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, April 14, 2015

Day 21... 3 weeks old!

 Hello from the 7th floor!
I haven't had a chance to update since we moved out of the ICU!  Praise the Lord for the progress we have seen and for the plans he has for our precious boy!

Sunday was Ty's last day in the PCICU.  He was released to move to the floor Friday night, but we had to wait for a bed to become available.  So, Sunday we visited and took Ava Grace.  She got to "hold" Ty for the first time.  I can't even describe to you how excited she was.  She is going to be one LOVING and PROTECTIVE big sis!

Of course, I had to get in some snuggles too.  Ty is off of all his tubes except for the feeding tub, so it is getting easier and easier to get him out of his bed to hold.  In fact, I was told he was the most popular boy on the 5th floor.  The last couple of days down there he spent lots of time hanging out with the nurses in the nurses station.  They went on and on about how cute he was and spoiled him rotten!  We would show up in his room and he would be missing from the bed!  I even called his nurse once to check on him and a different nurse answered and told me she wasn't his nurse, but was just in there playing with him and he was doing great!  (We have absolutely LOVED the staff here - they are awesome!)

Sunday night late they moved him up to 7 where we can room in!  His room is a "regular" hospital room... complete with TV, pull out bed, and mini fridge!  You know this Mama has been getting in as much snuggle time as possible (taking breaks to go home and snuggle Ava Grace too - dividing time is tough to do)!  Today they put him on a battery powered monitor, so we can be "unplugged" and go out and about the halls if we want to.  For now, I'm keeping him all to myself in his room.  Yesterday he took 10ml of breast milk through a bottle as a "test" and did great!  So, today we are having a barium swallow study that they will look at it on xray so we can make sure everything he swallows is going to his belly and not his lungs.  If he passes that, we can start bottle feeds and hopefully kick that feeding tube.  There is a really good chance he'll need both for a while until he can build up the stamina to eat all of his food through a bottle.  When you have been through so much in your short life, eating from a bottle is a major work out.

 It is hard to believe he is three weeks old today!  He has done so much in these three weeks that have both crawled by and flown by all at the same time!  Chris and I have also learned so much!  I told Chris that between Ava Grace (our wild child who has already had stitches 3 times in her 3 years on earth and who has had 8 surgeries on her Port Wine Stain - see side bar Port Wine Stain/Birthmark for more on that -) and Ty I feel like I could have some type of medical certification!  Chris and I recently took the CPR and Cardiac Care classes required before we can take Ty home.  This morning I have learned how to give medicine through the feeding tube and was told we will need to learn to put the feeding tube in as well!  I know more about the heart and how it works than I ever really wanted to, but now find incredibly interesting.  Ty has just brought a whole other world of experience and learning to us through his special self!  Not to mention genetics and his very unique y-chromosome mutation!  I'm confident we are learning more from our kiddos than they will ever learn from us!

So, today, like most days, we divide and conquer.  I'm at the hospital with Ty and Chris is being Daddy on duty (which he is amazing at, by the way).  I have to take a moment to brag on the man who has literally done it all the last 3 weeks.  He has offered to let me go home and him stay, to let me stay and him go home, and to do whatever I wanted whenever I wanted it.  Today I'm at the hospital and he has already gotten Ava Grace up and ready for school (complete with cute hair) and gone to the grocery store.  I know a lot of people know great guys, and I am probably biased, but I feel certain that I have the most amazing family man on the planet - don't know anyone out there (except for maybe my daddy) that loves his family so much and takes such good care of them.

I have to leave you with a picture my sister sent me last night.  I have been thinking from his first couple day of life that Ty looks like my side of the family, like a Stiner.  This is nice, since Ava Grace looks just like her Daddy and has since the day she was born.  So my sis sent me a comparison of Ty and his Uncle Ken - my brother.  What do you think - family resemblance?

Oh!  One more note, not to be forgotten.  I have been very meticulous about keeping up with funds raised for Ty.  Because I am wanting to be so careful and make sure each penny is accounted for and going to the right place, I didn't want to update our total or do anything, really, finance related while we were in this whirlwind of labor, delivery, ICU, surgery, and sleep deprivation.  That said, I finally had a quiet moment yesterday to deposit and calculate and make sure all the pennies were put in the right place and I have updated our total - check the side bar.  We are overwhelmed with gratitude and the generosity of others both in financial giving and, most importantly, in prayer support.  I don't know how in the world anyone could do this without the good Lord and while their spouse continued to work.  I certainly know that we couldn't have made this work, especially with our other two girls, without Chris being off work.  Each week we get closer to our goals - goals for Ty, which he seems to accomplish daily, and fundraising goals as well.  God has provided so much and in so many ways.  He has provided a way for Chris to be off while we are living this crazy schedule of hospital and home and is providing ways for us to chip away at medical expenses.  He has also provided miracles for our precious boy and his fight against CHD.  Through all of this, it is the most important to Chris and I that God be glorified.  We are thankful for our baby boy and for his heart defects, for it is through this that we have drawn nearer to our Lord and learned to trust His will and His plan moment by moment (and for a planner like me, this is no small feat).  

Thank you Lord for all that you have done and all that you are at work on and all that you have planned.  Amen.


Badlands said...

Praise God from whom all blessings come.