First, I want to share a essay I found on another blog of a mom with an omphalocele baby. It explains what its like having a special baby. I've never been able to explain what it's like to anyone who hasn't been through it... but now I can (even if I have to use someone else's words).
Welcome to Holland
by
Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... 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 Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After 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 guide books. 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...and you begin to notice that Holland has windmills...and Holland has tulips. 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 will never, ever, ever, ever go away...because the loss of that dream is a very 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.
I love my Holland. My Holland is more beautiful that I could have ever imagined! Sure, I've heard Italy is nice. But I would never trade this trip to Holland for a trip to Italy. Forget it! I'm sure I'll make it to Italy some day, but right now, Holland is exactly where I'm supposed to be! And I thank God every single day for landing me in Holland.
GAGE
Okay okay now what everyone wants to hear. How Gage is doing! He is doing so good and making amazing progress!
For Christmas he got his first tooth! And he already got his second one... both his bottom teeth. His teething phase is not so fun- he doesn't eat (which I hate cuz he can't afford to not eat good) and he doesn't sleep and it makes for a grumpy baby and a frazzled mom!
And for New Years he figured out how to crawl! And now he's crawling all over the place! Everyday we figure out one more way to baby proof the house as he gets into more and more things. He's not super fast yet but he is super determined! I think he just loves being able to follow me around and move to get things he wants and slip and slide all over our floors. The only carpet we have is in the bedrooms and the rest is linolium so when he has pants or socks on its super slippery! But he does cheat a lot... he straightens one of his legs or opens his knees nice and wide so that he can create a larger base and not have to use his core muscles as much to stabilize himself. It looks kinda cute and silly... but he's not supposed to do it! And he's trying to pull himself up to stand. He loves to stand up! You can tell he just thinks he's so big!
Here's video of when he was first figuring out how to crawl...
He is totally off his thickened milk! So now its just breastmilk (yes I'm STILL pumping) with a few teaspoons of formula to give him those extra calories. He eats about every 4 hours and then wakes up once in the middle of the night to eat. On a good feed he eats anywhere from 5-6oz or so, on a bad feed sometimes 3oz. He's all over the place. But for his 9 month appointment he actually made it back on the growth charts with his weight! A whopping 14lb 15oz... 2% baby! He still isn't doing well with actual food. He doesn't like to eat baby food or rice cereal or anything like that. We have to play games when we spoon feed him or let him just play in his food to get him used to having in near his mouth and on his face and everything. We try to do it a few times a day, but even so, by the end of the day, he has really only swallowed maybe 2 teaspoons tops. We have an appointment with speech therapy next week to see what else we can do to help him start to eat regular food.
Here's video of him playing in sweet potatoes (not eating them of course!)
Thats all I can think of for now (plus he just woke up from his nap!). I'll try to do better than an update every 3 months! Thanks for all your continued prayers and support! It helps more than I have words to describe!
