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?

Getting prepared, part II: calling all NICU veterans

As a brief postscript to my last post: we went in this week for one of the many non-stress tests that will lead up to little seedling's arrival, and let's just say, she didn't perform up to standardized expectations...Her heartbeat stayed a steady course and was nice and strong, but she just refused to jump on command. H and I weren't really worried though; our parental intuition has become strong, she had been doing her routine kung fu moves on my bowels only an hour earlier. In those moments at the clinic, as bad luck would have it, she was just more in the mood for a snooze than a triple somersault (which of course she was prepared to do as soon as the monitors were removed).

A moment of maternal pride: my kid is already set to challenge the legitimacy of normative, numerically-based testing, achieving in utero what it's taken me four degrees and an entire career to do. Then again, (having proven herself very blissed out early on), maybe she was still just chill from all the jazz music and brown cafes and one too many Belgian beer of last week...?

Either way, a girl after my own heart.

One chilled out baby. Unlike her mother. Source.

 

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But that's not really why I'm here. Today, I want to ask your thoughts on a topic which looms large in my mind these days.

I think when I said that there was much to prepare before little seedling makes her appearance, a lot of people heard stuff to prepare. Trying as we are to be proponents of a certain level of simplicity parenting, we're working not to get too hung up on stuff just yet, especially as her hospital stay will postpone a lot of those immediate needs, and since each baby is unique in there needs and habits, it seems to make sense to wait and see what's actually useful. We have the basics: enough clothes to start her off, a place for her to sleep, and this carrier which is recommended for babies with low muscle tone, as well as a ring sling. All the rest will come, and we're not fussed about that.

Our preparations, however, aren't really about that anyway. Basically, there is a huge part of me that has been terrified preoccupied with the prospect of a NICU stay since the moment the possibility was raised.

I've slowly learned to adjust; there aren't (as many) moments these days of late night sobbing on H's chest, overcome by fear and heartbreak at the thought of my little girl in such a scary, clinical environment, hurting or feeling alone. I'm trying to embrace what lays ahead as a necessary and helpful stepping stone to getting our daughter healthy and home in our arms, where she belongs.

And I'm grateful that we got all these diagnoses prenatally and were given time to prepare mentally. I don't know how I'd cope having all this sprung on me at birth. It helped a lot that we've been able to tour the ward where she'll be staying and get a sense of the facilities there. We've met with the ward staff and the neonatologist and the pedeatric surgeon, all of whom seem caring and good at what they do.

I think I do continue to worry about how the crucial bonding of those early hours and days will work. I've had all the benefits of skin-to-skin parenting so thoroughly drummed into me that I can't imagine how she'll feel our presence or know how much love and strength we want to convey to her if all we're able to do is hover over a hospital bed. Or maybe I'm worrying needlessly...I know the hospital is keen on supporting these opportunities for intimacy where medically possible, and there is a lot of support and education for breastfeeding as well.

But still, I can't quite picture it, how we'll spend our time, how we'll bond with her, what that atmosphere will be like.

So that's what this is mostly about. Being as mentally and emotionally prepared as we possibly can. I guess there are practicalities in there too, like what to pack and what to arrange beforehand.

And really, here is where I could use some help.

Bloggy friends, I know that many of you have walked this arduous road before me, and I could use your nuggets of NICU wisdom right now. Were there things you wish you'd known or done to ease the experience? Little rituals you found particularly comforting? Essential items that made your stay more homey, or at least less stressful? And what exactly is it like in there? How much time did you spend bedside? All your reflections and insights are so appreciated.

Getting prepared, part I: babymoon

Alright I admit it: one of the (somewhat frivolous) things on our preparations list was a final waddle jaunt someplace relaxing and slightly luxurious, while we could still pretend it's just the two of us for a few days and get some respite from the whirlwind of appointments and practicalities looming along with little seedling's arrival. H suggested a last minute, doctor-approved, comfortable-journey-by-train to the continent while it was still a possibility; and so we spent last week exploring some lovely Belgian towns, soaking up the fin de siècle atmosphere of amazing grand cafes, drinking the justifiably famous Belgian beer (him), eating mussels (him again), pastries and chocolate (me, me) and generally being aimless and immersed in something other than our day-to-day reality. 

