Craniosynostosis (My First Blog Experience)

Del Boca Vista (Mica)
four days old
October 2008

I remember very little from the first year of preemie twin motherhood (three kids in 17 months… zoiks!). I remember kangarooing our preemies every day in the NICU and navigating traffic to visit the babies in downtown Philly the day after the Phillies won the World Series. I remember reading them David Sedaris in their isolettes in order to acclimate them to dysfunctional family life, and I remember strapping their heart monitors on my back and the baby carrier on my front to schlep them through the neighborhood. I also remember my first blog experience.

Reid and Mica
She is not digging his look.
January 2009

I’d brought the twins to their pediatrician for their two month check-up. It was so exciting. We were at their official due date, and Mica had doubled in size! And his sister wasn’t far behind. But I had questions: about Mica’s crocodile-skin eczema, about their huge herniated belly buttons which would fart when you pushed on them, about Mica’s balls, which looked and felt like a walnut (a single, hard walnut, mind you), and oddly, about Mica’s head. Since they were born, he was the one whose parentage I questioned. I thought he’d been switched at birth. Seriously. We called him “Del Boca Vista” because he looked like a little old Russian-Italian man who had retired to Miami for the margaritas and overly-tan older women. And we’re not Russian. Or Italian.

The pediatrician gave me one of those looks. His head? His head looks fine. But she also put on her “game” face and asked me to tell her more.

I began, “It’s just that with ‘my people’ the widest point of everyone’s head in the back is high up, like they’re shaped like a square peg that narrows at the bottom. He’s shaped like an aerodynamic bullet pointing at you.” She looked at Del Boca Vista again, shrugged and ordered an x-ray. (Also, she sent me to the urologist.)

So I dragged him to Children’s Hospital and got the x-ray, fretting about gamma rays or whatever it is in the x-ray that will fry my poor son’s walnut testicles, all because I was feeling neurotic about the way his head looked. The pediatrician called me that night. “Nothing conclusive, but maybe something.” She scheduled a CAT scan for two days later. And I scribbled down “sutures” and “craniosynostosis” and then poured myself a glass of wine.

And then I started googling. I do not recommend googling image on this one, folks.

It was a horror show. It seemed most of the photos were from the 60’s, when foundling children, orphans and the destitute would be sent in for slightly circus-like, close-up black and white photos of deformities (this observation, by the way, coming from a person whose brother was actually in those type of medical-school-circus photos.)

More wine, please.

And then I came upon a blog: more like a page of diary entries from a Mom to inform the extended family about what was going on. There was this beautiful little tow-headed girl with ringlets. Until you scrolled down and saw her face so swollen her ears turned outside in. Also, she wore a helmet in some photos. Also there were bandages. And blood. More blood than I expected to see in a family blog, actually. Were the cousins seeing this?! The Mom’s entries were worried, then prayerful, then optimistic and in the end, fine. Her little girl was fine.

Mica, post-op
This is NOT the grisly photo.
February 2009

Four weeks later, exactly five years ago today,  it was us in the hospital with Mica’s face swollen beyond recognition and his ears turned outside in. Right before surgery every terrible made-for-TV-movie possibility ran through our heads. But when they wheeled him into his room at Children’s Hospital of Philadelphia post-op with his head as broad as Stewie from the Family Guy and bruised eyes swollen closed, I clapped my hands together. “Now that’s my son! He looks just like his brother!” The nurse appeared nonplussed.

Reid and Mica, post-op
She’s liking the new look.
February 2009

We were sent home three days after surgery with over one hundred stitches in this horrible zig-zag from ear to ear across the top of his head. He’d also had those walnut-balls worked on to fix a hernia and hydrocele, which left two small scars where they’d glued him closed, which, relative to the Franken-scar on his head seemed like small peanuts, as it were.

Reid and Mica
She’s LOVING the new look.
February 2009

The grisly headband though oozed and scabbed. They didn’t give us gauze, or Neosporin. Or a Band-Aid. No helmet, not much advice. Later when we moved to Massachusetts, we got the helmets (turned out his sister’s head was oddly asymmetrical as well) and Mica later also got a diagnosis of torticollis (a lopsided post for another day.) But it really was fine. He’s an adorable nerd with the face of an angel. We would have loved his Del Boca Vista self no matter, but in the end, we have no regrets.

Reid and Mica
Helmets
September 2009

One of the many take-aways from all this is that I realized that it helps to have someone else say they’ve been there, too: not too much advice and just enough information radiating from across the cosmos in the form of a blog, bolstered appropriately by a glass of wine or two, propelled me calmly forward. It seems at times the gentle pat on the shoulder from one who has gone before us is all we need.

Mica and Reid
Good-looking kids, am I right?
Fall 2013

[It’s amazing how far we’ve come, that first blog experience and early motherhood trials to now. Thank you for reading, thank you WordPress for Freshly Pressed last week, and thank goodness they’re all out of diapers… mostly.]