S8 Ep2 Transcription
Season 8 Ep 2
•• Please note that this is a computer generated transcript and there are potential errors. For this recording, there was an error with the recording software so unfortunately the voices are not labeled in the transcription.
Giving Hearts Day Live Podcast Event
Season 8 Episode 2 "GH thrivent like podcast recording"
Ashley: [00:00:00] Hello, beautiful mamas. It is a Tuesday night at nine-nineteen P.M. We are coming at you with sleepy eyes, greasy hair.
Aisha: sweatpants,
Ashley: the,
Ashley: we are full mominate right now.
Aisha: lots of technical
Aisha: difficulties.
Ashley: It wouldn't be a podcast episode without some, so, um, here we are just. Me and Aisha are here just living our best lives, doing our best. But Aisha, you look beautiful, mom-in-it. I am admiring.
Aisha: It's because I'm co my angle, I'm trying to cover my big
Aisha: zit on my chin.
Ashley: Oh girl, do you wanna see all mine? They're literally covering my jawline. I'm meeting with my dermatologist
Ashley: this week, so
Aisha: What is going on?
Ashley: You turn 30 and then your skin's like, I hate
Ashley: you.
Aisha: Oh my
Aisha: gosh,
Ashley: Yep. Except like this time your parents aren't paying for your acne treatments. You are. And Proactiv never worked.
Ashley: So instead of it being like $15 for a bottle solution, it's like $90 and you're like, excuse me. This cannot be right.
Aisha: I need you to coach me because I don't have a skin routine whatsoever, and I know I can't get away with it for too
Aisha: much longer.
Ashley: what they tell us. Right? They're like drilling it into us lately of like half skin care
Ashley: and
Ashley: you're Like, I'm trying.
Aisha: Like, you need to moisturize. I'm like, what
Aisha: is that?
Ashley: exactly. I love it. Well. This is fun to see your face at nine 30 P.M. on a Tuesday. Um, I'm all about it. It is a party. Um, but this week's episode is a little bit different. We're actually sharing, , an episode that we recorded live. So, um. We had our, we have two large fundraisers throughout the year for Dear, NICU Mama, and one of them is a local one here that supports Midwest Charities and we, , are fortunate to be a [00:01:00] part of it.
Ashley: And so it's called Giving Hearts Day, and it's a party. Our whole town gets involved and it is just such a beautiful way to connect with so many NICU families or people that are touched by the NICU because they have relatives or siblings or grandkids or all of the above, and it's just a really special day.
Ashley: The energy in the town is just, it's a
Ashley: blast.
Ashley: Um.
Aisha: Oh, what I would
Aisha: give to
Ashley: Come next year, come join next year and
Ashley: be a part of it.
Aisha: I will, I
Ashley: Some people literally dress head to toe in red and like wear hearts all over their bodies or get temporary tattoos. I mean, people go all out. It's really
Ashley: fun. But, um. Something that we did this year was we partnered with a local, um, financial advising company.
Ashley: Well, actually, I guess I should resay that. One thing that we did this year was partner with a, um, a financial investment firm, and one of the individuals is somebody that I actually know from college, so we go way back, but him and his wife had a NICU baby. He's six now, but he, with his company [00:02:00] was like, we wanna give back to Dear NICU mama, this giving hearts day.
Ashley: Could we, you know, what could we do to kind of like boost your NICU mama, raise awareness. And I was like, do you wanna share your story? He's like, wait, what? I was like, yeah. What if you and your wife shared your story live on a virtual podcast and it gave family members and people in the community to come and hear your story?
Ashley: And it was so much fun. I wish you could have been there to co-host it with
Aisha: oh my goodness. Well, that's, I'm so glad that you recorded it and. Now I have the chance to listen to it because, um, it truly was such a beautiful, uh, conversation, so honest and so vulnerable, and it's all we talk about here at Dear NICU Mama is the power of our stories and sharing them, um, and how that can be so healing as well.
Aisha: So it, um, it was so fun to, to be able to. To, well, I did catch it the live on Facebook as well, but to, to be able to edit it and listen to it again, and it was such a beautiful conversation and you let it so beautifully like you
Aisha: always do. Um,
Aisha: but tell me
Aisha: more
Aisha: about, well, I was gonna say, tell us a little bit more about giving and what Dear NICU Mama was able to
Aisha: raise
Ashley: Yeah, it really was like, even beyond our local [00:03:00] community, we saw so many donations come in from members of the Sesterhood, and it was just so, so fun and just like I was in tears. There's a video of me in tears that my husband
Aisha: I was gonna say, if you haven't seen the video, go to stop. Pause the podcast, go to the Instagram and
Aisha: look for the video of Ashley reacting to the
Aisha: final
Ashley: emotional that day.
Ashley: I was
Ashley: so
Aisha: It will
Ashley: day, literally. And I think the video
Ashley: is, when we
Ashley: hit It was like 20082 cents. 'cause our goal was 20,000. And when we hit that 82 cents threshold, I was like, we did it. That was a total mess. Um, but yeah, giving Hearts Day was so special this year. I. I think one of the extra special parts of it is that I had Silas with me on the day.
Ashley: Um, and so he went with me to deliver the Valentines that we always do traditionally for giving Hearts stay, and he [00:04:00] got to see some of his NICU nurses that took care of him, and it was just like such a full giving. Hearts Day always feels like such a full circle moment for me because one of the. Things we always do is go to the NICUs and connect with the staff and just thank them and love on them a little bit, and love on the moms.
Ashley: And so bringing Silas with me was just so surreal and one of our favorites was working that day and so she got to give 'em a big hug and it was just, it was really fun. Um.
Ashley: But yeah, it was, it was a whirlwind of a week. We crammed a lot into the week. It was, uh, it went really fast. But like I said, there's just this energy that is just so palpable and tangible and people are just excited to support nonprofits.
Ashley: And I really am biased when I say this, but like. Our local area has some truly remarkable nonprofits in it. Like I looked over at Ryan at one point and I was like, if I had a million dollars, I would donate it to every, I wish I had a million dollars for every one [00:05:00] of these organizations. Like truly are doing life-changing work.
Ashley: And um, I got to connect with some of the people that work at Ronald McDonald house here locally. And so we wanna do some collabs and different things. And it was just really, really special. And because of your guys' generosity and the generosity of, our community here, we were able to raise $22,400.
Ashley: And I just literally woke up completely in awe because I think, you know, you always. I don't know. I, I think going into the year, you look at it at a glance and you're like, here are the things that we hope to be able to do. Will this be possible? I don't know. You know, like, will this actually can, can we make this happen?
Ashley: And so then to start the year off with that money to know that like, we can still do this work, like we can still serve these moms and support these hospitals. And it was just so incredible. And. One of the new kind of initiatives that we launched for Giving Hearts Day was what [00:06:00] we call our Walking Litter of Hope initiatives.
Ashley: And this is our first ton of test run of it. We hope to be able to continue to expand it to more hospitals, but we started here locally and it is to provide NICU moms in the NICU with Dear NICU Mom merchandise. So.
Ashley: For any of our members of this community that have purchased a sweatshirt or a T-shirt, you know, for so many of us, it's more than just a shirt.
Ashley: It's literal armor. It's what we wear. What do we need to feel surrounded when we need to feel held, when we need to feel brave, and we wanna make that really accessible for moms in the NICU. And so part of this initiative is that every a hundred dollars of a thousand would be. Donated directly back to Merchandise for Moms.
