So Here We Go!

Our appointment at Vanderbilt was this week. It was quite a trip and I'm still crazy tired from it.

We got several bits of news while we were there, some good and some bad. For starters, the defect starts about 4 places higher than originally suspected, although the skin lesion is still in the same position. We have been told she had severe hydrocephalus (fluid in her head), but at this appointment, they informed us she does not actually qualify for hydrocephalus just yet, as she is only a few millimeters above the normal limit. This is a good sign, although her fluid may build more throughout the rest of the pregnancy. We're hoping to be one of the lucky ones who end up not needing a shunt when she's born, but we're prepared either way. Everything else was great with her: We saw all of her little fingers and toes moving so we're hanging onto that as a sign of hope. Her heart was perfect, and all her pieces/parts were where they were supposed to be. She's an otherwise healthy, chunky baby girl (yeah, they said she was a chunker for her age!). As usual with any ultrasound, she was obstinate and wouldn't hold still long enough to get a good picture of her lesion (self conscious already? Or just rotten?)

So long story short, the doctors think we're perfect candidates for the in utero surgery. They went over all the outcomes and possible risks of the surgery. I'm going to list some of each, so if you don't want to read them skip to the next section (You know who you are!).

 Pros:

• Only 40% of children who had in utero surgery needed a shunt within the first year, versus 90% of the babies who had surgery after birth.
• 36% of children who had prenatal surgery had less evidence of hindbrain herniation (downward displacement of the back of the brain) versus the 4% of those who had surgery after birth.
• 42% of the children who had prenatal surgery were more likely to be walking independently versus 21% of those who had surgery after birth. Also, children who had prenatal surgery had better motor function than what would be expected based on the level of the opening of the back. 

All of these things are enormous benefits, so just remember that as you read the next list...

Cons:

• Prematurity is a given with in utero surgery. The average weeks were 34 with in utero babies, versus 37-full term for babies who had surgery after birth. The effects of prematurity have nothing to do with SB and serious to any baby. Lung function, ability to eat, maintaining heat, etc. are all consequences of prematurity. 
• The risk of pregnancy complications increases greatly. These can include a tear in the uterus, leaking of amnio fluid, and separation of membranes within the uterus. The risks also translate into any future pregnancies as well, always requiring close monitoring and Cesarian delivery. 
• While function can be preserved more for children with in utero surgery, they tend to have to have more operations to fix a tethered spinal cord as they get older and bigger. 
• Of course, this is a major surgery, and there's always the slight chance the baby will not make it, although in all the surgeries throughout the years, they've only lost 3 babies.... We're confident in this number. 

So there we have it.... I'm going to be in a lot of pain, for a good while, but if it gives our little one a better chance to maintain function and be healthier, then we're ready to take this on! So wish me luck and send lots and lots of prayers and love our way! This will probably be my last update until I recover, but I promise to update (or have someone update) my status on facebook and/or my blog.

We love you all!!! <3