100 days 100 nights

Have you ever wondered what heaven, would be like?
Is light is dark. Is cold or is it just right???

Kennedy Fallyn has been there 100 days and 100 night on November 3-4. For a new mom it's scary. Is she ok who is holding her, is she eating enough. Yes I know she is ok but you don't believe it until you see it. As these day come up I ask that u post a picture of 100 something anything.

I challenge you to do this and as you do this remember to spread CHD AWARENESS.

Post pictures to her Facebook page. Kennedy Fallyn... 100 of something.

Don't be a statistic

Congenital heart defects are the most common type of birth defect in the United States, affecting nearly 1% of―or about 40,000―births per year.1,2

The prevalence of some congenital heart defects, especially mild types, is increasing, while the prevalence of other types has remained stable. The most common type of heart defect is ventricular septal defect. [Read article]

♥ Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

♥ Congenital heart defects are the #1 cause of birth defect related deaths.

♥ This year almost 35,000 babies will be born with a congenital heart defect. 3,500 of them will not live to see their first birthday.

♥ 91,000 life years are lost each year in this country due to congenital heart defects.

♥ The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

♥ Congenitalheart defects occur frequently and are often life threatening, yet research into them is grossly under funded.

♥ Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

♥ In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

♥ More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

♥ There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.

♥ In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

The littlest angel!!!

I remember watching this movie with kids when I worked at a daycare. I never thought I would be living it. I never thought I'd be watching my husband go through this either. As the holiday season approaches I ask, don't fear talking about her, or even getting her a gift. Get her a book or something I ca read or do with our next child. I prefer books but that really up to our family. If everybody wants you can buy her the littlest angel, yea I know that would be a lot but if you put your name and how you were touched by Kennedy's story, each book would mean something different. So don't be afraid to get our" littlest angel" something. It would actually mean a lot to us!!

I do it all for you Kennedy Fallyn

Chocolate milk!!

The only thing worse than having a dream about your angel daughter........ is having to wake up!!!!

Lately I have been having a dream about chocolate milk!
" Kennedy is a year or so, begging and asking for her milk, I want my milk momma. I go to get her milk and she is gone. I go searching for her she is no where. I call the hospital... Just as a precaution and she is there asking the nurses for her milk!!!".......... Then I wake up.
I can only imagine what Kennedy would have looked like. And with the twilight premier coming up I want to say the little girl playing the little girl looks ALOT LIKE KENNI!!!!


Here is my husbands dream( he never remembers his dreams)
"I was sitting at a playground. And I was watching a little girl playing at the park...then I heard a loud voice call her name and I looked to see who it was and I could not see his face...but I knew who it was."

A whole DIFFERENT language!

I thought I might show everybody want a 23 and 26 year old have learned in the past 5-7 months....

When you stop am think about abbreviations...lol, tmi, lmao.... You think current hip talk. Well not in the world if hearts. HLHS= hypoplastic left heart syndrome( smaller left ventricle and other left heart functions) MS= mitral valve stenosis ......... Those were Kennedy's diagnosis. Here are some others

When did tummy tubes get so hot????

When heart baby's made them look that way. Kennedy had tubes coming what seemed to be every hole. While most new parents are playing dress up we were playing touch and go. She tryed to go to heaven once before she actually got To go.

Past couple of montages have been a complete journey for me and my husband. Learning what meds do how come there were 5 tubes and last night there were 3. How low the ventilator was? When we could hold her again? How come she on her tummy? What life outside the hospital ment for us? Quality of life? How come she's doing this and not that???

Lots of questions in which the lovely PICU nurses answered. They were our life line into the crazy heart world!!

<3 Huggs

The day ill go to earth!!

Tell me again father, about the day I'll go to earth, tell me about my mommy, how she's waiting for my birth,
How she smiles when she thinks of me,rubbing her belly with pride, how she prays for me each day and night, as I stay safe inside, How she cries because she knows I'm sick, but hopes for me no less, How she kneels beside her bed each night, while praying you know best, Tell me again father about the dad you have assigned, Will you teach me to be strong and sure, but also to be kind, will he show me that all things in life are surely worth the fight? will he hug me when I'm hurt, and teach me wrong from right, tell me again father about the perfect plan, I cannot wait to go there, I'll help them understand how very much you love them, in good times and in bad, and when they see my face father, I know they will be glad, for each and every moment is a testament of love, My smile may remind them,that the answers are above, Please tell them my father when they come the tears, that you understand the pain they face, then help ease their fears, tell them even when it's dark, a light will lead the way, then put your arms around them, And listen while they pray, please remind them father, As I long for them to know, that you're holding me so gently, and you never let me go, that even when they're angry, at the trials they must face, My life is a reminder, of your most amazing Grace, just one last thing I ask of you, I'll only ask one time, tell my mommy and daddy, I'm glad they were MINE!!
~Stephanie Husted



I can only sit and imagine what Kennedy would have been like, while others get to see and hold there child. It's the small things I am going miss out on!!

