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!

Yes, another post! Tonight between 6:30 and 7:00 p.m. Carleigh had her first REAL bath!! She found it enjoyable at first, but then started SCREAMING at the top of her lungs!! I think she got a little chilled. She's used to being covered up with the towel while I bathe her.

I've made a decision about her SB lesion. I tried today to keep the dressing off it. I did put a piece of gauze into her diaper for some extra padding. When I got ready to give her a bath, I noticed her SB site was red. It wasn't damaged or anything, but the color of it reminded me of one of the painful "strawberry" burns you get on your knees if you fall on a gym floor. I don't want the SB to get irritated, so we are going to continue to do the gauze, sterile water, Saran Wrap thing -- even though Carleigh did not appear to be hurting at all. We've worked hard taking care of that SB and we don't ever want to go back to the way it was!

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)

As it turns out, Carleigh's SB lesion being sunken is just fine. The neurosurgery nurse (Delia) that's in my SB group said that it's just a sign that the shunt is working well and that if we have Carleigh sitting up for long, it will start bulging again. The morning after it had been sunken, it was back to it's bulging self. It's just a small bulge, nothing in comparison to what it was before the shunt.

Carleigh has been a real night owl lately. I think so many visits to the hospital have her confused on nights and days. She's being an angel right now, laying here on my lap sleeping. I should be taking advantage and sleeping myself, but with two kids and busy days, this is my "me" time. :o)

Carleigh has been eating up a storm! I am hoping that on the next weight check on March 2nd she is well over 8 lbs. and maybe even at 9! Her cousin is due next month and we hope Carleigh weighs more at 4½ months old than Meagan weighs at birth! lol

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)

Exciting news from "Carleigh Central".... Yesterday, our PAT teacher was here working with her big brother. I was sitting on the couch with Carleigh laying beside me, not really paying any attention to her. (I THOUGHT she was sleeping!) Amy looked over at her and said, "Wow! She's really moving a lot! She will be rolling over before long." I looked over at Carleigh and she was moving her arms wildly, as usual. But then I noticed her blanket was moving! I pulled it off her legs, only to see her bending and straightening her knees!!

I was so excited! Usually when Carleigh moves her legs, it is basically from her waist with both legs extended outward, close together. Yesterday, though, with the bending knees, she did more of a kicking motion. All of this from a baby who is SUPPOSED to be paralyzed from the waist down. (That's what they told us in the
NICU.)

So, now we are trying to push the issue to get Physical Therapy available to us now, instead of having to wait until Carleigh is six months old. I believe that Carleigh
will learn to walk - you just wait and see!! :o)

We just had our first visit with the geneticist, Dr. Miles. We knew that T18 was not something that we passed to Carleigh, but it was nice to hear an actual geneticist tell us that! She said that T18 happens randomly and there is absolutely nothing we could have done to keep her from getting it. We were worried about our son being a
carrier or that our brothers and sisters could be affected. We are thankful they won't be!!

Now we understand a little more about how the Trisomy happened, as far as the way the cells divided. Dr. Miles was very positive toward us and what we're trying to accomplish with our little miracle - something we appreciate VERY much! She told us Carleigh is an individual and no matter what the statistics say, she is still our baby. We get to make the choices that we want for her and also, it is going to be up to her on how long she is with us.

Dr. Miles said that Carleigh making it through the pregnancy, labor, and delivery shows that she is stronger than many other T18 babies. Most don't even make it through the first few months of the pregnancy!!

Also, we are not classified into the 1 in 1000 chance for Spina Bifida, as Carleigh's is caused by the T18. Spina Bifida can sometimes be prevented by taking Folic Acid. When I found out she had SB, I felt maybe it was my fault because I didn't get enough Folic Acid. It's nice knowing that no matter what I did or didn't do, it did not cause Carleigh's problems.

Now we can just concentrate on helping her grow and letting her know she is VERY loved!!!

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!

What a day! Last night Carleigh began IV infusion antibiotics. (Rocephin)

Yesterday morning she surprised me with "diaper yuckies" that had run up into her Spina Bifida lesion. Our problem was that no one in our area would provide IV therapy to a baby.

Our case worker through our insurance arranged for us to live at the Ronald McDonald House for 5 days so Carleigh could receive her medicine. After some fast and furious packing, we arrived at the House. We played "phone tag" most of the day and eventually talked to the nurse who was going to administer the medication. As it turned out, WE are the ones that are administering her medication!! It's such a simple job that she taught us how and we got to come back home. I told John we were turning into qualified nurses! :o)

Carleigh also has had "eye gunkies". She had the problem since birth. In fact, we thought she was unable to open her right eye and it turned out that it was just sealed shut with the "gunkies!" She is now on eye drops (Tobramycin) to clear that up.

Mommy will sure be glad when the "diaper yuckies" and "eye gunkies" are gone!!

Things have really changed today - for the better! I received a phone call and an email concerning Carleigh. I won't say exactly who from, but I will say that there are some very special guardian angels watching out for my little miracle. Our "angels" are in the medical profession and have been following Carleigh's story for MANY months. They told me today that Carleigh's back needs to be fixed. Finally we have someone who has given us a new option!!

