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