Friday, 23 May 2014

The fiesty, five pound Girl Wonder

This will be quick, as I have five lbs of soft, rosy, delicious smelling, euphoria-inducing magic sitting next to me waiting to be cuddled.

In brief (and in response to popular demand): we are home. After four weeks of NICU (which, I am not going to lie, were hellish and overwhelming; more on which later), our Girl Wonder was released from hospital yesterday. It's beginning to dawn that she is really ours, that she is here to stay.

Just as her prenatal predisposition suggested, she flew past every hurdle with flying colours. At less than 48 hours old, she underwent surgery to repair her duodenal atresia and although we were told not to expect too much too soon, was feeding through her stomach and managing to use her bowels before her surgeons predicted. At two weeks old, when her drainage tube was removed and we were told that it would be slow going, she managed to defy expectations again and master the art of breastfeeding within a matter of days. At three weeks, after her most recent brain scan, she proved how inconsequential was that initial diagnosis of ventriculomegaly which sent us into a tailspin what seems like many lifetimes ago now. Her ventricals are holding stable and are not expected to affect her development. And the Down syndrome?`Right now it doesn't feel like a big deal. She is beautiful and perfect and exactly who she is meant to be, and so we will wait and see how her own unique challenges and talents unfold. (Although allow me a moment of maternal bragging in saying that there too, she has exceeded all expectations for what is 'normal' at this stage for a child with Trisomy 21.)

She is still on partial tube feeding and H and I have mastered what seemed like scary, medicalised feeding procedures only a few short weeks ago. But she has also steadily put on weight, and although still adorably, mind-bendingly tiny, she now weighs over five lbs.


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In those first days after her birth, as we marveled at her resilience and tolerance for invasive medical procedures, and she was wearing one of those little masks that go with the photo-therapy many preterm babies receive, we joked that she looked like a miniature superhero a la Robin the boy wonder.  And truly, her super-hero-like qualities made this an apt comparison. One of her nicknames has become her name preceded by the capital S adjective Super. And so she is.

Her given name is a traditional but uncommon one, and so I've been wary about broadcasting it here. And thus, for the purposes of this blog, she shall be known as the Girl Wonder. (Incidentally, I am not yet sure what will become of this space. There is a big part of me that thinks that her story is now hers to tell. There is another part that thinks she deserves to be shared with the world, and to hopefully inspire hope and confidence in others who may be experiencing some of the challenges that we faced in getting here, to her. There is another part still that is so chronically sleep-deprived and awe-struck by my own offspring that blogging comes faaar down the list of priorities right now, and thinks that's as it should be. And besides, I'm really not sure if I have a mommy blogger in me...But on all this, we shall see...)

For the time being though, know that in  our un-showered,junk-food-eating, sleep-deprived, befuddled and overwhelmed state, never has all seemed so right with the world. That we are thankful for your love and support. That, despite my own slow recovery from the c-section and a bout of endometritus (I am not, it would appear, as resilient as my daughter these days), we are beginning to thrive. That life, such as it temporarily is, feels crazily, heart-bustingly full.


A fitting first gift from a proud grandma

Saturday, 17 May 2014

Four years, still like yesterday

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
                                                      
i fear no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)
 
                           ~ E.E. Cummings 
 
 
Source.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
You are loved and missed every day sweet boy, and woven into the tapestry of our days in innumerable, magical ways. We will always be grateful for you. We will never stop wishing you could have stayed. We wish you had the chance to meet your little sister. (Perhaps you have.) We wish she would grow to know you. (We will do our best to make sure she does.)

Friday, 2 May 2014

A long-nurtured, fragile hope, resoundingly answered

I know with my last post I left you with the cliffhanger of all cliffhangers; that wasn't fair and I apologize. In my defence though, these have been momentous days. Huge. Obviously.

I am thrilled relieved overjoyed <apt-words-fail-me-but-here-goes-anyway> here to announce that after a scary final week of pregnancy in which I was monitored for a possible pulmonary embolism and diagnosed with pre-eclampsia, the little seedling made her arrival on a stormy Friday afternoon, at 34 weeks and 2 days, in a c-section delivery that was as close to the ideal birth experience as we could have imagined.

Suddenly she was here, perfect and magnificent and loud.

There were no dramatic tears as in the movies on screen or played in my head; instead, utter, magnificent silence, a deep recognition of the sacred tearing into this profane space where monitors beeped and lights blazed and a medical team diligently went about their work of sewing me up, marking this momentous, earth-shattering event on my body with each stitch.

She pierced the reverie with her screams. H and I were awe-struck. I don't think we quite believed it, any of it; her newness, her pinkness, the proof of how alive she is. The staggering, simple fact of her existence. Still don't.

But she is here.

Even as I type this, my breath still catches realizing it, again.

Her name means hope in Hebrew. At a time when we were close to giving up, she restored ours in multitudes, from the very moment she made her first, unexpected appearance.

I am in love, of course, but it is nothing (everything?) like I thought it would be. There is all the same confusion of emotions - elation, fear, doubt, euphoria, hope, trepidation, joy - of any intense love affair, yet none of the uncertainty, oh no.

We were made for each other.



Friends, thank you for all your thoughts and wishes as we passed those final, nerve-wracking hours. Thank you for wishing and praying for her. Thank you, all this time, for helping us, always, to find our way back to hope.