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!

Friday, July 3, 2015

5 days

Five days ago I loaded Ty up in the car seat and walked out the doors of Monroe Carell Jr. Children's Hospital at Vanderbilt and drove home.  Five days.  It seems like a huge accomplishment given the past three months with our little guy.  He never really follows the plan.

We had planned to discharge a week ago, on a Friday morning, but he threw us a curve ball with his blood pressure.  So we tweaked his meds and planned to head home Friday evening instead.  He had other plans.  So we aimed for Saturday morning.  Still not ready, but maybe at 4:00 Saturday evening - nope.  Then we shot for Sunday at actually made it.

It has been a WONDERFUL five days home.  The girls have enjoyed having him home and so have Chris and I.  I think the most enjoyable part for all of us has been being able to be TOGETHER for a change!

We have taken it easy and each day has held some hesitancy on the part of Chris and I.  We know that Ty is better - he looks like a new baby, but every time we attach him to his pulse-ox monitor at night I think we hold our breath a little waiting for the number to come on!  Ty has, for five days, held steady above 95 % oxygen and a healthy heart rate in the 130s for the first time in his life (at home).

We have ventured out a few times.  Once for a visit to the pediatrician.  Ty has, understandably, been slow to grow, but he is still on the charts!  His percentiles are as follows - 10% in weight, 14% in height, and 26% in head circumference.  On Thursday we had 3 appointments scheduled - caridac clinic at Vandy for Ty, a blood draw at Centennial for Ava Grace to be allergy tested, and then feeding therapy in Hendersonville for Ty.  Being himself and never sticking to the plan, Ty ended up having to be xrayed and his cardiac clinic appointment turned into a 4 hour event that caused us to cancel the other two appointments!  Thankfully, his lungs looked good even though he was retracting a little.  We don't go back to clinic for almost 2 weeks - they thought he looked great!

Today we ventured out to the civic center to take the girls swimming at the indoor pool for an hour while Chris worked out!  Ty slept for a few minutes, then got out and laid on a beach towel and talked with me while the girls got in some summer fun - finally!

Overall it has been the most fun week of the summer by default.  It's the ONLY week of the summer we have been home to spend time together and not been COMPLETELY stressed out.  

The girls have had fun being together and at home!  They have played and baked and laughed their way through the week

Ty looks so good and is doing things that sweet babies his age should do.  Today he discovered his hands and spent some time gazing at them.  He has some catching up to do - he is no where close to holding his head up yet and he can't even do tummy time for 4-6 more weeks, but we'll get there.  In the mean time he is "talking" non-stop, grinning like a fool, and we have even caught him laughing in his sleep two times!

I tell myself every day I will never ever take this for granted.  When I first wake, when I lay down at night, and countless times in between I find myself in prayer repeating, "thank you Lord... thank you Lord... thank you Lord."  This has changed us for the better and I am forever grateful to our Father in heaven for choosing us for this precious miracle and for allowing him to stay here with us.  We pray that Ty continues recovery safely here at home and that his health continues to improve and that he thrives.  We pray that we all thrive as a family and that God is glorified through our story.