We are in process of figuring out where to take her. We will have to meet with many doctors to determine whether she is strong enough to withstand surgery. We also want to talk to a geneticist. Our doctors told us she has full Trisomy, but that was based upon three cells. I learned that 20-100 random cells must be tested to determine if a person has Mosaic Trisomy, which would be much better than full.

We see the pediatrician tomorrow. Hopefully we can fix our little girl's back soon, and the big risk of infection will be gone! :o)

We had our first well-baby visit to the doctor today.

Carleigh weighs 4 lbs. 14.8 ozs, up from her 4 lbs. 13 ozs. at discharge from the hospital. Her doctor was happy to see she has gained weight, rather than losing it.

The SB lesion is doing ok, no signs of infection. We discussed starting proflactic antibiotics, but her doctor was concerned that Carleigh would become immune to antibiotics if we did that.

We are supposed to raise Carleigh's milk intake to 20 ccs every 3 hours. I told the doctor that she gets a real "attitude" when it's getting close to time to eat. She sucks the feeding tube and cries!

We discussed having a heart check and also seeing a geneticist. Our next appointment is next Tuesday.

Wow, so much has happened since I last wrote!

First of all, we found out about a fairly new fetal surgery. The purpose of it is to give babies with sb a chance to have fewer problems.

The surgery is performed in Nashville, TN, so on Tuesday, (June 22) I called Nashville to see what was up.

The first thing they asked was if I had had an amnio! YIKES! I had been trying to avoid one of those!

Anyway, after I got off the phone with Nashville, I started calling my long line of doctors to try to set up the amnio. After all, I want to do what's best for my baby!

After much "phone-tag" throughout the week, my amnio was scheduled for 8 a.m. on Friday, June 25.

I had a whole 16 hours to psych myself up for it! Let me tell you, I was a wreck! I figured it would hurt REALLY bad, that I would start contractions, bleeding, or amniotic fluid leakage. (That is possible, you know!)

They calmed me down really well, at first. They let me see my sweet baby girl. I was so happy to see her again, because each time I see her, it reassures me that she is ok.

We saw some great things that day. Or at least they were great to me.

They measured the ventricles in her brain to check for hydrocephalus. Hydrocephalus is where fluid stores in her head and squishes her brain. Normal is 10 or less. We were VERY happy to see 8!! NO hydrocephalus!! :o)

I had never felt her kick yet. She must not like ultrasounds because she kicked the machine so well that even I felt it! Wow! The first kick!! (Since then she has been moving like a little "wild woman" too!)

And lastly, she always looked like she was sitting on her bottom with her legs out straight. I was afraid the spina bifida had already affected her legs and that she couldn't move them. During the ultrasound, we saw her curl them up and touch her bent knees to her belly. I think she did that especially for me. She wants me to know she will be fine.

After they got me really calm and happy, they dropped the bomb... it was time for the amnio! My heart started pounding!!

They used the ultrasound to monitor the whole time. I didn't want my Little Punkin to get stuck. I wouldn't look at the needle, but I knew it was big. John was watching the ultrasound like a hawk, making sure our Little Punkin was ok.

The actual amnio took about 5 minutes. It wasn't as bad as I had originally expected. I won't say it was painless, although, knowing you have a needle in your stomach contributes to pain!

Little Punkin behaved herself the entire time! We were so proud of her.

I went home after it was finished. I was directed to watch for those contractions, bleeding, or leaking. I also couldn't lift B for 24 hours.

All the bad things I expected to happen didn't. Little Punkin and I are just fine. She is still kicking and I'm still carrying her. In fact, we are all fine. I can lift B now and John is just happy that part of our lives is over and that the baby and I are ok.

We will get the results in about 2 weeks. Then it's on to other things.

This baby is taking us on an amazing journey. Sometimes it's scary, sometimes it's not, but we are with her for the duration.

We can't wait till the day that our Little Punkin is here to play with her big brother. It will be so much fun!

Today we met with the perinatologist. He didn't have good news for us at all. He told us our baby has spina bifida and club feet. There are six vertebrae that are affected in our baby's back.

I don't think John and I have ever cried as hard as we did today.

We really don't know what to expect with this disease. He told us that the club feet can be corrected, but what about the spina bifida?

We have calmed down about it considerably, but we really want some answers. We asked tons of questions - most of which the doctor couldn't answer.

We were very happy (and surprised) that he didn't mention termination. We told the nurse on Thursday that WAS NOT an option. We are going to accept whatever happens.

Now we are being referred to a neonatologist. I thought that these were people that I would never have to see. I was supposed to have healthy babies. B was a healthy baby.

We are still holding on to the faith that God will protect this baby. Maybe some miracle will happen and the baby's problem will be corrected before delivery.

In our moment of sadness, one star came shining through. The ultrasound technician was looking at the baby and said, "She's standing on her head right now."

Wow! The little girl we have been wanting. Now our family will be complete!

Little Punkin, we love you! Your big brother loves you too!