Sunday, September 28, 2008

Sunday Celebration

We had a great day today. We took Macie to church and had a light breakfast with everyone afterwards. We shared a slide show of "Macie" with the congregation, I will try to figure out how to post it. We are so blessed to have our miracle Macie. Next Sunday Macie will be two years out from receiving her Gift of Life. Michael and I are so grateful to Macie's donor family. As this is a time of celebration for us, they are morning the loss of their beautiful Destiny. Please keep Destiny's family in your prayers.

We are having a blanket drive for St. Louis Children's Hospital PCICU. We will take the blankets to the hospital during Macie's October appointment (end of Oct.). We already have several, any size and theme, new or handmade. These blankets will be passed out to cardiac (heart) children ages birth to 18 years of age. Please let us know if you would like to contribute.

Please keep baby Blake and baby Gracie in your prayers.
www.caringbridge.org/visit/blakedurdel
www.caringbridge.org/visit/graciejeanlockyer

God didn't promise days without pain, Laughter without sorrow, Sun without rain, But he did promise strength for the day, Comfort for the tears, And a light for the way. ~Author Unknown

Monday, September 22, 2008

Prayer Request

A co-worker of mine has a little boy, Blake who was airlifted to St. John's in Springfield last week. Blake was moved out of PICU yesterday and is still awaiting testing. You can visit his site at www.caringbridge.org/visit/blakedurdel
Please keep Blake and his family in your prayers.

Saturday, September 13, 2008

The Day I Became A Heart Mother

The Day I Became A Heart Mother
One day my world came crashing down,
I'll never be the same.
They told me that my baby was sick.
I thought, "Am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.
I will not give up on this child.
I will listen to your advice.
I will give my son any chance.
No matter what the price.
I will learn all that I need
To help my baby thrive.
I'll even use that feeding tube.
My child must survive!
Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
As I accept our fate.
When the monitors beep at night,
it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my baby's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to
You wondering why?
Oh Lord,
I just can't know your ways....
no matter how I try.
And yet,
I trust you hold his life,
and guide us through each day.
My mind says savor each moment he's here,
but my heart begs,
"PLEASE let him stay"!
From pacing the surgical waiting room,
to sitting by his bed.
From wishing for a good nights sleep,
to learning every med.
From wondering,
"Will he be alright?",
to watching him reach out his 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 scar I trace with my finger
(It's the door to his beautiful heart).
God must have known how much I'd love him
(Just as He loved him from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a
"Heart Mother".

~Stephanie Husted
Mommy to Braeden HLHS post Fontan
Carepage name: babyhusted

Thursday, September 11, 2008

Prayer Request

Please take a few moments and read about little Gracie Jean. I became addicted to their blog while doing some research this summer. The family whitnessed an amazing miracle yesterday. Gracie Jean is still very sick and needs many prayers. Please check out their blog @ www.caringbridge.org/visit/graciejeanlockyer

Monday, September 8, 2008

BIG NEWS For Heart Transplant Patients!

Last week the FDA approved the AlloMap! The AlloMap is a non-invasive test that uses molecular expression techniques to assist doctors in managing heart transplant patients post-surgery for potential organ rejection. In our words this test could mean that Macie would only need a lab draw to check for rejection in place of the now every other year biopsy! We will be speaking to Macie's cardiologist Dr Canter in October to see his take on this. Macie's next scheduled biopsy isn't until October of 2009, so we pray by then the AlloMap is a safe option for Macie and her transplant friends.

More news............... We are now cheering on the Chicago Bears this football season. We are still cheering on the Colts! Chicago Bears cornerback Charles Tillman's daughter is also a heart transplant recipient. Like Macie she was born with cardiomyopathy. Tillman's daughters name is Tania - the same as Macie's donor mom. Baby Tania was released home last week our prayers are with her and her family.

Macie started Playgroups last week, she LOVES it and rules the room! I'll post pictures soon.