Ashley: And so then with this initiative, we're able to, you know, put that in a separate pile of money, or I should pile of money sounds really, um, like redneck, but into this pool of money, into a separate little pool of money [00:07:00] that will provide, you know, 20 or $2,400 of merchandise to moms in the NICU and.
Ashley: When we were doing the math too, of like what we would need to be able to support the number of beds that we have here locally and like in our surrounding areas, we'll be able to cover all those beds.
Ashley: So it's just
Ashley: amazing. I'm
Ashley: so excited
Ashley: about
Aisha: I was just gonna say, can you imagine being in the NICU when you were in the NICU and
Aisha: receiving a Dear NICU mama sweatshirt that
Aisha: gave you literally the words you
Aisha: needed to feel
Aisha: empowered in that moment?
Aisha: It, I mean, it will have such an impact
Aisha: and. I,
Ashley: yeah.
Aisha: I personally just love that initiative and I think that it's such a easy way to feel like a more tangible
Aisha: way of, um, of supporting, um, [00:08:00] NICU moms that are, um,
Aisha: currently
Aisha: at their babies,
Aisha: you know, bedside.
Aisha: So
Aisha: how cool is
Ashley: Yeah. absolutely. I know when I saw the number, I was just
Ashley: most
Ashley: excited. I'm like, oh my gosh. We get to support all of our local moms, like all of our moms and moms and surrounding areas that are in hospitals. We have some smaller NICU units in other cities in our area. Or in our state. And so to know that like we will have enough in that pool to do that and then, you know, to really dream about what can this initiative be, you know, moving forward, how can we continue to partner with more hospitals and make this accessible and really like drive that
Ashley: initiative. So I'm
Ashley: really, really
Ashley: excited. But, uh, one thing is at one of the hospitals I, we dropped Valentines off to, we were kind of like on the corner of the hallway and. Right in front of us was a mom and dad in the NICU with their baby and the dad was doing kangaroo care. And I just like you look at that [00:09:00] and it, you just remember like,
Ashley: oh, is Ava up? Is It Ava or
Aisha: handy.
Ashley: Oh,
Aisha: His head
Aisha: just peaks. He just got
Aisha: back.
Aisha: So I muted 'cause I was like.
Aisha: I wanted to yell like I'm recording,
Aisha: but
Ashley: Be quiet. I love it.
Ashley: can keep that part in. That'd be
Ashley: funny.
Ashley: Um,
Ashley: but you just, I looked at this couple and you just forget like how much of a bubble you're in, right? Like you literally, they looked like they were in like a snow globe. You just looked at them, I was looking at them from the outside in and you're just like in this glass room basically, and you're just holding your baby away from the rest of the world.
Ashley: And it just was so beautiful to see that. And it really just, again, that full circle moment of like, I remember being in that place, I remember what that felt like. And
Ashley: so, and the mom was like so sweet. She like smiled at
Ashley: me and I was like, oh my gosh, like I
Ashley: just wanna go give
Ashley: you a hug.
Ashley: So anyways,
Ashley: but.
Aisha: Oh well that is So
Aisha: incredible. And
Aisha: yeah, I mean. It's just, it's really cool to see and to start the year off like that and, you know, just makes me really excited to see how, you know, dear NICU Mama continues to support and provide
Aisha: this like,
Ashley: mm-Hmm.
Aisha: Um, [00:10:00] and
Aisha: it's, it's just such,
Aisha: you know, I was talking to Andy the other night about, you know, dear NICU mama and saying like, there really isn't anything
Aisha: that. It compares to that, to what Dear NICU Mama is doing right now is just literally providing someone that understands and sees you for what you are going through. And I think even in this, um, episode that we're about to listen to, um, that's so evident, um, to that, um, being seen in this journey. Um. And feeling like you're not alone and that someone else out there in the world understands exactly what you're
Aisha: going through, um,
Aisha: is so essential.
Ashley: Yeah.
Aisha: And so it's just really, really incredible to know that, you
Aisha: know, dear NICU Mama
Aisha: has,
Aisha: you know, because of the [00:11:00] generosity of so many, the ability to continue to
Aisha: do this
Ashley: Yeah. Absolutely. Well, and that was one of the reasons
Ashley: that
Ashley: you'll hear, um, in the episode, but Tyler wanted to partner with your NICU mama this year. Was, he was like, six years ago we didn't have this. And he's like, it would've changed everything to have had something like this. And so he's like, we wanna, you know, help make that happen for future parents and for current NICU families.
Ashley: And so. It was just one of the things I kept hearing on giving Hearts, Day from, from donors was just through Niki. Mama is what I wish I would've had, and I want to see it keep moving forward. And, um, just the ability to see all of the donations that came in, in honor of. Other NICU families or NICU babies or you know, it's just the NICU connects so many of us, whether we, you
Ashley: know, know them firsthand or not.
Ashley: I mean, there's just this like web of people that are here because of a NICU journey or NICU [00:12:00] experience, and so. Yeah, we truly could not do this work without your generosity, and it really means everything to us. Um, that video of me crying is like, not unusual, like I, anytime I see a
Ashley: donation,
Ashley: like it just really,
Ashley: it blows my,
Aisha: Pretty sure you cried in this episode
Ashley: It did, yes.
Ashley: It just, every time I have the chance to
Ashley: just
Ashley: see the, the, support that Dear NICU. It will never not, It
Ashley: will never,
Ashley: cease to ama, not
Ashley: cease to amaze me. How
Ashley: do I say that? It will just forever
Ashley: amaze me and blow my mind and I'm just
Ashley: so, so grateful and I'm so excited
Ashley: for what 2024 will hold and we're just starting it off on such a strong foot and I'm just really excited.
Ashley: So thank you to each and every one of you who have donated in the past and who donated to giving Hearts Day and just really are helping us continue this
Ashley: work and I'm really
Ashley: excited about
Ashley: it.
Aisha: Yes. Well, we hope you enjoy this episode. It's [00:13:00] beautiful. Get your tissue box 'cause you will cry, and we will see you
Aisha: again next week.
Ashley and Aisha: Welcome to the Dear NICU Mama podcast. This podcast is a safe place to connect with other NICU moms by listening to interviews with trauma-informed medical and maternal mental health experts, remarkable stories from the NICU and Intentional Roundtable conversations. Our hope is that you feel like you're sitting across the table from another NICU sister and feel seen and validated in your experience.
Ashley and Aisha: No matter where you are on your healing journey, this podcast is here to remind you that you are not alone. Welcome to the sisterhood.
Ashley: Tonight is a special night. My name is Ashley Ham. I am the co-founder and executive director of the nonprofit. Dear NICU mama, and one of our programs and services is the Dear NICU Mama podcast. And the beauty of the podcast is that a NICU mom can listen to that podcast in or out of the NICU a lot of our community members listen to the [00:14:00] podcast to and from the NICU if they're commuting at bedside with their baby. And so, um, we're gonna be able to share this on the podcast as well. So, um, this is really fun to be able to kind of tie in this live event with one of our existing programs and services.
Ashley: Um, I work here at Thunder Coffee almost every day. It's my home away from home. No, I just, I'm not that cool. No. I just sit in that corner there by the plug-in and I just plug away on my computer. But But one day Tyler walked in wearing a Thrivant shirt and told me about his new career and how they get to partner with nonprofits all over the US and Tyler and I and Carrie go way back because we have been friends since college and now we're parents with like
Ashley: jobs and stuff,
Ashley: which is crazy real adults.
Ashley: Um, but we kind of came up with this podcast idea, um, as not only a way to raise awareness, but to also give you guys the opportunity to hear a NICU story of close and personal. And if it's something that you haven't walked through, oftentimes getting to hear it from the couple themselves is a really great way to just learn about what it's like to be a NICU parent.
