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!

Wednesday, March 25, 2015

Meet our handsome boy...

Yesterday was a long day, but worth every moment!  We fought crazy Nashville traffic to arrive at Vanderbilt for induction 30 minutes late.  It was a VERY slow start and I never made it past 3.5 cm.  Although I was contracting good and things were moving along at a slow but steady pace, Ty was not enjoying the process.  His heart rate was steady, but indicated he was tired and didn't fluctuate enough!  We rubbed on his head to "wake him up" a few times and each time his response was less enthusiastic.  The result, given his little heart already has plenty of challenges, was to go ahead a do a c-section just to keep us out of any trouble.  So, at 7:00 we started getting ready at 7:24 we met our precious baby boy!

Ty arrived crying loud and clear and pinked up pretty quick with the help of a little oxygen.  He weighed in at 8lb 7oz and measured 20.5 inches long.

Ty's NICU team did a quick clean up and started his IV right there in the operating room and then I got in a quick kiss before Chris and Ty's very talented team of doctors sped over to the Children's hospital so start his full evaluation.

It was all hands on deck in the OR and I was ever so thankful for each and every wonderful doctor and nurse who helped get Ty here safely!  

About 10:30 last night I got to go to the NICU to see Ty for the first time out of the operating room.  He is such a sweet and handsome little guy!  I felt blessed to get to touch his soft cheeks and tell him how much I loved him before we headed back to rest up.  He had a big night of rest himself and a preliminary echo cardiogram to see how things were looking.

Chris and I got up bright and early this morning and headed straight to the NICU to be there in time for rounds.  While we waited for his medical team to make their way to us, his nurse asked Chris if he would like to change Ty's diaper!  We were pretty stoked at the opportunity to help care for him!

After he had a nice clean diaper on, they asked if I would like to help wash his hair!  It was so fun giving him his first shampoo.  Well, at least mommy thought it was fun, Ty didn't enjoy it quite as much.

 We put on a nice clean and dry hat on that freshly washed head and then it was time for rounds!  The doctors has news for us after reviewing his echo.  First of all, he is doing VERY well and his stats look great!  His pulse is a little weak in his lower limbs, but they aren't yet sure if that is because of his coarctation (narrow portion of his aorta) or if that's just Ty being Ty.  Tests from today will let us know and we'll find out at rounds tomorrow morning.  

They said his coarcatation is a pretty big segment of his aorta, and they are debating whether or not they can do a thoracotomy (go in from the side for the repair) or if they will need to open his whole chest ("open heart" surgery approach). Ultimately that will be up to his surgeon and we may know that tomorrow as well.

 The great news of the day was that his AVSD is looking much better!  The hole in the lower chambers is almost completely gone and his valve is functioning well!  This means surgery #2 that will be open heart for sure may be postponed for a year or two! 

He had a few other tests today - they scanned his head and kidneys just to make sure everything looked good and he passed with flying colors again.  We will find out more detail about his second echo at rounds in the morning!

 This afternoon Daddy got to change another diaper and we got to give him lots of love and kisses!

 As you can imagine, we are already deeply in love with this little guy and we are dying to get him in our arms!
 Because of his condition, he gets all of his nutrition through a central line in his umbilical cord.  Babies with heart conditions usually aren't allowed to eat the traditional way until fully recovered from surgery.  However, the medical team thought that he was doing so well that they might let him try a little bit of breast milk to see how he does.  This is an area we need prayers for as I have not been able to produce any milk yet.  This was major motivation for me, however, and I am pumping away and doing all the tips and tricks I know to see if I can produce enough for him to try!
 Another area we request you pray for tonight is the coarc repair!  If they are able to go in from the side it is less invasive with a shorter recovery period.  For that reason, our prayer tonight is that his coarctation is able to be repaired from the side instead of through the middle of his chest!
 Most of all we are praising God for this beautiful boy.  We are thankful for a safe delivery and we are praying for healing and recovery for me and Ty both!
One last note on today...
My Mom and Dad, who are in town keeping Ava Grace, brought her to visit today.  It was such a bright spot in our day.  I had been having a lot of severe muscular pain in my shoulders and back and when Ava Grace and I snuggled up together, my pain literally melted away.

There is no gift more precious than a child.  No matter how big or small, they are certainly God's biggest blessings.


Rob said...

I am such a lucky uncle!! Crystal and I are elated at the news, keep it coming. I know Ava Grace is chomping at the bit to start being a big sister. Just remind her that she is still a middle child, sort of like her Uncle Rob...LOL

Emily Belitz said...

He is the most beautiful little boy! Congratulations!
Love you!

Shirley said...

What a beautiful boy! I will keep him in my prayers and will add a special prayer for the surgery to be able to be done from the side.

Trisha Morgan said...

So happy for your precious family. He is just beautiful! I've been praying for you and Ty. Thank you for being so transparent. I know that some times it doesn't go without critism but you are an inspiration to many. When you walk boldly with the Lord there is always opposition. You my friend are a light shining brite for our Father and you are such a great example of leaving everything in his hands. To God be the glory for the amazing things he has done thus far. He isn't done yet! Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, accordingly to his power that is at work within us". Many Hugs and prayers ! Trisha Morgan

Becky Johnson said...

So glad to read all the updates! Praying with many others for you and your family!

Sandi McDaniel said...

Oh Meagan and Chris, he is such a beautiful child! Just keep your eyes on the Lord, and he will give you strength
And peace. My love and prayers to you, Ty and the Girls!!!