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!

pictures

This was Carleigh's visitation on Monday, April 10, 2000. The flowers you see pictured aren't even 1/4 of what we received.

This was at the church on Carleigh's Memorial Day, Tuesday, April 11, 2000.

Carleigh's Special Place, shortly after her funeral.

April 15, 2000 The sun was setting, the sky was pink and full of clouds. We call it "Carleigh's Playground". We think Carleigh was having a great time!

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.

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

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.

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, B, of the home; her grandparents, John and Margie and Glen and Karen; great-grandparents, Helen, Sterlin and Ruby, Glendola, and Paul; aunts and uncles, Doug and Melanie, David and Janet, and Kim and Jeff; cousins, Blake, Bailey, and Meagan; her godparents, Ruben and Debbie; and many, many friends.

* last 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)

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.

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.

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.

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

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.

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

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.

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.

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)

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.

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)

Mommy is almost cured! She still has her cough, but her voice is back!

I am congested and feeling yucky. It's hard to breathe when you have laryngomalacia and congestion!!

I am still eating like a "piggy girl" and Mommy hopes that I am gaining weight. I am getting really tall and it makes me look more skinny.

Guess what? B has PINK EYE! Mommy can't figure out how he got it because he doesn't go many places. She guesses he got it from going to the doctor with me. So now he is getting the medicine in his eyes. He screams and throws a fit. BOYS! I thought they were supposed to be tough!!

Tomorrow I get my splint. I'll let you know how it goes.

Mommy is feeling some better. Her voice is coming back and her sore throat and congestion are gone. She has had a bad headache today though. She got some emails from people saying they found it really enjoyable to hear the updates from me, so you may hear more from me around here. :o) I'm getting big enough to type! I'm almost 5 months old now! *grins!*

I have been feeling a little under the weather too. I guess Mommy and I are kind of sharing our cold/RSV symptoms. Daddy has been giving me my breathing treatments again and Mommy and I slept almost all day today. I had lost my appetite for formula for awhile, but now it's getting a little better. I've survived the past 2 days on Pedialyte and baby food.

Tomorrow I start Occupational Therapy (OT). My OT is named Nicole and I'm really excited about meeting her, especially since she's going to make the splint for my knee. Mommy and Daddy still think it's been causing me pain because I scream when I hyperextend it.

I will also be starting Speech Therapy (ST) soon. Speech Therapy for a girl who can't talk yet, you say? Well, STs do more than help you talk. I have a tendency to want to hold my tongue up like I'm waiting for Mommy to put something under it. I hear that's not the correct way to hold your mouth (I don't see a problem with it!), so the ST is going to teach me the "proper" way to hold my mouth. (Sheesh! I'm just a baby, gimme a break!!)

I will start Physical Therapy (PT) soon too. I'm sure I'll have lots of stories to tell you about OT, ST, and PT.

I would like to send HUGE HUGS to my Godparents (Ruben and Debbie) and my Godsister (Sienna). Debbie is starting her new job tomorrow and I don't want her to be sad. It is the first time she has been to work since Sienna was born three years ago. It is a big adjustment for all of them, so I just want to let them know I love them. :o)

Mommy is still sick. Yesterday her whole voice was almost gone!

I went to the orthopedist today. We got some news that we really didn't expect. My hip IS NOT dislocated! YIPPEE!! He said that little almost five-month-olds like me are pretty tricky with hips and sometimes positioning will make them appear dislocated. He said he can't guarantee that my hip will stay in place, but at least it looks good for now. :o)

As for my feet, well, that's a different story. I actually only have one clubfoot, my left one. My right foot has some big long name that Mommy can't remember. She only remembers "congenital" at the beginning of it. Which "congenital" means I was born with it. My left foot is clubbed so tightly that the doctor said that putting it into casts would do more damage than good. He said the skin on my feet and ankles is very tender and soft and putting it in casts wouldn't be good. Besides, it wouldn't be good to force my foot one way when my bones want to go the other way. As Mommy suspected, my left foot will have to have surgery someday.

