We brought her home from surgery and after her incision and the tube hole closed and she was able to start going to birthday parties and doing all that stuff, it’s just like she blossomed. It’s amazing. It’s almost like a rebirth if that makes sense. We sent Dr. Breitbart an email where she had started talking, she was in speech therapy and physical therapy for delays, developmental delays, we came home from surgery and it was like she wouldn’t stop talking. She would say words we didn’t even know she knew. She was speaking in like, paragraphs. And Dr. Breitbart was like “I don’t think we can credit that to the heart.”
But I think, and I’m not a doctor, but I think if you feel terrible, if you feel awful, you don’t want to learn new words and you don’t want to even try. But if you feel great, you’re like “Let’s go!” We saw such a huge difference, it was like a different child. And, her growth chart is kind of funny, because you can see she’s barely on the chart, barely on the chart, barely on the chart, and then after surgery it becomes like a vertical line. She was in like three to six months size clothing when she was a year old, and then after her surgery, now she’s wearing her size. She’s size three, and she’s going to be three.
– Anna, mother of Elizabeth, age 2, VSD
Those unexpecteds were really really hard. We thought we’d get home and it was the finish line. We didn’t realize that getting home was a whole new start, and in managing this new diagnosis. It was very difficult at first because the hospital and all of the medications she had to take orally were a real struggle. So getting home and having to give iron and her heart medication was awful. I wanted to come home and let her be a kid again. She would just spit and kick and didn’t want the medication. To see her at all uncomfortable at my hand was so horrible. I wanted her to not have to worry about all this stuff, but I knew that it was going to be a part of our lives. You know, within a week she was taking it like it was candy. I wish I could have fast forwarded seven days to see that, but those first few days were brutal. We were tired and emotionally exhausted.
– Jessica, mother of Avery, age 2, ASD
I was so stressed—I remember just like calling my dad and asking, “What do I do when they’re both crying? Which one do I pick?” And I mean I’m laughing at it now because until you have children you never really know just how you’re going to be or react. You’re going to be a lot more nervous with those than you are with your subsequent ones. But just freaking out about how to deal with this. My sister was working at a physical therapy place and I would beg for her to come over at lunch to give me a hug. She actually started babysitting while I went back to work, and then my mom would come up and watch them because the doctors said pre-school is completely out.
I don’t know what other families do when this situation happens. Fortunately, my mom was able to come and help, but not the first week, so it was just me and my husband that first week, and Lord have mercy. We were giving him a shot in the morning, medicine throughout the night, a shot in the evening, and then along with that, I’m still breast feeding the his twin at this point too. And then Brian was on a high calorie diet because the idea was to get him as fat as possible before the next surgery. So I had to mix my breast milk with some sort of mixture, and document how many CCs he was taking, just document everything that he was taking in. It was extra things after extra things to care for him. And waking him up in the middle of the night to make sure everything was okay—it was just a lot. We weren’t sleeping. It was new parents situation, putting mirrors under their noses to make sure they’re breathing, that stuff.
But once my sister started coming the following week and I went back to work, that was like a saving grace. I was like employee of the month. I remember getting in the car and I was like, “I forgot how to drive.” And I got to work and I never smiled so big. Just to be an adult again and brush your teeth at an appropriate hour…my hair was just—those things. But like I said, in time, everything got better and better. And you just got more used to the day-in and day-outs of everything.
– Lindsay, mother of Brian, age 2, Heterotaxy
Alice: It was basically Allan and I. We do have family that lived locally, but at that time we didn’t really know how to reach out and get help from other people. That was definitely a strategy we’ve had to learn over the last three years. So at first it was really just us.
Allan: We were also very worried about germs and everything else.
Alice: Yeah, we didn’t really go out, we stayed at home. So we didn’t have a lot of visitors. Even family members who wanted to come visit, they would have to fly or if they were around other people we just knew what getting a virus or common cold even at that age for him could lead to.