Ashley: And so I wanna thank Thrivent for being today's sponsor. Thrivent is a [00:15:00] Fortune 500 diversified financial services organization that provides advice, investments, insurance, banking, and generosity. So people can make the most of all they've been given. Today we'll hear from Tyler, a financial associate at Thrivent, who is a personal connection to today's event.
Ashley: So thank you guys for being a part of this. Tyler, do you wanna say anything else before we hop in?
Tyler: You pretty much said it all. Ash. Okay. Yeah, we're just happy to do this. It's, uh, ever since our, our journey started in the NICU, we really wanted to, you know, speak to people who have been through it and, and offer some hope and, and we're just really excited to, to be a part of this.
Tyler: So thanks for having us. Oh my
Ashley: gosh, I'm so excited. Well, and our story goes not only full circle because we knew each other in college, but when our son's, um, anatomy scan at twenty-four weeks showed that he had a heart defect, they started to talk to us about moving to the city's and preparing for open heart surgery following his delivery.
Ashley: And I remember when you guys posted about Jett's journey, and I remember being like, whoa, I [00:16:00] didn't even know that could happen. First of all, that they could operate on such a tiny baby. But then I was like, okay, I know these people that have gone through this. And so I remember messaging you on Facebook and being like, Hey, we might need heart surgery.
Ashley: How do I do this? And you guys were so sweet and encouraging and just so hope-filled of, yes, this will be hard, but you can do this. We are here to support you. And so now to be doing this interview and to hear more of the intricate details of your journey is really, really an honor. So. Let's start at the very beginning.
Ashley: So when did you guys find out you were pregnant with Jett? 'cause he's your firstborn. And how was your pregnancy overall? Carrie, do you wanna start? I will. Okay. Yeah.
Carrie: So, uh, we found out that I was pregnant October, 2016. So I was about five weeks pregnant at that time. Um, I had my first OB appointment 10 weeks in, and it was normal leading up to that point.[00:17:00]
Carrie: At 17 weeks, an OB appointment. We did a quad screening and there were abnormal findings on the co quad screening so that, that, um, there was an elevated risk for Down syndrome. So from that point, they sent us to genetic counseling and we talked with them, um, and they recommended that we go through a level two ultrasound.
Carrie: So about. In 20 weeks into the pregnancy, we did the ultrasound. And this is looking at, um, giving a full evaluation of fetal growth and anatomy, and they can detect major structural birth defects at that time, like Mm-Hmm. Um, as you know, Ashley, almost too much. Yep. Too much at that time. This is the size of their
Ashley: kidneys, and
Carrie: you're like, thank you.
Carrie: Yeah. So, um, there were cardiac findings at that point. There was, um, it was difficult for them to see the left outflow track in the imaging. So there [00:18:00] was potential for, um, the transposition of the Great Arteries diagnosis, which we got later. So they referred us to pediatric cardiology. And at that point in the pregnancy, you know, you, you just know things are not normal.
Carrie: Mm-Hmm. At that point. So, um, at 24 weeks we met with pediatric cardiology. We had a fetal echo. Cardiogram. Um, and then got Jet, got the diagnosis of transposition of the great arteries with a ventricular septal defect. Um, and from there you want to say something, add something?
Tyler: Yes. TGA, transposition of the great arteries.
Tyler: People are probably like, what? Um, or you're not like, what? Because you are dealing with it right now in the NICU. And so hopefully this, you know, gives you some hope. Um, as we talk about our story, um, our son's doing great right now. We'll get to that, but [00:19:00] I just wanted to throw that out there right away in the beginning.
Tyler: Um, transposition of the Great Arteries in a nutshell, your aorta and your pulmonary artery are actually reversed. And, um, so basically your unoxygenated blood continues to not get oxygen and you end up, uh, turning in like they call it blue baby, um, and suffocating kind of from the inside, which is. A very scary thing to hear as a brand new parent in, in the hospital, uh, for the first time.
Tyler: Um, it's like you are in a dream and, and you're just, yeah. Very, very shocked. But that's what it is. I just wanted to say what it was. Yeah, thank you. Because it sounds like a crazy transposition. What? It's just your two main arteries are reversed and, uh, yeah, that's what that is.
Carrie: Yeah. So we got that diagnosis and then, um, continued following with maternal fetal medicine.
Carrie: We had a plan delivery in Minneapolis, so [00:20:00] we needed to deliver at a surgical hospital. So that was the plan. Um, we were planning to relocate at thirty-six weeks just so we could be there when the time came. And at thirty-four weeks, we, I was going in for routine. Stress tests. And, um, at that point the heart rate dropped at in one of the stress tests.
Carrie: So we had to, I had to stay overnight. We stayed overnight at the hospital and it in Fargo in Fargo. It dropped again in the night. And then, um, we got life-flighted to Minneapolis and spent the night again there. And we relocated early. Our parents and family and, um, friends all helped us get that sorted out.
Carrie: So some uncertainties and unpredictability with having to relocate a little earlier than expected, but we, we did know that going into [00:21:00] it. Um,
Ashley: can I say something? Yeah, sorry to interrupt. I do just want to, for somebody who hasn't gone through what we call a high-risk pregnancy. Um, it's hard to sometimes grasp just how many appointments you have so many appointments.
Ashley: So can you guys talk, not to backtrack, but can you guys talk just a little bit about like what your schedule looked like because now it wasn't just like, oh, we'll check baby in X amount of weeks. I mean, I'm sure there was multiple ultrasounds and appointments and I remember when my son had like his first cardio ultrasound in the womb.
Ashley: She was like, you're not gonna get the fun pictures at this one. This one's just pictures of the heart. And I was like, so can you tell us a little bit just about, you know, what your high risk pregnancy looked like? Just from like a simple scheduling standpoint? 'cause I think sometimes until you've walked through it, you're like, oh my gosh, that was so many appointments.
Ashley: And just leading up to delivery too. Yeah.
Carrie: Uh, we had those first few appointments in Minneapolis Okay. With. Where we were planning to [00:22:00] deliver. And then following in Fargo, I had weekly appointments from Thirty-two weeks on, so a couple, couple weeks of just those regular weekly visits. So it, it did get to be several different appointments.
Carrie: Do you have anything to add
Tyler: to that? Yeah, it was just very kind of confusing to keep your, just to stay on track, right. It was, uh, the regular doctor and then it was the cardiologist and then it was, um, Maternal fetal medicine and then it was, we're talking to someone down in the cities and then, then we're talking to a Yeah.
Tyler: Social worker and which we can go into a little bit more. But um, yeah, we would always just come outta those meetings, just very like a whirlwind, like, okay, what just happened? We had notebooks filled up with things and questions and we're Googling, which I don't recommend. Don't just go home and start Googling 'cause you'll get some crazy stuff.
Tyler: But, um, that's just the natural response, trying to understand what's happening and. What did we do wrong? And um, and uh, [00:23:00] so yeah, it was, it's just, it's a whirlwind to try to keep it all straight. Absolutely.
Ashley: Well, and I wonder too, Carrie, if you would be willing to speak to the experience of being the mom, carrying the baby.
Ashley: And I think the unique thing when, you know, before delivery that there may be complications. It's hard because you, you can't fix it yet, you know, and there's kind of this waiting period where they're with you and they're safe because they're with you, and yet you can't magically go in and fix it. And so how did you process through pregnancy and really just like, not let fear or anxiety take over 'cause it's really easy to let that happen.