Mommy expected me to get a cast on my right foot. She had already planned to pick yellow, as my Easter dress is yellow and she wanted them to match. WRONG! My right foot has to have surgery someday too. :o( The doctor said casting that foot wouldn't do any good because it would just fall back to its original position. (Mommy doesn't really understand why.) The doctor was very nice and said that he didn't want to do anything to risk my life. He said that I have already beat some numbers because I am almost five-months-old and still going strong. He doesn't want to do a surgery that will put my life at risk - which you all know what my heart thinks of surgeries! YIKES!! Anyway, he said that when I'm a big girl, if I can show him that I am going to walk, he will fix my feet. :o)

Now, of course, since my hip was good, that doesn't mean we can have all good news... Mommy had noticed that my leg between my knee and my ankle looked "funny". It kind of has a swoop in it. The doctor noticed it too and noticed that my knee will pop right out of socket! He said that is really bad for my ligaments and tendons, even if I like having my leg that way. When I start physical therapy (hopefully next week) my therapist has to make a splint that will keep my knee bent at a 20 degree angle. Also, the splint will run down to my foot (which is conveniently the left one) and will splint my foot a little to try to curve it back in the right direction. It won't correct the club, but it may make it where Mommy could get a shoe on my foot - if my feet would ever get big enough for shoes!

That's about all for my doctor visits. Thanks for praying for me!

Love,
Carleigh

Hi Everyone! This is Carleigh! My mommy usually does the updates, but she is sick. She has a really bad sore throat and has almost lost her voice, so I get to do the talking. :o)

I went to the doctor yesterday. I weigh 8 lbs. 4 ozs. and am 22 inches tall. I didn't get in trouble for my weight this time. The doctor said I am gaining a little or at least maintaining and the doctor said I was a pretty pinkish color, so she's not going to worry about me. Whew!!

Also, I got my second round of immunizations. I was so little and cute that the nurse didn't want to give them to me. She didn't want to make me cry. She finally gave them to me, but I only cried a little. I'm such a big girl!

B got his stitches taken out of his face and he made more of a fuss than I did! He was screaming that he wanted Daddy and he wanted to go home.

Later in the day I went to see the geneticist. She was impressed with my pretty pink color and with how much I have grown. The last time she saw me was December 31st and I was a lot smaller then. She was surprised to know that I had been through two surgeries and had had RSV. She just talked with Mommy most of the time (Mommy had a little bit of voice left then) and she also took pictures of me and B so she can remember what we look like.

Well, that's about all for my doctor visits. We will see an orthopedist tomorrow, so there will be another update then. Maybe mommy's voice will still be gone. I hope so, 'cause getting to type is fun!! :o)

Hugs to all my Internet friends,
Carleigh Lauryn Grace (almost 5 months old now!!)

Not a whole lot happening here at Carleigh Central. We did find that the correct spelling for our newest discovery about Carleigh is laryngomalacia. She is still taking Zantac for the laryngomalacia. We have noticed that it really acts up at night and early in the morning. I guess that makes sense. There are a lot of nights that I go to bed not feeling well and then in the mornings I wake up with a scratchy throat or stuffed up. The laryngomalacia really aggravates Carleigh. She will be breathing along just doing fine and then start screaming. She is getting so used to it that she can catch herself before she even turns purple! I feel she is doing so much better than she was. We bought her a "Teeny Weeny Boppy", which is a round thing that can go around her neck. Usually they are used for children 18 months and younger in their car seats. When they fall asleep, the Boppy keeps their head from falling forward or to the sides. We use the Boppy as a little neck roll for Carleigh. When her neck is positioned a certain way, her snoring stops and her laryngomalacia doesn't act up. We bought Carleigh's first swim suit this weekend! She is going to look like a little ballerina. It looks more like a ballerina dress than a swimsuit! It's pink with three little white roses on it. We have a little pool for B, so I'm sure Carleigh will enjoy "swimming" with him. We are not going to immerse her totally, just hands and feet, but I wanted her to look all "official" and be in a swimsuit. :o) This will be a busy week. Tuesday we go to the pediatrician and to the geneticist clinic. On Thursday we have an orthopedic appointment to check out her hip and her feet. We were supposed to have Spina Bifida Clinic on Wednesday, but we're not really sure about it. I have to call tomorrow. We also have Parents As Teachers scheduled for Wednesday AND we are supposed to start therapy (Physical, Occupational, and Speech) sometime soon. I'll post more Tuesday night after our appointments. Oh, we ended up in the Emergency Room again! This time it was for B, not Carleigh!! B is now the proud owner of two stitches IN HIS FACE! He fell and hit his face (about ½ inch from his eye at the top of his cheekbone) on the edge of a step. His stitches will be removed on Tuesday, when Carleigh sees the pediatrician.

