We might even need two or three. It's a long drive to Boston.
Yes, Boston. Bean town. The Hub. That's where our little Zelie's adventure is taking us next.
You see, here at home there simply are no spina bifida specialists. We've been in the the care of several, very competent and compassionate doctors. We've met more who will be available to us here to help Zelie after she's born. But while they have the right letters attached to their names and the basic training to manage what needs to be done, none of them specialize in Zelie's condition. The more we thought about that, the more dissatisfied we became.
The truth is, the first week or two of her life is very crucial. They will involve serious, complicated neurological surgery on both her spine and her brain. A doctor who is "qualified" is not the same as one who specializes in and who has many decades of experience with exactly what we are facing. We, like all parents, want Zelie to have the best start we can possibly provide for her. What happens to her in those first days will set the tone for the rest of her life. We feel entitled to be picky! We also are greatly blessed to have really wonderful insurance that allows us to act on how we feel. Boston Children's Hospital has the premier pediatric neurosurgeon specializing in spina bifida and the hydrocephalus that typically comes with it. So... its to Boston we go.
We expect to leave around November 8, and stay until she is born and released from the hospital. Of course, we can't predict when that will be exactly. We anticipate staying in Boston approximately a month. Its a big undertaking. There are a lot of logistics in setting up care for our house here in town as well as for Miss K, who will remain behind. J will go with us, and so there is care for him that has to be secured and included. Where to stay, how to get there and back again ... its a lot. And I don't know if you've noticed, but November 8 is just around the corner.
Yikes!
So, first and foremost, we covet all your prayers and your love as we set out on the road.
Secondly, if you have questions about the trip or the procedures, feel free to ask them in the comments. I'll do my best to answer them.
Last of all, several of you have asked us what we need for Zelie. The truth is, as far as baby gear and supplies go, we need nothing. But this trip, which we view as vital, is going to be a huge expense. Insurance will cover the worst of it, but won't help with things like travel and lodging. If you really would like to contribute to Zelie's beginnings you should know that we are going to start a little fund for her. We very humbly ask you to consider placing your gift in her fund, rather than in a dress or a toy. I'll have a button on the site before the weekend, to allow you to do that if you feel so inclined.
I have to admit, it is a little scary, but we are all also very excited. Its good to have made the decision, to have work to do to put it into place and to be able to look at the calendar and see just how close we are at last.
Thank you for all your continued support. We've simply been amazed and overwhelmed by everyone's generosity. Know that we are grateful for all of you in our prayers each day.
Thursday, October 24, 2013
Friday, October 18, 2013
The Sound of Silence
As I predicted it might be, things have been a bit quiet on here. That's good!! We are now at 32 weeks and counting. We've been twice to the doctor since my last post and things are going along very normally.
Miss Zelie is up to approximately 4 1/2lbs, and continues to grow on track. The ventricles in her brain have not become any more enlarged over these last few weeks. That isn't an indicator of things to come, but it is comforting to know that, at least for now, she's not dealing with any increased pressure. At our last visit she earned herself a "perfect score" on her biophysical profile. We will be back there next Tuesday to see if she can repeat that performance.
We do have a couple of possible plan changes in the works, but nothing definite yet. Once we have some specifics, I'll certainly be posting them here, so don't forget to check back every once in awhile.
In the meantime, we continue to be overwhelmed by, and deeply grateful for, all the love and support that continues to come our way. Thank you for being with us on this road.
Miss Zelie is up to approximately 4 1/2lbs, and continues to grow on track. The ventricles in her brain have not become any more enlarged over these last few weeks. That isn't an indicator of things to come, but it is comforting to know that, at least for now, she's not dealing with any increased pressure. At our last visit she earned herself a "perfect score" on her biophysical profile. We will be back there next Tuesday to see if she can repeat that performance.
We do have a couple of possible plan changes in the works, but nothing definite yet. Once we have some specifics, I'll certainly be posting them here, so don't forget to check back every once in awhile.
In the meantime, we continue to be overwhelmed by, and deeply grateful for, all the love and support that continues to come our way. Thank you for being with us on this road.
Wednesday, September 25, 2013
First comes love. Then comes Marriage. Or - How it all started
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.
Stay tuned...
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.
Stay tuned...
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