This much I know

Firstly, I want to thank you all for your patience and love and support. The many comments and emails I received this week, even if it was only to say 'thinking of you' have made me feel so cared for, and more importantly, that little seedling has an awful big cheering section in our corner.

I'm sorry if I left you all hanging after my little cri de coeur; I needed time to breath out the fear, breath in hope again and collect my thoughts. I wish I could come here today with more optimistic or conclusive news to share. I really do.

The good news is, little seedling almost certainly does not have Downs syndrome. The bad news is that the reason we can be 99% sure of that is because the doctor found a brain anomaly which is generally inconsistent with Downs. Brain anomaly: the words alone were enough to send us into a fucking unbearable, terrorized tailspin. Usually when you hear those words, I think of them as associated with  another phrase: incompatible with life. I have supported enough other moms through this awful scenario not to let my brain go there. I know too much.

But this time, we are lucky; the condition is not life threatening. Little seedling has been diagnosed with fetal ventriculomegaly, in which the lateral ventricles of the brain are enlarged. The condition effects approximately 1 in 1000 otherwise healthy pregnancies, and there is no known cause (in our case, let's chalk it up to shitty random universe speak: these people haven't had quite enough drama yet in making a baby, and anyway <disinterested shrug>, we know they can take it. Keep piling!). Depending on its progression throughout pregnancy, ventriculomegaly can be linked to a whole range of developmental complications before and after birth or...it might mean nothing. There is so little to go on right now, and we were told the next eight weeks will be crucial.

We have a new plan of action, as this pregnancy is ratcheted up from high to high high risk. Tomorrow, before the first rays of the new day dawn, we will awake and travel more than three hours to a specialist centre where a fetal MRI can be performed. This will, it is hoped, give a clearer picture of what else is going on in little seedling's brain. So far, everything else looks normal, which is a really good sign: it puts us on the 'mild' end of the spectrum for this amorphous diagnosis. In fact, all the other organs, according to the geneticist, looked 'perfect'. If things stay this way, we very likely have nothing to worry about. The ventricles could even shrink back to a normal size and the situation resolve itself before birth. Or they could get worse, in which case our cause for concern would be that much greater.

After the MRI we will be followed with bi-weekly brain scans and anatomy u/s; more regular appointments with the geneticist as well as Dr B. All this monitoring is a double-edged sword though. On the one hand, it is of course a great reassurance to know that little seedling is getting the best possible care (and our care team really is stellar) and that this is being treated as the sensitive and emergent issue that it is. At the same time, there is no denying that, well, each u/s appointment, aside from the thrill of seeing little seedling thriving away in there, is a slow and tortuous build-up to the next scary thing. Given my history, I have so much ultrasound PTSD that I don't sleep for days beforehand, and on the day of I feel like I'm going to puke until the very moment when they place the probe on my belly and I see that comforting and still unbelievable movement. Continuing to do this every other week for the foreseeable future? Demanding and exhausting, to say the least. Really, just at a time when we were beginning to think that the high risk monitoring, all the feelings of pregnancy being more scary than natural for us would be replaced by some semblance of routine (ha!), we're thrown from the proverbial frying pan into the fire. The painful irony of preparing for one piece of bad news only to be blindsided by a potentially dangerous not-that-but-this scenario is, well...it is what it is. Scary, still confusing, tortuous, vague, fucking frustrating, maybe nothing.

As I was swimming through the sea of information, research, prognoses, opinion, struggling to keep my head above water and trying not to swallow big gulps of fear, I clung to these two things: not life threatening, and not life limiting. We know so little else. I could spout all the odds and statistics and case studies that the doctor barraged us with, but the end game is always the same: wait and see. Little seedling could be perfectly unaffected by the condition in the long run or might need medical intervention even before birth. We could be looking at a child with zero special needs or almost undetectable ones or those that require lifelong therapeutic assessment and intervention. So so many uncertainties. The waiting and wondering is a special, harrowing kind of agony.

But this much I know.

We are so so lucky. We are grateful beyond measure for each and every day with this little seedling, who wriggles and squirms with an astonishing aliveness that both keeps H and I in the blessed present and thwarts all attempts on the part of doctors to monitor progress, as though possessing a well developed sense of mischief along with her mother's inherent mistrust of white-coated authority.

She is a feisty, strong-willed, courageous, opinionated, unique, determined and stubborn seedling, this tiny girl of ours.

So yes, H's fatherly instinct and the kindly Austrian doctor's educated guess were correct. We are having a little girl. She'll be a barricade stormer, this one, said H, jesting at her unorthodox trajectory, her unwillingness to either cooperate with expectations or relinquish her claim as anything but the central role in our consciousness.

We're in for a ride. We're not really prepared for it, for any of it. But we'll take it.

And this much I know: we are having a little girl. S will have a little sister. We are so very fortunate to have the little unorthodox family that we do. Every day matters. Nothing is certain. And we couldn't possibly be more in love. Nothing changes that.

Girls with attitude. Source