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, June 23, 2015

Thrive


One of the determining factors on when to have heart surgery is "the ability to thrive."  A baby who is growing and gaining weight at home is considered a baby who is thriving.  A baby that is not doing those things needs surgery or intervention on some level.  Well, we haven't made it home quite yet, but this is what thriving looks like to me!  Look at that grin!  Look at that handsome pink-skinned little boy!  I look at his monitor and see nothing but good solid numbers - 100% oxygen saturation, a healthy 131 heart rate, and breathing 42 times a minute at the moment - half of what he was doing in heart failure!


 Here he is with ALL of his lines out - pacing wires gone, RA line gone, chest tube gone... the only thing left is his pic line which stays in place until discharge to give us easy access (if we need it) to give medicine or blood or to take blood for labs.  He is off all of his drips and on oral medication only!  He isn't on any cardiac meds at all - just meds for reflux, constipation, and blood pressure... that's pretty good in my book!  We hope to see all of those become unnecessary over the next few weeks or months as he adjusts to life with a healthier heart!


Here Ty is with one of our heroes!  This is Dr. Mettler, the surgeon that did both of Ty's repairs.  I'm kind of at a loss for words when it comes to him... he is kind, caring, confident, and so good at what he does!  He is the kind of surgeon you would hope to have.  I hope we never need his services again, but I know that Ty is always in good hands in Dr. Mettler's OR.  The Lord is doing great work through this man's hands and mind and we are overcome with gratitude.  How do you adequately express appreciation for the man that saved your child's life... twice?  There are no words, but our hearts are full for him and his family.  We have prayed for him since the moment we found out that our cardiologist chose him to operate on Ty and we will continue to pray for him and the work he does for the rest of our lives.


It'll be a few days yet, but we got our going home shirts ready!  My friend graciously gifted these to us, but they actually have a business, so if you need cute shirts, you can find them on Facebook: 

(I also had her save this design - I'm getting shirts for the girls that say "brother" instead of son and for the grandparents - if anyone else wants one, let me know!!)

Today Ty graduates from ICU.  We have a bed upstairs waiting for us as soon as they finish rounds down here.  Ty also gets to try a whole bottle by mouth to see how far he gets.  He may have to work up to it as he gets stronger and his stamina increases, but we are going to let him try to see how he does.  

I have leaned heavily on the Lord and tried not to worry over the past weeks and really months.  No matter how much I gave my stress to the Lord, there was always an inkling of worry and "what if" that would play around the edges of my mind.  I would pray and push them away, but they would come back... it was a constant battle and vicious cycle.  Last night as I drove home I noticed that I was smiling.  It was a smile that wouldn't fade and I noticed that my soul was quiet and calm.  It is well with my soul.  The fear and anxiety on the fringes of my being have faded, at least for now.  The journey with congenital heart disease is a life long one.  Ty's battle is not over, it will never be over until he walks with Jesus, but we have come leaps and bounds and are in a much safer place now.  His heart is mended and it feels good.  Praise God from whom all blessings flow.  He chose to let Ty stay with us and I believe He has big plans for our little guy with a very special heart.


1 comments:

Shirley said...

God rewards those who trust in Him, especially when the trials seem to be more than you can bear. I thank God for hearing and answering our prayers, and pray for continued strength and healing for your precious boy. Also praying for your mom.