– Alice and Allan, parents of Zach, age 3, Single Ventricle
It was terrifying. I think I had mentally prepared myself to not take him home, and so the exact moment that I walked out of that hospital with him was extremely emotional, and the ride home was emotional. I was like, “Is he okay? Oh my gosh, what’s going on? Is he sleeping? Is he breathing?” The whole time you’re paranoid. It’s like being a first time parent, but a thousand times worse. Checking on him all the time and because you have nurses around you for that whole beginning, and then all of a sudden you’re on your own, it’s scary. You’re like, “Am I going to know if something bad happens?” The worst, biggest fear is when you’re in the hospital that you have all these nurses that know what to watch for, and if something went wrong, I trusted that they would notice it and deal with it. And then when you’re home, you don’t have that support, so it’s all on you to make sure your child is going to do okay. So it was terrifying.
He was still pretty sick, and his oxygen was still pretty low, and if he cried it would get even lower. He would turn very blue and it was a very scary thing, so we did everything we could to keep him from crying, which created a very spoiled child, but whatever. We definitely didn’t allow people to come over, we didn’t want anyone visiting other than immediate family. We were kind of ridiculous with the Purell and making sure no one was sick. But we also had him at the beginning of the cold and flu season, and I knew that if he got sick, it would be such a bad situation that we isolated ourselves. We lived in our little bubble for the winter, but it was fine. My kids at the time were not in school, so we just did lots of crafts and played games and all of that. As far as home stuff, not really anything changed. He ate out of a bottle and had diapers and all the normal stuff that babies have, except that I was super paranoid. Super paranoid. He slept in his crib right next to my bed, and every time he made a peep I’d have one eye open, so I didn’t sleep. So, super nervous. But we got through it and it was fine.
– Amanda, Mother of Carson, age 5, Heterotaxy
We were there for seven days and then we got discharged home. That was scary too, to come home. I remember walking down the sidewalk having left the main doors and I just broke down in tears and my husband turned around, he’s like, “Are you alright?” and I said, “It’s finally hit me. We’re leaving the hospital, she’s okay. It’s done for right now, we’ve been through the worst.” Because I was putting on my nursing hat, instead of my mom hat and trying to understand everything that they were telling me and understand the meds that she was on while she was in ICU and just the whole ordeal.
I have a notebook that I kept that I wrote down every single thing that went on, so that one day I could share it with her, and I did take pictures. Part of me didn’t want to take pictures, my husband thought that it was important to take pictures of her with all the tubes right after surgery, and he goes “One day she needs to know how strong she is, and what she’s endured, and to be able to see that.” So we have pictures that one day when she’s much older she’ll see and I can share the notebook that I kept with her of when she got extubated, when she had her chest tubes pulled, when her incision came off for the first time, just for her to understand how strong she is and resilient and what she’s been through.
So I had finally let down my wall and just let everything hit me. We took her home and we had a gazillion appointments, a follow-up at her pediatrician, going back up to see Dr. Lang. We were seen very frequently in the beginning and then we were graduated to a month out and then a couple months, and then our big one year appointment was great, and even though her surgeon had repaired most of the issues with her heart, there were still some that we needed to watch, and there was the potential for another open heart surgery, but at that point they were thinking that it was going to be quite a while out. We just followed up every six months and then a year from that first surgery up until now. And then she did recently have another open heart surgery, to repair some of the stenosis, some of the narrowing in her heart, her surgeon went back in and did a second open heart surgery on her.
– Roxanne, mother of Amelia, age 7, Dextrocardia
Because I was a C-section, I got to stay in longer than a normal birth. So we were there for part of her stay, and then we came home and she was there five days more. My mom had come and was staying with us, so at that point we would just come and visit her at night. You go in and you’re visiting your child, and the nurses had put her in a matching purple outfit, and you walk in and you see other nurses holding babies and doing paperwork, and so I think it’s the best of a complicated situation. I think the funniest is when we ended up bringing Alexandra home, and I think that’s when my oldest was like “Oh my goodness, there’s two babies?” There’s a really great picture. Because we came home with one, and then we got to bring Alexandra home.
The great thing is, if you have identical twins and one of them has surgery, you can always tell them apart. We just had to watch the wound and put a little bit of ointment on it. We were able to have a lactation consultant come to our house—we qualified because of her surgery—which was really, really nice, and so she came and she just really encouraged me to continue as long as I could because that would be the best for Alexandra’s heart. I believe one of the hospital’s helped us with that. I didn’t know about that before going in, and that was really helpful, especially—I wasn’t really getting out at that moment. It was crazy.