Loves all the way to heaven and back.

Just once

I think I might give up on ever having a child!!!! Life is sooo unfair all I want is one healthy baby! I am not asking to be a millionaire!!!

I could care less about defects I just want a baby. Why does it have to be so hard.

Fight!!!!

Life is unfair!!!! Just thought u should know that.

Imagine going to the hospital, going to have a baby....and coming home empty handed. That's what I had to do. I had a 5lb 13oz little girl, whom yes had a broken heart. But we expected for her to come home a few weeks to months after her surgeries. Imagine having to tell a little boy who expected to see his kenni not bury her. Imagine going into an empty room you had just prepared for her. Imagine having to explain to your siblings that there niece wasn't going to make it. Imagine telling "happy" grandparents they would never get to spoil her. Imagine planning a life without the child you longed for and got and was taken back. Look at your children, say Kennedy's name "Kennedy Fallyn Thomas-Fuller", now look at your children again, be grateful for what you have things could always be worse!

People may thing but never ask, how come you brought Kennedy into the world knowing she would have issues...... My response if you were wondering....... My daughter had every reason to fight, I wanted her here so she could show me how to fight, she fought long and hard. Each day was a struggle, ups and downs. If your child has a chance to fight.... So did mine. She had a right to live just like you or I. My daughter had a 1-100 chance of being a heart baby, when she went to have kids she would have had a 25%chance of a heart baby. We have a 5% chance of having another heart baby.., scarier you have a 2% chance of having one SCARY I know.

Do me this as you go though the day and your child does something they shouldn't, give them a hug don't yell, you never know when there last little moments will be up!!!!

The Green Monster!!

People ask all the time if I ever get jealous of someone who has just had a baby....... Truth.......... YES. Sometimes I wish that a new mother could go through 1/4 of what I went through maybe they would appreciate their child just that much more.

Who thinks when they are young that they will have to explain where there first child is to there other children I mean I am to young to be a mom to an angel. I have something no other mom wants or needs. But I wear my wings with pride for my daughter.

If you ever want to know what it's like to be a mom to an angel. Just ask.

If you ever want to know if I am jealous just ask. I'll tell you!!!!

Our new home

This would be our new home.

From an Angel to a Daughter and Back

 

Today has been a hard day realizing I AM MOVING. I wondered if Kennedy Knew where to, I dont want her to get lost. But then i read this.

 

 

 

To my dearest family,
Some things I would like to say,
But first of all, to let you know
That I arrived ok.

I’m writing this from Heaven
Where I dwell with God above,
here there’s no more tears or sadness
There is just eternal love.

Please do not be unhappy
Just because I’m out of sight.
Remember that I’m with you
Every morning, noon, and night.

That day that I had to leave you
When my life on earth was through,
God picked me up and hugged me
And He said, I welcome you.

It’s good to have you back again
You were missed while you were gone.
As for your dearest; family
They’ll be here later on.

I need you here so badly
As part of my big plan.
There’s so much that we have to do
To help our mortal man.

Then God gave me a list of things
He wished for me to do.
And foremost on that list of mine
Is to watch and care for you.

And I will be beside you
Every day and week and year.
And when you’re sad,
I’m standing there to wipe away the tears.

And when you lie in bed at night
The days chore put to flight
God and I are closest to you
In the middle of the night.

” When you think of my life on earth
And all those loving years,
Because you’re only human
They’re bound to bring you tears

But do not be afraid to cry
It does relieve the pain.
Remember, there would be no flowers
Unless there was some rain.

I wish that I could tell you
Of all that God has planned,
But if I were to tell you,
You would not understand.

And to my many friends trust,
God knows what it best.
I’m still not very far away from you
I’m just beyond the crest.

And now I am contented that my life,
It was worthwhile.
Knowing as I passed along the way
I made someone smile.

When you’re walking down the street
And you’ve got me on your mind,
I’m walking in your footsteps
Only half a step behind.

And when you feel that gentle breeze
Or the wind upon your face,
That’s me giving you a great big hug
Or just a soft embrace.

And when it’s time for you to go
From that body to be free,
Remember, you’re not going,
You are coming here to me.

And I will always love you
from that land way up above.
I’ll be in touch again soon,

P.S. GOD SENDS HIS LOVE