I'm Scared

I'm scared that my little girl really does have a major visual impairment. I think the opthalmologist thinks she does... I suspect this is a fact to her, but the nature of it is still undefined... Logic would dictate a neurological injury - the dreaded "Cortical Visual Impairment", where the eyes see, as they should, but the pathway to the brain is damaged such that these sights can't be adequately interpreted and processed... That's logic. But then there's the newfound issue of her eyes not responding properly to light, which they apparently do in classic CVI. My little girl's pupils are very sluggish in constricting when exposed to light... Hence tomorrow's Electroretinagram...

I think the opthalmologist said, last week, that if the ERG is normal (and hence there is no particular ocular/retinal problem), then she would diagnose Ischemic Brain Injury... That was such a massive statement on her part, but diluted with her sense that Ariana's eyes had improved, that her fixation was better, that she appeared to be "looking"... So it's all quite confusing. The more I read, the more I find that there are often eye issues comorbid with CVI, in any event.

This is the biggest stress in my life currently, and something of a roller coaster... Because my baby girl has improved vastly... She clearly sees.... She follows me around a room, perhaps as any baby of her age would do. This morning she lay and gazed at me for ages, and cried when she was left alone with my mom. She really seems to look at people. She tracks toys... And more than anything she has this big, sparkly dark eyes that are so prominent on her beautiful face. Her MRI was normal, and by all accounts, a CVI baby should show some quite obvious abnormalities, and have several co-occuring neurological problems. But there's this light issue, that we wouldn't even know of had we not had her assessed. Were she not an asphyxia baby, I would probably be quite satisfied, now that her fixation and tracking has improved. I am neurotic. No doubt. And neurosis peppered with genuine concern is a terrible place to be.

I worry for her. If there's a problem, what will it mean..? I worry for me... And I worry for Yaghoub,
my husband, who would have such difficulty accepting that there is "something wrong" with his little girl. When, a month ago, her MRI came back normal, I thought we were out of the woods... One would assume that imaging that specific, if clear, would imply neurological health. But apparently it doesn't.

I wish this had never happened... I wish we could just be free and unburdened as a family... Maybe I wish I'd never chosen the doctors I did... Or that I'd pushed harder when her heart rate was so flat, at 34, 35 and 36 weeks. But I'm not a doctor, and I don't KNOW these things... Her 1st c-section date, set at 4 months pregnant, was a week earlier than she was actually born. If we hadn't changed that, would I have had my baby on my chest in the theatre, and taken her home 3 days later...  Who knows.  Thank God though that she's with us at all... That the Hypothermia Treatment was so effective that she is NOT Cerebral Palsied or retarded... That she is alert and responsive, meeting her milestones, etcetera.

But still this dread remains in me... Still I carry this fear... I was so careful when pregnant. I read so widely... I didn't use sunscreen as it contains liqorice, which affects IQ in fetuses. I hardly even took Panado, albeit allowed... I didn't sleep on my back. I just don't understand how a careless oversight could have us in this position.

I hope she's fine. Some days I'm convinced she is. But on others, I'm not too sure. Other moms also tell me their babies sometimes stare off into the distance, or seem disinterested. I just don't know... And despite this Big Test tomorrow, I'm not sure when we'll get any clarity. From my reading, all we ascertain tomorrow is how her retinas/pupils function. A poor result will indicate EYE damage, with or without CVI, and a good result will indicate perfect EYES, but still leave the CVI diagnosis at large.

It's such a downer... The stress I feel impacts on her... And it impacts on my husband, who believes her to be 100% normal. Uncertainty is a killer... I so hope and pray that she's ok.