Behind Your Scar

By looking at Maddie, you wouldn't know she lives with a complex heart defect. She's a pretty typical almost 2 year old...besides the shade of blue she turns from time to time. The only thing that is notably different from her peers is the scar she wears.

I remember the day before her first surgery, I was able to spend about 2 hours holding her. During this time, as I was memorizing every part of her, it hit me that she would carry a physical scar for the rest of her life. That my sweet, innocent, tiny baby girl was going to be cut open with bone shears while doctors "re-plumbed" her broken heart. It felt as brutal as it sounds and was a crushing moment for me. Not only would she have to bear the physical pain of the surgery, she would have a physical reminder of it forever. And not only would she have to do this once, but she was on the track for 3 open heart surgeries, at least, for her life and she wasn't even a week old yet.

In Maddie's case, wearing a scar is normal for her. She'll probably wonder at some point why doesn't everyone have a zipper like her? Her brothers have contemplated this and wondered why they didn't have their heart fixed like their sisters. But maybe the scar is intended to be much more than a physical reminder?

I guess my wish for her is that she'll be proud of her scars. I hope she'll someday realize how special she truly is and what she's taught us. I pray that she'll understand how much she's gone through and focus on the strength she's had to have to endure life with a half-heart. With this, I hope she'll live each day to it's fullest and never lose sight of the love we have for her as well as the love that our Savior holds for her. I hope that she wears it with honor because it signifies so much.

Behind Your Scar...
Sometimes I have those "moments",
When I think...life's just not fair,
Then I think of all you've been through,
And I see the scar you bear.
A faded line right down your chest,
Made with such careful precision,
We wanted you to have a chance,
Could there be any other decision?
And so I trace that "perfect" scar,
Made with the utmost care,
And I realize there is purpose,
Behind this scar you wear.
What have you taught us?
You've taught us how to face a storm,
(Some things are just out of our hands)
Life has no handy guidebook,
(Things don't always go as you've planned)
People come into our lives,
(Sometimes it is just for a season)
But God brings them into our lives,
(And I know that He must have a reason)
Normal, uneventful days,
(The kind that we always hoped for)
These are the days I say, "Wow God",
We just never know what lies in store.
If I can place a feeding tube,
Without even getting distraught,
Perhaps, maybe, I might be...
Much stronger than I thought.
It's okay to be afraid,
And it's alright to cry,
It's okay to feel lost sometimes,
It's even okay to ask...why?
You face life with courage,
(Knowing God set you apart)
Every little thing you do,
You do with all of your heart.
No crystal ball exists for us,
(To see us through each strife)
We only have one wish for you...
An ordinary life.
You've taught us to love one another,
(Helping each other to cope)
You've taught us compassion for others,
You've taught us to never lose hope.
You already have quite a story,
Which you can someday share,
And I can see it's beauty,
Behind that scar you wear.
~written by Stephanie Husted, heart mom to Braeden (HLHS)

Happy Hearts Day!

Happy Valentine's Day!!! Bryan and I celebrated our Valentines day with a couple's massage and lunch at Cave B! The kids enjoyed their afternoon at Grandma and Papa Allred's house too. It was fun, relaxing, and gave us lots of time to reflect on this past year. Heart awareness day is not complete without mentioning the doctor's and nurses who have saved our daughter's life...I hold them on a high pedestal, trust & love them, and give them thanks from the bottom of my heart. Their job has to be so difficult and they always seem at ease and upbeat by lightening the situation when it needs to be and giving unending support when we, as parents, need to express our worries, concerns and ask our "millions" of questions. Our love and thanks to Seattle Children's: Dr. Vernon, Dr. McMullan, Dr. Chun, Dr. Jones, Dr. Baden, Elizabeth Hadland, Nurses: Ann, Maggie, JoAnna N., Rayma, Micheal, Miranda, Jayna, Carlotta, Diane, Meghan, and so many more!

To wrap it up, here's a CHD awareness video made by a 21 year old CHD survivor. Lauren has Tricuspid Atresia and is a Hypoplastic Right Heart like Maddie. She's had all 3 surgeries and is currently in college. What an inspiration for us to find adults with hearts only "custom made" by God!

