Tales of a TET Baby: Wise Words From My Heart Warrior

Today is my least favorite day of the year. It's Zane's cardiology appointment day. In good news currently it is seriously just one day a year where the realities of his condition and all that lies ahead have to be discussed. In even better news, after years of making this day a "special day" for Zane, the idea has stuck and it has become his favorite day of the year. He's been asking me when his heart doctor day is for months. Frankly I would have forgotten to make the appointment if it wasn't for his pure excitement about it.

This joy about heart doctor day is in no way an accident. For the past five years the day he went to the cardiologist was a full day of Zane and Mommy fun, after the minor detail of getting and EKG and echo in the morning, and causing his mother and father's PTSD to flair up. In St. Louis Zane and I usually spent the afternoon with friends going across the street to the zoo to see the penguins or to the Science Center to explore. Here the tradition for the past three years has been breakfast in the morning at Panera Bread (which is across the street from his doctor) and the actual doctor's appointment with Dad. This was followed by picking something out at the Toy Store for being so good (a hold over from the days of having to hard bribe him to sit remotely still during the echo portion of the doctor's appointment), lunch with me and whoever else we could get to join us, and a movie in the afternoon, all without Rowan. So still a big day of fun! It was a lot of work, mainly to get him to behave and not freak completely out with all the tests, but also a great day to celebrate his little life and help him to not be scared or dread going to the doctor. All the hard work has paid off!

This year he's in school so I made the earliest appointment with plans of getting him to school as soon as possible afterwards. For days he's been anxiously counting down until heart doctor day. When he got strep over the weekend I got very concerned we might have to reschedule for him or I being sick, which would have been devastating, thank God all was well today and we could all go. Yesterday, while home sick from school, he asked what the schedule of events for today was. So I said, "Oh we're just going to the doctor really quick then taking you back to school." Boy was I put in my place fast, "Mom, my heart doctor day is special, remember??? First we go to breakfast AS A FAMILY, at the white mac and cheese place across the street from the doctor (Panera Bread). Then I get an arm hug (blood pressure), the Christmas tree stickers (EKG), and  the magic wand (Echo). Then the doctor talks to us and then you and I go to the Toy Store to get a toy for how good I have been. Remember!!!! I use to get to go to the movies, but now I have to go to school." What an amazing memory you have  my son.

We were up early today for our eight a.m. appointment so we could have breakfast, as a family, before his doctor's appointment. This year was the first year that Rowan got to come as well. Zane was very excited to show him all the things he gets to do for his heart. I've loved listening to his explanations of what actually was/is wrong with his heart and how it was fixed. Rowan was wide eyed most of the time, watching very carefully has people put stickers and goo on his brother's chest. Zane reassured him that nothing was hurting him and that he was fine. Rowan also made sure everyone was aware that he too was a big brother, so not little anymore.

As for the appointment it was the first year there has been any slight variation in what the doctor has told us, either here or in St. Louis, about where we are with his condition. Usually they ask the hilarious questions about his energy level, "is he able to keep up with the other kids, does he complain of fatigue or chest pain" all that good stuff. Which is always met with lots of chuckles from Zach and I. Then they tell us that nothing really has changed, to not restrict his activity, and remind us, again (as though there is ANYWAY we could possibly forget) that he will eventually need a valve replacement. Up until today the doctors usually said "when he is a teenager" he'll need a valve replacement. Today the doctor talked about the need for further testing, specifically an MRI, to get a more accurate measurement of his heart, specifically his right ventricle which is what has to work harder since his pulmonary artery valve doesn't work at all. I knew this was how they got more accurate size measurements of the heart, I'm not sure I knew that he would have multiple MRIs. I always thought he would just need one prior to his surgery. However, today the doctor explained he would need one at some point over the next year, to set a baseline measurement of where we are at currently with his heart size, then he would need them periodically for the next few years, and the kicker "but he will probably need a valve replacement sometime BEFORE he is a teenager."

So yeah this is the first change in care routine we've had since going to one year appointments post operatively. It's not a huge deal right now, obviously none of it can be surprising to us, since we have known since the day of his surgery that another surgery was in our future. I did ask if him being huge for his age (both in weight and height) would cause him to need a valve sooner. The doctor didn't seem to think so, more just a matter of time, and how hard the heart has to work. Which to me the bigger you are the harder your heart has to work, so it only makes sense that him weighing seventy six pounds at six years old would speed things up, but who knows. As always the doctor reinforced that there is no need to restrict his activity now and that they will want to replace that valve before he has any symptoms from the right ventricle getting larger. So we won't see any changes in Zane before we're told it's time for surgery.

This news set me back on my heels just a bit. Again, I can't say I'm surprised, I know how this will play out. But an MRI is a bigger deal in children, they have to be sedated for it, which some kids react terribly too, some kids aren't bothered by it at all, but it's another step that can be quite frightening to a child. It is just a sign, and a wake up call, that the surgery is probably much closer than we've been telling ourselves for years. Picturing a sixteen year old boy getting open heart surgery is slightly different than say a ten or eleven year old. With this shortened time frame the possibilities of the valve replacement being able to be done in the cardiac cath lab, verses by an open heart procedure, are also highly decrease.

After the appointment I told Zane we could run into target and get him a Lego set, because I'm mother of the year and why not. On the way there I was teary eyed, thinking about all that lies ahead, dreading all he'll have to go through, and frankly being terrified of the possibility of loosing my sweet boy. Zane asked what was wrong and I, very honestly, told him I was sad that he's going to have to have another surgery someday, and I'm scared about it. His response sums up why I love Zane so much and again truly put me in my place. "Mom, you gotta just move on with your life. I'm not having surgery today. I'm fine, it will be fine, just move on with your life!" That was just the jarring words of wisdom I needed, provided to me by the six year old, who will have to live through all that I dread. And yet another AMAZING reason why I do not work with adults. Kids live today. They enjoy today or they are miserable and in pain today. But it literally just today. That's their only line of sight. They don't think five or ten years in the future because that's as long or longer than they've been alive. They deal with what they are handed in that exact moment, good or bad, with all of their hearts. They live their lives, with no worry about what's to come.

So I am trying to live right now and enjoy right now and not spend the next how ever many years in a constant state of fear, worry, and sadness. Definitely living in the moment, trying to soak up every instant with my children because tomorrow isn't promised for any of us. I am trying to let myself be ok with that and not just feel like I'm in a horrible state of denial all the time. I am really not, I do not deny what is going to happen and what all we're going to have to go through, I just can't live there and dwell in it. I have to move on with my life, as my wise heart warrior suggested!! I love him so much and have no idea how I got so incredibly blessed to be chosen as his mommy!