In November, I tricked myself into believing that we just might actually be a normal family now. After 4 exhausting years since Annie’s pregnancy and broken heart diagnosis, we had finally let our guard down. It really didn’t take a lot of convincing. I had all the tangible evidence I needed.
Annie’s 3 surgeries were behind us. At her November checkup, her heart was functioning normally, a welcome shock to everyone. She was enjoying friends (and her favorite teacher!) and centers and lunches and naps at preschool two days a week. She was twirling and giggling and spinning and smiling in dance class every Monday afternoon.
Collectively we began dreaming about our normal family’s future, voiced and hoped loudly by Audrey, “When I’m 17, Annie will be 15! And when I’m 83, Annie will be 81! And next year when I’m 6, Annie will be 4. See, you just take off 2 from my age and that’ll be Annie’s age for the rest of our lives! Right, Annie?”
How do you break it to yourself and your dreaming daughters that we were all wrong?
The first clue came when each morning Annie’s face didn’t look normal anymore. It was puffy and swollen just enough to make us wonder. That same week, Matt and I noted how Annie was outgrowing her shirts…but not really her pants. Maybe she snuck some holiday helpings we hadn’t noticed? We knew that was too wishful of a reason that her tummy tightened and rounded. To confirm our findings, I had her step on the scale. Five pounds might be fair for me during the month of November, but for an active 3-year-old, the weight gain proved my suspicions.
Something was going wrong in Annie’s body. Her local cardiologist agreed and asked to see her in clinic the next day.
Annie endured the usual tests: echocardiogram, EKG, blood pressure, pulse ox. But we added an assessment that always tells the truth for Annie’s complex body: “a poke.” As expected, the results of Annie’s blood test told us the truth that we never wanted to hear.
Annie’s body is presenting with PLE symptoms, a rare but serious complication that can come as an effect of her Fontan physiology. The craziest part is that her once-failing heart is happier than ever. But now some other parts of her body are not responding well to the new way her body works since her August surgery.
The worst news of a PLE diagnosis is that it’s incurable. The best news of a PLE diagnosis is that her doctors in Philadelphia would like to do a little more investigating to see what might’ve set these symptoms off in Annie’s body. The symptoms came fast (1.5 weeks). The symptoms seem so soon after a successful surgery. But all of Annie’s care team agrees: the symptoms are very real and very concerning.
We are currently waiting to hear from the scheduling center at CHOP to confirm a date when they will perform a cardiac cath on Annie. The cath will allow her doctors to investigate and trouble shoot these symptoms. The investigation will help them decide if she actually needs an official PLE diagnosis or if there’s some type of fix for the sudden onset of her new symptoms.
Right now, we have a happy girl who’s smiling through the beginnings of regular days mixed with fact finding here in Little Rock. She’s proudly showing how to breeze through 24 hours of a holter monitor that assessed her heart rhythm. Right now, she doesn’t feel bad. She has no idea that anything off is happening inside of her. She’s resilient, brave Annie going to school, playing with friends, fighting with her sister.
But right now, as Annie’s mom, I know there are a lot of unknowns. A lot of what ifs. A lot of serious, scary maybes. Even some heartbreaking probablys. And I know that our normal family plans and expectancy were a lie I let myself believe.
Annie’s CHOP doctor assured me that we are in fact quite the better-than-normal family: staying together, loving each other, relentlessly advocating for the life of our child, believing when there’s not a lot left to believe in, passing on a faith that works to the next generation. While I certainly believe him, I think I feel tired of being known in all the hard ways. I’m ready for our family to be normal in some small, unnoticed ways.
We’d appreciate your prayers that we can keep believing that God’s plan for our family is the best plan for our family and that He’ll give us courage to live out what He’s called us to.