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You’re tired.
Not just physically; though yeah, that too.
You’re tired in your bones. In your soul.
Trying to be a steady husband, an intentional dad, a man of God… but deep down, you feel like you’re falling short. Like you’re carrying more than you know how to hold.
Dad Tired is a podcast for men who are ready to stop pretending and start healing.
Not with self-help tips or religious platitudes, but by anchoring their lives in something (and Someone) stronger.
Hosted by Jerrad Lopes, a husband, dad of four, and fellow struggler, this show is a weekly invitation to find rest for your soul, clarity for your calling, and the courage to lead your family well.
Through honest stories, biblical truth, and deep conversations you’ll be reminded:
You’re not alone. You’re not too far gone. And the man you want to be is only found in Jesus.
This isn’t about trying harder.
It’s about coming home.
Hey guys. Welcome back to the Dad Tired podcast. As parents, most of our biggest fear is that our child might be diagnosed with a complicated or life-threatening illness. It's really, for many of us, our worst nightmare. And beyond that, the pain and the grief, the thought of losing a child would test us as parents to the limits.
It would really put into question, our ability to persevere, to have faith, to believe in God's goodness, in the midst of such deep pain. I'm not sure if all of you are aware, but Dad Tired is actually a mostly volunteer run ministry. I'm the only full-time person, and beyond that, we really are just run by volunteers and being such a lean operation, trying to find new guests for the show can sometimes feel overwhelming.
And so I'd put out a post a few months ago asking for some help in this area, and within 12 hours I had received a response from Susan who has now become a big part of our team in helping find and source guests that you hear on the show. Throughout her time here serving on the team at Dad's hired, Susan and her husband Nick, have actually endured a deep season of pain that has, as I mentioned earlier, really tested their faith, their perseverance, their endurance, and, and really the belief that is God's still good in the midst of deep, deep pain.
As you listen today, I want you to be aware that the story you're about to hear is incredibly heartbreaking, but it is very important. It will put on display the profound lessons and the power of trusting God's goodness, his grace, even in the midst of tragedy and loss. But as you listen, please be prepared that today's episode is going to be a heavy one.
Nick and Susan, really glad that uh, I can be sitting down with you guys today and having this conversation. I'd love for you to maybe just share what the last couple years of your life has looked like. Um, well, I think, you know, we were living a pretty typical life. We had a daughter and just wanting to grow our family.
We decided to try for another kid. We'd always known that we were gonna have a boy. And so, and we'd always talk about, yeah, we'd always talk about this idea of having a son. For whatever reason, it was just kind of ingrained in us that we were always gonna have a boy. Uh, and his name would be Tommy Mass.
He'd be the coolest guy in school. Um, Susan's dad's name is Thomas. Um, you know, Gianna is our daughter's name. And, um. Kind of a combination of my mom's name, Georgia, my grandpa's name, George, my grandma Anna. So it, it, it was pretty dad side, uh, heavy. But we always knew that if we were able to, fortunate enough to have a boy that it would be Thomas.
Mm-hmm. Um, and, and the first time we got pregnant, we were, I both very surprised that it was a girl. I was surprised. I didn't think that we were having a girl. I thought we were be How long were you married when you first got pregnant? Uh, I think it had been two years. Okay. So very pretty normal, you know, life circumstance.
Yeah. You get married a couple of years in, you have a baby girl. Yeah. So, um, right after her first birthday was, uh, her first birthday was January, 2020. So about a month after her party, COVID first came around and changed the world. We always said, you know. If we're fortunate enough, we'd love to have three children, but we knew we definitely wanted to try to at least have two.
And so, you know, as COVID was kind of easing up a little bit, our daughter was two and a half. It kind of felt like the normal progression of, okay, well now it's time to try four. Yep. For another. Yeah. So we did, we got pregnant and then we found out very quickly after that it was gonna be a boy. So we were, yeah, over the moon.
Yeah. So excited, super excited. It felt right. Our daughter was excited. Our whole family was just over the moon as, as any family should be. And, um, everything was going well. Um, but about midway through pregnancy at our 20 week anatomy. Scan. Yeah. Um, you know, our doctor who's very thorough and very good, she kinda went through it and said, you know what?
There's something here. Let's, let's go to my office and, and talk about it. And so went to the office and, you know, she kind of told us that while she's not the one that really, um, diagnosis or to text this, something that she saw and wants us to see a specialist. But what she saw was, um, having detransposition of the great arteries, which is really, um.
When your heart, um, it's congenital heart disease and your aorta and your great pulmonary artery, they're actually swapped, um, and plugging into the wrong spot. So normally where you have unoxygenated blood going through the lungs and then oxygenating. Um, and it was reversed. So where you had blood that wasn't oxygenated was going to the brain and body and the oxygenated blood kept going, cycling through the lungs, you know, so, um, not a problem while in the womb.
Um, but something that, um, we found out, we went to, you know, specialists at UCLA and they officially diagnosed it and we were made aware of, you know, hey, this is a very serious thing. Uh, but fortunately we have a lot of success with this. Um. Of all the ones to get quote unquote, um, this is the one to get because we have a lot of success in fixing it.
The plan was, um, around day three of life after birth. We would go ahead and have the surgery and he arterial switch surgery. Um, he'd be in the hospital probably for a month total before ever coming home. But, um, other than, Hey, Paul, don't play football, and maybe he'll be a little undersized for his first years of life, he'll catch up.
Hmm. If you're a parent or you're hopeful to become a parent one day, I want you to close your eyes and just imagine what Susan and Nick were going through at this time. They had dreamed of having a little boy. They get pregnant with a boy and then they have this kind of news come up midway through their pregnancy.
