Today we had our first follow-up visit since learning about Jonathan's Spina Bifida 3 weeks ago.
The exam started with another 30 min ultrasound. Jonathan is in a typical head down position. His face is still smashed up against my uterus, so we may not see clearly how handsome he is until he's born (stinker!) Because Jonathan is getting bigger 2 lbs's (right on track!) it was easier for the Dr. to get a better view of his spine. We are seeing a sacrum level opening. This is VERY good since the higher up the spinal cord the greater the paralysis. Jonathan's defect is very low (kinda right above his butt crack). According to my reading this means "Frequently walks without aides (braces or crutches). May need shoe inserts." His bones and feet also look good (no club feet) which means with physical therapy his progress will be much easier! We will have to wait and see how the paralysis effects his bladder and such but we are encouraged by the low level of damage and we will cross each bridge as we get there.
Jonathan does have a condition called Chiari II malformation. This is when the brain is positioned further down into the upper spinal area (neck) than it should be. This can sometimes block the flow of the fluid that normally moves in and around the brain leading to hydrocephalus (water on the brain). At this point the Dr. sees no extra water, however sometimes the fluid will not build up until later. We are praying this never becomes a problem but if so, it can be treated with an internal shunt that would drain the fluid to his heart or belly. As long as we have the shunt placed, if needed, the Chiari II shouldn't effect his mental abilities. All of his other organs and body developments still look excellent. His heart is beating in the 140's today and looking strong! He is also very active in there, especially if I stretch out flat on my back.
It was good to see our little guy today. We got a good report and a lot more info. At this point I need to decide where I want to deliver. The security of family and friends in Houston has me leaning in that direction. Sadly, no matter where we go Caleb won't be able to take off more than a week or so, but he will be around for the birth! We will probably do the C-section around 37-38 weeks which would be the first week of Feb-ish (this will be decided by the Dr's in Houston at a later date). I'll probably need to fly to Houston and meet the surgical team of Dr's and therapist a few weeks before the birth in mid Jan.
We have another follow-up visit in 4 weeks. I will keep the updates coming.
Thank you all for your prayers and kind wishes! Continue to remember us! It really helps!
Here is a link to more information about Spina Bifida
I am also attaching pictures of the levels of Spina Bifida
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