Tuesday, June 5, 2012

Let The Waves Roll Over You

Lis rolls on her side, but refuses to go further.  I’m concerned she can’t; Vor isn’t, and thinks she hates rolling over.  Since our doctor made that frown, I have been obsessed with the idea that her unwillingness or inability to roll over is somehow connected to this brain/skull thing.


We huff and we puff as we hoof it from the parking garage, not quite sure where we are going on this vast combination of a medical and university campus.  We make wrong turns, and push a whinny Lis who just wants her damn bottle, now, around.  We find it—Riley Children’s Hospital.  Bonus points for it being next to the parking garage that we parked in.  Minus points for us not being able to figure that out.

We wind our way through the hospital and the elevators—at least it is bright and friendly, like a children’s hospital should be.  It doesn’t have that hospital decay smell.  This is going to be okay, I tell myself.  All okay.  All alright.  Lis falls asleep in her stroller, contented, while we wait.

We get called back—we weigh her, measure her height, measure her head.  She looks awesome, and smiles her toothless grin for the nurse.  All the nurses are instantly charmed—Lis is a really awesome, happy, cheerful baby.  I know I am biased.  But she is cute.  She has these massive blue eyes and these huge cheeks that has even the grumpiest person leaning in closer to just touch those cheeks.  Before I slap their unknown germy hands away, that is. 

The nurse comes in—she is super friendly and efficient.  She runs her hands over Lis’s soft spot, and I see the same brief flash in her eyes that I saw on Lis’s pediatrician’s face.  I know.  It’s not there.  And when she says classic shape regarding Lis’s head, I know she doesn’t mean classically normal. 

We go to the CT scan.  I feel sick, sending my baby (MY BABY) through a scan that exposes her to radiation, but we have to know.  We need exact pictures.  It makes a difference in what we do.  Vor stays with her during the scan, while I pace the hallway.  I see children younger than Lis pass by with very deformed skulls.  I see older children walk in for a one year check up, happy and normal looking as can be.  I see some broken bones and casts.  I see some children who are cancer patients.  I breathe.  I breathe.  I make faces at Lis, who sticks her tongue out. 

We get back to our room, and the doctor is actually pacing around, waiting for us.  She looks like Merryn Streep from Iron Lady, which I find oddly comforting.  She is no-nonsense, and doesn’t sugar coat it.  When she finds out that we have a slightly higher degree of familiarity with medical terms than the average patients, she isn’t afraid to use the correct words.  She doesn’t dumb it down.  She explains it all. 

No soft spot.  Craniosynostosis, of the sagittal variety.  Surgery.  6 hour operation.  Blood transfusion.  Complications.  Success rates.

She runs through a series of brief tests with Lis. Lis is totally normal in all of them, but she asks if Lis is rolling over.  “Yes,” Vor says.  “No,” I say.  We look at each other.  Vor says, “she did the other day!”  I say, “She had help.  It doesn’t count.”  Vor sighs.  “That wasn’t really help.”  I shrug.  Either way, it’s only once. 

The good doctor pauses briefly, so I take my eyes off Lis and look at her.  She is looking directly at me.  She says, “This is the part where your eyes go wide and I know you are going to freak out.  I am going to explain this surgery to you.”  She does.  She’s right, and I appreciate the warning, so that I can sort shift my brain into that higher gear where I think, I know I am freaking out. I will display the freak out symptoms later.  I will listen now.

She explains why she thinks this kind, which sounds scarier, is actually better for Lis.  She explains the other kind of surgery, which sound somewhat less scary, and why she thinks it will be less effective and might require more surgery in the long run. 

Vor lets Lis play with his fingers.  She grabs everything, she grabs my necklace, she grabs the skin under your chin and practically chokes you while she laughs with glee.  He pats my leg. 

We see the scans, we get the dates, we make the appointments, we ask the questions, we get the paper work.  I keep it together until the car and then I cry and cry and cry. Vor does too.  I make it home and feed Lis, snuggle her.


I put Lis on her playmat, on her back, and run out of the room to get some good.  I’m gone maybe 30 seconds.  When I come back, she’s on her belly, gripping a toy determinedly that I placed out of her reach.  She’s rolled over, for the first, on her own. 

Tentative surgery date: July 19.


LawMommy said...

Oh Grace...I just...don't know what to say. I am sending you good thoughts, and I will say a prayer for Lis, on the 19th.

Grace said...

Thanks, LM. I'm... I don't know. Just beside myself (ourselves) right now.