MIC'S STORY (The Picture Journal)

Have you ever tried to par down literally hundreds and hundreds of pictures into a blog-sized journal entry? Well its not easy! And this is still going to be a pretty long entry. So with no further ado, here's the story, as told by Mic herself...

The drama surrounding my life really began and lived some of its most intense moments before I was born. In the last month and a half before I came into this world worrisome findings began to crop up. For starters I was just way to small for a third trimester baby and even worse my head was even smaller, out of proportion with my body. This lead to twice weekly heart rate monitering and lengthy ultrsound tests. In one of these tests my very severe bilateral cleft lip showed up. This meant there were two large openings in my upper lip where it did not join together and form properly. By then our doctor was nervous. He had a very serious talk with mommy and papi. He told them that these symptoms most probably pointed to some much more severe underlying problem in my cromosomes and that I might not survive birth, or I may just live a few hours or days. There was just no way to know, but in the meantime he wanted us to all go to a bigger hospital that had more experience with these kinds of problems.

That day Mommy and Papi gave me my name with all the weight of its meaning in their hearts. "The Lord's" And with that they cried and prayed over me and put me in God's hands, come what may.

Wednesday morning they took the trip up to Legacy Emanuel and had another series of serious talks with more new doctors. It was decided that I needed to be born as soon as possible and they scheduled to induce labor on Thursday at 11am. But I though it would be more fun to keep everyone up! Wed. night Mommy's labor pains started and they got to drive all the way to the new hospital again--in the middle of the night! We all got lost on the way, but finally found a policeman who helped us find the hospital. Every time a pain came, my little heart stopped almost completly. Mommy got the first emergency ceserian of the morning and by 9am I was born at 38.5 weeks gestation. I weighed 1.9kg (4lb 6oz) and measured 45cm (17 1/4 inches) long. I indeed not only had the bilateral cleft lip, but my palate was wide open as well.

Over the next 22 days in NICU the findings apart from my cleft lip and palate included microcephaly (small head), a VSD (two small holes in my heart) and two small areas of infart in my brain. At 14 days my G-tube was placed as I was not managing to eat much and complete nutritian was urgent for my developing brain. ...and midst all this my cromosome count came back 100% clean!!! Jesus healed me.

Mommy and Papi learned to use a special bottle to try and help me eat by mouth as much as possible.

22 days old and all dressed up, ready to come home.
In the first several months my muscles were a little to tight, I had a hard time relaxing my hands.
Five months old and sporting my "new" lip

At eleven months old I got my palate fixed and ear tubes popped in. Because of my continued developmental delays they did some more gene studies too, but found nothing! I was feeling pretty miserable, but wagon rides definatly helped--another reason we love Legacy Emanuel!
By the time I was a year old, I'd had three surgeries in my mouth and was 100% G-tube dependant. Cheese puffs were some of my first successful feeding therapy tools.

OK, tell me again how cute I am!
One year, five months old, a long ways from walking alone but starting to learn to use my "walker"--a GREAT start!
But I am still a peanut and weight gain doesn't come easily for me, just look at how I compare to daddy's shoe at one year, seven months.
Monkey see, monkey do...I liked to tube feed my babies too!
On my second birthday I started taking my first shaky independant steps! This was about six months later, by then I was a pro--Hooray!!!

Concentrating hard and trying not to lose my balance...
A new favorite game, "reading" books to my teddy bear.
I had some horseback therapy to help me gain trunk control and confidence, I loved the horse, but was really nervous up so high. However, I was a brave girl, never once did I cry.
More great changes in my life...a new brother!

I am getting bigger and braver
Mommy and Daddy love me SOOO much
And they tell me that soon I won't be eating like this any more.
I think that sounds intresting. I'll be meeting my therapist Lorioux soon. Between her, Mommy, Papi, Grandma and God, I think they are right, mouth food is definatly on the horizon for me, and some day, tubey food will be but a memory!