Phil: 0:04

Welcome to Take Your Medicine podcast. I am Phil Cowley. I was a pharmacist for 25 years, and I realized that the people who are the smartest are the patients that have gone through everything. As a pharmacist, I always thought I could tell people things they needed to know. And I realized what you really should be doing is asking people. What they know, and you can learn so much more today. We have a very special guest. She actually lives here in the same city as I do right here in Cache Valley. Her name's Bre Miller and Bre tell the people where they can find your story.

Bre: 0:35

Yeah. So you can find me on Instagram. Um, just@bremill. And then we have a YouTube channel that kind of goes more into depth into our family's lives, and especially, my little boy, which we'll talk about more, but that's just at YouTube. It's, um, Meet the Millers.

Phil: 0:52

So fantastic. Okay, so we're gonna jump right in the story, and as we go along, we'll get to know you so much. So, tell me, how long ago was it that Jensen was born?

Bre: 1:01

He's six years old, so, obviously it was six years ago, but he was born with a congenital birth defect that we didn't know about until he was born.

Phil: 1:11

So you, you went through the whole prenatal care stuff. You got all the pictures done. You hear the heartbeat, everything is fantastic, right?

Bre: 1:18

Yep.

Phil: 1:19

And then he comes. So you get, you get, you go into labor. This is child number five. So this is like a water slide effect of this, but you're like, I don't want to get up in the middle of the night. You know what you're in for. Right?

Bre: 1:34

Yes. Yes. Well, so we thought right.

Phil: 1:36

Did the birth and everything go good while you were going through?

Bre: 1:38

Oh, great. So great. That's good. That's easy. Yep, and then he was born and they put him up on my chest. I remember thinking, he looks kind of purple. Like he just, his skin coloring was really weird. And then, um, they were like, yeah, let's try to get him to cry. And then it was shortly after that, that we we're like, okay, something's going on here.

Phil: 2:00

You know, a lot of people have gone through that, that time when they've had kids and you come out and it's always as a father, it's different because you don't have as much adrenaline and that you just want to hear that baby cry. You're not so worried about the fact that you're bleeding from every place. And, you know, it's, it's a little different one. As a mother though, you're sitting there and you just went through the labor and you're tired and they take, and they put the baby on your chest and they're getting y'all done up. How fast did you think that you realized there was something really wrong there?

Bre: 2:28

Um, definitely it was a quick, it was a quick realization because they took him back, he wasn't breathing, they put him on a CPAP, he still kind of wasn't breathing, and then they keep telling you, they kind of string you along. Um, just to keep you calm, you know, like, Oh, we're gonna take him back and give him some oxygen for a minute. He'll be right back to you in just a minute. So, you know, you just try to stay calm and then, oh, it's taking a little bit longer. It'll just be a few more minutes. And then it's kind of like, what I'm realizing is, they're not worrying the mom while they're getting all their thoughts sorted out. And then they came to me, I guess, with maybe, like, the, the bomb, like, something's wrong. He needs to be life flighted to Primaries. And that's when the doctor and everybody comes in. Once maybe they had all of the information about what they thought was going on.

Phil: 3:18

Right. Well, and I think that they try to do that. I mean, they're trying to be very sensitive and they're, I'm sure they're trying to figure it out too, because it's, they don't have any imaging. They know that the baby's struggling at this point.

Bre: 3:29

Yep.

Phil: 3:30

But as a mom, there has to be no way that you're not just climbing out of that bed. Like you're just wanting to go grab your baby.

Bre: 3:36

Definitely. And I think, I mean, luckily I didn't have a C section, but I know moms experience this that have C sections. I mean, I was just like, okay, he's leaving. I'm leaving, you know, like, and then it's weird because you're healing. You just had a baby. And I remember the night we were at Primaries after, um, the next day and I was just telling my husband, like, my back is hurting so bad. I don't know what's wrong. And he's like, well, you just had a baby. And it was almost like, I forgot that that happened. Because the only thing I was thinking about was what's going on with our little boy.

Phil: 4:09

Yeah, absolutely. I don't, I mean, a lot of people watch Game of Thrones and there's a scene where Princess Rhaenyra is like, has the baby and has to take it up the queen and she walks up the stairs. And it's funny because anybody who's met a mother They just like forget for a minute. Like they forget that they're bleeding. They forget that they've got crisis. They forget that they need to eat. One of those things you see with a lot of mothers, like when they go into crisis mode, whatever the crisis may be, you have to kind of remind the mothers. They have to take care of themselves. Mm hmm. Mm hmm. Because I'm guessing you didn't eat, you didn't sleep.

Bre: 4:46

No. No, I forgot to pump, and then I know I'm going to have this baby that I'm going to have to feed. There was a lot of things. You definitely just, you forget a lot, which seems like you wouldn't. But you definitely do.

Phil: 4:57

I mean, dads do it too, but it's just a really there's that thing that mothers do and it's just they need to be right there so they don't move and watch the baby through the window or through the incubator for hours and hours and hours and hours And it's just one of those things that I, I often, you know, as a pharmacist, when you have a mom that's going through a crisis, it's, it's so important you tell that mom, you're going to crash sooner or later, your body will give up on you. Did you ever find a point you're like, I got to go, I got to go sleep. I got to go like. Did you hit that point?

