Just the beginning...

I am almost 37 weeks pregnant. At 20 weeks my husband, Dan, and I found out that we were expecting our 2nd boy. Given the history of boys on Dan's side of the family, we weren't surprised! We also found out that he (Luke, we later decided) had a very, very large head - also common with those Rush boys. We weren't really concerned but it was large enough for my OB to recommend a meeting with a perinatologist and an ultrasound.

Three ultrasounds and four perinatologists later Luke's head was still growing (now defined as macrocephaly) and they couldn't find any real problems associated with it. However none of the perinatologists that we saw had ever seen a head as large as Luke's without there being a problem. The last set of doctors we saw noticed that three of the ventricles in his brain were slightly larger than they should be. Honestly, I didn't even know that there were ventricles in the brain!! They decided that we should have a fetal MRI to get a clearer picture of his brain. We had pretty much accepted that we were going to get much of the same information after the MRI which was a lot of chin scratching and baffled looks.

I went in for the MRI at Children's Hospital on February 8. By the way - an MRI is not as comfy and easy as it looks on House! That same afternoon we got 'THE' phone call. Luke was diagnosed with an extremely rare brain condition called Bilateral Frontoparietl Polymicrogyria (BFPP). Basically it means his brain didn't form the right way.

Dan and I were both at work and both on the phone. We were stunned. As the doctor talked the only words I was able to write down were bilateral, seizures, mental retardation and developmental delays. At the end of our conversation I came to enough to get the full name of his diagnosis spelled out for me. I've only recently learned how to say polymicrogyria (PMG) clearly!! It's a hard word to spit out!

We spent the evening digesting this totally unexpected news, doing a little research and crying (ok, that may have just been me!). The next couple of days we started filling people in and trying to find out more about BFPP. There's not much out there that's easy to understand. Luckily we had a few friends and a sister-in-law who braved the Internet more than we could to find out some of the down and dirty info on his condition.

Armed with a TON of questions (thanks Amy & Sue!) Dan and I met with a neurologist and a neonatologist at Children's Hospital. We were assigned a nurse advocate, Meg, (I don't know if that's her official title but she was/is awesome) to sit in the meeting with us and make sure the doctors were speaking in common English or she would translate for us. We didn't really learn a lot of new information - better or worse. It sounds like it manifests itself differently in each individual. It's largely diagnosed after birth when developmental delays become noticeable or other problems arise. We do know that it can cause seizures, mental retardation, developmental delays and possible swallowing issues among many, many other things. From what we understand there's no real way to know how it's going to affect Luke until we're living our lives day by day together and see what happens.

Together we decided that the best plan of action for Luke was to change hospitals and deliver at Barnes so Luke could be transferred to Children's NICU shortly after birth. He'll have an MRI of his own so they can get a clear picture of his brain. He'll have a blood test to see if they can determine if it was genetics that caused this to happen (it sounds like the kind he has is largely caused by both parents carrying the same bad gene). They'll monitor him for seizure activity and watch him for any other problems that could arise. The neonatologist didn't expect any big problems after birth. We're hoping that all will go well and Luke will go home with us when I am discharged.

We met with my new doctor today at Barnes (my doc doesn't deliver at Barnes). It's really fun to switch up the whole game at 37 weeks!!! We had an ultrasound that showed that he's still growing (8lbs. 5oz. currently - YIKES) but overall nothing has changed for the worse. I consider that a small victory! The office scheduled the c-section for March 22. We all want to wait as close to the due date as possible to make sure he's fully developed in every way just in case we do run into any problems post delivery.

So now we wait...We wait to see what happens after he's born. And we wait to see how this thing affects our son(s), our family and our lives. We've had an outpouring of love and support from family and friends which has helped tremendously. Hopefully we'll have no more news for the next few weeks. Please keep your fingers crossed that Luke stays put until as close to the 22nd as possible!

Thanks to everyone for your love and prayers. We feel your support and are truly blessed to have such a fantastic army behind us!