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!
The Life of An Angel: Carleigh Lauryn Grace
4/08/2012
6/28/2000
carleigh's memorial garden
This is the garden we planted in memory of our precious angel, Carleigh Lauryn Grace. It was begun during summer 2000. The photos were taken throughout the year 2003, unless otherwise specified.
These are her three azaleas. We received them at her funeral in April, 2000. Last year, only the middle one bloomed. This year the first one was first to bloom. The middle and last ones are finally starting to catch up! The angel in the first picture is the one Mom & Dad gave us for her angel-versary this year. The angel in the bottom picture is the one from my co-workers given on her first angel-versary.
Here's another view of the angel sitting beside her marker. My dad made the marker to put at the cemetary until her memorial stone was made. There's also a pinwheel on the other side. *Ü* Above her marker are two lilies that aren't blooming yet.
This picture best shows her pink creeping phlox in the front and her six pink tulips in the back.
This is another angel statue given by my Mom and Dad. The little "Welcome to My Garden" stone next to it was given by my co-workers. Ignore the weeds... they will be replaced with pink Vinca when the weather is warmer!
This is her purple rhododendron that's starting to bloom. The picture is kind of blurry. *sorry*
This picture is a *yucky* picture of Carleigh's Lamb's Ear - what it looks like after winter. The new growth is to the far right - sitting up on the stone.
Summer Pics!
Carleigh's Lilies and Hosta. The Phlox is in front - bloomed in Spring.
Cool Wave Petunias and I don't remember what the plant in front is. LOL
Autumn Pics!
Remember the "yucky stuff" in the 3rd row of pictures? Carleigh's Lamb's Ear is still growing like crazy! You can also see her humongous mum, as well as pink petunias in front.
A close up of Carleigh's mum that's growing around her angel statue. In the Spring/Summer, you can't even tell a mum is back there because it always looks dead!
A different view of part of Carleigh's Garden. The lilies and hosta in front are pretty much out of season now.
Carleigh's Azaleas are ALWAYS pretty - Though I prefer the beautiful blooms up in the "Spring" shots.
Finally, Carleigh's Garden in winter, taken December, 2006. Carleigh's azaleas are covered with pink lights. There is a white angel to the right, that sits in the square where summer flowers once were. To the far left (not her garden), the shrubs are covered with green, yellow, blue, and red lights. The icicle lights on the house are red and white, giving a candy cane appearance. On the front door is a wreath, lit in green.
Carleigh's tree in autumn, taken October, 2006.
Carleigh's tree in April, 2007. It was tiny when we received it for her funeral in April, 2000, but just look at it now!
These are her three azaleas. We received them at her funeral in April, 2000. Last year, only the middle one bloomed. This year the first one was first to bloom. The middle and last ones are finally starting to catch up! The angel in the first picture is the one Mom & Dad gave us for her angel-versary this year. The angel in the bottom picture is the one from my co-workers given on her first angel-versary.
Here's another view of the angel sitting beside her marker. My dad made the marker to put at the cemetary until her memorial stone was made. There's also a pinwheel on the other side. *Ü* Above her marker are two lilies that aren't blooming yet.
This picture best shows her pink creeping phlox in the front and her six pink tulips in the back.
This is another angel statue given by my Mom and Dad. The little "Welcome to My Garden" stone next to it was given by my co-workers. Ignore the weeds... they will be replaced with pink Vinca when the weather is warmer!
This is her purple rhododendron that's starting to bloom. The picture is kind of blurry. *sorry*
This picture is a *yucky* picture of Carleigh's Lamb's Ear - what it looks like after winter. The new growth is to the far right - sitting up on the stone.
Summer Pics!
Carleigh's Lilies and Hosta. The Phlox is in front - bloomed in Spring.
Cool Wave Petunias and I don't remember what the plant in front is. LOL
Autumn Pics!
Remember the "yucky stuff" in the 3rd row of pictures? Carleigh's Lamb's Ear is still growing like crazy! You can also see her humongous mum, as well as pink petunias in front.
A close up of Carleigh's mum that's growing around her angel statue. In the Spring/Summer, you can't even tell a mum is back there because it always looks dead!
A different view of part of Carleigh's Garden. The lilies and hosta in front are pretty much out of season now.
Carleigh's Azaleas are ALWAYS pretty - Though I prefer the beautiful blooms up in the "Spring" shots.
Finally, Carleigh's Garden in winter, taken December, 2006. Carleigh's azaleas are covered with pink lights. There is a white angel to the right, that sits in the square where summer flowers once were. To the far left (not her garden), the shrubs are covered with green, yellow, blue, and red lights. The icicle lights on the house are red and white, giving a candy cane appearance. On the front door is a wreath, lit in green.
Carleigh's tree in autumn, taken October, 2006.
Carleigh's tree in April, 2007. It was tiny when we received it for her funeral in April, 2000, but just look at it now!
4/11/2000
pictures
Many people have asked me to put a picture of Carleigh on her website. I spent Carleigh's entire life protecting her, and I will continue to do so forever. Thank you for reading about Carleigh's life and her Memorial Service. Even though Carleigh's journey on Earth has ended, she will continue to live on forever in our hearts!
"Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning." ~ James 1:17
Since Carleigh's passing, another child has been added to our family. Carleigh's baby brother, Jackson, arrived in February, 2001, happy, healthy, and very much loved!
meditation and benediction
I suspect, Andrea, that Carleigh's already talking to God about maybe sending you another little girl one of these days.
There's not really a lot that can be added to what's already been expressed here today, but I do have some comments I'd like to make.
A park ranger said to a visitor at the Grand Canyon, "It's eight miles down and it's eighty miles back. However," he continued, "the Grand Canyon is beautiful on a sunny day when you can see both the shades and the shadows."
And although not completely unexpected, John and Andrea, you were really never ready for this. The faith and hope was always there that God would bring still another miracle. And that's proper and that's right.
In the journey of life we're all going to visit the Grand Canyon of sorrow and bereavement. And our dear friends, Andrea and John have plunged suddenly to the canyon's depth with the death of their precious Carleigh. She's gone, but she's with Jesus, and although not completely unexpected, you were not ready.