This week has been extra exciting & exhausting for some of our heart friends too...Daniel (I've spoke of him before, Maddie's first NICU roommate) finally got his heart after waiting for so long, and baby Karlee got a heart transplant the following day! Seattle Children's has been a very busy place with 5 transplants already this year and these two were a day apart. Last year, they performed 15...which is simply amazing. We're so happy for their families and ask that you include them in your prayers, as well as the families who are grieving or still waiting for their miracle (Lindsay, Owen and Gracie G.). Unfortunately, a life is lost to save another...

Make an on-line slideshow at www.OneTrueMedia.com

Our Christmas gift this year...

Maddie, our miracle, at 9 months

Twas the night that you joined us...all eyes were on earth.

Awaiting with joy for a most special birth.
The angel's stood ready...for each need and care,
But all of them knew... that the Lord would be there,
And I labored on... and daddy was scared,
We waited...and wondered... and hoped we'd prepared.
We knew you were special...but so very sick,
Yet hope had grown in me... with every kick.
And soon it was time...into this world you came,
I heard a soft cry... then I called out your name....
And God held your hands...while the angels stood by,
Since I could not hold you...they hushed your soft cries.
One small angel looked to the father and smiled,
"Can you truly teach hope... through such a small child?
An infant so helpless...a baby so new...
Oh please tell me Lord...is this what you will do?"
God looked from the angel...to the baby's sweet face,
"Through her my young charge... they will learn about grace.
I penned this child's journey...quite a long time ago,
And through her great courage...such true love will grow.
Every hair on her head has been numbered you see...
It's my hope that through her... they will learn to see me.
Oh my little one with a special heart...
Great love will see you through...
See look that is your family...They've been waiting for you...
I send you to their waiting arms...for a time we'll be apart...
But I'll always be with you...for I live within your heart."
And so we held you in our arms...And thanked our Lord above...
In you...we see the miracle, of His undying love.
So when it's Christmas morning, And I watch my children play,
I'll need no great reminders, For I see my gifts each day.

Written by Stephanie Husted (Mommy to Braeden, HLHS)

Heart Mom's

Since being home, I've done tons of research on the Internet, mainly trying to find another family with a child who has Maddie's heart defect, or a similar one. I've definitely found the need to talk to another mom who's been there. There is a support group that meets once a month at Children's Hospital, but I don't know how often we'll make the 3 hour drive over for it. So, I've resorted to looking on the Internet for support and to just find a mom to chat with. I've made a couple of contacts so far and these mom's are so willing to share their story and to talk. Without even knowing them, we share a common bond. A heart baby. And while searching, I found THE CHD BLOG and would like to share this poem I came across there. It's a tear jerker...so get ready. Boy, does it speak to my heart though and all of the thoughts and feelings I've had since finding out we had a heart baby on January 2nd. Speaking of my heart baby, she's had another good day BUT her nights and days are mixed up...so I'm typing 1 handed, holding my little, delirious night owl! We both need some sleep!

"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 child 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 her for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will she need a lot of therapy?
Will she gain the needed weight?
Please God, help me do this.
I will 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 child's bed.
I watch her sleep for quite a while.
I bend down and kiss her 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 her life, and guide us through each day.
My mind says savor each moment she's here,
but my heart begs, "PLEASE let her stay"!

From pacing the surgical waiting room, to sitting by her bed.
From wishing for a good nights 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 scar I trace with my finger (It's the door to her beautiful heart).
God must have known how much I'd love her (Just as He loved her 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 her (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown

Madison Grace Allred

We have officially decided our baby girl's name: Madison Grace Allred. It has been our girl name since we were pregnant with Jace and there is no other name we're fond of. She already seems like a "Maddie" to me and we wanted to have a middle name that had reverence. When we were in Seattle for our last appointment, we toured the NICU and there was a room all decorated on the outside with a sign that read "MADITUDE" and we found out later, the little girl's name was Madeline and her parents called her Maddie. She has been through so much and is quite the fighter- something we hope for in our baby. So, it just fits since we were already planning on Maddie if she were a girl. My mom wrote a poem for her and I'd like to share it. As most of you probably know, my mom and I share a very special relationship and this is her first granddaughter...

For my "Maddie" by: Nany Stewart

I know a little miracle, whose growing strong inside
Her mother's womb protects her from the world outside

Her tiny heart is broken and when the time is right
Modern medicine will fix it, and all will be alright

I know this precious angel, I love her with all my heart
You see, she belongs to my angel with such a loving heart

So as you go about your day's routine
Please pray for both my angel's and keep them in your dreams.