Tyson Hugh Hooper

Tyson Hugh Hooper
Our son, Tyson Hugh Hooper, was born with coarctation of the aorta, hypoplastic arch, and a transitional avsd. His first open heart surgery reconstructed his aorta and was on day 9 of life. His second open heart repair was not anticipated to be needed until two or three years of age. Ty had other plans. We spent the vast majority of his first 3 months of life at Vanderbilt as he went into heart failure and was diagnosed with pulmonary hypertension. As a result, the medical team concluded that he needed the repair much sooner than usually recommended, and at just shy of 3 months old Ty underwent his second life saving open heart surgery. God has already worked so many miracles in Ty's life and the life of our family and we know he is using our story. Because of this, we are grateful for Ty's special heart and feel beyond blessed that God chose us to travel this road. We ask for prayers as Ty continues to heal. We are praying for a full recovery and life without restrictions for Ty. We are praying for God to use our family and Ty for His glory.

Thank you to each and every person who supports us through prayer, giving, or just by loving on our family! We are humbled and blessed by all of the ways the Lord is providing for us and know that he is using Ty and his story to do great things!

Tuesday, May 19, 2015

Mystery solved????

They doctors may have solved Ty's mysterious symptoms.  Bless his heart (literally and figuratively).  His BNP level was at 3,000 (normal is under 100).  BNP is an indicator of degree of heart failure.  The problem is, with a BNP that high, he should be one foot in the grave, not grinning and pink as a piglet like he is.  So yesterday we really dug in and started looking harder.  Now they think Ty may have Pulmonary Hypertension.  I know the worst possible reaction to this news is google, but I went there anyway.  The more I look the more desperate the situation appears - like talk of life expectancy and heart/lung transplantation.  I know that is the worst case scenario, but Ty seems to find (and embrace) even the smallest odds.  Only 1% of babies are born in heart disease - way to go baby boy, making sure you are unique for sure.  Our geneticist only found about 56 documented cases of babies with Ty's genetic mutation and make up... I can't even put a percent on the chances of having that it's so small.  Ty nailed it.  So forgive me if, for just a moment, I hang my head in dread when I see the tiny percent chances of #1 an infant even having pulmonary hypertension and #2 the fact that there is no known cure.  I'm speechless and telling myself that God is in control and I need to wait and talk tot he doctors after rounds before I freak out.  If you could, please say an extra prayer or 2 (or 2,000) for us today.  This Mama needs answers and a plan.  

God, please help me be patient and trust you and praise you in midst of the unknown.

And with that, I leave you with another song.  My song for today:

Click here to listen to it or read the lyrics below.  So fitting.

"Praise You In This Storm"
I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away


I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

[Chorus x2]


Shirley said...

Still praying... God never gives us trials without giving us the strength to handle them. Stay strong for your boy, and I hope all the prayers will come together for good.