Even knowing that the surgery needed is common and it's often successful, just imagine how adding this kind of uncertainty to the equation would really test your faith. Your son prior to birth has already been faced with his first big obstacle in life, and God has tasked you as the parents of this little boy to partner with him to go on this journey.
I think I was probably more scared than Nick was. I think Nick felt pretty confident about it. Um. And that's, that's typically our demeanor. Yeah. In most, in most cases. Like all worry about something. And Nick is very like, it'll be fine. It's gonna turn out okay. That's, that's generally true for men, women, like, we're just like, yeah, it's gonna work out.
Yeah, exactly. So, uh. So, yeah, I was definitely, and weirdly so like I was weirdly nervous about his life, knowing other people who have had to have these surgeries before turn out totally normal, and that could be either. I felt like something was gonna happen or it could just be a mom worrying. I'm not sure what that was.
And the more we talked to the doctors, they were pretty confident in what we were going into. Uh, they do numerous surgeries for this a month, and we were seeing the best person essentially in the world. That you can see our, our surgeon, they dub him the LeBron James of his cardiac surgery. He's, he's extremely talented.
Uh, so it was supposed to be very normal. And, and you know, obviously I think too, like when you find out something is wrong, you know, prior to birth that early, obviously I think. You'll get presented with, do you want to continue with your pregnancy? Yeah. Those types of things. And obviously with us, there's just no doubt in our mind's, like there's nothing that's gonna have us say no to that.
But we were just really confident and we well, you know, and it was like no matter what the challenge is, we're up for it and he's gonna be fine ultimately. And maybe we'll have a rough start, but you know, our hope was. You know, by the time he has memories and remembers it'll all be behind him and he'll just have this gnarly scar on his chest that will make him cool.
Um, and so, yeah, that was kind of where we were, you know, this, this required a lot more, um, hospital visits, especially when we were getting closer toward to end of term. So we do a lot of different scans and, and nothing really new came up. I think everything they saw was just kind of consistent with the, what their expectations were as we.
Got closer and closer to birth. Yeah. Walk us through, um, day of birth. So it took a little, took a little while for him to be born. I had to be induced with Gianna, our first, and they had to induce me with Thomas because they wanted to make sure that the whole team was there. Right. So the last thing they want is spontaneous birth.
Uh, 'cause they don't want him being delivered at home. He's gotta be delivered at the hospital with the best team. Around him in case anything happens. They expected him to to come very quickly and he didn't, so there was a few drops in his heart rates. It's kind of a, a little bit of a rollercoaster. We stayed strangely calm.
I think everyone else around us was not as calm as we were. Um, yeah, we, it was, it was rough because, um, you know, they had the fetal monitor heart rate on, and, and there were times during contractions where it would start to spike and it was kind of one of those things where the doctor would come in and didn't love it, but they really didn't wanna have a vaginal birth.
And so it was kind of just a lot of back and forth of monitor watching, which was stressful, let alone. Susan's going through these contractions and the pain that comes with that and, and the discomfort. And um, as we're getting close, they didn't like what the heart looked like. So we mostly precautionary reasons, but we got kind of rushed into the, um, operating room just in case they needed to do emergency C-section, but like within minutes of being in operating room.
Yeah. So as they were wheeling me back, um, as soon as we got into the operating room, it. Chaos. Especially emergency. And so I was so close and they're like, can you do this? Can you just, can you give us two good pushes and maybe we can get 'em out? And I said, yeah, like, let me try. And so I gave two pretty hard pushes and he came out and great.
He cried right away. Everyone was really happy. Yeah. And there was an applause. I cut the umbilical cord. We were feeling great on top of the world. Uh, and I remember just from my bed, just, I kept looking at him 'cause I couldn't see him yet. I remember just looking and being like, I hope he's okay. I hope he's okay.
And well, they did when he came out. They did put him on you right away for a second. Yeah, yeah. For a second. A couple seconds. Yeah. And then, um, and I could see all the doctors surrounding him and then, you know, everyone's, you can kind of feel the temperature of the room go down and everyone's feeling really good.
And unlike most people, if they're child is born and gets whisked away and we have to go to a different room, you know, we were prepared for that. So we knew like, Hey, this is the plan. Say hello, and then we're gonna take him to the, the ICU. Um, you guys will go back to your room and, you know, we'll let you know when he's ready to be.
Yeah. Visited. So Nick went, escorted him to the ICU as part of the plan, and then I went back to the room just to get cleaned up and ready to go. So you came back, everything was great. They were feeling good. They're like, here's some of the waivers we need to sign in case you need to do this, we need to do this.
So did all that and went back to meet Susan in the room. We were so excited. And five, 10 minutes later, probably 45 minutes after life after birth, um, a panicked nurse or doctor, I don't know, came in and was just like, he's coding. And we're kind of like, what? And that's a really interesting moment and time when you get told news like that.
It's a strange sort of outof body experience. And I just remember the nurse walking in and, and she's looking at us and she goes, your son's coding. This is a very serious situation. And I remember looking at her 'cause my brain hadn't caught up to what was happening. And I just was kind of staring at her and I was like, and then finally I just said, and, and she said, there is no, and this is a serious situation and your son needs, or your husband needs to come back with me right away.
Hmm. So at that point, I, I lead with the nurse short walk into the the ICU. It's pretty. Foggy to be honest. But I just remember just more people than could fit into one of those ICU rooms. And some people looking at me like, is that dad? Like, uh, he shouldn't be here. Um, and they ended up having me go back, um, and then go back to Susan.
Um, at this point they're still, and then they would just come, give us news and, and so now we're just sitting in our room completely helpless, just geez, like, is our son. I'm gonna survive if he does. What does this mean? And so. Our surgeon, who's supposed to do the main heart surgery, ended up having to put him on ecmo, which is a heart and lung.
