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.

She's coming

You guys, do I have a story for you. It's been CRAZY DAYS since I lasted updated you here, and I was all set to come home and write a nice juicy update.

But then this little girl, with her usual left-field, centre-of-attention antics, had other ideas. We met with our fetal medicine doc and our OB today and discovered from today's growth scan that little seedling's development has dramatically curtailed over the last few weeks. She'll now be better out than in, and so it's time.

Let's admit you tonight and do the c-section tomorrow, said Dr B.

H and I stared. (Stupid, I know; this is after all the moment literally everything has been building toward.)

I don't have adequate words. She's small and we're of course worried about how she'll fare with surgery (which will probably happen over the weekend) and NICU, etc. We're also crazy insane exited and overwhelmed at the thought of finally holding her and looking into that beautiful little face, discovering what colour that mop of hair is.

Send good vibes guys. And we'll see you on the other side.

Getting prepared, part III: and the universe laughed

Alternate titles for this post: What a difference a day makes; Ready or not,  here she comes; Reasons why all your 'planning' is stupid; Planning schmanning; or the simple Gotcha!. Any works really, so take your pick. And you'll have to excuse me if this post is all over the place, a rambling, incoherent collection of my thoughts at this juncture. These have been heady hours.

Yesterday at our appointments with both the fetal medicine specialist and our OB, we learned that although little seedling's growth is still on track (she's now 1.75 kilos, or 3 lbs8 oz), the diastolic flow of her umbilicus has further declined. While Dr B did say that he 'doesn't think it's a matter of the next 48 hours', I was given the first of two steroid shots to help mature her lungs, and we've been put on high alert. I've just returned from the clinic where I had the second shot, and tomorrow we're back again for another non-stress test and further doppler reading. Basically, I'm existing right now just to gestate this little girl (even though my maternity leave doesn't official start until month's end). I might as well just move in to the hospital (though I'm glad they haven't suggested admitting me - yet).

And even though I was given an inkling of this trajectory nearly two weeks ago, intellectually I guess I couldn't quite grasp it. Not for the first time though, my body has been smarter than my brain, and I find this level of intuitiveness amazing. Yeah, my body gets it, she's doing her job and she's been trying to tell me something. I was slow to catch on, but I'm getting there. Physically, I've felt extremely pregnant - like, imminent delivery, as I am now learning - for several weeks now. I haven't slept through the night in weeks, and when I wake up at four in the morning, it is with the ravenous need for food RIGHT NOW. (I'm kind of also hoping this means little seedling is on a final, fortifying growth spurt.) I have crazy, constant Braxton Hicks that seize me with a breath-taking ferocity, and a constant pressure in my lower pelvis. And ok, I often pee a little when I sneeze. Then I feel like I have to pee all the rest of the time, but when I get to the toilet, nothin' doing.

When they measured the amniotic fluid levels along with little seedling's growth yesterday, here were the results: I am carrying a girl who is a wee bit behind in terms of average growth, but she is swimming inside a uterus measuring at 41 weeks. Yikes.

You guys, this is pretty much it. (But I still hope she'll hang on another few weeks, just to build up a bit more and gain strength. I can hope, right?)

H and I spent yesterday after the appointment stumbling around in a kind of daze of heightened awareness, yet not really aware of anything else besides this Huge Thing at all. It's scary but also exciting to think we might meet our daughter so soon. We cried and we had huge grins on our faces and got distracted and irritable and then laughed and cried some more. We felt all the emotions. All of them.

 

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So how prepared are we? With the all important details?

Finish that novel I was working through? Squeeze in one last date night with H? Go for a pedi to avoid in-hospital embarrassment at my unsightly winter toes (and while we're at it, don't I need to do something about my now unknowable nether regions, which I haven't been able to access since, like, February)? Baby clothes washed and ready? Yeah, some of that stuff we've managed. I still haven't packed a hospital bag. And in truth, we still need to finalise a name for this girl (we're pretty much there, though I have moments of paralysis thinking about the responsibility involved in shaping a whole person's identity in this way). But then, thank gods I managed to watch the final episode of True Detective; I'm not sure I could have gone into this not knowing of the fates of Rust and Marty.

But seriously though, I had a epiphany sitting in the crowded clinic yesterday, awaiting my shot and trying to absorb this scary new development.

I have agonized over the possibility of a scheduled C-section - recommended by Dr B as the best way to avoid unforeseen complications and make sure everything is in place for her transfer for further tests and surgery - and a (maybe?) desire to try for a vaginal birth. I have struggled with doubt and worry that I have not 'enjoyed' this pregnancy 'enough', coping as I was with recurrent terror and stress from so many quarters. Should we have done birthing classes, even though I felt and knew we wouldn't 'fit in', just so as to maximize the whole experience? Shouldn't I have spent more time listening to my hypnosis tracks, to make sure I am all calm and collected and present for the birth itself? Yadda, yadda, yadda....

But here's the thing: when we get to the end game, the real deal, none of this - the little things we do to convince ourselves we have some control over any of this, or even the lack of control itself - matters even one jot. It's superfluous. She is all there is.

It kind of reminds me of that poem, one that has brought me much affirmation in times of difficulty. (Go read it now; it's short and powerful.) Only now, in an entirely different context, it becomes all the more uplifting and joyful and speaks to me on a whole new personal level.

We sit and we wait, H and I, for our great day to dawn, for our little light to fill the world.

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We've worked so hard to get here, and she's worked so hard to stay and grow and thrive. It's been such a long journey, and yet it's far too soon. Now more than ever, we have to keep believing in her.
Whatever the coming days hold for us, (and I'll certainly endeavour to update), keep us in your thoughts, won't you friends?