Bre: 5:28

Um, I mean, I think I did, but I think it was honestly like years later, because we were living in crisis for probably like two years. And then I think at that point, then it's like, you know, you think you're doing so good. It's been a long time since you've been dealing with all of this. And then both my husband and I realized like, you know, our mental health has taken a hit. And it was like, as soon as he started doing better, then we weren't in this fight or flight anymore. It was, it was like then that we realized we had some healing to do. And I wouldn't say it was as much. physical healing as emotional healing. There was definitely a lot of trauma to be healed from at that point.

Phil: 6:11

Well, your whole world kind of gets rocked. I mean, I mean, you already have kids, but the thing that everybody who has children know is each child, like now owns part of your soul. Like there's just nothing you can do. And you know, we're going to get back. I want to get to what, what Jensen had and everything like that. But I think it's just one of those things that universally hearing your story. And I watched it, you've got this cute video that you're telling your kids what's wrong. Um, and they're, they're coming in, you're stuck there. Your husband's already on that helicopter. He's on the way out and you're, you're other four little kids come in and they're, they're little kids. They, they have zero comprehension of like, seriously, three quarters the words that you have to say, you're trying your best. And you're trying to do it just the softest sweetest voice and you can hear the crack underneath your voice. Like you just want to cry. You can just hear it inside of you. Yeah. But they were only concerned about one thing. You told them one thing. Do you remember in the video? The one thing, the only thing that they really even cared about.

Bre: 7:06

Yeah, this, that video is actually like one of the most, like, beautiful things I, we have recorded because of what you're describing. My kids only cared to know if it was a boy or girl. We didn't find out the gender of, like, the last half of our kids. We just wanted it to be a surprise. And we were so caught up in like, That the baby's help at that point that we had forgotten that we hadn't told our kids if the baby was a boy or a girl. And that was kind of when they found out what was happening and they were just over the moon. They were so happy to have a baby brother. And especially my son was so happy. And it kind of also was like really special because then you see how kids innocence is so pure and their hearts are so pure and their love is so pure, you know, that they didn't, they just were so happy that it was a boy.

Phil: 7:53

Well, it's funny, too, because it's not so much funny, but it's an interesting thing you find. A lot of times, you, as a person, whether you're going through the crisis with your own healthcare, or it's your one of your children, you start to become your diagnosis. You start to become the procedures you're in. And, and there's no way, as a parent, when your kid's going through things, you don't start thinking, okay, so we've got to fix the trachea, and then we've got to fix this, but then the stomach's not, and you forget. There's a soul inside of there a little bit. You become a list of to do's whether, you know, when you're going through cancer, okay, I've got to get the lumpectomy done. And then we're going to go ahead and do chemo three rounds. And you forget that inside there, there's a person too, because you let yourself get caught up in that whole moment and you start thinking like a healthcare provider.

Bre: 8:39

Yeah. Oh yeah, definitely.

Phil: 8:41

And so I love the fact that the kids were looking at it. And I think at that moment, it was kind of funny because you take this solid pause, like you're getting ready to explain. You probably had all these answers ready, like you were just ready, and you took this solid pause, and you hear this, like, almost relaxing in your voice when you're able to tell him it's, it's your little brother. It's almost like at that moment they woke something up back inside of you, like, I don't know, it was a very, very good moment.

Bre: 9:09

Yeah, it was, it was really special. And I think in a weird way, like, that has described my kid's relationship with each other and caringness towards him. Since he's been born, it almost I don't know. It almost made the whole thing It was a reality check for all of us, I guess

Phil: 9:30

It's funny how like kids they go through all the stages So I think everything we do we go through the stages of grief when you talk about just being in survival mode that a lot of that has to do with not necessarily accepting everything but trying to still fix it. You're doing a lot of bargaining There's some anger inside there, but kids it's funny because you tell them that the little brother's there and that he has things They're like, okay, great. We've got a little brother done accepted. Whatever this brings. We're accepted to it. That's just the way that Jensen is he's just that's him like they don't yeah It's so cool to see that acceptance and how fast that almost brings peace into a family When somebody hits that acceptance so quickly.

Bre: 10:07

Yeah, definitely. It, it set the tone and it was, they were so excited and so sweet. And it was, it was something that my heart needed in that moment, for sure.

Phil: 10:17

It was just great. It was such a great moment. I've watched it a bunch of times because you seriously take a pause and almost find the humor in your panic. Because you do this little laugh, like, oh yeah. It's, it's, it's just, it's just their brother and then it looked like something that may have changed a lot of tone from that movement forward because it just bring such a peace there.

Bre: 10:39

Yeah, definitely.

Phil: 10:41

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Bre: 12:41

Yeah, probably, I mean, it, he had been up in the NICU while they were sorting things out for at least an hour, so I'm guessing he was probably life flighted within two or three hours after he was born.

Phil: 12:55

The only time you'd seen him so far was sitting on your chest turning purple. Yes. Yes. So you're like literally climbing out of the bed. Yes. Screw this. I'm on my way. Like, it's all right. If you don't let me get on the airplane, it's a two hour drive. I'll be there before you guys even land. Yes. Yes. So how did they convince you to stick around? Cause obviously they just stick for stick around for probably a day is my guess. I am not a day, but I did stay the night he was born in the afternoon. I stayed the night at the hospital because once my husband he was, they let him go on the life flight, which was, is rare, but because of waiting issues, since he was such a small baby, I guess they still had room for him to be able to go. For him to get on.

