# Chateau de la Tobler

## Tuesday, September 05, 2006

### Our June-bug

Well, I'm finally ready to post some info about our little boy. Couple of things to start--his spina bifida is not the same as Aaron's, but more like Joey's. From what little I know, though, Joey's lesion--the place where the spinal cord comes out of the back--was lower down, and his disabilities are likely less severe than our June-bug's will be.
Our June-bug's lesion looks to be as high as the L1 vertebrae. That's pretty high up, and there is a possiblity that it extends further up (the ultrasound is unclear on that). This means that there is a very very high probability that our June-bug (that's his womb-name) will be paralyzed from the waist down, at least. We already know there is nerve damage, because both of his feet are clubbed. Because the lesion looks to be pretty big, he will have to have surgery to close up his back very soon after birth--probably within hours. This will take place up at Primary Children's Hospital in Salt Lake City--so I will be delivering up at the U of U Medical Center. So far they don't think I'll have to have a C-section, so keep your fingers crossed on that one! Because they don't want me to have the baby down here in Utah Valley--because that would mean a life-flight up to Primary's for the baby--they will probably induce me around 39 weeks, after they check to see if the baby's lungs are developed. Which is right at Christmas--we have such great timing!
June-bug has the malformation of the brain associated with spina bifida--it's where part of the brain is being pulled down into the upper spinal column. This is also associated with hydrocephalus (water on the brain). Either of these can create brain damage, but neither of them always mean brain damage. However, chances are extremely high that June-bug will have to have a shunt drawing the fluid from his brain for the rest of his life. This will mean operations every couple of years at least until he's grown, and then occasionally thereafter.
On the upside, his heart, kidneys, etc, are great. He's measuring about 15-16 days small if the circumference of the head is used, but the perinatalogist doesn't believe that number because of the brain malformation. His torso and femur, though, are measuring right on, so we're still using end of December for his due date.
Anyway, that's about what we know right now. It's been a tough week all around up here in Utah Valley, but I know that with the Lord's help, we can rise to the challenge. I love you all!

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