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 1, 2012

Her Eyes are A-OK!

Ava Grace decided to baptize us (her parents) by fire when it came to medical bills and worry!  :-)  As I have shared (I think), we found out the day after she was born that the "bruise" on her face wasn't a bruise after all, but a birthmark called a port wine stain.  This type of birth mark has no know cause or prevention.  It's not a pigmentation thing, but actually dilated capillaries.  This means, it won't fade over time or go away on its own.  We don't even see her birthmark anymore, it's just part of her sweet face.  However, when we found out what it was on day two of her little life, we also found out some disturbing information.  Port wine stains on the face are associated with a couple very serious syndromes with symptoms ranging from abnormal growth to seizures, paralysis, and learning disabilities!  Scary stuff.  In addition, when around the eye, it can cause pressure and damage to the optic nerve... glaucoma!  Needless to say, we were concerned and immediately faced with a future of doctors appointments, specialists, and procedures.  We have been so lucky and blessed.  We absolutely LOVE our pediatrician and he has made all of our appointments for us!  Not only did he make them for us, he sought out and sent us to the best!  So, We have been to Vanderbilt twice so far - two different buildings, two different specialists!  The first was at Pediatric Dermatology and he cleared us of worry of syndromes.  There is less than a 1% chance that she has anything and he said not to worry one bit!  The second was most recently, and it was at Vanderbilt with a pediatric opthamologist! 

Again... good news!  Her eyes are perfect!  I wondered how they would do an eye exam on such a tiny person!  Boy, do they know what they are doing!!  I held her in the exam chair (pictures are on my phone and I am too tired to get the off to upload them right now) while they did the exam.  They held different lenses to her eyes, tested the pressure, and then dilated them and looked at her optic nerve!  Both eyes were great... a little far sighted, but apparently almost all babies are when they are this little. 

We will have to go back to the dermatologist at one year, just to check to see if anything has changed.  We will go back to her opthamologist every 3 months to continue to monitor her eyes.  All this just to be sure and to monitor before, during, and after her procedures.

Her next appointment is in early June!  It's the big mama-jama!  We'll be seeing Dr. Chester - her plastic surgeon!!  From there we will schedule, what our dermatologist has predicted to be 7 to 10 laser surgeries to be done on her face.  Each surgery will take off a layer of the port wine stain and we'll treat until her skin tone matches her other cheek!  :-)  I'm nervous, of course, but thankful for good doctors!  I am also thankful that our little angel won't have to struggle with the social difficulties that could come with her birthmark when she's older.

With each passing doctor appointment we breathe a sigh of relief.  We are also thankful for Grandmommy who goes to our visits with us!  An extra set of ears and a note taker is a must at these very important visits!  (This picture was taken after the eye appointment and her little eyes were still adjusting, lol).  Please say prayers for our sweet Ava Grace and her continued jorney, and also for us as we face potential medical bills - hoping insurance comes through in a big way!  :-)


Jennifer Burtram said...

Your God is so big! This whole situation is just part of His plan to make you and Chris the most experienced super parents ever! Yay for good news from doctors!!

Jennifer Burtram said...
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Allyson said...

Woohoo!!! I can't imagine how scary all these doctor's visits are, but what a great opportunity to trust in the Lord! I'm sure that's why he had this in His plans all along! :)