First of all thank you from the bottom of our hearts for all the prayers. They have been felt for sure. The comfort, support and overall concern that all of our family and friends have shown us these last two weeks has been so humbling!
Since we last posted there have been some scary yet exciting things going on. As we began to research spina bifida and possible treatment options it became very clear to us that we needed to seriously look into the option of prenatal surgery (surgery while I am still pregnant). This option was mentioned to us during our doctors appointment but until we began to research for ourselves we did not fully understand the possibly huge difference it could make in this little one's life, long term.
Currently the typical treatment for spina bifida is "wait until delivery" then correct the defect (which means put the spinal cord that is exposed back where it should be and close him up) 24-48 hours after delivery. With that plan, my pregnancy would continue normally and we would say a lot of prayers and hope for the best after he was born.
But...there is also another treatment option which involves the same type of surgery (correcting the defect) but it is done now, while I'm still pregnant!! There have been some pretty major research published recently that are showing some amazing results from this option including an 80% decrease in the need for shunts (a drain placed in the brain to help drain excess fluid build up, which is common with spina bifida - called hyrdocephalus) and a 40% increase in the likelyhood of walking by age 30 months!! The primary study that was completed concerning this surgery was just published last year - and they actually discontinued the study because the results were so good they felt that it was unethical to not offer the option to any baby who was prenatally diagnosed with spina bifida!!
So here is where we need the prayers....
1st - The surgery is only completed in 3 places in the entire United States.....a hospital in California, Children's Hospital of Philidalphia (CHOPs) and Vanderbilt University Medial Center in Nashville.
2nd - The surgery has to be completed between the 22nd and 24th week of pregnancy (just for referrence, I will be 20 weeks tomorrow)
3rd - It's surgery....while I'm still pregnant....that's scary stuff!! Pretty significant risk of preterm labor along with all of the typical surgery risks
We are looking specifically at Vanderbilt for a few reasons - First it is much closer than the other options. They were involved in the study that I mentioned earlier and are actually the hospital that pioneered the surgery back in 1997. The other major positive to Vanderbilt and a HUGE praise that God has given us already is that following surgery I get to COME HOME and continue my pregnancy under the care of my OB here. (This is huge because CHOPs requires that you stay in the area for the rest of your prenatal care.) I will be on bed rest but I will be home!!
So where are we at now....short version - we're waiting......
longer version - I have been in contact several times with Vanderbilt and have been extremely impressed with the individuals that I have spoken with. They have gone out of their way to calm our nerves and assure us that they will help take care of everything (including a nurse calling me on her day off to help answer some questions that would "make my holiday's less stressful")
They have been faxed all of my paperwork from both of my OB's here in Jacksonville. They will look through that information and as long as there are no red flags they will have us come up for a consultation.
What to pray for:
-We are still awaiting the results of the amniocentesis that I had the Thursday before Christmas. Those results will help us determine if there are genetic concerns with baby boy or just spina bifida. Please pray that the amniocentesis shows only the spina bifida - any genetic conerns could keep us for being a candidate for the surgery.
-We are hoping to hear about the possibility of going up for a consultation in the next few days. Please pray that we do indeed hear, and that it's good news! Then we can move to praying for the logistics of travel, time off work and child care as well :)
-Please start praying for me - those of you that know me well know that I do not sit still well....to say that I am worried about what bed rest for almost 4 months will do to my sanity is probably an understatement. I am going to need a lot of prayers to keep from scaling the walls without a regular trip to Target :)
God is so good and He has been so ever present every step that we have taken since that first ultrasound 2 weeks ago. The peace that we already feel about the entire situation is nothing short supernatural! I know without a doubt that this little guy is pretty special and that he was hand picked by God Himself to complete our family. He has some big shoes to fill and two older brother who are over the moon excited for his arrival!! I know that with God's help and direction, Stephen and I are up for the challenge, whatever that may be. So here we go again, stepping out in faith and asking for his direction as we wait to hear back from Vanderbilt!!
We promise to keep you posted. Again thank you for the prayers! We love you guys!!
Stephen and Kristin