Table 3.

Results

Category	Theme	Example
1. Having Expectations	Entertaining Possible Outcomes	“It's alright, it wasn't something that we were expecting, but we knew…this could be the turnout before we came down here, and we were willing to take that option if it happens…I don't want to say we were prepared for it but…We knew that outcome could come and I think we were prepared for that…and I think right now we are at ease with the decision we made [to withdraw care].”
	Decisions They Can Live With	“There really was nothing else we could do.…It was what right now in 2008 what is medically possible…So I can't get mad or you know, fault somebody for…this medicine not being a complete cure. I knew pretty much the outcome of what it was going to be, and there's nobody, there's nobody at fault. We did what we had to do and we knew going down there this could happen, but I would much rather do that than us sit here and just watch it, and just see that something's not right and not do anything about it.”
	Speaking with Other Families	“It would be helpful for me…[to have] had somebody that's already been through it to sit down and talk to us. We would've felt so much better about everything, we would've known what to expect, it wouldn't have crept up on us. But, well we didn't have anybody…we didn't have anybody to hear from, so we just had to go with what we went with.”
2. Continuity of Care	Having a Personal Witness	“It kind of helps to know that sometimes somebody else had the same feelings as you– not as much had the same feelings as you but understands where you're coming from instead of talking to a total stranger who has no clue what you're talking about.”
	Provider Care	“We seem to be the only people that notice the changes. I think everybody else is so used to seeing her all the time and so used to sick babies that they really can't tell if this changed or that changed. I think probably the best way to improve that is to have the same nurse follow the same kid, or the same couple of nurses follow the same kid.…We've gone through [almost] every nurse on the ward and because we're swapping out, that redness that's there today, you know it could've been there yesterday, so they don't bring it up.”
3. Memory Making	Remembering Time Spent Together	“We decided, look, let's…make her comfortable…We've done all we can possibly, you know we did everything we could by the book…Everything we could medically…and if nobody in the state…can fix Ally, she's a fighter, you know just let her be…We did all we could.”
	Physical Memory Making	“The Child Life people came in and made some really neat like cast things like um like a, stone thing I don't know what it is like a molding of his hands…So I could have handprints and footprints and that kind of thing. So I would be able to have his memory.”
4. Wide Network of Support	Support from Strangers	“We had one [memorial event] at the house, where we had almost 500 balloons, and can you imagine that?…And we had almost 25, 30 people just at my house letting them all off. And you know that really means a lot…We even had people show up that I didn't know who they were…Just for them to take out, ten, fifteen minutes and go pick out a pink balloon and take a picture of…letting it go in the air…They didn't have to do that…But that fifteen minutes that they did that it wasn't about them, it wasn't about…me, it was about her and that's what I like…If people can go out of their way like that…it makes me feel better.”
	Affirmation of Their Strength and Decisions Made	“It is a very tragic thing but we're very content with the decisions that we made.…We're confronting a lot of people…that came to us, you know what, ya'll are damn strong for doing what you did, you know you're great parents…I've had people come up to me and say…you're one hell of a man for doing what you did. And it means a lot because…getting this from grown people…It's very heartwarming knowing that if I can go through this…I'm going to be ok the rest of my life.”
5. Altruism	Helping Others Through Their Experience	“We were definitely more than happy to do it any way to help out…When Logan passed…They um, offered to do an autopsy so maybe we did it for more to get answers for ourselves but you know what…they said it could help other kids you know that could be in similar situations…and they…asked if we'd like to donate his brain for research…that was a hard decision to make…but if it's going to help you know one person out then you know we want to help in any way we can.”
	Passing on Personal Items	“Every single toy that I had brand new in the box, which was probably half of her toys, I gave to the Happy Place…I told them, don't just give it to [anyone]; give it to a kid that needs it. Give it to a kid that wants to play with this. She never got to play with it, but, give it to a kid that wants to play with it…that's gonna cherish it.”