Bre: 13:37

Yeah. So he went down with him, and then once they were at Primaries and got more information about what was going on, and we knew, like, he was, you know, stable enough that they weren't going to do surgeries and things like that until the next day. He just said, I think you should stay. There's nothing you're going to be able to do. So I stayed at the hospital that one night and left like at seven o'clock the next morning and went straight to Primaries.

Phil: 14:04

Do that's kind of amazing. Cause there's no way that you slept that night.

Bre: 14:08

No, no, but I mean, I can't imagine like if, if it would have been more emergent, I would have left earlier. And that's what the situation that a lot of moms are facing. And like I said, like you could be having a C section and being like, I gotta go be with my baby. Cause I don't know if they're going to make it, you know?

Phil: 14:24

Right. Well, I've got it. Well, that's the thing. And then there's some moms that have to stay forever. And then they're, I mean, everybody's phones dead. Yep. You're getting texts. about nothing because you have to have a text. Like, it's been five minutes. You're like, okay, tell me something. You have to tell me something. And your husband, and I mean, where you'd had four healthy children, the process had to feel just so foreign in every single way.

Bre: 14:48

Yeah, definitely. But I think the one thing that we really lucked out, and some people may not like this, but we had a doctor that was brand new, just had finished her residency. And so she, was just, so I think that would maybe make some people nervous, right? Like that she maybe they would think she had less experience, but that was a huge advantage for us because she was on like the cutting edge of everything when it comes to surgery, surgery for newborns, though, she was so confident and just, eased my husband's fears, like right from the beginning, so he was able to do that for me. So she was fantastic. And I know that some people don't necessarily always, that's kind of just luck of the draw, right? The type of doctor that you get and their bedside manner and all that, but she just was so great. And she told us from the beginning, this isn't going to be a one and done type of surgery. So. All this, we have, do you care if I just say what was going on with him, what we found out? No, say everything.

Phil: 15:51

No, I want you to tell everything. It's kind of your story, I just kind of lead into it. One thing I always like talking about, though, is the journey itself. So this is like, perfect. Because the idea, the confidence is one of those things that I really love. Because it's one thing I always tell my kids, if you're going to do something, do it with confidence. Yeah. Because it doesn't do any good to do something, And have a lot of self doubt. So just full send on anything in life and it will turn out better than if you like slowly ease your way into it. So I love the idea. You have this doctor. It's like, hey, this is where we're at. We're just going to get it done. So the baby's down there, you're really not quite sure what's going on. You know, they're not breathing well. So what are the, where, where did we start with trying to help Jensen?

Bre: 16:31

Yeah, so when we had, when we left Logan, our, our, um, pediatrician did have, he was like, I think his esophagus is not connected. That's what I'm guessing is going on. So then he's life flighted to Primaries and sure enough, his esophagus just ended right here in a little pouch. It just was closed off so he couldn't swallow any spit. which is kind of why he was having such a hard time breathing at the beginning, right? Because you just have all this fluid. And then the other part of his esophagus that was growing up from his stomach. So it's almost like he had two esophaguses, right? But they, and they're supposed to be one and be connected. So this one ended right here. And this one coming up from his stomach grew into his trachea or his airway. So he kind of had two issues. Right from the beginning. He couldn't breathe well, and he couldn't ever eat, right? Because he didn't have the connection.

Phil: 17:22

Well, and your lungs have got to be at a huge risk for infection. I don't have anything in my stomach that I want in my lungs. So

Bre: 17:30

Yes, and they're connected, right? So yeah that and as soon as he was born then they're supposed to be separated so that was definitely an issue and he did have like some little spots of pneumonia when he was born because of that. But our surgeon like I said, she's brand new. She's really fantastic. So she was able to do a surgery on him that had only been done like three times at Primaries and Usually when they do this repair on kids It's pretty invasive because you can't know where the, because they're not connected, like the two esophagus parts aren't connected, you can't know where the other part is because it's a soft tissue which doesn't show up on like, scans. So, they basically just have to cut them open, they fillet them by the side, and then they have to just find out. So you don't even know how bad your child's defect is. them

Phil: 18:22

She goes in blind too though, because she can get in there like, Okay, we got And then once you're in, you're in, like,

Bre: 18:27

totally, totally. But she luckily had just finished up learning about this new technique where they could do it. Lathroscopically. So she said, if I find out that it's worse than I think when I'm doing lathroscopic, then we will have to like open him up. But they were able to do his whole surgery lathroscopically. So only had three little incisions on his chest and side. So that was amazing. So amazing. But it was more serious in the recovery. So the five days following the surgery, where they connect the two parts, so they, they disconnect the part from the trachea and then they connect the two esophagus together. So now he has a full esophagus and he has, Um, uh, airway that's usable now, right? Without any holes. Um, but then they have, they cannot be moved for five days. And if they are moved and disconnect that at all, you just lose them.

Phil: 19:22

Any jiggle, I'll put it right. Yes. Like you're almost got him tied to the bed so he can't wiggle.

Bre: 19:26

Yes. They're like, they have him paralyzed. Uh, Like through medications, right? So that they can't move and they have all these special rules like written above their bed, like that, like how you can move them, right? But it's still because it had only been done three times at that hospital. I was like, does everybody understand how serious this is? And we would have to remind people like, Oh, you can't move his head like that because they still have to come in and suction them and we have to change diapers and stuff like that, you know, and they have to do x ray.

