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?