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Thursday, November 27, 2008 7:40 PM CST
Dear Carly,
We are thankful today that you were an amazing part of our life for 2 years, 9 months & 18 days.
We will always LOVE YOU and missing you just as much today as the day we said goodbye.
Loves, Hugs, Kisses & Smiles,
Mommy, Daddy & Carter
Monday, July 21, 2008: Four years ago today was the day that changed our lives for ever & for the better!!
Dear Miss,
HAPPY 4th BIRTHDAY SWEET GIRL!!
If ever there is tomorrow when we're not together.. there is something you must always remember. you are braver than you believe, stronger than you seem, and smarter than you think. but the most important thing is, even if we're apart.. i'll always be with you."
Winnie the Pooh
Wow, you would have been four years old and I'm sure doing so many great things and making us so proud. I see you in your pals...Ella, Josie, Emily, Ava, and Katelyn. I look at their picture on your bench everyday. They make me laugh and smile and when I can steal a hug I sometimes close my eyes as if I was hugging you. There are days, my angel, that it still does not seem real...you are not gone, just around the corner for a little while. So many days I supress the sadness way down deep as the pain is too hard to even start to untangle. Other days I'm at peace knowing that you are not struggling, not in pain and in a much more beautiful place. But then, I think about how you & Carter would have been quite the pals and getting into so much trouble...who would have been leading who? I feel it is so unfair and feel the hole in my heart only get bigger. When I ask him now, "Where's Carly?" he turns to look at your picture and tries to say your name. I see you in him in several little things that he does, like when he moves his body or arms a certain way as he plays, the way he drinks and some of the funny noises he makes.
Yes....I saw you twice today fluttering through the air
as we drove to your bench & plaque to have a picnic with you. I got goosebumps...cause you see, I told Carter this morning "I bet we see a butterfly today", wishing to myself that would happen. What beautiful wings you have and you have a spring in your flight.
Hope you got the FOUR ballons we sent to you and the blue one was Carter's, oops....we accidentally let it go too! Now you have five! HA! We put a butterfly and flowers on your plaque. Your brother was more interested in throwing rocks, eating sticks and being Mr. Independent trying to push your wagon down the hill. But he did place the rock on your plaque for you. Hope you like it!
We ate some of your birthday cake and gave a piece to Ella. She will celebrate you also by eating a piece tomorrow. We worked in your butterfly garden, sprucing it up and picking weeds, can't wait for you to come visit!!
Let me just blow you a kiss for listening to our prayers and having the upper hand on the weather while holding the 1st Annual Carly May Classic for your living memorial. What a day!!! We raised nearly $15,000. You have touched so many lives and will continue to touch so many more as your spirit lives on.
WE LOVE YOU & MISS YOU BEYOND WORDS. HOPE YOU FEEL US CELEBRATING YOU ON THIS DAY YOU WERE BORN!!
Loves, Hugs, Kisses & Smiles,
Mommy, Daddy & Carter
They say that time heals all wounds but all it's done so far is give me more time to think about how much I miss you. ~Ezbeth Wilder
Please see the link below if you want to know more about the Carly May Foundation and upcoming events and/or how to donate!
PS: Sorry about the LARGE size of the new photos, I will have dada work on that soon!
Sunday, May 18, 2008 2:15 AM CDT
"A butterfly lights beside us, like a sunbeam...
and for a brief moment its glory and beauty belong to this world....but then it flies on again, and although we wish it could have stayed, we are so thankful to have seen it at all."
Missing you like crazy & loving you forever Carly May...
Mommy, Daddy & Carter
I updated all the photos..... second page are pictures of Carly's memorial plaque & bench at Como Park.
I am at a loss for words....will write more later!
Thanks for remembering our girl!!
Thursday, February 21, 2008 10:42 PM CST
The Carly May Foundation has been created. The web address is: www.carlymayfoundation.org
You can read more about this living memorial to our girl and find information about the upcoming 1st Annual Carly May Classic Golf Tournament we are hosting May 31st.
Dear Carly,
One year ago today.........
We started on a journey
then watched you slip away.
Little did we know
what the outcome would be
this time, my angel, it wouldn't be routine.
The last time we saw you
monkey & elmo by your side
You were so very sick
but your smile still so wide.
We wish it could have been different
as we felt so helpless inside
that we could not protect you
just take you home & hide.
But GOD had a plan
for nobody could see
as we hoped and prayed
that you wouldn't slip away.
Mommy, Dadddy & Carter MISS YOU SO MUCH! We Love You and are so very sorry for what you endured!
Tuesday, January 8, 2008 9:37 AM CST
TO MOMMY and DADDY
Sorry I didn't get to stay
To laugh and sing and run and play
To be there always next to you
I'm sorry that I had to go
God sent me down to be with you
To make your loving hearts anew
To help you both look up and see
Both God and little me
God didn't take me 'cause He's mad
He didn't send me to make you sad
But to give your hearts a chance to know
How precious and strong a love could grow
Up here no trouble do I see
And the pretty angels sing to me
The streets of gold are where I play
You'll come here too, Mommy and Daddy, someday
Until the day you join me here
Keep me in your hearts so near
And remember.....each breeze you feel and see
Brings love and kisses just from me!
Love, Carly
(this was given to us along with a
beautiful picture in a frame by our
friend Pam Persak)
SAVE THE DATE:
To honor and remember our girl we are having the 1st Annual Carly May Classic Golf Tournament on Saturday May 31st 2008. Look for more information and an additional website soon!!!!
Love, Maria, Jaime & Carter
Saturday, December 15, 2007 4:30 AM CST
Christmas In Heaven
We've shared our hearts, full of Holiday Cheer
and shopped for presents for loved ones this year
The house is dressed up with garland and lights
That sparkle and shine through the Holiday nights
But even with all of this Holiday bliss
There's someone we lost that we terribly miss
And as this Christmas Day draws near
We wish with all our hearts she was here.
She's living her life way up past the stars
Somewhere past Jupiter, Saturn and Mars
She's spending her Christmas in Heaven, you see
And last night as I slept, a dream came to me
She was standing before me, happy and well
She said to me "I have something to tell...
Heaven's more wonderous than you would believe
It's the greatest of gifts I could ever receive.
I'd like for you all to remember good...
You know that I'd be there if I could.
So don't feel so bad that I'm not there
There are so many memories you can share
As you gather together, I'm sure you'll find
The gifts deep within you that I left behind.
Each one is unique and wrapped brightly in love
They shine from your hearts as I shine from above."
Borrowed from Kris Smith
WE LOVE YOU CARLY GIRL!!!!
Sunday, November 18, 2007 11:02 PM CST
Dear Carly Girl....
Six months has gone by......
Six months seems like yesterday but yet it seems like an eternity!
Six months ago it started to be different....without you!
Six months has gone by...... and sometimes there still are no words....
just tears......
or stories and smiles when we think of your funny ways....
some days....it feels like you are right around the corner and other days so far out of reach!
some days....we can feel you and other days not but we know you are always close protecting us and guiding us.
WE LOVE YOU and YOU MAKE US SO PROUD!
Every day we look at your picture and talk to you with Carter. One day he will know what a special sister he will ALWAYS have and what a beautiful angel you were and are!
LOVES, HUGS, KISSES & SMILES (and six months closer to seeing you again),
Mommy, Daddy & Carter
Thursday, September 27, 2007 10:27 PM CDT
Dear Miss Carly,
We know you were looking down on us this amazing evening and with us in spirit as we gathered to honor you and reflect on what an amazing GIFT you were and will always be. You had part in making it a beautiful evening. The rain was falling as we were driving to the park for your memorial bench/plaque dedication. Then the rain stopped and the most beautiful rainbow appeared. This beautiful rainbow reminded us of your beauty ~ inside & out. Carly girl ~ We thank you, We love you, We miss you, We honor you and We will never ever forget you as you will forever have our hearts!!
LOVES, HUGS, KISSES & SMILES forever,
Mommy, Daddy & Carter
WHAT THE CATERPILLAR CALLS THE END OF THE WORLD, THE MASTER CALLS A BUTTERFLY. ~ Richard Bach
Wednesday, September 5, 2007 1:13 AM CDT
~~~~~~~~~~TIME CHANGE & MAP~~~~~~~~~~
Carly's bench dedication ceremony has changed times. It will begin at 6:30 pm not 7 pm as it will be getting dark earlier. Also, here is a link to look at a good map of Como:
www.stpaul.gov/maps/Parks/Como Regional Park.pdf
Again bench location is near the East Park Picnic Pavillion also known as the Midway Picnic Pavillion.
***************************************
SAVE THE DATE
One of the memorials that we have chosen for Carly is a memorial bench and plaque at Como Park by the East Park Picnic Pavillion. We chose this location as it is a special place....... Every year in October the Buddy Walk is held to raise money and awareness for Down Syndrome. The site of her bench is where thousands of people gather to begin and end the walk. This year Carly will be there in spirit watching over all of her friends and allowing tired feet to rest. We are having a special dedication ceremony prior to the Buddy Walk that will take place on Thursday, September 27th at 6:30 pm at her bench by the East Park Picnic Pavillion. Refreshments and goodies will be served!! We invite you all...as we pay tribute to our special little girl who made such a difference in so many lives. If you need further directions or more info you can e-mail me at the bottom of this page. HUGE HUGE Thank You's to so many of you that contributed towards this timeless memorial bench and the other memorials. More information to follow in the weeks ahead.
***************************************
Dear Friends & Family,
It is Buddy Walk time again! Buddy Walks will never be the same for us as Carly May is not here but her memory will live on as we walk on.......sharing stories about Carly, celebrating her life and celebrating her buddies with Down Syndrome. We will be gathering around Carly's bench before and after the walk.
Date: October 7th
Check In: Starts at 10:30
Walk: 12:00 noon
Lunch: 1:00
If anyone would like to join us you can contact me at my e-mail below or you can register at dsamn.org under Carly's team (Walkn' In Memory of Sweet Carly May). If you are unable to walk with us but would like to donate you can do so by clicking on the link below that I have set up at firstgiving.com. Thank you and hope to see you there.
Love,
Maria, Jaime, Carter & "angel" Carly
Oh, Little Butterfly,
Messenger of God,
When I see you in the sky
I cannot help but nod.
You bring me respite
From grief and despair
Every time I see you
Sailing through the air.
You renew my faith
In all God's wondrous plan,
And I know it's all in FAITH,
Not in what I understand.
by Kathryn Poland
Saturday, August 18, 2007 11:02 PM CDT
Dear Miss Carly May (our angel),
Three months ago at this time you were taking your last breaths as we were saying our goodbyes....allowing you to be free. We still find ourselves wanting to lie next to you, reaching for your porcelain face and soft curls. Your beauty so amazing. Your scent, I can still smell. The feeling, I can still feel. The pain, still so raw. My heart, still so broken. My love, still so unconditional. My missing you, still so great. You are so a part of me and that part is so missing. I miss your smile, your funny face and sounds. I miss the way you would look at me with those amazing eyes, your waddle as you would walk with me. I miss your kisses, your hugs, your love.
LOVES, HUGS, KISSES & SMILES,
Mommy, Daddy & Carter
Go now, my child, the time has come.
All tasks today are done.
There are others waiting there for you,
and songs yet to be sung.
Go quietly, go softly,
leave all pain and fear behind.
Today has left a part of you
in our hearts, our souls and minds.
I'll remember you, my dear one
as I lay down to sleep.
I'll remember that you made me smile,
although, it makes me weep.
As you go to face your future,
as you go to touch the sky...
Know that God makes all things possible...
Angels never die.
Go now, my child, the time has come.
All worldly tasks are done.
There are others waiting there for you,
and songs yet to be sung.
(This was given to us the day Carly went to heaven by a friend who cared for her while in the hospital.)
***********************************************************
SAVE THE DATE
One of the memorials that we have chosen for Carly is a memorial bench and plaque at Como Park by the East Park Picnic Pavillion. We chose this location as it is a special place....... Every year in October the Buddy Walk is held to raise money and awareness for Down Syndrome. The site of her bench is where thousands of people gather to begin and end the walk. This year Carly will be there in spirit watching over all of her friends and allowing tired feet to rest. We are having a special dedication ceremony prior to the Buddy Walk that will take place on Thursday, September 27th at 7 pm at her bench by the East Park Picnic Pavillion. Refreshments and goodies will be served!! We invite you all...as we pay tribute to our special little girl who made such a difference in so many lives. If you need further directions or more info you can e-mail me at the bottom of this page. HUGE HUGE Thank You's to so many of you that contributed towards this timeless memorial bench and the other memorials. More information to follow in the weeks ahead.
***********************************************************
Saturday, August 4, 2007 0:15 AM CDT
HELLO GOODBYE
Wheres the navigator of your destiny?
Where is the dealer of this hand?
Who can explain life and its brevity
cause there is nothing here that I can understand.
You and I have barely met
And I just dont want to let go of you yet
Carly, hello, goodbye
I will see you on the other side
Carly, sweet child of mine
I will see you on the other side
And so I hold your tiny hand in mine
For the hardest thing Ive ever had to face
Heaven calls for you before it calls for me
When you get there, save me a place
A place where I can share your smile
And I can hold you for more than just a while.
Dear Miss Carly,
77 days have passed and we still find ourselves looking for you....it just seems as though you are gone for a little while! But as we know...."The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart." - Helen Keller
LOVES, HUGS, KISSES & SMILES!!
MOMMY, DADDY & CARTER
Friday, July 20, 2007 10:59 PM CDT
A Birthday In Heaven
I heard you crying yesterday
And felt your heart-sent love
So I’m sending you this message
Now, from Heaven up above.
You’re wondering if I’ll celebrate
My birthday (way up here)
I know you’re missing me today
I feel your essence near.
God planned a special day for me
He told me with a wink
He’d ordered me a special cake
(It’s Angel food, I think)
I’m getting lots of hugs from God
He’s really good at that
And every time that I walk by
He gives my head a pat
Balloons will fill the streets for me
They float up through the clouds
And we have lots of clowns up here
That make us laugh out loud
There is a birthday carousel
Jeweled horses ride the wind
With music playing oh so sweet…
The magic never ends
I’ve made so many friends, you see
We laugh and play and sing
We ride our bikes and play jump rope
And sleep in Angel’s wings
We’ll have our cake and ice cream
And open gifts, surprise!
But we don’t blow out our candles here
Instead, they light the skies
© 2005 Written by Kris Smith
Dear Miss Carly,
We had a wonderful celebration for your birthday today with all your Montana friends & family who love you so so much. We released all those balloons to you!!! Hope you like them! On your third birthday we miss you more than ever and will be having more cake and presents to celebrate your beauty, the lessons you have taught us and your infectious spirit!!!
WE LOVE YOU AND MISS YOU BEYOND WORDS!!
Keep dancing and enjoy your day up in heaven!
LOVES, HUGS, KISSES & SMILES,
Mommy, Daddy, and Carter
Monday, July 2, 2007 6:37 AM CDT
****** UPDATE ******
Carly is finally coming home to Montana......We invite our Montana family & friends to join us in a celebration of Carly's life & third birthday on Friday, July 20th from 5pm - 8pm. This will take place under Denny's restaurant, adjacent to the Holiday Inn Express in Butte. Dinner, birthday cake and refreshments will be provided. If you have any questions my e-mail is at the bottom of this page.
ODE TO CARLY
Dear Miss Carly,
When your mommy and daddy, and I decided I would help take care of you, when you left the NICU at age, 4 months, I had no idea of the gifts you would bring! I wanted to do it for your parents and for your Grandpa Dave, who couldn't be here to help.
I was so anxious the first time, about your oxygen and feeding tubes, we stayed in your room all day and I called your Mom every fifteen minutes. Without fail, for the next two years, your Mommy and Daddy each called twice to see how we were doing. On the days you weren't doing well, they would drop everything and come home to be with you.
We had some wonderful times, Carly girl....your sleepy hugs when you were getting up in the morning, deciding what you would wear (So hard to choose from the stylin' wardrobe) and time set aside for the "hairstyle of the day". Your hair grew long and curly, so we would experiment with ponytails, braids, barrettes, and binders. You were VERY patient! I loved how you would peer over your glasses like an old soul and how you would keep signing "book" to delay naptime. When I sat on the floor to read the paper, you would crawl over with a book and plop on my lap, as if to say,"Drop the paper, it's book time!"
You loved to crawl to the kitchen, empty the cupboards and try to climb into the dishwasher. Then you would crawl to the bathroom and try to take a bath and work on the toilet paper roll on your way out. Then it was to your parent's room where you loved to sit in front of the mirror and try on hats, like a truly girly girl.
How we marveled at each other's accomplishments: rolling over, sitting, crawling, and mastering the steps. You would clap, we would clap and I would feel so very proud of you! When Gramma Diane bought you the little cart, you would walk with it from one end of the house to the other. You loved your door swing too and would really move!
You helped fold the laundry while we watched the DVD's. I even loved you enough to watch, "The Wiggles", a supreme sacrifice on my part. You watched with such intensity and interest too. On nice days, we would take the stroller to the park and check out the swings and slides, and even climb a little. Then we would lie down on a blanket and with the breeze blowing through our hair, made me happy. You so enjoyed the many toys your parents bought for your development and you figured them out quickly.
Those close to us know about our mishaps.....Trying to fill a syringe with your prune juice, squirting it onto the ceiling and wiping the textured paint off trying to clean up before your parents came home; Bringing you to Como Zoo with 50 feet of tubing and getting it tangled in the stroller, while cars lined up three deep for our parking spot; The week we took turns pulling out your G-tube. Oh, how I miss it all! I would give my life if you could have stayed.....
Just before you were sick this last time, you were calling me, "Gee" and pointing to my photo. And when you were in the hospital, this last time, we talked. You were getting so very sick and were in the oxygen box. You would put your hand up on the inside and I put mine up on the outside and they would touch, and you would try to blow kisses.
You taught me about adversity, forgiveness, strength, courage, love, and what's most important in life. The stepping stone your parents made for you in my garden last summer is now being sheltered by two garden fairies and soon there will be beautiful flowers to remind me of YOUR beauty.
I will say good bye, Dear Carly, with a poem by Sara Teasdale.
"Into my heart's treasury, I slipped a coin.
That time cannot take, nor a thief purloins.
Oh better than the minting, of a gold crowned King.
Is safe kept memory, of a lovely thing."
Be at peace and dance with the angels, my darling.
Great Aunt Joy
5/23/07
Saturday, June 16, 2007 2:22 AM CDT
Hey Miss Carly Girl,
It has been four weeks since we held you close and kissed you good-bye. However, it has seemed like forever! What we would do to have you back! But knowing you are free continues to give us peace. We love you and think of you every second. Finding our way without you here has been oh so difficult! But you have lifted us up and made us strong to keep going! You are always with us!
LOVES, HUGS, KISSES & SMILES,
Mommy, Daddy & Baby Brother Carter
Heartache
Our little girl has left us
And now her spirit's free
Just like a little butterfly
She's flown away from me
Just where she's gone I do not know
But what she's left behind
I'll treasure 'til my final days
In archives in my mind
Her contribution touched the hearts
Of many whom she met
In a special unique way
A way they can't forget
Our dear Carly, who came to us
To teach us how to love
Has done her task so off she's gone
Back to her place above
I feel so sad that she has gone
But feel relieved as well
She's free from her helpless cocoon
As far as I can tell
I give my thanks for what she brought
I've grown a lot since then
And may this heartache slowly die
And let me live again.
(this poem was written by a mommy who lost her daughter Michelle with special needs)
Monday, June 4, 2007 6:55 PM CDT
There are not enough thank you's in the world to thank each and every one of you out there that has supported us, cried with us, laughed with us and shared a memory about Carly while we travel this painful journey. The generous gifts of all kinds, and beautiful words of peace, love and encouragement that have poured in will never be forgotten and help us heal and continue on. Some wonderful memorials are in the works to keep Carly's memory and spirit alive. Once things are finalized we will share them with you. Again thanks to so so so so many of you that have contributed to her memorials.
We would like to share the letter that we wrote to Carly that her daddy read at the service. But first for those of you who could not make it to the service it was quite beautiful......(and symbolic).
During the service especially when Pastor Anderson was giving his sermon about Carly (last journal entry) the most intense thunderstorm and downpour was occuring. It was as though the angels, including Carly, were hearing us and were shedding tears of joy. However, it all of a sudden stopped as Jaime began to read our letter and the sun peaked out as if she was closely listening........
After our letter was read to Carly we released a butterfly. A butterfly stands for "new life" and she is now living that WONDERFUL new life.
Dear Carly - Sweet Carly May,
The day you were born we were blessed with a special gift. We did not know our heart and soul were capable of loving that much. You were the center of our lives. Words cannot express the joy you brought to us everyday. We cherished every moment.
Carly, your glorious spirit, it was obvious to those you met. Oh, we think of all the hearts you touched every day you were alive. We think about what others tell us. That you were such a joy to be around. That smile and laughter you were blessed with, makes us so proud. You have made a difference in this world. You taught us so much about life and how to appreciate it even more. We thank you for that.
Little girls have other things to do. Not spend time in and out of hospitals. We only wish we could have taken the pain away from you. But you just took it all in. Never once did you complain. It made no difference what test they did…..you never once let them know the depth of your pain. We know that you are in heaven where you belong, a place free of pain and suffering. Now it is time for you to go play…….free of tubes, wires, appointments and needles.
Now, we want you to always be remembered. For your life gave purpose to ours. We may move on with our life here on earth, but we’ll never leave your memory behind. You have always inspired us with your strength & courage. And now, your strength is what keeps us going. Missing you and sharing your life is what will help us survive. One day we will play again, until then, you will always be with us, guiding us and inspiring us to be the best parents to your little brother. We will not let you down.
It is hard to say, but it is true, as much as we loved you, God loved you more. We long for the day we are back together, so we can hold you close forever.
All of our Love,
Mommy, Daddy & Carter
Monday, May 28, 2007 10:36 PM CDT
On this Memorial Day....Carly, we are thinking of you and missing you and loving you every second of the day more than words can ever say....at times it feels as though you are not really gone....
The following is Carly's beautiful sermon that was written by Pastor Anderson.
Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.
– Hebrews 13:2
Carly May Harris is pictured on the front cover of your program. Happy, smiling, loving life, surrounded by symbols of vibrant life – blooms and butterflies. She is pictured with angel’s wings – a reminder that she has become like the angels. No, she hasn’t become an angel. Humans don’t become angels, nor do angels become human. But she is like the angels; she is with the angels now. God sent his angels last Friday and they carried her home, to the Father’s presence in his heavenly mansion. There, God says in the scriptures, “There will be no more death or mourning or crying or pain, for the old order of things has passed away.” For “God wipes away every tear from every eye.”
Carly has not really become an angel. She is a precious little soul now safe in the Father’s arms in heaven. But it was during her life here on earth that she was an angel. You see, in the Bible the word angel means messenger. An angel may be one of those special messengers sent from heaven by God, or the angel may refer to a human messenger delivering the Word of God to his fellow man. If you think about it, that’s what angels mostly do. The angels at Jesus’ open tomb proclaimed the fact of His resurrection. Carly was an angel – a messenger from God, in her life.
Make sure you take time to study Carly’s picture board displays in the church hall. If you saw the display, perhaps you noticed the saying on one of them, “What a person IS speaks more eloquently than anything he can say.” Study those photos closely. You’ll see a little girl, seriously ill, but always smiling, always happy, still loving life. Jaime told me that in the hospital, when Carly would get stuck with a needle – something that was required all too often – she would smile and clap her hands when the nurse was finished. Can you imagine? Imagine having such strength, such courage, such an indomitable spirit, such a love of life. Not even pain and suffering could conquer that little girl. She conquered it. Can you say the same? Carly was a living sermon……one that was preached for 2 years, 9 months, and 18 days. Did you hear? Did you get the message?
1. First Message. What was Carly’s message? First, that we do not and cannot understand why things happen. I can’t tell you why Carly was sick all her life, or why God allowed such a thing, or why a beautiful little child should only live 2 years, 9 months and 18 days. God knows, but we are not capable of understanding such things. In the prophet Isiah God says, “as the heavens are high above the earth, so are my ways higher than your ways, and my thoughts higher than your thoughts.” And the apostle Paul wrote to the Romans, “Who has known the mind of the Lord? Or who has been his counselor?” Carly didn’t understand it, and none of us understands why. Why Carly? Why only 2 years, 9 months, 18 days? Why the sickness and pain? But Carly’s message is this: Not understanding did not stop her from living life. It didn’t stop her from smiling and laughing and rejoicing that she was alive. She didn’t become bitter or cynical or angry or despondent. What about you?
2. Second Message. Carly would never be what some of you will be. She would never be able to do some things your children can do. The world would look at a little girl like Carly and feel only pity. But those of you who knew her would never think that way, would you? No, because God gave Carly gifts that none of us will have, and accomplished things that you and I will never accomplish. Could you endure what she endured, and still smile, and laugh, and celebrate? Her unspoken message was this: Don’t look at others and pity them because they are not like you. Be careful when you imagine that someone like Carly must feel miserable and unhappy and unfulfilled. You’re wrong. God gives different gifts to each one as He chooses. Live your life, not another. Be yourself, not someone else. Choose to be happy and excel at what you do, with the gifts that God has given you.
3. Third Message. What was the message of this little angel? LOVE. Maria. Jaime. I imagine you didn’t know it was possible to love someone so much until Carly came into your life. You learned the height and breadth and depth of love. You learned that true love inspires sacrifice – there was nothing you wouldn’t do for that little girl. She taught you that. She taught you all that. And God sent her to teach us all that. God wants us to understand His love for us.
“For God so loved the world that He gave His only begotten Son That whoever would believe in Him should not perish but have everlasting life.”
Yes, God knows what it’s like to lose a beloved child. God lost His son. His only son, Jesus Christ. God lost his son not to some disease, as if he was helpless to stop it or cure it. He voluntarily gave up His son. He sent His son to be a sacrifice for us. He sacrificed His son Jesus Christ on a cross in order to redeem mankind from sin and everlasting condemnation. And like Carly, Jesus wasn’t bitter about it, or cynical or angry. He endured the suffering of the cross for the joy set before him – the joy of knowing that his life and his death would redeem all of us and open the door of heaven to all of us.
Jesus overcame suffering and death and now he reigns exalted in heaven. Carly endured suffering and pain than few of us will ever come close to. She conquered it, and now she laughs and rejoices with Christ and his angels. Yes, whether you recognized it or not, you were entertaining a little angel for the last three years. God’s messenger sent to be a powerful message.
We were all born into a sinful, fallen world. All of us, including Carly, were born into a fallen, damaged human race. The world and everything in it will one day pass away. You and I will one day pass away. And because we live in a sinful, fallen world, we suffer many things. The hardships of the world, if you let them, can suck the life out of you, and make you cynical and bitter and angry and cold. Only Jesus brings hope to a dying world. In Christ we have the promise of eternity, of life, of joy, and bliss. Christ was in that little girl, Carly May Harris. God was behind that smile. God sent that little angel as an unspoken message. A 2 year, 9 month, 18 day long living sermon to you. Take the message home. Take it to heart. Do not be conquered. Conquer. Do not be overcome. Overcome. Become a messenger yourself – a true angel. When the needle sticks you, go ahead and cry for just a moment. But then clap your hands, and smile, and thank God for giving you life, and know that better things are just around the corner.
Amen.
Saturday, May 19, 2007 3:17 AM CDT
Carly,
God saw you getting tired
And the cure was not to be.
So He put His arms around you
And whispered, "Come to Me."
With tearful eyes we watched you
And saw you pass away.
Although we loved you dearly
We could not make you stay.
That gold heart stopped beating
Hard working hands at rest,
God broke our hearts to prove to us
He only takes the best!
Quite some time ago Miss Carly earned her angel wings but last night she learned how to fly!!!!
What a joyous & beautiful but very painful day. Our Carly, our angel is in heaven after meeting her new baby brother and saying goodbye to many people that love her dearly. No more suffering, no more pain. We are in total awe of her passing......oh so peaceful and without a fight. We all laid there together mommy on one side and daddy on the other. Her little body was so very tired and needing to finally rest. We guided her, kissed her, loved her, held her hand and told her how strong and brave she is. Our hearts and souls ache so much, the pain we cannot bear. But you my daughter have made us strong and that strength will help us continue on.
We know you are dancing in heaven!!
LOVES, HUGS, KISSES & SMILES,
Mommy, Daddy & Carter
Harris Residence:
7256 170th Street West
Rosemount, MN 55068
Thursday, May 17, 2007 11:53 AM CDT
Dear family & friends,
Please pray for our baby. Over the last few weeks this stroke has taken quite a toll on Carly's little body. She is in constant motion and has no control of her movements unless she is sleeping. She has much difficulty falling asleep and at best only sleeps a few hours in a twenty-four hour period. She seems unaware of her environment and has no purposeful gaze. She also now has developed an infection at her trach site and lungs have become more wet & junky. She is requiring more oxygen at this time. Yesterday we asked the doctors to make her more comfortable by putting her on a continous drip to sedate her, help her rest and stop the constant movements. What more can I say at this time other than....please keep her close to your heart!! She can feel it!!
Loves, Hugs, Kisses & Smiles,
Carly, Carter, Maria & Jaime
God's Loan
"I'll lend to you for a little time,
A child of mine," He said,
"For you to love the while she lives
And mourn for when she's dead."
"It may be six or seven years
Or twenty-two or three,
But will you till I call her back,
Take care of her for me?"
"She'll bring her charms to gladden you
And should her stay be brief,
You'll have these precious memories
As solace for your grief."
"I cannot promise she will stay
Since all from earth return.
But there are lessons taught down there
I want this child to learn."
"I've looked this world over,
In my search for teachers true.
In the crowds that throng life's land,
I have selected you."
"Now will you give her all your love
Not think the labour vain,
Nor hate me when I come to call
To take her back again?"
It seems to me I heard them say,
"Dear Lord, thy will be done.
For all the joys a child shall bring,
The risk of grief we'll run."
"We'll shelter her with tenderness,
We'll love her while we may,
And for the happiness we've known
Forever grateful stay."
"And should the angels call for her
Much sooner than we've planned,
We'll brave the bitter grief that comes
And try to understand."
Thursday, May 3, 2007 8:01 PM CDT
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Family & Friends:
Sorry for the wait in an update but this past week has been a very busy and emotional one. After our last update we brought our cute little man home on Thursday. He has been a rock star...eats, poops and sleeps and eats and eats some more!!! He is such a good baby and truly a wonderful blessing to us at a time like this. It has been a difficult adjustment as now we are not able to spend all of our waking hours at the hospital with Miss Carly. We are looking forward to the day she can come home & they can finally meet. We opted to not bring him to the hospital because the risk is too great in getting hime sick with something.
On Wednesday of last week we were given some news that has been the hardest to take. We are still in shock and have a hard time putting our arms around this one as Carly has fought so hard to make it through everything and now this......The MRI of her brain showed that Carly had suffered a stroke aproximately 10 days earlier. The stroke was most likely caused from one of the incidents
when she dropped her blood pressure to a dangerous level resulting in hypoxia (lack of oxygen) to the brain. The areas affected are the basal ganglia & cerebral peduncles.
What does this mean for Carly?? The neurologists are now seeing Carly and we spoke with him in length this week about her prognosis and her function. He expressed concern about her vision. Currently her eyes remain dilated and sluggish and not really responsive to bright light. If Carly is stable next week she will be transported to the opthamology clinic here in the hospital to be evaluated more thoroughly and her visual fields will be looked at. The other part that the neurologist expressed concern about was her motor function. Right now she is not moving her legs much and has a rythmic, constant motion with her arms when she is awake. She has what they call a movement disorder with her upper extremities. The doctor felt this was moderate in severity but the spectrum for recovery is so very broad he is unable to give us any idea. He said she could make a full recovery from this to no recovery at all. Only time will tell, so we sit & wait and again feel so very helpless. A repeat MRI will take place in the next few weeks to look at the brain again to see if perhaps the damaged area has stayed the same size, grown or actually shrunk. All the doctors agree that it is still too early to tell how much of what we are seeing at bedside is the stroke. Her picture continues to be very multi-layered.....laying there for ten weeks, Carly is very debilitated and weak and it will be another two months aprox. before all the nasty medicine is out of carly's system. Tomorrow she will finally be finished with her methadone & Ativan wean. She continues to get a small dose of Chloral Hydrate at night to help her sleep. So delirium is still playing a part. A good baseline neurological assessment will not take place for a while.
On a good note, blood pressures have been very stable and physical & occuaptional therapy are sitting carly up everyday. Today speech therapy was in & Carly enjoyed some chocolate pudding & thickened cranberry juice. The next 24 hours she will be monitored for any signs of aspiration in her trach tube. Hopefully she will continue to like this & take more & more by mouth. The other good thing is that now Carly has only one IV running and this is her diuretic which she now gets intermittently...every six hours instead of constant. Hoping to hold her in the next few days for the first time!!!
Well, I better get going Carly just woke up from a nap and our time now a days is somewhat limited. Please continue to pray for our little girl as this stroke thing has got to have a good outcome...we keep believing, hoping & praying!!
LOVES, HUGS, KISSES & SMILES,
Carly, Carter, Maria & Jaime
Sunday, April 22, 2007 4:59 PM CDT
Hi Ya!
Today is day 56 of being on the ventilator and day 60 since being admitted to the hospital. WOW! We have met some amazing parents here on the ICU. There is one family here from Michigan who has been here almost 11 months. We can't imagine! Although this sucks, at least we can sleep in our own bed at night and be familiar with our surroundings. We feel very fortunate in that sense! The ICU/hospital life becomes very surreal. At times it feels like you are stepping in/out of a different life.
This week has continued to bring about many ups & downs. Carly continues to keep things interesting to say the least. The Rotavirus continues to rear its ugly head and watery yucky stools continue, maybe slightly improved. Hoping we are nearing the end very soon!!!! Carly has been very lethargic because of the dehydration and just being so sick. Keeping a fluid balance has been very tricky. She has been on & off her good nutritional g-tube feeds several times throughout the week for many reasons. When off feeds then she receives IV fluids to keep her hydrated. Carly has also received a couple more blood transfusions and platelets. Because of the fluid changes, the diuretic(vitamin pee)game changes frequently. Electrolytes (potassium, sodium, etc..)continue to be replaced very often. We are always playing catch up with something.
I had my first trach change on Wednesday. This will be done once a week and mom & dad will eventually learn how to do along with suctioning and all the fun stuff that comes with it. However, the stoma or hole that was cut in my throat where the trach goes is larger than they would have liked. Part of the trach tube has rubbed on the edge. Dr. Rimmell (ENT) said it will seal and get smaller with time and poor nutrition has not helped the healing process. So now I have a special dressing (duoderm)on it to help protect it.
SSHHH....don't tell anybody but I am down to one IV pole again as of today. Also, the venous line in my left leg was pulled last night because my leg was very puffy & cold. The arterial line in that leg has stayed in to monitor my blood pressures. I continue to need this line as they draw blood out of it to watch my blood gases, labs and monitor my blood pressure. However, this line has become very positional and tempremental. Not sure how much longer it will last but I do not want to get poked again. The two ports in my chest continue to be used for a variety of medicines.
The biggest challenge that I have faced during the week is that I continue to have these crashes where my blood pressure and occasionally my heart rate drops to unsafe levels. Yesterday was another scary crisis requiring several drugs to maintain stability. The doctors are stumped as to the cause of these.....most of their theory's have been been put to the test & failed. I would rattle all of them off but I could be here awhile boring you all. If they ever figure it out I will fill ya in. Cardiology has been consutlted again because I am having some intermittent heart rythms that are not right along with these dips in heart rate. Have not heard the final word from them.
****If you are reading this....I will finish soon. I am being called...gotta go see whats up now??!! I have more news to report! HA! Thanks Maria
********Continued update***********
Tuesday 4/24: Well now since Sunday I have been behaving myself. BP's & heart rate have stabilized. No need
for any meds to keep things stabilized. I have yet again decided to do things a little different, the CARLY WAY. I have begun to breathe over the ventilator, Taking BIG breaths in and long exhales. This is great as my lung compiance has improved. I am currrently on a vent setting more like a C-pap that gives pressure but no rate needed. Needing a little more oxygen but I am showing a much needed improvement.
Tomorrow I am having a CT scan of my whole body again and an MRI of my brain. We want to rule out any neurological problems that may have happened. Carlys behavior & mental status is likely related to continued withdrawl symptoms but she has seemed more "spacey" and not tracking or focusing well. (although this was better today). One of the docs compared it to withdrawls that a heroin addict goes through. Delirium and all the other nasty stuff that goes with it...tremors, gagging, lots of yawning, dilated eyes. Our Carly just does not seem like she's in there. But we continue to hope & pray and feel confident that we will get our girl back and this is just a slow, lengthy and painful process to witness.
