Why me, God?

Monday, July 31, 2017

Last year's "Stratford Days" was really, really rough on me. We had just announced our pregnancy a couple weeks prior. It was Walter's ten-year reunion and everybody and their mother was coming up to congratulate us. Little did they know we had just found out our son would be born with serious heart problems.

Two days before the celebration, July 28th, we drove back from my 20-week ultrasound appointment in Amarillo. I sobbed, ugly cried as they say, the entire ride home. My OB told us he wasn't sure exactly what was wrong with our son's heart, but he knew it was bad. So bad, he said he was referring us to a maternal-fetal specialist in Lubbock and that we would have to prepare to deliver our baby in a much bigger city where they knew how to handle this sort of thing.

I asked, why me, God? Why me?

Flash forward, people. We just got done with Stratford Days yet again. And this time, we celebrated as a family of THREE. I watched proudly as my son sat in his "big boy" stroller seat for the first time. He was mesmerized by the cars, fire trucks and horses in the parade. The kid loved it! I thought, wow, he we are. We made it. 
Watching the parade with one of his favorite Stratford friends
Crazy to think just a few weeks ago I was in Houston having very mixed emotions about finally coming home. I realized, oh hey, it's been almost a year since diagnosis, AKA, D-Day. I figured I'd wake up sentimental and make a post about how I couldn't believe it had been a whole year. Instead, I had another incredibly busy day entertaining Augie. I didn't realize I had missed the date until standing there smiling at the parade. Doing such normal things...truly a blessing!

Everything has come full circle. After anticipating his birth for a full month and then living in Houston for the seven that followed, we got to come home. Everyone and their mother came up to congratulate us again. I fought back tears again. But this time of joy, not of pain, or anger, or fear.

Enjoying some pool time and a cracker after the parade
Our journey with Heterotaxy will never be over. Augie's heart has only been repiped, not fixed for good. And in recent months, we've been able to confirm that his intestines are malrotated. We will be traveling to Houston for another procedure. I'll post again soon for that. Good news is, this trip should be much quicker than the last!

For now it's just so good to be home! I no longer ask God, why me? I think, thank God it was me. Together with my hubby, I've been able to tackle this major obstacle in our son's life. We're not perfect, but we are equipped emotionally, physically, financially, spiritually, etc. If it could happen to someone, thank goodness it happened to us. Thank you, God.
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Tick-Tock

Monday, July 10, 2017

Having the idea for this post, I googled, tic toc or tick tock? Turns out, it can be tic toc, tictoc, tick tock or tick-tock. I'm going to go with the latter because the AP-stylist in me likes hyphens. The spelling became less important when I read the definition anyway. 

tick-tock
noun 
A clock; also, by extension, the human heart: wind the tick-tock/ tick-tock is going strong at 70 
The Dictionary of American Slang, Fourth Edition by Barbara Ann Kipfer, PhD. and Robert L. Chapman, Ph.D.
Copyright (C) 2007 by HarperCollins Publishers.

Wow. My reference, you see, was to describe the sound of a clock: tick-tock, tick-tock. But maybe it is, in fact, the sound of the human heart that's inspired this post. Yes, I think so. Tick-tock, tick-tock. The sound of my son's beating heart. 

Tick-tock. It's mid April and I'm lying awake in bed again. I'm facing Augie's travel crib, staring hopefully at his pulse oximeter machine, watching the waves and numbers fluctuate. 76, 75, 73, 72. . .back up to 75. C'mon, go to high 70's, I think to myself. 75. . .76! OK, now I'll close my eyes and try not to worry. After all, the thing alarms if he goes below 70. 

I spent many nights gambling with the pulse oximeter, watching his oxygen saturations creep lower and lower over time. We knew this would happen yet it's frightening, especially after seeing the story of a fellow CHD mom posing with her baby in the mirror. From what I remember, she was taking a selfie with her baby at the three-month milestone. But then at four months, she posed alone, sobbing, holding her baby's onesie and four-month sticker. This mom was in a similar situation. At home with her baby, awaiting another stage of surgery. I feared, my gosh, Augie is about to be four-months-old. Could this be me? 

Tick-tock. It's June 7th and I wait and wait...and wait. My baby was taken back for surgery at 7:30 a.m. and I get my first update at 9:00. It goes something like this, "Augie is sedated, and all lines needed for the surgery are in place. He's comfortable and all is going well. They should be starting to work through the skin and then enter the breast-bone. This will be the longest portion of the surgery. The surgeon will be extra careful due to the scar tissue from his previous surgeries." 

An hour and-a-half later, I get another update. Still working on the incision. The day goes on, update after update. Until finally, the surgeon himself delivers the last update and I can breathe a sign of relief. My son has survived his third open-chest surgery. For the third time, his teenie body was opened up. His heart was connected to a bypass machine. He received donor blood. His vessels were severed and reconstructed to give his abnormal arrangement a more efficient function. He was taken off the bypass machine and his heart worked on its own once again. He was sewn shut. Drains let out residual blood and fluid. A ventilator kept him breathing until he came to. 


It's all so intense. Yet this last time, it felt so normal. It's a part of Augie's life in order for him to have a life. Our thoughts are, wow, at least they didn't have to 'turn him cold' to perform the surgery like last time. 
Finally getting to snuggle a just-extubated Augie two days after his Glenn surgery
Tick-tock. It's July 9th and I wait and wait...and wait. Wednesday can't come quick enough. On Wednesday, we plan to pack up our SUV with a little U-Haul attached and finally see Houston in our rearview mirror. Guys. It's been almost eight months since I've left the Houston metro. Eight...that includes Thanksgiving, Christmas, New Years, Valentine's, Easter, Mother's & Father's Day AND the 4th of July! And I can count the times I've gone outside of Loop 610 on one hand. To be clear, this is more of an expression of disbelief than a complaint. I will stay in Houston as long as I need to to ensure my baby is healthy enough to go. But now, apparently it's time. Augie's cardiologist even looked at me and said, you need to go home now. 


It's time to show our son where he really comes from. It's time to let his daddy finally get back to work in person! It's time for him to see God's country made up of endless miles of fields and the most beautiful sunsets in the world. It's time for him to meet his dog! Getting home won't happen overnight. We must make pitstops in Dallas and Lubbock for a wedding and a doctor's appointment. But if there's one thing I've learned in all of this, it's patience! Of course, we are nowhere done with Houston. We'll be back for check-ups and consults. And yes, more surgery down the road. 

Choosing not to live life in a complete bubble at the Astros vs. Yankees!
So now is the time I ask you for help. Please pray for our safety and Augie's wellbeing during our trek across Texas!  Also - if any of you feel inclined to do something in his honor, donating blood is a great gesture! If you are a donor already, we thank you too! 

Tick-tock, tick-tock. The sweet sound I hear when I put my ear to Augie's warrior scar. It makes these months spent watching the clock so worth the while! Thank the Lord and thank you everyone for your prayer and support! 

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