Watchful waiting

Allen: Waiting was excruciating. We basically had one follow up appointment with our pediatrician to get another measurement and weigh in, and then if that was telling us anything one way or the other, we were going to make a decision. When that appointment came and we made the decision to schedule the surgery, there was a very large mixed bag of feelings there. There was a huge amount of anxiety because “Okay this is going to happen and we’ve now made sure that this surgery is going to happen.” Even though we knew it was going to happen, scheduling it is a different animal.

But there was also some small bit of relief that “Okay, the waiting is over. This is going to happen now.” After that, it gave us something to focus on as opposed to something that’s a little bit ill-defined. It’s like “Okay, there’s this surgery somewhere in the future” so we’re kind of walking on eggshells, whereas we were walking on eggshells for a different reason afterwards. It was “Okay, this surgery is happening, let’s focus our efforts on getting ready for that, both logistically and emotionally.”

Miranda: And I think one of the weirdest things about that waiting time was, as parents, we knew what was going to happen to our kid, but our kid didn’t know. And the two of us trying to set the tone in the house like nothing is different, everything’s cool, just another fun day at home or school or wherever, and really trying to keep the tone in our household relaxed and positive and not let that bleed into our kids’—obviously it’s going to at some point—but not let it do it before it has to. The combination of knowing what’s going on, you can’t see, and yet balancing that with the fact that we have a hilarious, cute, funny, appearingly healthy kid running around playing tag with us with a tiara on her head and no clothes on—it’s this really strange dichotomy of this huge thing is happening to us and our family, and yet life is so real in this very moment, and we can’t see it right now.

So in terms of how did we cope with it, I think before that date was set, it was really hard to cope with it. I did spend a lot of time on the internet just trying to learn more, like, what is surgery like? What kind of things should we generally be thinking about in terms of planning logistics? How long does surgery generally take? How long will we be in Boston? What should we think about for hotels? Just trying to get my arms wrapped around that, because it was helpful for me—I’m a planner, so it’s helpful for me to think about that.

And then I think we really tried to line up times for us to completely check out and just let us not think. I mean, I think we watched more TV that week and that month than we’ve ever watched in our lives. Just chances to completely check out and say, “What’s going to happen is going to happen and it probably doesn’t help us a lot to worry obsessively about it at this exact moment.”

Allen: Yeah, the advice to people is to really find an outlet, whatever outlet that is that can help you deal with that anxiety. I’m positive we didn’t do it as best we could, but nobody ever does when you’re in a position of stress. I’m sure things that we could go backwards and look and say “Oh, during that anxious waiting period here’s what we should have done instead,” but I think the reality is people need to really focus on keeping themselves mentally healthy so you can be as stable as you can during the day for your kids.

Miranda: And the last thing I would add would be distraction. We made a point to go apple picking and do activities that would be distracting for all of us, because to try and maintain that sense of normalcy, even we needed a distraction during the day. It was certainly great for the kids to have something to do, so just trying to plan some super fun activities or sometime hanging out with other families where there’s enough going on that you really can’t focus on what’s happening right now.

 – Miranda and Allen, parents of Serena, age 2, ASD


At the one year mark she was growing, so it was like, “Okay, she’s growing and she’s not in heart failure. So let’s just let it ride and keep going.” And then we rented a hospital scale and we would weigh her every other day and send the weights to Dr. Breitbart and our family pediatrician, they were plotting her growth. As long as she was gaining half an ounce a day, we held off surgery. Then she was about to turn two and she had just had an echo and Dr. Breitbart said something about the echo bothered him. I sent Dr. Breitbart an email and I said “If this was in an ideal world, like if there wasn’t cost and travel and all that with no issue, would you like to see Elizabeth?” And he said “Yes.”

And I kind of figured, I’m an attorney, and it would be like me signing off on a case and never taking a deposition, or never actually meeting the client and doing an interview, or not having any testimony, just having documents in front of me. It’s really hard to make an assessment, and I’m not a doctor. We came up there and did a round of tests, and he took that test from when he saw her in person, and compared it with every single echo that Elizabeth had ever had to see if there was any change in the hole. Based on that determination, he could see that the hole wasn’t shrinking at all so he said “We need to just go ahead and do this.” So that’s when we made the appointment.

 – Anna, mother of Elizabeth, age 2, VSD


It was scary. They assured us that he was okay for the time being but he absolutely needed surgery. It was scary because we knew how serious it was, and we knew that our tiny little baby was preparing to go in for open heart surgery. He still wasn’t feeding well, I was trying to nurse and that wasn’t going very well. I was starting to pump, but I was so stressed that that was a struggle. It was a tough time.

During that two months before we went in, I remember we went to New Hampshire for a few days and just tried to have some family time. We have a family friend who’s a Catholic priest and we had him baptized prior to the surgery. We arranged with a photographer, we went into the studio and did some family pictures, the four of us. It was a scary time. Looking back now, as much as we didn’t want to think about it, we were preparing that, “Okay, I want him baptized in case he doesn’t make it. I want family pictures in case he doesn’t make it.” It was tough. It was scary. It wasn’t at all what we thought our first couple of months with a newborn baby was going to be.

 – Grace, mother of Austin, age 10, TOF