4/08/2012

welcome to carleigh's corner!

Hello, World!! My name is Carleigh Lauryn Grace!

I was born on November 8, 1999, at 2:28 p.m. I weighed in at 5 lbs. 3 ozs. and I was 18 1/2 inches tall. My APGAR scores were 2, 6, and 6. Not bad for a little girl who has Spina Bifida and Trisomy 18!

My Mommy and Daddy were so happy to meet me! They have been praying for me and waiting for me for such a long time!!

My story began on February 27, 1999, when Mommy found out that she was expecting me. Mommy and Daddy were so excited to find out that I was growing in her tummy!

On June 10, during a routine ultrasound, doctors told my parents I would have Spina Bifida. Mommy and Daddy researched and found
a new, innovative Fetal Surgery that is performed at Vanderbilt University, in Nashville, Tennessee.

In order for Mommy and me to undergo surgery, Mommy had to have an amniocentesis. The doctor put a long needle into Mommy's tummy and got some of the fluid that surrounded me. The results of that test showed Trisomy 18, a rare chromosome abnormality, in which I have 3 copies of the 18th chromosome, rather than the usual two.

This diagnosis prevented Mommy and me from undergoing the Fetal Surgery, as the doctors at Vandy can't do the surgery if there is a chromosomal problem.

Doctors told my parents that with Trisomy 18 I would most likely be stillborn. If, by chance, I were born alive, I would only have a 10% chance to see my first birthday. They encouraged Mommy and Daddy to terminate, but Mommy and Daddy said, "NO!"

Well, I am a very special little girl as you already know... I am ALIVE!! I was born with many special needs.

My first special need is Trisomy 18. Even though the doctors told my Mommy and Daddy that Trisomy 18 is lethal I have managed to survive. Mommy and Daddy are so happy I wasn't stillborn!

My second special need is Spina Bifida. When I was in Mommy's tummy, my neural tube failed to close all the way. The end result is that I have an opening in my back about the size of a walnut. My lesion is VERY prone to infection. The doctors didn't close my lesion, due to the Trisomy, but that's a long story I won't even get in to!

I have a few other things that are concerns, one being congenital heart problems, that cause a loud murmur.

Other concerns center around my Spina Bifida. They are called hydrocephalus, bilateral clubfeet, and Arnold Chiari Malformation.

Even with all these needs, I look like a normal little girl. I have lots of dark brown hair. I also have beautiful blue eyes, just like Mommy and my big brother!

I act like a normal little girl too. I really don't cry too much, just enough to let Mommy and Daddy know I am in charge! I have already captured the hearts of everyone who has met me.

I spent the first two days of my life in the Neonatal Intensive Care Unit. I spent the third day of my life in a Care By Parenting Room, where Mommy and Daddy could care for me, but have the NICU nurses there for help, if needed. I finally came home at four days old, complete with oxygen, an IV, and an APNEA monitor!

On December 6, 1999, at almost 1 month of age, I got to have my IV PICC line removed! I was doing so well with my tube feedings the pediatrician said I didn't need the PICC line anymore!

Then on December 22, 1999, I decided I was a big girl and didn't need my feeding tube anymore. I pulled that tube right out all by myself!! Since then I've been gaining weight by leaps and bounds, usually one ounce each day!!

I have had two surgeries since I was born. The first was on January 27, 2000, when I was only 12 1/2 weeks old. I got a shunt to drain the fluid from around my brain. Then, when I was 14 weeks old, my shunt failed. On February 11, 2000, I had my second surgery for a shunt revision. That's a lot of major stuff for such a little girl! Now I am home, though, and doing just fine!!

The doctors don't know how much time I will spend on Earth. All I know is that Mommy and Daddy love me very much and are treasuring each and every minute that they have with me! They know that I am a miracle from God!

On Saturday morning, April 8, 2000, I gained my Angel wings and flew off to be with Jesus. Mommy, Daddy, and Blake are very sad. Please continue to keep them in your prayers. Please continue to visit my site, as I plan to help Mommy to continue to educate the world about all the beautiful little boys and girls who have Trisomy 18.

Right now I'm new at my "angelness". I'm getting used to my new wings. I'll tell you one thing, though, there's a great view from up here!

Angel hugs and kisses,
Carleigh Lauryn Grace
(forever 5 months old)

P.S. - If you'd like to read my story from the very beginning, please start here, and then follow the blog archive links from bottom to top.