Ashley: But how did you process and navigate just the feelings of wanting to protect your baby and, and having to wait until that surgery to really fix what you knew wasn't right.
Carrie: I think it helped so much to just to be open with other people about what I was going through. So I had a great, you know, work family and, [00:24:00] and my family and friends, just telling them what you're experiencing so that you don't have to sit in that stress and that fear and that anxiety on your own and so much of it is out of your control.
Carrie: Yeah, I don't know how to do heart surgery, so what am I gonna do with it anyways? So I think just, you know, you do as much as you can as a pregnant mother to just keep yourself healthy and try to take good care of yourself. Go to the appointments and ask the right questions and rely on others to help get you through.
Carrie: And just trust that God will, um, be in control of all of it and that we really can't fix it as much as we want to as mothers. 'cause you know, you feel you can. Have that protective shield over your child at all times, but in these types of situations, you really, you really can't. Yeah. Yeah,
Ashley: absolutely. No, thank you so much for sharing that.
Ashley: And not to put you on the spot and both of you on the spot. Again, I know we're kind of deviating [00:25:00] from our notes, but, uh, there may be people here who, um, haven't walked the NICU, but maybe have someone in their life who has or, um, you know, want to support people who walk through the NICU. So I know you mentioned your work family and your family were really essential in helping you just navigate your pregnancy.
Ashley: So, you know, are there, like, is there a tangible way that they showed up for you that made a difference just in how you were able to navigate the pregnancy and prepare for his delivery? Was there anything practical or was it just their presence that made a difference? Like, I, I would love to know just how people showed up for you in kind of that unknown period.
Carrie: People showed up in so many ways for us that it was really like, I, I can't thank them enough for all the generosity and support that we had during that season of life. Just, um, when we found out that Jett had transposition of the great arteries and that we would need to relocate and all that stuff, I did [00:26:00] share it on Facebook, kind of a longer post about what we were going through.
Carrie: And I feel like just by sharing that, so many people commented and I had lots of text messages. Eventually our sisters help set up a GoFundMe for us so that people could donate in that way. And that made such a big impact, especially with both of us not being able to work for several weeks. Yeah. At a time.
Carrie: And, um, people giving gift cards and gift baskets and meals and, um. Um, our, my baby shower was canceled and so people sending gifts in the mail and that sort of thing. It was just, it was all, um, overwhelmingly supportive. And I had mothers that reached out to me at that time on Messenger just telling me, like, my son went through heart surgery too, and this was my experience and just wanna know that I'm here for you.
Carrie: And, [00:27:00] um, the mother who did that, she sent a little gift when we were in the NICU. And I just, I, I think that's so special when you can reach out to mothers who are going through it and if you have had that experience to connect and just tell them that if they ever want to talk things through that you're there.
Carrie: Yeah. So that's, that's really helpful. Do you have anything to say? No, I'm good. Perfect. Sorry to go off our questions a little bit. Um, so obviously when the heart diagnosis came to me, you knew that the NICU would be a part of your story, but had you known anybody else that had walked through the NICU? I mean, was this like a completely new word to you?
Ashley: Like what did you know of the NICU prior to his stay? I know, sorry.
Carrie: I have heard of the NICU before that or I had just, um, in working in the medical field, like you work with different families who had gone through that sort of thing too, so, or, um, children, yeah. Who were born prematurely, but it was mostly premature children that I would think about.
Carrie: And I did have a cousin who had gone through it and a [00:28:00] couple family friends that had gone through a co-workers, but other were otherwise, um. I wasn't really prepared for it myself or you don't anticipate it until you do get that news that this is gonna be a part of your motherhood journey.
Tyler: Yeah, absolutely.
Tyler: And it was just very surreal because it being the first time that we're, we were parents, it seemed like, you know, what is a normal pregnancy like? So we didn't really have anything to compare it to. Right. And uh, so we were open to anything the doctors were saying and any suggestions. Um, but yeah, very, uh, very surreal.
Tyler: Yeah, absolutely.
Ashley: So as you got closer to his delivery and moved to the cities and got ready, can you tell us just a little bit about his arrival into the world and his entrance into the world?
Tyler: It was wild. Um, you know, uh, I'm, I'm there by her side and there's [00:29:00] about 25 to 35 people in the, in the delivery room all staring at us. Um, uh, probably not that many. Maybe I'm exaggerating there. It felt like a ton. Yeah. And, uh, no, it, you know, it's, uh, the, the U of m right. Children's hospital. So there's students there and so there's young, young dudes and I remember, uh, me in a, I don't know, maybe he was 20, a student helping hold Carrie's legs and, uh, he was looking at me in the eyes like, you got this man, like, you're good.
Tyler: And he is just this little punk and he was, you know, so awesome. Um, and, and such a blessing and, and, uh, so professional, but so young. And, um, and it, you know, the baby baby shows up and. And, you know, everything, we clean 'em up and then a new wave of people come running in the, in the room from hiding behind a curtain like the, [00:30:00] the heart team.
Tyler: I, I think they were. And grabbed them and wheeled them out the room. And Carrie and I were looked at each other like, oh, there goes our kid, I don't really know what we're gonna do now. Carrie's like, follow, like, go with, I'm like, okay. So I'm just like awkwardly following this team of people. And then they did the, it's like a screening where they, they give you your baby a score.
Tyler: I'm not sure what it's called. Yeah, the Apgar. Apgar. Thank you. I think I, yeah, something like that. Something like that. And uh, they're like, you know, you're good to go back with mom, whatever. So, okay. Went back and we just sat there babyless and it, it was, uh, very hard and very scary. 'cause you don't know.
Tyler: Okay. Is he okay? Can he, you know, his heart, his anatomy is all different and he's outside of his. His mom and on his own. And, uh, so they, you know, to stabilize him. Um, and maybe we can get into it, but they do a, a quick procedure, um, what's it called again? [00:31:00] The Rash Kin, thank you. The Rash Kin procedure where they, they, uh, allow the blood to mix in his heart, um, without the, the arteries being changed over.
Tyler: And once they d did that, they told us he's stable and he, and he can be like this, obviously he's not a hundred percent, but he can be like this for, you know, as long as, as we think we, he needs to be. Um, and even with the doctor saying that, we're still very scared and, and shocked and, and, you know, didn't know what to expect.
Tyler: So, um, yeah, that, that's what the delivery was like from my perspective. Um, I dunno if you wanna add. First child. So you can kind of imagine what delivering your first child is like. You don't know what to expect with that experience. But, um, overall it was a good delivery. It was not super intense labor for long, so that was like best case scenario.
Carrie: And [00:32:00] it, like he was saying, a lot of people there with me right away, so I felt like coached through that delivery so well. And then suddenly everyone's leaving, your baby's leaving and you're sitting there, you know, because you're still getting the medical attention too at that point. So, um, that part I felt like was just a, a challenge in, in, um, trying to just recover.
Carrie: Yep. And, but at the same time, being so. Concerned about what's happening with your child and where is he? How, how is he doing? Yeah. But you still have to take care of your own needs as well. So that, that was my perspective. Yeah. Absolutely. Yeah. I don't think even, even when you know that your baby will be taken to the NICU, there's nothing that prepares you for that moment, even when you know that that's gonna be a part of your story.
Ashley: Seeing your baby whisked away from you [00:33:00] is you can't prepare your heart for that. And it's, I think for NICU parents, it's kind of this like life-altering moment of just like, okay, I trust, like I have done what I can do, and now I just surrender everything else. And it's a very surreal, surreal moment. Um, and so too.
