Jacob's Journey: CHD Awareness Week Feb 7th through 14th

Sunday, February 7, 2010

CHD Awareness Week Feb 7th through 14th

It is the first day of Congenital Heart Defect Awareness Week. I wanted to share some video's about HLHS and what these brave kids go through to survive. They go through more in their first few years of life than we do in a lifetime.

1 in 100 babies have a CHD. That is around 40,000/year. Of those 40,000, 4,000 will not live to see their first birthday. I pray that more awareness leads to more funding for research for these amazing kids. Jacob is 1 in 100 and I am so proud to be his mom and his voice.

Thank you for helping support CHD Awareness and for all of the prayers for Jacob. Please also keep all of the other amazing heart babies in your prayers. Ruthie is awaiting a new heart, Lorenzo is going on his 4th week in the hospital for a leaky valve, Derrick just had his stage 2 surgery and is doing great and Cameron is getting ready for his second stage surgery and also dealing with a clot/absess from a cath procedure. And pray for all of the other families who are fighting this battle.

Warning: These video's may be hard to watch, but these stories need to be told in order to spread awareness. We NEED more research for CHD so that we can help these babies. There is no cure for CHD but there is hope...

Children's Heart Foundation Commercial
http://www.youtube.com/watch?v=5gUVsYBEWw8

A window into our world:
Please help...

One Fight
Story of Derrick Carter's journey with CHD. He is such an amazing little boy who has had his first two surgeries and always has a smile on his face. He gives our family so much hope!
Derrick's Story

A story of beating the odds and what hope, prayer and love can do:
http://apps.facebook.com/joshwilson/

This is the struggle that every HLHS child goes through.

HLHS Awareness Licensed Video

www.youtube.com

The video is for educational purposes only. It is licensed and may not be used for any other purposes other than spreading CHD Awareness.

CHD Awareness Montage
Made by Lauren Celeskey, a 22yr. old CHD Survivor with Tricuspid Atresia aka HRHS.
View Video

Video by Samantha Lee Billings- Awareness for CHD babies
http://www.onetruemedia.com/shared?p=a4a5a2ebc034750cf7626a&skin_id=601

Cora's Story
This is why Pulse Ox testing should be mandatory before newborns are sent home. It is a simple test that could save so many lives. Let Cora's story make a difference. Ask for the test.
Watch Cora's Story

2 comments:

UnknownFebruary 9, 2010 at 11:57 PM
Thank you for sharing this. I'm so glad you found my site so that I could be with you and Jacob from the start. I'm adding a link to your blog from my friends of Cora page so others can learn about Jacob too!
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Kathy BakerFebruary 10, 2010 at 12:33 AM
Thank you for sharing Jacob's story as well. I will ad your video about Cora on this post also. I am so sorry for your loss. Thank you for fighting for pulse ox testing. It should be mandatory and I will do what I can to spread awareness as well!
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When I became a heart mother...

One day my world
came crashing down,
I'll never be the same.
They told me that
my child was sick...
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong.
It seemed my heart
was breaking...
As, I'd loved her for so long.
I will not give up on this child...
despite your best "advice".
I will give my child a chance...
No matter what the price.
And I will learn all that I need...
to help my child to thrive.
I'll even use that feeding tube...
My child will survive!
Will he require therapy?
What if he can't gain weight?
Alright God I can do this...
I will not curse our fate.
The feeding pump beeps,
at 3:00 a.m.
It serves as my reminder...
How many parents would
welcome that sound?
Tomorrow Lord,
I will be kinder.
Another angel earns
their wings...
and I run to my sleeping
child's bed...
I watch her then, for
quite awhile...
Bend down and kiss her head
Then I cry for the parents
whose lives have been broken,
And I look to God
wondering why?
Oh Lord, I just can't
know your ways...
No matter how I try.
And yet, I trust You to
hold her life,
And guide us through
each day
My mind says savor each
moment she's here...
But my heart whispers,
"Please let her stay".
From... pacing the
surgical waiting room...
to sitting by her hospital bed...
From... wishing for a
good night's sleep...
to learning every med...
From wondering will
she be alright?
to watching her reach
out her hands.
With every smile, my
heart just melts..
despite life's harsh demands
For all who see
that faded line...
I look to them and smile...
You see, my child is
loved so much...
I would face any trial.
That same scar I trace
with my finger...
It's the door to her
beautiful heart
I never guessed how
much I'd love her...
Just as YOU loved her
right from the start
A heart mom is
always a heart mom...
Now wise beyond her years
And for those who have
angels in heaven...
Our hearts share in
all of your tears.
Everyday I will strive
to remember...
You chose me for her
and no other
And I will embrace
that beautiful day...
When I became a "heart mother".
~Stephanie Husted