A babymoon is meant for those last moments of couple-y decadence before life is turned upside down by late night feeds and hastily stolen moments for personal hygiene and long conversations about the contents of baby's diapers rather than the contents of the Sunday papers over a bottle of prosecco.

At least that's the idea, right?

For us I think it was as much a respite from the hazy blur of often scary and overwhelming medical stuff that's characterized this pregnancy. And really, there was as much happy anticipation of little seedling's arrival in our conversations as there was avoidance of that inevitability.

We strolled...and window shopped in beautiful baby boutiques.

We visited late night jazz cafes...and laughed at her reactions in time to the music.

Ravenous young lovers with eyes only for each other, we were probably not. (Well, there was our two nights at a beautiful Brussels hotel with a rather racy past. Does that count?)

So I guess not a babymoon in the traditional sense (if the term 'traditional' can be aptly applied to a trend that has arisen in recent decades to respond to our growing affluence and consumerism) of decadence and pampering implied by the term. But ok, both owing to financial constraints and to the fact that I have no intention of eternally forgoing the reading of novels or long country walks just because I am about to delve into active parenthood, ours was a more subdued affair, though none the less delightful for that. Here's a visual sampling of what we encountered....

 

An update, more scans and a change of plans

Well, insofar as we ever had a plan anyway, and if you consider a ‘plan’ to be: having gotten pregnant, hope and pray to all the gods of fertility that baby grows and stays; deliver baby on or near due date.

For us, June 4^th was meant to be the magic number. I had even fully convinced myself – in flagrant disregard of just how many unforeseen loops this whole journey has thrown us – that we had something like eight weeks still to plan and prepare and freak out a little at the massive, mind-bending, life altering change-in-the-form-of-tiny-human that is about to befall us.

We won’t be making it that far, it seems, or anywhere near, unless we’re very lucky.

But let me backtrack a bit.

This week has been a big one for us, full of important milestones passed and happy news in the world of little seedling’s development. First and foremost, her ventricles seem to have stabilised at their slightly reduced measurements, and after 30 weeks they tend to feel that those measurements are likely to hold steady. So we’ve kind of allowed ourselves to exhale on that one. Then, at our request (because our medical team is thoughtful and awesome and takes our concerns seriously), we were sent to another city and another clinic to undergo a fetal echocardiogram. Strictly as a precaution; 40% of Down syndrome babes experience some kind of heart abnormality, and this is by far the scariest and most sever complication that comes with a diagnosis. I can happily report that the cardiologist saw what looks like a normal heart and no cause for concern, though further tests will be carried out on little seedling’s arrival. Yay for happy news on scans!

But because this is life, and ours never seems to want to sail a straight course, opting instead for the adventure and uncertainty (and because, well, every baby comes when it damned well pleases and isn’t that just a part of the crazy euphoric, terrifying adventure?) that comes with really being alive, there are some new logistical issues to navigate.

My amniotic fluid levels are stable for the moment, but it’s something they want to keep a close eye on, given the risk of preterm labour. And on our u/s, we learned that the diastolic flow through the umbilicus is reducing. This is not entirely a surprise, as we know that with a Down syndrome pregnancy, the placenta carries the same trisomy, and therefore a likelihood of placental insufficiency at some point. We were kind of prepared. And yet, we were spectacularly unprepared, in the sense that I hadn’t thought, not seriously, about what it might mean. As in, like, delivery only weeks away.

We’re at 31w4d now, and the new goal is to make it to 36 weeks. June 4^th will certainly not be our magic number, but as long as she gets here safe and grows healthy, everything else is frills, really. There will be an upsurge in the monitoring from here on in, probably every other day, just to keep a close eye on the flow within the umbilical cord and make sure she’s getting all the nutrients she needs. She’s always been a tiny one, measuring on the bottom end of normal range since about 22weeks, (while I’ve had trouble gaining weight myself) and I so want her to be in the best possible shape to face and overcome all the challenges she has in store. Our medical team don’t seem worried about the possible medical implications of a delivery in the coming weeks, since her progression in terms of weight gain has been steady, and I have a lot of trust in them, so I’m trying not to panic either.

