4-everQuist: Reconizing Miracles

Tuesday, June 15, 2010

Reconizing Miracles

I guess I got a little wordy with that last post, but I did want to add one more tid bit. We are seeing miracles!!! Not in the way we intially hoped for- a healthy heart. But the fact that Severins' heart has compensated for the defects, sometimes creating new defects in order to survive. He is a chubby, otherwise healthy boy. We live here by Primary Childrens. The Docs. there are the best of the best, they have been given a God given talent that we get to be a part of. Technology is measured in leaps and bounds when it comes to healing hearts. Our family is being brought together in a way that I don't think could have been possiable otherwise. Our prayers ARE being heard I assure you of that. We have a strong support group. We can choose to look at the"wrong" but why? when there is so much RIGHT! Our son has the best chance of a long life. Its just about the journey we take. THANK-YOU! & THANKS TO YOU!
All Our Love,
The Quists

3 comments:

Leesa PJune 25, 2010 at 5:37 PM
I just wanted to take a moment and let you all know how much I love you, I am here if you need anything. We of course keep you all in our prayers and are really looking forward to meeting our precious nephew and cousin Severins'
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~Jason and Heidi~June 26, 2010 at 1:15 PM
I am praying for you! Let me know what I can do to help. You are amazing! Sending love and prayers your way.
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Mom & Dad BJune 26, 2010 at 5:01 PM
Hi I'm glad you are here with me. I'll be glad when this is done.
I love ya
Mom
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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 advise.
I will give my son any chance
No matter what the price.
I will learn all 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 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

Every Heart Has A Story... This is Severin's

March 4, 2010 19 week ultrasound. We were told something was not normal about our babys heart

April 12,2010 Perinatology confirmed Tricuspid Artesia, Hypoplastic Right Heart Syndrome, Transposition of The Great Arteries

April 20, 2010 Fetal echo confirmed everything that "could" have been wrong with Severins heart, was. We refer to this day as "the holy crap day" Diagnosis: Tricuspid Artresia, Hypoplastic Right Heart Syndrome, Transposition of Great Arteries, Coarctation of the Aorta, Ventrical Septal Defect, Double Inlet Left Ventrical, his Pulmonary Artery is too big and his Aorta is too small.

July 7, 2010 Birth of Severin!

July 13,2010 First Open Heart Surgery

Modified Norwood, Damas-Kaye Stansel, Coarch. repair,BT Shunt, ASD created

Nov. 22, 2010 Pre Glenn Heart Cath

Added to diagnosis: Pulmonary Stenosis, and Aorta has a "twist"

November 24. 2010 Second Open Heart Surgery

remove BT Shunt, Glenn Procedure, replaced 80% of his Pulmonary Artery

April 16, 2012 Heart Cath
Stent placed in Left Pulmonary Artery, due to narrowing. Increasing LPA diameter 3 times the size, and making it "normal" size

November 15, 2012 Fontan Day!

Sev ROCKED the Fontan! He was discharged 5 days post op. We have never looked back. He is healthy, growing, and so dang smart! He sees cardiology yearly. And the rest of the time he is a NORMAL little boy!