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.

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.

Overwhelmed, negative and positive

You may have noticed in recent days that my blog was re-set to private.

It's not that I actually wanted privacy per se, or that I've even updated. On the contrary, I have had little time or energy to post blow-by-blow updates, and even if I did, I wouldn't know where to begin. Girl Wonder has been back in hospital for going on a month now, and is struggling. We are struggling with fear, watching her suffer with so little complaint. She deserves a babyhood free from all this pain and illness.

Also, there comes a point when it becomes a special kind of overwhelming just to see how overwhelmed others are by the sheer volume of your misfortune. And at the same time, I don't want to come across as all woe-is-me, because however hellish things are, we continue to know and celebrate how blessed we are. There continue to be moments of happiness. My daughter makes me laugh out loud with surprising regularity, given our current situation.

So, not knowing what to do or say in the face of all this, I just stepped away.

And then, as I wailed my sense of fear and injustice to a small group of amazing parents who have carried me through many a disappointment and triumph, something amazing happened: they poured out support and strength for our Girl Wonder. From the four corners of the globe, they enfolded me in their nurturing love. They offered to fly here to just sit with us and cry. They researched medical journals and sought expertise on our behalf, as we battle the many diagnoses we're dealing with. They offered to feed us, literally and metaphorically. The incomparable soul, the generous heart that is le petit soleil, (who is herself facing no insignificant measure of heartache and stress and fear in these days), has taken the un-expected step of drawing together all this love and support to give us some concrete help at a time when we would otherwise feel very alone.

And now I'm overwhelmed for a whole other reason. There are no words of gratitude sufficient enough to repay this kindness. The gesture is so welcome, but it is the spirit behind it and the feeling of being embraced, overwhelmed by loving kindness, that are really a balm to our weary spirits right now.

I so hope to be back soon, with the time and energy to be giving you a happy update. In the meantime, Girl Wonder draws on your care and good wishes, and H and I continue to be oh so thankful for your thoughts, prayers and actions.

(**I have continued to be active on internet fora where I have shared personal details first put down in writing long before it occurred to me to be cautious about my identity, long before even the birth of this blog. That space seemed like such an intimate family context, while I guess I've always viewed this blog as a lot more public, but given the uniqueness of our situation right now, it wouldn't be difficult to trace those personal details back to here...If you should happen upon them, or know me in that other context, I'd appreciate you not referring to our names or that other space here.**)

 

Not out of the woods (or the hospital, as it happens...)

After several days in which she did so well she surprised her care team, Girl Wonder has been (re)hospitalized for sudden, rapid weight loss, low temperature and suspected now confirmed sepsis. She's being given an aggressive course of antibiotics, put under heaters, and we're supplementing my breast milk with high calorie formula.

When the doctors mentioned meningitis (though probably unlikely), I finally lost my shit once and for all.

My resilience and reserves of energy are at their lowest ebb yet. We've had to be so strong through one blow after another. Girl Wonder has had to be so strong. Why does this shit keep happening to us? I'm so so scared and can't stop crying. Infection in a pre-term infant (let alone one with all her complications) can be life-threatening. I just want her to have the chance to be a happy baby already. Our hopes are so simple, yet so seemingly unachievable. I can't help but feel we failed her somehow.

I'm confused and afraid and sleepless, not because of the poopy diapers and late night feeds and colic that are supposed to be the cause.

How we're even putting one foot in front of the other I have no idea, except, I suppose, for her. H said it best today, after we watched in awe as she endured a painful spinal tap procedure with no fuss and was all smiles 10 minutes later: at less than six weeks of life, Girl Wonder is the most impressive, inspiring human being we have ever met.

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

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.)

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.