Update 1/24/14

Dearest Baby Girl,

Yesterday we had a full day! Mark had a Biochemistry test in the morning that we were both concerned because he hadn't had much time to study, and missed a lot of class for appointments. But he put forth his best effort and Heavenly Father blessed him. He passed! Woohoo! (He has to get at least a 90% so it's no easy feat.)

Afterwards we headed up to the U of U Hospital to meet with the geneticist/ high risk pregnancy specialist, Dr Byrne. We were supposed to meet with the pediatric neurosurgeon to discuss surgery options. Unfortunately he wasn't able to make it due to 3 emergency surgeries that popped up on his schedule. Talking to Dr Byrne we talked about the severity of your spina bifida. She says according to the ultrasound you have myelomeningocele, which is the most severe degree, also you have a little bit of fluid on your brain (anything less than 1 cm is considered normal and you only have 1.2 cm) but that usually doesn't come until later anyways. As a product of myelomeningocele you also have what they call the chiari II formation. Which just means that your spinal cord has been pulled on from the spina bifida which causes your cerebellum to be elongated and shaped a little differently because of this you might have difficulty breathing, swallowing, eye movement, and weakness in your arms. The Chiari II malformation is very common in your degree of spina bifida. However, she told us we might be candidates for fetal surgery. It's hard to say 100% until the neurosurgeon can take a look at the MRI. (Side story: We went to get the MRI right after meeting Dr Byrne and you were not happy one bit,  and you made sure I knew that. You are definitely your father's daughter, because you kept kicking me well after you were done. The MRI techs told me you were giving them a hard time because you were moving around a lot but we are proud of you. It's good for them to have a challenge every once and a while.)  Because the surgeon will be out of the country all next week teaching at a pediatric neurosurgery conference he won't be able to meet with us until Feb 3rd, the day he get's back. Which they assured us would be plenty of time to get everything taken care of. The surgery has to be done before you reach 25 weeks gestation and the earlier the better. Our case manager Paula let us know that if we elect for the fetal surgery it would be getting it done within a week (putting us around 23 weeks). Also, the surgery is only performed in 5 locations in the U.S. Unfortunately, the U of U is not one of them (yet)  so we'd have it done at UCSF (San Francisco, CA). It require that we are at the hospital for 5 days following the surgery and then I have to stay in San Francisco for 2 weeks  following, and if everything goes well and you are thriving, then they'll give us to go ahead to head back to Utah where I'll be on bedrest until you are delivered via C-Section at the U no later than 37 weeks. The biggest risk of the surgery is only 1/5 pregnancies reach 37 weeks. So there are a lot of complications from being premature that would could have to deal with. There are a couple of additional risks but they are only for the mother and I don't really care as much. With each following pregnancy my uterus will be weakened from all the incisions (since the surgery incision won't be in usual places since they are going to slice wherever you settle down) so all your brothers and sisters will have to be born via C-Section. Then there are always complications when anesthesia is involved, especially since both of us will be asleep for the procedure.  However, you will be more likely to have use of your legs at some degree, also, it decreases the neurologic complications from the Chiari malformation because it won't pull as much, and you could potentially not need a shunt placed although it is still very likely. Another positive is that currently your legs are perfectly formed and not clubbed yet so  we could prevent it as much as possible. However, if we elect to have the surgery after birth you will at least make it full term and they could fix your back, place a shunt, and not have to worry about underdevelopment of other body systems. One thing is for sure you will be born end of May no matter what because they won't allow you to keep "cookin'" past 37 weeks.

We have some big decisions coming up and pray that we will do what's best for you. Heavenly Father has been continually blessing us and is very aware our little family.

All my love,

Mom

P.S. Keep kickin' those legs, I don't take any of them for granted. :)