Phil: 19:57

Cause honestly, what I know from you, you're just a sweetheart. Like the last thing in the world you'd want is to have anybody. Dislike you like you probably go walk an extra mile out of your way of somebody it like it just seems like you just really did you get to a point where you're like, nah, I'm a mama bear on this. You're gonna do it. But like, did you quit cutting corners and just say stop it? And just get after it?

Bre: 20:17

I mean, I think I definitely ruffled a few feathers with him. And I mean, it's in the hospital, they probably thought I was annoying initially, because I We asked so many questions, so, so many questions about everything they were doing, and we wanted to do it all. I wanted to take care of him. If they were changing his diaper or doing anything, like, I wanted to do it. So we were very involved in everything that was happening. But later on, because his health issues continued, you know, we'd go to the hospital here, and I would be like, If you ask me how to spell what is wrong with him, then I know you can't take care of him. And it wasn't, it's not because I think that the hospital here is not good, but it's not a children's hospital that specializes in this pretty rare birth defect, right?

Phil: 21:06

Right. And you know, your kid, like, this is one thing that comes up in this podcast all the time. You become an expert in a way that nobody else does because you, the surgeon tells you certain things. And then the surgeon's like, okay, now, now the trachea is going to be super weak. He's always going to have a little bit of problem breathing over time. It'll get better. And so, you know, all this stuff from the surgeon, but then they hand you off to a specialist after the surgeon, which is often different. And they tell you other things. And so now you can go back to the surgeon and say, when you told us this, it was right, but they now are doing it this, like, it's amazing how smart people get, whereas, you know, somebody in the ER that sees, I don't know, 6,500 RSV cases and zero cases like your boy. You shouldn't expect them to know more than what totally more time in it than they have. So I love the words you're giving because it's one of those things I find with a lot of people. You should never feel like you're a burden on health care system You just shouldn't, what you should see is I have something to add here and i'm going to add it because most often what I hear from people is they don't say things and they wish they would have been more vocal earlier and it would have turned out better.

Bre: 22:12

Yeah. Yeah. And that was one thing that definitely, I don't know if just like our surgeon really empowered me or just. Just that mama bearness. I just would go in and I got to the point where, you know, if I'm so because his esophagus doesn't work quite right now. Let's reverse a little bit. He healed so well. He had, he, they told us when he was born, he would be in the hospital for six to eight weeks to eight months. So it's a huge span that they tell you that you're going to be at the hospital. Well, he, because our surgeon was able to do this new surgery, he actually was only in the NICU for two weeks. when he was born, which is basically unheard of. He healed so fast. They told us that he would, um, if we wanted him to leave the hospital, that we should just give him a bottle. And he still was able to breastfeed just like any other baby. Like it was just pretty incredible. The progress that he was able to have in the two week time period that he was at Primaries. But then. Because now he has, he does have an airway and he does have, have a working esophagus, but they weren't, they didn't grow normally. So both of them have scar tissue, have weak spots, which basically continued to kind of plague him for the first two years pretty seriously.

Phil: 23:35

Is it pretty stenosis? So does it? Is it smaller in areas? So he's choke risk on everything that he eats.

Bre: 23:39

He doesn't have actually stenosis, which is pretty rare too most kids do when they have a repair site. He just doesn't. Um, he has scar tissue and no, what is the word? I think it starts at the P where your esophagus pulls the food down.

Phil: 23:55

Okay. So his food doesn't move naturally down through so it sits and he has to. So how many times has he choked in the first two years?

Bre: 24:03

Oh, I mean, a lot. So the first, so when he was a baby, choking wasn't an issue because he wasn't eating solid food, right? He wasn't choking. He was just only drinking milk. And that was probably more when I feel like his airway seemed like a bigger issue. Because first of all, babies only cry because they can't talk and because his airway was also weak. Every time he would take a deep breath in his, it would, it would basically vacuum his airway closed. So he would cry like, and it would just close down.

Phil: 24:37

Oh, so the way that we see our kids going to vapor lock, he really was in vapor lock. Like we don't like just give them a minute. They'll breathe. You're like, I don't know if he'll breathe.

Bre: 24:45

Yes. So this was happening a lot. Every time he would cry, almost he would stop breathing. So I kind of, we would, we learned how to work through that, right? I had this special thing where I would hold him on his side and Do all these things. But then, um, a few times that didn't work. And so just because your esophagus or your trachea also is sticky, right? Yeah. And if you have a cold, it's stickier because you have phlegm and all of that in your airway. So there were a few times that it didn't open back up and we were doing CPR and he ended up having to get another surgery, uh, called an aortopexy where they lift your trachea forward so that it couldn't close as easily. And so there was a lot of really, really awful things.

Phil: 25:33

You were offering CPR like it's just like a normal thing as if like every parent's done it. Yeah, we have to do CPR a few times.

Bre: 25:39

Yeah. Yeah, it was, it was rough. And we were practicing it at home with our kids, like, probably once a month, just because we were nervous, like, what if we are out of the room and something happens? We just wanted to everybody to be able to understand how to do it. And that was

Phil: 25:54

You and your husband have not gone on trip alone in, by this, like, how old was he before you guys actually took the night alone?

Bre: 26:01

Oh, we, oh, I don't even know. Years old. We took him everywhere with us. We didn't leave him alone. Ever.

Phil: 26:06

Like, that's what I think. Like, you guys have not, like, it was not even a thought in your brain.

