Wednesday, 30 July 2014

Good days, better news

We received the good news today that a blood test we've been waiting aaages on showed no sign of congenital CMV infection for Girl Wonder. This is significant since the time at which she contracted the infection will likely have a huge impact on whether she'll face any of the scary long-term consequences I mentioned in my last post. Her infection, it appears, was post-delivery, which means she was probably-hopefully-please-gods-above strong enough to dispatch it in those horrible weeks in hospital, and it may not follow her around for life.

She still needs monitoring. It's not a guarantee. But we'll take it. Happily. Joyfully.

Other than that, we are starting to experience some version of 'normal' (more on which later), each day is more hopeful than the last, and we are soaking up every moment with this sweet girl.

Wednesday, 23 July 2014

Dreams and reality

Girl Wonder is home, we hope this time for good. She is resilient and strong and brave beyond anything we could have imagined and we are fiercely proud of her. I can't describe the elation, wonderment and good fortune that we feel as we adjust to this new reality.
 
More than that, I’m not sure how to adequately recount the harrowing experience of the last weeks months. How to tell you about the events that rocked us to our very core so soon after we believed we had found respite from the fear and uncertainty.

About the days of watching Girl Wonder deteriorate physically, knowing there was something dreadfully wrong and not being able to do anything about it as the doctors poked and prodded and wondered for a long time without being able to provide answers.

About the eventual diagnosis of cytomegalovirus, another condition, like the ventriculomegaly before it, that has a might-be-nothing-might-be-life-long-devastation prognosis; the initial confusion followed by the stomach-churning fear.

About my rage at the god damned doctor who broke the news to us, saying in the same breath that ‘because she has Down syndrome it doesn’t matter that much’ if the CMV were to cause cognitive delays that could put her in a wheelchair, unable to speak or feed herself, as though her quality of life were an afterthought simply because she carries an extra chromosome.

About all the ‘minor’ symptoms of her CMV sepsis, including a terrible gastroenteritis that had her writhing in pain for days, after which she ended up being put on nil by mouth and losing even more weight; the terrible edema that swelled her little legs and her tiny face until she was unrecognisable as our baby. 

About how my heart broke right in two the day we realised that this awful hospital experience, practically the only life she had ever known, stole her smile, the one that had been so open and ready only weeks before.

About how excruciating and awkward and necessary it is to maintain some semblance of a family life - reading her stories, giving her bathes - as first time parents in the fishbowl that is intensive care, with a gazillion doctors meetings and hourly monitoring and visits from umpteen therapists every day, none of whom seemed able to help her.

About how I wanted to punch in the face the nurse who chirpily and dismissively told us, as we were reeling from yet another random diagnosis and seeking some concrete answers, not to worry, that love was all a child needed to be healthy; because obviously Girl Wonder is loved beyond measure by so many, but clearly that hasn’t spared her. And because my impotent, helpless rage had to go somewhere.

About how H and I looked like zombies, became shadows of our former selves, functioning on little to no sleep for so many weeks on end, no longer looking after ourselves or caring what we ate or wore as long as we could be by her side and present for every crucial meeting with doctors, there to comfort her after every painful test.

About how the little face that had only shortly before been growing pink and chubby became so ashen and drawn, and how helpless it made us feel to watch that process.

About the day when I was so mad with fear and sadness and sleeplessness that I imagined seriously thought about stealing her away from her hospital bed, taking her off all her machines, putting her in the car and just driving, because I just wanted her pain to end and I thought surely we could find a better way, somehow, anywhere.

About how we gushed our thanks, never with adequate passion or gratitude, at the amazing consultant who finally pushed for the right tests, the answers we needed, the treatment that would make her symptoms disappear and send her home to us.

About the ongoing uncertainty we now have to absorb because we don’t know whether her CMV infection is congenital or contracted post-birth, and thus could advance at a later date. She might be fine now but suffer significant brain damage at eight months or fourteen months or four years.

About how terrifying it is to admit that to myself.

About our tired resignation at the many, many hospital appointments that will be necessitated in order to monitor this situation when all we want for her is a normal, happy childhood and for us to be a family.


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I'm not sure how I can tell you about any of those things, because to look at the happy, growing girl - three months old on Friday - playing on the floor next to me as I type this, it all feels so reassuringly unreal.

If what we've experienced until now has been a horrible nightmare, this must surely be a dream. This girl, she truly is a wonder. A dream come true.