jleonard2004
01-27-2008, 09:44 PM
It has just occured to me that I have yet to post our journey thusfar, so here goes.
May 17th, 2007 we welcomed our second child and only daughter into this world via planned c-section since she was breach and at 40 and 1/7 weeks. She was beautiful, long, and a healthy 8 pounds. I knew looking at her something looked wrong about her head, but thinking that it was just the fact that she was c-section where our son was vaginal, I dismissed the thought. My fears were renewed two days later, when her pediatrician stopped in to check her over in the hospital. We were immediately contacted for a referral to WFUBMC in winston-salem to see a geneticist.
The visit was tense and Mike and I were both miserable as she explained what it most likely was and that it might or might not be syndromic, so they took blood and set us up with the pediatric plastic surgeon in the hospital. After another agonizing wait and some scans we were told the geneticist was completely right, that Katie had bi-coronal craniosynostosis.
I just don't think I've cried this much in my whole life. So we immediately started discussing surgery options. Eventually settling on spring-mediated surgery, we set a date....September 26th.
The surgery came and went and I think my husband and I found renewed strength watching Katie endure and survive something that would scare most adults into a retreat. Watching her smile the day we came home and seeing her become her old self again even with all she had been through was more than we could have hoped for. But alas, it was not to last.
We had a recent visit, maybe not a month ago, where the surgeon decided the springs "didn't work" and now wants to perform additional surgery to compensate. This of course made us extremely nervous and we had our pediatrician set up a second opinion visit with another semi-local pediatric surgeon who is also familiar with craniosynostosis. Just looking at Katie he had NO idea that she had already had one surgery, he thought we wanted a second opinion on what to do about her first surgery. Our hearts sank and we listened in shock as he said that it really didn't seem that her first surgery did any good, and she was a good candidate for a total CVR. We rode home in near silence, comtemplating what to do and set up yet another appointment with her pediatrician(who bless his heart is a patient and wonderful man), who told us our best bet may very well be to go with this new surgeon, since the surgeon who originally did this is an "innovative"(and I use the word only to be nice about it) and the second surgeon is a traditionalist with a lot of confidence in his work and a great reputation.
And that's basically where we're at, making the choice, waiting on our second surgeon to call monday, just lost basically. I'm hoping this time, we can just help her get through it all and it finally be over for her.
BTW, thank you for letting me put this here, among all these other stories, that are such an inspiration for someone just starting out, I know I don't post much, but you guys have been more help than you know.
Also, I would post BNA pics, but I have no idea how...
May 17th, 2007 we welcomed our second child and only daughter into this world via planned c-section since she was breach and at 40 and 1/7 weeks. She was beautiful, long, and a healthy 8 pounds. I knew looking at her something looked wrong about her head, but thinking that it was just the fact that she was c-section where our son was vaginal, I dismissed the thought. My fears were renewed two days later, when her pediatrician stopped in to check her over in the hospital. We were immediately contacted for a referral to WFUBMC in winston-salem to see a geneticist.
The visit was tense and Mike and I were both miserable as she explained what it most likely was and that it might or might not be syndromic, so they took blood and set us up with the pediatric plastic surgeon in the hospital. After another agonizing wait and some scans we were told the geneticist was completely right, that Katie had bi-coronal craniosynostosis.
I just don't think I've cried this much in my whole life. So we immediately started discussing surgery options. Eventually settling on spring-mediated surgery, we set a date....September 26th.
The surgery came and went and I think my husband and I found renewed strength watching Katie endure and survive something that would scare most adults into a retreat. Watching her smile the day we came home and seeing her become her old self again even with all she had been through was more than we could have hoped for. But alas, it was not to last.
We had a recent visit, maybe not a month ago, where the surgeon decided the springs "didn't work" and now wants to perform additional surgery to compensate. This of course made us extremely nervous and we had our pediatrician set up a second opinion visit with another semi-local pediatric surgeon who is also familiar with craniosynostosis. Just looking at Katie he had NO idea that she had already had one surgery, he thought we wanted a second opinion on what to do about her first surgery. Our hearts sank and we listened in shock as he said that it really didn't seem that her first surgery did any good, and she was a good candidate for a total CVR. We rode home in near silence, comtemplating what to do and set up yet another appointment with her pediatrician(who bless his heart is a patient and wonderful man), who told us our best bet may very well be to go with this new surgeon, since the surgeon who originally did this is an "innovative"(and I use the word only to be nice about it) and the second surgeon is a traditionalist with a lot of confidence in his work and a great reputation.
And that's basically where we're at, making the choice, waiting on our second surgeon to call monday, just lost basically. I'm hoping this time, we can just help her get through it all and it finally be over for her.
BTW, thank you for letting me put this here, among all these other stories, that are such an inspiration for someone just starting out, I know I don't post much, but you guys have been more help than you know.
Also, I would post BNA pics, but I have no idea how...