Hey there Bowen’s heart family! It’s hard to believe it’s been eight months since we’ve posted. We think of you all the time. To those who have been asking for an update, I’m so sorry.
The title explains it all. Bowen is living life to its fullest. The other day he was swinging and he yelled out, “This is the best day in my world!” Ahhh, those words were music to my ears. This from a kid I watched dying before my eyes, and I remember it like it was yesterday because the deep ache of those days are branded on my heart and mind. I remember hoping with all my heart that he would get the chance to live life with us. Everyday I reflect on all we have been through, and my gratitude and joy run so deep.
I see that same joy in Bowen, and I hear his own passion for life in his voice when he sings. From the moment he wakes up until it’s time to go to bed, he wants to play music, especially his drums. He invites anyone who walks through our door (or walks past the house for that matter) to come to his concerts. Matt built a small stage in the basement, and Bowen takes anyone who is willing to watch him perform, down for as long as they will stay. And that can be a very, very long time. I will say though, he’s quite entertaining as he moves from instrument to instrument, pausing to be the lead singer, while walking out into the “audience” to give high fives. It’s so cute.
Whether it’s building with Legos, putting together puzzles, playing outside, or playing rock band, I love to see how Bowen interacts with his siblings and other children. We haven’t put him in pre-school yet, but he loves getting together with friends or going to church. At church, he goes in like a big boy and loves having his own teacher and friends. He’s so kind, well behaved, is a good listener and hardly ever gets into trouble. His attention span is pretty surprising for a three year-old. For example he can sit through a whole movie intently at the theater, or an entire Sanctus Real concert and be bummed when it’s over.
On that note, just let me say one more thing about what a sweet boy Bowen is. You wouldn’t believe how verbally affirmative he is. He often melts our hearts when he tells us in his own creative ways that we’re the best mommy and daddy in the world, or how pretty and handsome he thinks we are. You should hear the kind words that come out of his mouth. We’re so proud of him.
As far as Bowen’s medical status, he’s stable and doing really well. If you saw him you’d be able to tell he’s pretty small in size, only 32 pounds. That’s around ten to fifteen percent on the growth charts, but hey, I’ll take it. Developmentally he’s a rock star, and as I already mentioned, well behaved, socially engaged, and don’t you dare try to beat him in a game of memory. It’s crazy how well he remembers song lyrics (sometimes in their entirety), drumbeats, people, their names, and the details of events he’s experienced. One thing that’s interesting, though, is that he still can’t remember or identify colors very well. I’m not quite sure what to make of that, but wonder if it has something to do with some of his previous trauma.
Bowen’s resting oxygen level is mid-low 80’s. Sometimes it can drop into the 60’s when he’s playing or tired. I know this is extremely low, but our doctors are comfortable with it as long as his resting oxygen levels are good, and they are. His heart function is better than ever, he has mild tricuspid regurgitation, and no AVM’s per his echo. His blood pressure is normal, and he’s only on Aspirin and a multivitamin. His sugars are stable.
As we’ve mentioned before, Bowen is a Hemi-Fontan, or Glenn stage repair. Many hospitals would recommend he have his Fontan by now, but I’m not fully convinced that now is the best time for Bowen to have it. Waiting doesn’t put him at any greater risk than moving forward. Our doctors at MOTT have heard our perspective, and although they do not promote delaying the Fontan, they do understand and support our choice for now. In fact, I’ve consulted several doctors at different institutions across the country, and though it’s less conventional, there are several well-respected doctors out there who keep the majority of their single ventricles at the second stage indefinitely, so delaying seems reasonable. I’ve done a lot of research on the subject and Matt and I are still weighing it out. We are keeping an open mind and heart about Bowen’s next procedure, and will know if and when it’s time for him to have his next surgery. New studies are always emerging and they’re learning so much every year as single ventricle patients are growing older. In essence, we’re safely buying a little more time.
Each moment we get with our little ones is a precious gift. I think of parents who have lost children everyday, and I find myself weeping out loud for them at times. I receive a lot of emails from parents, whose babies have just been diagnosed with heart disease, and I remember how terrible those weeks and months felt to us. It feels like a dark cloud has been cast on your life, and at times it’s hard to believe there is still a sun. The moment you are told you have a sick child growing inside of you, your life is never the same, no matter the outcome.
To anyone reading this who has just received a painful diagnosis, or to the parents who are sitting at your child’s bedside in a hospital room even now; I was mistaken to think that life would never feel wonderful again. Yes, there will still some rainy days to come, but for now the sun is shining and our skies are blue, not a cloud in sight. So remember in your darkest days that the sun will shine again. Hold tight to your one true hope, our well of eternal promises, Jesus.
Our thoughts and prayers are with you, and thank you sincerely for the times your thoughts and prayers have been with us.
With gratitude and joy,
* Here are a bunch of pictures from the last eight months!!