Bre: 26:11

No, no. I didn't trust anyone to, to be with him. And then once he started breathing better, then the choking kind of, like, stepped in. Became an issue. Because then he's eating more food. And then that became a big issue, too. We had a pretty serious time where one of our kids had left some food out. And he ate it. Because usually we cut up his food. But, you know, we have five kids, so it's like, somebody takes a bite of something and sets it down there. And he's two and he's like, yeah, I want that cheese stick. Right. So he starts eating a string cheese and completely total blockage, chokes, loses consciousness, like awful. And that was a really terrible thing for my husband to have to experience. But we. Thankfully, he's always come back to us. So,

Phil: 26:56

Well, it's the experience you have is also just huge too, because I've, I've noticed a lot of parents that are in true crisis that have, they're so much better than they are the ones that have somebody who's struggling. So my kid gets a little bit of croup, I freak out your kid breathes like that. And you're just rolling through it. Like it's like, and it's funny how we can adapt and adjust. until we crash. And so it's a very interesting thing that you bring up that there was a time where you needed to heal. Because I think anytime anybody goes through a traumatic event like this, there's a point where you take a deep breath and just want to cry for like three weeks. Just like, yeah, just too much.

Bre: 27:33

And it almost felt like maybe I felt like ungrateful because it was like, Oh my gosh, he's finally doing good. Why am I doing bad? Does that make sense?

Phil: 27:44

It does. It's funny how, how the grace. Comes in at that point, You can cope with it. And then one day you're like, okay, you don't have to cope with it anymore. And it's almost like something is taken away that superpower you had. It's ripped from you and for the first time you feel, I don't know, it's almost like you relive everything all at once. You're like, okay, I'm still in here too. It's no longer about cleaning airways or making sure you don't get sick. Nobody in this house can get sick. If you're sick, you got to stay away. Like it's one of those things where you get to become part of who you are again. So I think it's a great message for people to hear.

Bre: 28:17

Yeah. Yeah, I mean, it was definitely took a lot of work. But one thing that was kind of interesting. So my son's in kindergarten now, and he was the VIP at his school. And while he was there, the teacher sent a paper home saying like, write a story about yourself. And this kind of comes back to what you were saying at the beginning is I had say, write a story about yourself or tell something that makes you special. That's what it's saying. And I'm thinking like, well, I've got a lot of stories that make you special. You know, you all of these things, like you,

Phil: 28:50

You almost died 12 times.

Bre: 28:52

Yes, like all of these things I'm thinking. And he's like, so I'm asking him like, what do you think makes you special, you know? And he's like, well, I'm funny, mom. I can ride my bike. And this was just recently. I mean, this was probably just this last month. And I, it just kind of hit me in that moment. Like, We are allowed, our stories don't have to define us, right? How you were saying, like, you're thinking about all these things, like, medically, and it's like, we are allowed to heal and move on. And I'm not saying that's not part of his story anymore, because it is. And honestly, at this point, I feel like it's almost part of my story more than his, because he doesn't remember any of it, right?

Phil: 29:31

Yeah it's not like he had two childhoods and like, well, that one sucked and this one was good. Yes. He just, that's what it was. It was what it was.

Bre: 29:36

Totally. Totally. And so that moment was for me as I'm like, Oh my gosh, he's okay. And I can be okay too. You know?

Phil: 29:46

Yeah. Well, and it's okay to be all the things like you can be, you can feel like, oh, I wish that we could just go on regular vacations. You can, there's some point where there's a whole huge difference between not feeling grateful and understanding your situation.

Bre: 30:01

Yeah.

Phil: 30:01

You can totally accept the fact that your life sucks and it's hard. And still be grateful for everything you have. You don't have to be one of those people that says everything's great. Like you don't, you can be like, it's terrible, but we're used to it. So it's great. It's fine. Like, there's a difference there. And that's what I like about a lot of your story is it's because at some point, just absorbed it. Like this is how it is. And that's such an important thing. You, you quit fighting against it as much. It seems like I'm watching your thing and at some point you just start rolling in saying we're going to live this and that's what we're going to do.

Bre: 30:34

Yeah. Yeah. But yeah, him just reminding me like, Oh, I'm, I'm funny. I can ride my bike. I, you know, it's just was really healing and just like you're saying like it's just almost like it's that happened It's like that chapter kind of where we can close that chapter and move to the next thing. It's still part of it But it's not defining everything we do anymore and that, like, was just a really, I don't know

Phil: 31:01

He was behind the boat just a few months ago, right? Yeah, oh yeah. It was like, you're like, I mean, it wasn't even like, it was a great achievement because he was able to get behind the boat, not because a kid that had all these issues got behind. It was just like, hey, he's doing it like everybody else and I love that moment. Totally. I want to go a different direction just for a second. It's so easy as a mom and as a dad to say, okay, I'm going to tell you all about this kid, right? What about you? Like, how was your journey through the whole thing? I mean, you know, you, you learned all these things, but do you feel like when you look back on it, are there things that you look back and say, okay, this made me a better person because that's one thing I found with my oldest who has all these things. I look back at it and I think. I don't know. A lot of times I look at Jonas and I think I was so glad Jonas came first because it changed the kind of parent that I was like, I was cruising before that I was going to have a rock climbing canyoneering buddy, we were going to go hunt, it was going to be this thing. I had all these plans of him becoming this or doing that. And at some point it just made me a softer individual and I see people different, because of him. And I, I feel like it's unfair of me because I learned because he has the problem. But I'm better because he has that.