We're home from the hospital. Carleigh has larengo malacia. There are little flaps around her voice box that sometimes "flip" up when she breathes in. They go over her voice box and keep her oxygen from getting to her lungs. That is why she has been turning purple at times.

The ENT specialist said that reflux can cause it to be worse. I told him she wasn't vomiting, but he said she probably still has reflux, only it's the kind where her stomach acid moves backward up her esophagus. She has been put on Zantac to try to control the reflux. If the Zantac doesn't work, we will have to look into surgery. There is a laser surgery that can be done, but it requires general anesthesia, and we all know how Carleigh responds to that!

The other surgery is a tracheotomy (sp?) that can be done under local anesthesia. I cannot even imagine Carleigh getting a tracheotomy! It is the absolute last resort - even the ENT said so. We are praying that the Zantac works. We are also trying different kinds of positioning to open her airway more, which sometimes includes sleeping on her stomach. Good thing we have an apnea monitor!! I'm very afraid of SIDS!

Carleigh has gained more weight! This morning she was a whopping 8 lbs. 10 ozs.!! I had her reweighed before we left because at the first check, she had some wires stuck on her. Without the wires she was 8 lbs. 7 ozs., which is still a gain. We wanted to know an accurate weight so when we go to the pediatrician next week we can tell her the 8 lbs. 10 oz. was the result of cheating with a few wires. :o)

Carleigh is in the hospital again. Last night she was having episodes of breathing, then pausing, then making a snorting sound. When we would look at her after the "snort" her nose, mouth, and around her eyes were purple. Then she would start crying and breathing normally again.

We were told when she was born that her snorting was caused by her Chiari Malformation. I have since found that Trisomy 18 children sometimes have obstructions which cause them to snore. We called the doctors' office and the doctor on call said since she is having times that she is purple, we needed to take her to the emergency room. We arrived at the hospital at about 9 p.m. and were in the ER until around midnight. Then they admitted her and moved her to the 5th floor (pediatrics). Her x-rays show no sign of obstruction, but she does have narrow airways. That doesn't surprise me at all, because all of her is petite! So now we're just playing the waiting game until tomorrow when our pediatrician comes.

We are expecting to get to bring Carleigh home tomorrow, but it will be up to the pediatrician on whether or not Carleigh sees an Ear/nose/throat specialist. I am home tonight with B. We don't want him to feel left out. :o)

Oh, and Carleigh is up to 8 lbs. 5 ozs.! She has gained 1 ounce each day since we last saw the pediatrician! Hopefully she's on her weight gaining climb again!!

Keep Miss Carleigh in your thoughts and prayers, as I know you all already do. We'll be back home soon - we hope!!

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)

Having Carleigh with us each day is always good news. In fact, it's the best we could possibly have!

Today we have some good news from one of Carleigh's doctors - which we haven't had good "doctor news" in awhile! Carleigh's eyes are HEALTHY!!! The eye doctor said that is very good, because hydrocephalus usually does a lot of nerve damage to the eyes. Carleigh does have astigmatism (sp?) in both eyes. I was not surprised by that, because I, myself have astigmatism in one of my eyes. The doctor said for now the astigmatism is not bad enough to do damage to her eyes.

Since she is already behind developmentally, he wants to wait to prescribe glasses. She still has what I call "baby eyes", you know, the ones that don't focus right unless you are really close to them. We go back to see him in June, so I may have a seven-month-old with glasses!

For her weight check she is up to 8 lbs., 1 oz. Not as much as we would have liked,
but at least she's not losing!! Starting the 28th, we have numerous doctors' appointments.