What does it mean to be a mother?

It's that very first moment,
He's placed in your arms,
A wrinkled red face,
Filled with so many charms,
You can't help but cry,
(As a new mother knows)
You've been waiting so long,
Just to count all his toes,
Then visitors come,
Bearing gifts that are blue,
And they laugh, and snap pictures,
Saying, "He looks like you."
And in just a few days,
(Ahh... the joy and the fun)
You'll be on your way home,
With your beautiful son.

What is it like to be a heart mother?
Again, it's that moment,
You hold your child close,
And cry secret tears,
That a heart mother knows.
In just a few days,
Maybe less,maybe more,
You'll be letting him go,
Asking, what lies in store?
And as your child lays,
In a small isolette,
You think to yourself,
I must not get upset,
And as family arrives,
You try hard to stay strong,
But your tired eyes say,
That this all seems so wrong.
You know what is coming,
Though your still not prepared,
He will leave your safe arms,
To have his heart repaired.

What does it mean to be a mother?
It is nights with no sleep,
It is feedings and spit up,
It is watching him roll,
And then finally sit up.
It is knowing this child,
Depends on you most,
It's those everyday milestones,
in which, you can boast.
And yes... there is crying,
(At time's it's quite loud)
But when he says,, "Mama".
He makes you so proud.

A heart mother...
Ahh.. yes little rest,
As the monitors beep,
And you begin to question,
Is there such thing as sleep?
And you can't go home yet,
And your kid's ask each day,
"Will we see you soon mommy?
Can you come home and play?
Real soon... you promise,
Yes...I miss you too",
And then people ask,
How you do what you do.
And you stroke his forehead,
And his fist is unfurled,
And you know for this child,
You would give all the world.

A mother...
Time passes quickly,
Soon he's off to school,
And before you know it,
Hugs just aren't "cool",
He's a teenager now,
With dreams of his own,
And one day it hits you,
My child, has grown.
And though you are proud,
For all he's achieved,
Life passed more quicly,
Than you could have believed.

A heart mother...
You've always strived to live each day,
As if it were the last,
As the mother of a heart child,
You know things can change fast.
You've seen so many familes,
Endure things you can't understand,
And while you trust that God is good,
Sometimes you just don't understand.
But you go on, because you must,
God chose you for him, and no other,
Your stronger that you could imagine,
You have become a heart mother.

Every mother...
And every mother's journey,
Begins on that day when,
She knows with everything she is,
A mother, she has always been.
Crayon marks cover all the walls,
Muddy prints scatter the floor,
Toys and messes everywhere,
And yes... laundry galore.
I must have the best job that there is,
(Despite all the clutter and mess)
My children.. they remind me,
Life shouldn't be such a stress.
Each and every day we have,
(To laugh, to hug, to play)
Is a memory I'll always have,
And nothing, can take that away.
I wouldn't trade a moment,
Or all that they've taught me to see,
I'm blessed to be a mother,
It's more than I'd dreamed it could be.

~Stephanie Husted

Sunday, February 7, 2010

CHD Awareness Week Feb 7th through 14th

2 comments:

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