Still, suddenly it feels there is a lot to do and arrange (the practicalities of which are also huge, and warrant a post of their own, soon to follow). I think we just lost approximately four weeks of processing time, and as anxious as we are to meet her, our heads are spinning as we try to take in yet more new twists and turns. A month from now...I can’t even finish that sentence, not yet. The possibilities are scary and exciting and unknowable. And I'm trying my best to trust in the process, to trust in our caregivers, trust in her, in my own body. Deep breathes.

The technicolour, lighting speed future awaits

3/21

One of the coolest things about my tiny daughter? Like her brother before her, she has allowed me to see the the beauty and unexpected joys that lie at the margins of experience, those stories we often don't get the chance, don't slow down and listen hard enough to hear in this achievement obsessed, 'perfection' seeking, sometimes brutal world.

Being S's mother allowed me see the deep and abiding love that can dwell in the invisible, those essential things not seen by the eye. For that I am ever grateful. My beautiful S, giving the stars their sparkle.

And in her own tiny life, our little seedling is already enriching us in ways I am only beginning to understand. Teaching us how important each moment is, to breath deeply and not rush. To appreciate how little the 'facts' can tell us about love. To celebrate and champion the unique, the unorthodox, the quirky and the singular.

Both my children have and continue to take me on journeys that reveal their truths in gently unfolding, mysterious ways. Or sometimes in great rushes of knowing that are so striking their realization is almost visceral.

Because of my children, I am a braver, more compassionate - and yes, more human - being than I ever gave myself credit for in the life I had before they came along. I am fiercely proud of them both. Our kids, they're one of a kind.

Although I can understand why some parents might, I don't feel fear when I think about raising a child with Down syndrome. Truly, we are so excited to begin this special journey. To have this unique opportunity to learn and grow alongside her. To see the world anew through her eyes. To glow with pride as she discovers and accomplishes and falls and gets up again.

And surely that's just a universal, parental feeling?

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Today is World Down Syndrome Day. For the 3rd copy of the 21st chromosome; get it? (Also the spring equinox, The New Year celebrations of Newroz for a host of cultures across the Middle East and Central Asia, the day after my birthday and apparently World Happiness Day; so it's generally a week on the calendar I can get behind.) 

I'm new at all this Down syndrome stuff, but already I have learned that there is an amazing global community out there, full of love and acceptance and the readiness to challenge conventional thinking on all the things we think truly matter in life. I like that challenge. These are my people, I can feel it. I'm not religious and I've never been a fatalist, but it's almost as though everything until now was leading me to this.

I read a blog post earlier this week written by Lauren over at Sipping Lemonade. Hers has quickly become a favourite read; she articulates so beautifully all the things I am still too busy untangling in my own brain to put into such moving words.

I hope she won't mind that I'm re-printing here some of what she has to say about today, because I feel sure these are the kinds of things we can all benefit from hearing, whether we're facing our own challenging situations or looking for something awesome to celebrate today. I hope they inspire you as they have me.

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 On World Down syndrome Day:

Since having Kate, I’ve realized that, truly, this day is for everyone and anyone — whether or not you have or love someone who has Down syndrome.

The heart of this day is for anyone who is or loves someone who is human.

It’s World We’re-All-Created-Equal Day. World We-All-Matter Day.

It’s World Don’t-Count-Me-Out Day and World I’ll-Surprise-The-Heck-Out-Of-You Day.

It’s World Different-Is-Great Day. World Be-Yourself Day.

It’s World We-All-Have-Special-Needs Day. And World Wouldn’t-It-Be-Boring-If-We-Were-All-the-Same Day.

It’s World Help-Each-Other Day. World Love-Each -Other Day. World Serve-Each-Other Day. World We’re-All-In-This-Together Day.

It’s a day where we advocate inclusion and awareness of those with Down syndrome — and of all of us.

We are all born to mothers who we hope will love and accept and celebrate us. We are all born to a world where we long to be heard and respected. We all have challenges to overcome and strengths to celebrate — and we all need others to help us along the way.

And on World Down Syndrome Day, it’s a good time to remind ourselves, our children, our friends and family and communities: do not be afraid of what’s different.

