Wednesday, May 12, 2010

I don't talk much about Lilah's seizure disorder because 1. it's controlled by a hefty dose of Phenobarbitol and 2. of all of her diseases, it rocks me the most. She started having seizures the day after she was moved out of ICU and to a regular hospital bed, a cruel twist of fate, as we celebrated an improvement in her heart failure and tried to wrap our brains around what it meant to have a baby with severe congenital heart defects.
The seizures started in the middle of the night and even though my mind knew instantly what I was seeing, my heart was sure Lilah was dying. I screamed for the nurses, who asked me things like "when did it start?" and "has she had a seizure before?" as the seconds moved by. The first one lasted 22 seconds and they lengthened each time. The neurologist came by the next day, mid-morning and 6 seizures later, and when he asked me "what makes you so sure they are seizures?", I could have strangled him with the 8 wires that were connected to my 10lb baby.
There is nothing in this world that compares to seeing your child suffer that way--her tiny body ravaged by tremors that you are powerless to stop. I would have taken 20 bullets to stop any one of them. Praise the Lord that the doctors were able to get the right meds and dosages to stop them in 3 days.
Now her neurologist says it's time to wean her from her anti-seizure medication. Actually, he's being saying it for almost a year and I've been putting it off....claiming it's not a good time, that Lilah's sick (when she just has the sniffles), or that I can't find a sitter--when really, I'm just scared. Really scared. I would do anything to stay in the safe-zone of Phenobarb, where I can rest my eyes at night and not worry that each little sound is my sweet girl convulsing in her crib. Where I can go to the grocery and not worry about a Grande Mal seizure in the middle of the juice isle, capped off with an ambulance ride to Children's.
But, I know neither motherhood, nor life, are meant to be driven by fear. So, off to neurology we go tomorrow, for an EEG (as a formality) to check Lilah's brain waves. To get rid of yet another medication (at one point she was on 13, now 4!) for her. And possibly add one...some type of sedative... for Momma....:).
In all seriousness, I ask for your prayers. Prayers for Lilah, that these tests tomorrow, while routine, might revel a reason to keep her on her medication if she still needs it. If not, that she will continue to be seizure-free after discontinuing her medication. Pray for Paul and I, for a continued acceptance of a life of parenthood so different from what we imagined and for a perfect peace, that only He gives.

1 comment:

Elizabeth Browning said...

Always in my prayers but will say special focused ones tonight. Good luck tomorrow. Will be thinking of you.