If you're here, you probably already know most of this but I wanted to summarize where we've been thus far, if only for myself and to give us a place to start.
In late spring, D and I realized we were expecting again. We were a little giddy about it, to be honest, because, well baby. And also, we weren't sure such a blessing was possible after J. An early sonogram to date the pregnancy gave us a due date of December 9. While I'm skeptical about this date being achievable since my kiddos all tend to be early, it is also my father's birthday and the day after Our Lady's feast. This, to my mind, seems an extra blessing.
In mid-July I have some trouble with my left leg. To rule out something serious like a blood clot, on the advice of our midwife, we pay a visit to the ER. The leg is fine, definitely not a clot. More, the sonographer who imaged my leg offers us a very unofficial gender peek at our baby. Girl!! Her daddy's face shines with the news. For two days we relish this secretly while we wait for the official sonogram to verify.
The following Monday, at 19 weeks, we visit the doctor's office for the official "anomaly scan". Definitely a girl but also, we're told, some unknown thing is wrong with our little Zelie's brain. A bizarre visit from start to finish, a doctor we've never met tells us repeatedly he doesn't know anything about anything about what this means but it seems serious, and maybe even fatal. We're told we'll be given a referral to a perinatology practice in town. They are wonderful, so everyone says. They will know what to do.
Our referral appointment is two weeks away. We wait. I read everything I can find about possible brain anomalies detectable in utero. Its fascinating and sad and otherworldly all at the same time. When I wonder out loud just what it is His Majesty has in store for us, my spectacular husband says simply "Whatever is best for us." He will forever be my hero for that.
The two weeks pass. We present ourselves for our appointment at the new doctors' office. Everyone was right. They are quite marvelous and they do understand what is happening. They deliver Zelie's diagnosis, Spina Bifida, factually, without drama or dire predictions. They assure us this is actually common and offer us lots of options to consider, again factually, respectfully and without prejudice. For myself, when I hear the actual diagnosis my first thought was "That's it? But that's easy!". Of course it isn't easy, but compared to many of the other possibilities out there, to the dire predictions at our previous visit, it seemed like an absolute gift.
From that point to this, not much has changed. Her defect is low on her spine which is very promising. She moves lots including lower legs and feet. That also is very promising. The build up of fluid on her brain, common in this condition, is quite mild. She continues to grow at very normal pace and gives every indication of being otherwise totally healthy. Tests for other abnormalities have all been negative.
The spectrum of possibilities for her ability/disability is broad. None of it is knowable from here. All there is for us now is to wait. When she is here, we will see. There will be surgeries and tests and it will take more than a trip or two to the doctor to understand what will be possible for her as she grows. Our hope for her is a quick recovery from her back closure, the possibility of being shunt free eventually and only moderate bladder and bowel issues. For those who are curious, her mobility doesn't bother us. Whether she is able to ambulate naturally or requires some fancy gear, we know she will be able to get wherever she needs or wants to go. And hey, don't forget, dad is an engineer. The idea of "gear" is not without it's charm in this house!
We've visited other specialists that will be involved, neonatology and neurosurgery in particular. Our pediatrician is aware and has worked with many other such children. We've toured the NICU at the hospital and started making lists. My doctor has agreed to allow Zelie to be born naturally, barring some emergency situation. That, frankly, is a miracle. Its something he admits never having done, but something he seems comfortable supporting. We are deeply grateful for his care, his willingness to listen, his frank and generous manner.
As I write this we are 29 weeks along. We will be back in the doctor's office on the 15th and every week thereafter until our sweet Zelie is born. There will be sonograms every week, which is always a little exciting. I'll post updates here as I have them, but no word just means things are going along as they should. Its nice to finally be at a point where the medical is, for the time being, stable and we can simply focus on the delight of soon welcoming a new spark of love into the world.