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