Catching Up on this Wild Ride

Greetings all:

Well, it is painfully obvious that we failed this blog mission. Calvin is now three months old, and the last post was two months before his birthday….whoops?

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Calvin; Three Months and One Day New!

Calvin is getting stronger, smarter, more inquisitive, talkative, and happier every day. He is an amazing gift! I love this little dude from the the bottom of my heart. It is a really cool experience to become a father. The transformation from husband to husband and father is a really neat thing, indeed.

Anyways, I want to update you all on Calvin’s hospital life….or as I like to call it, his long stay at Hotel de Vandy.

Calvin was born on January 26, 2015 at 5:37pm (or 5:34pm, we are still trying to figure out which minute it really was). He was a 8lb-9oz bouncing, screaming, baby boy.

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Calvin in “the box” before his first surgery, the Norwood Procedure.

When they put the pulse-ox on him, his oxygen levels were in the mid-90s. That worried the doctors a bit, since he was supposed to be the 70-80s for his heart condition. To help bring his oxygen levels down, they put him in “the box.” Long story short, his high oxygen levels meant that too much blood was going to his lungs, and not enough to his body…his flow was dangerously messed up.

On February 2nd, Calvin went through the worst day of my life, his Norwood surgery.  It was a successful surgery, and he was only in the PCICU for 4.5 days. His recovery was quick. The rest of our time was on “the cardiac floor” where children get off oxygen, learn to eat, and get ready to go home. Our stay was another five weeks; some babies can stay here for up to a year.

That was a brief overview. We went home four times, going back tot he hospital for weekends or weeks in between.

Yesterday, Friday May 1st, Calvin had been in the hospital for a week, and went through his first heart cath, a procedure where they go into his heart through a cath, and take continuous xrays to better understand the construction of the heart. They can also test the pressures of various areas of his heart and lungs. Calvin was cleared for his next surgery, the Glen, but it was recommended to wait another 4-6 weeks if possible, just so his veins and arteries can grow a little more.

During his cath, they found a “little surprise.” Apparently, Calvin’s heart has a narrowed or mostly occluded coronary sinus. An issue that will need to be corrected during his Glenn, and unfortunately requiring him to go on the by-pass machine. We were stunned, shocked, saddened, but ultimately, it was always there, we just didn’t know it.

As one of his doctors keeps reminding us. Every heart baby is different, not one of them has the same defects in the same order of magnitude or same accompanying complications. If we don’t look alike on the outside, how can we expect that all of our hearts are the same. The fact is, each baby’s heart is different, and the doctors must piece together each baby’s heart story to figure out the best way to treat and heal.

There you go! You have all been roughly caught up. There are more details on our Facebook walls, so if you want to stalk Erica or I, go for it. All in all, from his 20+ echos, 15+ xrays, one open heart surgery, and now his first heart cath, Calvin has racked up a long list of complicated and rare heart defects. As much as my heart aches that he will have to live life with these, I hope he sees God’s grace in it all some how. I hope he wears them with a sense of pride and hope. That God has for some reason saw him fit to bear these burdens for His Glory.

As of May 1, 2015, Calvin is known to have Tricuspid Atresia, Hypoplastic Right Ventricle, Complete Transposition of the Great Arteries, Hypoplastic Aortic Arch, VSD, ASD, Mild Mitral Valve Regurgitation, and Occlusion of the Coronary Sinus.

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Our happy son.

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Prayers for Calvin

As most of you know, Erica is pregnant, and we are expecting a bouncing baby boy at the end of this January! Erica and I are truly excited, and cannot wait meet little Calvin Ray Thayer–so far all the ultra-sound pictures show that he is cuter than a button and most definitely takes after his mom.

At our 20-week anatomy ultra-sound we found out that Calvin had something wrong with his heart. Our general OB referred us to a High-Risk OB, and the news only got more devastating. The high-risk OB had never seen such a complex heart defect and had no clue how to diagnose his condition, as such, we were referred to Vanderbilt Children’s Pediatric Cardiologists.

At Vanderbilt we experienced a 2 1/2 hour ultrasound in which they studied Calvin’s heart very closely. At the culmination of our appointment, they diagnosed Calvin with Tricuspid Atresia and Transposition of the Great Arteries. As you can imagine from the name of it, it’s a pretty complex heart defect. The short version of the issue is that his heart effectually only has three chambers, instead of four. At the time of the ultrasound, his right ventricle was almost non-existent. The result is that his left ventricle has to work overtime. Also, with oxygenated blood coming from the lungs and un-oxygenated blood returning from the body both mixing in his heart’s one chamber, his blood-oxygen level will be lower than normal (about 70% instead of the normal 100%).

A Hidden Blessing

Thankfully, the left ventricle is the body’s stronger of the two, so it should hold up well into his adult life. In addition, there are two open heart surgeries that are available for Calvin. By the end of which, he should have normal blood oxygenation. Upon hearing that, we finally received hope that God has provided doctors with a solution to a major defect.

There are risks with the surgeries, but they are much improved over 40 years ago, when they began these procedures. Vanderbilt is even seeing two people with similar heart defects, one who is 21 years old and attending college, and another who is 36 and has a family. After hearing that, we were really encouraged.

Prayer

Nevertheless, we’d like to ask you for your prayers. Specifically, that God would give Calvin a new physical heart, much like he does when he saves us. We’re praying that his heart would grow strong and healthy–even though the doctors say that it can’t grow normally to fix itself. I believe that the growth of a baby in the womb is a miracle in and of itself, so in the next three months, I’m praying for another miracle. Jesus Christ, our risen Lord, has all authority over the fleshly realm, so I am convinced that he can heal Calvin.

In addition, at our last cardiologist appointment, they noted that Calvin’s Aorta was smaller than his Pulmonary artery. It was still within a normal size range, but we are praying that his Aorta will grow perfectly. If it is small, it would require a third surgery.

Lastly, please pray for myself, Erica, and our families. Naturally, it’s hitting all of us pretty hard. Please pray that our God would give us faith, and that we would all enjoy our Father’s steadfast love.

We’re encouraged: Our Community Group has prayed for us on multiple occasions, and we have heard reports about churches all of the nation praying for Calvin. Please join with our petition to God.

Research

I’m glad to answer any questions, so feel free to track me down at church. I know curiosity gets the best of us, so here is a short article about the condition:

http://www.childrenshospital.org/health-topics/conditions/tricuspid-atresia

Thank you for your prayers and love.

 

Tyler and Erica

“Rejoice in hope, be patient in tribulation, be constant in prayer.” – Romans 12:12