Bre: 32:16

Oh, yeah. Yeah. I would say that's definitely the silver lining of like any of the hard things that we go through in our lives, right? Is that it just opens your heart to so much more empathy and understanding for other people. And I mean, for sure, I understand so much the complexities of like grief, you know, and, um, just Complete overwhelm

Phil: 32:46

Did you get tired of hearing, if you need anything at all, call me. Did you get tired of hearing that?

Bre: 32:50

Well, I mean, cause I definitely was not going to call anybody because I was so overwhelmed even making a call was like more than I could have ever been able to do. Right?

Phil: 33:00

And there was people in your life. I don't know if it was your parents or your friends, but there were certain people who wouldn't ask permission. They just came and did, right?

Bre: 33:10

Oh, for sure. And sometimes that was embarrassing. I remember one time when it had been a really, that we had had a really emergent situation with him breathing and the ambulance had come to our house and we had left and my husband and I had gone and We didn't even know, like, people came to our house, took our kids, and I come home, my whole house is clean, the laundry's done, and I'm telling you, at this time, we are living in survival. When I tell you there was, like, 20 loads of laundry, and my whole house was messy, like, that is not an exaggeration.

Phil: 33:42

Peanut butter and jelly was chiseled off of the counter. Yeah. We've all been there, don't be worried, like, we've been there, it's just usually we get to lock the door and clean it up later. Yeah. But you didn't have that.

Bre: 33:51

Yeah, but we didn't. And it was embarrassing for me at first. And it's still kind of, I guess, is embarrassing. But at the same time, like, these people that love me, like saw a need, and they filled the need how they could. And so I think that's another thing that I learned, like, to be humble enough to be like, you know what, these people just love me and are trying to find a way to offer me support. And I needed it. And like it was embarrassing, but I needed it. I needed someone to help me. I wasn't going to be able to catch up because now I'm in the hospital for whoever knows how long. And then you come home and always transitioning home from having a sick kid and being in the hospital is hard. And it's hard on your family. It's hard on your other kids. Like there's just so many different things. But I mean, I would definitely say that, like, back to your question, just about how I feel like it's changed me is I just feel like in general, like I just have so much more empathy. For people going through hard things, not even necessarily the same hard thing as me, but you just realize like people's hearts are aching. I remember when I left the hospital and I didn't have my baby, you know, he's at Primaries and I'm leaving by myself. And then when he was in Primaries, you know, we're going back, we were staying at the Ronald McDonald house and we'd have to go get food and do all these things. And I go to the place and I think these people don't even know that I'm doing the hardest thing I've ever had to do. And I'm just here at the grocery store, you know?

Phil: 35:15

Right. You're just trying to cope and you're waiting for the breakdown in a second.

Bre: 35:18

Yes. So I think how many people are here at the grocery store with me right now that are like literally doing the hardest thing they've ever had to do and we don't even know. You know, their, their spouse is, they're getting a divorce. Their mom has passed away. Their child is sick, whether it's physically, emotionally, or mentally. There's so many things that I'm just like everybody is going through something really hard and then we just still have to keep doing these normal things to stay alive, right? We still have to go to the grocery store. I still have to do these things from, I have to show up for my kids at this or that or whatever. And it's, it's hard sometimes just to show up, you know?

Phil: 35:57

Well, it's funny because the way that we exert things, so often on like social media or any place else we get, you get these negative comments. And I first got them and I wanted to battle with these people because I thought they were exerting malice intent towards me. And then one day I was watching a child and their mom inside of a store and the child started just throwing a fit. And the mom was a newer mom. As you get older, you realize that when a child's throwing the fit, the best thing you can do is just stop and listen to the kid. But as a new mom, you're embarrassed and you're looking at everybody else. So the mom was doing, was doing all those things. And I was watching him. So she's going to learn it. Like you just sit back as an older parent. You're like, don't worry. By the time you have your fifth kid, you'll know what to do. And then I realized right at that same time, somebody said something just. Absolutely atrocious on one of my social medias and I'm like, Oh, they're probably just lonely. They're probably just sad. And so when I started looking at negativity as being the same way that our child is negative, because deep down, we all still react the same. It was funny how fast empathy comes in because like it's really quick thinking. I wonder what's happening in their life that allows them to feel that way. Did they just lose their job?

Bre: 37:04

Mm hmm.

Phil: 37:04

Are they worried about their parents? Are they and it's funny as soon as you switch you're thinking like you're talking about and you see that person of saying like just for two seconds You think what bad thing could be going on in their life that you could help with how fast it is that the difference is between you and the person you like the least go away.

Bre: 37:22

Yeah

Phil: 37:23

I love that like that's one thing I look at all the time I'm, like I used to like compare and I'd be angry because I'd like okay well, why did they get all that and we have to do this? like Here. My kid is at six and he's still not potty trained. And I have to hear about how they didn't make the first team on soccer. Like, you know, how little I care about your conversation. And then I realized for them, it probably feels the same, even though it wouldn't feel the same in my life.

Bre: 37:50

Yeah,

Phil: 37:51

I love that. I totally love that. All right. So what's the worst thing, worst advice you got through this whole process? I like the worst advice because what happens is. We always get this advice from people and it, and you just listen, you're like, how does that seem reasonable to say to someone? And it's one of those things I always like having because it's okay for you to listen and nod and smile. And you're like, okay, that's terrible advice.

Bre: 38:15

Okay. Let's think. I mean, I don't necessarily think I got any particularly bad advice. I think the worst maybe thing that I did though, was the internet rabbit hole.

