Saturday, March 27, 2010

The Waiting Game

Thanks for all of the comments & everyone checking in. I haven't updated because, thankfully, there's not much to report. We continue to play what I've come to think of as the 'waiting game.'

Luke is doing really well. He's back up to birth weight and nursing well. We're not seeing much different newborn behavior than we remember seeing with Ben - well except for the fact that Luke sleeps and Ben was NOT a sleeper. So of course instead of appreciating a sleeping baby I over analyze....something I'm going to have to get control over. Every weird sound/movement he makes makes me tense up and wonder if something is coming...Babies, as we all know, make a LOT of weird sounds and movements!!!

Next week he has his first OT appointment and I believe PT, too. I just found out that they come to our house which makes life a lot easier for me! I'm really interested in finding out what they will do with a two week old! We also have our initial evaluation by the First Steps program to see what kind of services Luke will qualify for.

Otherwise we're just adjusting to being a family of four. I thought when I started this blog that you would be able to sign up for e-mail updates when I update the site - but that is apparently not working. If anyone knows how to tell me to adjust that, let me know. I was hoping it was something you could just get an e-mail from when I had news....

Saturday, March 20, 2010


We are HOME after a completely & totally uneventful hospital stay!! Yay! Luke has been sleeping, ummm....ALL DAY!! It doesn't look like the beginning of a very sleeping night but we'll take it!
We have some appointments coming up with OT & PT. We also will be meeting soon with First Steps. We found out today that Nurses for Newborns will also be visiting us. We are thankful for any help we can get to assure the BEST for Luke. I'll keep you updated as we find out more about Luke and how BFPP affects him. Right now we are totally enjoying our newborn as the neurologist keeps reminding us to do!
Thanks again for all of the kindness you have all shown us. We are feeling like very lucky people right about now!!

Friday, March 19, 2010

Better and better!!!

Everything is going so much better than we ever expected!!! We finally have Luke in our room with us - just us! It's perfect. It was a long afternoon waiting but they were trying to finish up all the testing on him in the NICU. This poor little guy has had a LOT of pin pricks but he's handling it like a champ!
Our neurologist did a final check up this morning and still had nothing important to note - yeah! Someone at Children's set up our initial appointment with him in June when we'll also start meeting with OT and PT. They also set up his initial pediatrician appointment next week. Someone else is getting us set up with First Steps which is essentially, from what we understand, a service that comes to your house and decides what special needs your child has and does treatments such as OT and PT and other evaluations. I cannot believe how much help we have had. In our first meeting with the neurologist, neonatolgist and our nurse they kept stressing that we were not alone in this. In my mind I was thinking that it was easy for them to say that but they don't go home with us!! Now, I totally see what they mean. The support we have received here at Barnes & Children's has been absolutely amazing! I NEVER dreamed they would go out of their way to help us cover ALL of our bases and really support us. It has made this week so easy and we are so comforted.
He still hasn't really met his brother yet for more than a minute - which might be safer for Luke!! Hopefully that will happen tomorrow either here at the hospital or at home. We're not sure when we're being released yet.
Thanks for all the prayers and kind words. Keep it up - it's obviously working!! We are excited and looking forward to our first sleepless night with our little guy!!!

Thursday, March 18, 2010

No news is good news!!

Everything is going so, so well! We met with the neurologist & pediatrician today. The MRI did show that it is indeed the bilateral frotoparietl polymicrogyria. We were expecting that news. What the MRI also showed was that there was no other damage in his brain area. It does not look like it affects the back part of his brain or the inner parts. Also, his brain stem appears to be normal - as I was researching I saw several indications that a lot of PMG kids have smaller brain stems. This doesn't change his dianosis and the challenges that lie ahead but it feels so good that he's been given such a strong and healthy start. It is comforting to know that other areas aren't affected and we continue to remind ourselves that while we never wanted to hear this news - sooner than later is better so we can start supporting him.
He continues to show NOOOO signs of seizures and he is eating very, very well!! Everyone says he looks like a 3 month old and as I hold him I cannot believe this huge, perfect human being came out of my tummy YESTERDAY!!!
BEST PART OF ALL!!!! Luke is being released from the NICU tomorrow to come stay with us!!! NOT in the NICU at Barnes but WITH US!! We'll have to move rooms but that is OK! We are both really excited.
You have no idea how comforting it has been for us to read all of your words of support & love both with the comments and e-mails we've been getting. We are really feeling lucky to have such wonderful family & friends in our lives!!
Love, Mel

Wednesday, March 17, 2010

Our Lucky Luke!!

He's here!! He decided that it was time to make his grand entrance yesterday. Well, really, today. He was born at 1:58 a.m. Weighing in at a hefty 9 lbs. 8 oz. and measuring 23.5 inches long, Luke came out howling!! I was so relieved to see him, hear him and be able to hold him.

The team at Children's was amazing. There were A LOT of people on hand to greet Luke and check him out. They were worried about seizures because he was making some funky movements with his hands so he did get carted off to the NICU pretty quickly.

He is doing really, really well!! He is able to eat so as far as we can tell - no swallowing issues. It looks like the weird arm movements were just the weird arm movements of a big, big boy shoved into a tummy not meant to hold that heftiness! Eeek. He is not showing signs of seizures!! It is everything I could've hoped for. I believe that these things could appear at any time but right now they're not there. Another victory....At this point he seems like a typically developing newborn - a HUGE typically developing newborn!!

I finally got to go see him this morning at 10:30 and he was on his way out for his MRI. The nurse was really sweet (or just felt bad for this crying, crazy mom) and let me hold him for a few minutes before they took him away. I was having some issues with blacking out today so unfortunately I didn't get my chance to go see him again until about 6:30 tonight. But then I had all kinds of time with him!! It was great!!

He did have both of the tests that they wanted him to have today. We haven't been able to catch up with the doctors yet - largely due to the fact that I was confined to my room. Boo. We are hoping to talk to them tomorrow and are hoping for either good news or no new news.

We are so, so happy with the way things are going at this point. He is beautiful and strong and we couldn't be more proud to have him in our lives. I'll keep you updated after we hear any news from the doctors....Fingers crossed!!!

Friday, March 5, 2010

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!