We do not understand what has happened here - or at least I don't. We cannot be logical and I'm not going to try to be. Therefore we have here today a mystery and, of course, our faith is stretched a lot further than ever before. We've come to this place where you and even I can let tears overflow. It's good for you to shed tears at a time like this. There could even be other emotions of resentment, bitterness, and even hostility may build up. They need a vent for the expression as well.
You're going to have some doubts. I admire your faith at a time like this. I admire what you did from the very beginning. You did the right thing. But you're going to become depressed and sometimes despondent because that's a part of grief. It's a very real part of it.
None of us can understand that feelings that you have. I can have compassion for you, I can sympathize with you, but I can't really show empathy for you because I haven't been there. You're tougher than I am and I admire that. And your faith has strengthened my faith. Thank you.
We are here to share, though, your loss and convey to you our sympathy and to help in every possible way, although we feel so helpless.
Only eight miles to the bottom of Grand Canyon. So rapid did the sorrow come. Only a few short years ago John and Andrea stood here at this altar as we went through their wedding vows together. Little did we know that so soon we would be standing here on this occasion.
It's a long hard way out of the valley, but there's a way out. "Yeah though I walk through the valley of the shadow of death I will fear no evil for Thou art with me'" said the Psalmist.
Listen, dear friends, I'd like to just offer you some helpful steps out of what may be your valley of depression. They've worked for a lot of people over the years.
Accept the fact that your baby is dead and that she is with God and that fact is good. It can't get any better than that. But she's gone from this mortal world except for her spirit and her spirit will be with you the rest of your life and that's good. That's good. So hold on to her spirit but remember your life is here and now.
Remember all healing takes time. It's not gonna happen now, it's not gonna happen tomorrow. You cannot absorb this loss in just a few days. It'll take days, it'll take months and years. And then after several years go by your soul will begin to heal and your life will have meaning and those precious little moments that you had, which were giants really, you'll remember.
And I'd like to advise you, and I believe you're going to do this Andrea and John, you shared that with us, at least, talk freely about your child - the joy that came to your life. Didn't they do that today?
Talking gives sorrow those wings. It flies away so you can see the sky and the stars and remember the goodness of the Lord. It's good to talk, but further along I advise you to get up, get out, get going - do not withdraw. Life goes on.
I'm gonna tell you something and you know it - you got B. Wow. Isn't that wonderful? And you've got Mommy and Daddy and grandpas, grandmas, friends.
Get up, get out, get going. I say to you, busy yourself in a purpose in life. You've had the experience, Carleigh brought that for you. There was purpose there. Not just for your relationship with her, but so that you might be able to help others who have gone through similar experiences and you have that to share. And we live in that great electronic world where you can share these things with millions of people and that's God's blessing.
Finally I would say take your burdens to the Lord and leave them there. Deepen your faith. Think of all the problems that Carleigh escaped in this world and project the joy that must be hers in the house of God that He has prepared for all His children such is the Kingdom of God.
One of the worst moments in World War II came when the Nazis occupied Warsaw and proceeded to slaughter the Jewish population. There was a young Jewish girl who managed to escape and hide in a cave outside the city. She died there alone, but before her death she had scratched on the wall of the cave these words:
"I believe in the sun, even when it is not shining. I believe in love, even when feeling it not. I believe in God, even when He is silent."
Have faith, have faith, have faith, keep the faith. Jesus has said to us, "Do not let your hearts be troubled, have faith in God and faith in me."
God is good, my friends. All I can say is we've got to trust Him.
In closing, just for John and Andrea and the family this illustration:
Premature twins were born to a certain woman. One of the babies died shortly after birth. The supporting family was at the parents' side as they wept. And before the baby was taken from the room, the family passed it around to be held and loved by each family member. The last to get to hold of her was the mother, who through her tears and crying whispered, "I would do this all over again for you, my dear, just for this moment with you."
And so may the sustaining power of faith, hope, and love be yours this day and all of the days of your life through Jesus Christ our Lord, we pray. Amen.
There's not really a lot that can be added to what's already been expressed here today, but I do have some comments I'd like to make.
A park ranger said to a visitor at the Grand Canyon, "It's eight miles down and it's eighty miles back. However," he continued, "the Grand Canyon is beautiful on a sunny day when you can see both the shades and the shadows."
And although not completely unexpected, John and Andrea, you were really never ready for this. The faith and hope was always there that God would bring still another miracle. And that's proper and that's right.
In the journey of life we're all going to visit the Grand Canyon of sorrow and bereavement. And our dear friends, Andrea and John have plunged suddenly to the canyon's depth with the death of their precious Carleigh. She's gone, but she's with Jesus, and although not completely unexpected, you were not ready.
We do not understand what has happened here - or at least I don't. We cannot be logical and I'm not going to try to be. Therefore we have here today a mystery and, of course, our faith is stretched a lot further than ever before. We've come to this place where you and even I can let tears overflow. It's good for you to shed tears at a time like this. There could even be other emotions of resentment, bitterness, and even hostility may build up. They need a vent for the expression as well.
You're going to have some doubts. I admire your faith at a time like this. I admire what you did from the very beginning. You did the right thing. But you're going to become depressed and sometimes despondent because that's a part of grief. It's a very real part of it.
None of us can understand that feelings that you have. I can have compassion for you, I can sympathize with you, but I can't really show empathy for you because I haven't been there. You're tougher than I am and I admire that. And your faith has strengthened my faith. Thank you.
We are here to share, though, your loss and convey to you our sympathy and to help in every possible way, although we feel so helpless.
Only eight miles to the bottom of Grand Canyon. So rapid did the sorrow come. Only a few short years ago John and Andrea stood here at this altar as we went through their wedding vows together. Little did we know that so soon we would be standing here on this occasion.
It's a long hard way out of the valley, but there's a way out. "Yeah though I walk through the valley of the shadow of death I will fear no evil for Thou art with me'" said the Psalmist.
Listen, dear friends, I'd like to just offer you some helpful steps out of what may be your valley of depression. They've worked for a lot of people over the years.
