#Microblog Mondays: Seasons

So, April.

I've been kind of hanging suspended in this kind of slow-mo, hazy bliss the last few weeks. You know, those moments where the rays of sun slant in at an opaque angle and you can almost hear the perfection of the world in all its idiosyncrasies, thrumming around you?

That's where I am. Noticing the details. Awe-inspired by seemingly everything; the lazy buzz of a fat bumblebee; the taste of that strawberry basil gelato the cafe 'round the corner is peddling; the smell of rain as it hits the warm pavement; the fact that I am mother to a vibrant daughter. A daughter who is nearly one.

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We seem to have skipped spring altogether this year. It snowed on the first day of Pesach and on Easter Sunday.

Last year during the Easter long weekend I was hospitalized in the Labour and Delivery ward with worrying symptoms of a suspected pulmonary embolism, told I could lose both my own life and that of my then-unborn daughter. I was discharged with a confirmed diagnosis of pre-eclampsia, after spending a scary, sleepless night alone. (I told you it was a crazy time, I just never found the wherewithal to explain exactly how.) I had sent H home to bank his sleep before the new parent onslaught began; that night before he left he leaned in to my belly and whispered, asking our little seedling to watch over her mama that night, our roles reversed after long months of me caring for her. She duly obliged, kicking and rolling all night inside me, keeping me company through those long, dark hours. I was struggling hard to breath, panicked, feeling like a huge weight was pressed to my chest; it was this together with elevated proteins and white blood cell count that made them suspect pulmonary embolism. Looking back, I wonder how much of the trouble breathing could have been trauma-induced: a final, terrifying chapter in a pregnancy after loss beset with worries.

With Girl Wonder somersaulting her way through the night, reminding me I wasn't alone, I finally felt settled on her name. I had been sitting on the fence about our shortlist, but H was lobbying hard already for the name we eventually chose, a very traditional one that means hope in Hebrew. 'She owns that name', he said; a kid with her back story was hope personified, he said. Through that night as she brought hope and strength to calm my fears, I couldn't help but agree. I told her so and felt a tiny thump. It was final then.

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And after snowfall and temperatures that have kept us hibernating for long into this spring, it's suddenly strappy sundress weather. Summer bypassed us last year; it was a grey, English washout of a summer, not that we would have been able to enjoy it had the sun shone. We spent most of the season in sterile hospital rooms breathing stale air. I remember looking out at the leaden sky from Girl Wonder's isolation room on the 10th floor PICU. I remember poring over journal articles trying to come to grips with the CMV diagnosis that had wracked her tiny body, feeling as though we were about to become the punchline of some cruel cosmic joke, getting through that whole pregnancy only to have our longed-for child taken from us by a random infection. I remember subsisting on little sleep and bad coffee, donuts and hash browns from the hospital canteen.

This year, we are looking forward to summer holidays in Italy; to trips in Hungary and the Alps; picnics in the city's parks. With our one year old daughter.

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During all those long years of loss, infertility and loneliness, I often comforted myself with the thought that life can change profoundly and unexpectedly in a single season, in the blink of an eye. 'Everything could look completely different this time next year', I told myself, hoping it might be for the better.

But even now, living in the laughter-soaked truth of that adage, I can hardly believe my luck most days. 

Written as part of Mel's Microblog Mondays. Check it out here to participate.

 

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.

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

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.

After the MRI

You'll have to excuse me if what follows is incoherent and all over the place. I'm all anxious, hepped up nerves, and yet don't seem to find any energy or concentration for even the simplest tasks at the moment.

The short version is, the MRI didn't go well. Although they didn't find any further anomalies or missing anatomy (a risk with this diagnosis) and in that respect the report was consistent with the u/s last week, little seedling's ventricles have increased in size in a matter of only five days, a rapid progression of her condition that means the 'this might be nothing' scenario is no longer likely in our case. Of course, we still don't know what it actually might be. But suddenly, things like C-section delivery as early as 32 weeks and/or the need for neurosurgery only hours after birth are being discussed...still without any indication of the long-term prognosis (which could, at this stage, include major medical needs and/or developmental delays).

