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!

Sunday, July 12, 2015

2 weeks... it really happened

 We have officially been home for two weeks.  14 whole days.  There was a time that 14 days straight at home was a dream and now it is a reality and we are still going strong.

Our days are full and so are our hearts!  We have had quite a few doctor visits, but in between those we are enjoying being home so very much.  Ty is doing awesome!  His sats are stable and although he still breaths too fast off and on, it is no longer the constant struggle.  Every now and then we catch him with a respiratory rate of 80-90, but for the majority of the time he stays in the 60, which is really good for him.  He still retracts some when he breaths, but they expect the high rr and retractions to get better as he grows.  He also isn't doing well feeding by mouth.  He can, but doesn't seem to want to  - please join me in praying that he will simply decide to start taking his bottle!  In the mean time, we are still on the feeding pump.

We have had to adapt as having Ty around changes quite a few things.  He isn't quite ready to be out and about and is still recovering.  We also want to avoid having him outside in this extreme heat and humidity, so we have tweaked our summer activities from the norm.  We are staying home and spending less time at the pool, but we are still having fun!

I am slowly helping the house "recover" from three months of neglect as I dig out from piles of laundry and empty bag after bag of stuff we had packed to take to or brought home from the hospital on our many trips back and forth.  The girls have been enjoying lots of craft projects, which they both love!

Yesterday we created a little indoor herb garden.  Ava Grace checks about every two hours to see if there are leaves yet, bless her little hopeful heart.  Today we are going to make peanut butter bird feeders so she can see a more rapid result to one of her projects!

Ty has been cleared for Tummy time, but still has lifting precautions (he has to be scooped up from bum and head instead of under the arms).  He has been working on some catching up too!  He's a little behind, but we are making progress.  His head control has improved enough to remove the newborn head support from his car seat and swing, but he still doesn't lift his head when placed on his Tummy.  Instead, he acts like we are absolutely crazy and lays there, face down, waiting and fussing.  He'll get there.  We have also been working with him on grasping and swatting and he's coming right along!

Lily is our aspiring chef.  There isn't much on TV these days that  a family can watch together, but we have discovered that we all enjoy several shows on The Food Network and they are (mostly) appropriate in content and language.  Lily's favorites are Chopped, Next Food Network Star, and Master Chef.  She genuinely loves them and has taking a big interest in cooking.  I have always encouraged the girls in the kitchen and they almost always "help" me when I cook, but I have realized Lily needs to take on more of a leading role in the kitchen.  Sometimes kids are capable of so much more than we expect if we just loosen up and let go of the control!  This is particularly hard for me in the kitchen, but yesterday we gave it a go.  I sat at the bar and simply instructed as the girls made a HUGE batch of from scratch Tennessee Spice Muffins together!  (Did you know you can freeze muffin batter in muffin cups and bake them straight from the freezer later?)  We stocked the freezer with muffins yesterday that will be oh so yummy this fall on cool school mornings!  

 The girls have enjoyed "coaching" Ty.  Here they were coaching him through Tummy time and showing him what to do!  It is so fun to watch all three of my littles enjoy each other!

 This week we plan to enjoy more time at home adjusting to our family of 5.  Ty has cardiac clinic on Tuesday and he will get an EKG and an Echo, so I am excited to see those results.  Ava Grace has a dentist appointment for a second opinion on a dental issue, so I am hopeful for good results there as well!

Outside of our doctors appointments we plan to do a lot more of this!  Cuddling, snuggling, crafting, cooking, and maybe some indoor swimming too!

And last, but not least... I have some news.  I saved the BEST news for last, of course!!
This beautiful girl, my precious step-daughter, is now also my sister in Christ!  Lily got saved last week at revival at her Mom's church.  I can't even put into words the joy in my heart.  Thank you Lord for your grace, your love, your sacrifice, your forgiveness and your gift of eternal life in heaven.

Happy Sunday y'all!  I hope you each have a blessed week.


Sarah said...

What a fantastic update! Sounds like everyone is really enjoying finally being home together. And Lily's news is the best news of all!

Shirley said...

Great update! Some semblance of normality, so much needed. Love the photo of Ty holding hands with Ava Grace.