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!

Thursday, July 30, 2015

Blessings abound...

I find it harder when home (as opposed to the hospital) to sit down in front of the computer to update.  With all these cute kiddos running around and the usual home-making stuff on the to do list, time is precious and spare time is hard to com by.  However, I know that several of you out there don't follow facebook, so I am sure you are wondering what the latest is on Ty.  This week he graduated to the feeding seat so that he can now sit at the dinner table with us!

It wasn't as exciting as he thought it would be... either that or all the dinner activity and conversation was exhausting. He is turning into a very social baby and wants to be around us.  He is still doesn't care to be held a lot - part of his disposition and his history of starting life in an isolette not being able to be held, I'm sure. He has been in his swing near the table while we eat dinner every night, but that wasn't close enough to the action and the last few nights he was "complaining" about missing out.   So we got the feeding seat set up on one of the dining room chairs and now he is happy to be included in dinner conversation.  Ava Grace, who gets to sit beside him, is the most excited about the new development.

Yesterday Ty had his 4 month well visit.  He checked out just fine and is growing BIG TIME.  He is weighing in at over 14 pounds and has moved up to 19% and 21% on the charts for height and weight.  We are going to see a craniofacial guy because his fontanel is a bit on the small side, but it shouldn't be a problem as long as it stays open to one year of age.  We are getting it checked out just to be certain that all we need to do with watch it.

Ty also saw his geneticist a few days ago.  That visit went great as well.  They were very pleased with his appearance and he isn't showing any outward signs of problems from his chromosomal abnormality.  There is such little research out there on males that have 45x/46xy with a dicentric Y, but we believe that Ty will likely have little or no effect from his genetic mutation.  He will possibly be sterile, but that's not a certainty.  His heart was likely due to his genetics, but we are already dealing with that.  They still believe that although so rare on paper, this may be one of the most common genetic mutations out there - it just has such little effect that most people probably assume they just have reproductive issues for an unknown reason.  Without testing for other issues, in this case genetic testing because of his heart, they believe most people who have it just never discover it. We are going to an endocrinologist and a urologist to check him out thoroughly on the inside and make sure everything is as it should be.  With all the testing and scans he has already had in his little life, we don't expect surprises, but want to be thorough.  He will be followed by all of these doctors as he grows to make sure we stay on top of any arising problems.

For those of you keeping track, Ty is now being followed by 7 different types of doctors!  He has a cardiologist, cardiothoracic surgeon, pulmonologist, urologist, endocrinologist, craniofacial, and general pediatrician.  And he starts feeding therapy tomorrow.  Oh. My. Word.  My kid is well looked after.  Thankfully the little guy knows no different and just rolls with it.  

Enough about doctors...
At home we have been soaking up the love.  The last four months have been a blur for all of us and it is hard to believe that summer break is over in a week!  We are thankful that we got ANY days at home as a family, but it's hard not to wish we could enjoy a few more before work starts again.  We have been making the best of our time playing the days away.  We still live in a bubble for Ty's protection for the most part, but we have begun to venture out a little and that has been fun too.

 We have found lots of fun things to do at home though.  Thanks to Pinterest, we found this new activity that is a favorite of Ava Grace's and mine too!  Freeze little dollar store dinosaurs (or princesses, or any other kind of little plastic toys) in layers of a block of ice.  Then equip your little one with "tools" (we used a grapefruit spoon, salt, and syringes) to rescue the toys!
This was new and exciting for Ava Grace and afforded this mommy a full 45 minutes of time!  That's right moms, she played on her own for 45 minutes straight!  Mom win.  You're welcome.

We have spent quite a bit of time on our front porch.  We love our porch swing and have watched a few thunderstorms blow in, a few sunsets, and just enjoyed good swinging and conversation out there.

 We have also ventured to he pool a few times.  You know I am a water bug and just couldn't stand the thought of the kids not swimming this summer.  We mostly go to the indoor pool at the civic center so that I don't have to have Ty out in the heat and so I don't have to sunscreen Ava Grace's sensitive skin.  We did, however, catch one cloudy and sprinkly day that was perfect for a dip in the outdoor pool.  It was cool enough and there was enough thick cloud cover to not worry about heat or sun screen and we took our nephew John Harris with us!  So fun.

(Ava Grace had pringles for the first time in her life! lol.  Quack!)

Overall, we have had several days of summer fun.  We count each and every day a blessing.  I look at Ty several times a day and thank God that he is here with us.  I can't put into words fearing for your child's life, but I can tell you it gives you a deep appreciation for every second you get to spend with them.

My brother and sister-in-law are facing some big decisions right now and need lots of prayer healing and good health.  God has already answered prayers and worked miracles in front of our very eyes, so we praise Him and ask for continued prayers from you.

Last, but not least, I have to share a couple of Pinterest recipes I tried and we loved!  Click on the pictures below for the recipes.  They are both EASY, QUICK, and DELISH!  As in faster and cheaper than actual take-out.  The whole family liked it.  Another mom win for sure!


Shirley said...

Ty is such a sweetheart! Love seeing the girls looking happy too, it seems a much less stressful time for all. Keeping Ty, your mom and brother in my prayers.