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

Preparing for surgery as a parent

As we got closer to the surgery the Child Life Specialist was incredibly important. Within a month or two of the surgery, I was really able to ask the questions that you don’t ask a surgeon, but you could ask a staff person. Like, “Can I sleep there? Can we both sleep there? What does the bed look like? Is it a crib? Should we bring in this?” It makes you feel like you’re in a little bit of control, so you can pack accordingly, you can feel prepared. As a parent, if you have that little peace of mind it helps. So the Child Life Specialist was incredibly, incredibly helpful to me and my husband in that way.

We also went for a tour of the ICU, I wasn’t sure if I was going—if that would help me or not, but the doctors suggested it. I was thinking “Oh no, what if it makes it worse?” It was hard, it was an incredibly emotional day, but I’m so glad I did it. Strangely, one of the nurses I saw and talked to that day on the tour, I saw the morning when I was bringing in Avery for her surgery. And she said, “Is today the day?” She remembered our faces. And I said “Yup,” and started to tear up and she said, “She’ll do great, we’ll see you upstairs.” Just saying that makes me cry now. That friendly face, that feeling like it wasn’t a brand new space helped. And for the first time you see a kid hooked up to tubes and wires to be your own kid, that’s really hard. To see your child that way is hard enough, but to see it for the first time with it your own child, that’s asking more of yourself than you need to.

 – Jessica, mother of Avery, age 2, ASD


Allen: I would say the hardest part for Serena was just the restriction of tests like, “Sit in this chair for half an hour or try and sit in Mom or Dad’s lap.” From an emotional standpoint, I think she was just mad that she couldn’t be playing.

Miranda: Yeah. I felt like the pre-op day was really hard.

Allen: Yes, it was a long day for her, and it didn’t work well with naps.

Miranda: That’s where, emotionally, it got a little charged for all of us, because we’ve come up to Boston, this whole thing is happening now, and  it’s becoming very real. She was interested for a while, when she was just watching TV and waiting for it to be her turn, fine, they do the height-weight, cool, we’re good. Then you keep going back to the same room and they take you somewhere else and some test happens and it hurts, and you go back to this room and they take you somewhere else and another test happens and it hurts, and then you go back to this room. And they pick up on that pattern. And the more upset she gets with these different tests that are happening, the more the anxiety builds for the two of us. We’re watching her have to go through this—and it’s fine, she’s getting her blood drawn, it’s not like she’s hurt, but you’re watching your kid in distress, and you’re also like, “Yeah, but this is just minor stuff. What’s it going to be like tomorrow?”

So my anxiety grew that day as it was becoming more and more imminent, and she was becoming aware of this pattern. That was really hard for me—just trying to figure out how to be strong for her and not let her see my anxiety, and how to try to break the cycle a little bit. One thing that they had offered us to do and we did not take them up on it because we just wanted to get out of there fast so that she could take a nap—was they did say that you could take a break during that day and just go outside or go to a completely different place. I think had we not been really focused on that nap, that would have been a good thing to do. With older kids or something like that, just saying “I need a break for an hour. Our family just needs to re-set,” so that you can break that cycle of anxiety.

Allen: It was a long day, it was hard for all of us. I’m not sure there’s much you can do about that. For a 22 month old, we came with our bag of tricks, but that’s good for a couple hours, we’re talking like eight—it was like eight to one. That’s just a really hard day.

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


The challenge with Carson is because of the heterotaxy diagnosis and his rare diagnosis, there’s no protocols to it. There’s a lot of research that has to be done, and Boston has grown so much with children with heterotaxy, just since we’ve been there for the last almost five years. Even when we were there five years ago, when I was pregnant with him, there was still little known about how the syndrome affects your entire organ system, and the statistics of kids with it are awful, and so I spent a lot of time researching and trying to educate myself as much as I could about kind of what to expect and making sure that I was a good advocate for him, and that I was aware and kind of prepared for what may happen. Like, what would he look like when he came out of surgery? I would look at photographs online of other children. And what are the terms? So that I could understand what the doctors were talking about when they said what his pressures were. Things like that. I wanted to educate myself as much as possible, it’s definitely a hard balance.

To be honest, everybody deals with things differently, my husband’s way of dealing with it was to know what he absolutely had to know and that was about it. He was our positive power in the house, he was optimistic, he was “Let’s not over read or over research, we’re just going to get ourselves worked up, we have no control, let’s just focus on all of the happy things and enjoy the moment and don’t get upset about all the other things that you don’t know about.” Where I was almost the opposite, like “I want to be prepared, I want to know everything so that I can make sure that we’re advocating and we’re doing and understanding all of it.” Honestly, I think it was a great balance, I think we both kind of took the other role and supported each other and it worked out really well.

