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 B 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.

Update: Since April 2000, our family has grown! In addition to my big brother, I also have two little brothers, two sisters-in-love, two nephews, and one niece!

Yesterday was a good visit with our neurosurgeon. He said that Carleigh's shunt is looking good. He also looked at her back and said it was good too! I had a few questions for him and got some great answers. Carleigh's back is healed so well that she is going to finally be able to have her first REAL bath!! She has only had sponge baths since birth because of her open SB and now, at four months old, she's going to get a REAL bath!! I was going to do it this morning, but need to wait till tonight when John is off work so we can do pictures, video, etc. This is a super special moment for us!! We had expected to give Carleigh sponge baths forever - even when she's not a baby anymore!!

Also, we don't have to cover her back with the gauze, sterile water, and Saran Wrap anymore!! We have done that for so long that we're afraid to change anything. I think I will continue to put a piece of gauze on it, just to provide extra padding. Dr. Park said to be really careful and not scratch her SB. Most of it is covered with thick skin, but part of it still has thin skin. If we scratch the skin, her spinal fluid is right under there and will start leaking again, putting her back into a major infection risk. Also, if fluid can leak from her back, it will cause major problems with her shunt.

Her shunt is looking so good that we don't have to go back to the neurosurgeon for three months. So we'll continue to pray that the little shunt keeps doing its job. :o)

I thought I had better make a post so you all wouldn't worry and think we're in the hospital AGAIN! :o)

Carleigh is doing just fine. She is now battling her first cold. I had the feeling she would end up with one, because her brother had one while she was in the hospital. She started having a really runny nose on Sunday night. I called the doctor on
Monday. Our doctor is out this week, so the doctor I talked to said not to put Carleigh on any medication. He said with her heart problems an antihistamine would probably not be good for her. So we're just riding this one out. My main concerns were RSV, which he said with her nose running like it is, it doesn't sound like RSV, and also, she is on oxygen and we are afraid her nose will plug up and she won't be able to get her oxygen.

Also, last night, another something major happened. John was changing her diaper and her SB lesion is sunken!! It looks so freaky! We don't know if it should be sunken like that, so I'm in process of finding out through my SB email group. The good thing about her lesion being sunken is that she was moving BOTH legs WILDLY!! I don't know if some stress was relieved or what, but it was so good to see our little girl moving both legs. Her left foot is clubbed pretty badly and we thought
she might never move her left leg well, if any at all. She's got that knee bending down really well though!! :o)

That's about all from "Carleigh Central". I'll try not to wait so long to post next time. But hey, I'm a busy Mom!! :o)

Carleigh is still doing well. She's been a bit cranky - but I would be too if I had just been through surgery!! As promised, here is the shunt story...

We first began going to St. Louis Children's Hospital when we found that Carleigh was beginning to get hydrocephalus and would need a shunt. We could tell that we were going to like St. Louis Children's from the minute we walked through the door. It didn't have the "hospital atmosphere" at all. We could tell that it would be full of people who loved kids.

Things progressed rapidly after our first visit. We saw the neurosurgeon and the cardiologist within a week of each other and surgery was scheduled to be performed on our precious baby on January 27, 2000.

This is where the story begins...

On Wednesday, January 26, we arrived at St. Louis Children's for an appointment with the anesthesiologist. He explained to us all the risks involved in putting
Carleigh under anesthesia. We thought he was a very nice man, even though the words he told us were scary. We were told to report to the sixth floor at 9:15 a.m.
After that meeting, we again met with Dr. Park. He explained the shunt to us, where it would go, and how it would work. We were finished for the day and went back
to the motel to soak everything in. That night I felt I needed to make pictures of Carleigh. I wanted to remember what she looked like before she got the shunt.

Thursday morning I woke up with the overwhelming urge to be sick. The day had come to put my daughter through the surgery that I didn't want her to have.
When I had first learned she had Spina Bifida, hydrocephalus and shunts were what scared me the most. Now one was staring me in the face - just a few hours away.

By the time we arrived at the hospital, Carleigh was crying. She had to stop drinking formula at 5:30 a.m. and Pedialyte at 8:00 a.m. The time was 9:15 and my girl was wanting to eat!

We were taken into a room and Carleigh was weighed. Seven pounds, thirteen ounces. Not much of a weight gain in a week's time, but Carleigh had been sluggish about
eating - no appetite. She was also measured for the first time since birth. Twenty inches! She's grown a whole inch and a half!

We spoke with another anesthesiologist. He told us that the anesthesiologist that would be with Carleigh was the best. He went over the risks again. The whole time
my stomach was turning. We asked if we could have anesthesia with Carleigh so that we wouldn't know what was going on. He thought that was funny. The neurosurgery
nurse practitioner came in to check and see if we had any questions and then we had to take off Carleigh's clothes and put a hospital shirt on her. At the last minute
the anesthesiologist came in and asked us how far we wanted her to go with Carleigh if something went wrong while Carleigh was under anesthesia. We told her to fight and not to give up on our little girl.