Accept the fact that your baby is dead and that she is with God and that fact is good. It can't get any better than that. But she's gone from this mortal world except for her spirit and her spirit will be with you the rest of your life and that's good. That's good. So hold on to her spirit but remember your life is here and now.
Remember all healing takes time. It's not gonna happen now, it's not gonna happen tomorrow. You cannot absorb this loss in just a few days. It'll take days, it'll take months and years. And then after several years go by your soul will begin to heal and your life will have meaning and those precious little moments that you had, which were giants really, you'll remember.
And I'd like to advise you, and I believe you're going to do this Andrea and John, you shared that with us, at least, talk freely about your child - the joy that came to your life. Didn't they do that today?
Talking gives sorrow those wings. It flies away so you can see the sky and the stars and remember the goodness of the Lord. It's good to talk, but further along I advise you to get up, get out, get going - do not withdraw. Life goes on.
I'm gonna tell you something and you know it - you got B. Wow. Isn't that wonderful? And you've got Mommy and Daddy and grandpas, grandmas, friends.
Get up, get out, get going. I say to you, busy yourself in a purpose in life. You've had the experience, Carleigh brought that for you. There was purpose there. Not just for your relationship with her, but so that you might be able to help others who have gone through similar experiences and you have that to share. And we live in that great electronic world where you can share these things with millions of people and that's God's blessing.
Finally I would say take your burdens to the Lord and leave them there. Deepen your faith. Think of all the problems that Carleigh escaped in this world and project the joy that must be hers in the house of God that He has prepared for all His children such is the Kingdom of God.
One of the worst moments in World War II came when the Nazis occupied Warsaw and proceeded to slaughter the Jewish population. There was a young Jewish girl who managed to escape and hide in a cave outside the city. She died there alone, but before her death she had scratched on the wall of the cave these words:
"I believe in the sun, even when it is not shining. I believe in love, even when feeling it not. I believe in God, even when He is silent."
Have faith, have faith, have faith, keep the faith. Jesus has said to us, "Do not let your hearts be troubled, have faith in God and faith in me."
God is good, my friends. All I can say is we've got to trust Him.
In closing, just for John and Andrea and the family this illustration:
Premature twins were born to a certain woman. One of the babies died shortly after birth. The supporting family was at the parents' side as they wept. And before the baby was taken from the room, the family passed it around to be held and loved by each family member. The last to get to hold of her was the mother, who through her tears and crying whispered, "I would do this all over again for you, my dear, just for this moment with you."
And so may the sustaining power of faith, hope, and love be yours this day and all of the days of your life through Jesus Christ our Lord, we pray. Amen.
fly
Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven’s love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again
Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem’ry bittersweet
Until we meet
Fly, fly do not fear
Don’t waste a breath,
don’t shed a tear
Your heart is pure, your soul is free
Be on your way, don’t wait for me
Above the universe you’ll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won’t forget
Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven’s love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again
Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem’ry bittersweet
Until we meet
Fly, fly do not fear
Don’t waste a breath,
don’t shed a tear
Your heart is pure, your soul is free
Be on your way, don’t wait for me
Above the universe you’ll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won’t forget
Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light
mommy's message to carleigh
My Dear, Sweet Carleigh Lauryn Grace,
Once upon a time a mommy had a dream in her heart. Her dream was to have a beautiful little girl that she could hold, care for, and most of all, love. That Mommy was me and on November 8, 1999, I gave birth to an angel. You.
Your Daddy and I knew from the very beginning that you would be a little girl. I was so sure of it, that I bought your fuzzy pink blanket before we had even had our ultrasound. I can't even begin to describe how ecstatic we were when the doctor told us you were, indeed, a girl!
We were heartbroken when the doctors told us you would be less than perfect. You would have Trisomy 18 - something that was "incompatible with life" and would cause numerous problems.
Well, they were wrong. You WERE perfect. I will always remember your beautiful blue eyes and long eyelashes. Those were the things I noticed most about you. You showed the world that it was possible for a little girl with Trisomy 18 to live and enjoy life to the fullest.
Carleigh, you have taught me so many things. You have taught me the importance of being thankful for every single day and have shown me what it's like to feel unconditional love. You were the best daughter a mommy could ever ask for.
I miss you so much already, and because of you, my life will never be the same. I miss your smile, the adorable way you would pucker your lips like you wanted a kiss, and your sweet baby smell. I miss holding you in my arms, sleeping with you, and giving you "snoogies".
I know that the last few hours were very hard for you. I made a few promises to you and I want you to know that I will keep my promises. I promise you will have your pink ballerina bedroom and I will finish your Precious Moments picture.
I promised you that I would let you fly just as soon as your brother got to see you one last time. Thank you for waiting for him. I have dreams of looking up into the sky and seeing you peeking from behind a cloud. You smile your sweet smile, giggle, and wave at me. Then you jump onto a cloud, slide down it, and fly off to be with your angel friends.
Carleigh, my first promise to you is about to come true. I'm sending you all my love forever. It's time to grab your fuzzy pink blanket, spread your tiny angel wings, and fly.
Once upon a time a mommy had a dream in her heart. Her dream was to have a beautiful little girl that she could hold, care for, and most of all, love. That Mommy was me and on November 8, 1999, I gave birth to an angel. You.
Your Daddy and I knew from the very beginning that you would be a little girl. I was so sure of it, that I bought your fuzzy pink blanket before we had even had our ultrasound. I can't even begin to describe how ecstatic we were when the doctor told us you were, indeed, a girl!
We were heartbroken when the doctors told us you would be less than perfect. You would have Trisomy 18 - something that was "incompatible with life" and would cause numerous problems.
Well, they were wrong. You WERE perfect. I will always remember your beautiful blue eyes and long eyelashes. Those were the things I noticed most about you. You showed the world that it was possible for a little girl with Trisomy 18 to live and enjoy life to the fullest.
Carleigh, you have taught me so many things. You have taught me the importance of being thankful for every single day and have shown me what it's like to feel unconditional love. You were the best daughter a mommy could ever ask for.
