someone else’s job to keep her alive — other people were more qualified than I, other people knew more about sick babies than I did. Once she was in my lap on a bed in the emergency room, nebulizer mask on her face blowing steroids into her lungs, eyes drooping as finding oxygen became less work, only then would I find myself compelled to kiss her on the top of her sweaty head.

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