^^^^^^I have some WONDERFUL NEWS to report.... I have a new baby brother named Carter David. He was born yesterday the 23rd at 8:45 in the am. He weighed in at 6 pounds 7 ounces and 18.75 inches long. I have not met him in peron but they say he looks like mommy. Lots of blondish-brown hair and very handsome little man. Look in photos for a picture. Looking forward to meeting him soon and getting along with this sibling playn' thing. I have a thing or two to teach him about life.
So as we update this my mommy, daddy and Carter are on the Riverside campus hanging out and I am here on the University campus. Child-family life services haave been JUST AWESOME in keeping us connected by a two way camera & microphone in each of our rooms. I can hear & see them and they can see and hear me! It is very cool.
Who would of thought that our family is in the position we are today but all the WONDERFUL people around us has made it easier and go very smooth. Thank you to everyone in the PEDS ICU, child family life, maternal-fetal medicine, Dr. Prosen and our dearest family & frinds who have helped so much. Especially Grammy Diane, Auntie Erin & Great Aunt Joy.
LOVES, HUGS, KISSES & SMILES,
Carly, Carter, Maria & Jaime
Monday, April 16, 2007 1:07 PM CDT
Hey All!
Well, I might have spoke too soon bragging about the fact that I had only one IV pole in my room now! Things have changed a bit over the weekend. I continued to struggle with agitation and restlessness and not being able to fall asleep except for very short periods of time on Saturday. This withdrawl thing started to take a toll on my little body. I had a consitent heart rate of 140 and continued to having a climbing fever (103 ). By late Saturday night my blood pressures started to drop to very unstable levels. Again, I was not peeing for several hours and my kidneys were not likin' life. So the docs filled me up with fluids and meds once again to get the BP stabilized. I got albumin, a blood transfusion, calcium, dopamine, epinephrine along with some other things. I was not needing any sedation to keep me quiet and calm by this point because my body had hit exhaustion by itself. Over the night the docs held my Methadone and Ativan doses so my blood pressures would not drop even more. I didn't even notice and that's not like me.
So, by Sunday morning my BP and kidneys started to stabilize. AND FINALLY....... maybe an answer to this fever and all the other things that have led to this most recent crash. My stool culture came back positive with Rotavirus. Yuck! Yep, all I can say is crap!!!!!! Unfortunately this virus is spread by contact. So that means somebody brought it in to me and it could have been preventable. So everyone now has to be even more diligent about washing their hands and wearing gloves. We completely sanitized my whole room and all my blankets and animals went for a thorough wash. Lots & Lots of watery stools and there is nothin that can be done except for fluids and let it run its course. My feeds were stopped again temporarily and replaced with IV fluids but this afternoon I am back to getting some real yum yums back in my tummy. Docs say this virus could take about a week to improve. UGGGHH! One more setback!!
The more severe withdrawl symptoms may continue for another 2 1/2 weeks but should improve with each day. I am still quite out of it and being sooo sick does not help things either.
I also had to have new arterial and venous lines put in my other groin because the original line wasn't working. I was having very diminished pulses in my right leg and my foot was cold compared to the left foot. This has improved the last 24 hours, so no Heparin needed to break up a once thought blood clot! Hopefully as this virus thing resolves I will be getting rid of some of the lines and back to one IV pole. HA! My lungs overall have handled all this extra fluid quite good and I am oxygenating well. Thank Goodness for that!
Well, we continue to ride this roller coaster adding another exciting chapter to our book. This Wednesday will mark eight weeks since we have been here and likely several more weeks to come. Words cannot explain how grateful & relieved we are despite these setbacks that our miracle Miss Carly has done her thing thus far. She is the ultimate fighter and has a will to survive.
We also just want to thank all of you again for continuing to check in on us and supporting us in so many ways. Your generosity has taken out breath away and we will never forget all of you! Thank you from the bottom of our hearts!
LOVES, HUGS, KISSES & SMILES,
Carly, Maria & Jaime
Friday, April 13, 2007 4:57 PM CDT
Hey All!
Today has been a pretty good day despite it being Friday the 13th. I am down to one IV pole with six pumps compared to the two IV poles and 12 pumps that I was once on. Each pump carries a different IV medicine(s) that goes into the ports in my chest or the arterial line that I still have in my right groin area. I continue to receive quite the pharmacy via my g-tube for various things but the last 20 hours has brought about some nice changes. I was started on scheduled methadone and ativan last night to help with withdrawl symptoms from Versed and Fentanyl. I have been slowly weened off both of these over the course of the day. My propofol drip has decreased from 100 to 30 and eventually will work towards being totally off. I can have morphine for pain but needed that only a couple times since last night. I continue to have a low-grade temp in which I receive alternating motrin & tylenol and I love the fan to blow on me!!!AAAHHH! Last night was difficult dealing with the withdrawl symptoms. I did have some problems with my blood pressure staying up so I was back on Dopamine to help with that. But, once again things are stable and off Dopamine today. Today has been better with the withdrawl symptoms. I have been awake and mostly calm but have periods of restlessness & agitation. One thing that I love that has calmed me is the pink, mint sponge that is dipped in water to suck on and clean out my mouth. It is like eating lobster tail and a t-bone steak. YUM! It feels so good on my tongue! I also enjoy watching my DVD's! I am still quite glossy-eyed and out of it but they seem familiar to me! The doctor told my mommy and daddy they probably won't see the real "CARLY" for another two months because the doses and length of time that I was on all those drugs. The drugs also have penetrated into the fatty tissue throughout my body and will continue to seep out over weeks & months.
I also had an echo of my heart yesterday and it indicated my pulmonary pressures are hanging around 40. This is slightly elevated but the increased dose of Viagra and Bosentan seems to be working fairly well. Also, my ventilator settings were able to be turned down just a notch and I am oxygenating pretty good.
Well, that is all for now! Things are fairly stable and each day only brings new hope and one step closer to getting home. I continue to amaze the people around me and am the bravest and strongest little girl!!
LOVES, HUGS, KISSES & SMILES,
Carly
Wednesday, April 11, 2007 4:14 PM CDT
Hi Again!
No more tubes in mouth.......YEAH! I smacked my lips together & made funny faces for the first time in too many weeks to count. I gave my mommy and daddy kisses and then wondered...what the heck do I have attached to my neck?? This will take some adjusting but I can handle it! I am on some increased pain meds but have been awake for most of the afternoon. I get a little ancy at times but for the most part handling things pretty well. Docs say my lungs sound pretty good after the procedure. The hole in my neck where the trach inserts will take about one week to form a bridge of scar tissue from the trachea to the skin so I will remain under watchful eye so I don't pull it out!
All in all things went great without any complications and my cute little face is free of any tubes for the first time in my life. Thank you to everyone for their continued support, prayers, love and friendships! It means the world to us!
Loves, Hugs, BIG Kisses & BIG Smiles,
Carly May
Tuesday, April 10, 2007 6:34 PM CDT
Hey All!
A quick update to let you all know I am on the OR schedule for tomorrow at 10 am for the tracheostomy. It was not supposed to happen until Friday or even next Monday but Dr. Rimell (ENT)had a cancellation for tomorrow. So, again things move quick around here and ya just better be ready for anything & everything. This trach thing is bittersweet cause I will be a happier camper with the tube out of my mouth and be more mobile and less sedated but yet the fact that I ultimately needed it in the end is somewhat disheartening. We will continue to hope & pray my lungs will heal over time & the trach becomes only temporary and eventually will come out.
Over the past few days I have continued to have a temp. Finally, staph infection has grown out in my urine and lung secretion cultures. So back on another antibiotic as of yesterday.
I continue to be awake for 3-6 hours at a time with sleep in between. I am tolerating being awake fairly well but have my moments when I get a little wild. I continue to fight the close my eyes & sleep thing until the bitter end. It seems when I feel myself getting more & more sleepy then I fight harder despite all the meds on board. Overall though they have a better handle on my sedation regimen.
Other exciting things that have happened: The swan catheter was pulled out of my leg that was near my heart monitoring my pulmonary hypertension. Things seemed to have stabilzed even coming off the Flolan (which was the continous inhalant med I had been on for about a week). Which is great! I now continue to take the Viagra and Bosentan for this in my G-tube!
Everyone comments that I look quite well and you would never know that I needed to be intubated but my lungs tell a different story....I will continue to require ventilator support via the trach. The next several weeks will consist of me getting used to this thing, my caregivers learning how to care for & change it. Also, weaning off sedation, pain meds, diuretics and getting rid of alot of tubes & lines is a whole seperate issue that I face.
For now, we pray that all goes well tomorrow without any complications. We will update tomorrow with all the happenins'.
LOVES, HUGS, KISSES & SMILES,
Carly, Maria & Jaime
Friday, April 6, 2007 1:12 PM CDT
Friends & Family,
Sorry for such the lapse in journaling. However, last week I could not organize my thoughts enough to relay all that has gone on. Here in the ICU things can change for the better and for the worse by the minute, by the hour, by the day or by the week and we have seen it all since I have last updated. Sorry if this ends up being very confusing but it is and Carly has become so non-textbook that she is teaching them a thing or two...or three....or four!
Since our last update two Sundays ago things became even more grim. Monday through Wednesday Carly's lungs were becoming worse and worse and her "lung compliance" was at a all time low. Our biggest fear was coming true in that the doctors told us Carly was now in the later stages of this ARDS (acute respiratory distress syndrome) which is usually the 4-6 week mark. At this point the inflammation in her lungs typically becomes fibrotic scar tissue which is non-reversible. She was requiring so much support that we were nearing maxed ventilator settings that could have potentially blew a hole in Carly's lung called a pneumothorax. This could have been REALLY BAD as the only thing they could have done for that is put a chest tube in and allow the extra air to leak out. The doctors also put Carly on a paralytic drug in addition to the sedation to keep her very quiet and prevent her from moving and fighting the vent. Carly continued to have many episodes of decreased heart rates and started to have weird rythms. Blood pressure was not stable which required several meds to help stabilize this. Her temperature was also on the rise more constantly but we continued to find no source of infection from all blood, urine and lung secretion cultures.
The bad days were starting to way out number the good or even the fair days. What was once a big deal two weeks ago was now looking pretty good given the big picture. We were grasping at things to make the picture look prettier when it really was not. During the course of those three days we put in place plans to not rececitate if Carly were to "code", meaning if her heart stopped or other organs failed. We also individually spoke with each of Carly's doctors about her prognosis. The consensus was that Carly was given aprox. a 20-40 percent chance of surviving this and if she did she would require a tracheotomy and long-term ventilator support at home for years until she grew new lung tissue and still there would be no guarantee. So, we continued to fight & wait along side our baby praying to GOD the very worst thing would not happen. It may sound pessimistic but we had to be realists at the same time because if something tragically happened then we needed to prepare ourselves somewhat. How does one do that? We struggled with that every minute and that's been the hardest thing we have done in our life! When do you decide that enough is enough and not let Carly suffer any more or continue to hold on to hope that each day would bring a more clearer answer. Only Carly & GOD would answer that for us. We were looking for guidance in what to do. The decision was SO difficult that it became clear to us that making any decisions for her were too premature and she still had it in her despite the picture. But just in case,Jaime's family flew in and we had Carly baptized on Thursday. We also had some plaster molds taken of us holding Carly's hands as a keepsake. They turned out beautiful!
On Thursday the team decided to schedule Carly for a swan heart catheter for Friday which would be inserted into Carly's groin area and be threaded up to her pulmonary arteries by her heart & lungs to help monitor her pulmonary hypertension. The drs. had a hunch that her pulmonary hypertension may have worsened because of her lung condition and this is why she was having erratic episodes with her blood pressure & heart rate. They also wanted to complete a CT scan of Carly's brain to make sure they were not missing something. So, we requested a full body CT scan since one was being done to cover all basis and not miss any possible sources of infection. They also decided to take off all other antibiotics except for the Caspofungin which was treating the bacterial fungal infection. Since the fungal infection was clearly improving and Carly still had a temp they wanted the infection to show its ugly head so they could finally know what they were up against, if anything! Another bronchoscopy was then scheduled for over the weekend to look at her lungs. At this point they were looking for infection vs. inflammation. If no infection appeared after 24 hours then the likely culprit was bad inflammation in the lungs. When one has inflammation in the body you can also get what is called SIRS (systematic inflammatory response syndrome). The overall picture was looking more like this including the tempurature. So now carly had a combination of SIRS & ARDS.
The results & treatment for the above tests came out like this:
**CT scan was normal THANK GOD! But getting the CT scan did not happen without an event and 20 minutes of complete panic. We ended up getting the CT scan done earlier as a result of a mistake made in the day. By accident, Carly was given eye dilation drops twice during the day as the nurse thought she was giving artificial tears to keep her eyes moist. When the next nurse came on shift and completed her assessment Carly's eyes were very dilated & not responsive. Being on the paralytic made the eyes even slower in returning to its normal state. This is usually a sign of a brain bleed or bad neurological signs. Finally, all was worked out it ended in good results.
**Friday night after getting the heart catheter in place Carly went into a "pulmonary hypertension crisis". What this means is that her pulmonary pressures were the same or just below her systemic blood pressure. THIS IS BAD! Basically her pulmonary artery was squeezing and constricting and needed to be relaxed so blood could get through. Since carly was already on the max dose of Viagra to help this they also started another medicine called Flolan which is like a nebulizer that she is continously inhaling. She was also put on 100 percent oxygen and nitric oxide. Over the next few days things started to improve (stable BP's & heart rate) and the nitric oxide was again taken off and oxygen was weaned to 60 percent. Currently she continues to be on the Flolan. Then two days ago Carly was started on another similar medicince for her pulmonary hypertension called Bosentan (which is given via G-tube) in hopes of slowly weaning her off the Flolan. This is because the Flolan is a tricky "pain in the butt" drug in that it can only be administered in two ways: continous inhaling or continous IV. But as the dose of the Bosentan goes up slowly the Flolan has to come down slowly and carly's pulmonary artery pressures will be closely monitored. Again, the balance act of one drug against the other is just a another thing to juggle in this maddening process.
** The results of the bronchoscopy showed no signs of infection and no more plaques of fungal infection. Instead LOTS of inflammation and redness. So Carly is now on her fourth day of steroids to treat this and this too will be tapered down over the next week. The question still remains how much of this inflammation will result in scared fibrotic tissue and/or how much fibrotic tissue is already in place? The only way to decipher this is to complete a lung biopsy and Carly is not a candidate for this. The mortality rate of doing this increases dramatically given the state she is in. So, once again all we have is time and prayer and hope that her lungs will continue to heal and grow new tissue!
SO......you ask how I am doing today! Well, miracles are starting to happen. As of Monday-Tuesday of this week my "lung compliance" has dramatically improved and my lungs are not as stiff and the ventilator settings are coming down slowly. Time, steroids, prayer, hope, being baptized or my will to survive this!!! Who knows what has made the difference this week but things are looking up once again. I AM BACK!! I am off the paralytic and on Tuesday I was not about to be sedated or sleep no longer! Six weeks has been enough for me! I woke up and saw my mommy and daddy, grammy diane and great aunt joy! My grammy Diane even got a smile out of me! I even watched some DVD's and batted at my Elmo balloon and waved hi and bye! I have my moments when I am awake and calm but other times I get agitated and try to jump out of my bed. Every now and then I crinkle my eyebrows and cry for about 30 seconds. Hearts sink when this happens. UGGHHH! My mommy says nothing is worse! If only she could pick me up & hold me and comfort me! I have to wear soft restraints around my wrists or else this tube would be out of my mouth in a split second. My main issue now a days..... I am a sedation nightmare! These past few days I have showed them once again who's in charge. Every sedation medicine that I have in my cocktail regimen (which is now at six different ones) would not put me to sleep! Some of these drugs I am on are adult doses of and still they couldn't keep a girl down. So, yesterday the docs started a new one and the dose can be increased as needed. Again, they want a balance! It is good for me to be awake and work on breathing over the ventilator but they want me calm & restful not flayling and fighting the restraints and tubes! Hopefully we will find that happy medium real soon. Today is better than yesterday and hoping tomorrow will be even better! We continue to take day by day and be cautiously optimistic but yet VERY hopeful that the outcome of this is what we prayed for! There is talk of placing a trach by the end of next week in order to get this tube out of my mouth. But I am the boss of this and I will determine that, so until next time I will keep fighting.........and wanting to be back where I belong! I have a ways to go before I can declare myself "out of the woods" but the trees are becoming less dense and I am starting to see more blue skies!
Happy Easter & God Bless!
LOVES, HUGS, KISSES & SMILES,
Miss Carly May, Maria & Jaime
Sunday, March 25, 2007 10:52 AM CDT
CHILD, YOU MUST WAIT
Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate,
And the Master so gently said, "Child, you must wait."
"Wait? You say, wait?!" my indignant reply.
"Lord, I need answers. I need to know why!
Is Your hand shortened? Or have You not heard?
By faith I have asked and I'm claiming Your Word.
My future and all to which I can relate
Hang in the balance, and You tell me to WAIT?
I'm needing a 'yes', a go-ahead sign,
Or even a 'no' to which I can resign.
Oh, Lord, I've been asking and this is my cry;
I'm weary of asking. I need a reply!"
Then quietly, softly, I learned of my fate
As my Master replied once again, "You must wait."
So I slumped in my chair defeated and taut
And grumbled to God, "So I'm waiting...for what?"
He seemed then, to kneel, and His eyes wept with mine,
And He tenderly said, 'I could give you a sign.
I could shake the heavens and darken the sun;
I could raise the dead and causes mountains to run.
All you seek, I could give, and pleased you will be;
You would have what you want, but you wouldn't know Me.
You would not know the depth of My love for each saint.
You would not know the power that I give to the faint.
You would not learn to see through the clouds of despair.
You would not learn to trust just by knowing I'm there.
You would not know the joy of resting in Me
When darkness and silence are all you can see.
You'd never experience that fullness of love
As the peace of My Spirit descends like a dove.
Sure, you'd known that I give and I save...(for a start),
But you would not know the depth of the beat of My heart.
The glow of My comfort late into the night,
The faith that I give when you walk without sight,
The depth that's beyond getting just what you asked
Of an infinite God Who makes what you have last...
You'd never know should your pain quickly flee,
What it means that 'My grace is sufficient for thee."
Yes, your dreams for yourself overnight would come true,
But, oh, the loss, if I lost what I'm doing in you!
So, be silent, My child, and in time you will see
That the greatest of gifts is to get to know Me.
And though often My answers seem terribly late,
My most precious reply is still, "Child, you must wait!"
Author unknown
******Today marks one month since Carly has been intubated. The last few days have been the darkest of them all. On Thursday we almost lost our angel. As you read the above poem we were looking for guidance and the answer as to what God's plans were for Carly. For now...she must wait....his plan that day was for her to continue fighting with her mommy and daddy.
I can not put into words how amazing & strong she is. The doctors had to bring in their "arsenal of goods" to turn things around. Carly went into septic shock. Basically that means that her blood stream became contaminated with bacteria and becomes leaky. Multi-organ failure can occur. Carly's blood pressure was plummeting and her kidneys were no longer getting the blood they required in order to pee. She was filled with so much fluid she seemed to be drowning. Also as a result her heart was beginning to be VERY stressed. Her lungs were filled with so much fluid that her heart was not able to keep up pumping the blood through her lungs and throughout the rest of her body. She was having episodes of very high heart rate that required different techniques to normalize this. At this point the dilemma bacame to we save the heart and lungs? or do we save the brain and kidneys? Ironically Carly required more fluid into her blood stream to increase her blood pressure to better profuse her brain and kidneys. At the same time she received several other emergency medications to increase her blood pressure, normalize heart rate and make her pee. Also, the ventilator settings were changed to assist Carly in breathing a different, more uncomfortable pattern. So to make her more comfortable they have been giving her a muscle paralytic as well as some sedation medications. Because of all the prayers God made a miracle happen later that day....Carly started to slowly stabilize. As of this morning she is now off ALL those emergency medications and they may change the ventilator back to the original settings in order to get off the paralytic. We are beginning to get back on track where we left off on Wednesday more quickly than expected. SO....Carly is peeing ALOT, blood pressures & heart rate good, no signs of brain insult and now just need to get back to healing lungs. However, she did start to spike a temp this morning. Tylenol was given and they will get more cultures from her urine, blood and lung secretions.
*** As a result of Thursdays events, on Friday Jaime & I had a "mini-care conference" with two of Carly's doctors to discuss a short term plan for getting out of this nightmare. May we never have to face this but this journey has forced us to talk about life & death decisions. For now, Carly has her own plan and has guided us thus far. She is making strides in the right direction. We do not know what tomorrow holds or even the next moment. Once the doctors feel she is less critical then we will be moving forward to put in a tracheotomy. This will allow her to still be ventilated or utilize a C-PAP for lung support. She then can be awake and not have a tube down her throat. This will prevent any further injury that she may have sustained to her airway and decrease the chance of getting any more bacterial/yeast infections that would only set us back more. However, getting to that point will be very rough too. Coming off all the sedation and pain medications that Carly has been on for the past month will be pain-stakingly hard to witness. Carly will most likely require Methadone and Ativan to help with withdrawl symptoms. She will not be happy and the doctor informed us she may thrash around in her crib and will not want to be comforted for several days before she starts to become less addicted. We will cross that bridge when we come to that! UGH! For now we are forever grateful that we have another day for improvements even though it has been one month since we have been able to hold and interact with our baby. It continues to be so very difficult to see her lying there needing the support she needs but also hoping, praying and wishing time is healing her!
Thanks again for all of your amazing support...Carly is feeling it!!!! Keep the faith & prayers!
LOVES, HUGS, KISSES & SMILES,
Miss Carly and her mommy & daddy too!
Saturday, March 17, 2007 4:14 AM CDT
Family & Friends,
DAY 25
We apologize for such the delay in an update. We find ourselves in a very different spot than one week ago. This week has been, once again, filled with ups and downs, steps forward and steps backwards. Day to day is filled with with so many details, questions, new DR. orders, new emotions, new specialists,good news & bad news that it is hard to keep it all straight at times. We will do our best in giving you the whole picture and not so many details, as this would overwhelm one even more if not present. At this time we ask for your strength and prayers in helping Carly guide her mommy and daddy and the doctors in knowing what path she wants to take and at what pace. Carly will remain intubated and in ICU for at least several more weeks. However, nobody can predict just how long. A friend asked me last week if Carly's situation is critical? At the time I said serious but not critical. That was likely true for that day. However, the week prior and this week Carly remains critical.
Here's a break down on what has happened this week:
* To go along with the yeast/fungal infection that was found in Carly's lungs last weekend Carly also developed a UTI (which isn't surprising). Carly now is being followed by the Infectious Disease team daily. They have looked at many things to see if this yeast or fungi has grown in other parts of her body. An abdominal ultrasound of her kidneys and liver was good and showed no signs of an fungal ball/emboli but did confirm her liver is quite large. Another heart echo showed no signs of bacteria in the occluder devices that repaired her VSD and ASD. Thank the LORD as this can be fatal. The opthamologist came yesterday to look for fungal infections in her eyes. We are still waiting to hear the final verdict on that. The other good news was that Carly's blood does not show bacteria. Carly has been on SSSOOOOO many antibiotics and they have been started and stoppped for several reasons. Currently they are treating this fungal/yeast aggressively and hopeful that it will be stopped. However, all the good bacteria in Carly's gut has been killed because of all the antibiotics. As a result she continues to fight severe diarhea which does not help the dehydration piece and her slow drip of milk into her tummy is not absorbing like it should.
* Carly continues to have some bloody secretions when suctioned. On Tuesday the dr's did a bronchoscopy again of her lungs. There was some irritation but no real trauma at the end of the endotracheal tube which is where they suction her lungs. Instead the dr's felt her lungs showed yeast infection and signs of a resolving pneumonia. The body and lungs will shed blood and dead tissue which is most likely what we are seeing come up.
* Carly's lungs and kidneys are at battle. This often happens when someone is on diuretics to help dry out the lungs but becomes too dry in the kidneys. Although no fungal ball showed up on ultrasound to indicate some sort of blockage the dr felt she still may have an infection in her kidneys which is causing them not to profuse as well as they should. Carly is showing signs of kidney failure. The renal(kidney)team is now following Carly daily. Yesterday they made several recommendations and a plan for trying to save her kidneys from needing dialysis. The doctor said this will be a day to day decision based on the labs, in's & out's (this is how much fluid goes into the body and how much Carly pees or poops out). Keeping a balance on this the toughest and can afect so many things.
*This fluid thing has also affected her blood pressure. She's has had low blood pressures several times. Carly has had two more blood transfusions this week to bring up her hemoglobin. She currently is on Dopamine which is a blood pressure med. This was started yesterday to see if it would also help the kidneys profuse better. The alternative is to give Carly more fliud to help bring her blood pressure up. However, Carly is VERY fluid sensitive and again this goes straight to her lungs and face. Although this may help her kidneys and blood pressure her lungs again are being compromised. With added fluid to her lungs then it becomes harder for her to breathe and then needs addtional support from the ventilator. The systems in our body are constantly fighting each other. To help one system or organ, the other has to be compromised.
* Ventilator settings are changed frequently based on labs and how her lungs are exchanging gases. We are up & down on these settings constantly. On Wednesday they tried Nitric Oxide to see if this would help Carly oxygenate better as they tried weening her vent settings. Carly continually breathed this through the vent but showed no improvement or changes. This was then stopped on Thursday. Position does help her oxygenate better especially laying on her left side and on her tummy are the best. Carly continues to be heavily sedated to help her remain comfortable and breathe easier.
* Many people have asked us what are they calling this? What has happened to Carly's lungs? To answer this....Carly sustained damage to her lungs the last two years from being premature, having extra blood shunt to her lungs from previous heart defects, pulmonary hypertension, and aspiration. Then she became sick with pneumonia. Then her lungs have taken an extra blow with this current yeast infection. Also, just being on the ventilator can cause some trauma. To give this a name Carly has developed ARDS which stands for Acute Respiratory Distress Syndrome. All of the above things can occur with ARDS and the recovery is again very lengthy.
These last 25 days have spiraled. I believe even the drs are surprised, not to mention us, that we find ourselves in a siuatuion nobody expected. Although Jaime & I know we are in for the climb of our lives the drs felt inclined to make it clear to us that this will not be an easy ride which ever road Carly takes us on. Yesterday was a very hard day for us as one of the docs spoke with us and painted a very grim picture for what the future might hold. He spoke of several more weeks in the ICU on a ventilator for Carly. If & when she does not require breathing support anymore from the ventilator Carly will require additional time in the hospital to recover and set in place things that will be required for long-term recovery (at least months). Once home Carly will require many things to keep her lungs clean and functional in order to maintain and grow new tissue. Other docs agree that this is a very long process but seem more hopeful. All the docs say there are many more things to try and we are not running out of options yet. A care conference may be scheduled for next week to get everyone involved in Carly's care in the same room and discuss what the future holds (like any one can predict anything anyway and I hope to hell they have a very large room)and a plan(which may include good & bad). However, Carly is in the drivers seat and ultimately will direct us. Her mommy and daddy have not and WILL NEVER GIVE UP! She has never given us less and gives her best everyday. That is the least we could do for her. We put our faith in GOD that he will guide us in the right direction.
THANK YOU...THANK YOU...THANK YOU to all of you that sign Carly's website, visit us, send cards, hope and prayers. Your support means more than you know!
LOVES, HUGS, KISSES & SMILES,
Carly, Maria & Jaime
Saturday, March 10, 2007 11:44 AM CST
****UPDATE****
Sunday 3/11
The most recent culture from my lungs was positive for a yeast infection. I was started on a new antibiotic for this. The docs are hopeful that this will speed up my recovery in the long run but may not make a huge difference in the next couple days. Yeast infections (thrush) can start in the mouth and make its way down the ventilator tube and have quite the party in the lungs. So....we will be putting a stop to that! Also, since I have been on SO MANY antibiotics to kill off other things it is not uncommon for a yeast infection to be underlying and to make an appearance later! So there ya go......finally an answer to part of the mystery. At least this is treatable. I was also started on another diuretic to help me pee and get some fluid off my lungs & body. So far so good. I had an uneventful & restful night and good day so far. Hopefully tomorrow will bring some ventilator setting changes in the right direction! Catch ya later!
"When you come to the edge of all the light you have,
and must take a step into the darkness of the unknown, believe that one of two things will happen.
Either there will be something solid for you to stand on - or you will be taught how to fly." -Patrick Overton
~~~~I hear whispers in my ear....heal, get better soon, I love you, and be strong! That I am trying to do but at my own pace. As you read from last journal entry I was having a few good days. However, on Thursday I became too "dried out" and all my secretions were thick and I was having some low blood pressures. To help that they gave me some fluid and it literally went to my lungs and my eyelids. Back to being somewhat puffy and my breathing slowly started to regress. By Thursday evening and Friday ventilator settings went back up. Now I am currently needing 40-50xygen, peep at 13 and rate at 24(You can refer back to last journal entry to better understand what these numbers mean).The balance of fluid is oh so delicate. I am very fragile in teetering one way or the other.
Another step backwards occurred yesterday....I started to spike another temp(which I had not done in several days)which I received Motrin for, but the cause? Since it will be two weeks tomorrow that I have been intubated it is not uncommon for a bacterial infection/pneumonia to occur. UUGGHH! Small amounts of water collects in the tube that goes into my mouth because the oxygen is humidified. Wherever there is water bacteria can grow! A culture of my lung secretions was taken yesterday and will take aprox.72 hours to see if anything grows. In the mean time I have been started on two new antibiotics and the other two that I have been on were stopped. This could also explain the need for additional support from the ventilator.
With the abrupt change in progress they had another look at my heart with ECHO and it showed some right pulmonary pressures elevated. The right side of the heart is responsible for pumping blood into the lungs. Since my lungs are "stiff" (so they say) things tend to back up some. To help dilate the blood vessels and help the heart pump I was started last night on a new heart medication called Milrenone.
Few other things that everyone is watching closely is that my liver is more enlarged but overall liver function tests have been fairly normal. Also, my kidney function labs were slightly elevated. The doc is not too concerned yet. She said they are still in a safe range but likely to be elevated from all the diuretics.
I have been tolerating my feedings pretty good. My abdominal distention has not been problem. This morning I was started on 25 cc's per hour. I continue to receive TPN & lipids for extra calories & protein. I have quite the recipe for making things move along the GI tract. Now I have watery stools. So we will be backing off on some things to tsee if that helps my chapped bum.
I continue to be sedated getting: chloral every 4-6 hours and Versed and Fentnyl every hour or as needed. I have my nights and days mixed up because I try & be more awake during the night. I also continue to get my respiratory therapy treatments four times per day which consists of nebulizer treatments, BD's(bronchial drainage) & suctioning. For the BD's they lightly beat on my lungs with their hand or use a vibrator for several minutes. This is supposed to help loosen the secretions for better suctioning. Also, yesterday small traces of blood showed up in my secretions which probably indicates the area just below the tracheal tube is irritated. UUUGGHH! We just can't win. The RT and the nurse are being extra careful in not going too deep when suctioning to iritate it more.
So for now....we continue to SLOW dance!!! Hoping this next week brings only steps forward.
LOVES, HUGS, KISSES & SMILES,
Carly
Wednesday, March 7, 2007 1:41 PM CST
Hey All!
I am resting comfortably at the moment and wanted to bring you all up to date. I believe yesterday & today I am starting to turn the corner for the better. I still have a ways to go but we really have not taken any huge steps backwards recently. Some highlights of the last few days:
* I came out of isolation: I am still in a private room with my very own nurse but visitors & medical staff do not have to wear a gown or a mask. They take these precautions in the beginning when the risk of bacterial or viral infection is pending. The mysterious part is nothing has ever grown out of the cultures...a viral something or other is still pending. I am still on one IV antibiotic until I am off the ventilator just to be safe. No fevers recently just get a little warm depending on room temperature.
*I received another blood transfusion on Monday to help bring up my hemoglobin.
* Sunday & Monday I continued to look like a prize fighter without the black-eyes (just way too puffy). The doctor said I needed to lose three pounds of fluid so I have been on a continous drip of diuretic and this has helped me pee tremendously. Finally yesterday I started to look like myself again. I am still on this drip but at a lower rate. My wet lungs still need some drying out.
* Monday was kinda a yucky day because I needed the two IV's that were going into my port to be changed. Putting new lines into the port should have been a quick process but turned into a 45 minute heartache for me & my mommy. The nurses were having trouble getting blood to draw back from one of the needles once it was in but could flush it with saline. However, they did not feel confident the needle was in the right spot. It's kinda like trying to put a dart in a hidden bullseye!! So FOUR more pokes and still no luck. So instead of trying a fifth time they tried a blood thinner to break up a blod clot and YEAH finally it worked. The nurse was able to draw blood out. UUGGHHHH! The worst part was since I did not have any IV lines hooked up I was not getting any pain or sedation medicine. So I was awake & feeling all of this. At one point I opened up my eyes and my mommy could tell I was crying. A tear ran down the side of my face. My mommy comforted me the best she knew how. Next time this process WILL go more smoothly and they will get it right the first time. The whole reason behind this port was so I did not have to be poked several times! Unfortunately this is another episode that shows how tough I really am!
* The encouraging thing is that over the past two days my ventilator settings have come down instead of going up like they did last week & over the weekend. There's three things that are looked at when getting off this ventilator: #1 is percentage of oxygen. 21% is considered room air. Since I have always had a need for some O2 requirement I may not get to 21% but close. In the beginning I was a high as 80-100%. Currently I am between 36-40%. #2 is respiratory rate and this is how much help I am getting breathing from the ventilator. I have been as high as 38 and currently at 16. The lower the number goes the more I am breathing on my own. #3 is called peep and this is how much pressure of force is needed to keep my lung tissues open in order for them to fully oxygenate. This is what I have needed most help with. I have been as high as 14 and now at 12. 12 is still a high number and the docs say they usually do not take the ventilator out until this peep # is between 3-5. Turning this down by 1-2 numbers usually happens only 1-2 times per day. So it can be a slow tedious process. On Monday, the pulmonologist said at BEST another 1-2 weeks on the ventilator but unpredictable. We continue to hope & pray for sooner but mainly no more bumps in the road to set us back.
* I am continuing to get small amounts of food in my tummy but we have to go slow. My bowels are filled with ALOT of air which makes my stomach look SO big. I am on just about everything to pass gas and get things moving. Finally the last couple days have been successful. If my tummy gets too big then it becomes harder to breathe. So to help my nutritional needs I get TPN which is nutrition in an IV.
We would like to thank all of you for your continued prayers & support and checking in on me & my mommy & daddy. Thanks to those who have provided us with meals, a visit, cards & stuffed animals, and plowing of our driveway. It all means so much and the prayers are working. Looking forward to brighter days....until next time!!
LOVES, HUGS, KISSES & SMILES,
Carly May
Sunday, March 4, 2007 1:22 PM CST
Friends & Family:
We wait patiently, running in place, two small steps forward, three steps backwards. The days have started to run together but yet can't believe it was last Sunday when I had this breathing tube placed. I have had some good and bad days over the later part of the week. I will continue to need support breathing at least until next weekend but doctors cannot make any promises. From there I am looking at several weeks of continued recovery in the hospital. It continues to be a long & windy road but making slow progress. My underlying lung disease has only prolonged this healing. I am still very sedated. Actually they went up on my sedation meds the last few days because I was starting to breathe more & more over the ventilator and getting quite agitated. If I can explain this ventilator stuff at all it's like this: they do not want my lungs to run marathons but walk ever so lightly over the work of the ventilator. I can't get worn out but yet still need some exercise for my lungs. Again the slightest tweak of the machine everyday or every other day in the right direction or in the wrong direction is part of this very complex jigsaw puzzle in keeping my lungs open and well oxygenated. The x-rays of my lungs have improved the last few days but now the right lung seems worse than the left side.
Over the last few days I have started to become more & more puffy all over. Being sedated and on the ventilator without any movement one retains alot of fluid. I continue to be on IV fluids because my continous feeds into my G-tube have not gone very well. Yesterday I was not digesting my milk very well and it was continuing to pool in my tummy which was making it harder to breathe. I was getting fed at a rate of 20 cc's/hr and after about six hours the nurse pulled out 100 cc's out of my belly. My bowel sounds are VERY slow. So today the rate is 5 cc's an hour (which is hardly anything) but I need to have something going through my intenstines to keep motility working.