I miss you so much already, and because of you, my life will never be the same. I miss your smile, the adorable way you would pucker your lips like you wanted a kiss, and your sweet baby smell. I miss holding you in my arms, sleeping with you, and giving you "snoogies".
I know that the last few hours were very hard for you. I made a few promises to you and I want you to know that I will keep my promises. I promise you will have your pink ballerina bedroom and I will finish your Precious Moments picture.
I promised you that I would let you fly just as soon as your brother got to see you one last time. Thank you for waiting for him. I have dreams of looking up into the sky and seeing you peeking from behind a cloud. You smile your sweet smile, giggle, and wave at me. Then you jump onto a cloud, slide down it, and fly off to be with your angel friends.
Carleigh, my first promise to you is about to come true. I'm sending you all my love forever. It's time to grab your fuzzy pink blanket, spread your tiny angel wings, and fly.
carleigh's obituary
Carleigh Lauryn Grace was born on Monday, November 8, 1999, to John and Andrea.
On Saturday, April 8, 2000, at five months of age, she gained her wings and flew away to be with Jesus.
Carleigh accomplished many things during her time here on Earth. She taught others the true meaning of unconditional love. Carleigh was loved dearly by all who knew her and she had a special way of capturing hearts right from the start. People from around the world loved her, followed her legacy of hope, and prayed for her daily, though they had never even met her.
Carleigh was a wonderful baby who will be sadly missed by all those who knew her. Her life will forever impact the lives of others. She showed the world that with a little faith, miracles can happen and that each and every life is significant, no matter the length or duration of time spent here on Earth.
Besides her parents, Carleigh leaves her big brother, of the home; her grandparents; great-grandparents; aunts and uncles; cousins; her godparents; and many, many friends.
* names removed for privacy
On Saturday, April 8, 2000, at five months of age, she gained her wings and flew away to be with Jesus.
Carleigh accomplished many things during her time here on Earth. She taught others the true meaning of unconditional love. Carleigh was loved dearly by all who knew her and she had a special way of capturing hearts right from the start. People from around the world loved her, followed her legacy of hope, and prayed for her daily, though they had never even met her.
Carleigh was a wonderful baby who will be sadly missed by all those who knew her. Her life will forever impact the lives of others. She showed the world that with a little faith, miracles can happen and that each and every life is significant, no matter the length or duration of time spent here on Earth.
Besides her parents, Carleigh leaves her big brother, of the home; her grandparents; great-grandparents; aunts and uncles; cousins; her godparents; and many, many friends.
* names removed for privacy
heaven's special child
A meeting was held quite far from earth,
It's time again for another birth.
Said the angels to the Lord above,
"This special child will need much love,
her progress may be very slow,
accomplishments she may not show,
and she'll require extra care
from the folks she meets down there.
She may not run or laugh or play,
her thoughts may seem quite far away,
in many ways she won't adapt
and she'll be known as handicapped.
So let's be careful where she's sent,
we want her life to be content.
Please Lord, find the parents who
will do this special job for You.
They may not realize right away,
the leading role they're asked to play,
but with this child sent from above
comes stronger faith and richer love,
and soon they'll know the privilege given
in caring for their gift from Heaven.
Their precious charge so meek and mild
is Heaven's Very Special Child.
(Author Unknown)
It's time again for another birth.
Said the angels to the Lord above,
"This special child will need much love,
her progress may be very slow,
accomplishments she may not show,
and she'll require extra care
from the folks she meets down there.
She may not run or laugh or play,
her thoughts may seem quite far away,
in many ways she won't adapt
and she'll be known as handicapped.
So let's be careful where she's sent,
we want her life to be content.
Please Lord, find the parents who
will do this special job for You.
They may not realize right away,
the leading role they're asked to play,
but with this child sent from above
comes stronger faith and richer love,
and soon they'll know the privilege given
in caring for their gift from Heaven.
Their precious charge so meek and mild
is Heaven's Very Special Child.
(Author Unknown)
amazing grace
Amazing Grace, how sweet the sound
That saved a wretch like me
I once was lost, but now I'm found
Was blind, but now, I see.
Twas grace that taught my heart to fear
And grace my fears relieved
How precious did that grace appear
The hour I first believed.
Through many dangers, toils, and snares
I have already come
Tis grace that brough me safe thus far
And grace will lead me home.
The Lord has promised good to me
His word thy hope secures
He will my shield and portion be
As long as life endures
When we've been there, ten thousand years
Bright shining as the sun
We've no less days to sing God's praise
Than when we've first begun.
That saved a wretch like me
I once was lost, but now I'm found
Was blind, but now, I see.
Twas grace that taught my heart to fear
And grace my fears relieved
How precious did that grace appear
The hour I first believed.
Through many dangers, toils, and snares
I have already come
Tis grace that brough me safe thus far
And grace will lead me home.
The Lord has promised good to me
His word thy hope secures
He will my shield and portion be
As long as life endures
When we've been there, ten thousand years
Bright shining as the sun
We've no less days to sing God's praise
Than when we've first begun.
daddy's message to carleigh
My Precious Baby Girl,
I remember when someone told me that there is a special bond between a father and his daughter. A bond so special it just cannot be explained. I never truly understood that until June 10th when your mother and I found out we were going to have you our daughter. Although we already knew deep inside, I was high on cloud nine.
Then in July doctors tried to take you away as they informed us that you had Trisomy 18 and that it was incompatible with life, and continued by suggesting we go ahead and let you go. But with great support from family and friends and our faith in God we knew He would deliver you to us. All we asked for was five minutes so we could just tell you how much you are loved. Not only did God give us the five minutes, he blessed us with five glorious months.
In that time you have taught me so much. You have taught me how to be strong and conquer all obstacles. But most importantly you have taught me unconditional love. You gave me all of your love, despite all of my faults. You have taught us all not to take life for granted, as every day of life is a miracle. And I believe your legacy is the way you have changed some of the doctors' ways in how they view the treatment of children with Trisomy 18 and other terminal illnesses.