Do not underestimate those around you.

Do not count out those who do things in their own unique way in their own unique time.

Encourage. Include. Involve. Accept.

You can find the original post in its entirety here. 

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And while I'm at it, since this video is doing the rounds this week, click on the link below. I dare you to watch it and not cry sloppy, happy, uplifted tears.

Happy World We're-All-In-This-Together Day friends.

What happened in between

Thank you for all your beautiful comments on my last post; many brought tears to my eyes, and all gave me courage and strength and further insight into just how much I have to be appreciative of in these surreal and magical days in which we find ourselves. 28w5d here; so much is going on around us that I have to make an effort to focus on what’s going on inside me (both physically and philosophically), and to stay in this place of quiet bliss that is the third trimester of pregnancy and the wondrous growth of our little seedling. And on that score, things may even be settling a bit.

I know I have always been a staunch resistor of that normative trope that is the chronological timeline so beloved of infertility blogs, but in the interest of filling you in on some of the chaotic, complicated background to the here and now, it seems the least strenuous option...

Week 20 – Doctors rule out the possibility of Down syndrome after discovering in little seedling’s brain that the lateral ventricles are enlarged, an amorphous condition known as ventriculomegaly, which can be linked to a range of developmental delays and medical needs. Totally left field. We are confused and terrified. We’d happily take the knowable issue of Down syndrome over this vague diagnosis.

Week 21 – We are sent to the big city hospital for a fetal MRI with one of the country’s top specialists (who will later, for reasons to become apparent, become known as the Dickhead Doctor). This test shows a rapid increase in the levels of fluid accumulating in little seedlings ventricles, suggesting ‘a dynamic process of the condition I have never come across’. Dickhead doctor also says there are indicators of hydrops fetalis. Both conditions possibly fatal. The possibility of (need for?) termination is raised. Total devastation, rage, more terror.

Back home that weekend, we rush to the hospital after I wake up gushing red blood. Sure she is dying. Examinations reveal placental hematoma; not in any way life threatening. Unless you count the further palpitations that my already over-stretched heart cannot really take right now. Return home to a week of bedrest.     

Week 22 – The fetal medicine radiologist we’ve been seeing up until now (and who we’ve come to love) reviews the report sent by Dickhead Doctor and disagrees with his findings. Firstly, no evidence of hydrops fetalis, but rather a mild thickening of the nuchal fold which she sees as no cause for serious concern. Secondly and more importantly, although the ventricles remain enlarged, she doesn’t think there is anything to support the idea of a rapid increase; MRI and u/s will always have discrepancies in measurement, and in this instance, each method used a different side of the brain to reach their findings, reflecting not increase but asymmetry in the measurement of each ventricle. Obviously a fact that Dickhead Doctor, with all his years of expertise, should have also know and offered, instead of regaling us with horror stories.

But relief if momentary; u/s with Lovely Doctor finds that the connective tissue at the centre of the corpus callosum (joining the two hemispheres of the brain) is not altogether absent but far too thin to support normal brain function. Her liver is also slightly enlarged. Nothing for it but – yes, again – to wait.

Week 24 – Our next bi-weekly monitoring appointment is a mixed bag. Firstly, it appears that the enlargement of the ventricles and issues with her liver have stabilised; YAY! Then, Lovely Doctor finds another, newer anomaly; little seedling is diagnosed with duodenal atresia, a blockage of the intestine that will require corrective surgery at birth. BOO! This discovery leads our team to reconsider the initial probably-not-Down-syndrome-but-something-else prognosis. Now we’re at probably-Down-syndrome-and-something-else. This brings with it a strange kind of relief, since Down as an explanation for any of these other anomalies is far less scary (or potentially life threatening) than idiopathic diagnoses would have been.

In happier news, we also learn at this u/s that little seedling has ‘a mop of hair’, and get all the more excited thinking about who she is, what she’ll look like and who she'll become. One thing's for sure, life will never be dull with her along for the ride. On the train ride home, she fortuitously kicks me several times vigorously, allowing H his first real feel of her presence. He melts.

Week 25 – Nothing in particular happens. Normal week! No problems! Heady days!

