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, February 10, 2015

Vandy marathon #2

(Baby Ty at 33 weeks)

Yesterday we headed back to Vanderbilt for another day full of appointments with our medical team.  It was exhausting and full of questions and few answers, but it was a good day.

Every day, we praise God.  Yesterday he gave us a multitude of reasons to sing his praises.

1.
Our first appointment was with our MFM for another ultrasound and discussion of the findings.  What did they find?  One very big, very healthy baby boy!  Ty is already weighing in at 5 pounds with 6 weeks to go until delivery.  His head circumference is in the 95th percentile - yikes!  C-section anyone?  (kidding, we are still a go for vaginal delivery if he'll get his head down, but it sure does make me wonder if I'm going to be pushing out a 10 pounder).  We are PRAISING JESUS for his health!  Everything was the picture of perfection and the bigger the baby the better off he'll be for his heart surgery!  Big and Healthy = Thank you Jesus!

2.
We met with the neonatologist and toured the NICU.  I cried.  I can talk bout it until I'm blue in the face with anyone, with confidence, with a smile even, until I'm standing in Vanderbilt Children's hospital, in a litte NICU room, looking around through the glass into other little NICU rooms with tiny babies and tubes and machines and tiny little cries and computers everywhere.  It was a slap in the face... another little piece of reality sinking in.  Still, even though it hit kind of hard, it was GOOD to see where we anticipate being.  It was GOOD for the neonatologist to wrap her arms around me and tell me that she had a baby in the NICU once too and she has been there and that Ty will be so well taken care of.  It was good to hear they want us there and they want us to hold him as much as he is able to be held and that we are apart of the medical team and they want us there to participate and to bond and to be mommy and daddy even when we can't hold him.  Unfortunately we also learned that NICU is on flu season lockdown.  Last year they had 4 babies get the flu in the NICU, so this year until the flu ban is lifted it'll only be Chris and I and two other designated individuals able to see him.  Everyone else will have to be happy with pictures until we get out of the NICU.  That was a bit of a disappointment, but certainly understandable.

3.
We had another echocardiogram and another sit down with our cardiologist to talk about the plan.  This was the most frustrating and miraculous part of our day.  Ty is being so very uncooperative.  He is breech and facing my spine with his spine out towards my belly.  This makes echocardiograms VERY hard.  Ultrasounds don't like bone.  Looking through bone (his spine and ribs) to a teeny tiny heart doesn't reveal much but a very bleary version of what might be there.  I laid on that darn table forever while they pushed and had me roll to one side and tried angle after angle.  While our cardiologist looked, his fellow muttered quiet things to him like, "do you see that?" and "it looks like it is touching" and "there might be two there."  Not knowing what they were seeing was a little unnerving... would it be good news, bad news, the same news?  I prayed as I laid there, as I have been praying... for good news and for God to heal our baby's heart.  Last visit we weren't given much hope of change, medically speaking.  Defects like this typically continue to develop proportionally - so basically the defect would stay the same and we shouldn't hope or expect it to get much better or worse.  All this ran through my head while I waited for the echo to be done.  Finally Dr. Parra said, "Okay, well, we have put you through enough."  We headed to his office.  Chris and I had list of questions for him which he patiently answered and then we got down to what he had seen.  Even with a lousy view, he said that it appeared that the hole between the lower two chambers of Tyson's heart was much smaller than last time and maybe not there at all.  It also appeared that the one common valve MIGHT be divided or at least partially divided.  This would change his diagnosis from a complete AVSD to a partial AVSD!  In my book that is a straight up miracle - Thank you Lord.  If what Dr. Parra thinks he saw is correct, our CoArc repair after birth just got a lot easier.  If what Dr. Parra thinks he saw is correct, our second surgery might be at 2 or 3 years old instead of 2 o 3 months old!  Miraculous I tell you.  Of course, he tells us again and again, until Ty is here and they can do an echo directly on his chest none of this will be certain, but we are filled with hope and belief that God can heal our sweet baby!  

Dr. Parra told us that if the Coarc repair goes well and he ends up only having a partial AVSD it is entirely possible that Ty will have little to no limitations on life.  What?  Yes, he might even be able to be an athlete... if he wants to be one.  

We will now have weekly visits to our team at Vanderbilt and visit the 100 Oaks office every other week.  In addition, medical bills from all these tests and imaging appointments are starting the roll in and Chris has used all of his sick days up.  For this we also pray.  We know that God is providing and will continue to provide for our needs.  Thank you so much to those of you who have lifted and continue to lift us up in prayer.  Please continue to pray for healing for Ty and provisions for our family.  Thank you also to those who have felt led to give.  We are overcome with gratitude at the generosity that has already been shown to us.  God is using you, all of us really, in powerful ways.

5 comments:

Michelle said...

I am praying and believing God for healing and miraculous provision!!

Rebecca Upton said...

Meagan:
I enjoy reading your post and I am confident that Ty will do great because after all he is going to have your positive outlook. I passed your name on to a friend of mine, Jessie Akin, who is a NICU nurse at Vanderbilt. I have had so many people tell me she is awesome, so I have told her to be on the look out for you.

Badlands said...

Our miracle grandson is 3 years old and doing great!
VSD & a detached aorta at birth. Two open-heart surgeries before he was one. The prognosis is great for a long and healthy life. God is good!

Christine Tennyson said...

Prayers to you guys. You have such courage to share your story with us. Thank you!

Shari Stoneking said...

Praise God from whom all Blessings flow!