On the 29th, Carleigh and I will have to spend the night at St. Louis, as we have back to back days of Dr. appts. Tomorrow we're off to St. Louis to see the neurosurgeon. It's a checkup for her shunt, so I'll post more tomorrow. :o)

We went to an orthopedist today. Carleigh does have a dislocated hip - it's her left one, not the right one. The doctor mentioned a Pavlik harness that would go onto Carleigh's body and attempt to put her hip back into place. His concern, though, was with her Spina Bifida. I guess putting her legs into the harness could bother her back. He wants us to talk to our neurosurgeon on Wednesday and ask him which orthopedist he works with. They will make the decision at St. Louis Children's whether or not to do the Pavlik harness.

As for the clubfeet, he said that we need to keep working with them and keeping them soft. They don't do surgery for clubfeet until age one, but it is possible that Carleigh will have to have a cast on her left foot. That will also be left for the doctor at St. Louis to decide. Carleigh is too small for AFO's. It would be nice if she could fit into them as they are removable braces, rather than casts.

Tomorrow we see the pediatric opthamologist and the pediatrician. Please think "big numbers" as Carleigh will be weighed tomorrow. We will be REALLY happy if she is 8 lbs., 6 ozs. or more!!!

Since coming home from the hospital, Carleigh has not faired too well at times. She still has so much congestion and runny gunk in her that it's hard for her to suck her formula through the bottle. I have kept her on Pedialyte to keep fluids in her and yesterday I called the doctor. She is now on breathing treatments. We have a nebulizer and her medicine is called Xopenex. It is supposed to have fewer side effects than Albuterol. She has a treatment every 3 to 4 hours as needed. It is helping already. The congestion is starting to break up some and she is back to drinking her Enfamil again. She often scares me to death with all of her little tricks that she does.

I found out that there is a special growth chart for Trisomy 18 babies. Our pediatrician has been using the regular chart, which Carleigh is still under the 5th percentile on it. On the T18 chart, Carleigh is a WHOPPING 50th percentile!!! I am so excited that she is doing well in comparison to her T18 friends. :o)

I have recently joined a Trisomy mailing list. I "met" a family who had Baby Noah the same day as Carleigh was born. Noah got his wings and flew off to Heaven just eight days after he was born. We know he is smiling down on Carleigh right now.

Happy Four-Months-Old Birthday to Carleigh!! We celebrated by coming home from the hospital yesterday! We love to spend our birthdays at home!!

I had planned on getting Carleigh's pictures made today, but since we just left the hospital, we'll wait until early next week.

As for Miss Carleigh, she's doing great! She came home from the hospital on one liter of oxygen. By yesterday afternoon though, we already had her turned back down to 1/2.

She is on a new machine called a pulse oximeter. It measures how much oxygen is saturated into her blood. It's a harmless machine that has a little probe that is taped to her foot, hand, big toe, or thumb. Our problem is that she is getting so active that the machine alarms a lot trying to find her. She won't keep those little feet still - which for nurses is a nuisance, but for us is a blessing! :o)

Carleigh is still pretty congested and has a lot of drainage. We have to suction her a lot, but she is not receiving breathing treatments at home.

I would like to take this time to thank everyone on the fifth floor of the hospital who helped care for Carleigh. I guess all things happen for a reason, as the hospital was given a chance to "redeem" themselves. We no longer hold a grudge for the hospital itself, just the certain people who refused to care for Carleigh as a newborn. Everyone we dealt with for this trip was positive and never mentioned the word "die". They were interested in knowing all about Carleigh, what all of her
little special areas are, what she likes, and what she dislikes. We believe in giving credit where credit is due, so THANKS to all of our FRIENDS on Pediatric Floor #5!! :o)

Also, Carleigh received the hearing test that she was denied as a newborn. We knew her hearing was not good, but we wanted to know exactly what we are dealing with. The test required Carleigh to be asleep for an hour and they put a series of clicks into her ears and measured the brain activity. Even though we do not have the results, we know that Carleigh pretty much requires 85 decibles to hear well. That is the equivalent of turning your tv up as loud as it will go. We don't know if hearing aids will help at this time, so for now, we're just talking a little louder and Carleigh is "talking" right back to us.