Phil: 38:27

Oh, I'm sure that was a bad one for you. There was no from learning to when he's 25. This is going to happen to him.

Bre: 38:37

Yes. Yes. So, I mean, the internet, I guess, isn't necessarily I think it's a really great place, but it's also maybe when you're like, in crisis, probably not the best place to go for your advice.

Phil: 38:50

At least not without having somebody sitting next to you saying, we should probably pull this back.

Bre: 38:54

Yes. Yes. Cause it's like even me on the internet, I could Google one symptom and then tomorrow I might be dead. Like, I don't know. I'm just saying like,

Phil: 39:02

It's like the Foxworthy joke where his wife says she's got all the symptoms, and he says you don't have prostate cancer. Oh.

Bre: 39:11

Yeah, that's, that's a funny one. But yeah, definitely, like, that's, I don't know. I would steer clear of the internet, because that's not necessarily the best place to get your advice.

Phil: 39:21

I think that's fantastic. What is the thing you think back and you're like, okay, this moment was just, if everybody could act like this person, this person that did this thing, if everybody could do that, what would you suggest to people to look for like to do? Like, there's a lot of people who are listening right now who have somebody who's going through crisis right now, one way or the other, and all of us want to help, but we feel discouraged because we're like, well, I don't want to interject myself in this life. I don't really, like, I don't want to overstep my bounds. And this is something I wanted to talk to you because you've been through it. So you're on the back end of it. What is a good suggestion for people to do when they're trying to help somebody going through the crisis?

Bre: 39:59

Oh, I mean, if you're doing for someone, okay. Food is always a good idea. That's my, that's my best advice for people. If you want to help someone, I think food is always a good idea. I'm like thinking, even if, even if you're, we're not even going through something hard, if someone came to my house and was like, Oh, I brought you dinner tonight. Like that is always a nice thing to do for somebody. So for sure, food is always a good idea, but I just think, you know, giving people a lot of grace showing up without any judgment. I don't, I mean, because you do need your people, but it is hard. Like I said, I wouldn't have felt comfortable reaching out to somebody or kind of, it's, it feels like you're showing somebody like the worst parts of yourself. The worst parts because you're in the hardest time, right? Yeah. So just show up anyway, I would say for people.

Phil: 40:59

I would also think it's, it's a lot easier. And this is one thing I always suggest to individuals is that you have to put the groundwork in before you never know whose crisis is going to be next. Yeah. Yeah. And if you've been there when they didn't have a crisis, like you're this, the one, like you just, you saw that a garbage can wasn't out. So you roll the garbage can out there. You saw that their gate was open. You closed it. You shoveled their walk. Those people are so much easier to accept help. from when crisis hits than it is that person who, you know, but you don't know. And so it's such a good thing to always be. I think it's always this good thing saying I want to be there for that person. So I'm just going to bring them cookies just because then when I bring them a meal, it feels so natural.

Bre: 41:40

I also think once you have been through something like. I don't know. This is why this like this is so great that you're doing this because you've gone through things with your family and you're sharing your experience, like there's someone that I know that's child just went through something pretty traumatic. And like I am like making sure I'm showing up for her because she knows that I get it. Right so it's for when so when she tells me like I'm having a really hard time right now and like, she knows that I get it. So I think that's kind of almost becomes like your responsibility. I don't know. After you kind of are, you have experienced something to make sure that when other people, when you can help, You step up too, right?

Phil: 42:27

Right. Well, and it feels so much better too. You were talking back at the beginning about how hard it was to accept help. You said it in your own words, but it's actually so much easier to try to give it because it makes you feel like you're getting, it's so hard to remember that people want to help you. And so. Anytime somebody does offer you something, I'm a lot more accepting now, even if it's like, hey, let me come help you do this. I'm like, honestly, you'll be in the way is what I would have said before. Now I let them come help because I know that that connection you have with somebody who's willing to help you. Doesn't ever change. You remember not only being the one to give help, but to receive help. And that's what makes us all just better people, just generally speaking. So I want to make sure, did we miss anything you wanted to cover in any of this? Is there any part of this that anything you want to make sure all the people know about?

Bre: 43:12

Yeah, I would say, um, if I could say one thing that I felt like was really, really important for me and my, for my son really, in his journey is like, you are your child's advocate. Don't wait for someone to show up for you. I remember like, and I had to learn how to do that. When our son was born and my, our surgeon told us, um, I'm going to be your person for the next two years, right? Like you're gonna, when you need something, you call, like, I'm, I'm your contact point. Well, then we come home and he's like three weeks old and this is when he starting to stop breathing all the time, and it, I almost like didn't even though she had told me that, I didn't believe her. So I remember trying to call our pediatrician and trying to do all these things to get, but like, I didn't understand how to advocate for him, and I didn't, and then it got to the end, you know, like, if I was going to, Even to our, uh, local hospital here now, I'm, I've evolved it that I'm calling them on the way saying, Hey, I'm bringing over Jensen and I want you to pull up his chart. And like, I'm already prepping them for what they're, what we're going to show up as, right? Like, he has something stuck in his esophagus. I don't, you know, I'm telling them what I need now, instead of waiting.

Phil: 44:31

We, need a real ENT there because you're going to fail and you're nice about it.

Bre: 44:35

Yeah. Yeah.