Week 26 – Our little seedling is making miraculous progress in leaps and bounds. Not only are no new anomalies discovered (what feels like a first for us in this whole process), but there are astonishing findings in her neurodevelopment: the ventricles are not only stable this time, but have slightly reduced in size, and the connective tissue of the corpus callosum has thickened to the point where they think it probably won’t be an issue. Lovely Doctor says she is impressed by little seedling’s fighting spirit and ability to turn these conditions around, the likes of which she has never seen. Amazement, relief and pride in our courageous daughter. We feel positively jubilant.

We are also told that my amniotic fluid levels are slightly high, a common side effect of the duodenal atresia, since babies with this condition can’t make the swallowing movements required that normally keep fluid levels in check. Higher fluid levels carry a risk of preterm labour, and we may need to consider an amniotic reduction procedure at some point. Super close monitoring is not likely to end any time soon. Sigh.

Week 28 – Status quo! No changes, everything continues to look good. We get to see up close that huge crop of fluffy duckling hair she’s sporting. Lovely Doctor makes the rather obvious comment that ‘12 weeks is the longest now you’ll be waiting for this little girl’, and I am suddenly, inexplicably stunned. It’s really real.

OK, because I am overly verbose and apparently incapable of abandoning narrative style when I write that wasn’t actually the most effective use of bullet-point-style chronology, was it? So for anyone with blog reading ADHD, here’s the summary: we still don’t have an official diagnosis because we refused the invasive testing, but expect little seedling to be born with Down syndrome, and are grateful and excited to start the adventure of life with this amazing, unique baby girl. We know because of her duodenal atresia she’ll require surgical intervention in the hours after birth, and will have a NICU stay of (hopefully not more than) 3-4 weeks to get her healed and feeding normally. It now (fingers crossed) looks as though the issues with ventriculomegaly and corpus callosum will probably not require any intervention beyond occasional monitoring. <Phew!> Somehow abdominal surgery sounds so much less scary and overwhelming than neurosurgery.

Basically, we’re just rolling with the punches and taking things one day at a time.  It's been an insane amount to process. At the same time, we have so many reasons to be optimistic about little seedling’s future, not least her evidently badass baby nature. H’s words really were prophetic: she's a little barricade stormer.

With all this monitoring, (and because it seems Lovely Doctor is a sucker for a photogenic fetus) I am also pretty sure she may already be one of THE most photographed children in the history of the British Isles. To that effect, I leave you with one of my favourite recent images, highlighting her already chubby cheeks and pouty lips at just 24 weeks.

One beautiful baby. Not that I'm biased or anything.

How could you not love that face?

The flood and after

The long, grey winter that is finally, slowly receding from these shores was the wettest since 1766, so they say. No beautiful snow for us this year (though we’re now too far south to have enjoyed it anyway). Temperatures were relatively warm, but for weeks on end, there was nothing more than sheets of downpour seemingly intent on scarring the landscape. Gale force winds. Flooding of biblical proportions. Destructive deluge. Many people lost power and homes and livelihoods. Entire regions of the country were isolated by caved in roads and rail lines.

We were always just on the edge of it. That lovely park just two doors from our flat? It was submerged, cut off, its beautiful lawns becoming a sodden, grey mess of clay, its gates locked against visitors for weeks on end. The pools of water crept ever closer to our door, but we were spared.

We couldn’t take our usual strolls or shortcuts to work through the park (or anywhere). It became an epic task to get to the nearest supermarkets (we don’t own a car, and even those accessible by motor vehicle experienced flooding and periodically had to shut their doors), so we used creative means to clear out the cupboards, and then ate a lot of crap take-away when we had exhausted that supply. We hibernated and instead occupied ourselves with all the simple pleasures one is supposed to enjoy as the rains pummel the windows from the leaden sky, while you watch the drops trickle down the glass, tucked up cosy inside and grateful for your shelter.

We drank cups of tea and hot cocoa and re-visited long abandoned projects of writing and artwork and compiling music playlists. H stuck in and worked like a demon on his thesis, now only weeks from completion. We became avid Olympics watchers and mock rivals as we cheered our respective teams, the apex of which was a face-off between the Austrian and Canadian men’s hockey teams on Valentine’s Day. I made multi-themed red and white, heart-shaped cookies incorporating a kind of amalgam of the Austrian and Canadian flags – the perfect emblem of trans-cultural love rather than rivalry. (H, being a realist, gamely cheered Canada to their 6-0 victory. Naturally.)

