Wednesday, October 19, 2011

Here we go again...

There were a couple of hours of pure denial.  I really impressed myself.  We checked out of the clinic and then listened to Nile tell us how absolutely starving he was as we drove up and down Highway 6 trying to compromise on a place to get lunch.  I have never been a good liar, and I am especially not good at suppressing my feelings in the company of a close friend or loved one. But I was coasting along pretty well.  I wanted the "everything's gonna be alright" phase to last a little longer.  I've already been through the scary, uncertain, out of my control phases of  having a child with a condition that needed surgical repair.  And I remember that I didn't enjoy that.  I'd much rather spend time in the "she's recovering wonderfully, she's very happy and normal, things couldn't be better" phase.

Dr. Puccioni, Adeline's neurosurgeon, consulted with us for at least 45 minutes, but he didn't waste anytime before telling us that she needed further repair. During her first surgery (already almost 10 months ago!), in addition to totally removing, reconstructing and replacing her posterior scalp, the surgeons remove the fused sagittal suture that ran down the top of her head as well as bone on either side to allow for normal growth and expansion of the forehead.  The "normal" growth and expansion occurs in 90% or more of  patients.  But Adeline's forehead didn't "reprogram" itself.  It continues to grow long and narrow and is not increasing in width. As a result she has more pronounced forehead, or "frontal bossing" and lateral pinching of the temples.  It is not going to get better, in fact, it will get worse.  We could wait until it gets worse - we talked about how many parents in this situation wait until their children are 4, 5 or 6 years old.  We think Adeline is a beautiful, healthy baby girl (and of course, the neurosurgeon agrees!)  But by the time she is school aged, and is developing a "sense of self", the birth defect will be very evident. He told us that he firmly believes that a person's pysche is a vital element  of her health and well-being - just as important as any other medical condition that could be caused by craniosynostosis.  So when these kids enter school and realize how different they are and the parents realize how different they are, the parents are more than ready to correct the defect.  It is inevitable.  And he would be more than willing to perform the surgery when she is older.
But there are too many reasons to do the surgery now.  
She is still very young.  Her skull is still somewhat pliable. 
It is easier and safer to remove from her brain right now. The length of surgery will be shorter and blood loss will be less than if we wait.
She most likely will never remember the surgery.
She has a pacifier, a blankie, loves to be cuddled and rocked, sleeps in a crib, and goes to a home daycare.
She won't care that her hair is shaved.
She won't have to be taken out of school or miss out on summer activities.

So this stinks. It's almost worse now that we have been through it and know what to expect.  And I know things could be a lot worse. We are sooo blessed.  I know things will turn out fine - that this has to be done.  But I still despise the fact that it does.  
We have been enjoying our family of four lately. Nile played T-Ball this summer - Aaron coached.  And he started all-day preschool this fall.  We have been busy with school activities and watching Iowa Football and playing outside and spending time with friends and our extended family.  We haven't had much free time to worry about anything.  Adeline and Nile are young and naive and happy and fun and spoiled.  This is what Aaron and I have looked forward to since we first fell in love.
I know that this doesn't take this all away, but it doesn't exactly fit in my perfect plan.

So now we are back to waiting for the insurance preauthorization process.  Dr. Puccioni's (Neurosurgeon) office contacted Dr Miller's (Craniofacial Surgeon) office today.  They will write letters to the insurance company and wait for the insurance company to authorize the surgery before they will schedule it.  Luckily, our insurance is Blue Cross Blue Shield, and since one of the big-wig's sons was born with craniosynostosis, they usually authorize quickly.  I hope I am more patient this time.  It would be nice if she could have it done this year since we have already applied payments to our out of pocket maximum.  But it's not our priority.

My love for her grew so fast during the last surgery and recovery - I can't imagine how I will feel when this is over.

So I'm back to obsessively kissing that (not so perfectly round) head of hers.

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