Carleigh's formula has been changed from Enfamil with Iron to Enfamil Lacto-free. She has been having extreme diaper rashes and the pediatrician thinks it is from the way she is processing her formula. If we take away the lactose, the diaper rash should disappear.

We are also supposed to give her five teaspoons of rice cereal a day (which is a lot) and add in baby food whenever we can. We are working with the pediatrician and a nutritionist to get Carleigh up to a nice weight. Our goal is the 25th percentile - she is currently under the 5th percentile. I think this is a large goal, especially considering that Blake is only on the 20th percentile!!

On Monday, Carleigh will have her vision test. This was another test denied to her in the hospital. It is also another test in which we are expecting the worst and praying for the best. We know her vision is impaired, we are praying that it's nothing big and that some cute, tiny glasses can fix.

Then on Tuesday, she will go to the pediatrician for a weight check and to an orthopedist. The orthopedist is a new one. We knew we would see him eventually because of Carleigh's bilateral clubfeet, but it appears on Carleigh's x-rays that she could have a displaced hip. If the hip is displaced, she will have to wear a special contraption to get it back into place.

This child never ceases to amaze me. With her, we take one step forward and two steps back. Through it all she is a trooper. I have NEVER seen such a small child go through so much - I guess that's why she qualifies as our little miracle. God must approve of what we are doing for Carleigh and Carleigh must love to be with us - because she is still our Angel on Earth - and we like it that way! :o)

This is what happened to Carleigh - as well as how she is doing now:

Carleigh had a doctor's appt. on Thursday morning. When we put her on the scale, she had gained a big fat ZERO!! I just knew the ped. was going to be on our cases, but she wasn't. I explained what had been happening since we had come home from the shunt revision.

Carleigh has been congested since being pulled from the ventilator. I called the doc's office and our doc had hurt our back and wasn't there, so I had to talk to a different doc. He didn't seem too concerned and put her on Delsum, which didn't do any good. (That was on Wed. the 16th.) By Sunday night, she had the runniest nose I had ever seen. Monday morning I called back to the doc's office and was stuck with the same idiot because our doc still wasn't there. I told him of her symptoms and that I was very concerned about RSV because I knew it was very serious in babies and would be even more serious with her. He said it didn't sound like RSV to him because she had no fever or wheezing and told me if she did get a fever he would have to see her.

Maybe I haven't been paying attention, but I was unaware that there is a "snot test" for RSV. Had I known, I would have insisted on a test. So here we sat for two weeks with a congested, snotty kid until our appt. with our pediatrician. The FIRST THING she did was a chest x-ray and a RSV test.

So, on Thursday evening, Carleigh was transported to the hospital via ambulance - RSV positive! The idiot doctor that told us she didn't have it (without doing a test) currently rates right up there with the idiots from the NICU.

Oh, and by the way, she is in the hospital that she was born in. My heart sank when we knew she had to go there. I have watched them like a hawk. They consider her latex precautions an actual allergy and are extremely careful. We have had a wonderful experience with them. They are treating her like "any other" baby with RSV. She started in the PICU and was moved to the floor the next day. It's amazing what getting into an elevator and riding up one floor can do for you!!

Now about Miss Carleigh... Her chest x-rays are clear. She is not showing any signs of pneumonia. (THANK GOODNESS!!) She has an NG tube, but has almost worked her way back up to normal feeds, and I'm predicting they will remove the tube tomorrow. She was so congested that she couldn't even suck a bottle on Friday morning. She receives breathing treatments every three hours. Otherwise, she's normal little Carleigh - happy, awake, and "talking" until 3 a.m.! Thanks for your extra prayers and please keep saying them until our little one is safely home.

I can't make this long. An ambulance is on the way to pick up Carleigh. She has RSV and has to be monitored in intensive care in the hospital.

All we know for now is that it hasn't caused pneumonia, but with her heart problems, they feel the need to monitor her closely. Please say an extra prayer for us and I'll update again as soon as we're home.

