Tuesday, May 3, 2011

Original Blog Post: August 12, 2008- More Information

For those of you who have been doing a little research on spina bifida and have been sending wonderful questions, here's some specific information, as much as we know, about Caedmon's case.  He has the myelomeningocele form of the defect, which is the most common but also the worst kind to have.  The 'balloon' contains not just the covering of the spine but also nerves.  We know that his legs have already been affected because he has clubfeet, viewable by ultrasound.  Also, he has some fluid on the brain, hydrocephalus, though it is minimal at this time.  They know that the location of the defect is in the lower portion of the back, which is good news because it means that fewer body functions will be affected.  They will be doing ultrasounds every 4-6 weeks to watch the hydrocephalus and learn as much as they can about the location and severity of his condition before birth.  If at anytime the hydrocephalus becomes too severe they will immediately get him out so as to limit any damage to the brain.  Currently, our biggest prayers for Caedmon are that he would be able to have bladder and bowel control, that the hydrocephalus would go down or disappear (which is not unheard of), and that his legs would be as minimally affected as possible.  We're also praying that the 'balloon' would stay small as he continues to grow and develop.

There is a possiblity of doing intrauterine surgery, surgery before the baby is born, but it is still very controversial and raises the risks for both Caedmon and myself.  Also, the way the study is being run now, 50% of participants receive the surgery and 50% go through the normal, traditional surgery.  Adam and I have made the decision not to pursue this option. 

We meet with the neurosurgeon, who will be performing the delicate operation of placing everything back into the spine and closing the spine, at the end of August.  We have our next ultrasound mid-September along with a tour of the labor/delivery facilities at Abbott Hospital in Minneapolis and then a tour and meeting with the neonatologists at Children's Hospital's NICU.  It's located across the street from Abbott.  Caedmon will be transferred there at birth for the surgery. 

As we learn more, I will update the blog.  Thank you so much for your kind words and, most especially, your prayers!  We are moving into the acceptance phase and are anxious to learn as much as we can to be prepared.  One of our biggest concerns has been whether or not to stay in the pastoral position Adam is currently holding because of financial concerns for our family.  The conference here has been extremely supportive and wonderful as well as our team of planters!  We're so thankful for God placing us here at just this time!  Please continue to remember us in your prayers.  We are so grateful to have a strong support network!

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