September is Hydrocephalus Awareness Month. It's interesting that a few months ago we didn't have much to any awareness of this little condition. Last night when we found ourselves at the ER at 1:00 AM with a screaming baby, we were very aware. Aurelia is fine, we're fine, we think everything is fine for now. But last night made us realize how quickly things can become scary. We went from being bleary eyed, frustrated, exhausted parents who hadn't slept for what felt like days to alert and out the door in a matter of seconds. To make a long story short, our little lady had barely slept in the days since we brought her home. We've been told that newborns sleep a lot, but when we started keeping track we realized that our daughter was averaging about 2 hours a day/night. The tipping point is when she started having regular fits that appeared extremely painful and almost seizure like. We know that seizures and hydrocephalus often go hand in hand, so we made the decision to rush to Mary Bridge. As we held our little girl in the ER and talked to the doctors, we watched as she slowly drifted off to a peaceful sleep, her fits become fewer and farther between, and we left the hospital at 4:00 AM exhausted but reassured that it wasn't shunt malfunction or anything more serious than an overly exhausted baby. She slept from the time we arrived in the ER until 5:00 tonight with only a few nursing breaks in the middle (this includes sleeping through a cranial ultrasound).
When we first learned about Aurelia's condition, I found the following article about learning to live with that fact that the child you expected to be healthy might have some challenges:
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
- Emily Perl Kingsley
There is a lot of things that we are unaware of until it becomes a part of our lives. We felt this way when went through our miscarriages. And we definitely feel this way now that we're living "in Holland." But like the article says, Holland has windmills and it also has great beer. We've met some amazing people that we wouldn't have met otherwise (major props to all our doctors, nurses, case managers, etc.). We get to participate in a really neat clinical research study at Duke. And our little girl has the most amazing smile. We're learning to appreciate the small and large victories of this new journey.
A few things to pray for if we come to mind:
-Aurelia needs sleep! She won't sleep unless someone is holding her, which means we aren't sleeping much at night and only when we have pinch hitters come in to hold her (thanks Dad, Mary and Sarah for holding our baby today). Please pray that she'll be able to sleep and that we'll get some sleep too!
-She also needs to start packing on the o - z's (and hopefully adding up to some l-b's). When we left the hospital she weighed 6lbs. 8 oz. She's eating like a champ, we just need it to show.
-We're pretty worn out. We feel like we're living in a fog. We need an extra measure of strength, grace, patience, and whatever it is that makes people good parents.
And just 'cause we think she's too cute: