Miss K is doing great, her incision is healing properly and she got her stitches out today. I was worried how she would react, would it hurt her etc, she just kinda of laid there like it was no big deal. :) We return to UAB in 3 months for a MRI so they have a baseline of what her spine is like since the surgery. We were hoping for a 6 month break but I would rather them be thorough and know exactly what is going on with her.
Thanks for the thoughts and prayers!
Showing posts with label spina bifida occulta. Show all posts
Showing posts with label spina bifida occulta. Show all posts
Monday, July 12, 2010
Thursday, July 8, 2010
Two Months Ago
Two months ago, my world seemingly got turned upside down. Two months ago K was born via c-section after trying for a vbac for 12 hours and not really progressing. Today I look back at that and am thankful because we had no clue about K's Spina Bifida. We also do not know if her lipoma could have ruptured or not during birth as it was half filled with spinal fluid. The last two months have been stressful, happy, sad, worrisome and so much more but right now I feel at peace.
K had surgery approx two weeks ago and sometimes I am still trying to wrap my head around that. My 6 week old baby had major spinal surgery. She could have been paralyzed, she could have major bladder/bowel issues, she could have required another surgery to put a shunt in her head. She could have been. She's not paralyzed, had a very short term bladder issue and she did not need another surgery. Miracles happen. Prayers work. Believe it.
When K was 4 days old I found a support forum for people living with Spina Bifida or parents of children with Spina Bifida: Spina Bifida Connection . This was my saving grace. The people there are inspiring, helpful, friendly and most of all been there. To be able to connect with other moms/dads who have been there and done that, to know I am not alone in this journey is priceless. Reading their stories, blogs, and helpful posts in regard to my own situation, I learned so much.
I learned that K having Spina Bifida is not the end of the world, just a different world. Her life isn't going to end or not be fulfilling because she has a birth defect. She will go on to lead a fulfilling life filled with love, joy, friends and family.
I am learning to live in the here and now and not in the future. No one can predict what will happen in the next 6 months, year or 10 years and rather than worry and dwell on it, I am living life and enjoying time with my 3 girls.
K had surgery approx two weeks ago and sometimes I am still trying to wrap my head around that. My 6 week old baby had major spinal surgery. She could have been paralyzed, she could have major bladder/bowel issues, she could have required another surgery to put a shunt in her head. She could have been. She's not paralyzed, had a very short term bladder issue and she did not need another surgery. Miracles happen. Prayers work. Believe it.
When K was 4 days old I found a support forum for people living with Spina Bifida or parents of children with Spina Bifida: Spina Bifida Connection . This was my saving grace. The people there are inspiring, helpful, friendly and most of all been there. To be able to connect with other moms/dads who have been there and done that, to know I am not alone in this journey is priceless. Reading their stories, blogs, and helpful posts in regard to my own situation, I learned so much.
I learned that K having Spina Bifida is not the end of the world, just a different world. Her life isn't going to end or not be fulfilling because she has a birth defect. She will go on to lead a fulfilling life filled with love, joy, friends and family.
I am learning to live in the here and now and not in the future. No one can predict what will happen in the next 6 months, year or 10 years and rather than worry and dwell on it, I am living life and enjoying time with my 3 girls.
Wednesday, June 9, 2010
UAB Appointment Update
Just wanted to give an update on Kaitlyn and her UAB appointment from yesterday. I know most of my blog readers already know all of this but a few do not :)
We saw Dr Wellons on Monday (the pediatric neurosurgeon) down at UAB and overall things went well. Originally we were told Kailtyn had a form of Spina Bifida called lipomyelomeningocele, but yesterday he told us she has Spina Bifida Occulta. She definitely has a tethered cord and he'll have to do the surgery to untether it along with removing the growth on her back. We were told the growth was most likely fatty tissue at HH NICU but he seems to think its more fluid than fatty tissue but I think she is considered to still have it, because she does have the growth and the spinal cord is attached inside of it.
We got to see her MRI and it does show the tethered cord but it also showed that her nerves were still attached which is why she can move her legs/feet so well right now. There is a chance that the surgery could result in leg weakness and/or Kaitlyn not being able to walk depending on if he has to cut the nerves or not.
We go back on 6/16 for an appt with the Urologist and also for her to get a CT Scan. Her surgery is scheduled for 6/22, but we have to be back on 6/21 for the Pre Op appt with Dr Wellons and then we'll stay there for the week.
The CT scan is being done to see if she has any fluid in her head, called : Hydrocephalus right now he doesn't think so but he wants to verify before surgery. If she does they will have to place a shunt to drain the fluid back down, and there is a chance she will need it even if there isn't currently fluid there, due to the surgery (since the growth may be fluid filled).
The surgery is expected to take about 4 hours (if no complications) and the recovery time is atleast 3 days, and she has to be flat on her back the entire time. So we'll be down at UAB from 6/21 thru 6/25 or 6/26 at the very least.
Thank you all again for your thoughts and prayers and please continue to pray for us and Kaitlyn.
We saw Dr Wellons on Monday (the pediatric neurosurgeon) down at UAB and overall things went well. Originally we were told Kailtyn had a form of Spina Bifida called lipomyelomeningocele, but yesterday he told us she has Spina Bifida Occulta. She definitely has a tethered cord and he'll have to do the surgery to untether it along with removing the growth on her back. We were told the growth was most likely fatty tissue at HH NICU but he seems to think its more fluid than fatty tissue but I think she is considered to still have it, because she does have the growth and the spinal cord is attached inside of it.
We got to see her MRI and it does show the tethered cord but it also showed that her nerves were still attached which is why she can move her legs/feet so well right now. There is a chance that the surgery could result in leg weakness and/or Kaitlyn not being able to walk depending on if he has to cut the nerves or not.
We go back on 6/16 for an appt with the Urologist and also for her to get a CT Scan. Her surgery is scheduled for 6/22, but we have to be back on 6/21 for the Pre Op appt with Dr Wellons and then we'll stay there for the week.
The CT scan is being done to see if she has any fluid in her head, called : Hydrocephalus right now he doesn't think so but he wants to verify before surgery. If she does they will have to place a shunt to drain the fluid back down, and there is a chance she will need it even if there isn't currently fluid there, due to the surgery (since the growth may be fluid filled).
The surgery is expected to take about 4 hours (if no complications) and the recovery time is atleast 3 days, and she has to be flat on her back the entire time. So we'll be down at UAB from 6/21 thru 6/25 or 6/26 at the very least.
Thank you all again for your thoughts and prayers and please continue to pray for us and Kaitlyn.
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