So right

So yes, I am totally that cliché. My communications post-baby have faltered, and I no longer feel like I have the time to post regularly, never mind constructing lovely sentences to adequately convey our here and now. I marvel at those mamas who continue to post with regularity through early parenthood. There are posts I write in my head several times a week. Things I want to say, or record for posterity, or share. The thoughts come, sometimes even the words, but I struggle to find the time and space for such pursuits. Part of me still feels attached to this space and the outlet it has provided, while another part feels it is inextricably linked to a past from which I've been wrenched by these momentous past months. Months that were sometimes horrendous, but which have become filled with delights large and small with increasingly regularity.

And so I find myself back in this space to update on one such of the larger variety. Girl Wonder had her first long-term follow-up appointments last week, at a new hospital, to review both the situation with her ventriculomegaly and the possible consequences of the CMV. We knew this was coming but in the final delight at having her home, have tried to leave it to one side as we enjoyed family life for the first time.

In brief: everything looks wonderful. Her heart scan showed only minor anomalies (all of which are resolving as they should), and her brain scan found no signs of calcification, while her ventricals are measuring at the right size and growth rate for a baby of her size and age. We were thrilled. Prosecco was consumed at yet another chance to celebrate our amazing wonder of a daughter.

On leaving the hospital, having arrived with the first light of day for an early appointment and spent many long and anxious hours into the afternoon awaiting procedures, transferring clinics, and then waiting again for meetings with specialists who would interpret all the results for us, we were exhausted and elated. There was the briefest of moments when we looked at one another and felt a strange kind of disorientation.

H turned to me and said: 'Do you realize this is the first time in what feels like forever that we came to the hospital and received nothing but good news?  

It's true. Almost from the start, hospital visits kept throwing us for one loop after another. I think part of us both expected someone to say: 'I'm sorry, but we're going to have to admit her again'.

But they didn't. And she's doing awesome. The experience did indeed feel a bit (delightfully, intoxicatingly, ecstatically) strange.

I was reminded of that Paul Simon song. To paraphrase: getting used to something so right is going to take some getting used to.

And that's an endeavour - short as we are on time these days - that we will joyfully run towards.

 

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

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?

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.
 

This much I know

Firstly, I want to thank you all for your patience and love and support. The many comments and emails I received this week, even if it was only to say 'thinking of you' have made me feel so cared for, and more importantly, that little seedling has an awful big cheering section in our corner.

I'm sorry if I left you all hanging after my little cri de coeur; I needed time to breath out the fear, breath in hope again and collect my thoughts. I wish I could come here today with more optimistic or conclusive news to share. I really do.

The good news is, little seedling almost certainly does not have Downs syndrome. The bad news is that the reason we can be 99% sure of that is because the doctor found a brain anomaly which is generally inconsistent with Downs. Brain anomaly: the words alone were enough to send us into a fucking unbearable, terrorized tailspin. Usually when you hear those words, I think of them as associated with  another phrase: incompatible with life. I have supported enough other moms through this awful scenario not to let my brain go there. I know too much.

But this time, we are lucky; the condition is not life threatening. Little seedling has been diagnosed with fetal ventriculomegaly, in which the lateral ventricles of the brain are enlarged. The condition effects approximately 1 in 1000 otherwise healthy pregnancies, and there is no known cause (in our case, let's chalk it up to shitty random universe speak: these people haven't had quite enough drama yet in making a baby, and anyway <disinterested shrug>, we know they can take it. Keep piling!). Depending on its progression throughout pregnancy, ventriculomegaly can be linked to a whole range of developmental complications before and after birth or...it might mean nothing. There is so little to go on right now, and we were told the next eight weeks will be crucial.

We have a new plan of action, as this pregnancy is ratcheted up from high to high high risk. Tomorrow, before the first rays of the new day dawn, we will awake and travel more than three hours to a specialist centre where a fetal MRI can be performed. This will, it is hoped, give a clearer picture of what else is going on in little seedling's brain. So far, everything else looks normal, which is a really good sign: it puts us on the 'mild' end of the spectrum for this amorphous diagnosis. In fact, all the other organs, according to the geneticist, looked 'perfect'. If things stay this way, we very likely have nothing to worry about. The ventricles could even shrink back to a normal size and the situation resolve itself before birth. Or they could get worse, in which case our cause for concern would be that much greater.

After the MRI we will be followed with bi-weekly brain scans and anatomy u/s; more regular appointments with the geneticist as well as Dr B. All this monitoring is a double-edged sword though. On the one hand, it is of course a great reassurance to know that little seedling is getting the best possible care (and our care team really is stellar) and that this is being treated as the sensitive and emergent issue that it is. At the same time, there is no denying that, well, each u/s appointment, aside from the thrill of seeing little seedling thriving away in there, is a slow and tortuous build-up to the next scary thing. Given my history, I have so much ultrasound PTSD that I don't sleep for days beforehand, and on the day of I feel like I'm going to puke until the very moment when they place the probe on my belly and I see that comforting and still unbelievable movement. Continuing to do this every other week for the foreseeable future? Demanding and exhausting, to say the least. Really, just at a time when we were beginning to think that the high risk monitoring, all the feelings of pregnancy being more scary than natural for us would be replaced by some semblance of routine (ha!), we're thrown from the proverbial frying pan into the fire. The painful irony of preparing for one piece of bad news only to be blindsided by a potentially dangerous not-that-but-this scenario is, well...it is what it is. Scary, still confusing, tortuous, vague, fucking frustrating, maybe nothing.

As I was swimming through the sea of information, research, prognoses, opinion, struggling to keep my head above water and trying not to swallow big gulps of fear, I clung to these two things: not life threatening, and not life limiting. We know so little else. I could spout all the odds and statistics and case studies that the doctor barraged us with, but the end game is always the same: wait and see. Little seedling could be perfectly unaffected by the condition in the long run or might need medical intervention even before birth. We could be looking at a child with zero special needs or almost undetectable ones or those that require lifelong therapeutic assessment and intervention. So so many uncertainties. The waiting and wondering is a special, harrowing kind of agony.

But this much I know.

We are so so lucky. We are grateful beyond measure for each and every day with this little seedling, who wriggles and squirms with an astonishing aliveness that both keeps H and I in the blessed present and thwarts all attempts on the part of doctors to monitor progress, as though possessing a well developed sense of mischief along with her mother's inherent mistrust of white-coated authority.

She is a feisty, strong-willed, courageous, opinionated, unique, determined and stubborn seedling, this tiny girl of ours.

So yes, H's fatherly instinct and the kindly Austrian doctor's educated guess were correct. We are having a little girl. She'll be a barricade stormer, this one, said H, jesting at her unorthodox trajectory, her unwillingness to either cooperate with expectations or relinquish her claim as anything but the central role in our consciousness.

We're in for a ride. We're not really prepared for it, for any of it. But we'll take it.

And this much I know: we are having a little girl. S will have a little sister. We are so very fortunate to have the little unorthodox family that we do. Every day matters. Nothing is certain. And we couldn't possibly be more in love. Nothing changes that.

Girls with attitude. Source