jen groeber: mama art

4 kids in 3 years: reflections on motherhood, art and life.

Craniosynostosis (My First Blog Experience)

del.boca.vista.10.09

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.

surgery.before

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.surgery

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.mica.surgery.laugh

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.

surgery.after

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.mica.9.29.09.helmets.pumpkin

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.

IMG_7228

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.]

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29 comments on “Craniosynostosis (My First Blog Experience)

  1. talesfromthemotherland
    February 4, 2014

    Wow. Just wow. I happen to know what craniosynostosis, but wild to see what you went through! I love that you have such a great sense of humor through it all. Some day, when your kids are a little older, trust me, your son will call you on the walnut testicles bit. 😉

    • jgroeber
      February 4, 2014

      What a random thing though, right? Thank goodness I studied skull shapes in a portrait sculpture class in college. Seriously.
      Mica is just the kid to rock the monster scar (my husband cuts his hair way too short!) and the walnut balls. He wore bright green skinny jeans today. We’ll see if he calls me out on it. (My six-year-old would totally call me out on it!)
      As always, you rock for reading!

  2. Julia Benjamin
    February 4, 2014

    As if motherhood isn’t hard enough. Glad you’re on the other side of this.

    • jgroeber
      February 4, 2014

      You know what’s funny? Knowing that this was relatively fixable, that we could schedule it and that it would be done and that we had one of three surgeons who were cowboy-rock-stars at this made it really okay for me. My childhood more than prepared me for it. I don’t sweat needles for my kids either. There are such bigger, badder demons.
      Although I distinctly remember saying to my husband right before the surgery that I just want it to be two weeks from now. Because I knew it would be fine, but I suspected it might not be fun.

      • Julia Benjamin
        February 5, 2014

        I admire you’re candidness here and I’m sure it will bring comfort to someone desperately searching the internet late one night. You’re children are beautiful.

  3. upsidediy
    February 4, 2014

    Beautiful looking kids!

    • jgroeber
      February 5, 2014

      Thank you! And while I love his beautiful noggin’, I have to say, it’s his totally goofball personality that gets me every time. Thanks for reading!

      • upsidediy
        February 5, 2014

        I have a goofball too. Never a dull moment here. My goofball is 22! 😛

  4. candybauer
    February 5, 2014

    so cute…God Bless

    • jgroeber
      February 5, 2014

      Thank you for reading and commenting. It’s amazing how it all worked out in the end. He has an adorable head now, am I right? 🙂

  5. RFL
    February 5, 2014

    So intense, Jen. Your kids are beautiful, and those stitches were scary. We went through the helmet stage here too, but nothing like this. Another great post!

    • jgroeber
      February 5, 2014

      LOVED the helmets. Who knew they made baby helmets?! And the truly scary stitches pictures were not fit for the blogosphere. Although they crack my kids up.
      Thanks for reading!

  6. jmlindy422
    February 5, 2014

    Gorgeous kids and a great post.

    • jgroeber
      February 5, 2014

      Thanks for stopping by! We think they’re pretty cute, but we thought they were cute when they weighed less than 4 lbs (and they weren’t very cute at all then!)

  7. adventureswiththepooh
    February 5, 2014

    How you kept your cool and your sense of humor through all of this awes me. Your kids are beautiful!

    • jgroeber
      February 10, 2014

      You awe me, W! If I learned nothing else from my mother, the train is sort of on the tracks much of the time. You either find something funny in the ride, or you’re stuck in the gloom. And thanks for the compliment. Your Pooh is a little knock-out as well!

  8. Kelly
    February 5, 2014

    Damn, man… we have no idea what we’ve signed up for, huh? And then once we know we do it again because… why? Because wine? Because sloppy kisses? Beats me. Thanks for sharing this part of your story. Bet you never thought you’d tell this story in this few words…. Crazy the things we come out the other side of …

    • jgroeber
      February 10, 2014

      Ha! I love that you acknowledged the word count. I realized in re-reading that when I cut away at the story to make it readably short, I left out explaining what craniosynostosis is!! Too funny. So clearly, it’s a thing where you cut open your child’s skull. But for what? To count the brain cells?! To implant tiny horn knobs on his forehead?! Ack! (Or to open up the normally elastic sutures that had prematurely fused on his skull? Oh, yes. That would be it.)
      Definitely no idea what we signed up for!
      And yes to wine and sloppy kisses!

  9. HBG
    February 5, 2014

    I remember the helmet days! Sigh. It seems like just yesterday or maybe a million years ago. Next helmet adventure will be when your kids decide to play hockey or football, right?

    • jgroeber
      February 10, 2014

      Zoiks to helmets! those stinky things…
      And we may have to avoid football and hockey. As I like to point out whenever the kids fall down the steps mostly on their heads, “Do you know how much WORK went into getting your heads into that shape?! And now you do THIS?!”
      Heehee.

  10. Burns the Fire
    February 6, 2014

    I love how you roll. Great attitude and beautiful kids, no doubt, inside and out.

    • jgroeber
      February 10, 2014

      Aw, thanks!
      And if by “how you roll” you mean unshowered, flanked by four awkwardly clad, slightly odd kids, all humming Thunder Road, then I say, “Thank you. Thank you very much.”

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  12. Margie S
    February 21, 2014

    Oh, the places we will go…with our kids. I am always amazed by the many places we, as parents, have gone and tentatively wait for those unchartered parental territories. Your children are beautiful!

  13. Winding road
    March 9, 2014

    Wow, that was quite an experience! And it sounds like you handled it all the way through so very calmly. Admirable. Your children are beautiful!

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  15. caroline7360
    August 26, 2015

    Hi. My son recently got diagnosed with Sagittal Craniosynostosis. We were wondering which procedure your son had. Did they take a strip of his skull or did they do a skull remodel? We are trying to decide between two doctors and these two procedures and are having difficulty coming to a decision. Thanks in advance for your help.

    • jgroeber
      August 28, 2015

      I think it was a remodel. Just a bunch of skull-snipping and a huge scar. He was four months old (two months adjusted for preemie) so it may have been an easier fix. I’ll follow up this comment with an email to you in case you have any more questions. I’m amazed every day how gorgeous his face is, I swear. And the scar is totally cool. It only shows when he gets a buzz cut.😊 Thanks for reading. So glad you found me.

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