But when we had gone for our tour of the ICU, I had seen children that had come out of surgery online, and I had had that breakdown moment in my own private time, because you can’t imagine what that looks like until you actually see it. It’s very upsetting to see a baby hooked up to the monitors and tubes and blood and tape. So, I had seen that in my own home, by myself, and was able to cry and have that “Oh my God” moment alone. But when we had gone for the tour, my husband didn’t want to see any of that stuff online. So he experienced that for the first time in front of a group of people. In front of the parents of this poor baby who we were looking in on, and the social worker that was walking in with us. It was very overwhelming for him. He was blind-sided and got so very anxious about it and had to leave. In that situation, I felt glad that I had had that moment on my own time—I knew what to expect already.

 – Amanda, Mother of Carson, age 5, Heterotaxy


When I was pregnant with twins and going through the Lamaze classes at Brigham and Women’s, they used to say to us, “Go to the nurseries and look for the tiniest babies you can, because you’re liable to have two very small babies because there’s two of them, and that’s something you should get used to seeing.” Of course ours were 6-12 and 7-2, and you know completely gigantic boys, but we used to go looking for these little tiny babies, two pounds, three pounds, they’d show them to us. And I’m wondering if maybe when I was already in the hospital waiting for David to be born if I had been allowed to see some of the babies who had had a surgery and were doing well, that might have helped me. But I don’t know if they would have let me do that. Plus you never really know what you’re going to see when you walk into one of those wards, you just don’t know what you’re dealing with.

 – Courtney, mother of David, age 23, TOF

Preparing my child for surgery

We talked to the psychologist about is how do we prepare her. And she said “You really can’t. You can get her a doctor’s kit” which we did, so you know, she saw stethoscopes and she saw this that and the other, “you know, let her play with those things.” But she had said “The majority of the processing she’s going to do is going to be after the procedure. And so that’s great to have doctor’s kits around, but she’s going to work through it in her own way. You can’t really shape that for her. And what might stand out in your mind may not even resonate with her. For a two year old, the most horrible and frustrating thing could be that sticky tape on her skin. It might not be the open heart surgery. It could be (and it was) that board they have on her elbow for the IV.” It drove her up the wall, but lying in a hospital bed with all the tubes and wires, that wasn’t a big deal.

Talking to that psychologist was really important for me because as her mom, it was hard for me to separate what I was feeling versus what she was feeling. And that psychologist reminded me of a lot of important things. She said, “This experience is a lot different for her than it is for you. You have the ability to control it in the sense that-you know, she’s going to get from it mostly what you give her. So if you’re crying and hysterical and panicked, she’s going to get that and she’s going to feel the same. Like when a kid falls on the ground, your reaction cues them what to do a lot of the time. But this has such a deep emotional meaning for you because your brain can function that way. You can think of terrible things and her brain doesn’t work that way. For her, it’s going to be-if you’re with her, by her bedside, that’s good. Home is where mom and dad are. Home is where you bring her blankets, you bring some comforts of home, you create that space. For a two year old, it’s very different than it is for a three year old, a four year old, a five year old.”

She helped us understand that, sure, it would be an unpleasant four or five days, but for her that’s it. We couldn’t really prepare her for it and say, “This is what’s going to happen” because her brain couldn’t really understand all of that. Our dog happened to have surgery around her diagnosis, so she was very aware of “boos”, and so we took that as an example of saying, “she went to the doctor and now her ‘boo’ is all better!” We have three dogs and we used those as teaching examples and to try to not make doctors scary. But it was going to be an unpleasant experience. It was going to be scary at times. The best we could do for her was to be strong. For me, the months leading up to it I took to get myself as strong as I possibly could by all means necessary so I could be that strength for her. So that when they’re putting in a new IV line and she’s crying and wants out, that I’m that smiling comforting face at the edge of her bed, not wincing and sad, that I’m there for her knowing that it’s okay.

 – Jessica, mother of Avery, age 2, ASD


For Serena we didn’t really talk to her that much. I mean, both of us really believe in telling our kids what’s happening, whether they can understand us or not, and so we did tell Serena two days before or something like that, like “You have a hole in your heart, we’re going up to Boston, the doctors are going to help you fix it.” That night we said, “Tomorrow you’re getting your hole fixed,” and then when she woke up from surgery and you know, one of the first things I said to her when she and I had time alone, I was like “Serena, you did a great job, you went through surgery, and your hole is fixed!” And you know, she was 22 months when that happened, I have no idea if she understood or not, but I just like to think that somewhere it’s registering.

