What I know...

It took forever to hear from someone-and honestly I have called so many times that they might have just rushed the information so that I would quit calling them. A nurse told me yesterday that the radiologist who specializes in reading fetal MRI's (different from a pediatric radiologist) was not able to read the MRI until 1:00 am this morning and Dr. Heyborne's office got the report at 9:00 am. The doctor who ordered the MRI last week has been in and out of emergency appointments all day and she hasn't had a chance to call me but I heard from one of the nurses and one of the other doctors who is working at Dr. Heyborne's office today.

What I know is not super solid but it is enough for me to share so far. She has Dandy-Walker variant. She has a larger 4th ventricle but NO posterior fossa cyst and NO hydrocephalus. These two things that she does NOT have are very important because it means the difference between Dandy-Walker syndrome or malformation (both have very, very terrible and scary outcomes). She has a variant, which of all 3 types of Dandy-Walker, this is the type that has the best possible outcome. She also has what the doctor called a "mild" Dandy-Walker variant. She said that if this is all it is-and this is isolated (called an isolated variant-which means the outcomes are even better) the baby can be totally fine. As long as they aren't missing anything from the ultrasounds and the extensive MRI, babies generally do well with this variant. I don't know what "mild, well, fine" means when it comes to her development yet and they won't know until she develops either but I do know that those words sound very hopeful and we still need lots and lots of prayers.

Baby A has a normal brain with all parts in place. Dandy-Walker variant is a structural variant (versus a chromosomal abnormality-in which case both babies would have it-which they don't) that occurred sometime during the development of the cerebellum and ventricles of the brain. My guess is they will want to do an amnio just to make sure there isn't any underlying chromosomal abnormalities but the doctors have told me that they don't believe there are any abnormalities.

If you google it, which of course I have-don't mistake the difference between the syndrome or malformation and the variant. It is very scary what information is out there-but it is also important to share that there isn't a ton of information about a variant. My high-risk doctor has set me up to meet with a pediatric neurologist at the Rocky Mountain Hospital for Children at Presbyterian St. Luke's hospital on Tuesday at 2:00. I wish I could meet with someone sooner but they are off for today and they are closed on Monday so Tuesday was the soonest time they could get me in. I am going to work hard on a list of questions so that hopefully I will know more information about what we can possibly expect in the future.

So thanks again for sticking with us and praying for our entire family. I am asking for more prayers for baby B and for our family as we digest this information and try figure out what our future *might* possibly hold. This has been so unexpected and it has felt so unfair but I am ready to move forward with a positive attitude and I will be hanging on the positive words and prayers I have heard. Thank you again. Xoxo