I had a pretty good night last night and resting comfortably today. I was able to lay on my belly for the first time and loved it. That's how I usually sleep anyway! AAAHHHH!
For now I will continue to fight through this and take one day at a time! Keep praying for me!
LOVES, HUGS, KISSES & SMILES,
Carly
Wednesday, February 28, 2007 10:50 AM CST
Hi Friends!
Sorry I am a little behind in updating the last few days. On Sunday I had to be intubated. My little body & lungs were tiring very quickly. My awesome nurse Katie & docs decided to make a proactive decision to put the ventilator in before I stopped breathing all together. It has been the best thing for me, now I can rest and have help breathing so my body & immune system can fight off this infection. After the tube ws placed they also looked at my lungs with a scope and took a sample from my lungs. The doc did not see alot of mucus plugs but saw alot of redness, edema, swelling and some blood (more on the left side)and thought this was pretty consistent with a virus. The last few days they have been trying mucus mist which I have been inhaling. It smells like rotten eggs and is supposed to trigger increased coughing of mucus. However there has been less and less mucus so they discontinued that this morning.
I was continuing to have temps on Sunday & Monday. Yesterday the temps had improved and I had my best & most stable day. Last night the highest temp was 100.9 but I am also sensitive to room tempurature. Blankets on ...Blankets off..I also had two episodes of both legs shaking/tremoring involuntarily that lasted for a few minutes each. The docs think it was "chills" and not a seizure. Thank GOD!
Nothing...Notta has grown out of all the cultures I have had...blood, urine & sample from the lungs. However, they are continuing to assume viral and those cultures can take up to 21 days. This morning they have weaned me off some of my IV antibiotics and finished my round of oral antibiotics. I continue to get constant sedation medication..Versed, Fentanyl & chloral hydrate to keep me comfortable. I will get agitated and fidget around when they suction my throat and mouth to make me cough & when they give me my breathing treatments or weigh me. Last night I opened my eyes & saw my mommy and waved hi and signed for milk. This morning I was more awake and saw mommy & daddy and signed for milk again and waved hi. I even kept my eyes open for a few minutes to watch a cartoon...then back to sleep. They do have to tie my wrists down somewhat so I do not pull at things. Yesterday as the nurse & mommy were repositioning me I was quick and made a move for the tube in my mouth but was stopped in time.
Being on the ventilator means alot of tweaking of this, tweaking that etc...upping this, dicontinuing that etc.. to keep my pH, blood gases, electrolytes and oxygenation all in balance. These things are checked frequently throughout the day. I am getting potassium supplements through my G-tube and in my IV to bring that number up. Those banana daquiris are quite tasty! The last couple days also have been tough because I started to retain ALOT of fluid. My little eyelids and body all over was very puffy. I was not peeing like I should so thay changed my diuretic and put in a catheter to help me pee. AND that I have been doing... I am now back to my orginal weight but my lungs are still wet so they will continue to with diuretics. This morning however my foley catheter was leaking so thay took it out and we will see how I do. My chest x-rays still look kinda yucky and the left side of lungs still crackle.
Accessing blood on me has always been very difficult..I look like a pin cushion all over. So Monday evening I went to the OR and had a port put in the right side of my chest. An incision was made and this port was placed underneath the skin connected to an artery. Now I will not have to be poked over & over. They can use this port to draw blood out and put things in my body through IV. I can go home with this in me and can have it up to a year or more. It works pretty slick.
I also had an ECHO of my heart and all looks well. My cardiologist Dr. Lohr said my liver is larger than normal but again usually indicates my body is fighting an infection.
The CT scan of my lungs was finally looked at & discussed. Unfortunately, it looks very bad and that's when I was fairly healthy. Pulmonary hypertension is not on the top of the list anymore. The docs feel most of my lung disease is from aspirating into my lungs when I drink and eat and even swallowing my saliva. My nissen function will have to be tested again to see if I am refluxing from below because I have vomited recently and I am not supposed be able to do that. When the sample was taken from my lungs thay also tested the tissue for aspiration. If the number is 250 or more it indicates severe aspiration. If the number is below 50 it indicates no signs of aspiration. My number was 125. Once this infection is under control and I am out of ICU and I am looking at a long road of no eating or drinking to protect my lungs. I also may have to go back to a GJ tube which the food bypasses my tummy and goes directly into my intestines. The docs said my mommy and daddy will have to do some additional things to keep my airway clean but did not go into detail and will continue with breathing treatments. This will suck but it may also save my life! We will do what we have to do!
All in all we are taking one day at a time and GODS hands will see me through this! I am a fighter and will pull through this. Please continue to pray for me!!
LOVES, HUGS, KISSES & SMILES,
Miss Carly May
THIS TOO SHALL PASS
If I can endure for this minute
Whatever is happening to me,
No matter how heavy my heart is
Or how dark the moment may be-
If I can remain calm and quiet
With all the world crashing about me,
Secure in the knowledge God loves me
When everyone else seems to doubt me-
If I can but keep on believing
What I know in my heart is true,
That darkness will fade with the morning
And that this will pass away, too-
Then nothing in life can defeat me
For as long as this knowledge remains
I can suffer whatever is happening
For I know God will break all of the
chains
That are binding me tight in the darkness
And trying to fill me with fear-
For there is no night without dawning
And I know that my morning is near.
-Helen Steiner Rice
Tuesday, February 27, 2007 2:06 PM CST
Long update coming soon......I have to take a little snooze and slurp a few banana daquiris (potassium supplements) before i can wrap my arms around all that has happened the last two days!!!
Talk Soon!
MISS CARLY
Sunday, February 25, 2007 6:49 AM CST
Carly here!
I usually try not to complain or swear but I think the last 24 hours have been similar to HELL! Now that I am older and understand so much more and can communicate some of my needs it makes it very hard. Yesterday morning I had to be suctioned several tims because my thick secretions were becoming harder to cough up. The left side of my lungs were not moving air and somewhat collapsed.I was continuing to have difficulty keeping my sats above 90%. I was on 5+ liters of O2 plus they were having to hold another tube in front of my face blowing oxygen into my mouth. I was so agitated after awhile. My nebulizer treatments started to be no fun and I tryed everything to get them out of my face. So mommy and daddy and the Drs decided to try something else. So.....we went camping! Yep I got inside this plastic tent on my crib that filled up with warm humidified oxygen. It was kinda fun temporarily. I had my monkey in with me and my DVD player. It seemed to help some in that I was coughing up more secretions. The other thing that happended was my IV came out of my arm during that night. So I went for about 12 hours without any IV antibiotics. I was then poked 10 times to attempt another IV. Lab tried, vascular access tried with an ultrasound and finally an anasethologist from the OR was able to get one in on my foot but it's not the best and could fall out at any time. It is crucial that I have a very good IV so I can continue to get fluids & antibiotics so the docs wanted to try and put a PICC line in my arm. This is a deep, long IV that runs from my forearm crease up into my arm and stops close by my heart. However, the down side was that I needed to be sedated and the possibility of being intubated (breathing tube)was 50/50. WEll.....no such luck getting the PICC line in. My vein spasmed and would not allow anything in. My fever also spiked to 104.1 so they had to draw more blood to culture...we have to find out what is causing these fevers!!! Also, during the procedure I needed help breathing because my left lung was moving no air. They hooked me up a B-PAP machine which gives me pressure in & out opening up my lungs so I can breathe easier and oxygen can get in. I kept this on and slept peacefully until about 4:30 this morning. Then I woke up mad as HELL! Signing for milk and wanted this mask contraption off my face.The nurse tried to give me some Versed but it made me more agitated. SO they took off the B-PAP and I did ok. Still not moving much air this morning through that left side, definitely harder for me to breathe and my sats were in 80's to low 90's. It did dip into the 60's when I fell asleep for a short time. A little while ago they gave me some Ativan to help calm me down so they could put the mask back on my face. I am restless and a little agitated and keep signing for milk. THIS SUCKS! My fever did spike again some but not quite so high.I am not sure what today will bring but even though I am complaining I continue to be such a fighter. I will beat this & get out of here! Please pray for me and send good vibes to my left lung to start working and no more fevers and please GOD no breathing tube even though I hate this mask.
LOVES, HUGS, KISSES & SMILES,
CARLY
Friday, February 23, 2007 9:28 PM CST
Hi!
Have not been feelin so hot lately. Beginning of the week I started not being myself again. Back to ER/hospital we went on Wednesday night. Fever spiked to 103.5, needing more oxygen and my breathing was distressing for me and mommy & daddy. I got an IV and hefty antibiotics, steroids and yes another X-ray of chest confirming more pneumonia but this time in left lower lobe. The upper right lobe has been better. I had an ok day yesterday but last night was a rough one. I have these episodes when my fever spikes and I have difficulty breathing as well as clearing all the thick yucky mucus from my chest & throat. My oxygen saturated into the 30's! SCARY..but I recovered needing 4-5 liters of O2. So this a.m. they moved me to the peds ICU to monitor me more closely. The docs were talking about giving me a little breathing support like C-PAP or even being inubated but so far I have been holding my own. I had a restful afternoon but this evening more fevers & yucky mucus creeped up on me again. Still needing alot of oxygen. It may take a few days before this starts to turn around again. Once again my flu and RSV have been negative. They are treating me as if I have a bacterial pneumonia as a precaution but it being a darn virus of some sort it's a matter of riding it out. I am on mega doses of vitamin pee (Lasix) again , increased Viagra, and I am mastering this nebulizer thing. I'll be able to teach a thing or two once I am outta here. I have already mastered the stethoscope...I place in the right spot every time! HA! Hoping to be in a better place tomorrow and maybe back on the regular unit. I'll keep ya updated soon! For now I'm gonna go cuddle & go night-night!
LOVES,HUGS,KISSES&SMILES,
Carly May
Friday, February 9, 2007 7:49 PM CST
I'm sure glad to report from home once again!!! Made it back yesterday afternoon. Feelin' so good I picked up right where I left off. I think the excitement of being in familiar surroundings, feeling better and a continual high of steroids & albuterol led to NO naps the last two days. UUGGHHH! That meant melt down in the evening. Finally I am off to nighty-nite! Mom & dad are busy...still need nebs every four hours for the next week,some nose suctioning & seven different meds several times per day to track. Kinda like the ole' days, but temporary, thank goodness! This week I have started to say MAMA more frequently and my walking just holding onto one finger has REALLY improved. (I think it was from being couped up in that crib for several days.)I can make one's heart melt by the simplest milestone! Yeah me! A big thank you to my great aunt Joy for coming to stay with me while my mommy & daddy took a break. You are awesome! Hoping soon to get my normal schedule back on track! Thanks all for checking in on me & we will talk soon!
LOVES, HUGS, KISSES & SMILES,
Carly
Wednesday, February 7, 2007 8:30 PM CST
Hey all!
Carly here. I just got doing writing a journal update & then accidentally erased the whole thing! UUUGGGHHH! Anyways, I am reporting from room 202 at the hospital. I had to pay a visit in 2007 to make sure everyone's still working hard & doing a good job. Last week I developed a cold & by saturday it had gone into my lungs and I started having fevers as well. It was becoming harder to breathe and was needing more oxygen. On Monday my mommy brought me to the clinic and a chest x-ray showed yucky lungs. So I was admitted to the hospital Monday evening with pneumonia! YUCK! Slowly getting better. Have been treated with antibiotics, oral steroids, diruretics & increased nebulizer treatments. Initially it was every two hours, now today...every three hours. When I reach every four hours I can go home as long as I am stable. But have you ever seen a two year old wired on Albuterol & oral steroids? Quite a sight. My mommy & daddy just giggle at me. I was trying to stand on my head while the dr was listening to my lungs..hee-hee ( Oh maybe you just had to be there to appreciate the humor). My mommy warned the respiratory therapist last night that if I was not sleeping by the time my midnight neb treatment was scheduled he was babysitting. Well, 15 min. to spare I fell alseep at 11:45. Wow, do I get WILD! Hoping to go home tomorrow but still needing about 1.5 to 2 liters of oxygen but the doc said it may take 2-4 weeks before I noramlized back to my baseline which is about .5 liters. Once this hurdle is jumped then onto a game plan for tackling the problems ahead that were found on my lung CT scan results I had two weeks ago. I will explain all that in my next journal update. Hoping to chat with you all from my own crib next time...until then a final thought for this hospital stay.... May we remember to always teach our children that...."Life is not measured by the breaths we take, but by the moments that take our breath away!"
LOVES, HUGS, KISSES, & SMILES (which all of I am still doing despite everything)
Carly May
P.S. Please applaud my cousin Shea back in Monatana for raising $800 and doing the polar plunge for special olympics. CLAP! High five!
Thursday, January 4, 2007 11:49 PM CST
UUUUURRRCCCHHHH! Yep I know it's 2007 but were going to reverse it a bit back to 2006 and bring ya all up to date. So sorry to keep ya waiting... First of all Happy New Year and hope everyone had a blessed holiday season! If your reading this thank you for your patience in waiting.... I was lucky Santa made it to my house cause I was lacking in the journaling department. Anyway..on with it!
Well four days after my surgery back in September I joined many special friends for our annual Buddy Walk! What a gorgeous day to celebrate. A very long overdo thank you goes out to my team who walked with me and all my supporters who donated money. Thank You, Thank You!
That following week I received the culture results on my sinuses..Staph infection....yep....yuck! So 42 days later, (right before Thanksgiving) I ended a strong course of antibiotics. So, by that time the 'booger sucker upper' went back on the shelf & life was dandy! I could finally breathe again and no real complications. Heart had recovered well from a little trauma & my oxygen need was reduced.
Mid-October I had another hearing test & follow up with Dr. Rimmell (ENT) to discuss options for improving my hearing. He explained that surgery on my left ear to remove extra bone would be the best option for improving my hearing to a normal to mild loss range. He said there would be no guarantee, however, that I still might need a hearing aid in that ear. However, using just a hearing aid & avoiding surgery would not be an option because my canal in that ear is soooo small it just would not work. He discussed the procedure and risks which would involve likely going home the same day but the Dr. Would have to take some skin from my buttocks to patch the canal in my ear (my mommy requested EXTRA skin from her buttocks be used but he didn't go for that). The most scariest part of this surgery is that there is a very small risk that a facial nerve could be nicked and as a result one-sided facial paralysis/droop could happen! UGH! My mommys heart sank! So, since then my mommy & daddy have not done much with that. Avoiding yeah?! Know we have to tackle it sooner or later yeah?! We all agreed after the new year we would make some decisions and pursue a second & third opinion & get another hearing test before proceeding. Well, what do ya know, here we are it's 2007! Apts. to be made soon & keep ya posted on the plan. Do not want to delay my hearing & development any longer if we do not have to.
Got some new spectacles in November. My right eye was starting to drift inward a bit when I focused on things up close. The doctor seemed to think this was pretty typical & possibly outgrow my glasses in a couple years.
Mid-November I had a one year check-up with Dr. Bass. He's one of the kind souls who operated on my heart & inserted the device one year earlier. He was happy with how I was doing but decided to start Viagra (now called Revacio) ssshhhh.... don't tell dada were trying to trick him! to give my lungs a boost. Since then I have seen my pulmonologist, Dr. Shreve & Dr. Lohr, cardiologist! They continue to be stumped why I desaturate off the oxygen into the 70's & 80's. Ideally I need to stay above 92. So as of yesterday, I met with Dr. Lohr (who we love dearly) and she increased the Revacio dose over the next couple weeks to a therapeutic level and hoping this will show some improvement. I will be also having a CT scan of my lungs soon, but that requires seadation to keep still...hoping & praying for some answers to our questions and/or this drug will be the answer. However, Dr. Lohr did caution my mommy that it can just be a matter of time until I am 3-4 years old for that bad/ugly/injured lung tissue to be replaced by new/healthy/beautiful stuff and I no longer need O2! Praying, Praying, Praying that time will heal (okay sooner than later)!
In November I also paid a visit to the dentist! I was good as long as the dentist kept the mask off her face. She completed a quick exam & said things looked fine except I will not be getting two of my bottom teeth. The dentist explained that it's likely a blessing because then I will not have an overcrowding problem with my small facial/mouth structure.
Also, in November I also started up those terribly expensive monthly synagis shots for RSV to help protect my lungs. A girl can buy SEVERAL high-fashion wardrobes with the cost of one shot!! Hopefully, next year I won't need the shots!
I continue my therapies weekly! My teacher Kim from the school comes one time per week. My buds Claudia, Brian & Dawn (SLP, PT, OT) continue to work with me a couple times per week! I am working toward my goals and getting high fives, hugs & smiles as we go!
I crawl just about everywhere or cruise along things. I mastered going up the stairs some time ago. Walking...getting close! I waddle around pushing small carts, wagons & bikes....just needing a little support. Recently...have been taking 10-20 steps with a one finger hold or walking along the wall. I think I just need to build my confidence...."I Know I Can, I Know I Can!!" I am being two...ya know independent! Even had my first taste of toilet water....thank goodnes it was flushed, then off to the fridge...open it up and then tried licking the Roses lime juice bottle...mmm that tastes better.... yeah my mommy was home watching me I promise she just doesn't let me run-a-muck but I am just that fast! HA! I continue to play hard and pull out all the stall tactics when it's time for bed. Sign for milk, drink, book, bath, whatever works. If all else fails...pull off your oxygen or pull out your G-tube!!! That will get them every time! Happened so many times in December I was stuck wearing onsies or button up pj's for a week stright. Now, that's not fashionable! HA! Even Katie & Great Aunt Joy got in on the action!!
My appetite seems to be improving for the most part....some days better than others. I am a good lunch & dinner eater. Wasn't liking the Pediasure too well so now on to regular milk. That tastes better! Still need my liquids to be slightly thickened and supplemenation with pediasure through my G-tube. Will be meeting with GI DR in a couple weeks to discuss diet, nutrition, etc. again...gotta keep on top of this to keep growing BIG & STRONG! OH, speaking of strong...daddy taught me how to show off my muscles. It's quite hilarious, I'll try and get a picture posted of that one!
I continue to amaze my parents each day on how darn cute & smart I really am. We try to belly laugh everyday & enjoy every moment. Tomorrow is a new day & 2007 is a new year that is sure to bring great things to the Harris': Good Health & Healing and a new Baby Brother! Yep, that's right, I am going to be a BIG sister come May. I kiss mama's belly everyday!:)Things all look good for my little brother. I am actually gonna get a glimpse of him tomorrow at my mommy's ultrasound apt. I will wave & say hi!
Okay...now I can go sleep since I got all that off my chest. Again sorry for the long delay in updates. Now my mommy has just got to figure out her new computer & how to get some updated photos. Da Da will have to come to the rescue! Promise in a day or two! Watch out 2007, here comes Carly!
LOVES, HUGS, KISSES & SMILES:
Miss Carly May
Monday, December 4, 2006 9:47 PM CST
We have not forgotten, things are going quite well. I am not allowing my parents any time to do anything...as you can tell!! A long update to follow soon along with some long overdo updated pictures!
Talk Soon!! Carly May
Wednesday, September 27, 2006 8:50 PM CDT
Carly here!
Another surgery down & doing well. Went in to OR at 8:30. Was able to see my mommy & daddy at around noon. Got alot accomplished but also found some more "stuff"! Tonsils came out, more adenoid tissue out, tapped & cultured my sinuses. Should know the results of that biopsy on Monday. Could be put on an antibiotic depending on the results. Bronchoscopy of my airway looked great. But... my ABR hearing test showed a mild hearing loss in the right ear & a moderate loss in the left ear. However, during the ear exam Dr. Rimmell found the bone structure in my left ear is not normal and causing some hearing loss. Dr. Rimmell said he could do surgery to fix this and avoid having to need a hearing aid but would need to see the full ABR report & talk with the audiologist before making a decision. Not sure of the exact anatomy on this one or what surgery entails but will find out more soon. Gotta cross one bridge at a time. Right now focus is on getting healed & getting back to normal life as I know it. Also, third pair of PE tubes in but again left ear canal very tight due to this bone overhanging on something...(okay, okay I'll get my anatomy book out tomorrow & give ya the technical version of this ear problem). But sounds fixable just would have to endure yet another surgery. We thought we would never reach double digits for the # of surgeries I have gone through but unfortunately it has! Good news also, I have been drinking my thickened water like a champ & ate a blue popsicle that made my whole mouth BLUE! Also, my breathing has greatly improved so far & nedding less O2, now down between 1/2 to 1 liter where I was needing 3 liters 2 weeks ago. YA HOO! Hoping this continues to get better & better & better! Well, hoping to escape out that tunnel tomorrow back to Lakeville. Good night to you all & thanks for checkin in on me & saying prayers. Once again it has paid off.Until next time.....
EXTRA Loves, Hugs, Kisses & Smiles,
Miss Carly
PS: I did even manage to throw some kisses to some of my medical team today...how cute am I???!!!
Tuesday, September 26, 2006 8:41 PM CDT
Hi All!
So sorry for not getting back to you all sooner! Yes I did manage to escape out of the hospital thru the tunnel we have been digging for the past two years! Now we always have a back-up plan if the docs don't let us out when we want the next go around (hopefully there won't be any)! I got out on Saturday the 16th. Last week consisted of new oxygen apparatuses in the household to help me breathe better, more suctioning, more meds & FINALLY sleep, which I did not get while in the hospital. I am already starting my teenager habits...sleeping until 9, 9:30, 10, 10:30! Wow! I needed to catch up! Well by Frid./Saturday I started to turn the corner some! Less congestion which means less suctioning, no more breathing equipment, less nebs, less oxygen & overall feeling more like myself...getting over this croup thing. So, yesterday I had a follow-up ECHO with my pal Jim & things have improved a ton! Ya-hoo! The pressures in my lungs are now around 40 (still kinda high but much better than 70), the right side of my heart is not working so hard & has decreased back down to normal size & no more back flow thru my tricuspid valve, which is a good thing! Hope ya got all that! Ha! Today, I saw the pulmonologist for a re-check & pre-op. He gave a thumbs up all around...doing much improved from 2 weeks ago & said to proceed with surgery tomorrow! So I will march in the OR once again in the morning being the little brave warrior I am! I am having the works done... tonsilectomy, sinuses tapped & flushed, ear exam, possibly new tubes, hearing test, clean more adenoid tissue out, largnoscopy & bronchoscopy to make sure nothing is missed in my airway! The 8 for 1 deal! Should just be in overnight & home on Thursday & PRAYING & HOPING that this resolves many issues. Keep me in your prayers & I promise to update tomorrow on a successful outcome. Thanks much for the continued love & support.
Also, just a couple updates from tests I had done in the hospital...the PH probe test was negative & an upper GI test was good indicating my nissen is intact & working great..no reflux! Had a another swallow study, still aspirating on thin liquids but okay on thickened. Amazing thing is that my tonsils have doubled in size since May. No wonder I can't breathe or eat!
Just another quick note on the Buddy walk this coming Sunday. If you would like to donate but haven't click on the link below (Carlys personal fundraising page)...no amount is too small! Thank You, Thank You! You can also click on DSAMN (Down Syndrome Assoc. of MN) to donate there too! If you would like to join us for a great event, let me know & you can join our team!
Well, I better get to my crib, 5:30 gonna come very early.
LOVES, HUGS, KISSES & SMILES....
Carly May
Friday, September 15, 2006 10:08 AM CDT
Hey All...
Carly here! Just wanted to give you all a quick update on the happenings. Ya know, we were all starting to get too comfortable so I had to mix it up a little...Carly style! I have been continuing to have difficulty breathing due to my upper airway congestion...which has meant more suctioning, less sleep for all, less of an appetite & more oxygen! Over the last week this has become even worse & again needing more O2 & much work to breathe. Coincedentally, I was scheduled for a procedure called a PH probe on Wed. that would have required an overnight stay. This procedure was recommended by GI to evaluate if my Nissen is still functioning & look for signs of reflux, which could lead to aspiration.
So....my overnight stay has been extended!! When I got here on Wed. I was sedated with some medicine and the probe was placed in my nose and down my esophagus for 24 hrs. (those results still pending). An ECHO & EKG of my heart was completed afterwards and we found some disappointing news. My heart is in mild heart failure due to my lung pulmonary hypertension. Pulmonary pressures are 70+ which is VERY high which makes the heart work harder than it has to & becomes enlarged. The root cause....still investigating!!!! Good News though.... Drs do not believe it is primary lung disease which is not reversible. This is treatable & reversible. THANK YOU LORD!! Possible causes or a combination of: obstructed upper airway ( my tonsils are huge and still congested), aspiration, or ??????!! To help us sort this out we attempted another sleep study last night...I surely did not go for that!! HA! I am scheduled for a swallow study at 1 today and if things stabilize in the next two weeks I will be having surgery on the 27th to yank out the tonsils & flush/clean out my airway/sinuses. I am back diuretics Vitamin Pee(lasix) to get rid of excess fluid on my lungs & will be starting some heart medicines to give my heart a little help! Nebulizer treatments increased to four timrs/day with daily pokes for blood!Also, once the symptoms have improved I will be started on Viagra or something similar to decrease the pressures in my lungs! To top it off and make everything worse...I have croup! YUCK! So for now we will hope & pray that things stabilize soon & we can do more healing at home! It's better that way! I will try to keep ya posted & for now keep me in your prayers & I'll post some pics soon!
LOVES, HUGS, KISSES & SMILES,
Miss Carly May
Wednesday, August 2, 2006 2:07 PM CDT
QUICK UPDATE: Please see the links below for information on the annual BUDDY WALK to help support the Down Syndrome Association of Minnesota. The walk is Sunday, October 1st in St. Paul. We would love to have you join us & walk with CARLY'S CLUB!!! If you cannot be there but would like to help out a great cause you can go to Carly's fundraising page and donate. My goal is to raise $1,000. No amount is too small! THANK YOU!!! THANK YOU!!!
ORIGINAL MESSAGE:
Sorry about such the delay in journaling...I am not updating as often but usually have alot to report when I do!!! I keepin' my mommy & daddy on their toes.... especially now that I am "2"!!!!
I had a wonderful birthday and a fun party with many new toys..Even new Elmo things...think I have 'em all now! HA! I was at therapy on my birthday and(drum roll)......
I walked all by myself with a mini walker. YEAH....gotta love those milestones. Now for the past two weeks I have been workin on walking behind things or using my walker. My AFO's (orthotics) have really helped my ankles be more stable & I have takin' a liking to them. I even try to help put them on...but have not tried to lick the velcro yet like my pal Josie suggests to get them off! I love walking around my crib and along furniture. Hopefully not too long before I am free and can go as I please, that's if I don't get tangled in my tubes first. Heck , I'll be doing jump rope before ya know it! Reached another milestone over the weekend......(one more drum roll please) I have the concept of crawling down too! I can do about 4-6 strides with my legs/arms before I tire and squish....right on my face!
I have really stepped up my eating over the last few weeks! Starting to feed myself with spoon too! But also in throwing mode, my milk cup, crackers, you name it...whateveris on my tray! Looking forward to getting weighed next week at my 2 yr. check-up. Hoping to be over that 20# mark. Not long before I can finally turn my carseat around and see who's drivin the bus!
Another first over the weekend......got my haircut! I did really great and sat still with the cape on. I looked adorable! I've got more curls in the back now!
My social calendar has been quite full this past month!!
Spent the day with my pall Ella on the the fourth of July, parade watching & swimmimg!! Than a week later I met my awesome cousin Betty (who by the way....loves my Elmo songs too) who came with my Great Grama Lou (PS....HAPPY BIRTHDAY TO YOU TODAY) and Grammy Diane. Later in the week I met alot of other family for the first time that came from all over. Then I joined the girls at my Auntie Erin's for the girls weekend 2006. WHEW! What a party, I did some entertaining & was in my element! Love showing off & being silly!! My family showed me so much love when they were here,thank-you!!! I love all of you too! My Grammy Diane & cousin Sharmon even swam in MY pool! HA! Then this past weekend our friends Dan, Leslie & Ian who's also from Montana came for a visit! Thanks to all for coming to see me!
With my social calendar so filled up it was difficult to squeeze in the normal routine stuff...therapy apts, dr apts & sleep but I managed to get a few shut eye & some appointments in. Now this week finally my shcedule is normalizing somewhat!
In the middle of all this craziness I ended up in the ER three weeks ago with a bad bad case of stomach bug & diahrea. I had this for four long days and the only thing I did was sleep in between bedding changes & baths!! UGH!
Of course they needed blood to check for dehydration & blood counts. I continue to live up to my name..."a hard poke"...third times a charm but in the scalp. Everything turned out okay and no hospital stays...
I also went for a sleep study again last week. I had one last year and they are trying to see what my oxygen needs are while I am sleeping! WHAT A JOKE! I had to be there at 9 pm, I played and entertained over & over & over & over until I finally fell asleep at 12:30 AM and when I was woken up to have things put back on my face that I ripped off earlier in the night...I was MAD! So, they called off the study and my mommy & I made a leisurely stroll back home at 2:30 am! What a long week that made for...my nights & days were totally mixed up and sleep cycles were off! No more sleep studies for a really long time if I have anything to do with it!
Had another hearing test couple weeks ago.....seemed a little better than last time but they think my tubes were plugged. However, I am responding better again this week! YEAH!
On another round of antibiotics for nasal gunk and difficulty breathing due to congestion. Also, got some steroid nasal spray which seems to be doing the trick. Hoping to get rid of the booger sucker upper again soon!
August brings a lighter schedule...another f/u with the ENT and hearing test. Seeing my pediatrician (Dr. M) for 2 year checkup next week and then off to the cabin in Wisconsin with the Persaks! And no Kim this month, who is my teacher from the school.
HEY...one last thing before I end another chapter. The annual Down Syndrome BUDDY WALK is approaching us October 1st. Be looking for some more info regarding this soon. The brochures just came out and myself, my daddy & my aunt Erin are on the brochure...a picture taken from last years walk! COOL! I'll be signing autographs at the Mall of America Rotunda soon! HA! Wink-Wink!!!
LOVES, HUGS, KISSES, & SMILES!
Carly
"Where there is great love there are always miracles."
- Willa Cather
Thursday, July 20, 2006 10:16 PM CDT
SAY IT'S MY BIRTHDAY!!!!!!!!
HAPPY BIRTHDAY TO MEEEE!!!!
YEP, the big "2"! I have been acting my age too! It's been an exciting couple weeks, I'll sign in tomorrow & let ya know all about it!
Happy Birthday to me and Happy Birhday to my new cousin Lane....born today and happy birthday my awesome cousin Betty!
We shall talk soon!!!!!
LOVES, HUGS, KISSES & SMILES!!!
The Birthday Girl....Princess Carly May
Monday, June 26, 2006 8:38 PM CDT
Okay so I am a few days later than I said I would update...sorry...me been busy,lots to talk about!! Just want to say thanks for continuing to check up on me. It continues to mean so much & I can't believe it has been almost two years. WOW!
Here goes...
> At the end of May saw Dr. Lohr (cardiologist) for my routine 6 month post surgery follow up. Had the usual...echo, x-ray, EKG. As I get older I do not like to sit quite as still so it is entertaining to see what my mommy and the nurses do to distract me. Dance around, sing along with elmo, make funny noises...HA,but I know better! Dr. Lohr said everything looked great from a cardiac standpoint. EKG, Echo and the devices in my heart looked good. She made no restrictions on my intake of fluids and no more heart meds/diuretics. However, my chest x-ray showed a fluffy white area in the right lower lobe. She was not sure if this was something new or if it had been there. So the plan was to go on a stronger anti-biotic to possibly help clear the lung stuff up but also I was still having alot of yucky green drainage (sorry for the visual)from the adenoidectomy and the antibiotic I was on was not cuttin it! We will see Dr. Lohr & Dr. Bass again in December for a one year checkup. At that time if still on O2, may likely do a heart catheterization to once again measure pressure in lungs!
>Later that same day, we met another new Dr....Dr. Kahn. He is a GI guy and we love him...he was great! He listened to all my mommy's concerns and addressed everything she brought to him. With my history of having yucky bacterial overgrowth in my gut and being on so many antibiotics Dr. Kahn put me on acidophilus, which is an over the counter vitamin like powder to help wih good intestinal health. Also, he put me back on a reflux medicine...prilosec. Most importantly he wanted my growth to get going....because at this point I need growth to grow new lung tissue & get off this O2. So he increased my feedings by 30 10 ach meal over a couple weeks so I could transition more easily. He said the priority is getting off the oxygen first then the G-tube comes later. He wants to really focus on me gaining weight over the next six months, then see where we are with the need for oxygen. He commented that I would probably not eat or drink much by mouth since I was getting fed more by g-tube..but that has not seemed to stop me. I have gone through a major growth spurt the last several weeks. I have been eating solids so well...It's been GREAT! Once Dr. Kahn feels my weight is adequate in aprox. six months then he said we could play around with decreasing my g-tube feedings to see if I eat/drink more on my own and eventually get rid of this tummy tube.
>My follow up with Dr. Rimmell/audiology in early June was somewhat frustrating. I was continuing to have some drainage from my nose so back on a second round of strong antibiotic. My tubes looked in place but lots of fluid in each ear, so therefore my hearing test was not as impressive as previous tests. I will be having hearing tested again in July.
>My physical therapist-Brian and mommy and daddy decided it was in my best interest to get fitted for orthotics for my feet to help with walking because with this recent growth spurt that I have been in, I want to walk more (with assistance of course) and now I am pulling myself up to stand on several things and even can take a few steps creeping sideways along railings, furniture, etc.. Ya-hoo! Clap...I love clapping and celebrating every little milestone! So getting molds of my feet with me very upset & eating plaster while the orthotist & my mommy were bending and holding my knees & ankles in place was an experience!!!! (It might have been easier if they had an extra set of hands....ha ha...just kidding Brian, can't let ya off that easy, since after all it was your day off ya know, I luv ya anyway) So this Wednesday I will be sportin a new pair of orthotics and stylin shoes. I hope I like them, but give me just a little time and I will figure out how to get them off!!! HEE-HEE!
>Two weeks ago I had a follow up chest x-ray with my pediatrician, Dr. M. He was going to send my x-ray to Dr. Shreve(pulmonologist) to review all and make a decision if these most recent x-rays are showing anything new.
>Fun outings and activities that I have done over the past couple weeks: went to the lake in Wisconsin with the Persaks, went to the zoo on Fathers day.....I llllooovvveee animals. Really sharpening up on my animal signs.HA! Went to the horse races and saw the pretty horses and my daddy lose a few bucks. Love playing with my neighbor dog Baire and nothing tops my new swimming pool. Had a play date with my girlfriends and their siblings. Also attended a couple picnics with the Down Syndrome Assoc. and our south of the river parent group.
>Have been enjoying seeing my auntie Erin more since she is back in MN and great aunt joy and Katie are contiuing to watch me a couple days per week while my mommy and daddy work for my wardrobe...HA!
>My teeth...UGH! I may hold the record for the longest teething period..age 18 months to 5 years of age! No just kidding but wow they seem to be errupting lately. My mommy & I caught a summer cold over the weekend so I am not totally myself but hoping to bounce back soon!
>Looking forward to the next few weeks...will be seeing my grammy Diane and a whole bunch of family coming to visit from all over..it should be a party!
More updates sooner than later next time. Signing off for now and wishing you all good dreams!
LOVES, HUGS, KISSES, & SMILES!!!
Miss Carly
Thursday, June 22, 2006 9:52 PM CDT
Updates coming tomorrow...promise!!!!!!
Love Carly
Monday, May 22, 2006 9:40 PM CDT
Sorry....Sorry...Sorry....
For the week delayed update on my surgery. All went well & I came home late in the afternoon that same day. Kinda had a rough time coming off the anasthesia but I did good. My adenoids were taking up alomst my whole airway. The doc did say my vocal cords looked good but my voice is still immature due to having a larynx (ie voice box) of a 6 month old. After all I am still a tiny little thing and that will get bigger as I do....and one day...hoping to yelp REALLY LOUD! Did pretty well until Friday then the river started flowing....out of my nose that is!!! Ha...not quite shedding these meds....back on a strong antibiotic to help with my snotty nose. Last couple nights have made it rough breathing & getting a sound sleep with being so congested. Unfortunately the "booger sucker upper" is getting lots of use again!! UGH! Hope this starts to clear real soon!!! If it doesn't go away...my mommy may check to see if I have some allergies??? I see the ENT doc next week for a post op check up & to retest the hearing to make sure the tubes look good!
Another busy week.... Wednesday I see Dr. Lohr for my 6 month post op heart checkup & Dr. Kahn for GI checkup. Finally rid of my vitamin pee (lasix) over the weekend! Yippy!!!!!!