Yeah, it's kind of like a life support, essentially. Life support. You know, this machine has two tubes plugged into your neck and just these two thick tubes of red and this, this machine pretty much functions as your heart and lungs. If his heart was complicated, the natural hole that exists early in life, um, where the blood allows you, is allowed to kind of mix the oxygenated and then un oxygenated in the chamber of your heart that eventually closes.
And that's why well, you could survive those first few, first three days without having the surgery. Eventually you can't. And, um, even with the chest compressions, there was a lot of non oxygenated blood going to the brain during the 45 minutes. It ended up being of CPR, um, prior to them being able to get 'em on the ECMO machine.
The surgeon came in to speak to us, and this is, it's, he was born in the afternoon and it's nighttime, so a lot of time has passed and they had called him in to put him on the ECMO machine. So he literally came in and basketball shorts and like, in order to look a little bit more professional, you put on a.
Sports jacket. So he's sitting there with us and he was clearly in the middle of a workout, gets the call, rushes over to the hospital, manages to get him on ecmo, and then has to be the one in to come in and deliver the news to us. So his news was, we cannot perform the heart surgery anymore. It has nothing to do with the heart.
It now has everything to do with the brain because the brain lost so muchs oxygen, we can't trust it to survive such an invasive surgery. That's if he survives, that's if he survives. Yeah. At all. Yeah. So that's sort of the message that we were left with. He was born at, I wanna say I think like four 40 in the afternoon.
Um, they wheel us over to the other side of the hospital or the other side of the maternity ward, which is kind of one of the worst things you can do for a mom who doesn't have her baby, because all night long you're hearing babies cry and you're hearing moms, oh geez, bring them down the hallway. And it, that was a hard.
Moment. Um, so it was just Nick and I in this hospital room. Yeah. Together. Yeah, thinking about the story of Tommy's day of birth to this day, I was inspired by the strength that Susan and Nick possessed to endorse such a rollercoaster of emotions and news. As parents, we invest so much hope and love and faith into the outcomes that our children experience in life.
And to have these hopes jeopardized within the first hour of your child's life is such a difficult situation. It's almost unimaginable. But after this day, they sat together waiting anxiously for medical staff to provide more news. About the condition of their newborn son. So I think finally at 9:00 AM the next morning they walked in and they were like, he's stable.
Um, he's on ecmo, he's stable. You can come see him now. He was lifeless and puffed up because he had just gone through this whole ordeal. We couldn't even even see him breathe because his chest, it was just, everything was just inflated. Yeah, it was like a balloon filled infl. Um, and, uh, his neck turned to the side.
You see these huge tubes, tubes come out of his neck machines everywhere. Um, it was just, it was awful as you could imagine. We'd seen him only once before and that was his first. Three minutes of life and this is what you see next. And we heard him cry when he was born, and like now we're thinking, are we ever gonna hear him again?
Is that the only sound we get? Are we ever gonna see his eyes open? So from there, um, it was just kind of a wait and sea game. They, you know, no one had any information for us. They just, it was either he was gonna survive or he wasn't gonna survive. And then the next question was, if he does survive. What does his brain look like?
What are the MRI scans gonna tell us? You know, there obviously a couple days of just nothing. Um, just kind of letting him. His body cover and then it was, okay, we're gonna prepare, we're gonna try, we, we are gonna try to take him off the ECMO machine. And um, I just kind of waiting for a text, like, or a call, you know, I don't know what it's gonna be if like, your son's dead or we got him off the ECMO machine.
Um, but he successfully came off ecmo, which we were very relieved and, and thankful and obviously we were praying that that was, would be the result. And we were very fortunate he was continuing to get better. So every time we walked into the ICU, he'd be off another machine. He'd be off another medication, he would be off something else.
We, we were there when he first opened his eyes, which was one of the most incredible experiences. Wow. He had these bright blue eyes that came out of nowhere 'cause we blue eyes. Um, and just these amazing experiences. And what we were seeing was with our own eyes, Nick and I were seeing a very awake, cognitively intact.
Kid who knew when we were there and who knew when we weren't there. And he, he was fully aware of everything. Um, we had the, we, we got the mri. They, you know, the mri, that was the next step. Yeah. The MR MRI came back looking really bad, so it showed a ton of damage to his brain. So the neurologist said, you know, we don't expect him to talk.
We don't expect him to. Breathe on his own. That would be very surprising. If he was able to get off the ventilator. We think there's a good chance he'll be blind. Um, we're not sure he'll be, have capacity to think. Uh, we maybe one day in life he'll give you one sign of emotion. Geez. It was very, it was very bad.
It was, you know, developmental. It was physical, it was, think of the most. Extreme case of cerebral palsy, you know, just like, oh, everything. It almost puts you into the mental space. It's a terrible thing to say, but you're like, if all that is true, like it's him surviving like a bad thing. Yeah. You know, you really like, you start to think and you never think you can think of that for your little baby.
Yeah. We're all of a sudden, death is not necessarily the worst case scenario just to, because of the, the quality of life that they're describing is just so terrible. Yeah. Yeah. Yeah. And while this is going on, Nick and I can clearly see with our own eyes, this is not actually the direction that he's heading in.
We can see Yeah. What they're saying and what you're seeing are two different things. Two different things. Yeah. And I heard multiple nurses say that to us as well, where they're like, this is not. What we're seeing until finally they were like, he doesn't actually need to be in the ICU anymore. So they moved us over to the peds floor, which is the hospital, but not ICU.
So every day, Nick and I would get up, we'd get our coffee, and then we'd head straight to the hospital and we'd be there for 12, 15 hours. And then my parents or Nick's parents would come and put him to bed. Um, and how long did that, that routine go on until eventually they were able to say, I think you can take him home.
