Part 1 of 2 Nine years ago today 9-10

At six days old, our newborn son Hayden went in for the first of a handful of procedures, an attempt to enable him to breathe and eat on his own so we could one day take him home from the hospital. But because of our son's unusual anatomy, at the pre-op broncoscopy, the scope went through the back of his esophagus, risking infection of his heart and lungs with stomach acid. 

 

I was in McDonald's having a milkshake when this happened. I'd been sitting in the waiting area with all the other parents whose kids were in surgery, and I'd heard the white-haired nurse inform a Jamaican couple that their daughter's open heart surgery had begun. 

"Ah, she be slice, then," the father nodded, matter of fact, while the mother knitted beside him and I'd thought to myself, open heart surgery! And they were so calm! How come my baby was going in for a tongue-lip adhesion, something comparatively small, and I couldn't sit still?

Things are going to be fine! I told myself, and decided I needed to go have a milkshake to calm down. 

The CHOP poster outside the hospital McDonalds said THERE IS NO SUCH THING AS MINOR SURGERY WHEN IT IS YOUR CHILD.

So it was okay for me to worry, normal, but this was minor. They'd wheel him back to the NICU and we'd watch and see how his oxygen sats were, and maybe do a trial extubation later in the week. If this didn't work, there were two more big guns in our arsenal: a tracheotomy like ENT wanted, or jaw distraction, breaking his bones and inserting metal bars with medieval cranks to extend the lower half of his face over the next four months, plastic surgery's first choice.

We'd chosen the least invasive route, willing to try and see how it went, save the big guns for later. 

When I came back to the surgery floor, Jon was pacing; they had been looking for me. Doctors took us into a small closet, away from the other parents, with a chair, and a plastic couch, and two fake plants, and a painting of the ocean under flickery flourescent lights. 

There were a lot of apologies and backtracking. We wanted to see him, but he wasn't out of surgery. Obviously they'd aborted the other procedure. I was still walking everywhere with a pillow over my stomach, only six days post C-section, and I wiped my tears on my pillow, which smelled like home.

They were very, very sorry, they said.

When we saw Hayden back in the NICU, he was in obvious, extreme pain, writhing and arching, unable to cry around his intubation.

One of the doctors came to his isolette and rattled off the list of antibiotics he was being put on, and I wished for pen and paper, but at the same time, knew that it didn't mean anything, that knowing their names, looking them up on the internet, wouldn't change anything, because he said it then: "Either he'll make it to the end of the week, or he won't." 

We drove home that evening under a sky that was gunmetal gray, heavy with humidity, on Broad Street with all the traffic lights, which I hate. That was the night J told me carefully, that he was concerned Hayden might not be ours to keep. 

It happened then: six days of ambivalence, of feeling guiltily disconnected from this poor little creature in the hospital was sandblasted off me by sheer terror. Finally, I wanted this baby to live, to grow up, to be mine.

(For PART TWO, click HERE)