And we continued to indulge in our relish of this miraculous pregnancy, trying to enjoy what one beautiful friend (a fellow babyloss mom) called ‘all the earthy loveliness of being pregnant in the winter’.  We watched my belly expand. I began to strain under the last of my winter coats that still fit around my increasing girth, and was happy to notice when the chill wind was able to make its way up to my gradually more exposed baby bump.  H felt kicks for the first time. We discussed and contemplated the weighty decision of names for this little girl. We continued with our nightly ritual of reading up on little seedling’s development, and added a few more little traditions to the routine. As the storms raged, we cuddled and loved like crazy on our feisty miracle girl.

And we waited for each new monitoring appointment, (after that dreadful MRI) with a strange and tenuous mixture of anxiety and hope. The doctors continued to locate anomalies in her development, so that the list grew longer and the appointments an exercise in parental torture. And she continued to surprise and delight; not only us but her medical team. She grew and thrived. She kicked and wriggled. She faced each and every challenge with a gutsy defiance.

All those things, she did and she does.

And slowly, the clouds began to clear and the spring is upon us, once again.

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Last week, I walked out the door to head to work, and the gate to the park was, astonishingly, cast open. The waters that once threatened to submerge us had receded. And as I strolled past that beautiful but for now scarred scenery, suddenly they caught my eye: daffodils, snowdrops and crocuses. Bright splashes of purple and yellow amid the still mucky soil.

Invincible spring

They survived. How did they survive?  I thought they would cower from the gale force, wither in the face of winter’s ferocity. I thought that they would rot and die beneath the weight of water that submerged them for so long under merciless torrents. 

I was wrong. Spring is invincible.

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When I first left this space to retreat into my own little world it was in a burst of anger and injustice driven by fear and sadness.  But while I was there, in my own little world, something happened: life found me. When I stopped thinking about what others had, and instead looked around at the space I occupied, I realized it’s pretty damned awesome.  Are the challenges ahead still scary and overwhelming? Totally. We are not out of the woods, and little seedling still has a lot to battle against. But she is so strong, this little fighter of ours, and already she is teaching us so much. About the beauty and power of singularity. About miracles. About being in the present.  About the joy of the unexpected. This is our journey and although it may not look as we imagined it to, we are blessed beyond measure to be here, taking it. After all that we lost, after how hardened I became, I never imagined getting here.  Getting her, or the intensity of the feelings that would accompany the experience.  

After meeting H, during those first tentative talks about The Future and family and all that we wanted, I remember having the distinct feeling that what I wanted more than anything was to grow the intensity of love and discovery and goodness that we shared. To physically expand it, to extend it to another human being. I was never one of those ‘all I’ve ever wanted is to be a mother’ people. H made me want that. S made me a mother. And after a period of such darkness it feels...unfathomable, actually; to be reminded of all that goodness, all that wonder, all that belief in the promise of possibility that we once held and can hold again. Perhaps you can understand when I say that in the midst of the fear and the challenges, there is laughter and joy.

Right now, it’s a joy I find difficult to share with a computer screen. Life feels full. And so I may continue to post only sporadically for the time being. Selfishly, I still want and need the incredible waves of support that you all have and continue to offer during these scary, uncertain times. It is wonderful to have a sense of that huge, global cheering section little seedling has backing her. Selflessly, I think I want to keep recording all the twists and turns because I truly believe we will get our positive outcome and I want to be able to share that hope with others who may be facing these realities somewhere down the road, or right now, silently and alone. 

So posting will continue, however irregularly, as and when I find time for it. And I hope you’ll continue following, as I want to continue following and cheering all of you. You are an amazing bunch whose compassion, love and respect continue to dispel my sometimes pessimistic beliefs in human kindness.

In this very moment though, I think I’ll go take this little girl who is so vigorously kicking me in the ribs out for a stroll. Maybe we’ll walk past the crocuses and breathe the spring air.