Two months. So we, we came home November 1st. It was the, the, the day after Halloween. 'cause they, he dressed as a little pumpkin, um, in this hospital room. Um, I, I, I do wanna say prior to us getting released to a different neurologist came in kind of younger. Mm-hmm. He sort of came in. It was really, it was an interesting way for coming in.
'cause he. Typically neurologists, they walk in packs. Yeah. So you'll, you'll watch a group of them walk through the hospital and they run everything by each other and they do everything together. Uh, and so he kind of, and guys like side footed in, you know, and he like snuck into our hospital room and he was like, you don't know me.
But I know your son and he goes, I just wanted to say I, I'm not seeing the signs of anything that the other neurologists have told you. I'm seeing signs of life and I, he, he can clearly see he is definitely not blind. He's like, look, he's like, I don't have kids of my own, but if I was a dad, I would wanna know this information.
And I'm just telling you that I'm, I'm very hopeful about his outcome and, and what the progression that I'm seeing make even in this short amount of time. And before we were discharged as well, they said we have to do something about his heart. He can't, he cannot. Oh yeah. Go on very much longer. Um, so they said, so you guys have to make a decision either, either we send you home on hospice or we're gonna send you home with a stent.
In his heart, the main surgery was out the door. It wasn't gonna be possible, but there was a surgery that they perfected in the 1950s. That helped people live till like 40 or 50 years old. So they said Maybe we can do this, and then there's a chance maybe we can get him 40, maybe we can get him 50 years old if we do this.
So we had a big family meeting. We decided to put in the stents. Yeah, in his hearts. To us, it felt like we were scared going in. And then once they kind of presented the options, it was like, no, this is no pressure, a no brainer. This is a stent that. As a temporary fix, all it does is buy us time, which, how do you not take that choice as opposed to going home on hospice.
So, and we're, we're an extremely pro-life couple, so we didn't wanna be afraid of, um, caring from, we didn't wanna say like, this is too much for us. We don't have the capacity to do this. We wanted to be up for the challenge. And also knowing that whatever the Lord had planned for us, that's what he had planned for us.
And if that meant. Caring for our son. I think we were very happy. Yeah. And we just told each other like, what better are we gonna do? What, what else are we gonna do with our time? What else are we gonna do with our, what's the better thing you could do than take care of your son? So you guys make that decision going home.
We're going to, we're gonna do the stint and this is gonna prolong life. And knowing, like what you just said, we're, we're okay with sacrificing if it means we get to be with our son. And that would start. Months of you guys really laying down your life, like putting that to the test, right? Like you guys Yeah.
Spending days and nights caring for your boy. It just was the start of our new life. I'll never forget coming home, finally leaving that hospital with him, coming home without your baby. Um, that was a really hard thing coming home to your daughter who, when you left it was, next time you see us, we're gonna have a little baby.
Um, oh man. Yeah, that was hard. So now we were finally leaving with him and that was a, a special moment. We were just so grateful that he's alive. Um, we were just so grateful. Yeah, we were. And, uh, it was a thing where. Yeah, you could take him for a walk. But to take him for, he, he would throw up a lot. Um, almost every feed do you need to make sure he doesn't throw up all over the stroller.
So like, just taking a walk around the block was something that we couldn't do every day. We would do it as much as we could. That was our adventure out and be like, let's take a, a little walk around the block. Yeah. And obviously throughout all this, it was just a lot of making sure no matter what, um, our daughter didn't feel this big hit, so we had a lot of focus on trying to keep her life as normal as possible.
We'd have to switch off one-on-one at times and this and that, but it really took out all the, the normal stuff of dinner with friends or, you know, we had a, a close circuit of friends that would come over and have dinner and hang out and see the kids and we didn't feel like we were really missing out on anything.
But, um, we were pretty much. Landlocked home locked, so to speak. Did you guys get to the, even though this isn't normal, like this new way of life for you guys wasn't normal, did you get to a spot where it's, it felt like your new normal and you almost, it became like, this is our routine. We know it even though it's.
Chaotic and this would feel chaotic to anyone else. For us, this is our new normal. Yeah, absolutely. When we first came home, I don't think it's helpful to be untruthful about anything. So when we first came home, it felt like a prison sentence, and even though you love your child and would you anything for him, and clearly we were doing all that we could.
It was about two weeks of learning everything, learning the oxygen tank, learning the medications, getting up with him multiple times throughout the night, and it just felt like a prison sentence. It's like, okay, this is my new life. It's pretty painful. Uh, and then you get used to it and then things and, and just like you said, your new normal becomes very normal.
You just learn things so quickly. It was really hard and we did not sleep. Um, you know, things change obviously throughout his life. Um, but every day we were seeing huge progress. So with every week that passed, he was doing something different and he was. He started smiling and then he started laughing and it was, yeah, and he was gaining weight.
Gaining weight is an incredible thing to. Watch and to experience and I think especially for us, 'cause you feel so, I mean as parents you just, you feel so accomplished. I think even though we have nothing to do with it, it was absolutely the Lord who sustained him and helped him to grow. I think there's a sense of pride and feeling really proud of ourselves that we are not shying away.
We're doing the work and our doctor was like, this kid looks amazing. They were like, this is remarkable. We're so proud of him or proud of you guys. And they were like, I think we can do the original heart surgery. I think. He's well enough, everything looks great. And we went in and they said, plan to be here for a month.
Um, and we were out in 10 days, so totally different experience from our first time around. And it was just, it was amazing. So we get him back to the house, surgery goes great, everything went well. And he's off oxygen. It's just a whole new way of money. Well, it's just like, you know, when you're on oxygen as a baby, it's, you never see your kid without tape and something in his nose.
