Insides on the outside

flying through the air
in turbo-charged baby swing
instead of airplane

I don't think I've said this on the blog, but when Ike-a-saurus was born, he let out a cry, was whisked away for assessment, and a few minutes later the neonatologist came over to me. I was strapped to the operating table, wearing an oxygen mask, trying not to choke on my tears, and the doctor leaned over to me.

"Mrs. Roy?" he said slowly, making sure I was cognizant, gaining eye contact. "Mrs. Roy, I want you to know I am not worried about your baby dying."

And so there I was, splayed open on the operating table, after seconds, minutes, hours, days, weeks, months spent anticipating that very moment, it all had finally reached the point we had known would come. But we had not known when it would happen or with what outcome. So hearing the doctor say those words was probably one of the most defining moments of my life. All that terror and psychological torment for so long; all the not knowing, the never having any answers, the feeling of being a ticking time bomb for 8 excruciating weeks… it was suddenly over. And with those words I took the first reassuring breath I'd had in a long, long time.

We are almost 6 months from that day, and again I find myself in a place with no definitive answers. This noise Ike-a-surus is making sounds life-threatening. We were told that "babies who make this noise usually need to be intubated." But now, three weeks after the noise started, it is still terrible, yet he's still smiling. Some doctors are mystified, some confident. The confident ones are confident about different, opposite things. And I find myself with that feeling again – that sort of helpless "at the mercy of the universe" flailing around feeling.

So far this week Ike-a-saurus has been to the ENT, the pulminologist, the pediatrician, a second pedi-ENT, and has had a barium swallow rescheduled because the stupid COBRA doesn't kick in for another few days and I am not paying cash for that shit when it isn't absolutely necessary to have done right now. We know he has reflux.

The doctors have said everything from "it's laryngomalacia, he'll grow out of it." to "he needs a bronchoscopy and may have to go to Cincinnati for an airway reconstruction."

It's maddening and scary and exhausting and all the while he just gets noisier and noisier and I give myself stress-induced mastitis.

I think when I was laying on that operating table, guts splayed out for everyone to see, there was a part of me that didn't get sewn shut. A sort of frightened wound that can never be fully healed, except in that one second when the neonatologist was so sure, so blatant (if not eloquent) in his conviction.

It's a weird thing, but I find myself closing my eyes, remembering that moment in the OR. Remembering the dirty hand print on the ceiling (what?!), remembering how small the room was and how many people were in there, remembering the pushing and pulling and tugging on my body, remembering how it took every ounce of strength in my psyche to not go For Real Crazy while I was immobilized on that table, remembering the nurses counting tools to make sure nothing was left inside me.

I remember those moments and then I remember the words of the neonatologist and I wish I had a recording of him. I would play it when I get scared. I would just put it on a loop and listen to it on my ipod until we get through this laryngomalacia nonsense.

Today, the doctor said "he'll grow out of it. Further intervention is unnecessary unless he starts turning blue or losing weight." Not the most awesome words you want to hear, but by far not the worst.

So we'll listen to him squeak and honk and sound as if he's struggling for breath. But we'll watch his smiles and his fat little fingers and wait for him to outgrow this floppy larynx.

I'll trust that the doctor is right, even though I'm not convinced.

I've only been convinced by one doctor at one moment. It was a great and terrifying and blunt and welcome and confident moment.

I relive it everyday.

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8 thoughts on “Insides on the outside

  1. keep hanging onto that moment. What a powerful thing for him to say to you, and while I’m really sorry you have need of remembering it, I’m so glad you have it to remember. I hope that makes sense.
    (btw, AmyJ/BEG gave me your blog address….)

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  2. MY son squeaked like that too, for 2 years. It was a little quieter, but not much. I never worried because he was growing, and thriving. The doctors told me that it was a floppy trachea and that, by definition, he would outgrow it. He is 9.

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  3. I got your site from sonlight.
    Hang in there, I know it is very hard. My son was born at 35 weeks with a heart condition and immature lungs. He was intubated and in the NICU for 8 weeks. He still has issues with breathing, and his heart.
    Sometimes the things we have to do are no fun at all. But that is why they call us MOM !!!
    By the way, my Neonatologist said almost the very same thing to me. ” He is not going to die, but may be here a while.”

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