We made it to Philly. Jacob was great today. We stopped 3 times to give him a break. He started out fussy but was asleep most of the trip. It is so nice knowing CHOP is just down the street if we need them.
The Ronald McDonald House was full but we were able to get the Comfort Suite for a few nights. Hoping the RMH has room soon.
Jake has a busy day planned for tomorrow. He has a cardiologist appointment at 8:45am with Dr. Szwast. They will do a echo, chest xray and EKG. He also may need an MRI this week. Thursday we have a pulmonologist appointment.
I am also hoping to get with the nutritionist while we are here about his belly issues.
For right now we are relaxing in our room. Thank you for all of the prayers and support. I will update tomorrow after his appointment.
Love,
The Bakers
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HLHS Information
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2010
(142)
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July
(19)
- What A Relief!
- Pink For Mia
- Adventures in Philadelphia
- We are here!
- Safe and Sound in Morgantown
- Tummy Troubles
- The Countdown has begun
- My Trip To Holland
- Story of Hope and Inspiration
- Jacob Laughing
- Join Team Jacob!
- Excited for CHD Awareness!
- Don't Wait For Tomorrow
- My Birthday Wish
- Fear, Faith and Progress!
- Ruthie Got Her Heart!
- New Look
- The Bond of Brothers
- Boston Med
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▼
July
(19)
Jacob's Visitors
Followers
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
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
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
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