– Kate, mother of Alexandra, age 8, Heart Block & Pacemaker
After he had his Glenn, we felt he was more stable and felt better off, and we kind of made a decision in our own heads that we were going to go on with life as normal as possible, do all the things, go on all the vacations, bring him where we wanted to bring him. Because initially, people were like, “you’re gonna go to the water park with him? You’re gonna do this? You’re gonna do that?” And I thought, “you know what? We’ve been educated by the hospital, we can’t just live life in a bubble and stay home at all times.” We had the different equipment that we could take with us. Were we making phone calls? Yes. But at that time, we definitely felt like we were in a much better place with him. And we didn’t want him, or my daughter, to miss out on experiences of life. We knew that he would be restricted, physically—whether it means being on his back for a little bit longer after surgery to help him heal, this that and the other thing—and I knew that that would limit him as far as his development or in his ability to explore, so I felt like it was my job to put him in the stroller – “Hey, we’re gonna go somewhere else” – so sort of to get those experiences, because I knew he would be lacking in other experiences. So that was definitely something we had to decide and had a conversation about like, “hey, you know what, we can sit here, we can baby him, and be very overprotective—I mean we are overprotective with him in general—but we could treat him as a sickly child then he’s that kind of kid, we kind of felt that we were going to put that on him, so we decided lets have as normal as a life for him as we possibly can.” And if we have to back off on things, we do, but we felt if we didn’t try to do things with him or experience more things with him, we felt that it just wouldn’t be a good thing for him or our family.
– Abigail, mother of Johnny, age 9, HLHS
When he was 3 days old, he got a pulmonary artery band. He was sent home at 11 days old and then he was followed by our OBGYN and in Rhode Island. His oxygen wasn’t good, such that he had to go on oxygen 24 hours a day, and that was not anything that we had anticipated. It was difficult only because the other kids were so little and I had to lug an oxygen tank around with me for 6 months. I mean in the house, he had a long cannula and a giant tank in his bedroom. That was something we hadn’t known about.
I would say life with Gabriel at home was pretty consuming, he was born, went on the oxygen, his sats were so low, and in the midst of all that, we were actually moving to Boston because my husband was relocating his job. So not only was I packing up the house and nursing him—it was just, it was a lot. And then we moved to Boston and we had nobody around. My husband was traveling a lot, so it was kind of isolating, but because I was so busy with Gabriel and then the other two, it was just all consuming. It was stressful, but at the same time, we were so busy, and the other two kids, thank God, were good.I was summer and there was a new baby and I don’t think they really got the fact that there were issues or anything wrong with him the way an older child would. Life just kind of went on, and he had his second surgery that winter and fortunately, he was able to go off the oxygen which was great. He was almost 6 months—just starting to pull the cannula out of his nose, so that wouldn’t have been good.
– Louisa, mother of Gabriel, age 20, HLHS
We had no idea what the hell we were doing. We were scared to death and just tried to keep him as healthy as we could. It was nothing like now, where they have inter-stage clinics and they’re sending you home with an oximeter and a scale. We didn’t even have visiting nurses. We were completely on our own and it was really awful. That was a really frightening period of time, and a very lonely and isolated period of time because we didn’t want to take him anywhere because we were so afraid of him getting sick. So that was really hard. I don’t know if it was harder than getting through the pregnancy, but it was equally as hard, I would say.
We tried to go on with a normal life, still trying very hard to keep him healthy, but it was hard. And it was still very isolating. I don’t have family nearby, my family is wonderful and very supportive but they’re far away. And even if they were close, don’t know what people could have done concretely to help us. It was just trying to raise this baby with very little guidance. Things have changed so dramatically, there was no support services, now folks are referred to developmental clinics, and all kinds of things, and he had none of that. We just watched for the milestones and hoped they appeared on time to make sure developmentally he was on track. For the most part he was, which was pretty amazing.
– Diane, mother of Jake, age 21, HLHS