Looking forward to another trip to my pals Max & Kates cabin for the weekend! Better start packin now....we usually bring the house!
Some good news....even with all this congestion there have been times I have had no O2 on & kept my sats above 90, even during my session of PT last week!
Hope all is well with everyone & thanks so much for the continued support and love, it means so much and makes the rough days sweeter!!!
LOVES, HUGS, KISSES & SMILES!!!
CARLY
Sunday, May 14, 2006 7:28 PM CDT
Hi All!!!
Just a quick note on the latest! Sorry for not updating sooner....the clock seems to tick faster some days! Ha! I am going in for surgery tomorrow at 7:45 am at the U to have my adenoids removed, second set of tubes put in & also a larngoscopy (sp?)to look at my vocal cords. I am hoping to also come home tomorrow if my breathing is good! Removing the adenoids is supposed to make the tubes more successful the second time around & hopefully help with some of my upper airway congestion & breathing too, I hope! At the last exam with my ENT there was lots of fluid in my ears & my hearing was a little worse. This should help control that.
I also had my swallow study which showed I am still aspirating on thin liquids. On the sixth swallow it went right into my lungs. However, I seemed to do well with thickened liquids & solids which for now I am sticking with my current diet.....thickened pediasure & some solids!
I finally reached the 18 pound mark at my pre-op visit with Dr. Morkeberg on Friday. YA-HOO!
Have been taking some steps with help lately....still think I am going to skip this crawlin' business & just walk! 4 more doses of Lasix and 2 more weeks of Zithromax and the only thing I will need is my vitamin & facial (neb)....Yeah.....no more diuretic! I did have to go on an antibiotic the last 12 days cause I got my mommys cold and just could not get rid of the snot in my nose!! Much better now!
Well I better get going to bed...gotta another big day ahead of me! Gotta say hello to my friends in the OR! I will try and post an update tomorrow and hopefully all goes well. Say a prayer!!!
LOVES, HUGS, KISSES & SMILES,
CARLY MAY
And....HAPPY MOTHERS DAY!! to all you moms
A Mother's Prayer
__________________
Lord Strengthen Me
When Little Hands
Reach Out To Me
With Small Demands
__________________
Help Me Respond
With Soft Replies
And May They See
Love In My Eyes
Saturday, April 22, 2006 9:54 PM CDT
HI YA EVERYONE!
I LOVE.... Bunnies! But during the photo shoot bunny had enuf of my daddy and tried to have his finger for dinner...oops not a carrot stick! Drew blood and all! Darn...no free pictures out of the deal.Sure glad it was not my finger! I am glad to say dad is recovering nicely and no booster shots required!
Hope you all had a wonderful Easter! We had a wonderful time at Joy & Lesa's.....so much fun I forgot how to nap...and I was the energizer bunny. My daddy had his hands full since my mommy was in bed sick all day! My mommy and me seem to be giving each other the same cold back & forth for the past couple weeks. I came down with a cold again on Wednesday. Have needed more O2 & more nebs with being sick...but hoping only temporary. We also needed to brush the dust off the "booger sucker upper"...I needed to breathe again...if ya know what I mean.Also, my teeth are sprouting. Finally I am getting my front chompers...top & bottom. I won't let them near me now long enough for them to count!
MILESTONE met this week: Figured out how to go from lying on my tummy to sitting up. YES! Indeed its the incorrect way...doing the splits and then walking my hands up until I am sitting very proud!I know it looks painful but I do not seem to care! Now working on going from sitting to laying....still trying to muster up enough courage. I have done it a couple times and feel safer on a softer surface like a bed...but once I get myself sitting up in my crib.....mmmmmmmmm, now what do I do????? Sit there & play until somebody comes to check on me! UH-HAH!Mommy said I will just have to learn how to get myself down since I got myself up and it is supposed to be nighty-nite time! HA!
Lung update: Saw Dr. Shreve yesterday (pulmonologist) and I am on the track to be med free soon (I hope)! No more Aldactone (diuretic)_FIRST TIME EVER, Lasix (diuretic, aka VITAMIN PEE) now just 1x/day for two weeks then 1x/every other day for two weeks then done as long as breathing stays good, stop profalactic (sp??)Zithromax June 1st and 1/2 baby aspirin will be stopped mid May since it will be 6 months post from the heart surgery. So, the only thing left is my vitamin and (aka daily facials)nebulizer treatments. The make-shift Harris pharmacy is dwindling...yeah! Target just may go out of business!Doc says my lungs sound good even for being sick. I also had a chest x-ray and blood drawn to check blood gases and electrolytes...have not heard anything either way. The plan is as follows: will be seeing the ENT/audiologist next week to discuss new PE tubes/having adenoids removed. I will be having another sleep study in about 4-6 weeks. Then I will be seeing Dr. Lohr (cardiology)end of May for 6 month post op EKG, x-ray & Echo and likely will schedule heart cath to do some measuring in the lungs. With all the upcoming tests....hoping & praying for a better timeline on getting off this tube. With or without meds to be determined......Counting the days until my tube burning bash!
I also weighed in at 17#10oz. & 28 inches! Still kinda tiny and my mommy has some concerns about my lack of weight gain.....we will be pursuing that this week with doctor morkeberg and GI specialist.
Well gotta get back to countin' ZZZZZZ's! Hopin for a stroll or a swing tomorrow if I am feeling better!
LOVES, HUGS, KISSES, & SMILES!!!
MISS CARLY MAY
"If you didn't get all the things you wanted, you can still be grateful for all the things you didn't want that you didn't get." - Michael Nolan
Monday, April 10, 2006 9:25 PM CDT
HEY ALL:
I love this weather & am eagerly waiting for the Easter Bunny! Have been out for strolls in my stroller the past two days....love it! Went to the park both days with my mommy & Great Aunt Joy...went down the slide.WWWWWeeeeee!Also been lovin' my swing! (As you can see from the pics..to be posted soon)
Saw the eye doctor today. Sher said my vision is improving with each visit but still have a need for glasses. Still tend to cross my eyes some for close-up & have an astigmatism in my left eye. But the doc says things look great with my glasses. Have to return in five months for another check-up and oh, fun-fun.... I get to have my eyes dilated!
I see my lung doctor next week.....
I get my easter/spring pics taken on Friday...looking forward to it. My mommy told me the photographer has a real live bunny. That bunny better start hoppin....
Going to my Great Aunt Joys & cousing Lesa's house for Easter and to enjoy a fabulous brunch!
My Vegas experience was great!!!! I already want to go back. Traveling was a breeze with the oxygen and breathing...but my mommy & daddy learned a lesson....I get my own seat next time! HA! Also, we were gone five days....7 bags later and once again most of it was mine! I loved meeting my Great Uncle Pat & Great Aunt Julie & seeing the rest of my crazy family! However, I am in the stage of being a mama's girl and if she leaves....it is quite the crisis. I get so sad & cry....it breaks my Grammy's heart and REALLY hard on my mommy! My Grammy was nice enough to give my mommy & daddy some quality sleep and wake up with me several mornings. However, my mommy had to stumble out of bed several times each morning after a fun night out in "Sin-City" to let me know she was there but I continued to demand she wake up for the day before I was happy! My mommy is hoping this stage passes soon even though cuddlin is so fun!!
I also got sick the week after we got back. Went to the Dr and had some virus. My WBC count was elevated & really bad fever for about two days which then turned into a cold and now I continue to be teething.....I think I might be up to 4-5! Wow...but notta one tooth in the front top or bottom!But overall feeling much better! Back to playing hard!
Well.....gotta get back to sleep....
HAPPY EASTER!!
LOVES, HUGS, KISSES & SMILES!!
Miss Carly
Tuesday, March 21, 2006 11:12 PM CST
Happy Spring! Happy 20 month old birhday to ME!
Hi All!
So sorry for the major delay in journaling! Here's an update on the happenings in the Harris household!
~ UUGGHH! We had another visit from the very friendly Lakeville paramedics/ambulance & policemen. I rolled my way through a barcade of pillows & off my mommy & daddys bed. I was fast! I think my mommy underestimated my ability to get out of sitting and roll when I want! My mommy was close by getting ready in the am. After crying for several minutes I recovered just fine. However, being it was my first tumble the paramedics had to tend to my mommy more than me! By the time they arrived I was smiling & waving at them welcoming them in and my mommy was trying to control herself!! Lesson learned: NO MORE CARLY JUMPIN ON THE BED!
~I continue to get my monthly synagis shots, one in each thigh $1200 per leg! I will get my last one in April! But, hey it has been well worth it! I have not been sick all winter!
~I continue PT, OT & speech therapy on Wed. & Frid and my teacher from the school comes out on Wed. mornings. Busy...Busy on my mommys days off! I still do not like being on my tummy for very long and do not want to crawl or attempt to get in that position. I prefer standing & possibly soon will be fitted for orthotics for my feet to give me more stability and maybe lead to walking...we will update ya later on that!
~My mommy is back to work consistently 3 days per week. My Great Aunt joy continues to be entertained by me on Mondays. Now, I have a new partner in crime coming to my house on Tuedays & Thursdays. Her name is Katie & she is very very good to me. It has taken a few days getting used to but we are warming up to each other nicely. What do you expect from a 20 month old?? Yep, a little stranger anxiety! Katie has had very much experience with children/adults with Down Syndrome & other special needs. She is an angel sent to us, we did not even have to seek her out! It is truly amazing how well it has worked out!
~I saw my ENT Dr and had a hearing test the beginning of March. One PE tube has fallen out and the other one is plugged & not doing anything. However, my hearing continues to test at borderline normal. The plan is to see both the audiologist and ENT Dr at the end of April. At that time I will likely be scheduled for surgery again to have new PE tubes put back in & also have my adenoids removed. Maybe....that would help my breathing!!!???
~Some fun things that I have done recently.....got together with my girls...I'll have my daddy post a picture next time of all of us. Emily, Ava, Ella & myself had a great time. Our birthdays are all within 5 months of each other! Also, went to the Mall of America & rode on the carouselwith my buds Max & Kate! Didn't like it too much...it reminded me of my pony at home and I still am afraid of it!! We will try it again some time! Tomorrow....will be an exciting new adventure for me & the fam! I am heading to "Sin City" on my first airplane ride to visit family. My Grammy Diane is meeting us there to babysit & we are staying at my aunt erin's & uncle Perry's. Also coming is our friend Cody and my great aunt & uncle from Seattle - Pat & Julie - whom I have never met! It should be exciting, interesting & we are all hoping for a safe flight with oxygen/breathing and stuff! Once again I have the majority of luggage and my mommy & daddy are stuck with two small bags! I will update ya on the trip when we return!
~ Also, met some other family members recently from Butte. My cousins Chelsea & Stephanie and their fiance'& boyfriend were traveling through MNPLS and had a layover. We had a quick visit but it so nice to meet more family. Hoping to get to Butte this summer to meet the rest of my crazy clan!
~Upcoming appointments & lung status: I see the eye dr on April 10th to recheck my eyes & see how the glasses are working. I went a few days with out them cause I managed to throw them & they broke. But, the good engineer my daddy is..he fixed them and didn't even have to use duck tape! He's GOOD! I see the pulmonologist on april 21st to determine a plan. Possibly will have another sleep study but not likely until after I get my adenoids out cause that could affect my breathing & need for o2. I am continuing to grow & hoping at a good pace that will satisfy my GI dr. I have to get on the scale tomorrow & give her a report! I'll let ya know what I am weighing in at! But if I enjoy any buffets in Vegas I will be sure to make my dr proud! However, eating is a whole other issue...I will update you all on that next time!
Anyways...I better get sleepin! Got a busy day tomorrow, gotta go help fly the plane! Thanks for your continued encouragement, love & support! Hopefully soon I will be planning that tube burning party! And you all will be invited!
For Now.... LOVES, HUGS, KISSES & SMILES!! (and a little luck for Vegas)
Carly May
Wednesday, March 8, 2006 8:44 PM CST
I KNOW, I KNOW, I KNOW....NEW UPDATES COMING SOON!!!!
PROMISE......
LOVE YA...
CARLY
(I'LL GET ON MY DADDY TO GET SOME NEW PICS TOO)
Saturday, February 11, 2006 9:16 PM CST
HAPPY HEARTS DAY!!!
I know my heart is happy.....
I saw Dr. Lohr on Wednesday for a 3-month check-up. Great news! Everything looks fab! They couldn't even find a drop of blood through the holes that were plugged with the devices! All sealed good! Still unable to measure any pulmonary pressures because of this! Also, over the last several appointments Dr. Lohr was somewhat concerned about the thickening of my right ventricle wall...and currently it has thinned out! yeah! This could be an indicator of non-elevated pulmonary pressures. When the wall is thickened it could mean high pressures. There is no way now to accurately get numbers unless I have another diagnostic heart catheterization done.....so for now we will wait until May to reassess if needed! Positive thoughts that we will not even have to go down that road becasue I will have already had by tube burning party!!!! HA!
Kind of a bummer this week....the PE tube in my right ear came loose. It is still in my ear but will eventually fall out. One morning my ear was bloody so had to go see my ENT doctor. He gave some drops that I have to use 3 times per day to fight any infection and have to go back to see him in about 2 months. He said the right tube is loose and not in correct position. The left tube is plugged and will likely fall out! The doc said this is common when teething but it should not affect my hearing. May have to have new ones put in down the road!
The new rule in the Harris household is: INDEPENDENCE! Yep, my way or the highway! I like to do it all by myself! New tricks include: I can now pick up my own sippy cup and drink INDEPENDENTLY! I like to eat all by myself...can you say Miss Independent. Yep...typical 18 month old! However, I still have some difficulty getting smaller or slippery food items to my mouth...not real efficient yet but practice makes pefect! I am ssssoooo messy! But, that's the way it should be! My mom's new rule.....no clothes on while I eat! But.......they better watch out cause I may just pull on my g-tube if I am not diggin my menu options!
With Valentines day almost upon us just wanted to share with you things I LOVE: MY VERY OWN MOMMY & DADDY, elmo everything, my Icy(kinda like a pacifier but better, oh it feels so good on my gums), giving kisses (wet ones), milk (its vanilla flavored..yum), my super duper awesome family...YOU ALL ROCK!, my medical team, my therapists at CTC, stroller rides, my friends, playing silly games and making funny faces, ripping off my toe O2 sensor or my oxygen to either get someones attention or when they say NO (sidenote: some mornings it looks like I just ended a boxing match with all the tape on my face and the tape around my ankle to keep my sock in place), baths, toys, music, car rides, learning new sign language, my room, my animals, the ball pit at home & at CTC, and I LOVE BEING ALIVE and LOVE BEING LOVED! As I continue to grow and get stronger & healthier everyday my spirit & loving personality continues to grow & make it self known more & more!
Well, gotta go! Also, congrats to my cousin Bryce....he just won Montana State Wrestling Championship!!! YA-HOO!
EXTRA LOVES, HUGS, KISSES & SMILES!
carly
PS... From March 7-14th it is Congenital Heart Defect Awareness Week!! There is a link below if anyone interested in learning more about it! Thanks!
Sunday, January 29, 2006 11:03 PM CST
Hey Everyone:
Sorry for the delay in journaling! I have been very happy and healthy these last few weeks! Unlike my mommy and daddy who both came down with colds I seemed to have missed it so far! Which is amazing because they just can't quite kissin and huggin all over me!
About a week ago, I gave my mommy a BIG scare! She had put me to sleep in my crib and about 1/2 hour later she came to check on me beacuse I wasn't falling asleep....I was just chillin...but not fussin.....and she found me with blood all over my pj'a and sheets! UUUGGGHHH! The lights came on and my pj's were ripped off me very fast! My mommy was trying to figure out where all this blood was coming from??? After checking every orfice, opening, and inch of my body she came to the conclusion that it was my gums and another tooth broke through! But...still perplexed we all went back to sleep! The next morning as I proceded to stick my tongue out....there it was .....a BIG bite out of my tongue. The one sharp canine I have caused all that blood and now has formed a canker-sore like blister! Ouch! I didn't eat as well last week but better now!
On Friday I made a trip to see Dr. Rosen who is a very nice man. He is a neonatologist who specializes in children with Down Syndrome. I first met him when I was born and staying in the NICU resort & spa!! (Side note: Can ya believe that was 11/2 yrs ago? wow time flies!!!)Anyways, he is retiring and we wanted to say on more hello and get a check-up! He thought I was doing just marvelous compared to a year ago when I saw him! He told me to keep up the good work and goal this next year: Nutrition ~ put on pounds,gain weight, and grow big! However, he was thrilled with how well I was doing despite all my medical detours this past year! I am weighing in at 16#12oz which is on the 20th percentile for Down Syndrome growth chart! For height, well I am already at a disadvantage cause I got my mommy and daddys genes and you all know...they are not tall! So, I am on the 5th percentile for height on DS charts! Dr. Rosen said that is okay and I'll just be short! HA!
I am continuing to guzzle my yummy milk from all different cups....Goal for 2007: to be G-Tube free!!!! I continue to need some assistance burping because of my nissen. So sometimes during and always after my meals I am vented through my g-tube! I smile in curiosity sometimes when I hear this funny noise...air escaping from my belly!!! AAAHHH, what relief! Yum-had pizza the other night....love it!!
Contuing to learn new signs and do new tricks: top favorites this week! I like to sign da da (even though I can say it), music & dog! Starting to point to my daddy and mommy's nose & ear when asked!! That's a fun game!
Got to spend an afternoon at my mommies work this week. Played in her office while she tried to manage me and patients.....I seemed to have fun but the chaos kinda made my mommy crazy!
I better get back to countin' sheep! Great Aunt Joy comin to jam with me tomorrow! Look for new pics soon!
LOVES, HUGS, KISSES & SMILES!!!!
Miss Carly May
Wednesday, January 11, 2006 8:21 PM CST
HOWDY PARTNERS!
Just a brief update on the last week's happenings! I had my ears cleaned & checked last Friday and my tubes are open & in place! Best news of all.... the audiologist finally was able to get some good results on my hearing test. I have hearing in the normal range for speech & language development. I may have a little trouble hearing real low tones but not nothin' to be worried about at this point. So, we will no longer pursue the option of hearing aides! I have to go back and get my hearing checked in 1 1/2 and 3 months! Yeah......
Also, saw Dr. Shreve about my lungs on Monday. He said my lungs sound great...no crackles...the best he has heard
yet! Since there is no easy way to measure my pulmonary pressures now he would like to see if I can grow out of this oxygen in the next two-three months. If I cannot and things do not seem to be improving then we will consider meds to help me along!! Also, he would also then like to start weaning down on my make-shift pharmacy I have at home, especially the diuretics! So.....pray for lots of growth, big strong lungs and less oxygen need!!!
I am going to get weighed tomorrow! I am getting heavier and finally some rolls around my knees and my thighs are getting chunky!
New trick I learned over the weekend....I can stand and hold onto something...and then....I muster up enough courage...let go......and boom.....I land on my butt...then I give myself a round of applause...then sign for more!!! It is quite fun!!
Looking forward to next Monday..... I will be seeing alot of my friends~ old & new! Our DS group that meets is having a potluck and we usually have a great turn out! Looking forward to playing with all of them!
Anyways.... I am quite tired and I think I am wearing out my mommy! Two days in a row - only taking a 30 minute nap! Just doesn't cut it....but I have all this energy and just want to play...play...play!!! Nighty-Nite!
LOVES, HUGS, KISSES & SMILES!
Carly
Wednesday, January 4, 2006 10:06 PM CST
HAPPY HAPPY NEW YEAR TO YOU ALL!!!!
If staying out of the hospital new years day is any indication of what the upcoming year has in store for me then things are looking up! Last new years day I was in the infamous ER and looked what the last year brought! So, we are hopeful that it will be smooth sailing with only itty bitty waves this year!! Yeah!
Well, I had to end 2005 with at least reaching one milestone that my parents thought I would have done so many moons or months ago. But finally......I have a tooth! Nope, not in the front! But, on the top in the back! So, I received my x-mas gift a little late! And, boy...it's a dagger! But, I continue to drool like a sieve and chomp on anything...they may all continue to come at once!
Things have been going pretty well....getting back into some sort of schedule again unlike the holiday season! I did get a case of the sniffles, runny nose, runny eyes & cold stuff but holding up pretty good! I played with my buddy Ella and we had lots of fun. She might have to teach me a thing or two on how to get around a little better! I am staying put on my bum unless I fall or get help out of sitting! But were working on it! Also, getting my legs underneath me and pushing up on my arms all at the same time!!! Whew..it is hard work! But my therapists and mommy & daddy are back at it trying to get me movin' & scootin more! I also had my first session with my new teacher Kim! She is very nice and fun to play with...I think we hit it off....I do like her long hair!!Yeah...something to pull....just she wait, I practice on my mommy all the time!
Oh, couple exciting moments...Great Aunt Joy and daddy pulled out my g-tube all in the same week! Hope they are not trying to out do each other!!!HA! Daddy accidently pulled it out while we all were at the dr's office in the waiting room. And I had just ate>>>>UGH! Then to make things worse. Daddy and the nurse were about to weigh me and diaper off....and I kept peeing and peeing and peeing....all over the tray I was laying in and all over the clothes I was wearing. I guess the lasix (diuretic) is still working good! Ya think I was deprived of clothing options cause yep' nothing to change in to! So, back in hospital pj's one more time for the ride home! But Dr. S. (GI) felt I was doing well and changed me to pediasure which is 30 calories to add on some pounds...hoping someday to drink regular whole milk! But, I have options.....yum! Vanilla, strawberry,& orange cream for special occasions! I also gained some nice weight from 2 week prior...I am on the right track!
This friday I am seeing Dr. Preciado (ENT) to have an ear check-up & clean out the ears!!!Oh what fun that is! Then I will have my hearing tested again. Still not sure if I require hearing aids but I seem to do pretty well responding to voices & noises! I continue to use more vowel sounds, preferably; da da, ba ba, ka ka, and various other noises I make that even my parents can't imitate! Eating & drinking fairly well...usually 2-3 ounces from my big girl cup and some meals I eat a good amount and other meals...well...I am in control! Enough Said!
Next Monday, I am seeing Dr. Shreve (pulmonologist) about thw lungs. Things to be discussed: 1. How to get this tube off my face ASAP 2. Same as #1 3. More of the same!!! Hopefully we can explore the option of using Viagra and try weening off some of my meds....keep your fingers crossed!!! I will give an update next week! For now...hope you all have a wonderful new year and remember.... hug someone you love and tell them that they are appreciated and loved!
LOVES, HUGS, KISSES & SMILES!
Miss Carly
I wish you humor and a twinkle in the eye.
I wish you sunshine on your path and storms
to season your journey. - Robert Ward
Saturday, December 24, 2005 9:36 PM CST
Merry Merry Christmas!
Hoping you all are in good company and surrounded by people that you love and that love you, casue I know I am!
Sorry, about the delay in journaling! Wow! This time of year is busy busy!!! And according to my last journal entry I must not have been a good napper! My mommy has been busy wrapping lots of presents with "winnie the pooh" wrapping and I don't think they are for my daddy! While she is doing that my daddy has been busy building an extension on our house for all the extra toys I am getting (so my mommy says)! Santa has not even arrived and wow you should see all the presents with my name on them! My mommy and daddy have said I can be spoiled this Christmas after everything I have been through this past year! This Christmas is very special to all of us in that I am home for the first time! Last Christmas I was in the hospital after having surgery for my Nissen. We remember as if it was yesterday but yet try to forget....for several days I had to have a syringe and a tube that was connected to my g-tube suspended over my crib to keep a constant air way open to vent my stomach beacause with the restriction in my esophagus I was not able to burp! Look how far I have come in one year.....I am starting to be able to burp and release gas through my mouth but still have to be vented through my G-tube each meal! I also am eating better than ever before! Also, recently I have been feeding myself. My coordination is improving and I am managing to get small pieces of food into my mouth easier...and I am proud!! Some days I love to eat or drink or both other days one or the other or neither....but oh well....typical kid stuff I guess. People tell my parents not to stress about it.....it will come!
Also, since I last wrote I saw my cardiologist (Dr. Lohr) for a check-up after my surgery. Everything looked beautiful where the repairs took place. No signs of leakage and everything in place. EKG looked good as did my echo. The wall in my heart still looked thick but better than before. We talked about starting Viagra but agreed to have my pulmonologist (Dr. Shreve) on board. I see hom after the new year. That can hopefully expedite me getting off this oxygen. It kinda acts a dilator of the vessels in my lungs...again, I told my daddy HANDS OFF! Regardless...Viagra or not my doctors are hopeful that worst case would be me off the O2 six months from my surgery....which would be May! We will have a tube removal party!!!! I also had a nutritional consult and they feel I am gaining my lost weight back. I see my GI dr. next week and will start on Pediasure and get off this infant formula! Pediasure is 30 calories and more for toddlers, the formula I am on now is 24 calories. That way I can consume less and focus on eating more solids and hopfully start to transition gaining weight from eating more solids and not havng to rely on higher caloric formula/milk! The ultimate goal would be able to tak everthing by mouth and not have to use the G-tube. However, this typically stays in about one year from the time I stop using it....just in case! After all, it is a surgical procedure to put back in!
I also returned back to therapy two times per week and my therapists were happy that I did not lose much ground! I also said good bye to my friend & therapist Doona. She will be missed but looking forward to getting to know my new teacher...Kim! As of yesterday...it has been six weeks from my surgery so I can be picked up from underneath my arms once again and my daddy gave me a horsy ride!!!Yeah, what fun!! I also continue to get my monthly (expensive) synagis shots to help me from not getting sick with RSV! So far so good!!!
Now, a note from my mommy:
As this year comes to end & we reflect back to everything we have been through in 2005, we realize how truly blessed we are and what amazing strides Carly has made! She has given us joy like we have never known and taught us about what is truly important in life! We pray and hope for all the children that are in the hospital this year have a speedy recovery and find peace in their own little way! We wish them a Merry Christmas....and a Very Merry Christmas goes out to all of you! Thank you again for all of your love & support through out this journey.....it means so so much! Well, gotta go finish the extension on the house before morning!(just kidding) We thank Santa (or whomever is responsible)for all the wonderful & gracious gifts that we have received this year! We received many early Christmas presents this year that are far more important than anything that can sit underneath a tree!!! Those are only gifts to make it extra special! Also, today was special in that we spent it with family and friends and looking forawrd to an EXTRA special Christmas next year...hoping to go home to Montana to see my extended family!
Take care and promise, promise, promise....new pics coming this week. My daddy had a short work week this last week and has been kinda busy! Be safe and love to you all!
LOVES, HUGS, KISSES & SMILES,
Miss Carly May
Wednesday, December 14, 2005 3:56 PM CST
SORRY, sorry, SORRY.....updates & pictures arriving soon!!!! My mommy won't let me journal until I take a nap....you all might be waiting awhile! HA HA! Talk soon!!!
Saturday, December 3, 2005 2:12 PM CST
OKAY...READY...SING WITH ME..... ALL I WANT FOR CHRISTMAS IS MY TWO FRONT TEETH (OR ANY TEETH)!!!!! I DIDN'T THINK IT WAS POSSIBLE TO STICK MY WHOLE FIST IN MY MOUTH BUT SOMEHOW I SEEM TO MANAGE TRYING TO COMFORT MY GUMS. THE DROOLING IS NON STOP AND I LIKE TO MAKE FUNNY NOISES WITH EXTRA SLOBBER! hee-hee! BUT WITH ALL THESE SECRECTIONS I HAVE MORE DIFFICULTY SWALLOWING THEM! I HAVE WOKEN UP A COUPLE TIMES DURING THE NIGHT CRYING CAUSE MY GUMS HURT AND WHEN MY MOMMY OR DADDY COME IN TO COMFORT ME I START GIGGLING AND WANT TO PLAY! MOM SAYS...NOT HAPPENIN'! SO I GET A LITTLE MOTRIN OR TYLENOL AND MY ICE CUBE SUCKER (THANK GOD FOR THAT)AND BACK TO NIGHTY-NITE! THE PAST COUPLE DAYS I HAVE NOT WANTED TO EAT OR DRINK AS WELL AS I HAVE BEEN....MAYBE IT CAUSE OF MY TEETH! so...AGAIN.....SING WITH ME! ALL I WANT FOR CHRISTMAS IS MY TWO FRONT TEETH!!!
SINCE I LAST WROTE I DID START TO DRINK SOME MILK BUT REALLY HAVE TO THICKEN IT UP AND ONLY WANT TO DRINK ABOUT 2 OUNCES! THANK GOD FOR THAT G-TUBE AGAIN BUT HOPEFULLY ONE DAY SOON TO GET RID OF YET ANOTHER TUBE. HAD A LITTLE G-TUBE MALFUNCTION THE OTHER DAY...THAT'S WHAT HAPPENS WHEN I PULL ON IT....DADDY CALLED MOMMY WHILE SHE WAS OUT SHOPPING AND SAID HURRY HOME...MILK IS SPEWING OUT, I NEED HELP CHANGING IT! GOOD THING MOMMY WAS ONLY A FEW MINUTES AWAY!
I WILL BE HAVING A NUTRITIONAL CONSULTATION WITH THE DIETICIAN COMING UP TO GO OVER MY EATING AND DRINKING NEEDS IN ORDER FOR ME TO GET ALL THE YUMMY FOOD GROUPS AND GROW ADEQUATELY! REALLY STRIVING TO HIT THAT 20# MARK SO I CAN TURN AROUND AND FACE FORWARD IN MY CAR SEAT AND FINALLY SEE WHERE THE HECK WERE GOIN! I LIKE TO KEEP TABS ON THAT SORT OF THING....NO MORE TRIPS TO THE HOSPITAL! yeah~ I ALSO WILL BE SEEING DR. LOHR ON WEDNESDAY FOR MY POST-OP CHECKUP! WILL HAVE AN ECHO AND HOPEFULLY SEE WHERE MY PULMONARY PRESSURES MEASURE AND DISCUSS MEDS FOR TREATING THESE LUNGS! MY OXYGEN NEEDS STILL ARE UP & DOWN! SOMETIMES I CAN BE OFF THE O2 AND MY SATS ARE GOOD AND OTHER TIMES I STILL NEED IT! WE ARE TRYING TO BE PATIENT....MY PULMONOLOGIST SAID 3-6 MONTHS AFTER THE SURGERY...THAT WOULD PUT US AT FEB-MAY! THE OTHER THING THAT MY MOMMY IS GOING TO PURSUE IS GETTING A RE-CHECK WITH DR. SCHWARZENBERG (MY GI DR) SOONER THAN THE END OF THIS MONTH! ONE: I THINK ITS TIME FOR ANOTHER SWALLOW STUDY TO SEE HOW I AM MANAGING LIQUIDS, ETC... AND SECOND: TO DISCUSS THIS AWFUL GAS PROBLEM THAT I HAVE HAD THAT DOES NOT SEEM TO GO AWAY! I GET VENTED THROUGH MY G-TUBE SEVERAL TIMES PER DAY AND ALL THIS GAS/AIR ESCAPES AND IT CAN BE SEVERAL HOURS AFTER EATING, RIGHT AFTER I EAT, RIGHT BEFORE I EAT, WHEN I WAKE UP IN THE MORNING! I KNOW US BABIES GET GAS AND IT IS HARD FOR ME TO BURP IT OUT CAUSE OF MY NISSEN BUT IT SEEMS A LITTLE EXCESSIVE! ALSO, I CONTINUE TO GET FULL REALLY FAST WHEN EATING AND DRINKING! LOTS OF TIMES WHEN I DRINK I GULP AIR BECASUE YOU CAN LITERALLY HEAR THE AIT TRAVELING DOWN MY ESOPHAGUS INTO MY BELLY! MY MOMMY SAYS IT SOUNDS HOLLOW AND THIS BIG AIR BUBBLE IS TRYING TO MAKE ITS WAY DOWN & OUT! WHEN VENTED...IT'S ALMOST LIKE A BALLON IS DEFLATING! NOT SURE WHAT ALL OF THIS MEANS BUT MY MOMMY'S GUT TELLS HER THERE IS SOMETHING CAUSING THIS! IF YOU ALL REMEMBER AT ONE POINT I WAS TREATED FOR BACTERIAL OVERGROWTH IN MY INTESTINAL TRACT AND THEY GAVE ME A VERY STRONG ANTIBIOTIC....NOT SURE IF THIS IS IT AGAIN...BUT HOPING TO GET TO THE BOTTOM OF IT!
WELL, NOW THREE WEEKS OUT FROM SURGERY AND HAVE BEEN PLAYING HARD SOME DAYS! CAN'T WAIT FOR SANTA CLAUS CAUSE SOME OF MY TOYS ARE BORED! I AM STARING TO TALK MORE....THINGS LIKE DA DA, NA NA, BA BA BUT STILL NO MORE MA MA! MY TEACHER DONNA WAS OVER LAST WEEK AND I SAID HER NAME:DA NA! SHE WAS VERRY HAPPY! HA-HA! ALSO, BACK TO THERAPY THIS WEEK....LOOKING FORWARD TO SEEING ALL MY FRIENDS BUT WILL HAVE TO TAKE IT DOWN A NOTCH FOR ABOUT TWO-THREE MORE WEEKS! WELL, BETTER GO NAP, WE GOING TO MY MOMMY'S WORK CHRISTMAS PARTY, GETTING ALL DRESSED UP!!! STAY WARM AND DRINK LOTS OF COCOA!
LoVeS, hUgS, kIsSeS, & sMiLeS!!!
Miss Carly
Little note on growth: (oh and how we have grown)
It is easy enough to be pleasant,
When life flows by like a song,
But the person worth while is the one who can smile,
When everything goes dead wrong.
For the test of the heart is trouble,
And it always comes with the years,
And the smile that is worth the praises of earth
Is the smile that shines through tears.
~ Ella Wheeler Wilcox
Thursday, November 24, 2005 8:24 PM CST
Happy Thanksgiving....Gobble...Gobble....Gobble! I was able to enjoy some mashers and turkey! Yum!
A note from my mommy and daddy:
As this wonderful Thanksgiving is winding down and my daughter is still awake & wanting the festivities of the day to continue, I ponder on the joy we feel on this day. Last Thanksgiving we were dealing with trying to keep Carly upright in some fashion due to her severe reflux issue and aspiration problem (which at that time we did not know was occuring)! Thank you GOD for her nissen!We are so very grateful & thankful for everyday we have with our daughter, Carly. We feel truly blessed and could never express the thanks we feel for all of the wonderful medical care that has saved Carly's life...not once but many times! She is truly a miracle and has a will to live like no other! She has taught us so much in her short life and one of those things is...thankful for everyday we have together! Also, we are truly blessed to have such supportive, loving & caring family and friends. You all have been with us along this long journey which has been very dark and daunting at times! But like Carly's style.....she (we) always prevail! We appreciate your concern, thoughts, prayers, love and support more than you all know! We are also thankful for the smiles and the goofy faces Carly gives us at any moment! A smile to melt one's heart!!!! We are also very thankful for the strides our daughter has made with her development! At times, it can seem slow but Carly has a tendency to do things at her own pace and her own way! And that is okay! We are also so very thankful for the wonderful and awesome families that we have met through our journey that have endured many of the same issues! We also want to keep all the other children and their families in our heart & prayers that are currently in the hospital or battling their own set of health problems. May they find comfort in some way!!
A word from Miss Carly:
I am getting stonger each day......starting to prop up on my arms more while on my tummy. My incision is healing nicely. I have been eating like a champ....LOVE fruit amongst other "big people" food. But now I could careless if I drink any milk. Not sure what happened but before my surgery I loved to drink and did not eat much, now its the opposite! Love to eat but no drink! I am baffling them once again! Just wanted to mix it up a little, so when I see my speech therapist I can throw her for a curve! Have been doing some sucks out of my bear cup with the straw! My newest and funnest trick is that I can shake my bootey with the rest of them! Any music, my dancing elmo, or my musical toys and "I get rockin'"! Wishing you all a great turkey day!!!!
Loves, Hugs, Kisses & Smiles,
Miss Carly May
Tuesday, November 15, 2005 8:32 AM CST
Celebration time!!!!!!!!!!!
I am home!!!!!! I came home yesterday afternoon at about four. Can ya believe it? Three days later.....I was very happy to see all my toys and my room! Of course I just picked up where I left off....playin' away, banging on things, rollin' over and (this is for all my therapists) I am even sitting on my own (a little more wobbly but didn't lose it)and I even tried to push myself up while on my tummy. OUCH! I found out real fast that I can't do that for awhile! Okay....okay....that will have to wait! It will be kinda hard cause nobody can pick me up from underneath the arms for six weeks....so lots of scoopin!