Ashley: After he was born and he had the procedure, then how soon after were you guys able to meet him and hold him or touch him? Like how, how many hours after delivery until you had that chance to, to meet your son officially? I
Carrie: don't
Tyler: remember. It was probably like a couple hours. Yeah. Um, maybe two. Um, it seemed like an eternity, um, obviously.
Tyler: Um, and so it could have been 30 seconds, I'm not sure, but I'm gonna say two hours. Yeah. Um, and once he came back into the room, actually he didn't, we didn't we go to him? Yeah. We were able, we weren't able to hold him. He was intubated and he looked kind of like a [00:34:00] mess and it was very hard, but, you know, his face is all squished up and we're just like, wow.
Tyler: There's our kid. Like what do we do? Um, and there's a, I remember very vividly seeing the oxygen monitor being at like 60 something and I was just like, that should say 100. I'm pretty sure. The O-II monitor, whatever. And, and they were like, yep, but six Ds is okay for now. You know? And obviously he was, we're gonna shoot for 100 after the surgery and all that.
Tyler: And, um, they, yeah. So I don't, should we, should I start talking about what happened kind of after, after that? So, um, we are in the, the NICU with our baby, uh, relocated. Um, staying in a boarding room for a little bit, but then they finally got us, we were in a hotel, in a hotel for a long time, but, oh yeah, there's a whole thing before this, we were a month down, we were down there for a month before all of this happened, waiting for the baby and wanting the baby to show up so we could start, you know, operating, they could start the operation and get 'em all fixed up and, um, yeah, just two parents relocated [00:35:00] by themselves.
Tyler: Um, it was kind of a special bonding moment for us, you know, just because it wasn't in our hands, it was in God's hands and. And we literally just had to sit and, and wait for Jett to show up. And um, and when he did kind of the plan just went And, um, I remember, you know, visiting him, visiting him, visiting him, wondering, okay, what's happening?
Tyler: What's going on? And uh, finally they um, I think it was like a week or so, went by maybe a week and a half. Mm-Hmm. And I'm like thinking they need to operate soon. Yeah. Like what's going on? Didn't have a date yet. Yeah. We didn't know the date of the operation and we're like, something doesn't feel right.
Tyler: They should have this planned out. We were down here a month before they knew this, what, three, four weeks in or a month in or whatever. A couple months. I'm not sure. Anyways, um, they called us in into a meeting. I dunno who did one of the cardiologists did, the cardiologist. And, uh, so Carrie and I, and then our parents were actually there and I'm like, this [00:36:00] something seems off.
Tyler: Why are we having this like ballroom meeting here? When our son's out there, like waiting for surgery, and uh, the cardiologist said, unfortunately, and I was, our hearts dropped, right? Um, and they said, uh, we can't perform the surgery like planned, um, at this hospital. Um, and, and we were like, what is wrong?
Tyler: And, and it wasn't anything with our son, thankfully. It was, um, and I shouldn't say thankfully because it's probably a tragic thing and I don't know this story, this side of the story, but the surgeon was having some complications in his family and so he was out for, and we didn't know how long. So they said, you can, you can sit and wait, jet stable enough.
Tyler: You can sit and wait here, um, for the surgeon to come back and perform the surgery. Or we can life lights you down to Mayo and probably get the surgery done within a day or two. And we were like, it [00:37:00] wasn't an easy decision by any means, but we picked go to Mayo. 'cause we didn't wanna sit and wait for an unforeseen amount of time.
Tyler: Right. Um, and so they threw Jett in the plane, threw him, they put him in a plane. They, they threw Jett in the jet. Wow. Look at that. Maybe that's where we got the name. Yeah. Uh, yeah. So he was in there, you know, in a NICU bubble type of type of deal and her and I got in our Chevy Tahoe and drove to Mayo.
Tyler: And uh, at that point, you know, as new parents, zero sleep was had and you know, Carrie, oh, I'll nap on the trip down. Yeah, right. Just wired. Um, so we get down there, everyone makes it there safely. Um, and then we meet the, the actual surgeon. Dr. Saeed and amazing, amazing dude. Um, actually got his surgical doctorate.
Tyler: Over in Egypt. Right. And it took him a very long time to do that. And then he moved to America to do surgery and they said, Nope, you gotta do it all over again. So he got his doctorate again in America. And, and he's like as old as me, and I'm like, who are you? You're a superhero. Um, and I met him and he's like, yep, I, I, and, and then finally I was like, have you done this before?
Tyler: Like, have you ever done this? And he's like, yeah, four times. And I'm like, only four times in the last 20 years. And he is like, no, four times this week or this month, sorry, four times this month. And I'm like, oh, okay. So you know what you're doing? He's like, yeah. And he's just so confident. And so I just, yeah, if, if you ever get a chance to meet that guy, give him a hug for me in incredible.
Tyler: Um, so once we got down there, um, they said, you know, he gave us the lowdown. He explained what he was gonna do, and then literally like the next day, I think. He was like, we, we were prepped and ready to go for surgery. And I was like, wow. Like that seems way too fast. 'cause we had just been waiting for two weeks and now all of a sudden he's in the operating room.
Tyler: Um, so yeah. I love it. I dunno where I was going with that. No, it was great. Um, so Carrie, what was it like for you to send Jett off to surgery? Because again, it's kind of one of those things that you've [00:38:00] been planning for and preparing for, but now you see their face, you see them and you're like, wait, now I have to send you off to surgery.
Ashley: Like, this feels really real. So can you just tell us a little bit about what it was like to send him off? Mm-Hmm.
Carrie: You're not really ready for it, you know that it's happening, but it just comes up and you have to send him off. You know, you just, it's, it's surreal. At that point in time, I. Think I started kind of my own mental health journey. I really, like he said, was pretty sleep deprived and struggling with that piece.
Carrie: So I had to take care of myself at that time too. So I think that now looking back at it, I wish that's something that I could have prevented earlier, but I was a little bit removed at that time just because I was, um, trying to take care of my mental health and couldn't really [00:39:00] truly be there. I was there shortly after, like, once I got more rest and was feeling mentally more stable and ready.
Carrie: But at that point I had to, um, take care of that. And so for me that I was there but I wasn't at the same time. Yeah. And that was really hard. Yeah. So Tyler really stepped up and at that point in time and, um, I. Just made things work with communicating with the doctors and me and medical staff and family.
Carrie: And so that's where I was at at that point in time.
Tyler: Yeah, a true warrior for real. Um, I can't imagine what was going on in her mind at the time, but, you know, once she was able to get a little bit of rest, which wasn't enough at all, but a little bit, she was able to yeah. Come to the NICU at, at, uh, the Mayo NICU and do skin-to-skin and hold him.
Tyler: And we prayed and we read 'em books and, and yeah, we were both out of it. Um, and we were just like, okay, like it seems like they know what they're doing. And, uh, they took 'em to surgery and, you know, we, we waited and I, I think it was like. I don't know. I don't know exactly. I wanna say like eight hours. It felt like maybe six to eight hours of surgery, which was longer than it was supposed to, supposed to take.
Tyler: Um, and after the fact, you know, there was like a phone call or I could call every now and then and, and ask what, you know, they would give updates, everything's fine, everything's fine. And then I would update Carrie and everything's fine. And, and, uh, then, um, they said, okay, he's done with surgery. And I remember on the phone and I was just like, it, it's just they do it so much there.
Tyler: Like they're such professionals and so, um, I don't wanna say removed emotionally, but like, it's their c it's their job and their duty to fix these people that come in and, and that's their main focus. And so they're very like, you know, uh, saving a life today. Yeah. Just saving another life. And so I'm on the phone and, and she goes, you know, surgery is done.