And that's, Susan would always be in charge of. Changing his tape out, and he's always attached to something no matter what. So you can't just pick him up and walk to the other room. Like you have to have a plan for any sort of movement. It's even like. Hard to hold him sometimes. So to come home without oxygen and, and not just to come off without come home without oxygen, but to see his oxygen le levels at 98%, 99%, a hundred percent.
And they're in the sixties. Yeah. On oxygen. Before we were in the sixties and low seventies, that was with all the oxygen supplementation. His color looked different. You know, he didn't look like this. Greenish gray. Yeah. Like he looked like this white and pink. Yeah. Little baby. He's just like, who is this little guy?
Everything was functioning well. Um, and other than like he had, obviously you couldn't hold him under his arms 'cause he had to let the chest heal. But by the time we left the hospital he was so happy and smiling and laughing and, um, it just felt like we even kind of, it was told to us like, Hey, we don't think he'll ever have.
Any other heart issues again, you know, other than like normal heart issues that come later in life for anyone potentially, but we, we think he's past heart. His heart looks great and like to hear that and to see the development of the brain and like things he's already doing, like your mind starts to go to instead of worrying about like.
If, how, when his heart's gonna stop working, it's now let's like start focusing on rehab and like, let's try to get off the G-tube next and let's try to get standing. And, and the stuff that, you know, if he can't do it all, that's okay because his heart's not working and he at least knows who we are. And he could see and he could smile and show emotion.
So now we're like, we don't know where his quality of life is gonna ultimately land up, but we know. He's here and he is gonna be happy and, and, and that we could, you know, work on different things to try to get him to where he needs to get, you know, so it was kind of like this cloud nine for a month. And then just on a normal follow up, they discovered the doctor.
They were like, Hey guys, his pulmonary hypertension looks pretty high and pulmonary hypertension is high blood pressure to the lungs. The reason why they do the surgery five days after life is because the lungs and the heart can start working together. If you do it any further out, then you run the risk of getting pulmonary hypertension, which is the lungs aren't.
As strong, the heart is overworking itself and it just can throw everything out of whack. Um, this was a diagnosis that was serious and oxygen was back on. Um, and it wasn't getting better. Um, and then I think just 10 days to two weeks later after the initial diagnosis, um, we were back in the hospital for another, he got sick.
Yeah. Month and a half. He got, he got just the virus. And that put us in the hospital for almost two months. And we were still very hopeful. The numbers weren't getting better, but we were just doing all we could, you know? And we got released from the hospital and celebrated and, and you're back in the hospital.
Yeah. So it just became, and so every cold that he would get would essentially put us back in the hospital. It would either put us in the hospital or just be these 10 days of hell where no one slept. But you know, for people that have, a lot of listeners that have children, they know, especially these last two years, it feels like.
Like, it feels like our daughters has a cold more often than she doesn't. It's not like this seasonal cold that you, oh, great, we got it over with. It just feels like it's just relentless and keeps coming back. And with him it was just, you know, he is gonna get it. You try to prevent it, but he does. And, and then it was just kind of, you know, that, that endless.
Cycle cycle. Nick and Susan had successfully helped Tommy survive birth. They had helped him become healthy enough to have the heart surgery for which he was previously ineligible for in the aftermath of the surgery. They were really blessed with the opportunity to get to know and become close to their son like they had never before.
Even with these cyclical colds that had begin to occur, I want you to imagine the gratitude that you would feel after going through all the trials that were presented to Susan and Nick. You finally got an escape from the constant medical care and were able to spend some quality time with your son, counted all joy, my brothers.
When you meet trials of various kinds for you know that the testing of your faith produces steadfastness, and the steadfastness has its full effect. That you may be perfect and complete lacking in nothing. James one verse two to four. We were in physical therapy, we were in occupational therapy and he's just, he's doing really well.
He was starting to say, mama, he is starting to say data. Um, maybe, you know, stuff that I think maybe, I don't know what milestones are for a normal child. Maybe that's a six to eight month thing. I don't know. Or maybe eight to 10 month. But you know, he was doing this around 16. 17 months and we were getting pumped up and, you know, saying hi, you know, saying, where's data?
He will look at data or where's mama? And then he will look at me. Yeah. Um, great. Giving high fives, you know. Yeah. So he was just, um, really happy and engaged. And it wasn't just that we knew how to make him laugh. He knew how to actually make us laugh and he would literally do stuff that he knew would, would make us laugh.
And, and it was so fun. Um, and of course we know that this pulmonary hypertension is. It was always looming and it's something that we were not familiar with. And of course 'cause we're, we're not in the medical field, but the lungs are notoriously hard to work with. And then, uh, about. Two and a half months ago, he got another cold and we were back in the hospital.
We were thinking same routine, sort of same deal, alternate nights. Who spent, what night do you wanna spend the night in the hospital? The night, yeah. We just kind of get back into our normal routine hospital and the doctors are like, he might be out tomorrow, but let's just, let's look at him for the night.
Yeah. See how he's doing. And it was very, it was quickly becoming apparent that he wasn't getting better. We were on the main hospital floor for. Two nights and then it was Nick's turn to go home and sleep. And I called him in the middle of the night and I was like, they're moving us to the ICU. His heart rate is dropping, his oxygen's dropping, and they need to put us over in the ICU.
This wasn't something that was unfamiliar to us, so we weren't super alarmed by it. But you told me you should probably get here. So it came starting back up? Yeah. Um, because I think at the point they were calling for all hands on deck type. Yeah. Yeah. Um, rapid response and, and all that. But, but yeah, we got back to the ICU and he clearly wasn't comfortable, but you know, he was still there.
He was talking to us in his own way. Stable. Stable. Yeah. Um, and my parents saw him too, and they were like, something's off. He clearly doesn't feel good. So at that point, Nick and I were like, well, let's just get a hotel room next to the hospital. We'll sleep so that we can get there at 5:00 AM. If he wakes up and put him to bed at 10:00 PM So we did that for the first night and he was really stable.