Anyways, I even drank some milk last night and ate some food! Then grammy, mommy and daddy celebrated with some champagne and that was it......I wanted it! (pictures to follow). Then I fell asleep at about seven and up at eight. Exactly what I needed....a good night sleep in my own crib! I only woke up one time and needed tylenol and an ice cube for my darn gums. This no teeth thing seems to be the most annoying right now!
Well, I have to get my monthly synagis shot on Thursday and see Dr. M (pediatrician) on Friday for a check-up and Dr. Lohr in two weeks for a follow-up and an echo. All should go well......
Also, my Great Aunt Linda is coming to visit me on Thursday.....we will have a blast playin.
Well, gotta go finish my breakfast, just wanted to let you all know I am finally home!!! Thanks always for checking in on me! Keep paddlin'!!!
LOVES, HUGS, KISSES & SMILES!
Carly
Monday, November 14, 2005 11:10 AM CST
One step closer to going home....can ya believe it!
Yesterday morning I was moved out of ICU to a regular room. No more fevers and I am peeing out all that extra fluid! I did get a little morphine yesterday morning because they pulled out my arterial line in my groin and that hurts! So I was pretty groggy and out of it most of the afternoon. Last night I started to perk up and even was able to crack a little smile and play with my toys....back to banging things off the side of my crib! HA! Also, last night I was still having a hard time coughing and clearing my throat so they had to suction me out! Next time...I will cough!!! My oxygen is also down....I am back to where I was before going in for surgery. Huge gains there....as of Saturday I was on 3 liters. I also was able to roll over and sleep on my side...it felt so good!!
This morning they pulled out my chest tube...yeah! Now when I sit up I don't have this big plastic thing poking into me!! Much more comfortable... I had a sponge bath and feelin all refreshed. I am getting back to my ole' self more and more each day! Back to some of my old tricks! I was up all morning and now takin a snooze. I only have on IV line in my foot and that may come at today too. The only thing that were trying to sort out is my potassium was really low yesterday.....so they made me eat a bunch of bananas! No..just kidding, I got it in the liquid form this time! Then it was really high...trying to find that happy medium. If that gets straightened out I may go home this afternoon or tomorrow! WoW! Back to my own crib, can't wait!
Hope you all are doing well and looking forward to seeing ya all again soon and for those of you that I have not met...hope we meet soon! Thanks again for all the love and prayers and well wishes! It means alot!
LOVES, HUGS, KISSES & SMILES...
Miss Carly
Saturday, November 12, 2005 7:02 PM CST
Hello All!
Another day almost down and making slow, steady progress!
Good news....I was able to muster up enough oomph and get off the ventilator last night at about seven. It's kinda hard cause they don't give ya any sedation or much pain meds so ya fight and breathe on your own. Once I showed em' I was able to do so they yanked er' out! They also took the line out of my neck! I was pretty agitated but got morphine then I was feelin' okay! Overall, relieved to get rid of that tube...
During the night I did spike a fever three times to 102 but with tylenol and a few cold towels on my head I was able to get rid of that! No sign of infection but these dang gums & chompers are likely contributing! I had my last dose of morphine at seven this morning and now just taking tylenol with codeine. This afternoon I needed a little something to help me sleep, I was getting a little restless. My mommy, daddy and grammy Diane was able to hold me but with the stiff chest tube still in it gets a little uncomfortable after awhile! But it felt good to cuddle! Also, my chest x-ray showed extra fluid on my lungs and had to have extra doses of diuretics. My chubby cheeks are getting smaller! My vitamin pee is working! Ha! Buddy Jim came and looked at my heart with echo and the device is sitting beautifully....nothing leaking through!
With my fever and wet lungs they decided tio keep me in ICU an extra day but hoping to be moved to the regular unit tomorrow! I have been more awake today but still in & out and kinda groggy! My saving grace has been my ice cube sucker (i have a little mesh bag that I suck on with ice cubes in it), it has felt ooohhhh so good on my gums!
Hoping to feel better tomorrow and maybe sit up a little more....just got done with a sponge bath and now falling asleep! Good night and sweet dreams!
LOVES, HUGS, KISSES, & SMILES!
Miss Carly
Friday, November 11, 2005 4:15 PM CST
Hi All!
Well, mark another one up on the wall! More champagne all around! (and for us little ones: spiked milk!) Here's to my amazing surgeons, doctors and cardio team who worked very diligently to successfully close my (much talked about and very famous) VSD! AND NO HEART/LUNG BYPASS!
First of all, I got to tell ya.....I awoke this morning to a suppository! My mommy wanted me all cleaned out...what a surprise that was! And then.... a BATH WITH PINK SOAP AT 4:30 AM! You have got to be kidding me! But I managed to smile and splash once I started waking up! We were off in the SS Odyssey and arrived to the U at 6 am! My daddy was able to carry me to the OR and help me put the mask on to go to sleep! Nighty - Nighty!
At aprox. 9:45 am Dr. Foker started in on trying to suture the VSD (this attempt included piercing the heart with a needle and trying to stitch around the hole! After 2 hours of trying.....no luck! The hole was too deep in and not close enough to the edge! So, they called in back-up who was Dr. Bass (he did Carly's heart cath)to help try to place the Amplatzer occluder device. This is the same device I have in my ASD! This time they pierced through my right ventricle...it's absolute amazing what can be done when the heart reamains beating! With steady & guiding hands of my friendly echo tech Jim, my loving & fabulous cardiologist Dr. Lohr doing echos to help guide the cath wires....Dr. Bass & Dr. Foker were able to thread the device and have it sit perfectly flush up against the wall of my heart...not on try # 1, or try #2, but try #3 was a success!!!!! (The four hands surrounding that pink heart on my homepage represents these four incredible people)!
All was done at about 1:15 and then it took about an hour for Dr. Foker to suture of my chest! He was also able to shave a little bit of bone off my sternum. I had a little bony prominence that protruded out a bit! Finally....my mommy and daddy got to se me at about 2:30! My mommy told the doctor she needs her heart fixed now....after almost going into failure...waiting and anticipating the outcome of this!! Yeah!!! All better now!
I am stable and doing well, hoping to get this dang tube out of my mouth and hoping to be breathing on my own! Still quite sedated but I have started to move some! They will also take out my catheter and the line in my neck! The doctors said it is quite high up and if I start moving my neck I will force it out...and we don't want that!
Hoping to blow this popsicle stand once and for all....in about 4-5 days! I shall keep ya posted and when I can talk better....I have lots more to say about this day!
We have so, so much to be thankful for and I am a fighter to say the least....I'll be back at it very soon!
Our prayers have been answered and now...onto treating these lungs!!
Ending on another good note....I said MAMA yesterday for the first time...talk about bringing tears to my mommy's eyes!
Thanks for all the wonderful support & prayers, the vibes were felt!
LOVES, HUGS, KISSES & SMILES!
Carly May (free from the ugly dreaded VSD)
Thursday, November 10, 2005 9:36 PM CST
Whew, what a day! I was finally off to sleep until rudely awaken a little bit ago beacuse I had to bathe not once but twice with special pink soap to make sure my skin was good & clean for mornin'!
My pre-op started at one, six hours later I finally arrived home about seven! Spoke with Dr. Foker, had an echo, EKG, and went through quite an ordeal giving up any blood! Literally after about 8-10 pokes in all extremities they brought in the the best and went for a vein in the scalp...finally! So far things look good unless some crazy infection comes back which I doubt and then they would postpone surgery...but I have been healthy without any symptoms besides my dang teeth (or lack of) givin' me a little fever and yucky diapers!
We have to check in at 6 am and surgery is set to start at 8 am. Depending on how long it takes to find vein/artery access and what procedure Dr. Foker will use will depend on the time it takes. At minimum 3-4 hours.....my mommy and daddy are hoping to have updates every two hours!
Thanks for all of your prayers, love & support! It means so much! I have many guardian angels from up above lookin over me tomorrow, especially my Grandpa Dave,our friend Kim and and most recently Mary Dawn! It will all be good and turn out with good results! Looking forward to update you all with good news! For now, I will keep on paddlin!
LOVES, HUGS, KISSES, & SMILES!
MISS CARLY MAY
HOPE IS THE THING WITH FEATHERS, THAT PERCHES IN THE SOUL -AND SINGS THE TUNE WITHOUT WORDS, AND NEVER STOPS - AT ALL!
Wednesday, November 9, 2005 9:16 PM CST
Hey Everyone!
I will give more of an update tomorrow evening after my pre-op! Headed to the U in the afternoon for blood work, echo, EKG, x-ray, and to pee in a cup (ha, just kiddin) but they will have to collect it somehow! You know, all that real fun routine things one has to prepare for heart surgery! Then I will be seeing auntie Erin & my grammy Diane again...she could not stay away! It will be great to see her even though it is under these circumstances. But her support is so much appreciated! Thank you for all the kinds words, prayers, thoughts, good vibes or whatever you want to send! It means so so much! We will talk real soon..
HOPE IS THE THING WITH FEATHERS, THAT PERCHES IN THE SOUL -AND SINGS THE TUNE WITHOUT WORDS, AND NEVER STOPS - AT ALL!
Loves, Hugs, Kisses, and Smiles!
Carly May
Monday, October 31, 2005 7:54 PM CST
HAPPY HALLOWEEN!!!!
Just a quick update.....
We have the final word from Dr. Fokers office that we are set for November 11th for surgery. I have an echo and pre-op visit with Dr. Lohr next Wednesday and then headed up to the U to have the rest of my pre-op and get blood drawn on Thursday...which is always a daunting task! This week I am going to see ENT and audiology to have my ears cleaned and my hearing tested! Hoping to pass with flying colors!Also, I am due for my re-evaluation with Donna and the team (teachers/therapists that come to my home through the school district). My other therapy will be on hold for awhile.....I will miss them but hopin' to be a ROCK STAR when I return, SOON I HOPE! Miss all you and thanks for all you do! Also, I will be meeting another great aunt from Montana. My grammy Diane's sister Linda is coming to visit me after my surgery. I might still be in the hospital but looking forward to another playmate!
Otherwise, had a great Halloween with Aunt Joy....my costume this year was a witch....but I just could not find my broom and for some reason I just did not want to keep my pointy hat on.....oh well, my mommy and daddy thought I was quite cute anyway! Be looking for pictures!!!
Some good news....my saturation levels without oxygen have not been as low the past week. My doctor says its a sign of lung improvement.....really praying for larger gains once I am on meds to help my lungs and the hole is closed in my heart. Thanks to Auntie Erin and Great Aunt Joy for watchin me this past week. I even had a sleep over with Joy in my room and she only had to wake up two times. Thank you for relieving my mommy and daddy of their duties for one night!
Anyways....I will talk with all of you later! Gotta go back to dreamin' of all the Halloween candy my mommy and daddy will let me gum on tomorrow...HA! HA!
LOVES, HUGS, KISSES, and SMILES!
THE CUTEST LITTLE WITCH....Carly May
Monday, October 24, 2005 8:32 PM CDT
BOO! Sorry I have been a ghost the last few weeks and not kept up on the journaling! But, once again the days seem to go so quickly with play time, eating, drs appointments, therapy, outings with mom & dad, oh yeah nap time! I was waiting to get all my dr. apts in before we got the final word on surgery vs. no surgery for my heart before I relayed to all of you!
After an agonizing decision and seeking many, many opinions my mommy and daddy are deciding to go ahead with surgery to have the holes in my little heart repaired. It has not been easy because not all parties have agreed! Unfortunately, none of us can predict the future! Therefore, my mommy and daddy felt the risk of doing open heart surgery out-weighs the unknown of the future & possible long-term risk of irreversible lung damage if we do nothing! All the drs say there is no right answer but feel comfortable one way or the other and go with it! We feel we can do something about it now and then get on to treating the lungs!
We are currently looking at two dates: November 11th or November 22nd. We have two dates because Dr. Foker had surgery himself and wants to make sure he is healthy!! I am quite sure it will be the 11th, which is only two & 1/2 weeks away! UGH! Dr. Foker is performing several surgeries on children the 1st week of November that have been waiting for him from out of state! We will know foresure next week on what date it will be!
Dr. Foker has three possible ways of closing my VSD'S. It will all depend on the actual location and size! They have a fairly good idea baed on all my past echos and heart cath's but ya never know until they get in there! But, WOW! The biggest VSD is aprox. 5 milimeters by 7-8 milimeters and there are possibly 2-3 others that may or may not be closed! The first way would be a grand slam if it can be done because it would not require me going on heart/lung bypass....but, Dr. Foker has performed this procedure 4 times in his 40 year career! They all have been successful but that just tells us once again how wonderful a surgeon Dr. Foker is....thinking outside the box and trying to avoid bypass if possible! If the VSD is close enough to the wall of my heart he may be able to pierce my heart with a needle while it is still beating and suture the hole shut with stitches! The second way would be to insert the same device they used to close my ASD, but my VSD hole has to be far enough away from the outside wall of my heart or the device could erode away with time.The third way would be to put me on bypass which means a machine would do all the work for my heart and lungs! The longer I am on bypass (if needed)the longer the recovery and complications! My cardiologist said I will likely have a longer recovery than most babies that have a VSD closure because of my lung disease. Also, if I am put on bypass...that makes pulmonary hypertension worse initially. I will probably be on the vetilator for a few days longer to help my lungs along! They are talking to start me on Viagra shortly after my surgey and possibly some other medications to start treatment on my lungs! I am looking at aprox. a 7-10 day hospital stay but ya never know! I think my buddy Ella has the record.....4 days and she was outta there after her open heart surgery! Her & I will have to go out for decaf coffee and chat over all her tricks! Also, my friend Jack & Natalie can provide some insight on this subject! Love all you guys!
Anyways.....I have just been a pistol these last few days....so my mommy and daddy say! Bundle of energy, quite the personality, and so much fun! Everyday, I am doing something new it seems like! Hope ya like the new pics....we had a blast at the Buddy Walk! FYI.....about 4,000 people attended in the Twin Cities Buddy Walk and in combination with the Duluth Buddy Walk....$100,000 was raised! WOW!
I am now the big 15 months and due for some more shots! Goin' to see Dr. Morkeberg on Wednesday along with my pals at therapy!
Also, everyone sing a Happy Birthday to my daddy tomorrow.... the 25th! I won't tell how old he is!!
Promise to update you all next week with the final word and until then......
THESE THINGS I WARMLY WISH FOR YOU- SOMEONE TO LOVE, SOME WORK TO DO, A BIT O'SUN, A BIT O'CHEER, AND A GUARDIAN ANGEL ALWAYS NEAR.
Loves, Hugs, Kisses, & Smiles!
The "OH SO BIG" Miss Carly May
Thursday, October 6, 2005 11:17 PM CDT
BRRRRRRRRRRRRRRR! IT'S COLD!
HEY ALL! A WHOPPIN' 80 DEGRESS AND 40 DEGREES ALL IN ONE WEEK! I WENT TO WEARING MY SUMMER DUDS TO BUNDLING UP IN MY FAUX FURS!
SORRY I HAVEN'T JOURNALED IN A WHILE....BUSY, BUSY, BUSY! HAD SUCH A GREAT TIME MEETING AND SPENDING TIME WITH MY EXTRA SPECIAL GREAT GRAMA LOU! IT WAS SAD TO SEE HER AND MY GRAMMY DIANE GO BACK TO MONTANA BUT WILL CHERISH THE TIME SPENT TOGETHER! AS YOU CAN SEE FROM THE PICTURES WE GOT ALONG QUITE WELL! MY GRAMMY DIANE TOOK GOOD CARE OF ME SEVERAL DAYS WHILE MY MOMMY AND DADDY WORKED! I EVEN LET THEM GO ON AN OVER NIGHT DATE WITHOUT ME FOR THE FIRST TIME--I THINK THEY ONLY CALLED 3-4 TIMES TO CHECK IN ON ME! AUNTIE ERIN & GRAMA GOT TO EXPERIENCE WHAT A NIGHT IS LIKE IN THE HARRIS HOUSEHOLD... EVERY TIME I ROLL OVER MY OXYGEN PRONGS COME OUT OF MY NOSE AND THE ALARM SOUNDS....UP & DOWN, UP & DOWN, UP & DOWN! YEP..GOOD EXERCISE, ESPECIALLY WHEN THEIR HALF ASLEEP! HA!
UPDATES:
LET ME FIRST START BY THANKING MY AUNTIE ERIN, GRAMMY DIANE, AND GREAT AUNT JOY FOR SUPPORTING AND WALKING WITH ME AT MY FIRST "BUDDY WALK"! WHAT A JOYOUS EVENT! THANK YOU SO SO MUCH TO ALL MY FRIENDS AND FAMILY OUT THERE WHO DONATED MONEY TO SUCH A WONDERFUL CAUSE! IT IS TRULY HEARTFELT AND IT MEANS SO MUCH FOR YOUR SUPPORT! WOULD LOVE TO HAVE YOU ALL JOIN US NEXT YEAR! BY THE WAY, OCTOBER IS DOWN SYNDROME AWARENESS MONTH..WHAT A WAY TO KICK IT OFF! ALSO, FOR THOSE OF YOU THAT HAVE DONATED TO CARINGBRIDGE...THANK YOU FOR YOUR KINDNESS...WITHOUT YOU & THEM I WOULD NOT BE ABLE TO TELL MY STORY IN SUCH AN EASY WAY!
SECONDLY....WHAT A DIFFERENCE A YEAR MAKES! CAN YOU BELIEVE ONE YEAR AGO THIS WEEK I WAS ARRIVING HOME FOR THE FIRST TIME FROM THE NICU RESORT & SPA! WOW! WHAT A RIDE THIS LAST YEAR HAS BEEN...I WILL NOT REMEMBER ANY OF IT (I THINK) SO I AM GLAD I CAN LOOK BACK ON MY JOURNALING & HAVE MANY UH-HAH MOMENTS! SO...THAT'S HOW I GOT THAT SCAR!AND...I DID WHAT? I HAVE COME SSSSSSOOOOOOOO FAR AND MY MOMMY AND DADDY COULD NOT BE PROUDER (SO THEY TELL ME)!
OKAY...OKAY...FOR THE HEART UPDATE! EVERYTHING IS GOING WELL WITH THE DEVICE PLACEMENT..I TAKE MY DAILY DOSE OF 1/2 BABY ASPIRIN TO HELP PREVENT CLOTTING! BUT NOTHIN' HAS KEPT ME DOWN! HOWEVER....MY TEAM OF CARDIOLOGISTS/SURGEONS AT THE U MET LAST FRIDAY AND DISCUSSED THE NUMBERS/DATA THAT WAS GATHERED FROM THE HEART CATH AND THE RESULT BEING....ALL BUT ONE THOUGHT MY VSD'S NEEDED TO BE CLOSED VIA OPEN HEART SURGERY TO PREVENT IRREVERSIBLE LUNG DAMAGE! SO, BACK TO DR. SINGH TODAY AT CHILDRENS HOSPITAL FOR HIS OPINION....AND YEP....NOT ALL PARTIES EVER AGREE! HE FEELS OPEN HEART SURGERY IS NOT WARRANTED AND ONLY TIME WILL CLOSE THE VSD AND REGENERATE NEW LUNG TISSUE. HE FELT THE PRESSURES IN MY LUNGS WERE NOT HIGH ENOUGH AND THE HOLE IN MY HEART WAS NOT BIG ENOUGH AND THERE IS A SMALL RISK FOR PERMANANT LUNG DAMAGE! SO...WHAT DO WE DO? WHAT PATH DO WE TAKE? WHO CAN WE TRUST? UUUUUGGGGHHHHHH! NO DECISIONS ARE GOING TO BE MADE OVERNIGHT! NEXT WEEK WE WILL BE MEETING WITH MY PULMONOLOGISTS AT THE U (DR. CORNFIELD) & AT CHILDRENS (DR. SHREVE) TO GET THEIR TAKE ON THIS QAUNDRY! ALSO, WE ARE DISCUSSING SURGERY OPTIONS WITH THE SURGEON WHO HAS SEEN MY INSIDES MORE TIMES THAN I CARE TO COUNT...(DR. FOKER)! THEN THE FOLLOWING WEEK WE SHOULD HEAR FROM DR. SINGH AGAIN....HE IS GOING TO PRESENT MY CASE....ME...TO HIS TEAM OF CARDIOLOGISTS/SURGEONS TO HAVE ANOTHER TAKE ON THIS ALREADY COMPLICATED TWIST OF OPINIONS! IF AFTER ALL I DO END UP WITH HAVING SURGERY....IT WILL LIKELY BE SCHEDULED EARLY NOVEMBER! HOP ON THE PRAYER CHAIN ONCE AGAIN...HOPING FOR THE RIGHT OUTCOME ONE WAY OR ANOTHER! TO BE CONTINUED......
AS FAR AS MY DEVELOPMENT....I DO WONDERFUL THINGS EVERY DAY THAT AMAZA MY FAMILY! MY FOOD PREFERENCES NOW INCLUDE FISHY CRACKERS, CHEERIOS, FRUIT/VEGGIE PUFFS, GRAHAM CRACKERS, TURKEY LEGS (THANKS GRAMA, FEELS GREAT ON THE GUMS), MASHED POTATOES WITH GRAVY AND DICED TURKEY, REALLY ANYTHING THAT I CAN GUM & CHEW! LOVE THE TEXTURE! SO MUCH MORE TASTY & FUN BESIDES THAT BABY FOOD, EVEN THOUGH THEY STILL TRY TO SNEAK THAT IN! STILL DRINKING SOME BUT NOT ALL FROM MY CUP! I EVEN HAD APRICOT NECTAR WITH A STRAW IN SPEECH THERAPY, WORKIN ON MY SUCKING! YUMMY! I LOVE TO MIMIC OTHERS AND MY ATTENTION SPAN IS GREAT!MY SIGN LANGUAGE AND COMMUICATION IS GETTING STRONGER EVERYDAY AND BECOMING MORE CONSISTENT! MY VOCALIZING IS GETTING THERE! CAN YOU BELIEVE IT...TODAY I SAID.....DADADABA....TWO TIMES EVEN! I CONTINUE TO PLAY HARD AND LOVE MUSIC AND MARACAS AMONGST OTHER FAVORITES! WE CONTINUE TO LIVE FOR TODAY AND ENJOY EVERY MOMENT....LIFE IS GREAT IN MY WORLD (EXCEPT WHEN I GET GASSY OR MY GUMS HURT), I HAVE A SMILE ON MY FACE MOST OF THE TIME AND MY RESILIENCY KEEPS PROVING ITSELF OVER AND OVER AND OVER!
UNITL NEXT TIME....
LOVES, HUGS, KISSES, & SMILES!
MISS CARLY MAY
Saturday, September 24, 2005 5:19 PM CDT
GOOD DAY!
I ARRIVED YESTERDAY BACK IN THE COMFORTS OF MY OWN HOME! IN RECORD TIME AS WELL...HOME BY NOON! I HAD A BUSY MORNING WITH A CHEST X-RAY, EKG, & AND ECHO TO SEE HOW THE DEVICE WAS SITTING! ALL IS WELL AND THINGS LOOK GOOD! IT'S AMAZING WHAT THEY CAN DO...NOW I HAVE THIS THING IN MY HEART JUST LIKE THAT! THE ONLY THING I HAVE TO DO IS TAKE BABY ASPIRIN FOR THE NEXT SIX MONTHS TO MINIMIZE ANY CLOTTING WHERE THE DEVICE WAS PLACED.
WELL, I SLEPT THROUGH THE NIGHT THANKS TO A LITTLE MORPHINE TO KEEP ME SETTLED CAUSE I HAD TO SATY STRAPPED TO THAT BOARD UNTIL ABOUT 1 AM...THANKS TO MY NICE NURSE SHE RELIEVED ME OF THAT!
YESTERDAY AND TODAY I AM NOT QUITE MYSELF YET BUT GETTING THERE....OF ALL THINGS MY GUMS ARE BOTHERING ME THE MOST...STILL NO TEETH! ALSO,I SEEM TO HAVE A BELLY ACHE...WHICH LEADS TO SOME YUCKY DIAPERS...NOT SURE WHAT THE CAUSE OF THIS IS BUT HOPING IT WILL PASS SOON! I HAVE BEEN SLEEPING MORE THAN USUAL AND BEEN A LITTLE MORE CRANKY & IRRITABLE. BUT I BOUNCE BACK QUICKLY...LOOKING FORWARD TO SEEING MY PALS THIS WEEK...BRIAN, DAWN x 2, & DONNA! WELL, ITS NEARING DINNER TIME AND I HAVE TO GET MY DIAPER CHANGED...THANKS TO ALL OF YOU FOR YOUR PRAYERS AND WARM, FUZZY THOUGHTS...I FELT THEM AND IT WORKED!
LOVES, HUGS, KISSES, AND SMILES!
MISS CARLY MAY
Thursday, September 22, 2005 7:21 PM CDT
Whew! I made it through without too much of an incident! But I have a reputation to keep up around here and have to make the doctors earn their money! It has been quite a day! I arrived at about seven am and after trying on all the hospital attire (pictures to follow)and bouncin' around my crib (ya think I had a very large cup of espresso)I went to dream land at about nine am. My mommy and daddy were there to assist the gas guy and they were the last ones I saw. Then my mommy and daddy waited and waited and waited and then waited some more.....originally the doctor said the whole procedure was to take about 21/2 hours. Four hours later, a little after one, they came out to give us an update that they were able to close the ASD, otherwise called the PFO. This took three hours alone and another hour to find artery and vein access. Yep, IV access is almost impossible these days! Then they tried to close the VSD with the device. However....no luck unfortunately. My heart is not positioned like most people; therefore, it made it even more challenging and the VSD's are in a position that the doctor felt he was crossing the line of being safe! One good thing was that the data supports less shunting than my last cath procedure! So now what we ask? The cardiology team will review the data next Friday and decide if open heart surgery to close the VSD's is worth it! My mommy and daddy think not and already have an appointment with Dr. Singh at Childrens Hospital to discuss the data and options! I will also be following up with my pulmonologist to get a plan for treating my lungs MUCH MORE aggressively. My mommy and daddy will go to the end of the earth to find an answer (if there is one)!
So anyway....back to the recovery room (its about three pm)!
I am straped to a board because I have lines in each atery/vien in my groin area where they inserted these big sheaths that helped guide the catheter and protect the artery. They proceed to pull my ventilator out so I can breathe on my own.I was mad...movin and kickin'.....and WHAMO! The line in my left leg gets pulled out like it's not supposed to and I start to bleed and it forms a clot. That leds to no pulse or blood flow to my leg. So they started a Heparin drip to thin my blood and kept doing a doppler to my foot to find a pulse! Needless to say that held up things a bit....most importantly from seeing my mommy and daddy. My mommy said she was pacin'...finally, a little after four pm I got a kiss on each cheek. After a little while they were starting to get a pulse and I was moved to ICU for closer monitoring. They also had to put a line in my jugular vein in my neck and now my neck is twice the size...they are monitoring that closely as well...but all should be okay... Not sure if I am blowin' this popsicle stand tomorrow. Having an EKG and an ECHO.
I am still kinda groggy and out of it but hoping to get some sleep...things are starting to come around...I have a much better pulse and should stop the heparin at about 10 so they can pull this other line out of my leg and get unstrapped from this crazy uncomfortable board! I will give ya an update tomorrow once I know more..
LOVES, HUGS, KISSES, and SMILES!
MISS CARLY
Wednesday, September 21, 2005 8:53 PM CDT
HEY ALL!
JUST A QUICK NOTE TO SAY HELLO AND GOOD NITE! I JUST WAS AWAKENED BY MY MOMMY & DADDY CAUSE MY G-TUBE LEAKED WHILE I WAS SLEEPIN' ON MY TUMMY! SO, A JAMMY CHANGE AND NOW ALL CLEANED UP....READY FOR A BIG DAY TOMORROW! HOPEFULLY THIS WILL BE THE LAST OF ANY HEART SURGERY/PROCEDURE & THEY WILL FIX ALL MY HOLES GOOD AS NEW! ON TO BIGGER & BETTER THINGS...HA!
IT WILL BE AN EARLY MORNING...I HAVE TO ARRIVE AT THE HOSPITAL BY 6:30ISH AND SCHEDULED FOR 9:30ISH. NOTHIN' TO EAT OR DRINK AFTER 3 AM. I SENSED THAT SO I ATE AND DRANK QUITE WELL FOR DINNER. MY THERAPISTS WOULD BE PROUD...HI GUYS! ANYWAYS, HEART CATH SHOULD TAKE A COUPLE HOURS! I WILL SEND A SHOUT OUT TO ALL OF YOU ONCE I AM BACK ON MY FEET TOMORROW!
SAY A PRAYER AND CROSS YOUR FINGERS & TOES THAT ALL GOES WELL AND EVERYTHING GOES AS PLANNED: CLOSING BOTH MY VSD & ASD. IF ANYONE IS CURIOUS YOU CAN GO TO AMPLATZER.COM AND LOOK AT THE DEVICE THEY WILL BE INSERTING INTO THE HOLES. IT'S THE ASD DEVICE WHICH IS NOT YET APPROVED BY THE FDA FOR THE VSD. THAT IS WHY WE HAD TO GET A COMPASSIONATE APPROVAL FROM THEM IN ORDER TO USE IT! WHAT A PROCESS!
BEEN HAVING A BLAST WITH MY GRAMMY DIANE AND GREAT GRAMMY LOU....I THINK I AM WEARING THEM OUT...IT'S ALL GOOD THOUGH!
ANYWAYS...WE WILL TALK VERY SOON...I PROMISE TO BE BRAVE & STRONG ONCE AGAIN!
BIG LOVES, BIG HUGS, BIG KISSES, AND BIG SMILES!
MISS CARLY MAY
"GIVE THANKS FOR UNKNOWN BLESSINGS ALREADY ON THEIR WAY"
- NATIVE AMERICAN SAYING
Saturday, September 10, 2005 10:26 AM CDT
Hey All,
YEP, that's right I am sitting all by myself as you can see from the pictures!!! Yeah, and boy am I proud! As promised here's a rundown of my latest "TOP TEN TRICKS":
10. I can make my Elmo talk over & over & over & over & over...I just look around and grin to see who all I am annoying.....thanks Dawn! HA-Ha!
9. Chew on my fingers with my hand upside down to not only satisfy my sore gums but to pull the prongs out of my nose to get attention!
8. I can stand all by myself at my play table! Oh, and I like to rock n' roll, back and forth! Standing, sitting, lying on my back, lying on my stomach...I don't even need music! I want rock n'roll right outta here, it's kinda funny!
7. I can wave Bye-Bye, give a high five and say NO by shaking my head! I think it is quite humorous when it is time to eat!
6. I am able to do some sign language: I can ask for more and say mama and dada. Continuing to master those and work on others!
5. I can make my Great Aunt Joy vvveeerrryyyy tired by the end of her shift. With new tricks daily....they better watch out, it only gets better! You all better start wearing your runnin shoes!
4. I can Guzzle milk from my "big girl" cup.....SOY that is! My mama says it stinks real bad but I enjoy it! Now eating on the other hand...I do that how I want, when I want, what I want! I may just drive my mommy and daddy nuts, oh well...that's what being a little one is all about!
3. I have a way of rolling over where my arm looks like it is getting wrapped around my body...they say I look like a contortionist! HA..whatever works!
2. I finally have control over several things in the Harris Househould and taking full advantage of that!I have that look in my eye and grin to back it up! My mommy thinks I may be headed for the terrible two's already... NO, I am really not that bad...it's just that I have been down for way too long! Can ya blame me!
1. I have a way of making the cutest darn facial expressions...and I do have many that just makes my family and friends laugh and love me more and more each day!
THE END
For further update on stuff: I paid a visit to the eye doctor last week and this week I have started to wear spectacles. Yep, I am having a hard time seeing things close up! Right now, my eye muscles are workin' overtime (especially the left eye) to help me focus on things close up and it makes my left eye cross inward a bit. These glasses will hopefully help correct the problem in the next three months, when I have to return for a follow-up. At that time, my prescription will probably change for the better! Anyways, I am one stylin' chick...my specs are pink! I am getting used to them but not without a struggle..I like to pull them off along with my nasal prongs and chew on the ends and then look up and grin like I have just accomplished something naughty! Too much hardware on my face, gotta get rid of this oxygen! My specs are indestructable....my mommy has bended, folded, twisted, cleaned (several times), and pinched them a million times already to fit my face right! Another fun challenge!! Every time I rip them off and chomp on them for a while she has to start over! HA-HA, another one of my tricks!
Still on schedule for heart cath September 22nd...pray for good outcome! Have pre-op check on the 19th! My grammy Diane and Great Gramma Lou comin' in a week...gettin' geared up for their visit! Not much else goin' on...continuing to love life, be happy, and getting stronger every day! We shall keep ya posted, thanks for the continued support and entries! ybfhyghyuhjjhuytd dryujy....... Yep that was me typin this time!
c azaz Luvs, Hugs, xcs, Kisses & Smiles!
Carly May
PS. On October 2nd the Down Syndrome Association of Minnesota is having its annual "BUDDY WALK". This is a free 2 mile walk for anyone to help us raise awareness and support for DS. If you would like to join us, pledge $ in Carly's name or learn more about this awesome event you can go to www.dsamn.org! Thank You! For those of you who are out of state, this is a national event and select cities has their own! You can google "Buddy Walk" for further info! Thanks!
Thursday, September 1, 2005 8:19 AM CDT
Just a quick note to say NO heart cath today. People didn't get their act together in time! I am on the schedule for September 22nd! I will write in a little later today with my "Top 10 Tricks" and further update! There's more..... love ya all and hope you like the new photos!!!
LOVES, HUGS, KISSES, and SMILES!!
CARLY
Saturday, August 27, 2005 3:39 PM CDT
Whew...where did the time go...Sorry we have not chatted in awhile! The photographs will be updated real soon too....promise!!
What is new? Well, I hung out with my buddy Ella and was photographed for the book I talked about last time. Once it is finished and ready for sale I will let you know.
I also got another G-tube put in that is in great working order...no mishaps lately but now I have a spare in my closet! I hope I will not need it, but it's good insurance anyway!
I followed up with Dr. Acton, the surgeon who took out my gall bladder. He thought I was healing up fabulous. I have four little incisons that are fading quickly. He did tell my mommy that the pathology came back and the gallstones, (yep plural!) where embedded deep in my gall bladder and it was only a matter of time before they bacame a big problem getting infected and backing everything up! Glad we caught that one!
I also met with Dr. Preciado, my ENT for a follow up on my tubes. He said they were in place, open and looking pretty good. The audiologist also attempted a hearing test in the clinic...that was difficult and did not get very much data! So, hopefully we can get another ABR hearing test while I am sedated for my heart cath. This will either confirm the last hearing test results or give us a better idea where I am at with hearing. If they do not see an improvement from previous the DR may consider doing a CT scan to look at my middle ear anatomy just to rule out any problems. With tubes, the fluid in my ear should be less which should make my hearing improve even though this fluid can come and go! At home I seem to hear things and react to certain sounds. Some days better than others....my mommy and daddy wishes I could tell them whether or not I am having a good hearing day!! We will keep ya posted on this one....
Well the latest on the heart cath procedure is that my mommy received a message from Dr. Lohr (cardiologist) that she will be talking to the FDA on Monday to see if they have approved the device. If so, Thursday Sept 1st I am on the schedule. If they need more time then I am also penciled in on the schedule for Sept 22nd. I will let you know next week.
A huge milestone also passed since the last time we spoke. It has been one year on August 16th that I had my last heart surgey. WOW...what a differnece a year makes!!! Thank GOD for such a good outcome!! The repair of my aorta coarctation has looked real good on ECHOS that I have had done recently. YEAH!!!
I continue to do great on soy formula and a little Zyrtec. Only have needed an occasional suctioning but the booger sucker upper is currently collecting dust!! Ya-Hoo! I continue to make great strides drinking from a "big girl cup"....2-4 oz. is my usual from a regular cup and/or a sippy cup. A sippy cup is still a little harder because I have to expend more energy sucking. I love my milk now...take it away and get mad!! Eating is still somewhat of a challenge but I have come a LLLOOOONNNGGG way...at one time I was gagging at the sight of the spoon. Now, I am in control for once and I will decide when and what I am gonna eat! There is progress each day; however, I love to spit the food at whoever is in the direct line of fire. Then I give them a BIG smile!
My grammy Diane and Great-Grama Lou are coming to visit me in a few weeks. It will be the first time meeting my Great Grama...we will have a blast! Looking forward to showing them all my new tricks...wow, will they be surprised or what!!