Tyler: And I was like, okay. She's like, so you can go to room, whatever, and one-twenty and, and wait. And I was like, is my son alive? And she's like, oh yes, he's doing great. And I'm like, thank you. Like, wow, I appreciate the update. And then we went to the room and um, Jet wasn't there yet, but the surgeon came in and he's like, everything, everything great, everything went great.
Tyler: You know, a little bit of broken English, I don't remember. And uh, I was like, okay. And, and I was like, can I give you a hug? And he, you know, this big wig surgeon, you know, saves lives every day for the last 20 years. Sure. He says, so I stand up, I'm this big awkward six-four guy, and he's about five-four. And I hug him and my mom was in the corner and she snapped a picture.
Tyler: And so maybe I'll share that with you. But, um, I didn't care. I just felt like I need to do something. Sweet moment. Yeah. And, uh, you know, he saved our son's life, our, our son's life. And, um. Yeah. Now, now the healing process starts. Yeah.
Ashley: Did you wanna say something? Okay. Well I do wanna um, quick backtrack to something that you said, Kerry about needing to take care of yourself.
Ashley: And I want to just commend you for that. Um, as moms, I, I mean, we all know that we will put our children before ourselves every day, every minute. Um, and also you saying that out loud removes the stigma and the shame for other NICU mothers that needed to prioritize themselves in a moment that they may be wanted to be present for, but in order to [00:40:00] be present for their baby post-surgery needed to take care of themselves.
Ashley: And I'm really, really proud of you 'cause it took a lot of courage. To step back and say, in order for me to show up for the Jet for Jet in the way that he needs, I need to be rested. I need to be okay. And I'm really proud of you for that. That takes immense amount of courage. And for any other NICU moms listening to this too, know that there's no shame in needing to rest, in needing to care for yourself.
Ashley: In fact, it is essential. And also to remember that you just gave birth, like that's a big deal. Like our bodies just went through this like transformation and now like we're navigating this like very traumatic life experience. And so to really just commend you for that and to really see that as like an act of courage on your part and just, I'm really, really proud of you.
Ashley: Thank you. So, um, to go back to where we left off then [00:41:00] Tyler and Carrie. So he had the surgery, you get the, he made it, we did it. And you hug the surgeon and what happens next? What did his stay look like following that and how did you begin to really walk through kind of what would maybe be like phase two, just the healing part of his journey?
Ashley: Do you
Carrie: wanna go next? Sure.
Tyler: Backtrack a little bit. I feel, uh, our son's name is Jett. And when you said you need to take care of yourself first, you know when the oxygen masks fall down and they say, put that on before you help your kid. In my head I'm like, what? No, I'm gonna put it on my kid first. But no, you really do need to be there and you need to take care of yourself before you can take care of others in that situation.
Tyler: And so that's exactly what you did and that's what you needed to do. And it was not easy, but you, we, you know, that's what we needed to do. And you did it and, and you're a stronger mom 'cause of that. Thank you. Um, you know, surgery is done. We, we go up the elevator,
Carrie: they left his chest open for
Tyler: a few days after the surgery.
Tyler: Yeah. We go up there into the room and they're like, okay, not to shock you, but we needed to leave his incision open. Do you wanna talk about that?
Carrie: Just looking at that, it's tape over the chest. You can see the, see the heart, and that is the wildest thing you'll ever see in your life.
Tyler: You see that little, it's like an almond little heart beating, just knowing that that heart wasn't beating a little bit ago and a machine was running.
Tyler: Um, and that someone very strategically performed surgery on that little, tiny heart. And, uh, [00:42:00] you know, it's, it's amazing. And, and he's, you know, they have to leave it open so the, the swelling and all that can happen and, and that didn't make sense to us. And they're like, whoa, close it. Like, what's happening?
Tyler: Um, finally after some of the. Swelling went down, they were able to, to close it, um, and, uh, stitch it up and everything. And, but yeah, there's like wires in his chest and I don't, I don't know if you wanna go into that, but just his, I remember thinking, um, like, what is he gonna be like after this? Uh, and is he gonna be, uh, typically developing?
Tyler: Is there gonna be issues? And one of the nurses maybe, or maybe the surgeon said, his heart's more efficient than yours now. And I was like, huh, that's a way to think of it. He's like, it's literally like perfect. Like I made it exactly how it needs to be, you know, so it might be even more efficient than your anatomy.
Tyler: And I'm like, thank you. That, that, you know, puts it into perspective and, uh, right. You know, he, a doctor literally aligned his heart the way that it, you know, is designed to be. And thank God for that.
Carrie: Yeah, in his healing it, it really took him quite a while to learn how to eat without his feeding tube. And so getting that feeding part down, I feel like is what took a really long time.
Carrie: It was nice to see him coming out of, you know, being so sedated and stuff, like getting some of them rid of some of the medications and to see him wake up from that and start interacting with us, looking at us and doing the feedings and stuff like that. That was, I think, the best part of it all, all during this time we had a place to stay to, which was really nice.
Carrie: And so, um, having that stability of [00:43:00] just now, now we're here, we're doing this, we're not moving around or anything really helped me too in healing and, um, getting some kind of routine and figuring out how to take better care of sleep and that sort of thing. So, um.
Tyler: Yeah, I was gonna say a shout out Ronald McDonald house.
Tyler: Yeah, there was a long waiting list, obviously in Mayo at Mayo Clinic. There's thousands of families trying and, and we finally got in there and it was, yes, it's a blessing to be a part of that. And, um, yeah, just there was about from the hospital, a block from the hospital, so we would go on a little walk every morning to the hospital.
Tyler: But like you said, seeing him kind of come out of it a little bit. And I remember there being probably 30 medicine pumps and tubes going into him. And, and I knew things were moving in the right direction. 'cause every so often, and one would be gone and then there'd be 28 and then there's 25 medicine pumps and then there's 20 medicine pumps and it's like, I think we're getting, getting better.
Tyler: Right? And then a setback, right? Oh, we gotta, you know, his oxygen levels are low, we gotta put a tube next to him. He's not intubated, but there's a oxygen next to him. And, and so yeah, that healing process, you know, he had a tube going into his. In his, into his stomach, through his nose. And, uh, he really struggled to eat and couldn't keep anything down.
Tyler: And I remember one day I was just like, can we just try take the tube out? I don't know, maybe it's like choking him. And, and we, they're like, ah, maybe, I don't know. It might not work. And and they did. And, and it didn't work right away. And then it eventually started to work. He started to keep his food down and, um, and which is a blessing that, you know, that was kind of a chance per chance thing.
Tyler: It wasn't like the norm, but I just, I don't know, maybe we should try it. And, and that, that was really helpful for him to do that. And, and once he started to keep food down and, and the, the pumps were going away, they started talking about, kind of discharging us and that was really scary. There's twenty-four, seven care for the last three months, basically.
Tyler: Not 3, 2 36 days. It felt like three years. Yeah. And now they're gonna send us home with this baby. And I'm not a doctor. And you're not a doctor and they're giving us these medications and I ordered a bunch of syringes on Amazon to feed him this prostaglandin medication or something to help with his fluids and all.
Tyler: We're reading these wound care documents and he had a big band-aid on his chest and new parents, you know, very nervous, you know, no one can hold their baby, no one can do anything. Right. Which, which is pretty normal I hope. I think, I don't know, especially with a heart surgery baby. But, uh, we left his bandage on for way too long.
