Roller Coaster Ride

Whatever time you need to say goodbye.

Shh, Don’t Tell! stories are meant to be heard – in the person’s own voice – as well as for the original music. Please click above and listen, if you can! The transcript is also below.

Narrator: Bob knew becoming a dad would be a big change.

Bob: I was worried about bringing two boys home and trying to figure out how to feed them and maybe you know, put their clothes on right and do all that.

Narrator: But the woman carrying twin boys for Bob and his partner Grant delivered early. Way early.

Bob: We got a PhD in parenting that we never thought we’d get.

Narrator: In this Shh, Don’t Tell story…they had to prepare for one child to die.

Bob: We had been told before they came, in the two days we were waiting to see if she would have them or not, that it would be a roller coaster ride. And I really didn’t understand what that meant. And I didn’t really understand what they meant when they said you’d be your child’s best advocate, and the best person to sometimes make judgment calls as they’re in the NICU (neo-natal intensive care unit). And I said, well, how could that be because there’s doctors and nurses. And I really learned what that really meant because people don’t really talk about that.


Both the boys had heart murmurs, which means, you know, they essentially had holes in their heart. They both had hernias, jaundice. IVH, which is intraventricle hemorrhaging of the brain, uh, which is really scary. Wyatt had considerable more breathing problems than Parker did.

You know, you’d think they’re getting better than all of a sudden they’d crash. And then they would have the heart murmurs and the heart murmurs wouldn’t let them pump enough blood to have enough oxygen and all the different ways to possibly treat these different things. And you’d hear gurgling sounds and it would be their food coming up out of their stomach, back into the syringe and the nurses would come by and qwwick squeeze it back down in and just these weird things that you normally don’t have to go through as a parent.


The boys were actually really progressing well. They got off their main breathing things, the things that are over the face with the big tubes, to what’s called a cannula where they just put it in the nose. So we’re like, oh my God, we can see their faces for the first time. And so I went to the hospital and I got two beautiful pictures of the boys, especially one of Wyatt, because he was sitting there and he was all wrapped up and his little face wasn’t covered. It was just awesome. And that night, they called us and they said Wyatt has taken a turn for the worse. And I said, well, do I need to come in? And they said, no, not really. But we’re going to call the doctor and see what the doctor thinks? And they said he had to go back on the breathing thing, which isn’t unnormal.

We had been through so many ups where they regress, I actually honestly wasn’t that worried about it. Then the doctor called at two in the morning and said, hey, I really think you need to come in. So we came in and uh, Wyatt had really went down, his breathing went down and things were really going wrong and his belly was really got big. And so they did x-rays and the x-rays were awful.

It was almost like these big round circles inside of his tummy. It looked like it might be what’s called neck. And I don’t know how to say it’s necrotizing.. something something. But it’s essentially an issue with the intestines. And, we started going through a really sort of awful series of trying to figure out what was wrong with the baby. He stopped pooping and peeing and then they did an unblocking procedure where they go into the baby and they pull stuff out. And then he started peeing again and pooping. And then I was there really late and I went to bed in the room and I got up and one of the nurses, Julia, she goes, “Bob do you think his tummy’s a little red. I think it’s red.” And I said, “yeah, his tummy, I think it is redder.” So she goes, “I’m going to call the doctor.” And finally they decided that were going to have to do surgery. And this is where you start have to make decisions you never thought you’d have to make that are really some of the most profound and difficult decisions which destroy relationships and marriages and families.

They had said to us before they went in that if it’s a little piece, they’ll cut it out. If it’s a bigger piece and they’re going to end up with half their intestine, here’s what their life might be like. Are you prepared to have a child that has a bag outside of their body their whole life, as they’re growing up, as a kid? And surgeries greatly increase the risk of the kids getting cerebral palsy and all these other things that can happen.

Grant and I have never told anyone about what we would decide if certain levels of the intestine were not there. And it turns out when we sat down to discuss it, there was no daylight between us. We had both thought the exact same thing and no one should read into that good or bad, will we go to the mat to save the kid or would we not…any of that. We just, we were right at the same decision points, which was really lucky because a lot of parents are not. One parent may want to do everything they can and the other parent may feel completely differently.


They went in to do the surgery. The doctor said, so if I go in, I see something small I’ll just take care of it. if there’s something I feel like we need to talk about, I’ll come out, I’ll talk to you guys and I’ll re-scrub up and go in and you know, we’ll, depending on what we talk about, what you guys want. So you know, you have to be ready when the surgeries happened to, to, make a quick decision. And in our case the doctor was gone not even five minutes. He came in, and uh, in a way I’m happy about this, looking back on it we were very fortunate. He said that we didn’t have a choice, that there’s really nothing they could do to save him. And he said, you know, um, he’s comfortable, and you know, we can keep him alive for two, three days. We can probably keep him alive week if you want. Whatever time you need to say goodbye.


And so, he said, you know, I’ll, I’ll go sew him up and you guys just think about what you want and how you want think about how you want this to go.


One of the things that I’d realized was he had never been outside. He had always been in a hospital. They have a chapel at the hospital and outside this really nice area you could sit out by the chapel where it was a lot of flowers and benches and things. And they just closed all that off from the rest of the, you know, patrons of the hospital. I sat in a wheelchair and they actually had all the breathing equipment and they just brought it, brought us down, with Wyatt to, the chapel area. We went outside first and it was awesome. It was sunshine and uh, that’s actually where we had our family members say goodbye to him and uh, our friends, Tim and Elizabeth.

(Silence) Sorry., uh, when we were finally ready, everybody had left us. Grant and I, you know, we said our goodbyes to him, and when we, uh, decided that the moment had come, we, we told Susie, uh, the nurse to go ahead and take the breathing equipment off. And the great part was, is that, you know, he actually was breathing fresh air and he opened his eyes, which is great.

And uh, you could tell when he was starting to turn, like, you know, when they, they, they can’t breathe completely on their own and you can, you could just see it in his face. And so we picked him up and we brought him into the chapel. And at first we sat down in the first pew, and it just didn’t feel right and we actually just got down on the floor, Grant and I did. And, we just repeated over and over and we just, you know, told him that we loved him. And he, uh, he passed away in our arms.


Any parent that loses a kid, uh, you know, it profoundly changes your life.  I just never thought that losing a baby after such a short amount of time, intellectually I thought it wouldn’t affect me like it has, you know, it is a life changing in every way you can imagine experience.


It’s just unconsolable, unconsolable grief. And it comes in waves. We have awesome days and we laugh and you, you, you’re, you just go through it. But it’s inconsolable grief.

I was walking down Broadway maybe a week after he had passed away and it was, it was nice weather. And I just would try to do something to get myself to feel better. So I think I had to go to a banking errand and or something. I said, well, I’m going to go do this. I’m gonna go make this deposit or whatever it was, and I was walking along. It was a beautiful day and just as an example, I just burst into tears walking. Down the sidewalk by myself, kind of embarrassing. And my eyes were so watery that it was blurry. Everything was kind of like, like you’re looking through a window with rain on it, sort of distorted. And I saw blue and I couldn’t believe it out of nowhere, some police officers, you know, they all know me. I volunteer for the Portland police bureau and I have for 22 years now. And they had seen me from across the street and a bunch of them crossed over and they just gave me a big bear hug. They just literally surrounded me in the middle of the sidewalk and just held me while I just cried.


Special thanks to Baby Blues Connection for help with Shh, Don’t Tell! Stories, to Jenny Conlee of The Decemberists fame for our awesome theme and other music and to cellist Collin Oldham for his terrific compositions and scoring.