Well, I better get scootin'! You will hear from me in a few days once we know the date on the heart cath and also "THE TOP 10 CARLY TRICKS" coming soon!!
LOVES, HUGS, KISSES, and SMILES!
CARLY
PS. On October 2nd the Down Syndrome Association of Minnesota is having its annual "BUDDY WALK". This is a 2 mile walk for anyone to help us raise awareness and support for DS. If you would like to join us, pledge $ in Carly's name or learn more about this awesome event you can go to www.dsamn.org! If you register, you need to do this by Sept. 2nd! Thank You! For those of you who are out of state, this is a national event and select cities has their own! You can google "Buddy Walk" for further info! Thanks!
Tuesday, August 9, 2005 8:14 PM CDT
Hey All,
OH! OH! YEAH! How nice it is to be able to breathe without so many boogers, not having to gag on my yucky secretions (sorry for the visual), not having to be suctioned every couple hours as well as not giving all my caregivers scares when I have episodes of dropping my saturations! My mommy has stored the booger sucker upper in the closet being cautiously optimistic. So far, so good! So, now the question is...was it the milk-based formula or the help of the Zyrtec or both? My mommy has to report back to the Dr. on Friday and we will try only one or the other and see what happens....UGH....scared! But...it has brought on a whole new calmness in the Harris household that we have not seen in a LLLLLOOOONNNGGG time! Whew, we can't express how grateful we are!
Well, some other exciting news to report.....I think I am finally catchin' on to this eating & drinking thing. Over the last couple weeks my mommy and daddy have been trying to psych' me out to get me to eat...yep, by putting some pleasurable object up to my mouth then BAM! all of a sudden sneaking a big ole' bite of something like chicken or peas when I open my mouth. Yep, I am a stinker I don't like to open my mouth for food that is good for me but when it comes to eating a popsicle or sherbert........
AAAAAHHHHHH..open wide! Well, there is hope...I ate turkey and sweet potateos tonight for dinner and opened my mouth on almost every bite and no prying my mouth open or no psyching me out! Come on mom...it takes a little getting used to...We will take every meal on at a time and hope for the best! YEAH...practice makes perfect!
Once again, not really doing things by the book...I am too much of a big girl to drink by bottle (the whole sucking coordination thing with a nipple is long gone). I am onto bigger and better things...yep a real cup with a cut-out(Thanks for the idea Pat) It is a little messy but I can't seem to get enough of my milk! More...More...More...WOW! Even two days practice has made a difference! Hopin' to make you proud Dawn. No gagging or choking going on! We shall see what therapy brings tomorrow!
Hey Brian - looking forward to another scooter ride,
that was fun!
Well, the only downer to report is over the last two weeks my G-tube got accidentally pulled out two times and it somehow slipped out this morning and is kinda leaking. Easy to put back in but all that hard work eating and its leaking out my tummy! HA! No, not that much is leaking but enough to change clothes. So, off to the clinic tomorrow to get yet another G-tube, I think this will be number six or seven. At least with this kind that I have currently it doesn't hurt going in or out as long as it's done right and not pulled out...we won't mention any names...just remember I'll get ya back later!!
We should hear very soon on a date for the heart cath...still praying every day for a good outcome...keep positive thoughts coming!
I had my one year check-up with Dr.M and got one shot. He didn't want to give me the others like the chicken pox immunization given the off chance that I would be infected with the virus right before my surgery. So, we will wait until 15 months. I am now at the 50th percentile for weight on the Down Syndrome scale and about the 30th percentile for height...he was pleased given everything. I am still not able to sit on my own and he wanted to make sure my hips were okay...so yep another x-ray to rule out hip dysplagia...all looked okay...so just have to get stronger!!
Well, if anyone is trying to get a hold of me Friday evening I will be busy modeling with my friend Ella! You can contact my agent (my mom) for further social dates! We are going to be in a book Ella's aunt is publishing..it will be an ABC book and only children with DS are in it! I will sign autographs later..... Ha!
Anyways..until I meet many of you....and for those of you that I have not seen in awhile...
LOVES, HUGS, KISSES, and SMILES!
Carly May
Thursday, July 28, 2005 9:39 PM CDT
I AM OUT......
Once again I have made my exit in record time. One over night stay and I was outta there! I got home yesterday afternoon. Doing pretty well..my pain seems to be minimal... my mommy slipped me a little cocktail (codeine cocktail that is with a little tylenol) last night at bedtime for a little discomfort but haven't required much since. Belly piercings and all are healing up nicely!! Hey, Dawn..I"ll be sportin' a ruby stud just for you next week in therapy! HA! HA! I have not gained all my strength and vigor back yet but getting there...can't keep a strong girl down for long....
Tha last couple days I have had more secretions and required more suctioning...it's getting old! Last night I gave my mommy and great aunt Joy a little scare. I can't seem to control all thse darn secretions and my saturations went well below the comfort zone and I turned kinda bluish-purple. But, my mommy helped me through it and I recovered fairly quick with a little more O2. Hey Aunt Joy...I don't want you to have to call 911 again so your shift is safe with me tomorrow! Only if you take me for a walk and to the park,,,HEE-HEE!
Well I was out and about today visiting Dr. Shreve (pulmonologist at Childrens) for another opinion. He was very nice and loved my hair. He asked me if I came to his office in a convertible? I promise my mommy really did fix my hair but I have so much it does what it wants! He agreed with all parties that the heart cath is the best thing to do next. He then would want to see me afterwards to possibly repeat a sleep study, ECHO to measure my pulmonary pressures, etc... And finally, he's trying to help a girl out by getting these darn secretions under control. He gave me an antihistamine to try and were going to change my formula for two weeks and see what happens....if that doesn't work, he has plan B...something to help dry me up....but first wants to see if I am having an allergic reaction to something...posssibly my formula!!!
Hopefully....the booger sucker upper can go up on the shelf soon once and for all!
We shall chat again soon!
"WHAT WE ARE COMMUNICATES FAR MORE ELOQUENTLY THAN ANYTHING WE SAY OR DO" -STEPHEN COVEY
C....COURAGEOUS
A....AMAZING
R....RESILIENT
L....LOVING
Y....YEAR OLD
LOVES, HUGS, KISSES, and SMILES!!
Miss Carly May
Tuesday, July 26, 2005 4:32 PM CDT
HEY ALL....
I can't believe it has only been five days and so much has happened since I wrote last! Sorry for not writing sooner but I've been a busy girl!
First of all and most fun was my big birthday bash on Saturday! I partied with all my buddies, got lots of fun new things, and dug into my cake with such curiosity and interest. However, I was getting quite tired so I kept rubbing my eyes and seemed to get cake AAALLLL over! It was very fun!! Pictures arriving soon, I promise!
Last Thursday, on my actual birthday, I went to Childrens and got my second opinion from the cardiologist..Dr. Singh. He was very nice and very knowledgable. I ended up being at his office for four hours. He wanted his own ECHO of my heart and wanted accurate data so they sedated me. Yep!! I gave them heck once again falling asleep. That medicine seems to have the opposite affect on me lately. However, Dr. Singh feels the heart cath is an excellent way to try and plug the two holes in my heart. However, he felt that if they are not successful in plugging the VSD then he would require more data to be 100% certain that I would require open heart surgery. This data can be gathered during the heart cath. If I do require open heart surgery then he felt having this done at Chuildrens Hospital would be best and a different approach would be performed vs. having it at Fairview University. Hopefully all goes well with the heart cath and we are able to plug the holes and not have to worry about making any further decisions. I am not sure of the exact date but will be having this heart cath procedure in late August!
Also, on Thursday I met with the surgeon who took out my gall bladder...yep that is where I am right now! Quick scheduling and not wasting any time they were able to arrange for OR time for today....my mommy and daddy took me to the hospital this morning for surgery. We arrived at 7am and I said goodbye at about 9am. I finally got to hear their voices again at about 2pm this afternoon. Everything went well...they were able to take out my gallbladder with the laprascope. I have 3 incisions, one of them is my belly button and that is where they took out my gall bladder. The dr. said I had a fairly large gallstone. UH-HAH..one less organ to worry about!!!
Also, my mommy was able to coordinate some other things that I needed done. I got tubes in both ears and they found quite a bit of fluid. I also had an ABR hearing test. This is where they test for inner ear permanent hearing loss...this all tested normal! However, my middle ear functioning still showed some hearing loss. This could be a result of getting tubes in and/or extra fluid can be backed up. I have to go back in another month to see the ENT and the audiologist to have my hearing retested before any further diagnoses are made. The audiologist did mention the possibility of hearing aids if a hearing loss is still present. She said we need to be conservatively aggressive in treating this...if that makes sense!! We do not want to rush into something if I do not need them but at the same time do not want to deny me from hearing to my full capability! We will let you know of the outcome!
I also had a bronchoscopy done to look at my airway starting from my nose all the way down almost into my lungs. This is a camera on the end of a scope that takes pictures. The dr. said everything looked amazingly clean with no evidence of any anatomical problems. He also felt that there was no evidence of any aspiration. He believes my upper airway congestion/secretions may very well be to do with the oxygen. So the sooner I am off this thing the better. Since we now know that is nothing anatomically wrong with me that is preventing me from vocalizing...I may just need some growing, maturing, coordinating movements, and more lung power.
Well, all in all everything went pretty well today. I am still in and out of sleep. Have not needed anything for pain... I am tough as nails...so they say!! They are waiting to hear some more bowel sounds before I can start eating again. Also, the dr. said once I recover there should be no reason why I could not start drinking thickened liquids...that should be interesting since I have not done that for six months! HA! We will keep ya posted.
Anyways, gotta go rest and we will chat later!!
LOVES, HUGS, KISSES, and SMILES!
CARLY MAY
Thursday, July 21, 2005 2:37 AM CDT
READY....ONE.....TWO....THREE.......
HAPPY BIRTHDAY TO ME! HAPPY BIRTHDAY TO ME!
HAPPY BIRTHDAY DEAR CARLY! HAPPY BIRTHDAY TO ME!
YEAH........I AM THE BIG ONE YEARS OLD TODAY!!! PARTY.....
Gearing up for my big party on Saturday, can't wait to see all my friends...I'll smile big with some yummy cake and frosting on my face so I can share my party with all of you too!!
On a side note...remember last journal I talked about possibly having gall stones......ya well, YEP....I have one! So, I am meeting with the surgeon today beacuse I have to have my gall bladder taken out and soon! The doctor said this is probably caused from being on all the diuretics. They can not just zap out the stone because I could get more. Also, it is located in the neck of the gall bladder where if it became obstructed then the chance of infection is high and that would not be good. Of course, this has to be done before my heart surgery so this will push that back near the end of August now. I should be having gall bladder surgery in the next week or two. Hopefully they can do this with a scope so it will be a fairly easy recovery and the incisions will be small. WOW! who would of thought a one year old with a gallstone!!
My sleep study went pretty well on Sunday - I got way too over stimulated and could not get to sleep until 12 am! I was tired and fussy and not about to tolerate all these funny straps, wires and tubes on my body...but then I fell asleep and they were able to get some good data...we will go over the results with the pulmonologist on the 28th.
Still waiting to get in to see another ENT....nothing new there!
I am also going to stop by and see all my friends at the NICU today in between dr appointments...I thought it was only right to go back on the day I came into this world and see all the wonderful people that helped me, mommy and daddy! We are still forever grateful!! THANK YOU!
(PS) please read the last journal entry if you have not already so you are not confused on this update!
Well, I better get back to bed...after all it is 2:30 am...my mommy came in to give me my medicine and I asked her if we could go write a message and sing me HAPPY BIRTHDAY...here we are!
Anyways - thank you, thank you, thank you to all of our friends, family and everyone who has supported us during the last year! It means sssssooooooo much and hopefully one day I get to meet all of you!!
Love, Hugs, Kisses, and Smiles...and today Big WISHES!
HAPPY DAY.....
MISS CARLY MAY
Sunday, July 17, 2005 8:53 AM CDT
Hey Everyone!
I just got done eating some breakfast and having a conversation with my mommy about my wishes for my birthday!!! Amongst some new "big girl" toys (some of my other ones are bbbbooooorrrriiinnngg)I wish for my heart and lungs to be better soon so I can be off these
tube(s) ..... and I may be getting that wish via surgery! No one wishes for surgery but I am hoping for a successful one to make me better!
Yes.... it has been two busy weeks since I have last written...too bad my calender was not filled with all social outings vs. dr. appointments! Ha!
Anyways, after the procedure I had two weeks ago my cardiologist (Dr. Lohr) presented my case to the team of surgeons and other cardiologists AGAIN! They know me well! My pulmonologist was not in attendance but all along has thought that I need surgery to have the two holes in my heart closed. So.....the conclusion of that meeting was that 6 out of 7 agreed. However, I am getting a second opinion from another cardiologist (Dr. Singh)at Children's Hospital on my birthday (21st)...we have heard nothing but fabulous things about him...I am also getting a pulmonology opinion from Dr. Shreve at Children's on the 28th. We have heard great things about this guy too!! But, if they concur with the plan of surgery then it's a go ahead, could be as soon as 1st or 2nd week of August. We should find out the date this week.
As far as surgery goes, they will try to do it first by catherization. The dr. is very confident that he will be able to plug my small ASD (atrial septal defect)with the device but my larger VSD (ventricular septal defect)will be much more difficult. One..because of my size and two....it's in a difficult area to get at in the muscle. So, that may lead us to open heart surgery if he's not successful. We are hoping and praying that we would not have to do the second option but it sounds likely.. PRAY, PRAY, PRAY!!!
Before I see the new pulmonologist he wanted me to have a sleep study...so me and my daddy are going tonight to Children's Hospital in St. Paul to have a sleep over. I guess they look for sleep apnea and how my airway works together with my heart and lungs. The results of this should be interesting! HA!
This last week I also met with my ENT and my mommy told him that semoething needs to be done about my ongoing upper airway congestion that still requires suctioning 1-3 times a day! Also, I am still not doing much vocalizations - just alot of raspberries, clicking and grunting....my mommy wants to know if there is anything wrong with my airway, vocal cords, trachea, etc... that is preventing me from babbling on, or maybe it is just fom my limited lung power and low tone??? The ENT said the only way to find out is to have a bronchoscopy. This is a camera on the end of a scope that would look down my whole airway to look for anything abnormal. However, my ENT felt this probably would not happen until after my heart surgery. The other thing that he expressed to my mommy was that... I have many issues and he would like to refer me on to someone more experienced at Children's hospital. So, now I am on to my third ENT dr....hopefully he will have some answers! That appointment should be in the near future.
I also saw the tummy dr. and she felt I was doing well despite my stomach still being on the bigger side. So, she ordered a stomach ultrasound mainly to look at my liver. She mentioned children with DS can have bigger livers and wanted to see if that is the cause of my "pot belly"! HA!She didn't think I had that bacterial overgrowth in my bowels that caused all that gas and distention several months ago. I haven't heard the final result but during the ultrasound the tech mentioned my liver looked large and noted I might have gallstones! WHAT???? Yep, that is what he said but we are waiting to talk with the dr. to get the final read! WHAT IS NEXT!! HA!
Oh yeah - some where in there I still manage to play, poop, attend therapy, sleep, eat, stand (yep, I am standing with minimal help)...the crawling thing may just be replaced by walking. You know me, DO NOTHING BY THE BOOK!
Also, we ventured out in 100 degree weather yestrday and got my 1 year old pictures taken. Of course, I was off my regular napping schedule so my mommy and daddy missed the window of oppurtunity of me smiling and happy. I was not about to smile for the camera when a was rudely waken up...but managed to give them some cute ones anyway!!!
WOW!!! I will end there and give more updates and pictures later. STAY COOL!
LOVES, HUGS, KISSES, and SMILES!!
MISS CARLY MAY
Wednesday, July 6, 2005 8:53 PM CDT
Happy Late Fourth of July to all of you!
And Happy Anniversary to my mommy and daddy today!
We had a great weekend...met mommy and daddy's friends from Oklahoma and went to auntie Erin's & uncle Perry's place. Once again, all the luggage and supplies were mine. This time daddy packed a "big" plastic tub and then some.....Whew! I think mommy and daddy need a vacation after packin' all that stuff!
Anyways, I made it through my sedation procedure last week pretty well, but not without a fight! I have to show them who's the boss still. I was given a vial of medicine down my g-tube, in which it should have taken effect in aprox. 15-20 minutes. NO WAY - HOE - SAY! So, they gave me another vial! The doctor said it was enough to put an elephant asleep! Do ya think it stopped me....nope...wide awake! So I got myself some Valium in the form of a suppository. It worked alright.....in more ways than one! Not only did I fall asleep this time but left a SURPRISE for the nice nurse! HA! We were all laughin!
As for the results, to make a long story short:
Per cardiology....the echo with nitric oxide did not change things much. It once again proved that the hole in my heart is shunting blood to my lungs but not significant enough to intervene with surgery. Dr. Lohr(cardiologist) feels that this will eventually close with time. She noted that she has never seen oxygen requirement like mine with this kind of heart defect.
Per pulmonary.....the hole in my heart is significant enough to intervene with surgery. Mommy and daddy did not discuss the results in length with Dr. Cornfield but we see him on the 14th for a follow-up apt. to discuss many things...as you would imagine!
So, mommy and daddy have arranged appointments with another cardiologist and pulmonologist at the other Children's Hospital for a second opinion. These two doctors have come highly recommended. Right now I am scheduled for mid-August but Dr. Lohr (bless her heart) is trying to help us get in sooner and was pleased to hear we are seeking another opinion on both cardiology and pulmonary. We will let you know more as we know more!
My sinus infection/rhinitis stuff is still yucky...having to be suctioned quite a bit. Only two days left on my antibiotics and still not much better. I am seeing my ENT on Monday...he better have answers or better yet a solution!!
Other than my weekly dr apts. therapy is going well and all my therapists are pleasantly surprised by my weekly progress. Eating food is slow but sure...I got my first teething biscuit/cookie yesterday...YUM-YUM...was it good and did I sure make a mess! OH WELL said mommy!
Mommy & my best bud Ella's mom Carrie are taking over the South of the River Down Syndrome Parent Group as facilitators. They are not sure what they are getting themselves into but looking forward to meeting new friends!!
Better get back to the crib...dreamin' of the day I do not have to wear this tube on my face anymore! Thanks for checkin' in and we shall keep you posted!
LOVES, HUGS, KISSES, and SMILES!
CARLY MAY
(p.s.) pray for my Uncle Dave (my daddy's brother)- he has been in Iraq fighting for our freedom..he is always in our thoughts and prayers.
Saturday, June 25, 2005 9:24 PM CDT
....11 months down and less than one month to go before the big "ONE", I am getting to be such a big girl...weighing in at 15 pounds and 6 ounces as of today!!
I just got done playing with my buddy Ella and her brother Evan. I also ate some applesauce earlier today and did the bestest job eatin ever...no gagging! That's a first, so I think this eating thing is becoming a little easier. I'm not taking huge bites but making some good progress...my mommy is nice she is not having me eat yucky squash or peas yet!
I had to go see Dr. M this morning (my pediatrician) because my nose is continuing to get plugged with yucky stuff and my mommy and daddy have to suction me out every morning and it is getting old...and I want to feel better. So another antibiotic to try and some eye drops. Dr. M said babies with Down Syndrome are more proned to sinus and upper repiratory infections because of their anatomy and immune syestems do not work as well, but...if this doesn't work mommy said she will be demanding allergy tests from my ENT doc..this is getting a little excessive.
To make matters worse I am gettin' a tooth, I am only irritable a little but have lots more secretions..my mommy says I am always so forgiving and at the end of each daunting task I give a BIG smile.
Well, I am having my procedure done this coming Thursday the 30th. I should go home the same day - hopefully with more answers and a plan! We will keep you all posted with the results.
Looking forward to my first 4th of July, heading up to my auntie Erin and uncle Perry's place for a little get together on the lake. Looking forward to meeting my mommy and daddy's friends from Oklahoma - Kim & Cody!
I also met some Manning relatives last week, it was alot of fun...my great Aunt Barb and Uncle Gene and Great Aunt Lenore and Uncle Milo. Hey..it must run in the family...they are trying to humor me or something...first my great aunt Joy is shooting prune juice on the ceiling and now my great Uncle Milo is droppin' watermelon on the floor AND falling into my trap of tubes and wires...AAAHHH-HA...finally somebody got caught up in them like I do!! :)
(Just kiddin guys...love ya)
Anyways, I have been keeping real busy at all my therapy appointments--starting to use my legs more and standing with help for a short time and continung to get stronger in my tummy and back...not long before I am sitting on my own. Ya-Hoo! I was also able to sneak in a play date with my new friend Eva who is seven weeks old- we had fun!
Well gotta get back to my crib...sweet dreams are awaiting me..I will keep smilin' for the camera so daddy can keep the pictures coming. Talk to you all soon and I appreciate everyone continuing to check in with me, it really means alot!
Loves, Hugs, Kisses, and Smiles!
CARLY MAY
PS. Thanks Pat for getting my medicine and it was very nice to meet you Stacey-I will have another playmate soon!! Yeah!
Thursday, June 9, 2005 8:04 PM CDT
" How simple it is to see that all the worry in the world cannot control the future. How simple it is to see that we can only be happy now, and that there will never be a time when it is not now." - Gerald Jampolsky
Hey all,
Hoping summer is finding you all enjoying the outdoors and sunny filled days. Well, over the Memorial holiday weekend we did alot of firsts....left Minnesota for the first time (oh..just next door to Wisconsin) to my buddy's Max & Kate's place on the lake. I was laughin' at my parents...you should have seen the car, you would thunk we were going for weeks...Everything was mine except two small bags and a 12-pack of corona! HA! The oxygen machine and all...and mommy was all squished in the back with me. What parents do for their kids AAAHHH! They love me!I also took my first boat ride on the lake...BBBRRR a little chilly but daddy bundled me up. HOW FUN! Not too much longer before I am out there wake boarding and showin my daddy up. I also played outside on a blanket and had a blast!
My therapist Donna through the school is on break for a couple weeks but I have been going to private therapy: physical and speech. Occupational therapy is starting next week. I am already making some good progress. My speech therapist's name is Dawn and she is very fun but has a tendency to stick things in my mouth that I sometimes do NOT like> however I am getting better tolerating this and now can eat tiny bits of cereal without gagging. She is working on desensitizing my mouth so I can eat like a big girl soon! My physical therapist's name is Brian and he's a pretty cool fella...he's working on sitting, bearing weight through my arms and legs and all sorts of stuff.
I am a rollin' machine, I have a tendency to pull my feeding pump with me when I am hooked up. My oxygen tube as well as my feeding tube wraps around my body several times before somebody rescues me from this cluster of plastic. I sure have been happy lately...so happy that I still give my auntie Erin and Great Aunt joy a run for their money when it comes to nappin'. Overall, things at home are going pretty smooth...did have to go the the clinic on Monday to replace by tummy tube...it kinda malfunctioned and broke but my daddy the engineer was able to fix it and avoided a trip to the ER over the weekend. The procedure was painless, I got rid of the j-portion of my tube. I no longer have a long tube going into my intstines, now just in my tummy. Yeah, less foreign material in this beautiful bod!!!
I saw my cardiologist yesterday...Dr. Lohr. No ECHO because I am going to be scheduled in the near future for a procedure that will consist of 2 echo's of my heart...one before and one after I breathe Nitric Oxide while I am sedated. I will breathe nitric oxide for aprox. 10 minutes and this will dilate my pulmonary vessels as well as the holes in my heart and once and for all we can figure out if the root cause of my problems is heart or lung. Dr. Lohr does not think they will find anything new on the heart but my pulmonoligist still thinks they are underestimating the size of my VSD and ASD and the shunting of blood that is occuring im my lungs. We shall see...the end result of this procedure could have several different paths to correct...some not so fun...we will discuss that when the facts are on the table. My mommy and the doctors are also trying to coordinate my hearing test and possibly tubes for my ears during this sedation procedure...it would be nice to get it all done in one big swoop! I will keep you all updated on the date of this procedure.
For now, I will continue to make faces at my dancing Elmo, bang my slinky on my knee while sitting in my chair, getting tangled in all my cords and loving life like a little girl knows how! New pictures arriving soon!
LOVES, HUGS, KISSES, AND SMILES!!
Miss Carly May
Wednesday, May 25, 2005 3:42 PM CDT
Happy Happy 10 Month Birthday To Me (the 21st)
Whoa...was I tired! I just woke up from my nap. My great Aunt Joy and my mommy and daddy said I am the energizer bunny lately! (hey..I can't make liars out of them) The last two weeks I have been doing very well and have lots of energy! Getting much stronger with sitting up in my chair..just broke my personal record today...30 minutes and still going strong but then mommy smelled something kinda yucky comin' from my direction...so we headed to the changing table..HA! I can't seem to stay on my back any more, love rollin' to my tummy..still have a little trouble on arm placement in order to get back onto my back...darn it!! Every day I am coming up with new ways of talkin and makin funny sounds, I am still limited on vocalizing because of my lungs but every now and then I make a new peep of some sort!
Anyways, here's a little update on my medical doings...
I am FINALLY over my sinus infection..mommy has boxed up the "booger sucker upper" hopefully for a long time. What a trial that was...I saw the ENT doctor on Monday and he thought everything looked pretty good despite all the problems I had recently. I need to continue using some nose drops to help keep my nose stay moist, he also cleaned a bunch of yucky wax out of my ears and looked in them with the microscope and saw some fluid in the right ear. He does not want to do anything right now but I have to see him in a few weeks. If I have any procedeures coming up where I have to be sedated then he might consider doing my ABR hearing test and looking at my ears more in depth..(and possibly tubes)because I am a wiggle worm now and can't sit still, my gosh what do they expect???
Well, for the status on my lungs and heart... I saw my pulmonologist last Thursday and did get one piece of good news.. I can start eating pureed foods but still no bottle. Mommy tried a few times to feed me fruity stuff and it's slow going. I want to eat but this foreign substance in my mouth will take a little gettin' used to since I have not had anything in my mouth except for toys, blankets and stuffed animals..I will keep ya posted on my achievements..steak and potatoes may be a couple weeks away yet!
However, the down side is that my CT scan of the lungs did not show any improvement from last month and the echo of my heart was actually worse. The doctor and my mommy were shocked...because one would never guess by looking at me! The two holes in my heart were bigger. I am having another echo and seeing my cardiologist on June 8th and a plan will be put in place between all parties. My pulmonologist thinks that since my pulmonary hypertension is improving now my heart disease is worsening. If that is the case I may need another heart catheterization to measure the size of the holes to determine if surgery is an option again. He also thinks I may have some other lung disease that is complicating things but he is not sure what exactly! He put me on steriods again for 10 days..so far I am still needing O2, maybe slightly less but my breathing is great and respiratory rate is better...we will keep ya posted once we know anything...anxious to have a plan in place and pin point the problem so we can fix it..however that may be! Just want to get on with life without this tubing draggin' behind me, because when I start creepin' and crawlin' I don't want my mommy and daddy to find me and the tubing is a dead give away...HA HA! Anyways sorry for the long journal entry...gotta go play some more..Love to you all and thanks again for checkin in on me!
LOVES, HUGS, KISSES, and SMILES!
Carly May
Thursday, May 12, 2005 1:01 PM CDT
"WE ALWAYS FEAR WHAT WE DO NOT UNDERSTAND...YET
CURIOSITY OF THIS SENSATION TURNS US BRAVE"
Hey All-
I just awoke from a nice nap...dreaming of good things to come! Since I have written last I have been continuing to battle a sinus infection and upper airway irritation. Every morning is the worst..my mommy and daddy have to suction my nose so I can breathe better and I gag on my secretions. Good news though...the last two days have been better...no gaging or wretching and I have not needed any suctioning. Yeah, I am happy but my mommy just cringes when she has to do this. Hoping I am on the road to yet another recovery of some sort. The last week or so I have also had a low grade tempature but on Tuesday it spiked to 102 so my mommy and great aunt joy came along to meet Dr. Morkeberg. Once again they searched several times for a vein to get blood and third time was a charm, now I have bruised arms but my white blood cell count was not elevated. Yeah! My pediatrician thought I still had signs of a sinus infection and a rare possibility of allergies. So back on antibiotics for 10 days and hopefully all will be cleared up or else onto an allergist. Of course the doctor said it is very rare to get alleries to pollen and those things at my age but you know me... do not count anything out until it's been ruled out. I will be having an ENT consult in 1 1/2 weeks which hopefully we will have better insight to all my upper respiratory problems.
Last week we saw Mary Jo the OT and Dr. Rosen (friends from the NICU) in the Down Syndrome clinic for a follow-up. They thought Carly was doing exceptional well despite all of her difficulties. I am weighing in at about 14 1/2 pounds and have gone from being on the 10th percentile for weight to the 50th, which is great!!! The BIG 26 calories that I am taking in has helped me grow!
I am continuing to get stronger and stronger, rolling more and sitting beter and better in my chair, making good gains in therapy. I start my private therapy next week. I am also communicating more and certainly getting my mommny and daddy's attention, I make certain sounds to let them know...you hoo, I'm down here!!HA!
On to the pulmonologist again next week as well as another CT scan of the lungs, my breathing has been doing very well, we are praying for good news!!
Well, not much new to report just wanted to say a quick hi and thanks always for checkin' in with me, I gotta go play in my saucer...it's awesome!
New pictures coming in a day or two!
Loves, Hugs, Kisses, and Smiles!
Miss Carly May
Monday, April 25, 2005 9:24 PM CDT
Happy Birthday To Me, Nine Months That Is....
Yep on the 21st of April and I was home to celebrate!
Sorry, it has been awhile since the hospital update! I was able to escape that place in style via my comfy stroller once again last Saturday (the 16th). Since then I have enjoyed the last week thouroughly with my grammy Diane, however she headed back to Montana today! BOO HOO-I will miss her!
With all the different cultures I had done in the hospital, nothing was ever found...but I am finally over what they think was a virus of some kind and over my sinus infection (for the most part). I still have a few episodes here and there where I gag and wretch when my sinuses drain into my throat.....YYYYUUUKKKK! The medical supply company set us up with a suction machine or a "booger sucker upper" that helps my mommy and daddy clear my airway when I get stuffy. This is much better but I still need the nostrils cleared every couple mornings. That is how I ended up riding in the ambulance to the hospital...no suction machine and no way to clear my airway!! I am all done with antibiotics for now! However, the doctors added an extra dose of Lasix (diuretic) which seems to help my breathing tremendously, they felt my lungs looked "more wet" on x-rays.
Since being discharged from the hospital I saw my pulmonologist for a re-check , even though he saw me in the hospital. He thought I was doing very well with all things considered...strong, vocal, happy, active, and my lungs sounded good. However, we got some tough news that I will probably be on oxygen for one to two years due to the severity of my lung disease. If I am able to come off the "tube" earlier then it can only be a gift. I am having another echo next week to measure the pulmonary pressures, With this data...if the pressures have not changed or worsened since my last echo then Viagra may be started...yep, like I was saying in my last journal entry, this is used to relax smooth muscle and help open up the vessels from being so constricted. I also have a repeat CT scan of my lungs in three weeks with a follow up when all this will be decided.
Still nothing by mouth but hoping to do more "bolus feeds" into my tummy via the g-port 4 times a day with a little bit dripped during the night until I can manage larger volumes agin at one time. My tummy doctor wants to start feeding me a more natural way instaed of being hooked up to a feeding machine 20 hours out of the day. Wow - that would be nice... a little freedom from one more tube!
I continue to make my mommy and daddy proud to tears by the things I do everyday in spite of everything that I have been through. My fighting spirit shining through....
My teacher Donna was back last week tryin' some new things and I was makin' some gains. I am starting some additional therapy this week... I have a physical therapy eval on Wednesday and speech therapy eval on Thursday. Also, on Wednesday my mommy and I are starting a class through the school system...hoping to meet some new playmates, it is other children with disabilities and their parents. On Friday, it's the big 9 month shots and check up with Dr. Morkeberg! What a whirlwind of a week...and somewhere in there I have to find time to play, poop, take my meds and if it ever gets nice again.. take a buggy ride..HA HA!
Anyways, we will keep ya posted on the happenings in the Harris household..never dull!! Thanks again to all of our friends, family, teachers, doctors, nurses and all the special people we have met along the way for your love, support, and knowledge.. You will never know what it means to have all of you in our lives.
Thanks for reading another chapter in my book of life..now it is back to sleepy time and dream land... cuddling up to my monkey.. BYE BYE!!
PS..new pictures arriving soon!
Take care and Good night...
Loves, Hugs, Kisses, and Smiles!
Carly May
Thursday, April 14, 2005 10:27 AM CDT
Happy Spring!
Hey all, sorry it has been awhile since I have journaled.
I have been enjoying some spring days by going for walks in my stroller with mom and dad and great aunt joy. I love it,I nap great and fresh air feels sssoooo good!
However, I have been battling fevers and a sinus infection which is very rare for someone my age, but then again I have the darndest things happen to me...as you know. This has been going on for about three weeks and I am into my antibiotic about two weeks. My sinuses drain and then I gag and want to throw up but I can't (because of my nissen) so my mommy and daddy have to vent my g-tube to give me relief. Then I am fine until I get all stuffed up again. This makes it hard for me to breathe and the oxygen can't get through.
I am improving but not without a scare of course...
So...that leads me to tell you where I am at currently...yep at the Fairview resort and spa hospital. However, I am starting to think it is not so spaish anymore. My grammy Diane is visiting again from Montana and every time she comes to visit I seem to find myself here in the hospital. But this time me and grammy came via ambulance. Tuesday evening I was having a difficult time breathing beacuse I was all stuffed up and my oxygen saturation levels were dropping into the 70's (supposed to be above 95), I was turning blue and mottled and becoming more and more lethargic...of course my mommy and daddy were not home at the time...grammy called 911 and we were off to Fairview. I have been started on another antibiotic and they belive I have a combination of bacterial/viral infection. Of course...with the viral infection it is a matter of waiting it out. We might go home today but I spiked a 102 fever again this morning..so we shall see. When we do go home we will have a portable suction machine to help suction out all the "boogers" that are blockin' my airway. We don't want to be callin the ambulance people again.
I also saw my cardiologist last week and had another echo of my heart. The upper hole in my heart (ASD) looked smaller but the VSD looked about the same. The wall of heart looked thickened. My doctor expressed some concern and said it could be a result of the steroids I was on in February. This should get better but we will watch it. There is also talk that I might start Viagra...yep..and I already told my daddy to keep his hands off. The Viagra is used to help treat my lung disease. Basically it helps relax and open up the vessesls in my heart and lungs. I need to pass this viral thing first and thenthe Viagra option may be considered.We will keep you posted!
I will be more busy in the next few weeks. I am starting some private therapy services in addition to my home visit I get once a week. We are always keeping busy with seeing one of her doctors.
Anyways< I gotta go play. I got a new chair and it helps me sit up by myself. I smile so big and am proud of myself whrn I am sitting in it.
Talk Soon.
Love, Hugs, Kisses and smiles!
Carly
Sunday, March 20, 2005 6:13 PM CST
HAPPY EASTER TO ALL OF YOU & HAPPY 8TH MONTH BIRTHDAY TO ME!!!! (the 21ST, YEAH)!!!
WELL THINGS ARE GOING PRETTY GOOD ON THE HARRIS HOMEFRONT, CAN'T COMPLAIN FOR THE FIRST DAY OF SPRING, OTHER THAN THE INCHES AND INCHES OF SNOW WE GOT OVER THE WEEKEND!
I SAW DR.CORNFIELD(pulmonologist)ON THURSDAY AND HAD A CT SCAN OF MY LUNGS. IT SHOWED AN IMPROVEMENT OVER THE LAST ONE I HAD IN JANUARY BUT STILL NOT WHERE HE WOULD LIKE THEM TO BE. I CONTINUE TO BE ON AN ANTIBIOTIC AND ITS BEING USED AS AN ANTI-INFLAMMATORY BUT NO NEED FOR ANOTHER ROUND OF STEROIDS AT THIS TIME. MY LUNGS ARE HEADING IN THE RIGHT DIRECTION--I HAVE TO GO BACK TO SEE THE DOCTOR IN A MONTH AND HOPEFULLY BY THEN ITS EVEN BETTER AND IT BETTER BE TIME FOR THE BOTTLE AGAIN. THE DOCTOR FELT IT WAS IMPORTANT TO CONTINUE NOTHING BY MOUTH AND MY YUMMY FOOD WILL CONTINE THROUGH MY G-TUBE! HOPEFULLY WHEN IT DOES COME TIME TO EAT AGAIN, I HAVE NOT DEVELOPED AN EVERSION! I KNOW MY MOMMY IS ANXIOUS TO TRY SOME CEREAL OR REAL BABY FOOD WITH ME....BUT FOR NOW SHE WILL HAVE TO WAIT! ALSO, NEXT MONTH I WILL HAVE ANOTHER ECHO AND THE LUNG DOCTOR IS HOPING TO PROVE TO THE HEART DOCTORS THAT THE HOLES IN MY HEART ARE STILL CONTRIBUTING TO MY LUNG DISEASE, WE SHALL SEE.... I DON'T WANT TO GO THROUGH ANOTHER HEART SURGERY BUT I JUST WANT ALL THE PROBLEMS FIXED, SO IF THAT MEANS THE LUNG DOCTOR HAS TO BE RIGHT THEN THAT IS OKAY!