I will always treasure all of the wonderful moments we shared together, even the ones that could easily be taken for granted. I long for one last sleepless night in which I could take you and try rocking you to sleep, singing our special songs.
I will miss your bright beautiful eyes that captured all hearts that came in contact with you. Your wonderful way you communicated with us letting us know exactly what you wanted, when either wanting your daddy to hold you or if you wanted your mother's sweet, tender touch.
Being your earthly father, I promise to hold you close and continue your mission to educate others that miracles are real.
As you have gained your wings you are no longer our angel here on Earth, but our angel up in Heaven.
You have truly been the muse and rhyme in my life for the past five months and you forever will be our amazing Carleigh Lauryn Grace.
I remember when someone told me that there is a special bond between a father and his daughter. A bond so special it just cannot be explained. I never truly understood that until June 10th when your mother and I found out we were going to have you our daughter. Although we already knew deep inside, I was high on cloud nine.
Then in July doctors tried to take you away as they informed us that you had Trisomy 18 and that it was incompatible with life, and continued by suggesting we go ahead and let you go. But with great support from family and friends and our faith in God we knew He would deliver you to us. All we asked for was five minutes so we could just tell you how much you are loved. Not only did God give us the five minutes, he blessed us with five glorious months.
In that time you have taught me so much. You have taught me how to be strong and conquer all obstacles. But most importantly you have taught me unconditional love. You gave me all of your love, despite all of my faults. You have taught us all not to take life for granted, as every day of life is a miracle. And I believe your legacy is the way you have changed some of the doctors' ways in how they view the treatment of children with Trisomy 18 and other terminal illnesses.
I will always treasure all of the wonderful moments we shared together, even the ones that could easily be taken for granted. I long for one last sleepless night in which I could take you and try rocking you to sleep, singing our special songs.
I will miss your bright beautiful eyes that captured all hearts that came in contact with you. Your wonderful way you communicated with us letting us know exactly what you wanted, when either wanting your daddy to hold you or if you wanted your mother's sweet, tender touch.
Being your earthly father, I promise to hold you close and continue your mission to educate others that miracles are real.
As you have gained your wings you are no longer our angel here on Earth, but our angel up in Heaven.
You have truly been the muse and rhyme in my life for the past five months and you forever will be our amazing Carleigh Lauryn Grace.
scripture reading and prayer
It makes all the difference in the world and in Heaven when you believe.
I would like to read to you today, some words of comfort from God's Holy word, first and second Corinthians, the fourth and fifth chapters.
For our light, momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. Now we know that if this Earthly tent we live in is destroyed, we have a building from God, an eternal house in Heaven, not built by human hands. Meanwhile we grow, longing to be clothed with our Heavenly dwelling. Because when we are clothed we will not be found naked for while we are in this tent we've grown in our burdens because we do not wish to be unclothed, but to be clothed with our Heavenly dwelling. So that what is mortal may be swallowed up by the light. Now it is God who has made us for this very purpose and has given us this spirit as a deposit, guaranteeing what is to pass.
And then these words from Mark, the tenth chapter, the little children and Jesus:
People were bringing little children to Jesus to have him touch them, but the disciples rebuked them. When Jesus saw this he was indignant. He said to them, "Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it." He took the children in his arms, put his hands on them, and blessed them.
I believe that is what Jesus is doing to Carleigh today. Let us pray.
Almighty and Everliving God. We come into Your presence this day, because we know that we must come to You to find the assurance that we need for a time like this, especially for this mother and this father, for John and Andrea, for these grandparents, and for this family. It's a difficult time. It's been difficult all along. But Father, some way or another you've been able to creep through and touch their lives and their hearts. And through this experience have blessed them in a special way with a little angel that they got to spend five months with. And Andrea got to spend longer than that with her. And we thank you, Dear God, for their faith and their trust in You at this time. And we know today that that little girl is going to be up there helping Jesus as he prepares places for all of us.
It's hard Lord. So we just pray, Father, and You know it more than we do, that it's hard. We know that You've got a big tear in Your eye today too. So we just pray that You would touch those who've lost this dear little child to you, that they would always remember that her spirit is with You. And help us, Dear God, to share with one another and grow in Your spirit. Be with us now as we continue in this time of celebration of a little life that touched many lives.
In the name of Jesus Christ we pray. Amen.
I would like to read to you today, some words of comfort from God's Holy word, first and second Corinthians, the fourth and fifth chapters.
For our light, momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. Now we know that if this Earthly tent we live in is destroyed, we have a building from God, an eternal house in Heaven, not built by human hands. Meanwhile we grow, longing to be clothed with our Heavenly dwelling. Because when we are clothed we will not be found naked for while we are in this tent we've grown in our burdens because we do not wish to be unclothed, but to be clothed with our Heavenly dwelling. So that what is mortal may be swallowed up by the light. Now it is God who has made us for this very purpose and has given us this spirit as a deposit, guaranteeing what is to pass.
And then these words from Mark, the tenth chapter, the little children and Jesus:
People were bringing little children to Jesus to have him touch them, but the disciples rebuked them. When Jesus saw this he was indignant. He said to them, "Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it." He took the children in his arms, put his hands on them, and blessed them.
I believe that is what Jesus is doing to Carleigh today. Let us pray.
Almighty and Everliving God. We come into Your presence this day, because we know that we must come to You to find the assurance that we need for a time like this, especially for this mother and this father, for John and Andrea, for these grandparents, and for this family. It's a difficult time. It's been difficult all along. But Father, some way or another you've been able to creep through and touch their lives and their hearts. And through this experience have blessed them in a special way with a little angel that they got to spend five months with. And Andrea got to spend longer than that with her. And we thank you, Dear God, for their faith and their trust in You at this time. And we know today that that little girl is going to be up there helping Jesus as he prepares places for all of us.
It's hard Lord. So we just pray, Father, and You know it more than we do, that it's hard. We know that You've got a big tear in Your eye today too. So we just pray that You would touch those who've lost this dear little child to you, that they would always remember that her spirit is with You. And help us, Dear God, to share with one another and grow in Your spirit. Be with us now as we continue in this time of celebration of a little life that touched many lives.
