Backwards but brave

Today was Liam's cardiology check up. There were no great surprises but it is always just a heavy reminder that we parent a child with a very serious heart defect. It is so easy to forget most days when he is running around the house or riding his bike that his heart has a string of diagnoses: ASD, VSD, CCTGA and a host of associated valve issues.

Our cardiologist said that she always has to pay special attention to looking at his echocardiograms because everything is backwards and I compared it to when I, as a meteorologist, have to do weather in the Southern Hemisphere. Nothing looks how you expect it to.

Not much has changed since his last appointment late last year. One of his valves has gone from having a mild issue to have a mild-moderate issue so we will keep an eye on it. Many kids with Liam's condition have already had at least one surgery and some have pacemakers. For now, we will just be thankful he's made it thus far without major intervention.

Our cardiologist did suggest getting a second opinion at Texas Children's Hospital so we will probably do that in the next year. She said that there are no easy answers with CCTGA patients because we either risk 2 complex heart surgeries with risks of complications now or we wait and most likely he will end up with a heart transplant. The advantage of waiting is that medical technology continues to improve and there may be a better option with lower risks down the road.

I'm sure we can manage to combine a hospital trip with some fun memories in Houston and Galveston so we will start planning. I'm thankful we have such great doctors and hospitals in this state.

And for now, we keep waiting and praying he stays healthy and active and remembering this:

Trust in the Lord with all your heart, and do not lean on your own understanding.
Proverbs 3:5

Unanswered Questions

"Any family medical history we should know about?"

It was a standard question. It came after asking about allergies and current medications. The medical technician was just doing her job, but after she left the room to get the doctor, it left me thinking about my son.

I was just in for a sinus infection but it's funny how adoption creeps into every area of my life now. I thought about all the times my son will be asked that question in his life and how he probably won't have much of an answer. I've ordered a DNA testing kit for him and hopefully it will shed some light on the shadows of his medical history but there will always be lingering questions.

I'm thankful to take my kids to an orthodontist who has adopted internationally several times. At the bottom of all the of the family medical history options to check off, there is a box that says, "My child is adopted and I have limited medical history." Tears sprang to my eyes the first time I saw that. I felt understood.

The truth is though that each one of us probably has a little list of unanswered questions. One of my favorite MercyMe songs addresses this in a way that floods my heart with peace:

Why?
The question that is never far away
The healing doesn't come from being explained
Jesus please don't let this go in vain
You're all I have
All that remains


When my son hears that question, I pray that it doesn't bring pain. I hope that we raise him to know that none of us has a complete picture of how we ended up where we are but that God is still writing a beautiful story even in the unanswered questions.

Heart to Heart

I realized looking back through this blog that I never really talked in detail about Liam's health. In fact, I wasn't even 100% sure what his diagnosis was until we got him home and to a cardiologist. When I met him in 2014, he was listed as having VSD and ASD; 2 common heart defects. Then we got his full medical chart and I could see that he actually had been diagnosed with CCTGA (aka L-TGA) which is Congenitally Corrected Transposition of the Great Arteries. It is a more rare variation of TGA where, as his cardiologist explains it, "two wrongs made a right" and while his arteries are reversed so is the bottom half of his heart.

So hey, what's the problem right? Two wrongs made a right! Except that you are asking the weaker atrium to do the harder job. And usually CCTGA comes along with other issues and in Liam's case he has some valve weaknesses and pulmonic stenosis. Currently these issues aren't bothering him, he appears as a healthy, active child and he is not on any medications and has never had a surgery. The future though is unknown. The most likely scenario according to our cardiology team is that we will probably leave the "backwardsness" of his heart alone and just repair the valves down the road. There are people who have lived long, healthy lives with CCTGA with no interventions.  Could he one day need multiple open heart surgeries? Maybe. We don't know.

What I do know is that we love the stuffing out of this kid. He's beautiful and perfect to me. I don't know that any earlier intervention in China would have made any difference to how he's doing now. I wonder constantly what his first months of life were like and what the doctors even thought without the types of tests he's been able to have performed in America. Hopefully, someday I will have some of those answers but no matter what is left unknown, God is writing a beautiful story in Liam's life. He is an unbelievable blessing.

His English is coming along great. So great that the other day he looked as his sister (who is only 14 months older) and said, "You know what? You're not funny!" Maybe this doesn't sound like a miracle but it means he's able to be a little stinker in English. He constantly makes us laugh. He loves to be involved in whatever we are doing and he is eating a ton. Things still are new for him. He had his first jelly bean and had no idea what to do with it. He met the Easter Bunny and was a little confused. But everyday, he is weaved deeper into our family and deeper into our hearts.