It's all so fucking overwhelming and terrifying. I've gotten so used to all the poking and prodding and invasions of my own body through the course of my life - not only in dealing with loss and infertility, but long before that with years of cancer and orthopaedic treatments. I can undergo whatever unpleasant procedure, for myself, of my own accord, without batting an eyelash. But the thought of my sweet girl having to experience even a moment of pain or suffering, never mind spending the first weeks or months of her life in a NICU, have been keeping me up sobbing every night this week. H says that we need to focus on the here and now, the positives in front of us, and not let our fears run away with us, and he is right. But it's such a struggle right now, every minute of every day. 

When we lost S, one of the only comforts available to me was the knowledge that he had slipped away quietly and peacefully, like a whisper. He didn't suffer, and inside my belly he was so surrounded by love and hope - all we had at the time, before everything went to hell in a hand basket. I'd like to think he felt, exclusively and intensely, that love and hope. There was no time for us to grieve or worry until he was already gone. But now, with his little sister, I can't stop thinking about how hard this all is on her,  the possibility of her having to come so early and be vulnerable and live in a hospital bed; all the pain she might have to experience only moments after birth, and perhaps even for a lifetime. The stress I am placing on her now when my nerves take over. The fear that is was something my crappy body did, the awful, disfigured genetic legacy I seem to pass on to all my offspring.

I've had literally dozens of MRIs in my lifetime and never thought twice about them. But this week, inside the dark narrow tunnel as the magnets whizzed around us and I felt her moving in protest at the weight of the restraint they had placed on my belly, I worried irrationally at the risk this might pose to her. Such a small but significant reminder of how perspective and relative position can change in the blink of an eye. I think of how my own mother coped with seeing her child undergo numerous life-threatening treatments. In my teens though, I was the kid who mysteriously overcame a terminal prognosis in my very aggressive and recurring cancer. The miracle kid.

Not for the first time, I wonder if perhaps asking for more than one miracle in a lifetime is just too much.

It is un-fucking-believable to me that we could overcome years of pain and loss and heartbreak to finally be given hope only to have it cruelly snatched away again for a whole new reason completely unrelated to infertility and loss. All that familiar pain we've become expert at, I know how to deal with it; this feels like terrifyingly new territory. I am among the 1% of women who experience three consecutive miscarriages without a live birth. And now, in another random turn of events, our long-dreamed of miracle baby is facing a condition which affects only 0.1% of babies. Really? Wasn't one of those terrible odds enough for us to deal with, you nasty, bullying universe?!?

I'm angry and sad and terrified at a time when I am supposed to be enjoying the growing life within me and looking forward to a happy future. I can't do this again. I can't lose her too.

I'm also thinking about calling time on this blog, at least for now. I feel so far outside the curve of experience within this community that I'm not sure sharing here offers me much comfort at the moment. And if I'm truly blunt about it, it makes me really uncomfortable to potentially be that person others look to when they think to themselves it could be worse. (And it makes me dislike myself that I even think those things.) But clearly people don't know what to say. My last post, on the diagnosis, has quickly become the third most read post my blog has ever seen. Upwards of 500 views, and yet so few have actually stopped to offer a thought. (And for those of you who have, I continue to say, your love and support right now are so felt and appreciated.) But likewise, I don't feel like I can offer much in the way of support to others right now. All the ugly envy and anger and complete inability to engage with happy stories has resurfaced, and I need to work hard right now, for little seedling's sake, to focus on positive energy. I'll probably check in with any big updates, but right now it's all too much and while in the past this space has been a wonderful outlet for processing my tangled thoughts, I'm not doing a good job of articulating myself anyway. I'd like to think there may be some function, at some point, for this space to offer comfort to other parents who are searching and feeling afraid and alone.

I feel very much alone and so so scared. But H is right; right now I need to concentrate all my energies on hoping for my baby girl, drawing as much love and good energy around her as possible, and relishing her every kick and whirl and her regular growth, which seems unimpeded by her condition. As hard as this is for us, it's she who has the biggest job to do right now, and we need to believe in her and offer her calm and strength. And you all said it best: she is a fighter, our daughter. Our daughter; it still feels like a miracle that I get to say those words.

And so we wait. And we hope. Because there's not much else we can do.