Friday, March 17, 2006

The other shoe...

I've finally done it.

I've talked about this for a couple of years, but always had reservations. My motivation for beginning a blog now is simple: there are ongoing developments in my life and the lives of my five little punkinheads which I cannot bear to speak out loud more than is absolutely necessary. (Under other circumstances, there are certain people IRL who would find that utterly hilarious. Me? Wanting to be quiet?) So I will tell the story and post updates here, and everyone continues to be more than welcome to call, write, take me out for decaf mochas, whatever. But I can't tell this story over and over again.

Today my tiny baby boy saw a neurologist. The baby's head has dropped off on the growth charts from 17% at birth to less than 5% currently. The heavy thud you heard around midday today was the other shoe. It dropped. Since I had weird visual flashes of knives flying at my belly at about nine weeks gestation, wondered aloud whether or not it's possible for a babe to have seizures in utero, and saw "mild ventriculomegaly" on the ultrasound report, this is what I've been not panicking over.

The very nice doctor restated our new normal several different ways during the course of our half hour chat, because I didn't seem to get it. Perhaps I was too calm in the moment? The good news: baby is smiling responsively, cooing and gurgling, following objects. And, to keep things interesting, the bad news: the baby faces a "99% plus" chance of having some level of serious developmental and learning issues. He's having infantile spasms (a type of seizures) which require intervention in order to minimize the negative impact. He's hypertonic in some very specific and alarming ways (read: his rolling over and holding himself erect at such a young age is not precisely a good thing, even though two of his sisters did it much earlier). If his brain were developing normally, his head would be growing normally. There is no name for this. My torch titers were negative, his chromosomes normal. I am about to become an expert in something no mother wants to know this much about.

Next week, he will have a 24 hour inpatient EEG. Depending on what is seen while he's there, it may be extended to 48 hours. He will have another CT (the first was within days of birth, while he was in NICU), in part to identify whether or not his sutures remain open, as his anterior fontanel has already disappeared. Bloodwork will be done to rule out certain rare metabolic disorders.

It is my hope that I will be able to find grace and peace during the next several days and that eventually I'll be able to write about all sorts of other stuff, nifty stuff, like how nauseatingly great my kids are. (smiles) Or how lucky I am to have a gallery of the world's best friends and family and in some cases, complete strangers, holding me up and together. As you may know, this health challenge for Q. is the latest installment in what has been the crappiest eight months of my life. Throughout, I have prayed Anne Lamott's prayer, paraphrased: "Please, please, please. Help, help, help. Thank you, thank you, thank you." A friend asked how I could be praying thank you's in this and I told her that as long as the kids are okay, I will be too. I have to be. I am their mom and they need me to be sane and kind and compassionate. Functional. Someone has to be modeling that for them every single day, so I will be okay. Now this detour.

So. The littlest punkin is busy trying to keep his burps from grandma, the bigger ones are asleep, snug in their beds. The week is over, thank God. Now to rest up for what the next one brings.

Thanks for dropping by. Peace to you and yours.

2 comments:

Student of History said...

OH, Carrie,
My heart just aches for you. May you feel His presence every single day.
You are loved!
Kate

4-H Mommy said...

Carrie, Carrie, Carrie...
I cried after I got off the phone with you and I cried more reading this. You better start building up your neck muscles cuz your crown is gonna be HEAVY!
Bryce is praying and surprisingly insightful about this for a 4 1/2 year old.
God, come soon--we're ready for perfect!
Love and hugs to all six of you! And to the seventh (I suppose).