I AM GETTING BIGGER EVERYDAY, I WEIGHED IN AT THE BIG 12 POUNDS 8 OUNCES AND 221/2 INCHES LONG THE OTHER DAY. I AM LEARNING NEW THINGS DAILY AND LEARNING HOW TO GET MY MOMMY AND DADDY'S ATTENTION WHEN I WANT SOMETHING. I AM DEVELOPING AN ATTITUDE AT TIMES AND HAVE LEARNED THAT CRYING GETS ME THINGS...AAAHHHHH...I DO NOT CRY MUCH AT ALL BUT HEY IT WORKS!! HEE-HEE!
ANYWAYS-HOPING TO CELEBRATE THE BIG "8" TOMORROW BY JUMPIN IN MY SWING, WATCHIN A LITTLE BABY EINSTEIN AND MAYBE...MOMMY WILL TAKE ME TO THE BIG MALL-YEP TO BUY MORE CLOTHES!! WE WILL BE ENJOYING A NICE EASTER DINNER AT MY GREAT AUNT JOYS AND COUSIN LESA'S NEXT SUNDAY..YUMMY!
TAKE CARE AND TALK SOON!!
LOVES, HUGS, KISSES, AND SMILES,
CARLY
Saturday, March 12, 2005 5:26 PM CST
Greetings from the Fairview resort & spa!!
Yes, I am back (in the hospital that is..) continuing my facials (nebulizer treatments)four times a day and stayin' as cute as ever. However, this time my lungs are not the problem.
Why can't a fever just be a simple fever...maybe beacuse I am cutting two teeth!! But, NNNOOOOOO - not with Carly May -things have to get complicated and nothings ever easy!
Early Friday morning I started not feelin' so well and running a high temp (102.5). So my daddy took me to the doctor and my white blood cell count was 21,000. Normal is 8,000...this means infection somewhere!! My doctor was concerned so he admitted me via the emergency room. While in the emergency room I had blood drawn twice, an IV (which took an ultrasound to find a good vein), a chest x-ray, a CT scan of my head, a spinal tap on my lower back (which took five needle pokes and I was not happy!!) and two attempts at putting a catheter in to collect urine. All of these things were done to help find my infection. WOW! The spinal tap and ct scan of my head were done because the doctors were fearing meningitis. So far, results are negative, thank goodness! They can't seem to find the source of infection but there are several blood and urine cultures still pending! But, we may never know and I may just have a "bug" that only time will help. I have been getting 3 diffrent kinds of antibiotics!! Today I feel great...back to my ole' self.. smilin' & cooin! I rocked and rolled with my Great Aunt Joy while my mommy went home and my daddy worked! No more fever and hope to be going home tomorrow! I have to wait 48 hours for all the tests to come back then I can have a ticket outta here!
It is amazing how things change from one day to the next! I have been doing real good otherwise and I am seeing the pulmonologist next week to reasses my lungs and heart...to be continued....
Anyways..I gotta go play and get weighed and all that good stuff while I am here!! Thanks for checkin' in on me and my mommy and daddy say hi to all of you!
LOVES, HUGS, KISSES, AND SMILES..
CARLY
Friday, February 25, 2005 7:57 PM CST
Hey Everyone!
Sorry it has taken so long to update you on my last dr. appointments. I have been doing remarkably well for about a week since I saw the pulmonologist. Again, my oxygen is way down and I am just needing a puff. At that appointment dr. cornfield (another new dr. that I can add to the list, this guy was great too)reviewed the ct scan of my lungs and disagreed with the pulmonogist I saw in the hopital. He believes my lung disease and pulmonary hypertension is not associated with aspirating becasue it is diffuse, through out all of my lungs, where aspiration would be in certain areas or pockets. Aspirating may have contributed but he does not feel this is the main problem. He says my lung disease is very severe and likely from being premature and extra blood shunting to my lungs from the heart. He was kinda mad that nothing has been done aggressively until now. So, he put me on a 21 taper of steroids and an antibiotic to decrease the inflammation in my lungs as well as nebulizers (facials) four times a day. Hey... a girls gotta do what a girls gotta do to stay beautiful!! That's okay just add a few more meds to the make shift pharmacy on our kitchen counter. My mommy says she needs to buy stock in Target or get a second job at the pharmacy...maybe we would get a discount!!
Well, let me tell ya what more lung power allows one little tyke to accomplish... I talk more (and louder at that), blow great wet bubbles, I am rolling more and more and more and more and more and more...I hold my head up while on my stomach without any problem, and I am working my abs and legs in my new exer-saucer, its pretty cool! Also, I never want to take a nap during the day now... I am afraid I will miss something. But when it does not take so much energy to breathe I have more energy for play and tickle time. But my mommy and daddy really try to get me on a schedule and take naps couple times a day....I fight it! Hee-Hee! But I contine to be an awesome sleeper through the night. Myt therapist/teacher that comes out weekly said I am doing wonderfully and impressed with my progress over the last two weeks.
I will be seeing the dr. again on st. patricks day and taking another look at my lungs with a ct scan and making a plan depending on how that looks. I might be able to return to the bottle (hope so, hope so).
Also, this pulmonologist believed that I WILL eventually need the holes in my heart repaired. So, yep he is in disagreement with the cardiologist and believes good heart cath results are dependent on how well my lungs are doing...Let me see if I can make sense of this for all of you because it is confusing. If you feel like you are on a roller coaster (up, down, left, right, in , out, etc..)of changing opinions don't feel bad cause that's how my mommy and daddy feel. Anyways, he believes when my lung disease is doing worse, which means the pressure in my lungs are high...my heart will show itself as doing good and small amounts of blood will be shunting through the holes. This may have been the case when I had my heart cath. But... when the pressures in my lungs are low and my lung disease has improved...the heart defects will show itself more by shunting more blood through the holes and the holes looking larger. This may have been the case when I had all my echos. That is why they all differ...It depends on how I am doing that day! So, the pulmonologist needs to prove this over the next month by clearing up my lungs. My heart surgery status is yet to be determined.....if they have to, my mommy and daddy will take me for a second opinion if all parties cannot agree on one course of action... WOW! We will see... Anyways, sorry for the long chapter in my novel but I hate being short with you all and then your even more confused If things are not explained.
Hope all is well with everyone, thanks again for all your kind words, support and checking in on me, it really means alot!!
TOOD-A-LOO
Loves, Hugs, Kisses, and Smiles!
Carly May
PS..My buddy Ella is having open heart surgery next Thursday, please keep her in you thoughts and prayers as well. If anyone is interested her website it's the same as mine but instead of my name type...ellablom
Thanks!!
Wednesday, February 16, 2005 3:38 PM CST
Family and friends:
Hope this finds you having a great day!
Well, can you believe I am about to give you great news for once!! I had my heart cath last week and it showed the holes in my heart (VSD's and ASD) are small and the amount of blood shunting through them is very little and I WILL NOT NEED ANOTHER HEART SURGERY!! YEAH! The doctors said a surgery at this point would not change anything and if the holes were to spontaneously close on their own we would not know that either - because the blood shunting through them is so little. All along my echos showed high pressure in my lungs and the doctors thought my heart defects were contributing. In fact they are not!!
So, what does that mean???
Well, The heart cath is considered the gold standard for collecting data and diagnosing, so we will take this info over any echocardiogram.
I am still on the oxygen and now the focus becomes my lungs and getting off this oxygen. My lung disease has been causing the majority of high pressure in my lungs which at times shunts more blood through the holes in my heart, and that is why it is hard to differentiate between my heart defects and lung disease. Well, now we know it is not my little heart.
I am continuing to be fed only through my G/J tube in my tummy and not bottling. We are still not 100ure whether or not I am aspirating into my lungs while I eat so for now I am eating the easy way...and I am packin'the pounds on... I think I broke the 11 pound mark. However, this whole feeding through the tube thing dampens my wardrobe selection...because I need clothes with buttons down the middle so my tube can come out somewhere!! Bummer.. Also, I am always immersed in tubes and wires... feeding tube, oxygen tube, oxygen sensor probe that is attached to my big toe....it makes it hard to transport and limits how far I can go...one of these days I tell ya....we will have a tube burnin' party!! I am following up with the pulmonologist and having a CT scan of my lungs tomorrow. Hopefully this one looks better than the first one. Not real sure what the plan will be...they may consider doing a bronchoscopy-- this is where I am sedated and they put ANOTHER tube down my nose into my lungs and take a biopsy. There is also a camera on the end to take pictures. From this they would be able to tell what I have in my lungs that is causing the inflammation and breathing difficulties. Over the past two weeks I have been doing real good, so I think those steroids I was takin helped. But know I am starting to slowly creep up on how much oxygen I need. Good thing I am going to the doctor tomorrow, maybe he will start me on steroids again....
On Monday, I am going to follow up with the ENT doctor to make sure I do not have an obstructed airway somewhere that is also making it hard for me to breathe.
We just want to thank all of you again for your thoughts and prayers, beacause it has paid off--no heart surgery. Now if I can only eat like normal and get off this oxygen.
Hey, I am rolling to both sides, to my left better than my right. I love talkin' and being read to and I am holding my head up real good while on my tummy! How Fun!!
Well, I gotta go...I am going to go play with my friend Ella tonight...we will have lots to say (ga ga ggggghhhhhh, aaaahhhhh, bbbbblllllhhhhhh)!
We will let a know what happens in the next couple days..
Loves, Hugs, Kisses, and Smiles!!
Carly
PS - Hey aunt Joy my mommy and daddy really are not mad at you for squirting prune juice on the ceiling.. Don't worry they wont add up the tab until the end of the year!! HA!
Tuesday, February 8, 2005 11:45 AM CST
Happy Valentine's Day!!!
HI, I am back! I have presevered through another exciting week and yet another hospital stay! Also I was very very sad to see my grammy Diane go back home to Montana. She took awesome care of me and we had so much fun!!
Anyways, here is how I ended up in the hospital.....last Monday my mommy was holding and feeding me, I fell right asleep> A short while later I woke up crying really hard (which I rarely do) and my color started to change quickly. My mommy and daddy and grammy then realized that my 50 foot oxygen tubing had come unconnected and I was without my oxygen for a little while. My oxygen was connected and turned up, I was in the 60's (according to the box that I get hooked up to read my oxygen rate)and needed to be above 90. I started to slowly improve but was having trouble breathing. My daddy set me down to put the oximeter probe on my toe better and I turned blue and stopped breathing. My grammy called 911 and my mommy was very scared. My daddy patted me on the back and I started to breathe, no CPR needed! By the time the paramedics arrived I was doing much better but still having difficulty breathing. Basically, I was in respiratory distress. Everyone is not sure how this happened but they all felt horrible! (But I forgave them because I still smile and blow kisses)
So, up we went to my home away from home...Fairview University hospital where Dr. Lohr (cardiologist)admitted me through the ER. I ended up staying until Friday and finally went home. While I was there, I was seen by a very good pulmonologist to check out my lungs. It may have been a blessing in disguise beacuse I am having a diagnostic heart catherization tomorrow (to measure the holes in my heart,the blood and lung pressures and some other things to determine a plan for surgery) and my lungs need to be in tip-top shape. The pulmonologist ordered a swallow study, a CT-scan of my lungs and tested me for CF (cystic fibrosis). Thank Goodness the CF test was negative. However, the CT scan of my lungs looked pretty bad and the damage they saw may be consistent with aspiration pneumonia from when I was refluxing and aspirating so bad back in November and December. I also had a swallow study which I passed like a champ. However, a couple times in the hospital I needed more O2 and my breathing became more rapid after eating. The doctors and the speech pathologist are not convinced of the test. Everyone thinks I might be aspirating intermittingly when I eat from the bottle. So, for now I am on a continous drip feed 24 hours a day through my GJ Tube until tomorrow to help make my lungs clear (if I am aspirating). I was also started on steroids to decrease the inflammation in my lungs (maybe it will give me big muscles too, ha-ha). I will have a repeat CT scan of my lungs in about a month so hopefully things will be better. We will continue to experiment with the feeding thing to see if I have any episodes of labored breathing.
Oh, one last thing....my lung damage will not be permanent because us tykes grow new lung tissue until we are five-six years old. (No problem, by then I will be running marathons around my parents).
On Friday all my doctors and surgeons are meeting to discuss the results of my heart cath and to make a game plan for surgery. This next month will be busy and yet again trying, but now the light that we saw several months ago, is much much brighter...becasue I am runnin' out of body parts! Ha! Things can only get better..I promised my mommy and daddy that this time!
Since I have been home from the hospital, I have been doing the best ever...much more endurance, less napping (hee-hee),very social and being a busy-body, I am almost rolling over and just started blowing bubbbles and doing "raspberries". My mommy and daddy think I am quite a "ham" and very much fun. I tell them all about my feelings on the situation, I love grunting and groaning. They seem to understand my language!!
Also, I am back jammin' with my great Aunt Joy and my auntie Erin is going to watch me on Thursday... Ya-hoo!
Pray for my procedure tomorrow and we will keep ya posted on the results, until then keep smiling---I know I am!
Look for some updated photos soon!!
Loves, Hugs, Kisses, and Smiles!
Carly May
Thursday, January 27, 2005 8:25 PM CST
Hey all,
Just want to to start out by telling you about all the things I am grateful for:
....each day that I am here on this earth with my mommy and daddy, my grammy Diane for taking such awesome care of me, cuddly sessions, my yummy milk, my great Aunt Joy for jammin' with me and takin' extra good care, my fish swing, my lambswool car seat, my Auntie Erin who spoils me rotten, my GREAT doctors: Dr. Morkeberg, Dr. Lohr, Dr. Schwarzenburg and Dr. Foker, all the wonderful nurses that I have crossed paths with throughout all my hospital stays, my favorite rattles that I love to stick in my mouth, my hokey-pokey elmo, my therapist/teacher Donna, my friend Ella and Natalie, mobiles, car rides, my nissen (now I don't vomit anymore), my stylin' wardrobe, hugs, laughs and smiles from my mommy and daddy, my loving family and friends that care about me and write to me often, my website, my jungle gym with all my hanging toys, my supportive and friendly neighbors, GOD, my oxygen, my grama patsy who loves me lots, my room, my books, coos, a warm bed, bath time, dry diapers, all my surgeries and procedures that have gone well, my monkey, all my fun blankets, and nap time......beacause that is the time I dream about the future and oh how bright it looks. My list could go on and on but I better give you an update about my health!!
I am just finshing up my two weeks of being on the antibiotic Flagyl to help kills the overgrowth of bacteria in my intestines. I have been really happy and doing pretty good. I have been needing an occasional suppository but poopin on my own too. My stomach still seems to be on the bigger side but hopefully the Flagyl helped. I am seeing my gastrointestinal doctor again tomorrow. We shall see whats in store for me now....
I saw my heart doctor yesterday and it looks like heart surgery is in my near future. I am having a diognostic catheterization first (in the next couple weeks) to determine which kind of surgery would be the best for me...it will likely be with a catheter. This is much less invasive than open heart surgery..but we shall see. With this they would go into my heart and plug my holes (VSD) with a device. Part of the figuring out is which device would be best for me. For the diagnostic cath I am put under conscious sedation but will go home the same day. My surgery will probably occur within the next four-five weeks. The doctor fears if we wait too long that my lungs will have permanent damage. Once I know more I will let you know. There will lots of decisions to make on the surgeons part and my mommy and daddy's part once all the data is gathered about my heart. Hopefully soon I will be on the road to increased energy, easier breathing, no need for oxygen and all the things that come along with it.
However, I am grateful for all the wonderful things in my life even though I have been through some tough times....
Bye for now... your pal Carly!
Loves, Hugs, Kisses, and Smiles....
(PS) Do ya like the outfits..those were my Grammy Dianes clothes when she was a baby..
Tuesday, January 18, 2005 5:25 PM CST
Greetings to you all from frigid Minnesota.... thank goodness for my lambswool carseat cover cause it's freezin here!!
Anyways, I am back home once again- I arrived back to my friends on Saturday. It seems as though so much goes on in just a few days and then we have so much to talk about. One of these days I will have nothing to report but good stuff....
Last Thursday I had my G-tube converted to a J-tube and feedings were slowly dripped into my intestines, bypassing my stomach but I still became distended. So my mommy and daddy told my story again to many, many medical people and spoke with a few gastro-intestinal specialists. After hearing my history they think my stomach empties fine but I have a bacteria overgrowth in my instestional tract. This is letting off all the extra gas they are seeing in my tummy and intestines which makes me very uncomfortable. They collected fluid from my intsestines and sent them to the lab to be cultured. They started me on a hefty antibiotic called Flagyl, saying we should start seeing some results in 5-7 days if this is the problem. However, the doctors still want to rule out any obstruction. So, today my mommy and grammy Diane took me back to the dreaded hospital and radiology department to have an upper GI test and this time they would look at my small bowel. Last time I had this procedure done I "coded" and spent 1 1/2 days in the PICU (pediatric ICU). Thank goodness all went well this time but hopital personel were all very prepared. Good news to report....everything looks good in the upper intestinal tract and they made me drink and my nissen looks good too. Now, on Friday I have to have my lower bowel (colon)looked at for any obstrucion and motility. The doctor also has a hunch that my colon motility is not as fast as it should be and told my parents of a medication I could be on to help that. The Reglan I am on only helps motility of the upper intestinal tract....since everything looks good there,I will probably come off of that soon.
Earlier today my mommy got the results of my bacteria cultures and it shows an abundant overgrowth of E-coli and group D interococus in my small bowel. This can cause bleeding, alot of gas (ah-huh!!),pain and cramps in the tummy. Sure wish I could talk and let them know about these darn gas cramps....Also, if it gets bad enough the bugs..(sounds so gross) or bacteria will eat the nutrients of my formula and then there is no calories left for Carly!! Darn critters!! The doctor said it is hard to pin-point the cause but slow motility will keep the bacteria in the bowels longer. She also mentioned courses of anitbiotics early on could have upset the balance of bacteria! WOW! So, the puzzle is starting to come together, I think!! We will follow up with the tummy doctor on Friday and ask more questions and discuss a plan!!
As far as my breathing goes, I am doing much better once again. Still relying on my diuretic to keep the fluid out of my lungs but back down to only needing 1/8 of a liter of oxygen. While I was in the hospital, my mommy and daddy talked with my cardioligists who think having another heart surgery to close my VSD's would be in my best interest for a couple reasons: One.... I do not want to end up with permanent lung damage from the extra blood shunting to them. Two.... my VSD hole has caused another hole in my heart beacuse it has shunted so much blood (that is the ASD that I talked about before). Third... my VSD is showing no sign of getting smaller or closing. There was a typo error or something.... when I was in the hospital over Christmas that my VSD was closing but that was not true. Fourth reason....I need to grow big and strong and I am still a little peanut and my heart condition could prevent me from doing that. So with that all said, I do not want to go through another surgery but it is needed...but hopefully this will be the end of it... We will keep you posted once we know more. Bye for now!!
Loves, Hugs, Kisses, and Smiles!!!
Carly May
Thursday, January 13, 2005 9:46 AM CST
Hi All, Sorry it has been such a long time since I updated this but we started 2005 out with a bang!
All was going well until I ended up in the emergency room on New Year's Day because my tummy was very very big. My nice heart doctor saw me there and started me on a medication (Reglan)to help with intestinal motility. Over the next week I tried this medication and it didn't seem to help much. My stomach distention seemed to come and go...I would still get real uncomfortable after my feedings. My mommy made an appointment with the gastro-intestinal specialist.
Then last Thursday I got the stomach flu and since I cannot vomit beacuse of the nissen I was doing alot of retching and stuff had only one way to go....you can imagine. Then I gave this yucky stuff to my mommy and some friends of ours. Then she gave it to my grammy Diane who came to visit me on Saturday. Wow... we are all feeling better now...
On Monday my mommy took me to see the GI specialist about my stomach distention and the doctor feels my stomach is not emptying like it should. So on Tuesday, the home health place delivered a feeding pump beacuse the doctor wanted to see if my tummy could tolerate a continous drip through my G-tube over a 20 hour period of lower volume.
Well all didn't go so well because I have found myself back in the hospital where I was three weeks ago. My breathing was becoming very rapid and labored again and my oxygen needs went way up. Part of this was due to my tummy being so big that it pushes up and compresses on my lungs. Also, while I had the flu I did not get my lasix (diuretic) because the doctors did not want me to get too dehydrated. Well, I think my lungs have extra fluid on them now.
Yesterday, I was given a extra dose of Lasix and have had an EKG, chest and abdominal x-ray and several attempts at an IV. Me and needles are no longer friends, actually I don't think we ever were....Ha! I have become a very difficult stick and thank God my parents have advocated for me and say only if absolutely neccessary.
Today I am having a procedure to convert my G-tube to a GJ tube. This feeding tube will bypass my stomach and go directly to my intestines. If this is the problem (my stomach is not emptying like it should) I will outgrow it and eventully be able to eat by mouth again.
Hopefully this will help solve the mystery why my tummy gets so big...even though the hopital is not a fun place, my mommy and daddy say they are not leaving until they have answers to my problems. We have made full circle with this problem and some how it continues to creep back, even after all the procedurs and surgeries I have had.
Anyways, I will keep you updated on our adventures! As you can see... there is never a dull moment in the Harris household. Thanks again to all of you for you love and support, it means so much.
Loves, Hugs, Kisses, and Smiles!
CARLY
Thursday, January 13, 2005 8:52 AM CST
An updated message will be coming later today.....thanks!
Wednesday, December 29, 2004 12:18 AM CST
Well....right after I wrote to you all yesterday I got the good word that I could go home a day early since I was doing so well. I had an echo and it shows much improvement in my heart than the last one. I only have slightly elevated pulmonary pressure in my lungs (before the aspiration pneumonia was making this much much worse) and my VSD's are shunting left to right again and not both directions, which is a good thing. Now, hopefully I just grow big and strong and all those holes close on their own and no procedures or surgeries will be needed in the future. I will see my cardiologist the end of January..... keep your fingers and toes crossed.
Also... I continue to only need very small amounts of oxygen, sometimes I am breathing room air..otherwise 1/16 or 1/32 of a liter, which is just a puff!! The doctors told my mommy that this is only due to my lung disease and being a preemie,I will outgrow it sooner or later! The darn pneumonia was making it hard to breathe and I was needing more oxygen then.
Feedings are continuing to go well, we are just making a few adjustments and getting used to this Nissen. I take pretty much my whole bottle, my tummy sometimes gets a little upset trying to get used to higher volumes again. My stomach needs to expand, until then my mommy and daddy vent my gastrostomy tube during and after my feedings for a little while to let air out.
I am also on one less medication and now just take my meds twice daily, except for my diuretic I still take three times per day. In all I take 13 doses per day.....that's better then the 19 doses I used to need.
I am enjoying so much being back in my crib and my room with all my animals and toys. I finally got a real bath again after two weeks, wow that felt good!
Also, before I left the hospital yesterday I received a special visit from two of the Minnesota Vikings players. They brought me a purple teddy bear (I think now I have about 102 bears..HA!)and an autographed picture of the team. They were trying to recruit fans at a young age. My mommy told them that she would try to do some persuading even though my daddy is a packer fan. They asked if my mommy and daddy's marriage is stable because that often ends a marriage in divorce...one a packer fan and one a viking fan. Anyway..it was fun to meet them and they were really nice and my mommy thought that one of them was cute...but ssshhh...don't tell my daddy!!!
Gotta go play in my jungle gym and practice being on my tummy. I have therapy again next week and have some catchin' up to do since I was in the hospital for two weeks. My strength has greatly improved since I can breathe better, even though I lost some weight. I am holding my head up better and better and I am so alert and love to be talked to. I love my tongue as you can see from the pictures and I suck my thumb like crazy, I would stick my whole hand in there if I could. HEE-HEE!
Love to all of you and we loved seeing all the great pictures and Christmas cards from all our friends and family... Take Care!
Luvs, Hugs, Kisses, and Smiles!!
Carly
PS...If you all could say a prayer for my uncle Dave (Jaime's brother) who is in Iraq fighting for our country I would be happy...thank - you)
Tuesday, December 28, 2004 10:02 AM CST
Hoping you all had a very nice Christmas…..
My mommy and daddy were with me most of the day, they did sneak out to my great aunt Joy’s & cousin Lisa’s for a yummy dinner. When I woke up on X-mas morning I had presents in my crib from Santa. I got a froggy that ribbets, another teddy bear and a fun toy that does all kinds of stuff. We will be having Christmas with my aunt Erin and Uncle Perry on Thursday…cause I am going home tomorrow. Yeah!!!
Once again I have failed to follow the rulebook. I apparently was not supposed to do as well as I have been doing.. I started eating by bottle again yesterday (with a nissen babies do some retching and have trouble getting food down the esophagus in the beginning). I ate like a champ and took 60, 50, 45 and 60 cc’s or ml’s by bottle yesterday and this morning was 90 without any problems…and no refluxing. My goal right now will be 105 cc’s every four hours, so I am almost there. My stomach had shrunk since I had not been eating but hopefully real soon I will be taking more and more in. I also lost some weight, I now weigh 91/2 pounds. This surgery has been a life changing experience. Thank God and thank Dr. Foker!
I am having an EKG and an echocardiogram of my heart today and hopefully there will be a plan put in place on what is next…We will keep you posted. I have had some episodes of increased sweating and the doctors say that is related to my heart and VSD’s. Anyways, I hope you all like the new pictures. I am hoping to keep weaning off the oxygen, it is much less than before and you can see from the first picture I have been breathing on room air part of the day…Yeah! Looking forward to a great 2005 and wishing you all a happy new year…next time I write I’ll be back where I belong>>>>>>home!!!!
Loves, Hugs, Kisses, and Smiles!!! XOXO
Carly May
Wednesday, December 22, 2004 5:54 PM CST
I made it through another surgery with success...... I am making leaps and bounds and hoping soon to be home again with my mommy and daddy. I was in surgery for a total of four hours, half that time was trying to find IV access, and then Dr. Foker(same dr that did my heart surgery)completed my nissen. My incision is under my left rib and they put in a different kind of G-tube. Looks like they will have pull out the instruction booklet again. HA! I have a tube coming out of my one nostril to drain anything hopefully that will come out soon. I was off the the ventilator again in record time, under one hour while I was in the recovery room. Since surgery, I have had two doses of Morphine and about due for another. I am breathing real good and I even opened up my one eye to peek out and see my mommy and daddy. My auntie Erin and Great Aunt Joy were hear to root me on and I could hear them! YEAH! My mommy and daddy whispered in my ear that I am a very brave and strong little girl...that "BUTTE" in me has gotten me through some of this tough stuff. I will be monitored overnight in the ICU and hoping to back to my regular room tomorrow and spend Christmas there. I can start eating once they hear bowl sounds in my tummy--that could take a day or two.
It's gonna be a battle on Friday...my mommy is going to root for the Vikings (in spite of my daddy) while Daddy is rootin' for the packers. We will have to see who wins, hopefully I will be feeling better to wear my packers dress.
All in all everything is going well and hoping to be smiling for the camera once again....Thanks to all of you again for the prayers and thoughts during this time--it means alot.
I probably won't update this until after Christmas so me and my family are wishing you a wonderful and safe Holiday and love goes out to all our family and friends.
Loves, Hugs, Kisses, and Smiles!!!
Miss Carly May
Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is a sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.
Saturday, December 18, 2004 2:16 PM CST
"THERE WILL COME A TIME WHEN YOU BELIEVE EVERYTHNG
IS FINISHED. THAT WILL BE THE BEGINNING."
- Louis L'Amour
.....If you are reading this and have not read the previous journal entry then you might want to, so I am not confusing you all...
I am continuing to make my parents life a little shorter or giving them more gray hairs or an ulcer--whatever it may be. I had a bit of a scare yesterday. Yesterday morning I had to go to radiology for an upper GI study and to get a NJ jube tube placed so I could start eating again. For the upper GI test they put barium (white chalky substance that can be seen on x-ray)into my tummy and intestines. The x-rays showed when I started to reflux this yucky stuff. All was going well until they started sucking this out of my nose with a tube. I started to choke and was having a hard time breathing. My heart rate and oxygen saturation dropped quickly and I turned blue. This is not to mention they had me strapped to a thin boeard with my hands over my head and velcro around my body in three different spots. My mommy was with me the whole time and she remained calm until things started to go bad quickly. SO...the people called a "code" in the hospital and many, many, many people came running to help. By then I had somewhat recovered on my own but I needed to be suctioned out real good so I could breathe better. From that point they moved me to the Pediatric ICU unit to be monitored. I am doing good now but it was very scary for me and my mommy. So..of course I never did get the tube in my nose. Finally, last night the doctor came in my room and put the tube down my nose that goes into my intestines. It has a weight on the end (like a fishing lure)so with the help of gravity, a medication to speed up motility, and time the tube was in place by this morning. However......it seems as though things don't happen without a hitch with me.... the nurse went to flush my tube with a little formula and it would not go in. The doctors and nurses tried to wiggle it, move it back and forth and still nothing would go in. They took it out and there was a kink in the tube. So now they have to put another one in and then wait several hours for it to settle in the right place before I eat. I am on my fourth day without any nutrition, the pacifier is gettin' old!!! And all of this is temporary until I get my Nissen surgery.. By the way, I am on the books to have surgery Wednesday morning at about 9:30. Hopefully that does not get pushed back but the ICU is very busy. There are alot of sick babies and children in here that have had transplants...wow! it helps put things in perspective and reminds us how thankful we are for our situation. Even though I will spend my first Christmas in the hospital.. I am alive and it could be alot worse. Hopefully in a few hours I will be transferred back to the regular childrens unit out of the ICU and start eating.
Talk to you all soon and to be continued......
LOVES, HUGS, KISES, AND SMILES!!!!
CARLY
"One should take children's philosophy at heart. They do not despise a bubble because it bursts. They immediately set to work to blow out another."
Thursday, December 16, 2004 4:27 PM CST
Well....
I have seemed to find my way back to the Fairview Resort and Spa. I have outgrown the NICU Resort and Spa, so I am movin' up in the world. I am in with the big kids now. Yesterday,(the 15th)I had a routine follow-up with my cardiologist and she felt it was necessary that I be in the hospital to be monitored more closely. I have been having a very hard time breathing the last couple days and my oxygen need has gone up. My feedings were becoming harder and harder because I would URP after each one. More and more of my food was going into my lungs. I had another echocardiogram of my heart yesterday and it had worsened from three weeks ago. My lung pressure had also worsened. The doctors belive that all this is related to me aspirating into my lungs.
So... Yesterday they started an IV to give me antibiotics and started me on NPO (which is nothing by mouth or through my G-tube) and today I am already much better. My oxygen need is already less and I am back to my ole'self...smilin' and playin' but still have a ways to go to get my lungs cleared out.
The plan is tomorrow I am having a procedure where they will look at my upper GI tract and put a J-tube in temporary. That is a tube that will bypass my tummy and go straight into my intestines so I will not URP up and still able to get my milk to grow (the tube will go from my nose down into the intestines). This way I will not have to be on an IV for my nutrition. For now I am getting satisfied with my pacifier....but hey, it is not the same! One of these days I will be able to eat my yummy milk from the bottle and not have to worry about URPing and getting sick. Next week I will have surgery for a NISSEN (spelling???)Not sure when but I will keep you posted. The surgeon who did my heart surgery will also be doing this one as well. He's gonna know my insides really well!!
It is looking like I will spend my first Christmas in the hospital but that is okay because I will have plenty of years ahead of me to make up for it. Not sure yet on how long my recovery time will be and how long I will be in this joint but cross our fingers and hope all goes well.
If I have not explained the nissen surgery: they take the esophagus where it enters into the tummy and make it smaller and tighter so food cannot go back up once it goes into the stomach. The first couple years it will be very difficult to vomit if I were to get sick and I will do more rethching and dry-heaving with this nissen. But as I grow my esophagus grows and the opeing gets bigger and I will be able to vomit if needed. Sorry for all the yucky words and for the visuals I am providig you with. Hopefully nobody is eating while they are reading this. HA-HA!
Well I gotta go play in my cadillac crib. It's almost big enough for my mommy and daddy to sleep in but they got their own bed in my room. The doctors and nurses have been very very good to us and I am in good hands once again. We will keep you all posted.
LOVES,HUGS,KISSES,and SMILES!!
CARLY MAY
MOMMY aand DADDY say hello to all of you!!
P.S. We were supposed to get some Christmas pictures taken today and you all were going to get a christmas card but my mommy said they will have to be New Years pictures and a well wish for 2005. Be looking for that.... See Ya!
Thursday, December 9, 2004 1:52 PM CST
Hey Everyone- hoping this finds all of you doing well and enjoying your holiday season. Sorry I have not updated in a while but it has been very busy in the Harris household and alot has happened since we have talked.
First of all, my grammy Diane took such good care of me during the month of November while my mommy went to work. She had to leave the Saturday after Thanksgiving. I miss her very much....
The Wednesday before Thansgiving I saw my cardiologist for a check-up and had an echocardiogram. It showed the holes in my heart (VSD's) are not getting smaller or closing and now I have another hole in the upper chamber of my heart (atrium) that is showing itself more called an ASD. My doctor is concerned because these holes are shunting twice as much blood to my lungs than normal. This is causing high pressure in my lungs. So, they started me on the last medication they could try called Digoxin. I was on this medication before my last surgery for heart failure.
However, to complicate things I have been refluxing alot after I eat. My doctors feel I am aspirating food into my lungs and this is contributing to my increased pressure in my lungs but they are not sure how much....
So, In the next few weeks I will be having some more procedures to make this puzzle more clear. I will be having some testing to look at my upper GI tract and a swallow study. If this shows my reflux is bad enough then I will need surgery for whats called a "Nissen" (I think that is how you spell it). They would tighten up my esophagus where it enters my stomach to prevent me from refluxing, so then this will decrease the pressure in my lungs. I am also having a diagnostic catheterization done and a CT scan of my lungs in the beginning of January. Here they will look closer at my lungs to make sure there is not any permanant damage yet and look at the vessels. For the catherization they will insert a catheter in my femoral artery and go up to my heart to measure the pressure and inject dye in the holes in my heart to see how big they are. This will tell the doctors if I need heart surgery again and what kind and what options we have. So... We will keep you updated on the results of all these tests. It stinks becasue for this procedure in January I will have to be intubated and put on a respirator but hopefully only in the hospital one-two days. Please pray for me and hope all turns out okay...
With all of this , my doctor told my mommy and daddy that if I get sick it could be life threatening and I could be in the hospital on a breathing tube for awhile and none of us wants that. So, my mommy is staying home with me three days a week and my Great Aunt Joy (who takes awesome care of me) will watch me two days a week temporary. Hopefully after all my procedures and we will get a more definitve plan. My mommy and daddy are also looking into getting me a nanny to come into the home and take care of me, becasue where I was going to daycare before there would have been three kids and I cannot be exposed to any sickness right now. Also, can you believe this one....I get a shot once a month to prevent RSV (a yucky virus that I am proned to getting since I have lung problems and a preemie)it costs $4000.00 per shot!! WOW!! Thank GOD for insurance. I will have received about $28,000 in just one shot when all said and done!!
All in all I am pretty stable given my hurdles and I am gaining weight, which is great. Yesterday... I was the whoppin' 10 pounds 2 oz. I am quite the ham!!! I love playing in my jungle gym and smile lots as well as bat at toys and I love laying on my side. I am continuing my therapy weekly and making good progress.
Anyways, I gotta go play and poop and do all the things little babies do..
Loves, Hugs, Kisses, and Smiles!!!!!
CARLY MAY PS...More pictures will be coming soon.