Everything looked pretty good. His blood work was coming back. It seemed like he was starting to get over it. So we were like, okay, we'll just put him to bed. He slept in and out that whole day, but you could tell that he was really uncomfortable. But we still felt pretty confident. So we stayed and then we went back to the hotel room that night.
And then we got a phone call at, yeah, I mean, 6:00 PM It's crazy. I woke up and my phone was on vibrate. I'd only missed a call by a couple minutes, but there were like six calls in a row from, you know, it's like, one's an unknown number. One's like the ho, the normal hospital number. You know, it's all these different numbers, but you know what it is?
Susan gets on the phone, calls them, and Yeah. Um, was our attending, our attending who we knew very well from when he was born and she's like, listen, we're doing CPR. Uh, we need you guys to get here right away and you need to tell us if he wants to put him back on ECMO because it could be extreme. He, since he's already been on ECMO once, the likelihood of that you're gonna do well on ECMO a second time, it just goes down.
Um, and so I, I just didn't know how to answer. Yeah. So I, I, I'm just, I'm like, yeah, ecmo, you know, like, yeah. So, you know, we're just like getting up. Trying to, putting our clothes on. Yeah, just running out the door. Um, we got there and they're doing chest, they're, they're still doing chest compressions when we get in.
And, um, whole ICU is just flooding. I think at that point. Like, our mind is already going into that place of, this is it, this is it, you know. And, and, um. Yeah, uh, they finally finished the chest compressions and they get 'em on ECMO successfully, I guess. Um, and um, it was, um, same two tubes, um, but now on the other side of the neck, 'cause you can't do the same side and just head to the side and lifeless.
There's something about when we first saw him, it was, there was hope and like all of a sudden you just kind of didn't feel like he was there and you had the, he had the 36 or 40, however many leads on his head, showing a monitor across the, on the other side of the room that normally would have lines, squiggling everywhere, all over the place.
Like how do you even read this? And literally just parallel lines all around just showing that there's just no brain activity. And um, so we talked to the doctors a little bit and. They, they didn't sugarcoat anything, but they did say, you know, regarding the brain activity, he, you know, just had a traumatic, you know, event and there's been a lot of medications on him, so, you know, maybe they'll pick up and it just never did.
And, um, you know, we just, I knew, I don't, I don't know if it's a mom thing, um, but I knew he wasn't there. I mean, we, we walked in and I was like, he's. He is not here. It was so, it was so different from the day that he was born. But, and we weren't like hol holding like on like saying like, come on, brainwaves.
Like, there was like no desire to like even ask about them anymore. Like, um, we knew, yeah. It was just, we knew that it was his time and um, that he just wasn't there. Yeah. So, yeah. Uh, so it was literally one of those things where the doctors. After a few hours of just the normal wait and see if anything changes.
Eventually the next day, you know, the neurology comes in and take the lead, the leads off. There's still just parallel lines. There's just confirming that there's no rain activity. And really we wanted to, to get everyone there, um, my brothers, Susan's brothers and sister and just close, immediate family, um, to, you know, just be able to say goodbye even though we knew he couldn't hear us.
Um, but, you know, just to, to be there for, for that process. Uh, just, I mean, every parent listening just is our worst nightmare that you guys have lived through. Yeah, it's surreal 'cause you're looking back on it and it's, it's just total out of body experience. Um, coming from a place of faith, I knew that I had to thank the Lord for exactly.
What we were walking through. So I called one of my best friends, who is a musician, and I was like, grab your guitar, meet us over at the hospital. We're gonna worship. Um, and so she came in and I was like, I'm gonna be grateful and we're gonna sit here and we're just gonna worship at his bed. Um, and so we did that for a day and then that night we brought in our daughter to say her goodbyes as well.
We, we felt really. Sure about making sure that she had that last goodbye. Yeah. Even though she's so young and doesn't really, you know, it's very hard to sort of understand. The last thing we wanted to do was all of a sudden your brother just kind of disappears and Yeah. You know, that's a much more confusing conversation.
And so we were very adamant about making sure it was final and that he was dying and this is final and he won't be coming back. So the plan was we were gonna take him off of life support the next day and then let her say goodbye right now. We're gonna go home. We'll be with her tonight and we'll all, you know, sleep together and cuddle together and have that moment.
And then, uh, that next morning my brothers got there. Um, and so just the whole family showed up. We went in there and we turned on some worship music and we told the doctors that we were ready to take him off of life support. So, and that was around. At 3:00 PM Sunday, March 5th. Mm-hmm. Um, you guys were, and I'll just add this, just, I mean, it was so, it was really hard.
I mean, obviously hard, but, you know, the, even the doc, just the whole process of coming off life support, where the way they described it was, you know, well first we'll take out the ventilator, then we'll pretty much kink the, the ecmo and it'll take anywhere from 20 minutes to a few hours, and you're just like.
Yeah. Like how much worse can this actually get? Um, but it was amazing. You know, we had the war shit music on and um, literally as they're like pulling the ventilator out of his mouth, um, it's the Chris Rice version of Oh, freedom's plane. And it's just like, I don't know. There was something like, yeah, it was a really beautiful moment, comforting of just like.
I am with God now, like I'm not attached to these machines. And um, it was amazing too 'cause we didn't, we didn't plan for that to happen. And I remember hearing that song as the doctors are taking the ventilator off and that song starts playing. Um, and, and just the sovereignty of who he is in that this moment didn't take him by surprise.