In the name of Jesus Christ we pray. Amen.
when you believe - mommy's song
Many nights we've prayed
With no proof anyone could hear
In our hearts a hopeful song
We barely understood
Now we are not afraid
Although we know there's much to fear
We were moving mountains
Long before we knew we could
There can be miracles
When you believe
Though hope is frail
It's hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
You will when you believe
In this time of fear
When prayer so often proved in vain
Hope seemed like the summer birds
Too swiftly flown away
Yet now I'm standing here
With heart so full I can't explain
Seeking faith and speaking words
I never thought I'd say
There can be miracles
When you believe
Though hope is frail
It's hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
You will when you believe
They don't always happen when you ask
And it's easy to give in to your fear
But when you're blinded by your pain
Can't see your way clear through the rain
A small but still resilient voice
Says help is very near
There can be miracles
When you believe
Though hope is frail
It's hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
Now you will
You will when you believe
With no proof anyone could hear
In our hearts a hopeful song
We barely understood
Now we are not afraid
Although we know there's much to fear
We were moving mountains
Long before we knew we could
There can be miracles
When you believe
Though hope is frail
It's hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
You will when you believe
In this time of fear
When prayer so often proved in vain
Hope seemed like the summer birds
Too swiftly flown away
Yet now I'm standing here
With heart so full I can't explain
Seeking faith and speaking words
I never thought I'd say
There can be miracles
When you believe
Though hope is frail
It's hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
You will when you believe
They don't always happen when you ask
And it's easy to give in to your fear
But when you're blinded by your pain
Can't see your way clear through the rain
A small but still resilient voice
Says help is very near
There can be miracles
When you believe
Though hope is frail
It's hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
Now you will
You will when you believe
invocation
Let us pray.
Oh God of peace and love, who has taught us that in quietness and confidence shall be our strength, in faith and love shall be our refuge. By the might of Thy spirit, lift us, we pray into Thy presence where we may be still and know that Thou art God and that all is well with the soul of little Carleigh.
In Jesus Christ our Lord, Amen.
Oh God of peace and love, who has taught us that in quietness and confidence shall be our strength, in faith and love shall be our refuge. By the might of Thy spirit, lift us, we pray into Thy presence where we may be still and know that Thou art God and that all is well with the soul of little Carleigh.
In Jesus Christ our Lord, Amen.
brahm's lullaby
Lullaby and good night
In the sky stars are bright
Around your head flowers gay
Set your slumbers till day
Lullaby and good night
In the sky stars are bright
Around your head flowers gay
Set you slumbers till day
Close your eyes now and rest
May these hours be blessed
Close your eyes now and rest
May these hours be blessed
Bonne nuit cher enfant
Dans tes langes blances
Repose joyeux en revant des cieux
Quand le jour reviendra
Tu te reveilleras
Quand le jour reviendra
Tu te reveilleras
Lullaby and good night
In the sky stars are bright
Around your head flowers gay
Set your slumbers till day
In the sky stars are bright
Around your head flowers gay
Set your slumbers till day
Lullaby and good night
In the sky stars are bright
Around your head flowers gay
Set you slumbers till day
Close your eyes now and rest
May these hours be blessed
Close your eyes now and rest
May these hours be blessed
Bonne nuit cher enfant
Dans tes langes blances
Repose joyeux en revant des cieux
Quand le jour reviendra
Tu te reveilleras
Quand le jour reviendra
Tu te reveilleras
Lullaby and good night
In the sky stars are bright
Around your head flowers gay
Set your slumbers till day
opening scriptural sentences
From Isaiah 61, 1 through 3: The spirit of the Lord God is upon me, because the Lord hath annointed me to preach good tidings unto the meek. He hath sent me to bind up the broken-hearted, to comfort all who mourn, to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness that they might be called trees of righteousness.
you'll be in my heart - daddy's song
Come stop your crying it will be all right.
Just take my hand, hold it tight.
I will protect you from all around you.
I will be here; don't you cry.
For one so small you seem so strong.
My arms will hold you, keep you safe and warm.
This bond between us can't be broken.
I will be here; don't you cry.
'Cause you'll be in my heart,
yes, you'll be in my heart
from this day on now and forevermore.
You'll be in my heart no matter what they say.
You'll be here in my heart always.
Why can't they understand the way we feel?
They just don't trust what they can't explain.
I know we're diff'rent,
but deep inside us we're not that different at all.
And you'll be in my heart,
yes, you'll be in my heart
From this day on now and forevermore
Don't listen to them, 'cause what do they know?
We need each other, to have, to hold.
They'll see in time, I know.
When destiny calls you you must be strong.
I may not be with you, but you've got to hold on.
They'll see in time, I know.
We'll show them together,
'cause you'll be in my heart.
Believe me, you'll be in my heart.
I'll be there from this day on, now and forevermore.
You'll be in my heart no matter what they say.
You'll be here in my heart always.
Always. I'll be with you.
I'll be there for you always, always and always.
Just look over your shoulder.
Just look over your shoulder.
Just look over your shoulder; I'll be there always.
Just take my hand, hold it tight.
I will protect you from all around you.
I will be here; don't you cry.
For one so small you seem so strong.
My arms will hold you, keep you safe and warm.
This bond between us can't be broken.
I will be here; don't you cry.
'Cause you'll be in my heart,
yes, you'll be in my heart
from this day on now and forevermore.
You'll be in my heart no matter what they say.
You'll be here in my heart always.
Why can't they understand the way we feel?
They just don't trust what they can't explain.
I know we're diff'rent,
but deep inside us we're not that different at all.
And you'll be in my heart,
yes, you'll be in my heart
From this day on now and forevermore
Don't listen to them, 'cause what do they know?
We need each other, to have, to hold.
They'll see in time, I know.
When destiny calls you you must be strong.
I may not be with you, but you've got to hold on.
They'll see in time, I know.
We'll show them together,
'cause you'll be in my heart.
Believe me, you'll be in my heart.
I'll be there from this day on, now and forevermore.
You'll be in my heart no matter what they say.