Tyler: Dunno if you wanna talk about that. I don't. Okay. So we didn't know. We were supposed to take it off after, like a couple days and it was on for a very long time. Probably a solid, it was probably pretty itchy. Poor little guy. But, uh, no one really updated us. They kind of forgets about that, right? We're just like, yeah.
Tyler: And, and then I remember I called once and we were like, yeah, the band-Aid Band-Aid Bandage is starting to kind of come off a little bit. They're like, the band-Aid is still on his chest. And we're like, yeah, but Bathing's kind of, you know, it's kind of tricky. They're like, that should have been off a while ago.
Tyler: And we're like, oh, sorry. And we pulled the band-aid off and then you can actually see the scar. And it was another like, Shocking moment and like, wow.
Carrie: You just think it's so delicate that, you know, you get 'em home, you don't wanna do anything Yeah. To really mess it up and yeah, you just wanna do your best.
Carrie: And it, it is tricky when you go from having that Twenty-four hour care to, then suddenly it's like, well, okay, he's gonna sleep in his crib tonight and what I'm, I'm gonna do it all now. Yep. So it's, it's different. So yeah, we, we missed. A few steps along the way, like the bandage, but we know now. Yes. You know now.
Ashley: Well, and how, like how else would you know too? It's not like, yeah. That wasn't the first detail. Right. Absolutely. Well and um, in the spirit of Valentine's Day coming up to, um, I keep switching my questions you guys, but it's not often. We also get to have the NICU dad or NICU partner on the [00:44:00] podcast with the mom.
Ashley: And so I'd love to know too, um, you know how, you know, you talked about like it was kind of this intimate special time leading up to his arrival 'cause you were together in the cities and kind of removed from like your central community and, and people and too in the NICU. Was there anything special that you guys did together to just like make it your own?
Ashley: I know for Ryan and I, it was midnight waffles. We would watch, uh, modern Family doing kangaroo care until like 1130, and then we'd walk down to the cafeteria and have midnight waffles. But that was like our little routine. So did you guys have any, just ways that you continued to connect with each other and really, you know, keep you guys connected throughout it all?
Ashley: I got one.
Tyler: So in 2014, I brought Carrie. We were dating, I brought her to a concert in the, in the cities. And, uh, I was like, I'm gonna ask this girl to marry me. And so after the concert, we went out on the Stone Arch Bridge in the cities and it, uh, my plans completely crashed because the skylight shut off.
Tyler: It was way too late, it was raining. I said, let's get outta the car and check out the bridge. And she said, what? And, uh, so we awkwardly got outta the bridge, outta the car. We ran onto the bridge and I was recording it in my, on my, uh, phone, my pocket. And I went down to one knee and asked her to marry me.
Tyler: And Yes, said, oh my gosh. Fast forward, uh, we're down, you know, waiting for baby to show up. And where [00:45:00] are we? We're on that same bridge. Yeah. Holding hands, walking. Uh, and so that was a really special moment. And we took pictures and just like, wow, here, you know, here we are now married and in the middle of a storm, but you know, this is where we got engaged.
Tyler: So, you know, we went on a lot of walks, um, on that bridge, and there's like some trails around that area, uh, by the U of M. Do you wanna tell the science science museum one or When I went into labor, yeah. Okay. I'll tell it. So we're like, come on baby. And people are like, we'll go for walks, you know, and it's like, okay.
Tyler: And we've been down in the cities for a while and I'm bored and uh, I'm like, don't they have the science museum or something down here? And she's like, yeah. And she's like, I don't feel that great today. Got a donation for
Carrie: it
Tyler: actually to, yeah. Someone gave us a donation for that is, yeah. It's a blur. Yeah, it is a blur actually.
Tyler: Um, especially six years later. Uh, but anyways, um, and so I'm like, let's go to the science museum. And she's like, okay. Very, very pregnant. And I'm like, you know, like a kid in a candy store. We're walking around and she's behind me, kind of hobbling a little bit, and I'm looking at all the things and Wow, this is great.
Tyler: And she's like, Tyler, I'm not feeling the best. And I'm like, oh, if, you know, look at it's, it's Sully from Monsters Inc. Look at how they did the CGI. And uh, and she's like, I think I'm gonna have the baby. And I'm like, really? Like, you know, having such a good day. I was about to do like this basketball thing where they film you in slow motion and then I was like, fine.
Tyler: And then drove her to the, no, we went back to the hotel and she started timing her contractions or whatever, and she's like, yep. And I'm like, yep. And so, um. That was one of the fun things we did is go to the science museum, but literally on the day he was born. So I wish it was like the first day we were down there when things were a little slower, but, um, the more mundane things.
Tyler: Yeah. Just sitting in the, in the, uh, hotel room. We had continental breakfast every single morning ham and scrambled eggs and coffee, and we sat at the same table and looked at the traffic driving by and, and it got, you know, that was our little morning routine. And thankfully they had like a washer and dryer there.
Tyler: And so a little bit of normalcy, but also two like twin beds and were just like, you know, pushed the beds together at one point. Did you bring them together? At least? Yeah. Yeah. But you know, you need your space sometimes too, and especially is very pregnant, very warm, very tired. And so it, it worked out. Um, I
Carrie: love it.
Carrie: You're painting me in a beautiful light.
Tyler: Yeah. Yeah. We have a lot of fun together. Yeah. So I love that.
Carrie: It was a good time to just. Uh, have that uninterrupted time together really to, it was like a,
Tyler: a blessing in disguise, kind of just to rekindle our Yeah. Like, yeah, like, you know, we were going through a whirlwind and a storm and, but here we are together, no one else around.
Tyler: Um, I mean, people were sending stuff like crazy, so that was amazing and, and overwhelming and we didn't know what to do with, uh, you know, all the messages. And people are like, come stay with us. Come stay with us. And, you know, wow. Like mid Midwest. Nice. Uh, I, I don't know how to say thank you or yes or no or anything 'cause I don't wanna hurt anyone's feelings.
Tyler: And so we struggled with that. 'cause Minnesota, North Dakota folk. But, um, yeah, just overwhelming, you know, blessings, uh, from all around while we were waiting. I love it.
Ashley: Thanks for sharing that you guys. I know I'm going off script. Um. So one thing we talk about often in this community is when you're in the NICU or going through a very medically complex journey, oftentimes you're in fight-or-flight mode.
Ashley: And so we kind of talk about how a new chapter of the NICU begins when you come home, the healing journey. And so would you guys be willing to elaborate just a little bit on just what healing and processing your journey post NICU looked like and how you began to really, like, we just went through that like, holy cow, like that was a [00:46:00] lot that we just went through.
Ashley: And um, so how did you guys begin to process that and really find the safety to do that?
Carrie: I was thankful that when we got back, I still did have some time left to focus on eternity leave and just spending time at home, taking care of jet and getting to know him and, you know, because he's shared so much Yes.
Carrie: When you're in the hospital and Yes. So that, that part of the healing you're really. The wound's still open. Yep. You're, you're processing, you're trying to, um, take care of your new child. You're trying to take care of yourself. You're trying to get things back in order so that life can begin as a family of three.
Carrie: So, um, just taking it day by day Yeah. I guess was the best way to go about that.
Tyler: Yeah. And I just remember being so at peace and so calm, you know, in our little apartment when we got home and I have a video on my phone that I watch often, and it's [00:47:00] her, and we had a little room for Jet, what is it called, the nursery or whatever.
Tyler: And, uh, and it's such a quiet day and, and the doors kind of shut. And she's in there just like with her eyes closed, rocking jet. And, uh, we're home and I have a little video and, and music is playing and it just was amazing to just, you know, I. Like the storm was over and the, the clouds had lifted and here we are, and she's in the sunny little room rocking in and, and, uh, yeah.