Phil: 44:37

But getting organized in your thought processes for your child is so important. You have your notes, you ask for copies of their chart. You learn about it. And if you think something, this is such an important thing. When you advocated the most effectively. What were some of the tools that you use? Because there's a lot of people who hear those words like, okay, but what does that mean to advocate? So what are important tools people need to be able to advocate? Because that's one thing is once you start getting, I don't know, some people are spreadsheet people and some people are note people and some of them are, you know, but how do you, how would you suggest somebody just getting started in that process to be able to be an advocate for their child or for themselves or for their spouse or for their parent?

Bre: 45:16

Yeah, well, I mean, first of all, like I said, when he was in the NICU, we were asking a lot of questions, so I think it starts there. Ask questions. Why are you doing that? What would happen if this happened? Because I was saying to them, they had talked about his airway, and I'm saying to them, what would happen if his airway vacuumed closed? And they're, you know, like I, so I think that's where it starts because I'm information gathering from the right source, right? I'm information gathering from the doctor who's helping my child. So I think you need to start there asking those types of questions. And then, you know, I took, I, recorded everything. And um, there's also, I, I like wrote things out, but some appointments where we would, we would go down to Primaries and meet with like four or five specialists at one time. And they call it clinic and you meet with the, the feeding tube doctor and you meet with, you know what I'm saying? Like you're just meeting with all these people. There's apps, um, that you can like record things in that you get permission, like with the doctors and they just, so you don't have to remember things, but it helps you be able to absorb things later. Especially if you're dealing with really medically fragile kids that have a lot of complications. I think those are good places to start.

Phil: 46:24

I love the recording. Like, I hope people hear that. Like, you need to ask them, can I record this? Because as smart as you think you are in the moment, two hours later, you forgot. Like, everybody's like, I don't remember what they said really. Like, you think you've got it in the moment and you're like, I don't remember one word. Yeah.

Bre: 46:41

And there's special apps that are like made for, I can't remember the name of the one off the top of my head, but I would use this one that was like for recording medical things.

Phil: 46:51

It's so great advice and then from that then you get to go home and what you do is because you recorded it, you're reviewing it. And because you reviewed it when you're heading in next time you're ready.

Bre: 47:00

I know what I want to ask yes.

Phil: 47:02

Beforehand and that is such an important thing you know, you should trust your healthcare professionals, but you shouldn't rely on them to do everything because they're going to see your emergency and the next person they see is the same amount of emergency. And it's someplace else. So you really do have to know what you're talking about and say it. And if they're not listening to you, you make them listen, because if not, they're going to waste 30 minutes or an hour or whatever it is. And you don't have that time. So I love it.

Bre: 47:29

I would just say also like, as a parent, like trust your gut, like when I would go in and I would telling when I was first describing that he was stopping breathing, they kind of were like to my pediatrician and stuff. They kind of were like, Oh no, like a lot of people, babies. I don't remember what they would say. Like they would call it like maybe like a blue spell or whatever, which is kind of how we would refer to it. But I would just like, I don't think you guys understand. He's trying to breathe and he can't, and so it's you being persistent. Like so if a doctor, and I don't think it's by like them not caring about you, but they're not seeing your kid every day and day out. They don't know what you're describing. So if you feel like a doctor doesn't understand what you're saying to them. Keep trying. Like, if you, uh, you are the mom, and I really think that, well, I mean, I'm the mom, you're not the mom, but, you know, the parent, like, you, I have this intuition that nobody else has about him. Like, I just know.

Phil: 48:29

You can hear his breath. You know, when he blinked weird because the doctor would never know those things because they just saw 15 other kids who all blinked different than your child, who all breathe different.

Bre: 48:40

Yeah. So I say don't be willing to push for more. Like when you're like, this doesn't feel right. Something else is going on. It's be willing to push for more. You don't have to just take their word for it.

Phil: 48:54

Right. You don't have to be a jerk, but persistence will make it a better prognosis. So yeah Okay, last question. First of all, tell us your handles again on IG it's@bremill, right? Yep And then it's the what is it on YouTube because your YouTube's got a lot more in depth stuff Yeah, the YouTube channel is called Meet The Millers and it's a fantastic journey you guys need to go check them out. Anybody who is going through anything with anybody with health things go watch it because you get to see the whole progress of the family. It's really nice to see because they do have this underlying, but then you just get to see the progress of the family and how they grow. My last question is this. I think we can make the world 1 percent nicer. I really do. I think everybody listening. I think that if we all chose today, just to make it a little bit nicer, it could change the world. And so I always tell everybody at the end of the podcast, go call somebody that you love. Send a text that's nice. But if you were going to give advice to people on how to make the world 1 percent kinder, what would you say?

Bre: 49:51

Oh, I would just say. We need to love more, you know, just like how I said, when you're showing up, you got to realize people are going through their hardest things. So I don't know, give people a little bit more grace, be more forgiving. I know that's not one thing, but it's kind of all encompassing, you know,

Phil: 50:13

Forgiveness, I think jumps all the way through there. I think it is the most beautiful thing. When somebody cuts you off. Maybe they've got a real emergency at home and they're not just being jerks. When someone jumps in front of you in line, maybe they really are in a bigger hurry. Maybe there is something. So I love that so much. Well, thank you, Bre! Thanks for being on. Thanks for having me. I want to say thank you one more time. And for everybody listening, if you like the podcast, share it with somebody. Follow it. Let's just keep this rolling and make sure you give somebody a hug today because hugs I really think change the world like I know it sounds funny, but a nice seven second hug to one of your kids will change their lives.