You'll be here in my heart always.
Always. I'll be with you.
I'll be there for you always, always and always.
Just look over your shoulder.
Just look over your shoulder.
Just look over your shoulder; I'll be there always.
carleigh's memorial service
Carleigh's service was on April 11, 2000, at 2 p.m., at The First United Methodist Church.
The words of the songs you are getting ready to read are the ones that were played at her funeral.
The words of the songs you are getting ready to read are the ones that were played at her funeral.
On Monday, November 8, 1999, a beautiful angel entered our lives. Actually, she was in our lives sooner, for she was in my tummy for nine precious months.
Carleigh gained her angel wings on Saturday, April 8, 2000. She was exactly five months old. We asked God for five minutes with Carleigh, and He blessed us with five glorious months.
On Tuesday, April 11, we laid Carleigh's body to rest. We chose a beautiful place for her, in the shade of a beautiful pine tree. We planned her service in hopes that it was all that she would have wanted it to be.
Carleigh, we love you and we miss you so much. We look forward to the day that we can hold you in our arms again.
All our love forever,
Mommy, Daddy, and B
We have had numerous friends, local and Internet who have asked us if we have set up a memorial fund for Carleigh.
Please send your donations to Community Hospice of America.
Had it not been for our nurses, Reah, Bunnie, Miranda, and Lynn, and all our other friends at Hospice, Carleigh would have never gotten to come home and be with us.
We will be forever grateful for the care they gave Carleigh during her first month of life.
If you send a gift, PLEASE make sure you give your name and be sure to tell them it is in memory of Carleigh. Thank you!
There is so much more for me to say about my sweet baby. Now that I have laid her to rest, I can finish what I was meant to do. Please keep checking back, as Carleigh's Legacy will live on forever in our hearts and through this site.
Andrea (Carleigh's Mommy)
Carleigh gained her angel wings on Saturday, April 8, 2000. She was exactly five months old. We asked God for five minutes with Carleigh, and He blessed us with five glorious months.
On Tuesday, April 11, we laid Carleigh's body to rest. We chose a beautiful place for her, in the shade of a beautiful pine tree. We planned her service in hopes that it was all that she would have wanted it to be.
Carleigh, we love you and we miss you so much. We look forward to the day that we can hold you in our arms again.
All our love forever,
Mommy, Daddy, and B
We have had numerous friends, local and Internet who have asked us if we have set up a memorial fund for Carleigh.
Please send your donations to Community Hospice of America.
Had it not been for our nurses, Reah, Bunnie, Miranda, and Lynn, and all our other friends at Hospice, Carleigh would have never gotten to come home and be with us.
We will be forever grateful for the care they gave Carleigh during her first month of life.
If you send a gift, PLEASE make sure you give your name and be sure to tell them it is in memory of Carleigh. Thank you!
There is so much more for me to say about my sweet baby. Now that I have laid her to rest, I can finish what I was meant to do. Please keep checking back, as Carleigh's Legacy will live on forever in our hearts and through this site.
Andrea (Carleigh's Mommy)
4/08/2000
This morning, April 8, 2000, at 5:35 a.m., my precious angel, Carleigh Lauryn Grace grabbed her wings and flew off to Heaven to be with her angel friends. She was exactly 5 months old. My heart is broken, that's all I can say. I am in a daze and I'm not ready to go on with my life. I live only for my son, not for myself.
On my way to the hospital last night, John called and said they had agreed to transfer her to St. Louis on Saturday morning (today). When I got there, she was doing so well. She was saturating 100% and breathing better than I had ever seen her breathe. She was so comfortable.
I guess you could say it was the calm before the storm, because things started changing for the worse. I had dozed off and was awakened to nurses saying that they couldn't get the saturation monitor to pick her up. She looked very uncomfortable and I scooped her up and held her. The nurses kept commenting on how they knew she didn't like for them to mess with her. She was fighting them with every ounce of energy she had. I told John that she was going to fly away, I could tell.
They moved her to PICU at about 3 a.m. They were bagging her and suctioning crud out of her. She had such poor muscle tone that she couldn't clear secretions like we can. The doctor pulled us aside to tell us the news. We had to make a choice - let Carleigh fly away, or let the doctor intubate her and let her be forever bound to a ventilator, the hospital, and pain. It was the hardest decision we have had to make in our lives. We never expected to have to choose - we thought God would just take her quickly.
It became apparent to us what we should do when we looked into that sweet little face. She was so tired and we knew that she wanted to go. They bagged her until we could get her brother brought to the hospital. We let him see her one last time - he still doesn't understand really what's going on. They gave her some medicine so she wouldn't feel pain and I held her close and sang to her until she slipped away.
I can honestly say that I held an angel. I actually felt her fly out of my arms. I was amazingly calm when it happened, though now I am literally falling apart.
Thank you for all the times you have prayed for us. I am working on Carleigh's website. Please keep checking in for something new. I have to make it wonderful to do her justice, because she is the most wonderful thing that ever happened to me.
On my way to the hospital last night, John called and said they had agreed to transfer her to St. Louis on Saturday morning (today). When I got there, she was doing so well. She was saturating 100% and breathing better than I had ever seen her breathe. She was so comfortable.
I guess you could say it was the calm before the storm, because things started changing for the worse. I had dozed off and was awakened to nurses saying that they couldn't get the saturation monitor to pick her up. She looked very uncomfortable and I scooped her up and held her. The nurses kept commenting on how they knew she didn't like for them to mess with her. She was fighting them with every ounce of energy she had. I told John that she was going to fly away, I could tell.
They moved her to PICU at about 3 a.m. They were bagging her and suctioning crud out of her. She had such poor muscle tone that she couldn't clear secretions like we can. The doctor pulled us aside to tell us the news. We had to make a choice - let Carleigh fly away, or let the doctor intubate her and let her be forever bound to a ventilator, the hospital, and pain. It was the hardest decision we have had to make in our lives. We never expected to have to choose - we thought God would just take her quickly.
