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.

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

“As long as it’s a healthy baby.”

How many times have we heard that earnest, utterly truthful statement from expectant parents who are asked if they want a boy or a girl? When two people say that all they want is a healthy baby, that is usually the extent of the wanting. Unless they themselves suffer from a chronic illness, parents who say this have an image in their heads of ten perfect fingers and toes, dappled cheeks and smooth skin and a lifetime of worries which, if examined closely, reveal themselves to be silly, fussy, and unrealistic. Few parents actually think through the litany of things which could go wrong. Few have reason.

Trite as it sounds, that was me, nine and a half years ago, waiting for my second daughter to be born. Grateful for a largely uncomplicated pregnancy, holding the pudgy hand of my totally healthy preschooler, I felt all the right things at all the right times. Like a made-for-tv movie, my cliche of a sweet life could have been shot with forboding music layered over the sunshine of those mid-summer days at the end of my pregnancy. As my husband and I folded laundry in the last week before Sammi was born, her big sister Ronni sleeping peacefully down the hall, we joked about how fleeting these quiet moments would become.

If you watched the movie in reverse, that would be a sick joke.

Sammi was born with her life force ahead of her, slapping us across the face over and over again, an unending warning against complacency and certainty and hubris. Life is never the same for people after they have children, but this was something far more than the loss of date nights and the thickening of waistlines. Sammi’s confounding, fluctuating ill health began hours before she was born and seldom let up. As we took on new identities as medical advocates and amateur diagnosticians, we were not given leave to lay down the mantle of parents. Every need — normal or otherwise —  required attending-to, and unlike diseases with clear diagnostic criteria, her illnesses were always idiopathic: not quite exactly like this thing, not quite exactly following that course.

She wasn’t a healthy baby.

Or a healthy toddler. Or preschooler. Or gradeschooler.

So what now? Now I write this blog — for me, hit over and over again in a fight to parent my children according to my instincts, and for you, who may be where I was and have been: alone in the dark, searching for someone who understood. If I understand even a piece of what you are experiencing, and if you’re anything like me, I’ll be glad to know you. I’ll lend words to this life, this deeply-felt, no-coasting life, this life without a healthy baby. Not everyone knows what that means, but I do.

sammi appreciating art

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather