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!

Monday, May 11, 2015

The worst feeling in the world...

In the past 48 days I have had a recurring thought.

"This is the worst feeling in the world."

The thought is in response to a different circumstance every time, but it pops up in my thoughts still the same.  But if something is the truly the worst, it can only be once, right?  THE worst.  Implying worse than all the others.  What happens when what you thought was the worst, gets worse?

On March 24, 2015 after Ty had been delivered and taken to the NICU in the late night hours (or early morning hours), I laid in my hospital bed and thought, "This is what it feels like.  This is the worst feeling the world... having your baby and not having your baby in your arms."  The same thought occurred to me many many times over the next 3 days as I was wheeled the long long walk from the adult hospital over to the children's hospital to visit my newborn son in the NICU and then was wheeled back to my room, far removed from him.  "Having your baby and not having your baby is the worst feeling in the world."

I revised my thought on Friday, March 27.  The nurse came in my room and told me I was being discharged.  When someone is discharged from the hospital, it should be a joyous occasion.  I however, was struck with a feeling of panic.  I had to leave.  Ty had to stay.  "This is the worst feeling in the world - leaving my baby behind."   

I kept thinking, now I know.  Now I know what the worst feeling in the world really is.

As the days in the hospital stretched for twenty-four straight, my thought evolved again.  "The worst feeling in the world is having to choose which of your children you will be with."  I struggled with where to be.  Every moment spent at home with Ava Grace with overshadowed by guilt that I wasn't at Ty's bedside.  Every moment spent at Ty's bedside was filled with a sadness that Ava Grace needed her mommy and I wasn't there with her.  "This is most certainly the worst feeling in the world, being forced to choose between your children."

Upon our first discharge I was excited and anxious, but not scared.  I felt prepared, as much as anyone is when they bring home a new baby.  After less than 24 hours, I thought, "I'm afraid of my own son."  This must be the worst feeling in the world.  Every hiccup, sneeze, cough, and nap caused me anxiety.  Was he sleeping too much, crying too hard... he coughed, did he aspirate?  And in about 24 hours time we were back in the ER.  He was okay, I'm not so sure I was.

Two hospitalizations and 3 trips to the ER later, we were slowly getting a routine.  My "worst feeling" thought was finally fading.  Then it happened.

It was a blur, but I was driving my baby, turning blue, in distress.  I was deciding whether or not to drive on or call 911.  I was praying, comforting Ty, driving, and reviewing the steps of infant CPR in my head all at the same time.  In my head I was screaming at the top of my lungs, "this is the worst feeling in the world - I take back all the other times I thought it - this really is the worst."  Every parent fears for their child, maybe even their child's life, but most often it is unfounded or over-reactive.  Really and truly fearing for your child's life and knowing the a negative outcome is a real possibility, THAT is the worst feeling in the world.  Feeling that your child's life is literally in your hands and his survival based on your decisions - that's a bad feeling.  Did I make the right call to take him to the ER myself, or should I have called 911.  He's turning blue, do I keep driving, I'm so close.  What is going to happen.  "Jesus help us" - I said this over and over and over.  Knowing your child's life is in danger is the worst feeling in the world.

As they loaded my sweet boy into Vanderbilt Children's Angel Transport and I continued to pray, we headed down town.  I prayed and prayed and reminded myself that Tyson belonged to God.  God chose Chris and I to parent him here on earth, but ultimately he was God's child.  As I followed that speeding ambulance, my thought came back.  "This is the...." and then my thought changed.  What about the best feeling in the world?  I took a deep breath and felt a new thought settle in.  "God's plan is perfect, God's plan is better than mine."  This is the best feeling in the world.  Knowing that we are held in His hands and that His plans are greater than our own.  My negative thought has been replaced.  "Jesus' love is the best feeling in the world."  He'll get us through all of the worsts.  When the worst turns even more worse, He'll still be there.  He still has a plan.  He is good all the time.  He is the best and the only and all we need.  Safe in Him is the best feeling in the world.