Before we knew it we were moved to a different room called "Surgery Holding". There were other parents in there getting ready to send their kids off to surgery - happy,
like it was no big deal. We were in tears. Carleigh was the smallest there. All the other kids were two and above. How could we let our little girl go without us? The anesthesiologist came over and promised us three things - she would watch Carleigh closely, she would take good care of her, and she wouldn't let Carleigh feel anything. We kissed Carleigh goodbye and before I handed her to the anesthesiologist, I whispered, "Be tough, keep fighting, I love you." Handing my daughter to someone I had just known for five minutes and trusting her with Carleigh's life was the hardest thing I have ever had to do in my life. The time was 10:30.

The surgery was expected to last 2 hours. John and I tried to ignore the time, but it was hard. We read magazines, talked, and hugged and smelled (yes, smelled!) Carleigh's pink blanket and clothes. We sat close to the door so we could see in advance who was coming. Our biggest fear would be to see Dr. Park early, because then we would know something was wrong.

At 11:30, Dr. Park came through the door. It had only been an hour and fear was in my heart. I asked him if Carleigh was finished. He said, "Yes, and she did great!" I cannot even begin to tell the amount of relief that poured through me. The overwhelming urge to be sick vanished and I asked when we could see her. He said it would be about 30 minutes.

We called Grams and Grandad and Mammaw and PawPaw, as well as Carleigh's godparents, Ruben and Debbie. They were full of questions and we answered as best we could, considering we hadn't seen Carleigh yet. The anesthesiologist came out and said that Carleigh would have bruises on her arms and legs. They had trouble finding a vein for the IV, but she assured us that Carleigh was asleep the whole time and didn't feel a thing.

Before we knew it, they were calling for "Carleigh's family" to meet her at the elevators. I expected to see the worst, but the only real thing that shocked me was how much of her hair they shaved! She still looked the same, only a little more sleepy, but she did have the energy to cry and let them know exactly what she thought of them! Our little fighter had made it through another trying time. I had expected her to be pale. She wasn't at all. Her Daddy and I were the only pale ones!!

Carleigh was put in the Pediatric Intensive Care Unit (PICU) for the night. She wasn't having any problems, but the doctor wanted to monitor her closely since she has a heart condition. The PICU was WONDERFUL! Carleigh's nurse was named Kellie. Before we could say a thing, she had removed everything latex from Carleigh's area and had put up a sign saying, "Latex precautions". She told us she didn't want anyone coming in and messing with "her" baby. Everyone in the PICU was fascinated with Carleigh. They said that the other PICU babies didn't cry - (most were on
breathing machines) - and it was different hearing a baby cry there. By 3:30 p.m., just four hours after surgery, Carleigh's IV was capped off because she was eating. Carleigh spent an uneventful night sleeping in the PICU and Mommy and Daddy caught a few zzz's in the parent lounge.

At 6:30 Friday morning, I went down to see Carleigh. She was sleeping like an angel. The night nurse, Jim, said that she had been fussy until about 2 or 3 a.m., until she finally went to sleep. That's my Carleigh! I told him that she does that most of the time at home. She's a little night owl!! *lol* John and I spent time with her until 8, and then we had to leave so the doctors could do rounds.

At 10:00 rounds were over and John went back in to see Carleigh. They were moving her!! We joked about "sitting on top of the world" because we were moved to the 12th floor, the highest in the hospital. In 12W-24A we were very comfortable. Our nurse there was Gerry. She was the charge nurse, so Carleigh was her only patient that day. We really liked her too. She gave Carleigh a bath and finally washed all the Betadine off her. We "hung out" all day until the doctors made rounds at about 4:30 and said that we could go home! While the doctor was getting Carleigh's discharge papers ready, the nurse took out her IV and we got her dressed. We went over to say goodbye to Carleigh's roommate, Noah, a very handsome five-month-old who had just gotten a "button" feeding tube. He already had a shunt like Carleigh's and Noah's big problem was that he has a brain tumor.

By 5:30 we were on our way home - in the snow!!!

We would like to say a big "THANK YOU" to everyone at St. Louis Children's Hospital. Not only did they treat our daughter like a first-class citizen, they also gave value to her life. We never heard, "Oh, she's got Trisomy 18, she's going to die," instead, we heard about how cute she was.

The people at St. Louis Children's will never truly understand how much their kindness meant to us. They do not know the entire "NICU Horror Story" - just some parts of it. We did learn that had Carleigh been transported to St. Louis Children's after she was born, she would have been treated with the same first-class treatment she received during her shunt surgery.