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)

We have just been through a major ordeal! On Thursday, the 10th, I called the neurosurgeon's office because Carleigh had had a rough night. Her shunt tubing was still swollen around it. They told me to bring her to the hospital asap and not to feed her in case they had to sedate her. I knew that a shunt revision was coming - two weeks after the original surgery. Not a good thing. Carleigh is not the best candidate in the world for anesthesia, and having it two times in two weeks was not going to be fun!

We arrived at St. Louis Children's at about 3:00 p.m. Carleigh had to have a CT scan and x-rays. Dr. Park and Dr. Rivet decided that Carleigh's shunt needed to be moved to a different place because it was not draining effectively. Our fear of another surgery was topped off with the knowledge that Carleigh would now have to have another incision on her head. They decided to admit her to the hospital that night, but to wait until morning for the surgery. Friday morning we awoke to more swelling. Of course, that overwhelming urge to be sick had found me again.

We hoped for the same anesthesiologist as before, but it didn't happen. Surgery lasted about 1 1/2 hours. When Dr. Park came out he said Carleigh did "ok" and would be going to the PICU. (That was not the original plan.) He told us Carleigh needed to stay on the ventilator for awhile. We knew something was "up" since he had said she did "ok" and for the first surgery he said she did "good".

When the anesthesiologist came out, she told us what had happened. The combination of swelling and anesthesia made it impossible for Carleigh to breathe on her own.
Her airway was blocked. We accepted that shock fairly well and were happy to walk with her as they wheeled her to PICU.

Nothing ever could have prepared us to see Carleigh on a ventilator. Our sweet baby's face was covered with tape and tubes. It was almost too much to handle. We waited outside the PICU for them to get her "settled". We waited and waited. I called into the PICU two or three different times to see what was taking so long and never really got an answer. Once we were allowed in the PICU, we were told what had happened.

During transport from the recovery room, Carleigh's vent was somehow moved, loosened, or pulled out. When that happened, she not only lost the ability to breathe, but lost oxygen too. They had to sedate her, temporarily paralyze her, and reintubate her. During this time, Carleigh's heart decided to stop working! It was a mad rush to get the appropriate medication to get her going again.

My whole world collapsed then and there. We had never had any problems with her heart and I was afraid all the stress on her was starting to take its toll. I was thankful that there were doctors there who knew what they were doing, and also thankful that we were at St. Louis Children's where they wouldn't deny her the ventilator when she needed it.

The plan was to remove the vent on Saturday after they had weaned her down from 20 breaths per minute. They turned the machine off to see what she would do. She did well for awhile, but then got mad and held her breath. Unacceptable. The vent was turned back on and we waited until Carleigh was ready. On Sunday at around noon, with MANY people present (including Mommy and Daddy!), the ventilator was removed with success!!

Carleigh spent Sunday night in the PICU for observation and on Monday at around 4 p.m. was moved to 12 W. We came home today, with our little fighter and her new shunt. Everything is going well and Carleigh hasn't had any more episodes with her heart.

Things felt different this time. We rushed off to the hospital without me knowing in advance. It felt different knowing that all of Carleigh's faithful Internet friends wouldn't be sending special surgery prayers in with her. I am thankful that all of your usual prayers were enough to help her through. We appreciate all of you so much!!

We went to the neurosurgeon today to have Carleigh's shunt checked. I had been concerned because there was some puffiness around her shunt tube. The neurosurgeon
looked at it and said some puffiness was normal a couple weeks after surgery. His concern is that Carleigh's soft spot is not as sunken as he thinks it should be. We are supposed to sit Carleigh up as much as possible for the next two weeks to see if we can get rid of the puffiness. We go back to the neurosurgeon then. If her soft spot is not sunken more, she will probably have to have a shunt revision. That means another surgery - not something her Daddy and I are looking forward to! Also, if the puffiness doesn't get better, or gets worse than what it already is, we are supposed to go to St. Louis sooner.

The only good thing about this trip is that Carleigh weighed 8 lbs. 6 ozs. I celebrate that with mixed emotion. I feel that part of her weight gain is from fluid collecting because the shunt isn't working. Of course, right now I am paraniod, scared of another surgery - so I am hoping that the weight gain is all weight and not fluid.