That nothing takes the Lord by surprise. And that. It was such a comfort for that song to come on and spoke to me so deeply of like, I knew this was happening. This isn't a surprise to me. There's a plan as well. This isn't just in vain that you guys are walking through this. And immediately, once the life support came off, I mean it took maybe 90 seconds until the doctors came in and said he was gone.
And, um, it was comforting. And obviously it's still a hard image to have in our mind, an image that probably sneaks in too often, but, uh, was very peaceful in how it happened and, um, glad the family got to be around. And I think, and it's a terrible thing to say, but it, there's like this, this relief like of just seeing how fragile he ultimately was.
I think you always know, but you, you're kind of like, oh, maybe we'll just power through this cold or this or that. But I think just the relief of we did everything we could. He was in the hospital for days before he passed away. It wasn't something where we woke up in the middle of the night to a lifeless body or Yeah.
It was kind of like God took that off of us of like, you've gone through this. You did as best you can, but we're not gonna have like these, was it your fault feelings? And I know a lot of people that it was, their children probably have to have that and it's unfair. But we felt fortunate that at least, um, we knew that we took every step, possibly we knew we did everything we could.
What strikes me most about Tommy's tragic passing is how in the midst of their worst nightmare, the family welcomed God into the hospital room. In the midst of the fire, the grace and the glory of God shined through giving hope and reassurance to the family, and mercy, to the suffering. As he took his last breaths,
man, it just rips your heart out. I've heard your story in a. Just hearing it again, just rips my heart out. I had the honor of getting to be at his memorial and hearing just so much about his life and see people around you that love you. One thing that stuck out to me so much was, um, your ability to point back to the goodness of God in the midst of the war's possible pain when the Bible talks about his is sufficient for us and it's like had.
Somebody told you at any point this would be your story at any of those points, like from the birth, the day that he was born to you guys going every day of the medication list that you were talking about, like any of that, you probably would've said, I can't do it. Yeah. Like there's no way I can do this.
Absolutely. And yet through every step of it, God was just great. He was sufficient for you that day, like you were able to get through that day. And even describing, taking him off life support, it's like every parent who's never experienced that listening is like, there's no way I could do that. But somehow you can.
In the middle of that say it was actually, there was, there was some beauty in there. Like something about that moment was even like. There was the goodness of God and the beauty of God, even in the midst of literally the worst possible scenario. But Susan, you talked about that a lot at the memorial, and I'd love to for you just to like maybe just end our time with just thi like talking about how you meet God in the fire.
Yeah. Like you meet God in the pain. Yeah, absolutely. And what that's been like for you guys. Man, I think that they're, I think, I think trials are good for. Everyone, I think that they are necessary for believers. Mm-hmm. Uh, I think it was George Whitfield who said, we all wanna go to heaven on a featherbed.
Right. We all wanna. Mm-hmm. And he said, and none of us get to, we, we must walk through. The gates limping and what an incredible, uh, visual that is. And also just partaking in Christ suffering and partaking in these things that he asked you to walk through. And what they do is they divorce you from this world, which is so important.
Um, the first time I ever heard Chris Kin speak, who, um, is on the podcast as well. Uh, it's interesting. Chris and I are the same age, and, uh, Paige passed away a month before Thomas was born. Mm-hmm. So I heard him speak probably it was seven months after she had passed. Uh, and we were just in the midst of this, in the midst of medication not sleeping.
Um. And I went to church this one morning and he was our guest speaker and he was speaking on the Olive It discourse, which is for anyone who's not familiar. It's what we should expect before Christ returns for the second time, what the world is gonna look like. And something that Chris said, which resonated with me so hard was he said, guys, I am a man with five young children and I just lost my wife.
No one is ready for Christ's return more than me. I. And I, as soon as he said that, I was like, that is exactly how I feel. What a strange gift, but a gift that that is to be ready for the Lord to return. And I think about all those verses where he says, I'm coming back for those, looking for me. I'm coming back.
For those who are looking up, I'm coming back for those who are longing for my appearance. And daily I think about that and how I'm ready, like I'm ready for him to return. I'm ready for the new world. I'm ready for everything to be made new. And if I was walking along in life and if everything had gone according to my plan, and we have that dream life, the 2.5 kids, our house, those are the moments that you're not ready for his return.
Those are the moments where you're, you're holding on to the worlds, but when he takes something that is so. Dear to you, and he just divorces you from that world. It's a, it's a gift. Um, and it, I think it's something that I've really been holding onto, which is I'm here, I'm taking the next step. I'm getting outta bed.
I'm doing it for my daughter. I'm doing it for Nick, but I'm also ready. And I just think that that's kind of been the story of, of this trial for me. I, it just, yeah, it just makes me think of that verse when Jesus said, blessed are those who mourn. Yeah. For they will be comforted. Um, Nick, what has this done with as you process like life and God and all that stuff, man, like what is this?
Pretty much ever since you, you get the initial diagnosis and then just desperately be in prayer for the first three days of your son's life. Just praying. Betty will be able to see his eyes that he'll survive and just, it's hard. I, I think it's, most lives come with loss, but they, a lot, a lot of 'em don't come with unexpected loss.
And I almost feel like I. It's one of these things that if you really, really wanna have a full life like this doesn't complete it, but it's, it's essential. Um, something you don't want. I think it opens up a door that you know is there, that you're just don't want to go down. I think you have this, this opportunity to.
Just really get mad at the world, really get mad at God, um, and really let this terrible event continue to grow and, and hurt your family. Um, you could see why some people would go down that road. I have zero desire to do that, and for me it's just to continue to try to be the best person I can for my, for my best support for Susan, best support for Georgie.
And, and Susan has been so inspiring through this because I. I don't know if I'm ready to say I'm ready for Jesus to come. Mm-hmm. I would, I, I know that you should be there at some point, and I don't know if I'm as confident, you know, I think I still have work to do, but, um, I think who better to, to be with that could help me get there?
