Owen is our first heart warrior to kick off this #bradystrong campaign and it's only fitting that we get to share his remarkable story - and the ups and downs of living as a CHD patient.
These are the words of Owen's father, Matt Westerlund. Be prepared to chuckle, choke up with tears and feel inspired.
"Owen was diagnosed at the 20 week ultrasound. Like so many stories, we heard the same "I can't quite see everything so I'm going to send you to the bigger hospital where they have better machines" line. We knew in our hearts that it meant something more than that, but we were happy to try and lie to ourselves and try to believe them. At the second ultrasound we had the after meeting with the Doctor, followed by more meetings with Cardiologists and the Surgeon. We felt comfortable enough with those meetings that we didn't feel the need to travel the 1.5 hours south to Boston Children's for the surgeries. When you hear stories from all the nurses and other doctors about the surgeon and how he performs 400 heart surgeries a year and has professors from Harvard Medical school marveling over how good he is, it tends to reassure you. It was nice to be closer to home for all three of the surgeries, even though we usually still stayed at the local Ronald McDonald house to be 5 minute walk vs 45 minute drive away.
Owen at 2 days old after his first open heart surgery
Owen's official diagnosis was HLHS with Transposition of the Greater Arteries (TGA). I still don't know off the top of my head if it is D or L-TGA; it took such a secondary place to the HLHS. What we do know is that the TGA turned out to be beneficial with an HLHS heart. During the Norwood, the surgeon did not have to reinforce the Aortic Arch as would normally happen. This made for a fast recovery and we were home 14 days after he was born. Through all of this we were able to avoid having a feeding tube put in and were even able to breastfeed over formula. We had a similar speedy recovery from the Glenn - we went in for surgery on Wednesday and headed home on Friday or Saturday.
Owen after his second open heart surgery
Then came the 2-3 years of waiting to see when he would be a good fit for the Fontan. Very uneventful years where we finally got a chance to think about all that life meant for him going forward. Watching as he tired out faster than his brother, had blue lips anytime he was in water, and also watched him start swinging on the trapeze swing I had built in our living room. He and his brother were typical athletic boys, running and jumping off of everything.
Owen's Fontan - third open heart surgery
We were completely unprepared for the ordeal the Fontan was for us. We call it "The Lost Year." In January, Jami's father was diagnosed with Colon Cancer and given 6 weeks. He lasted exactly that. We went out to the funeral in Late March, came home in early April and started planning George's Birthday party for May 2nd. May 29th was the date of the Fontan. We went in thinking we'd be home in a week or so.
We weren't prepared for what happened.
The amount of pain that Owen definitely felt, the fact that he didn't smile for about a week, coming home with a drainage tube still in, having to explain to him that he couldn't get to the bathroom on time with it pinned to his pants (he had basically potty trained himself just before this and it set him back so much that he only just stopped having accidents regularly this last year). We kept expecting to be able to get the tube out and it kept draining. Eventually it stopped, but not like it should. We had to go back in after 3 weeks and be readmitted. He endured much pain with tubes being pulled out and put back in again. He hid his head under his blanket anytime someone in a white lab coat walked in. Finally we learned that his lungs had adhered to the inside of his chest wall and they had to go in and scrape them off from the inside. Through all of this, he was retaining liquid and was barely allowed any food.
He was miserable. We were miserable.
George - who at barely 5 had grasped the concept of death when Grandpa passed - thought for sure his brother would never come home. To this day, George - a kid with a steel trap for a memory, remembers things from before and after that summer, but nothing of during.
Finally the draining issue was solved and a proper recovery finally began. Two more weeks of being in the hospital from the end of June through half of July and we headed home, still on O2. When the O2 came off a couple days later, George finally settled back to normal and stopped worrying that his brother would die."
Yes. I told you. Make sure you have the Kleenex nearby to wipe away those tears you're trying to choke back.