It turns out I have a lot more to say about parenting in the abstract – having branded myself, officially, as a Mummy Blogger (ugh) I’m all of a sudden at a loss for words.
You guys, I am never at a loss for words.
So I decided to go for it.
The girls at about three weeks old (34 weeks gestation)
I’m writing this because even three months removed from the actual pregnancy, it looms over me, as I imagine it does for other women (and men, and people) who have dealt with a scary or high-risk pregnancy. I would have loved to read my story six months ago and I would love for it to be a source of strength for families at a different stage of their own experience.
Lucky you, though, I decided to save miscarriage and the NICU for another day.
In February I gave birth to two extremely tiny identical twin girls, Fiona (at 1.3 kilos or 2.9 lbs) and Daphne, who weighed in at 820 g (1.8 lbs). They were 31 weeks gestation and had suffered from selective intrauterine growth restriction, or sIUGR. Both were small for 31 weeks, but Daphne was barely on the charts – she was somewhere near the 0.1 percentile, whereas Fiona was somewhere around the 9th or 10th percentile. That is also small enough to be considered growth-restricted, and the NICU consultants told me she was probably also somewhat compromised in utero.
We were diagnosed with sIUGR at about 16 weeks and had weekly ultrasounds to monitor growth and, more importantly, blood flow in the umbilical arteries. The gist of sIUGR is that one baby has a larger share of the placenta than the other, but it is also common for the smaller baby to have a narrower umbilical artery and/or a bad connection between the artery and the placenta. In Daphne’s case, she had a cocktail. She had All The Things. It wasn’t a great situation. Once diagnosed, we had a target C section date of 32 weeks, though I held out hope that we could make it to 34 if we were lucky.
Every week, we would watch the blood flow in the umbilical artery to make sure, essentially, that blood wasn’t backwashing into the artery between heartbeats. When that happens, intervention often follows fairly swiftly.
Things were going pretty well, actually, until the 23rd of December, when I had a bleed. I was 23+6. As my legs shook and the midwife put in an IV, the doctor stood above my bed and said ‘I don’t think we will deliver these babies tonight, but that is just a feeling.’
They never figured out what it was, but after about three hours the bleeding just….slowed, and eventually stopped. I spent the night in Labour & Delivery drinking water, staring at the blue computer monitor, and schlepping back and forth to the toilet. When a nurse in green scrubs brought me tea and toast the following morning, I sat with the tray in front of me and sobbed.
The following week, there was backwash in the umbilical artery and it was time to consider laser ablation surgery. The procedure was effectively a selective reduction. While in rare cases, the smaller twin thrives after connections to the bigger twin are severed, in most cases, the little one doesn’t make it; instead, the larger one gets more time in utero and a substantially mitigated chance of profound disability. Our little one – already named Daphne – was so little that we had to assess her chances of survival at about three weeks behind her gestational date. So when she was 28 weeks, we looked at statistics for 25 weekers.
At 25+4, we went to London to meet with a specialist. The procedure is not performed past 26 weeks so it was absolutely our last chance. We knew the moment might come but it was an agonizing weekend. There was a very real possibility that, without intervention, neither girl would make it. But there was an equally real possibility that both girls would be just fine. There was no right answer, but we went to London having decided that the procedure was the best thing for our family. I was so sure we were going to do it that I had already contacted grief counseling services at our local hospital.
And then, magically, everything looked fine.
My husband had by this point taken to carrying around a thick stack of scholarly articles covered in pink highlighter, and I had taken a case-study approach – I had scoured the internet for similar stories. So it was both alarming and gratifying to see a team of six medical professionals from around the world clustered around the ultrasound machine, all trying to figure out what the fuck was happening in my uterus. Spoiler alert: they decided that 32 weeks was still a reasonable goal, and that 33 was not unimaginable, and sent us on our way. We got Japanese food and almost missed our train.
I’ve tried to be succinct here, so I will skip the part about how I had another bleed, spent another weekend in hospital, got put on monitoring, and then ultimately delivered due to complications entirely unrelated to sIUGR (high blood pressure and reduced foetal movement).
We delivered at 31 weeks via emergency c section, and our girls spent 9 and 10 weeks in the NICU respectively. Despite the fact that that is a helluva long time, they had relatively straightforward experiences, or at least it could have been much worse.
Today the girls are 15 weeks old, or 6 weeks and 2 days, adjusted. Both have begun to smile but prefer to look quizzical, gifting me infrequent but radiant open-mouthed grins. They have largely held their growth curves but I am optimistic that they will nudge up a few percentiles in the next few months. In short: it all sucked but we appear to be coming out the other side. At this point, my day-to-day experience of these babies is like any other woman with six week twins, and the most amazing thing is how quickly the NICU has faded behind us.
If you are a stranger on the internet in the throes of a scary pregnancy, and I can be of use, please let me know.