At least I don't have to worry about her getting a feeding tube now. The pediatrician was going to consider it if Carleigh hasn't made a weight gain by this Friday. It seems like right now we have one accomplishment, and then we step a little backward with something else.

One thing never changes though, and that's our love for Carleigh. No matter if she is being our perfect little girl, "Princess Grouch", or "Grumbalina", we love her more and more each and every day!

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)

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.

Today's weight check brought us more good news. Carleigh is no longer a "six pounder"!! She has climbed up into the "sevens". 7 lbs. 11 ozs. to be exact!! We are so excited! 13 ozs. in 14 days!!

Our pediatrician wants us to increase Carleigh's feedings up to 65-70 ccs. This is going to be a challenge, because even though we were supposed to increase to 60 ccs. this past two weeks, Carleigh has really been liking 50, so we didn't push her. The pediatrician did not like that at all because she said Carleigh will not be able to maintain her weight at only 50 ccs. She said that if Carleigh will not drink what she is supposed to, we WILL get it down her. (feeding tube!) So now we have to push. We have come so far and I'm not going to let Miss Carleigh go in reverse!! I did get her to drink 60 ccs. tonight, but she drank half of it at 6 and the other half at 7. I think we may try feeding her less amounts more times and see how that works. As long as I can get her to gain 13-14 ozs. between each visit, we'll be doing well, no matter how much she drinks! I want her to gain weight and I don't want to stress her little heart. Drinking from that bottle is hard work! Determined Mommy and Determined Carleigh will find a way - without a feeding tube!!

The visit with the cardiologist at St. Louis Children's went well. We didn't see Dr. Grady, but two women cardiologists. Unfortunately I don't remember either of their names! Anyway, they said they see no reason why Carleigh cannot have the shunt surgery. It is scheduled for Thursday, January 27.

We now know all of the concerns with Carleigh's heart. We were afraid they would try to put a life expectancy on her, which they didn't. We were very pleased
with them, especially when they referred to Carleigh's heart as "different". They never said she was "defective" or even had "problems". We liked their use of
words because we believe Carleigh is a normal child, she just has things that are different from other children.

Carleigh's heart is very complex. Trisomy 18 has caused the complexity. She has four things that make her heart different from other people's.

These are the differences, with my best attempt to describe them.

A Ventricular Septal Defect (VSD) is a hole between the two lower chambers of Carleigh's heart. The low oxygen blood in the right ventricle is allowed to mix with the high oxygen blood in her left ventricle. Because of this, you can hear a heart murmur. The Ventricular Septal Defect is a common problem with Trisomy 18 children.

An Atrioventricular Septal Defect is a hole in the top part of Carleigh's heart. There are several types of ASD defects. We do not know exactly what extent her ASD problem is, but fortunately it is not a "complete" ASD! We do know that she will have to have penicillin prior to dental work or surgery on the mouth, bowel, or bladder. Penicillin will prevent the uncommon, but possible, occurrence of bacterial infection forming on the heart lining near the defect or valves. The Atrioventricular Septal Defect is also a common problem with Trisomy 18 children.

Pulmonary Stenosis is the narrowing of the pulmonary valve. This narrowing keeps Carleigh's right ventricle from pumping as much blood through the valve to the pulmonary artery. Currently this stenosis is helping Carleigh's heart, because it is preventing the extra blood from the VSD from being pumped through the artery. As Carleigh gets older, Pulmonary Stenosis will become more narrow. We may notice she is turning blue while she is eating or crying. The Pulmonary Stenosis can be reopened with surgery.

A Bicuspid Aortic Valve means that Carleigh's Aortic Valve is shaped differently. It should be shaped like a "peace sign" where there are three openings. Instead, Carleigh's is shaped more like a "fish", with only two openings.

With these heart concerns, we know that Carleigh will never be a basketball or track star. That does not bother us in the least! We are very happy and feel very blessed to have such a special Angel in our lives!

We go to the pediatrician in two days. I'll be back then to reveal the next big (hopefully big!) weight gain! :o)

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.