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Feb 28-Mar 06

This Week

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1 year old today. Not every birthday is created equal. We have lots of “big birthdays” in our lifetime, but what about “1”? What about when having a birthday at all seems like anything but a sure thing. 365 days ago, Beau had just arrived into the world, our first child that was such a long time coming. Everything was perfect. We had no idea what was in store for us starting just 36 hours later. As I think back on the past year, it seems in some ways like a lifetime, yet also seems so fresh and raw. That feeling of pure joy that turned in an instant into a feeling of shock, of helplessness, of fear; it imprints on your soul and you never forget it.

But I also think back on this year, and think just what an amazing example of the grace and power of God. 2020 will be to most everyone remembered as the year of COVID. For us it will always be the year of Beau. So many answered prayers, so many obstacles overcome, so many “God moments” to get us to where we are now. If you doubt God has a plan, just take one look at Beau. To say it’s humbling wouldn’t do it justice. 

As I look at this happy, healthy (98th percentile big boy type healthy), smiling 1 year old baby boy in front of me, I can almost sometimes forget that he has only half a heart in his chest. He has overcome in 1 year of life more than most will in an entire lifetime. I’m so proud of his fight, and admire his just pure zest for life. It’s almost as if he knows how lucky he is to be here. We sure know how lucky we are to have him.  

Since the last post, we have been blessed to really be able to enjoy some much needed “normal life” with Beau. He continues to do just fantastically well, even better than we could have ever hoped for at this point. He’s aced every cardiology checkup he’s had, which have all included a repeat ECHO to look at his heart and the new shunt they created during the last surgery. We are spaced out to 6 month appointments now. He’s down to only 2 medications, Digoxin for his heart rhythm, and aspirin for a blood thinner. Pretty soon he will outgrow the Digoxin, and then only be on aspirin from here on out. A far cry from the banks of medication pumps we had stacked up in the ICU. He’s no doubt gotten the tall genes from his dad, and is now up weighing over 24 lbs. He’s gone from not even registering on the growth chart during his first post-hospital visit to the pediatrician, to now in the 99th percentile for height, and the 75th percentile for weight. I’d say he caught up. 

It’s been really amazing to watch him grow and discover the world. He has a big personality, and smiles more than just about any baby I’ve seen. We have entered full mobility phase, and he crawls just about everywhere, but may be close to taking those first few steps any day now. That’s a scary thought, as he’s all boy, and into absolutely everything. We may definitely have some ER trips in our future, that have nothing to do with his heart. He loves his dog sister Marley, but also harasses her 24/7. He’s a big fan of his toys, but given all the toys he’s acquired over Christmas and his birthday, I may need to go ahead and build a new wing for our house. 

He’s finally gotten to meet his entire extended family now. He’s made several trips to see his 3 great-grandparents. He got to spend 2 weeks at the beach this summer, including one with his whole family and his cousins. I think he definitely has the love of the beach gene from his parents. He’s lucky to have both sides of his family in town, so there’s never a time that a grandparent isn’t ready and willing to scoop him up for a few hours. All his family including grandparents, aunts and uncles, and cousins were able to be there today to celebrate his big day, which was very special for everyone. 

So where do we go from here? Well, “boring” is good, and boring is the goal at least from a medical standpoint, but I’m pretty sure Beau will keep our lives anything but boring. He will continue with his cardiology checkups with Dr. Maggie, to ensure everything is still looking good and on the right track, but other than that next thing on the horizon for him will be his final planned surgery. This is called the Fontan, and will be done sometime around 3-4 years old. We will likely have some flexibility in deciding when that is, so that will be good. Until then it’s full steam ahead as a growing boy. 

It’s really hard to believe it’s been a year...man what a year. To think back about the day he was born, then to the storm that we were about to walk into that we had no idea was coming, then through 2 open heart surgeries, then to watching him open birthday presents today...just wow. Truly all the glory to God. To think back to our friend Gabe praying Ephesians 3:20-21 over him 363 days ago as he laid in the peds cardiac ICU, unsure of what the future held or if he even had a future, there is no question that the truth in that verse carried him through, and carried all of us through. God indeed did “far more abundantly than all that we could ask or think."

I never ever want to relive this past year, but I also would never trade it because of all that it taught us, and the amazing gift that it brought us sitting here 1 year later. We continue to be so humbled by the love and prayers for Beau by so many people. Thank you! We look forward to celebrating many birthdays to come! 

 

Michael, Leah and Beau

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