 – Miranda, mother of Serena, age 2, ASD


I know you can have a child life specialist person come and meet with your other kids. One of our friends was a child life specialist, and she actually would come and visit. She could tell Alexandra was a little anxious in the hospital, so she goes, “Oh look, have you ever seen the playground?” So she took her and she got to see the playground. So there’s these other services that you may not think—like the first thought is, “Do I have a good doctor?” But at some point there’s also these other great things that are going on—don’t hesitate to avail yourself to.

 – Kate, mother of Alexandra, age 8, Heart Block & Pacemaker


My son had already had a minor surgery on a lymph node on his neck a couple years before so we honestly had him help her to understand it. When we told her she was going to need the surgery, he was with us and we told him his job was to explain what it was like when you’re coming out of anesthesia and kind of what the next 24 hours might be like. Of course what he had was completely different from what she was going to have, but even the falling asleep part you know when they give you the IV, because he had just done great with his surgery and wasn’t afraid and we knew that if she heard it from her older brother that would help her to understand.

When she went into the hospital I’m sure she was anxious, I know she was, but she didn’t really express a fear or anything else. A couple of days before that we had gone in for all her checks and she was in great spirits. But the day of, when they started giving her the IV to help make her sleepy, it didn’t take and I think at that point she was wound up enough—now she’s laying in the bed, she has the needle in her arm, she has all these people looking at her and coming in and out and beeping machines and all that. So they increased her dose of whatever it is that they give you three times until they came in and said “For her size and weight, we can’t give her any more, it’s not going to be safe at this point.” And she was still talking.

So that was hard because they had to wheel her away from us still awake. We really wanted her to be with us when she fell asleep, so we kept trying to put on nice music, tell her stories, I was singing to her, trying to get her to calm down and fall asleep but she wasn’t having any of it, so they did have to wheel her into the OR wide awake. That’s the part that bothers me more than anything else because I know once she got into the OR it was probably quite frightening. But generally you don’t remember that once you wake up. I’ve been in that situation before and they put you to sleep so quickly and they give you whatever that is, it almost causes amnesia.

 – Dana, mother of Raegan, age 11, Cardiomyopathy with a Pacemaker

Preparing other children for a sibling’s surgery

Allen: The book we made about Serena’s surgery was really was our primary vehicle for communicating with Mallory, our older daughter. She loves books, they’re a very useful vehicle to explain information to her, and seeing that the book was about her really piqued her interest. It gave us a chance to focus on telling the story in a way that was palatable to a four year old, and a way that was very focused on her as opposed to Serena, our younger daughter. If the book was “Serena this” and “Serena that,” it probably would have been okay, but putting it from the perspective of Mallory I think helped her think about how this is going to affect her and her life.

We made a point to make it not scary, and focus on the positive things, “Oh, you get to spend this time with Grammy and Grampy, then you’ll get to come up to Boston and stay in a hotel for a night.” We crafted it around how can we put this in the most positive light that we can? We told her about “an operation coming-” using “operation” instead of “surgery,” operation is a less scary word, and we made the book so she could color it.

We shared the book with all the adults in her life, so at her preschool all of the teachers got to read the book, so they knew how we were communicating with Mallory, so that it would be consistent. I think doing all of those things really helped prepare Mallory in a way that was just crafted very carefully so that she wasn’t going to be over anxious about it. She’s already going to be anxious enough with us leaving the house, so we really wanted to mellow it out.

Miranda: The other thing that worked really well is that it gave us time to think about how we wanted to talk about it with her, and it helped us figure out things like, what words do we want to use? What do we want to emphasize? The adults we gave it to said, “Thank you, because we want to talk about it like you’re talking about it. This gives us all exactly the same language.” And we said, “Could you please follow this script? Please don’t deviate from this script.” And they all appreciated that, because at the end of the day, they want to help, and they want to do everything that’s going to help, and what’s going to give a four year old the greatest comfort is if everyone’s saying the same thing.

And the other thing was that she could follow along in the book like when she got to Boston, she knew “That’s where we are in the book!” And when we got home from Boston, she was like “Okay, can we have our ice cream sundaes now?” Because we promised her we would get a big family ice cream sundae when we got home and everyone was happy and healthy. And then at the very end of the book, I said “Okay Mallory, the book is finished” and I think that was good closure for her. That she doesn’t have to think about that book happening anymore, that the book is done, it’s closed. So that was pretty much the only way we talked to her about it. She had lots of questions and we answered those questions, but that was really our primary vehicle.

Allen: The book was helpful for us too.

Miranda: And even the nursery school teachers said “I feel better having read this book!”

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