Focusing on what is most important
All parents want their children to be comfortable and to have the best life possible. How that looks is different for different families. Some families see the trach and vent as helpful, some do not.
You can listen to two different family experiences below.
Catherine: We try to stay focused on what’s most important for Vivian. We know her life will be shortened because of her heart condition. With every new medical challenge we face with Vivian, with every new thing that the doctors say they can try for her, we as her parents boil it down to this: will the treatment give Vivian more good time with us? Will she be able to read books and laugh and sleep in her princess bed at home? Or will the treatment just keep her in the hospital or always going to the doctor?
We knew home ventilation would help us bring Vivian home. And now we do whatever it takes to keep her here with us. The trach and vent don’t bother her much and we can give her experiences just like any other kid — playdoh and games and fireworks. At the end of the day, the quality of her life matters much more than how long she is alive. I don’t want Vivian to spend her days in a hospital bed.
If a trach and vent will make her happy and comfortable, then that’s the right decision to make. Send her home on oxygen? Okay. Place a feeding tube? Fine. Do whatever you must to get us home and keep us there. Vivian has a family that loves her, and I wanted her to be home to experience that. That’s our biggest desire, and with every bump in the road, we try to stay focused on that.
Matt: I knew that my job was to keep Ashley from being in pain, or scared. But when the doctor talked about ending the pregnancy, that was just not something we could do.
Morgan: When I learned that Ashley would be born with so many problems, feeding problems, breathing problems, she might have seizures or be blind… I was devastated. At the same time, I thought about my grandfather right before he died, on machines and in pain. I knew if my daughter could only be with us a short time, I did not want it to be like that.
Matt: We both wanted to believe that the doctors were wrong about Ashley. One of us would say, "Maybe the tests are wrong, maybe she will be fine." Then the other would say, “But look, all the tests say the same thing, they can’t all be wrong.” Truthfully, I always hoped for a miracle.
Morgan: We had to separate what we wanted, which of course was for Ashley to be with us forever. We had to separate what we wanted from what was right for her. Which was to feel safe and loved in our arms, not just hooked up to machines.
Matt: Ashley was born in December, and our families are big on holidays. We decided to do everything possible to bring Ashley home for Christmas. And we did! Everybody was there, everybody held her, she got so many presents! And then we had seven more holidays with her — New Year’s Eve, New Year’s Day, Martin Luther King Day, Valentine’s Day. We had a party for every single one of them… even Groundhog Day! We celebrated every minute.