Tuesday, November 16, 2004 9:19 PM CST
HEY ALL YOU PACKER FANS DO YOU LIKE MY OUTFIT?? MY DADDY AND ME CHEERED ON THE PACKERS. MY GREAT AUNT JOY COULDN'T RESIST HERSELF AND BOUGHT ME THIS. AREN'T I CUTE? NEXT MONTH MY MOMMY WILL DRESS ME IN A VIKINGS OUTFIT JUST TO SPITE MY DADDY...HA!
I BEEN HAVIN' A GRAND TIME WITH MY GRAMMY DIANE FROM MONTANA. SHE MIGHT JUST PACK ME UP WHEN SHE HAS TO GO HOME AFTER THANKSGIVING BUT I DON'T THINK MY MOMMY AND DADDY WOULD LET HER GET AWAY WITH THAT!! SHE HAS BEEN TAKIN' SUCH GOOD CARE OF ME SINCE MY MOMMMY HAD TO GO BACK TO WORK - AFTER ALL SOMEBODY'S GONNA HAVE TO PAY FOR THE REST OF MY WARDROBE (BUT MY MOMMMY SAYS I WON'T NEED CLOTHES UNTIL I AM THREE).
ANYWAYS, I AM DOING PRETTY GOOD. LAST WEEK I WEIGHED IN AT THE WHOPPIN' 8 POUNDS 11 OUNCES AND WAS 21 INCHES LONG. HOWEVER, TWO WEEKS AGO MY DOCTOR STARTED ME ON AN ANTIBIOTIC BECAUSE I HAD PNEUMONIA. I STARTED NEEDING MUCH MORE OXYGEN AND MY BREATHING WAS VERY LABORED AGAIN. BUT I DODGED THE BIG BULLET....THE HOSPITAL. SINCE THEN I AM DOING SO MUCH BETTER, REQUIRING JUST A PUFF OF OXYGEN AGAIN. I ALSO STILL GET NEBULIZAR TREATMENTS TWO TIMES PER DAY TO HELP WITH ANY INFLAMMTION IN MY LUNGS AND HELP OPEN UP MY AIRWAYS.
LAST WEEK I WENT AND SEEN A LUNG SPECIALIST (PULMONOLOGIST) AND HE DIAGNOSED ME WITH ASPIRATING. THAT MEANS WHEN I HAVE MY REFLUX OR VOMIT SOME OF MY FOOD GOES INTO MY LUNGS, WHICH COULD EXPLAIN WHY I HAD PNEUMONIA. SO FOR NOW I CAN HAVE ONLY SOME OF MY MILK THROUGH THE BOTTLE AND THE REST HAS TO BE THROUGH MY G-TUBE. I SHOULD OUTGROW THIS WITH TIME BUT ANOTHER HURDLE TO JUMP THROUGH.
I HAD MY FIRST OVER NIGHTER AND LONG TRIP IN THE CAR TO MY AUNTIE ERIN'S AND UNCLE PERRY'S LAST WEEKEND. IT WAS QUITE FUN BUT BOY OH BOY DO I REQUIRE ALOT OF PACKIN'--MY MOMMYS CAR WAS PACKED... WE ALMOST HAD TO STRAP MY SWING TO THE TOP OF THE CAR BUT WE DECIDED AGAINST THAT AT THE LAST MINUTE...HA-HA!!
ALSO, MY MOMMYS'S FRIEND PAM AND MY AUNTIE ERIN HAD A SHOWER FOR ME AND MY MOMMY. IT WAS REALLY FUN AND I GOT VERY SPOILED FROM ALL MY NICE NEIGHBORS, FRIENDS AND FAMILY. MY FRIENDS ELLA (IN THE CHAIR WITH ME), KATE, AND NATALIE CAME AND WE PLAYED!!
WELL I GOTTA GO AND FINISH PLAYIN' ON MY BIG YELLOW BALL AND WORK ON MY NECK STRENGTH. A HI GOES OUT TO ALL MY SPECIAL FRIENDS THAT I MISS AT THE FAIRVIEW NICU RESORT & SPA. HI TO MARY JO, KRISTI, MELANIE, PAT, SARA AND MANY OTHER AWESOME NURSES AND DOCTORS THAT TOOK SUCH GOOD CARE OF ME.
BYE FOR NOW....LOVES, HUGS, KISSES AND SMILES!!!
CARLY MAY
Friday, October 29, 2004 11:47 AM CDT
BOO! Happy Halloween Everybody!
First of all I have some new pictures of me but my daddy forgot them today < I promise they will be coming soon. Things have been going pretty well. I had my first therapy session yesterday. The teacher and occuaptional therpaist came to my house and did an assessment. They got me on my mommys big yellow exercise ball to work on strenghtening my neck. It was quite fun, I wll have to get a picture of that! Ha! Overall, they say I am doing well and quite an active little baby. I scored in the average range for my age on my development. My mommy was very proud of me, I did things real good! I am even strarting to talk and coo some and let my mommy and daddy know when I am happy, playful, hungry or have a poopy diaper!
I also saw the cardiologist this week and she was a little concerned about my blood pressure in my lungs. They want to be seeing a gradual trend of this blood pressure getting lower and it is staying the same. The doctor doesn't know if it is from the four small holes in my heart (ventricular septal defects) or just due to my pulmonary hypertension in my lungs. So for now they increased my blood pressure medication and started another diuretic called aldactone which should help with fluid retention and the blood pressure. Hopefully over the next few months things will start to normalize. The doctor said by six months of age I should be at my strongest. Next month I will have another echocardiogram of my heart and that will determine if I need to have a procedure called a catheterization where they will put a catheter in me near my heart and lungs to meaure the pressure. Hopefully I won't have to have this. But if I do this would help the doctors determine if my holes in my heart (VSD's)is the cause of this high pressure. If so, they would need to be eventually repaired. We are keeping hopeful beacuse that would be an open heart surgery. Anyways, I need a few more prayers to get me through these next few months.
I also saw the ENT doctor and they want to do more of an extensive hearing test that is done in the operating room under anasthesia to rule out any permamnent hearing loss but want to wait until I am off the oxygen and stronger. Right now we are looking to do that at aprox. six months > January. Hopefully all that turns out well too.
My grama Patsy was here last week and we had soooo much fun. We played and went shopping and she fed me many times and let my mommy sleep, which was so nice. She also changed my diaper many times. One morning she changed my diaper and my outfit three times in a matter of hours. Ha!
My other grammy Diane is coming next Saturday for three wekks to take care of me. My mommy is going back to work, BOO-HOO!I can't wait to see her.
Annyways, Love to all of you and I wll get on my daddy to update to picture album.
Talk soon and hugs and kisses!
Carly May
Friday, October 29, 2004 11:47 AM CDT
BOO! Happy Halloween Everybody!
First of all I have some new pictures of me but my daddy forgot them today < I promise they will be coming soon. Things have been going pretty well. I had my first therapy session yesterday. The teacher and occuaptional therpaist came to my house and did an assessment. They got me on my mommys big yellow exercise ball to work on strenghtening my neck. It was quite fun, I wll have to get a picture of that! Ha! Overall, they say I am doing well and quite an active little baby. I scored in the average range for my age on my development. My mommy was very proud of me, I did things real good! I am even strarting to talk and coo some and let my mommy and daddy know when I am happy, playful, hungry or have a poopy diaper!
I also saw the cardiologist this week and she was a little concerned about my blood pressure in my lungs. They want to be seeing a gradual trend of this blood pressure getting lower and it is staying the same. The doctor doesn't know if it is from the four small holes in my heart (ventricular septal defects) or just due to my pulmonary hypertension in my lungs. So for now they increased my blood pressure medication and started another diuretic called aldactone which should help with fluid retention and the blood pressure. Hopefully over the next few months things will start to normalize. The doctor said by six months of age I should be at my strongest. Next month I will have another echocardiogram of my heart and that will determine if I need to have a procedure called a catheterization where they will put a catheter in me near my heart and lungs to meaure the pressure. Hopefully I won't have to have this. But if I do this would help the doctors determine if my holes in my heart (VSD's)is the cause of this high pressure. If so, they would need to be eventually repaired. We are keeping hopeful beacuse that would be an open heart surgery. Anyways, I need a few more prayers to get me through these next few months.
I also saw the ENT doctor and they want to do more of an extensive hearing test that is done in the operating room under anasthesia to rule out any permamnent hearing loss but want to wait until I am off the oxygen and stronger. Right now we are looking to do that at aprox. six months > January. Hopefully all that turns out well too.
My grama Patsy was here last week and we had soooo much fun. We played and went shopping and she fed me many times and let my mommy sleep, which was so nice. She also changed my diaper many times. One morning she changed my diaper and my outfit three times in a matter of hours. Ha!
My other grammy Diane is coming next Saturday for three wekks to take care of me. My mommy is going back to work, BOO-HOO!I can't wait to see her.
Annyways, Love to all of you and I wll get on my daddy to update to picture album.
Talk soon and hugs and kisses!
Carly May
Saturday, October 16, 2004 7:20 PM CDT
Hey All-
I made it a whole week without a trip to the hospital!! YEAH! Although, I went and met my pediatrician on Wednesday, since then I have been back to his office two more times. My nice doctor started me an a nebulizer treatment to help dialate my lungs and help me breathe better, he thought that would decrease my need for oxygen and not make me wheeze. It has seemed to help a bit. Then yesterday I had to go get my electrolytes checked (because I am still on banana daquiris (potassuim) and margraritas (sodium) regularly, so yes another poke in both heels and arm---yes... I was being stingy with my blood. Anyways, things look pretty good. I am gaining weight like crazy--pushin' 7.5 pounds...mama has some rich milk! HA! I am also eating more and doing real good with eating by the bottle. I still use my tummy tube for my meidcations and during the night when I am real tired. It is so nice, my mommy and daddy let me sleep.
Well, it has been a fun week, we had a few outings beside the doctor. I went and had my hearing tested and have to go back again soon. I might have a mild conductive hearing loss which could just mean it is temporary. It is common with Down Syndrome to have a build up of fluid in the ear canal. I will keep ya posted! I also visited my mommys co-workers and the doctor that delivered me. I spent alot of time exploring the world from the carseat in my mommy's porsche...Ha (She wishes)!
Anyways, Both my grammas are coming to visit me soon. My Grama Patsy is coming on Thursday for a week. It will be a blast snuggling with her and meeting her for ther first time. Then my Grammy Diane is coming the first weekend in November to take care of me for three weeks while my mommy tries to go back to work. BOO-HOO!
I am always asking my daddy to put more pics of me so you can all see how I am growing. Again thanks to all of you for your continued support and we will try to update this weekly! I gotta go take a bubble bath with my rubber ducky that my friend Ella bought me. A Hi goes out to her too.
COOH-COOH!!
Carly
Sunday, October 10, 2004 9:33 PM CDT
Well, I just found time to let you all know that I am home AGAIN from the hospital. We came home on Thursday and now I am feeling much better. I got some "juice" for my body (AKA: a blood transfusion)on Wednesday and I am now very pink and healthy. Now when I cry or get mad my face turns purple instead of red like it used to. HA! I also now have some reflux so I started another medication and then my bassinet and crib have to be elevated so I sleep in this sling so I don't slip to the bottom of my bed, its kinda fun. I also went home on an extra dose of my diuretic (Lasix) to help with the fluid build-up in my lungs. My doctors did not think I was having any heart failure becasue of this, thank God! I am still reqiuring some oxygen to help me grow and get big --I haver to laugh because many times a day my mommy and daddy trip on the tube. It's really long so I can go anywhere in the house.
My home health nurse was out to weigh me yesterday and I am a whoppin' 7 pounds. My days are so fun,but busy. It seems like all I do is play, sleep, eat and all the fun things I am supposed to do at home. I love my swing and bouncy chair. I saw my nice neighbors Pat & Dave from the window hopefullt they can come play with me soon. My mommy and daddy sure are elated to have me home, even though sleep is a thing of the past. But the routine is getting better and more smooth. My mommy and daddy also play pharmacist, hopefully not for long. I am on a strict medicine schedule, 6 medicines in all, some with each feeding every three hours. Hopefully some of them will be stopped soon.
Anyways, I gotta go swing a few more times and then eat some milk. Oh and I think I am getting another bath tomorrow, I will see if my daddy will put a picture of me in my birthday suit in my tub! What fun...
Talk to you all soon..
Love, Carly
Monday, October 4, 2004 9:43 PM CDT
Hey Everyone---
It has been so much fun playing in my room with my mommy and daddy. I had been doing really good the last few days, eating every three hours and lovin' life, even though sleep deprivation finally set in for my mommy and daddy. I have gotten to sit in my new swing, which I love and lay on my daddys chest in their BIG bed and watch football. What fun!!
My nurse came yesterday to visit me and do an assessment as well as check my weight, take a blood pressure, check on my oxygen and do all that other nurse stuff.
My auntie Erin has been here the last couple days to help my mommy and daddy and play with me.
Yesterday I started to catch a cold and become really "stuffy", which I needed more oxygen. So my mommy and my aunt Erin brought me to the doctor. While we were getting ready to go the UPS guy was standing at the door with a package and caught my auntie Erin walking up the stairs with her bra on. So, she had to go back to the door to retrieve the package after putting her shirt on and feeling a little embarrased, the man said it was the fringe benefits of the job....to catch people coming out of the shower. My mommy said we all need a little humor in times like these.
Anyways, my doctor decided to put me back in the hospital to be monitored for respiratory distress and the fact I'm reqiuring much more oxygen. They ran some blood tests and my hemoglobin was low. They might have to do a blood transfusion if I don't get better soon. Also, my chest x-ray showed some fluid on my lungs so I will get an extra dose of lasix and my x-ray will be repeated tomorrow. Hopefully this is just a cold and upper respiratory problems--hoping to back home where I belong by the weekend.
One of my favorite nurses Mary Jo was there to greet me and take care of me. It was great seeing them again but not under these circumstances. I am back with my buddy Ella Blom- she is a baby that I am in the NICU with that was born almost three weeks ago with Down Syndrome also. My parents met her parents when I was first born and we have become friends and a support for one another. They are hopefully going home soon and maybe we aren't far behind them. Please say a prayer for my frind Ella and her family when you say a prayer for me- her family has been so very nice to my mommy and daddy. One of these days I will have to post a picture of me and Ella playing.
Also, one more thing...today I have doubled my weight since I was born:3 pounds 7 ounces to 6 pounds 14 ounces... can't ya tell by my chubby cheeks. Yeah!
Anyways, I better go, it has been a busy and tiring day and I need my beauty rest.. I will keep you updated and hoping to go home soon for try #2.
Love, Carly
Wednesday, September 29, 2004 1:34 PM CDT
PARTY TIME.......Break out the "spiked" milk or for you adults - the champagne!! Ha! I am FINALLY going home tomorrow and hopefully I do not jinx myself. I have been' eatin and poopin real good. My plumbing is starting to work on its own without any help from prune or pear juice and have not needed a silver bullet in a few days. Right now I am telling my mom what to write beacuse I am in my snuggly car seat having a trial to make sure my heart rate and my oxygen saturation does not drop.
IT"S BEEN A BUSY DAY>>>>>
Also, I had my picture taken and my mommy will be sending those out soon. My mommy is learning how and when to give me all my medications. WOW- more banana daquiris and margaritas. My mommy and daddy also got trained on the oxygen yesterday. My doctors want me on it for awhile to help me grow. Also, my belly tube is healing well, I have been' sleeping through the nights so it has been nice to get my food right through my tummy and I don't even have to wake up. HA! I think mommy and daddy have appreciated me sleeping too, casue then they can sleep. Well kinda--My mommy still gets up and looks at me when I am rustling to make sure I am alright.
During the day I have been' taking my whole bottle like a big girl and did't have to use the tube. Getting stronger everyday!!
Anyways, I gotta run (well not quite yet) my mommy is gonna give me a bath---yipee! This will be the last letter from the NICU Resort & Spa but next time I write, I will be in my room surrounded by frogs, butterflys, ladybugs and dragonflys and best of all my mommy and daddy.
Again thanks to all of you for writing in and praying for me and sending me so many darn cute things, I am on to my next journey!!
Love Ya!
Carly May
Friday, September 24, 2004 10:03 AM CDT
GOOD RIDDENS to surgeons.....even though he was very nice and completed my surgery without a hitch and it only took an hour. Hopefully now procedures are only a thing of the past. I only needed that yucky ventilator for five hours and then I was free. I got a little morphine for pain but now just on some Tylenol. My throat is sore and dry from the ventilator but hopefully that will be better tomorrow. My belly looks good and the tube will be pretty nifty, now my mommy and daddy need to learn how to use it.
The talk is I may be home by next Wednesday, give or take a day!!! I can't even believe it....YEAH>>>>>>
It's just a matter of getting my feedings back up to where they need to be and my mommy and daddy learning how to do all the little things that I will require when I go home!!
My mommy and daddy are so elated too!
Anyways, we will keep you posted on the road home and more pictures should be coming soon!
Gotta Go play .....
LOVE, CARLY
Wednesday, September 22, 2004 6:33 PM CDT
Hey all, I am just chillin' out listening to my music and lookin' at my fishes. I just finished my margarita with a salted rim (sodium) and downed a banana daquiri (potassium) along with some milk. What a good dinner, quite a combination wouldn't you say....
Anyways I am so proud of myself...the last couple days I have been' doing real good eating like a big girl. I have even been taking my meds by mouth. They upd' the prune juice and I am still getting the silver bullets (suppositories) but poopin' better. I continue to mysify the doctors why my tummy got so big last week. They think it will just get better with time, and it is mch better this week....my beer belly is smaller than my daddy's now.
Even though I have been eating real good I am going to have to eat more and more in order to grow big and strong and I still get tuckered out at times but my endurance is improving everyday. Anyways... I am having surgery tomorrow morning (Thursday) to get a tube in my tummy that will make life in the Harris household a little easier. My mommy and daddy will be able to put my meds in that so mama's milk doesn't taste like sour milk and then I can polish off my meal in my sleep if I choose to do so....how nice. My mommy says she wishes she could eat in her sleep that way she could spend more time playing with me. Ha!!!
It should be a routine procedure, I will have to be put on the yucky ventilator again but hopefully just for 24 hours or less. If all goes well---I may be able to go home next week. Oh.. my gosh I am so excited to see my room and to start checkin' out my lakeville neighborhood for good lookin' babies or if I want to rob the cradle I will settle for a toddler. Ha!
Anyways---pray fro me tomorrrow and hopefully this is the last set of prayers I will need in a while. Thanks again to everyone that is keeping up on my progress and excitement at the NICU resort and spa. They will be naming one of nurseries after me pretty soon if I don't get out of here.
Looking forward to more margaritas and banana daquiris after my procedure and hopefully I will be chatting with alot of you in person real soon.I will keep you posted.
Signing off for now....
Princess Carly May.... oh and love ya too!!!!
Hi to my grammy's in Montana!!!!
P.S. My mommy added a new picture of me, look at the last one!!
Sunday, September 19, 2004 4:22 PM CDT
Hello to all my friends and family- I am continuing to take my mom and dad on more rollercoaster rides. Well actually the doctors gave my mom and dad quite a scare the past couple days.
I had a biopsy on my colon on Thursday to see if I had a disease called Hirschsprung's. We got the results back on Friday that I did indeed have this disease. It is when the nerves do not intervate the colon correctly and therefore stool cannot move through the colon. So I was scheduled for indeed ANOTHER surgery to get a colostomy. During my surgery they would then be able to tell if I needed this colostomy temporary or permanently. If I needed it only temporary I would have needed surgery again in 6 months or so to repair this. BUT........ when my mommy and daddy came to the hospital on Saturday morning to see me,the doctors told them they had made a mistake and that I did not have this disease and would not need surgery. WOW!!! My mommy and daddy both cried because they were so happy. What had happened was the person in charge of relaying the results to my doctors was asian and did not speak very good English. The final report was finally read and confirms I do not have Hirschsprung's. It was a very hard 24 hours for my mommy and daddy. WE are all sooooo relieved and thankful. Now were doing some other things to find out why my belly gets so big. But we now know it's not the worst case scenario.
The last couple days I had to stop eating again and had to get my nutrients through IV, but yesterday I started eating mama's milk again and I am doing pretty good.
Well, we hope that is all the scares we will have. It maybe only 2 weeks away before we go home. We will keep you posted on this week's happenings. Let's hope for a low key week.
Hope to get out some new pictures of me too!
Take Care and Love Ya!
Carly May and mommy and daddy too.....
Wednesday, September 15, 2004 2:31 PM CDT
HEY All.....it's PRINCESS CARLY!!!!
Sorry I haven't written in a while but my week has been kinda busy.
First of all, the sleep over with my parents was really fun, I'm glad they were there to look after me. But I think my mom is a little paranoid becasue so many times during the night she would come over and look and listen to me to make sure I was alright....even though I have monitors still hooked up to me. Ha! I thought it was kinda funny...
I sure didn't eat much... I was protesting because I knew it was an experiment to see if I demanded food or not. I didn't cry much or get too fussy. Because I didn't eat much, during the nights I was fed with a continous drip to make up the difference and my tummy GOT SO BIG. They had to take an x-ray and I was full of hot air. I have a tendency to keep alot of air and gas in my tummy and the doctors are not sure why. I also got thrush in my mouth and it hurt to eat. That hopefully is getting better since I am on medication now.
So yesterday I went for two field trips, one was not so fun. First I had to have my behind (large intestine) scoped to look for anything wrong. It was kinda uncomfortable. Then I had to go get an MRI of my spine to make sure the spinal nerves looked okay that go to my intestines.The results of my MRI are good but they want to do more procedures on my behind.
Today the tummy doctors are coming to see me and taking a biopsy of my bum. They will be looking to see if the nerve endings have formed correctly. They told my mommy that if the nerve endings do not intervate properly then my large intestine/rectum can't push things out as effectively and maybe that is why my tummy gets really big and full. It is also maybe why I am not eating as well as I should because I am always bloated....who wants to eat when they feel bloated. The doctors also may have a hunch that is why I am still needing a little more oxygen to help me process everything.
With all these tests, we should know something by Friday and have another plan of action. Another roadblock before home. I just want all the attention around here and I need every organ and body part checked out before I leave because I am not entering another hospital again if I have anything to do with it. My mommy and daddy and me hope and pray for the best because I don not want to have another surgery.
Well, I hopefully will have good news to report next time and for now I am going back to my palace and should be gaining rank to queen.
See Ya!
Love, CARLY
Thursday, September 9, 2004 5:55 PM CDT
Another Week down and hopefully not many more to go before I blow this popsicle stand!!
I have had a pretty good week, basically I am trying to work on feedings from mommy and a bottle. Some days are better than others. I am supposed to have about 40-45 mL every 3 hours. I have been taking on average between 11-25 mL per feeding. My record is 30 mL at one time before I tucker out. (My mommy and daddy were very proud of me and I was proud of myself too, I smiled when I was done).I still get tired pretty fast but I am gaining endurance every day. I am now weighing 5 pounds 3 ounces. I have already outgrown a couple outfits. I also still need some oxygen but the flow going into my nose has been decreased. It makes my nose really dry and yucky. My mommy says I snort sometimes! HA!
Anyways--this weekend will be WAY cool!! My mommy and daddy are coming to the NICU resort and spa to have a sleep over for the weekend. We are going to try more attempts at feedings and I will give my parents a little taste of what parenting and sleepless nights are all about....HA! Do they know what they are in for? Anyways I will report back next week on how they did!
My heart doctor came and saw me. She said my heart and surgery site looked great and my blood pressures are improving. Hopefully not too much longer on my blood pressure medication. The four small holes in my heart are still not a concern to her and hopefully will close within a few months to a year.
OH and guess what...this is really funny....they started to give me prune juice to help lubricate the plumbing. I am getting a little treat already! YEAH!
Hope you all out there are doing well and I will touch base next week with more pictures!!
Love Ya and Lots of HUGS & KISSES!
Carly May
Thursday, September 2, 2004 11:31 AM CDT
Hi again...... it's Carly!
I just woke up from my morning nap. Can you believe yesterday September 1st was the day I was SUPPOSED TO BE BORN. Wow, I have done alot of things and seen alot of different people in my first six weeks and wasn't even supposed to be here until now. Ha Ha, my mommy and daddy have gray hairs already. Don't tell...but my daddy has more than my mommy! HA!
Well, I hit another milestone. Yesterday, I took 4 cc or mL by bottle and this morning I took 15 cc. I am still working on the breast feeding but thats a whole different ball game. I still get pretty tired and get the rest of my food by my tube but hopefully everyday will get more and more.
My cardiologist will be coming to see me today or tomorrow. I am still reqiuring oxygen and they think it is because I have those four small holes in my heart and my heart has to work even harder to shunt or pump the blood properly. So I will probably need a medication to help my heart pump and hopefully the need for extra oxygen will go away. Then, with time the four small holes should close. Let's hope...
Anyways, I need to go get ready for my photo shoot. My mommy is about to take some pictures of me in my cute outfit and my bonnet and she will post them on my website.
I will talk to you all later and hopefully I will have more good news to report....COO---COO for now! That's bye-bye in baby language!
Love Ya! (a special kiss and hug go out to my grammy Diane and Grama Patsy)
CARLY :>
Monday, August 30, 2004 9:09 PM CDT
HI TO ALL!
Sorry it has taken me so long to journal but I have been busy partying with my fello spa members. Finally...I got all the big tubes out of my nose to help me breathe. On Saturday the nurse took the C-pap out of my nose. They had to keep it on me because my lung had collapsed but that is better now. They did this treatment on me where they blew medicine into my nose and mouth (it was like steam) to clear out my lungs and then they pounded (it wasn't too hard) on my chest and back to help loosen things up. Wow... I am finally coughing and crying....which is good for the lungs. For now though I still need a little help with some oxygen but the prongs up my nose are not near as large as that other contraption. Also, I met a big milestone last Thursday.... I started eating mama's milk again (still by a tube) and I started at 5 milliliters and today I am at 40. They had to go up slow because my intestines got hurt during my surgery and the doctors had to make sure my plumbing was working good. All is well on that end!!! Ha-Ha! Hey, I also tried to get some food from the milk truck (as daddy calls it) today. I really wasn't sure what to do and still kinda weak from everything but I am very interested. (My mom said sorry for the visual.) I will keep trying and hopefully when I am able to do this and thrive and also breathe on my own I can go home with mommy and daddy. I also am free of any needles and IV's. Last week the IV that I had in my neck started to leak, so then they had to put one in my arm. Then that one clogged up so over the weekend they had to put one in my head. Finally today they took that one out because now I am on full feedings and do not need nutritional supplements and can have my medicine in the milk that goes in my tummy. Wow.. I think I have been poked every on my body. My mommy and daddy say I am very tough and when it is time to get my immunization shots I will probably laugh at the doctor>>>Ha! Anyways I am up to 4 pounds 13 ounces and growing fast. My mommy started to dress me again and some of my preemie clothes don't fit....but I guess that is a good thing..
Hey want to make a shout out to my buds in Colorado>>> Mason and Arden, thanks for writing in. Looking forward to those milk shakes and baby bach or whatever is playing that day. I think you are cute too I saw your pictures on the website. Also hi to my new cuz Max in Las Vegas.
Well>>> I need to get back to the festivities, I wouldn't want to miss any gossip or action. I just got two new neighbors... I think they are both boys, LUCKY ME!
Tood A Loo for now!!!
Love, Carly May (and mommy and daddy too)
Monday, August 23, 2004 9:57 PM CDT
Hey Everyone It's Carly!!
I am continuing to recover from my surgery. Last Thursday I was transferred back to the NICU where I started out. It was kinda a rough couple days but I am making steady progress now. I got my ventilator out yesterday and now I have to wear this thing on my nose to help me breathe called a C-Pap. I still have some fluid in my lungs but hopefully over the next few days I will contiue to stabilize and get this yucky tube out of my nose. The doctors were also worried about my kidneys not working well because I wasn't peeing like I am supposed to. That is better now since they gave me some medicine. Now I am soaking the diapers with the best of them. Ha! Best of all... my mommy got to hold me for the first time in 8 days, it was so nice to cuddle...I was so comfortable I slept the whole time. Since I kinda had a scary day yesterday my grammy stayed some extra days to make sure I was doing good.
Oh... I am supposed to tell you from my mommy and daddy that they (and me) want to thank everyone again for the prayers, thoughts and love that has poured out from all over. Everyone's concern has made us realize how truly loved we are and that makes this rollercoaster that much easier. You all will never know how much it means. Thank you from the bottom of our hearts.
Love, Carly (and my mommy and daddy too)
Wednesday, August 18, 2004 1:17 PM CDT
Hey Everyone I'm Back!! (and I am one month old today)
I had my heart surgery on Monday, the doctors decided quickly to do it that day so my mom and dad didn't have time to inform you all. I was in surgery for 8 hours, the surgeon who has magical hands had to repair more on my heart than he had originally thought. My surgery should have only taken two hours but once they closed my PDA duct I had no blood pressure or flow to my lower body so they had to expand my aorta by using the subclavian artery out of my left arm to help incease that flow. I was then stabilized a couple hours later. I am now out of the most critical time (the first 24 hours) but the first 3-4 days is more of a true indicator on how I will do. I am getting help breathing, they stick this yucky tube down my throat called a ventilator. My rates keep going down which is good and I may be off this by tomorrow. Yeah , then I can kiss my family without my lips puckered and tape around them. They also took my drainage tube out of my lung yesterday because I had no drainage. One less tube coming out of my body....Yahoo... They give me mediciane for pain and something to sedate me to keep me tired so I don't move around alot. But.... I saw my mommy and daddy this morning for about 20 minutes. I had my eyes open checking things out... Wow there was lots of tubes and machines. My mommy and daddy brought music in for me to listen to...no rock -n- roll yet just some lullabies. Overall, yesterday was kinda rocky - the doctors had some concerns about my belly and my intestines working right, but my blood didn't show any infection and by plumbing seems to be working better today. HA! They also gave me medications to help stabilize my blood pressure and that is better. There's other things they are trying to stabilize on me but I'll do that on my own pace and let the doctors know when I am ready to go to the next step. I don't get any milk yet until they know my stomach can digest it, so for now I have to settle for lipids and nutrition that they put in my blood. Before my surgery one of my favorite nurses Mary Jo gave me banana daquiris (potassium) and margaritas (sodium). I can't wait to get the reall good stuff--mommy's milk! Tha ambulance driver who transported me and mommy on monday took a look at all the containers of my moo milk and said....mom's been busy! Ha! I thought that was funny!
My mommy and daddy say that I am a fighter and I'll keep getting strong....and I heard them say I can have anything I want when I get out of the hospital....Boy I'm going to take advantage of that. HA!
Also, my grammy from montana came back to see me and my auntie erin and my great aunt Joy have been here to see me get better. Anyways, Iam getting kinda sleepy agin so I better get back to my bed, my nurse may wonder where I went..Love to you all and thanks for praying and thinking of me, it means alot! My mommy and daddy say hi too and says sorry if they don't call you back right away.
Talk to you all soon...Love Carly
Monday, August 16, 2004 2:02 PM CDT
Hey Everybody....
Carly here and just letting you all know I moved to the another part of the hospital to get ready for my surgery. I had my first car ride in the ambulance with my mommy this morning. It was fun....Then I stayed awake for three hours playing with my mommy. I have been doing better the last two days. My mommy and daddy will be talking to the surgeon today and I will be going to surgery probably this afternoon sometime. I am kinda scared but I am in excellent hands,,,,so I will be talking to you all soon. Oh and I will have to get my daddy to post more pictures...sorry--They have been kinda busy lookin' after me. Pray for me and for all of you that have wrote to say hi I can't wait to meet you in person.
Love Ya and See Ya later... Carly
Wednesday, August 11, 2004 3:13 PM CDT
HI All!
I just got done eating lunch with my mommy. I was awake for it too, it was fun. I looked at my mommy for a long time. Her and the nice nurse took pictures of me. I am starting to be more alert but I still sleep alot. My mommy and daddy talked with the cardiologist on Monday and I will have my heart surgery pretty soon. I need to be between 4.5-5 pounds. Right now, I am almost 4 pounds. This will probably take two to three weeks before I am that big. The doctors think they just need to close my PDA and will not have to repair my aorta. They think there is enough room for the blood to flow through and go yo the rest of my body. Yeah! But the surgeon will look at this during my surgery and repair it if needed. Anyways, for now I am just hangin' out with all my friends. I am able to hold my own body temperature so they moved me into a big girls crib but they keep me bundled in blankets. I still need oxygen and last Friday they started me on some medication to make me go pee often to get the fluid out of my lungs and a medication to help my heart pump better. Since then I am breathing better. Anyways, I will try and get my daddy to put some new pictures of me on the website, Iam getting chubby cheeks.. Anyways, hope all my friends and family are doing well and my mommy and daddy say hi too!
Love, Carly
Thursday, August 5, 2004 8:36 PM CDT
Hi from Carly and Friends at the Fairview NICU Resort and Spa. It's not quite beachfront property but it will have to do for now....
I am still needing a little oxygen because my heart is working hard to pump blood to my body. And.. the food is great, I get it from my mommy but by a tube that goes into my belly. I love to suck on my pacy, more so the last two days. Yesterday, I stayed awake for two hours and played with mama, dada and grama. We made faces at each other and my daddy tryed to get me to say "Who's Your Daddy?" but I just smiled at him.....he's funny!
Anyways, Jim the guy who looks at my heart every week came on Tuesday and nothing has changed. My PDA valve is still "Big" so they are going to try and get me a little bigger and then may try some medication to close this valve. If that does not work then I will have to have surgery to close this... then I am going to the beach! Yeah... Also the cardiologist thought that my aorta wasn't as restricted as originally suspected, but they are not 100% sure. So if I have to have surgery to close my PDA valve they will look at my aorta too and fix at that time. I know the doctor will do a good job but it's kinda scary. But the nurses are really nice here and take good care of me. Tomorrow, my mommy is going to clip my nails beacuse they are getting very long. I am ready for some pink polish soon. Oh.. and you should see my outfits I have been wearing. I am one stylin kid. My friends and family have spoiled me. Thank You!!! Anyways, I better get going because my diaper needs changing and I will stink up the party room if I continue to sit here and chat. We will talk soon...
Love you all..... Carly:>
Sunday, August 1, 2004 7:42 PM CDT
Hello to all!!!
Daddy is holding his little girl and I have a moment to update you on Carly. Not much has changed, the doctors will look at her heart again this Thursday. She is eating, pooping and sleeping.....everything she is supposed to do... and it is paying off, last night Carly weighed 3 pounds 11 ounces---so she's getting bigger. She looks stronger everyday and of course she is cuter by the day as well. I have to say... the nurses comment on her daily how adorable she is and they call her the princess and she has her own room(the palace). Everyone here at the hospital is wonderful. Anyways, grama, daddy and mommy are here every day playing "photo shoot", reading books, and playing "camping" (we call her isolet her tent) with all her friends: hippo, monkey, tigger and lamb. Anyways, all is well and no real changes. We like Carly to be low maintenance and that is exactly what she is doing...Yeah!!
Love, Maria
Wednesday, July 28, 2004 10:40 PM CDT
Happy Birthday to Carly! She is one week old today!
I am now just getting a chance to journal a little about the past few days that has forever changed our lives and enriched it for the better. We first want to thank all of our special family and friends for everything. All your love, support, encouragement, kind and reassuring words means so much to us...it has gotten us through and will continue to do so. Also, all the wonderful flowers/plants and gifts for Carly has been overwhelming...and we thank you.
Carly was born 6 weeks early at 34 weeks. Her personality came shining threw when she decided to kick a hole and break my water at 31 weeks. I was in the hospital for 3 weeks on bed rest. She is already ruling the Harris household. We now have seen for ourself her feisty
personality and her willingness to be strong. Carly likes to already wiggle out of her diaper, pull out her feeding tube and oxygen tube. She has a mind of her own and likes to do things at Carly's pace.
Carly was born with a "big" heart (and literally). She has 4 holes in her heart that the doctors say will likely close on their own and may not cause any problems. However, Carly also has a narrowed aorta which could constrict blood flow and will likely need heart surgey to correct this. We are currently waiting for another part of her heart to close that usually closes 3-4 days after being born to know how soon she will need surgery. However, again Carly has decided to do things at her own pace. So for now we will visit her daily, hold her, cuddle her, love her and wait for things to change so we can go to the next step. Looking forward to the day we can bring her home.
Please continue to check back as we will try and keep you all posted with updates on her progress and pictures. We have been blessed with the most beautiful baby and feel so proud to be her parents. I hope all of you will someday soon meet her. Anyways, I gotta go deliver milk....Ha! Ha!
Love, Maria
Friday, July 23, 2004 11:18 AM CDT
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