It became apparent to us what we should do when we looked into that sweet little face. She was so tired and we knew that she wanted to go. They bagged her until we could get her brother brought to the hospital. We let him see her one last time - he still doesn't understand really what's going on. They gave her some medicine so she wouldn't feel pain and I held her close and sang to her until she slipped away.
I can honestly say that I held an angel. I actually felt her fly out of my arms. I was amazingly calm when it happened, though now I am literally falling apart.
Thank you for all the times you have prayed for us. I am working on Carleigh's website. Please keep checking in for something new. I have to make it wonderful to do her justice, because she is the most wonderful thing that ever happened to me.
4/06/2000
Imagine being startled awake three times beginning at 5 a.m. by your daughter's apnea monitor. The blinking red light and the screaming siren say "slow heart".
Imagine looking at your precious baby and seeing a horrified look on her face, purple, and no movement at all.
Imagine scooping up that precious girl into your arms, crying, and screaming at the top of your lungs, "Oh, God, please don't let her leave me!!"
You have just experienced my morning, April 6, 2000, the scariest morning of my life, thus far.
Carleigh was taken by ambulance to the hospital at about 9 a.m., Central Time. She had blood drawn and a chest x-ray. The ER doctor cannot tell us why our daughter's heart insists on beating slowly. Her three alarms in the early a.m. meant that her heartrate had dropped below 80, which is low for a baby her age. After that, I freaked out and set her apnea monitor to alarm when she drops below 100. She has alarmed at least 7 times today on that setting.
We were released from the ER at about noon and went to eat before our promised trip to the pediatrician at 1:30. Carleigh was checked out there and sent back to be admitted to the hospital. She has lost 6 ozs. since last Tuesday, and now we have to make a decision about the dreaded g-tube. We also still have to talk to the ENT about her laryngomalacia. Though they still cannot tell us why her heart is slow, they feel it could be connected to her breathing problems.
All I know is that one Mommy and Daddy aren't going to be able to sleep tonight. John is at the hospital with Carleigh and I am home with B. I am so scared something will "happen" while I'm not there, but I know that our son needs his mommy too. It's very hard to be two places at once and to choose where to be.
I talked to John once and Carleigh had alarmed again. Three nurses came in to "bag" her to help her breathe, but ended up not having to. The bag is still in her room. She has also just received an IV.
Tomorrow she will do a Barium Swallow Test to determine if she has reflux and how bad it is. If she has to have surgery for the reflux, it takes about an hour. Surgery for the g-tube is 10 minutes, but she would still have to have general anesthesia.
Please pray for Carleigh. Please pray harder than ever before. We know that she is in God's hands and that He has been so gracious to us. But still I find myself not ready to give up my daughter. I do not want her to suffer or be in pain. I am hoping that this is something that can be fixed easily, but with no one knowing what is wrong with her heart, I don't see how.
Please pray that God will give us the answers. Should we put her through surgery or not?
There has been a song running through my head all day long. I have been singing it to my sweet Carleigh. It is by Leann Rimes and these are a few of the words:
How do I, get through one night without you,
If I had to live without you, what kind of life would that be?
Oh, I, Baby, I don't know what I would do,
I'd be lost if I lost you, if you ever leave,
Baby, you would take away everything good in my life,
And tell me now,
How do I live without you, I want to know
How do I breathe without you, if you ever go
How would I ever, ever survive?
How do I, oh, how do I live?
Again, please pray for Baby Carleigh.
Thank you,
Andrea. (Carleigh's Mommy)
Imagine looking at your precious baby and seeing a horrified look on her face, purple, and no movement at all.
Imagine scooping up that precious girl into your arms, crying, and screaming at the top of your lungs, "Oh, God, please don't let her leave me!!"
You have just experienced my morning, April 6, 2000, the scariest morning of my life, thus far.
Carleigh was taken by ambulance to the hospital at about 9 a.m., Central Time. She had blood drawn and a chest x-ray. The ER doctor cannot tell us why our daughter's heart insists on beating slowly. Her three alarms in the early a.m. meant that her heartrate had dropped below 80, which is low for a baby her age. After that, I freaked out and set her apnea monitor to alarm when she drops below 100. She has alarmed at least 7 times today on that setting.
We were released from the ER at about noon and went to eat before our promised trip to the pediatrician at 1:30. Carleigh was checked out there and sent back to be admitted to the hospital. She has lost 6 ozs. since last Tuesday, and now we have to make a decision about the dreaded g-tube. We also still have to talk to the ENT about her laryngomalacia. Though they still cannot tell us why her heart is slow, they feel it could be connected to her breathing problems.
All I know is that one Mommy and Daddy aren't going to be able to sleep tonight. John is at the hospital with Carleigh and I am home with B. I am so scared something will "happen" while I'm not there, but I know that our son needs his mommy too. It's very hard to be two places at once and to choose where to be.
I talked to John once and Carleigh had alarmed again. Three nurses came in to "bag" her to help her breathe, but ended up not having to. The bag is still in her room. She has also just received an IV.
Tomorrow she will do a Barium Swallow Test to determine if she has reflux and how bad it is. If she has to have surgery for the reflux, it takes about an hour. Surgery for the g-tube is 10 minutes, but she would still have to have general anesthesia.
Please pray for Carleigh. Please pray harder than ever before. We know that she is in God's hands and that He has been so gracious to us. But still I find myself not ready to give up my daughter. I do not want her to suffer or be in pain. I am hoping that this is something that can be fixed easily, but with no one knowing what is wrong with her heart, I don't see how.
Please pray that God will give us the answers. Should we put her through surgery or not?
There has been a song running through my head all day long. I have been singing it to my sweet Carleigh. It is by Leann Rimes and these are a few of the words:
How do I, get through one night without you,
If I had to live without you, what kind of life would that be?
Oh, I, Baby, I don't know what I would do,
I'd be lost if I lost you, if you ever leave,
Baby, you would take away everything good in my life,
And tell me now,
How do I live without you, I want to know
How do I breathe without you, if you ever go
How would I ever, ever survive?
How do I, oh, how do I live?
Again, please pray for Baby Carleigh.
Thank you,
Andrea. (Carleigh's Mommy)