Tyler: So amazing to see her in that, in that light. Right? Absolutely.
Ashley: So then let's, um, as we kind of near the end of the episode too, let's just chat a little bit about how he's thriving today and how he's just the sweetest little boy. You shared a story about like school drop-off and like, just the fact that he's like in kindergarten or, you know, it's just like wild.
Ashley: So how is he doing today and what does his heart monitoring look like now? Do you guys have regular cardiology appointments or, you know, [00:48:00] what does Jett's life look like now?
Carrie: You wouldn't really think of him now as like a child that had gone through all that. Yeah, he's really physically active. He is able to run around with friends and participate in all of the physical activities that you'd want him to be able to do.
Carrie: He loves. Reading and learning, and he's a bit of a nerd and we love that about him. The science Yeah. Tracks.
Ashley: Yeah. You guys
Tyler: will probably go there together. Yeah, we have been back. Yeah.
Carrie: Loves it. Uh, he loves Pokemon playing his Nintendo Switch, fighting with his sister Gwen. He is just, just the greatest kid and he's doing really, really well and he's getting along great.
Carrie: Yeah.
Tyler: Yeah. Just, uh, just a little, little dude. I just love him. Um, he wants to wrestle all the time and, and I often forget he's, you know, wrestling with me so hard and I'm throwing him on the couch and tickling him really hard and then he'll get sweaty and take his shirt off and I'm like, whoa, there's his scar.
Tyler: Yeah, right. Like, am I going too hard at him? And then he comes back and, and so I'm just like, you know, [00:49:00] he's just a typical kid. And, and that was one of our biggest fears is like, what's gonna happen afterwards? Like, I wanted to just meet a family who had a baby with. TGA and maybe six to 10 years afterwards, see what their kid's up to and what can we expect.
Tyler: And, and so my big thing going through all of this was like, if anyone's listening to this, whose kid is like in the midst of all of this, that there is hope and that, that your kid is, you know, is, is gonna be gonna be all right. And, and, uh, he, uh, he or she, um, yeah, just there the doctor kept saying, you know, he's gonna be a typical, typical little boy and there's gonna be no restrictions, but in the back of your mind you're like, yeah, there are, there's gonna be stuff.
Tyler: So every year we go in for a cardiologists appointment and they're always like, things are looking great. Um, they did say, you know, maybe when he's 30 or something, we may have to look at replacing a, one of his, the valves. 'cause they [00:50:00] had to do like a special little procedure, which we didn't really go into.
Tyler: But, um, his anatomy was a little different. And so they. They had to replace one of his valves or do something with it, or take the valve out and put it back in. Anyways, that, like, you're just, I'm just thinking, okay, 30 years from now, a little, a little helicopter Submarine is gonna fly into his, you know, like, and there's gonna be a robot just re you know, I'm just, just saying like, the technology's insane.
Tyler: And, and babies who had this condition back in the, I don't know, seventies or eighties, they did the mustard procedure, which there was, they both put baffles in the, and in the heart and actually like, kind of try to shift the blood to the correct spots and, and it wasn't the best success rates. And, and he was telling us all this and I'm like, oh, great.
Tyler: And then he was like, but now we have new technologies and, and we actually stay on the outside of the heart and we can just, you know, re switch the arteries and, and reattach them. And, uh, there's like a 90 some percent success rate and you [00:51:00] know, you still don't believe 'em. Right. And you're just like, okay.
Tyler: Um. And, and everyone's anatomy is a little different. So they did actually have to go into his heart and he had a VSD, like a hole between the two, and so they had to patch that up. And so a lot of work on that little guy. But, um, yeah, he, I can't get him too excited about basketball yet. Um, but he does love, uh, learning and drawing and wrestling and, um, just a typical little boy.
Tyler: I wanted to do a li take a little video of him being like, hi, I am Jet. Yeah. Uh, but his vocabulary is hilariously way too big for his age. And I dropped him off at kindergarten and I was just like, wow. My kid's in kindergarten. And uh, he gets out of the car and Bye buddy. Love you. Have a good day. And he's like, dad, come on.
Tyler: Like, you know, like looking at me like, this is embarrassing. Yeah. Like, what are you doing? And his backpacks way too heavy for him and he is like falling and he's just this little punk, but he's like, so like, yeah. With it. And uh, just, we're just really proud of him and of the [00:52:00] young, young boy he is. And hopefully the young man, he will become.
Tyler: Yeah. Mm-Hmm. Absolutely. I love it. You guys. Uh, we recently launched a collection, a merchandise collection called, uh, there Is Goodness Ahead. And our whole hope was that this exact message of sometimes when you're in the NICU, all you can see is just like the next 10 minutes in front of you. And it's hard to envision like, what will it look like to drop, break my kid off at kindergarten?
Ashley: Like, is that day like gonna be a reality? And so this message of there is hope, there is goodness ahead. Like there is a world outside the NICU that exists. And so, um, you know, when we connected Tyler at Thunder, you know, one thing that you had mentioned was, you know, six years ago things like, dear NICU Mama weren't a reality yet, or, you know, like this type of peer support.
Ashley: And so, um, you know, it's really, it's really special to just hear of like. How dear NICU mama can step in now in ways that maybe weren't available 6, [00:53:00] 10, 15, 20 years ago. And, um, and like you said, Carrie of being really vulnerable with your village and just saying like, I need help or this is what we're navigating and um, this is like, you know, what we're walking through, we need that support.
Ashley: And so Dear NICU Mama exists to provide that peer support. And so it's really special to have this conversation with you and to think that our journeys were so close to each other. And now my son will be in kindergarten this fall, and I'm like, what is time? It's just crazy. Um, so one kind of thing that we like to end our podcast episodes with is just a word of encouragement that you would offer either a NICU family or um, a NICU family that has a heart diagnosis or is preparing for that surgery moment.
Ashley: So what words of hope would you offer them? I would just tell them that they are so resilient. You'll get through this, it's gonna be difficult, but you have people that wanna support you in this valley [00:54:00] and you'll get through it. You're gonna be stronger coming out of it, and you'll find out things about yourself that you never knew.
Carrie: And there are greater days ahead. Yeah. There's light at the end of the tunnel. That would be my advice. Yeah, exactly what I was gonna say. Um, making it a little, you know, real life here. When, when your kid is, is going through this, you feel like absolute, like the lowest of the low, completely vulnerable.
Tyler: Completely like very, very helpless. Um, you know, we, we have a faith in God and, and that really. Brought it to light, how much we needed that in, in our, in that time. Um, that, you know, our faiths were a huge factor in, in pulling us through. And, you know, and just I think, dear NICU mama, if it [00:55:00] existed back then, I would've been a little bit less anxious to be able to hear, you know, hear stories and listen to listen to the podcast and, and get connected.
Tyler: Um, my thing was like, I was, I didn't really have enough energy to want to talk to people about it. I just wanted to like read or see a video of a family going through it or, or hear a message or, or read a little blurb. And so like, exactly what your nonprofit is doing is, is what I we needed at the time.
Tyler: And, uh, it's such a blessing that we were able to connect six years later and, and get our story out there and, and I just hope at least one person. Going through something, hears this and gets a little nudge of hope.
Ashley and Aisha: Thank you so much for listening to the Dear NICU Umama podcast. If you loved this episode, we'd be so grateful for a review. For more ways to connect with the dear NICU Umama sisterhood, check out the links in the episode description.