St. Louis Children's gave Carleigh something we've always wanted her to have - A fighting chance and a little respect. Carleigh not only got respect, but love from people who found it a privilege to take care of our little girl.

We're home!! Carleigh is doing great! She made it through the surgery just fine. She's such a little trooper! Since it's so late, I'll post the whole story
sometime tomorrow. I just wanted to put a quick update for all our faithful friends who continue to follow our Little Miracle's story. Thank you for all of your prayers!!

Well, this is it. Tomorrow one little Carleigh and two nervous parents will make their long trip to St. Louis Children's Hospital. Tomorrow will be filled
with a consultation with the anesthesiologist and another with the neurosurgeon. Hopefully we will have time for a little fun to break some of the nervousness. Then,
on Thursday, Carleigh will have the shunt surgery to free her little head of the swelling from hydrocephalus.

B will stay here at home with Grams and Grandad, Mammaw and PawPaw, and Aunt Kim each taking shifts. We are thankful that we live so close to all of our family and that they are willing to help us. He would be miserable if he had to stay at the hospital with us.

I think I'm ready for this. My friend, Lori, (another SB mom) called me a couple of nights ago and prepared me for what Carleigh might look like after surgery, how she will act, and basically just psyched me up for it. Her husband, Nathan, also took the time to talk to me. *Thanks, Lori and Nathan!!* This will be the last post until Friday or Saturday. Please say and extra prayer for Carleigh to have strength
and for her nervous parents to have courage.

We went to the neurosurgeon yesterday. He ended up referring us to a neurosurgeon in another city that has a Children's Hospital. They really don't know what to do with Carleigh because of her heart.

The second neurosurgeon (Dr. Park) wants to have a cardiologist at the Children's
Hospital look at her heart. The reason for all of this is to determine whether or not Carleigh needs a shunt. Since her Spina Bifida lesion has closed itself, there is no way for her fluid to drain. Her head circumference is increasing some and if we don't take care of the problem, it will continue to get larger. So, we need to know exactly what's happening with her heart so we'll know if she can have surgery or not.

We see the cardiologist next Tuesday, so hopefully we will know more then.

We're back from another visit with the pediatrician. We had a lot to talk about today!!

First of all, we were hoping Carleigh weighs 6 lbs. Well, she couldn't have gotten any closer - 5 lbs. 15 ozs.! We're so proud of her for her weight gain!

We told the pediatrician about Carleigh pulling out the feeding tube. She wasn't upset at all and asked how Carleigh had done without it. She opted to leave the tube out! :o) Not only that, but she said she thinks Carleigh is HUNGRY! (We had told her of our problems with crying 1 hour before feeding time.)

We are supposed to raise milk intake from 32 ccs. to 51 ccs. every 3 hours! If Carleigh can't handle it, we're allowed to cut it in half and feed her more often than 3 hours. I don't forsee any problems, as we've affectionately dubbed her "Piggy
Girl". LOL

Another concern with her is the still open Spina Bifida. The pediatrician told us that she can't give us a referral to get it repaired. She explained that she will not do the referral because she is not going to do something that she believes will
allow Carleigh to die. The surgery is a major surgery as a surgeon has to go in and repair and try to reconnect the nerve endings. With Carleigh's heart problems, the pediatrician feels she would not make it through surgery.

John and I were not willing to leave her back open, until today. We have accepted this well. When you get the choice of having your daughter alive, or risking her life for a surgery, well, we want her with us, hands down, no arguments. She has lived 6 1/2 weeks with open Spina Bifida and has flourished.

My main concern had gone from the back surgery anyway, and is focused more on the fear of hydrocephalus. Carleigh's back has "grown" a protective covering on it. What was once a walnut-sized opening is now a small slit that is about 1/4 inch long. Without that opened all the way up, it has made it possible for her head to collect fluid. We addressed that issue with the doctor too. She said that Carleigh is a possible candidate for a shunt, and she would give a referral for that. She said that Carleigh's bones in her head will compensate to make room for the fluid, but she doesn't want her head getting large and heavy because it would then be hard to care for her. We are going to see a neurosurgeon to determine if a shunt is needed. Carleigh's head has had the same measurement, so for now it's not growing. A shunt would be a future consideration - that is - if her heart can handle the anesthesia. The surgery for the shunt is not as major as closing the back, but she would have to be put under anesthesia for the surgery. That's about all for now. We are proud of our little fighter!

I called the doctor today.

I've been concerned about Carleigh's head shape. It's not getting "fatter" but it's getting "taller". I was worried about hydrocephalus, but since her circumference is still in the normal range and she isn't vomiting or acting differently the pediatrician said it was ok.

Paranoid Mom I am, but I don't want anything to happen to my little angel!