And, um, these things happen and it just opens up, continued conversation with God. And I think that that's a, a great thing. You lose a kid and now you're like, well, when I die, at least I get to be with my kid again. And like ultimately, I. What I really should be thinking is I get to be with Jesus, um, and Thomas, of course.
And I think like it's easy for your mind to just like kind of go with, I wanna be with Thomas again, but, you know, 'cause you, 'cause you know what that's like, you know what being with Thomas is like, and I don't think any of us fully understand what being with God's like, but, um, you know, hope to live the rest of my life to put myself in that position.
Man. Honesty, there's really refreshing man and so refreshing and how, how brave you are to say that, to say. And I don't know. I feel like that's so helpful for, for other dads out there that aren't totally confident in everything that they believe and aren't totally sure. I think it can be very helpful to hear someone go through the worst circumstances and just kind of as honest as you are.
I think that's really, really, yeah. I agree. As a final word for parents, I guess what would just be your final words of thoughts or wisdom or perspective? I. For a parent listening to this right now? Yeah, I think, uh, I was texting with you and Layla the day before we took him off of life support, and I remember saying to you guys, there's a reason why Paul said be anxious for nothing.
And it wasn't because Paul didn't think that we weren't gonna have to go through hard things. Paul was sitting in prison as he's writing this letter and so. I was just thinking about his words, about being anxious for nothing, and yet here I am, worst case scenario at my son's deathbed, this is the worst it can get.
It doesn't get much harder than that. Um, and thinking back on Paul's words, as he was writing that in a similar hard situation, being in prison and knowing that he says, be anxious for nothing. Not because we aren't gonna go through hard things, but because you can't anticipate how Christ is going to meet you in those moments.
And it was such an incredible thing. There's something that happens when you face your worst nightmare with the Lord. Nothing is as scary anymore because of the way that he shows up for you exactly as he says he's going to, and I think it was just putting him to the test in that moment of my life and everything he said he would be.
He was in that moment. Mm-hmm. There was an incredible amount of peace as we're sitting there in his room. Taking him off of life support, you know, does it mean that you don't have hard days? Absolutely not. I'm surprised by the moments that I get caught up in where you'll be, you know, doing something very happy.
You're going along with your day and then a memory will creep up and it totally takes you out of everything and just kind of bowls over you. Um, but for the most part, I mean, the piece that. Pastor's understanding is there and it's just, there's a level that you go with through the Lord when you've faced your worst nightmare, and he's still just as faithful in those moments.
And it's a deeper knowing him. You've gone through the fire with him, this is probably not the last fire we will go through. Uh, but you can trust him. And I think that that alone is an incredible gift. And so as our imaginations try to get us anxious, our imaginations try to say, what if? What if. Uh, you just, you can't, you can't understand how he loves you and shows up for you in those moments.
I remember you texting that to us and Layla and I, that it just stuck out to us so much, uh, that, that phrase, everything he said he would be, he is, or everything he said he would be. He, he was, um, I would like. You should like get that in a poster and put it in your house. Yeah. Just as a reminder. Yeah. As a memorial.
I'd put it somewhere prominent. Yeah. Because it's just such a reminder for all of us. Like, um, there's going to be storms in this, in this world. You will face trials, but take heart. I am with you. Yeah. And, and for you to be in the thick of it and to be able to say everything you said, you would be, you are right now.
Like, holy cow, what a testimony. Um, I'm so thankful that you guys took the time to share your story. I know this is so fresh. Like this is this, you're not sharing story years later, like you're sharing your story barely months later. Yeah. And so I'm sure it just brings up all kinds of pain and, and emotions.
But thank you for being brave enough and willing to, to sit down and share your story. Love you guys. And I'm so grateful that God crossed our paths when he did and, um. Yeah, I'm just, I, I'm, I'm really, really thankful and I'm really excited to see how he continues to draw you guys closer to each other and closer to him, and we're so grateful for you just to.
Drop everything and, and to be there, yeah, to fly across the country and be there for us was such a gift. And we are so thankful for, um, you sacrificing your time for our family. Um, and I don't know if this is a, if this is something that people actually tell a lot, but I had, I've had so many people come up to me and say, Tommy's celebration of life was so perfect and so great.
And, um, it really, um, made a difference and, and meant a lot to people. So we're very grateful for that too. That was our prayer, you know, that God would use that memorial service and celebration of life to just draw all of us back closer to him. And I think that that really, I, I feel like that day was so special.
Yeah. Um, in that way. So I'm really grateful that I got to be part of that. Well, thank you guys. I'm so grateful for you and, uh, thank you again for sharing your story. Yeah. Thank you. Thank you. As I sat down and I listened to the story of Susan and Nick and their family, what really stuck out to me was the testament to continue to find the glory of God in the midst of tragedy.
I've been so impressed with Nick and Susan and their ability to seek God's goodness in the midst of their worst nightmare. The reality is that all of us will go through some deep pain in this life. Jesus never promised that we would be pain-free. In fact, he told us the opposite that in this world we would have many trials of various kind, but to take hope that he would be with us.
And so as you move throughout your day today, even after hearing such a painful story, um, and you're faced with all the realities of the pain that comes in this world, I want you to ask yourself, is Jesus enough? Is he enough for you in the midst of the deep pain that you will inevitably experience or are experiencing right now?
Is Jesus enough and friends like Nick and Susan, would you say? Yes, he is enough in the midst of the worst pain, Jesus is still enough. His grace still is sufficient for me. I wanna thank Nick and Susan for being so gracious and vulnerable. To share their story with us and to point us back to Jesus and the hope that he provides for us.
I love you guys. I hope this episode was helpful for you on your journey, and I'll see you next week.