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, May 24, 2015

2 months old

Well, I never dreamed we would celebrate Ty being 2 months old in the hospital, but here we are.  This past week has been full of tests and putting pieces of the puzzle together.  Ty has endured countless sticks, draws, scans, and probes!  He's had xrays, ct scans, scopes, and even a ph probe down his throat for 24 hours!  His NG tube (feeding tube to his tummy) was advanced to NJ (to his intestines) and they stopped all tials by bottle, then his NJ tube was pulled back to NG and we upped his trials by mouth.  It has been a roller coaster.

(starting to coo and "talk" a little)

He, of course, has taken it all in stride.

 (Peek-a-Boo... I LOVE YOU!)
(first real tummy time)

We have added 3 new medications, oxygen, and a new diagnosis to the mix.  It's official.  Ty has pulmonary hypertension.  This can be some scary stuff.  It can have no cause and severely limit your life span and physical abilities or it can cause you to simply take some meds or change your diet and lifestyle.  It can be cause by something else going on - like a heart defect, and may go away when you treat the other cause, or may stay for life.  This has been a really tough one for Chis and I to accept and we are still struggling with the unknown of Ty's situation.

What we do know is that there is a possibility that if we treat some of what we think might be contributing, there is a chance (very very small, but still a chance) that this ugly thing called Pulmonary Hypertension will go away or be "reveresed."  We hare praying like crazy that this is the case because otherwise PH has no cure.

For now, the plan is to possibly send us home some time next week if he is doing well on all of his new medication.  We'll be under close monitoring from his cardiologist as well as his pulmonologist that we have added to the mix.  The goal is still to get to August or September so we can have his second open heart surgery and then see what things look like after that.

(LOVE this little swirl... been there since birth)

In the meantime we have been trying our best to take life one day at a time and enjoy it as much as possible.  We are trying so hard not to worry about the future.  Taking Ty home again is going to be a very scary thing for Chris and I.  Plus, Ava Grace has laser surgery in Cincinatti next week (see tab on sidebar for explanation of this under Ava Grace or PWS birthmark).  Her surgeries are rather routine for us at this point, but it means one of us will be home alone with Ty and the other in Cincinnati with both girls flying solo.  So, it should come as no surprise that we ask again for prayers and lots of them.

 (life in the hospital...)

 (Zoo visits and forts!)

There is nothing we can do but to rely and trust in God.  He has carried us this far and will continue to be our rock.  We have days when the fear creeps in or the "It's not fair" or "why us" drifts across our minds, but for the most part we have been able to give each day to our Heavenly Father and know that no matter what, we are in his hands and he has gone before us.  If it were not for his peace within us, neither of us would be able to function at this point.  Thank you Lord - we praise you for all that you have done, all that you are doing, and everything you have planned for us.

 (We have come to enjoy Pizza Perfect across the street)

(....and the baker around the corner)

(...and ice cream down stairs)

I have to also ask for prayers for my mom.  She begins chemo on Thursday and will do so every other week for 4-6 months before she can have surgery.  My heart aches for her and Daddy and my whole family, but I know that God will bring us peace, comfort, and joy in the morning.

Sing praises to the Lord, O you his saints,
and give thanks to his holy name.
For his anger is but for a moment,
and his favor is for a lifetime.
Weeping may tarry for the night,
but joy comes with the morning.
Psalm 30:4-5


Badlands said...

The Lord has put some big challenges in your lives lately.
Prayers from our family. We have been through some too.

Shirley said...

I pray for Ty and your mom every day.
Ty is so very cute!
Looks like the girls are doing their best to be on good behaviour, it must be a trying time for them too. May God bless all of your family.