Tiny 12's

With all the excitement about the bustling start to the year and Seattle most decidedly making their voice known, it’s been a little chaotic around here. In the hubbub, while everyone else was basking in a Seahawk glory we took our little girl to Seattle Children’s Hospital.

That is a team that deserves a trophy. They’re wonderful there. Every floor has bright colors and kind people so families and children feel comfortable… Well as comfortable as you can at a hospital. Everywhere we looked there were 12’s, including our tiny 12 with her own little headband just her size. It was nice to have so many folks not worried about what was wrong with her but more excited to share with her their excitement over this enormous victory.

And it’s a pretty cool victory that’s special to the heart of Seattle Children’s. Because a football rivalry turned into a fundraising campaign that benefited both Seattle Children’s and the UCSFBenioff Children’s Hospital. Another victory, especially with our Hawks making monthly (sometimes weekly) visits to the hospital for fans who can’t make it to games. But our game is just about to begin. We’ve been gearing up for it since her last surgery in July. We knew this one would be harder, and that this one would require more patience.  And the build up is killer.

I don’t know what to expect this time. Ondine was tiny last time. She was just learning to move, so they didn’t need to take any extra precautions. She was medicated and recovered in record time. The Poster Child for NAM molding according to her surgeon.

That’s great but my understanding of this surgery is that it is twice as difficult and recovery is twice as long. Because this is the more dangerous of her surgeries, it’s entirely inside the mouth. If you’ve ever had a tooth pulled or worse, cut from your mouth you know how painful it can be just to bump it.

My prayer is that some of that love and hope that our 12’s gave the Seahawks and took them to victory can take Ondine there too. She’s one of the tiny 12’s, the brave children who have to go up against giants at Seattle Children’s Hospital.

Take a moment for me please. Say a prayer, not just for Ondine but for all of the kids who are currently at an away game. Away from home, away from family and friends, away from their favorite nighttime cuddles and praying for a miracle.

Pre-Ops... Again

Monday morning, bright and early, it was time for our pre-ops. This is sort of a standard health and wellness check to make sure she’s ready for surgery and not in a condition that might inhibit her recovery or increase the risk of infection afterwards. So we knew the drill.

We arrived early, checked in and were whisked away to our private room where we wait for the parade to begin. Not nearly as exciting as the Hawkalypse. It’s just the three of us waiting. The first person is the nurse, who checks growth including height, weight and head size. This was the first time it clicked why on earth her head size is important. I thought it was just for developmental milestones. It’s not.

If your child head is larger, like our daughters, it may not be that she has a big head. What bothers doctors is that if a child’s head is larger than normal and not following the average trajectory of growth but accelerating past that, it could mean that there is a build up of fluid between the skull and the brain- and that is a very dangerous and scary thing.

Typical signs of this is lack of focus, lack of motor skills, non responsive and, you guessed it, an abnormally large head. Ondine has exactly one of those symptoms. If you’ve met my brother (who got stuck in the birth canal) or my husband (who has met exactly one person with a larger cranium) than him or me (who loves hats and can NEVER find one that fits my hug noggin) then you’d understand: we have big heads. On one side we can trace the line to Vikings, on the other the Celts. We are large people.  They measure us just in case before her LAST surgery. Yep, height weight proportionate, just big boned.

But, as per usual they somehow forgot that they measure all this last time. Or maybe they’re erring on the side of caution, which is probably more accurate. Ondine is wicked smart, incredibly active and nearly walking for the last month (which I’m told is unusual).  Her head shape is normal, and even though it’s a big skull, it’s not out of the ordinary for the rest of her body. She’s in the 50^th – 90^th percentile for weight and height as well.

Suffice it to say, they decided she needed an MRI. I’ve had those. They’re annoying, loud and uncomfortable. They tell you to listen to the relaxing music and just try to fall asleep. Yeah right. But you can’t tell a 10 month old to just sit still. Oh no. There is a method, but it’s not fun for baby or for mommy.

Into the room with so many warning labels it might as well be an office in Fukushima. It’s dark, cold and there’s a stranger in it. Ondine does well with most new faces but with men she has been shy as of late, also a normal developmental phase for babies.  So the new face is being very nice, but he now has to swaddle Houdini. To do this we start by putting her tiny little head in a vice, a soft padded vice, but a vice all the same. Next, we swaddle her in industrial hospital sheets, one arm tucked nice and tight, then the second. Ondine has figured out now that something is about to happen and she is NOT going to like it. He’d already put a little wax in her ears to protect them and now we Velcro her down. One big strap over her chest, one small strap over her forehead to keep her in place. In she goes to the tube, she is now in hysterical tears. The crazy loud machine makes it worse, she doesn’t know where she is she can’t get away and this beast of a device is making monster noises.

Moments later she’s withdrawn, unstrapped and handed to me. She has those panic tears. The ones that are desperate for comfort and full of fear. The outward expression that an adult would be able to articulate but a child must hope that you’ll understand. I do, I hold her tight and we head back out for daddy and a ride home.

The good news, she’s perfectly normal. The bad news, mommy cried too. I just hope that when surgery happens week, it’s not as scary as the big bad MRI.