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, September 1, 2015

Playing Catch Up...

Ty is playing a major game of catch up and he's winning!
This little guy turned 5 months old on the 24th and is growing in so many ways.  He's added squeaking and squealing to his vocabulary.  He has added a tooth to his mouth.  He has even added two new talents - rolling from front to back and back to front - which he learned in about a weeks time! Way to use that big noggin' son!

 We are still sporting the feeding tube, but we are making progress!  Ty has discovered "the tube" and it's location so it has become a favorite toy.  I often catch him pulling it, holding it, chewing on the end of it, or removing it all together.  In fact, this morning when we got home from taking Ava Grace to Wee school, I discovered that after I started his feed, Ty had removed his tube and was feeding his car seat all the way home.  Fun times!  We have, however, made great strides.  Ty will take an average 40-45ml when offered the bottle (when he is willing to take it at all).  This is up from the 5-15 we had been stuck on for so long.  We have also started some baby food at the recommendation of the feeding therapist.  Ty doesn't complain, he just lets me stick it in his mouth and promptly spits it out.  It doesn't matter how far I get it back in there - the kid is a professional spitter outer!  But we keep practicing... we'll get there eventually.  We are just praying we get there before they make him have a g-tube (directly into the stomach instead of through the nose) put in.  Worse things could happen, but we'd like to avoid another surgery and skip that step if possible. 

The coolest thing we have seen in recent days is the healing process on the inside showing proof on the outside.  Ty's oxygen saturation varies throughout the day ranging from 100% to 90%.  From the time he came home for good until about 2 or 3 weeks ago, his sats would drop every evening when he fell asleep.  From about 6:00-10:00 (and I'm assuming any time he deep sleeps, although we don't put the monitor on him during the day to know for sure), his monitor would go off every 15 or 20 minutes as his sats would drop to 88, or 87 and then return to 90 or 91 where it would sit most of the night.  Well, about 3 weeks ago, his monitor started going off less and less.  In fact, this week it hasn't been going off at all!  His sats now stay above 96 almost always - usually floating around 98-99!  It is such a great feeling and we are praising God because we know this is proof that Ty is growing into his new pluming and God is healing him from the inside out!

In other news...
A fellow heart Momma and her hubby have started a non-profit organization called Project Heart!  They are doing exactly what Chris and I have pledged to each other to do as well - spreading awareness and raising funds to further research and support families effected by congenital heart disease.  Did you know that more children die from CHD each year than all forms of childhood cancer combined?  CHD awareness and ministering to CHD families is a big cause and needs support in all forms!  Please take a moment to check out the Project Heart website and find them on facebook to "like" their page!  Click here to be directed to their website.  They have some really cute shirts for sale too!