B+ with Krista Gregg

Ashley Lytle on Grief, Hope, and Life With a One-in-a-Million Son

• Bright Sky House • Season 1 • Episode 4

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Ashley Lytle never imagined her second pregnancy would lead to a NICU stay, a rare diagnosis, and a complete redefinition of motherhood. In this powerful episode of B+, Ashley—who is also Krista’s cousin—opens up about the moment everything changed, from a routine ultrasound to delivering her son Connor 7 weeks early under life-threatening circumstances.

What followed was months of uncertainty, hospital equipment, and a diagnosis so rare it didn’t even have a clear roadmap. Ashley shares what it was like to grieve the life she imagined, to care for a baby she was afraid to bond with, and to become a full-time medical advocate while still trying to be present for her daughter, Kaylee.

This is a story of survival, fierce love, and unexpected joy. From tears in the NICU to baby giggles on a family walk, Ashley takes us through every raw, real, and redemptive step of her journey.

If you’ve ever faced a future you didn’t choose, this episode is for you.

Takeaways

  • Grief can come from losing the future you imagined.
  • NICU life is emotionally and physically overwhelming.
  • Parents often become full-time medical advocates overnight.
  • Bonding with a medically fragile baby can take time.
  • Support from nurses and community makes a difference.
  • You can still be the family you want to be—just differently.
  • Diagnoses can change, but your child’s spirit remains.
  • Resilience is found in the everyday moments.
  • Connor’s joy reminds us that hope lives alongside uncertainty.

About B+ with Krista Gregg

In B+, host Krista Gregg sits down with people who’ve faced life’s messiest, most meaningful moments—and kept going. From unexpected struggles to hard-won growth, each guest shares what they’ve learned about resilience, purpose, and the power of real connection.

This podcast doesn’t promise perfection. It celebrates the process.

Produced by Bright Sky House — bringing hidden stories to light.

Mental Health Resources

  • 988 Suicide & Crisis Lifeline: Call or text 988 for free, 24/7, confidential support for mental health crises, suicidal thoughts, or emotional distress.
  • Find a Therapist: Search for licensed therapists near you through directories like Psychology Today, TherapyDen, or Mental Health Match.
  • Join a Support Group: Connect with others through peer-led or professionally facilitated support groups via NAMI or GriefShare.

Stay Connected with B+

Instagram: @BrightSkyHouse
Facebook: Bright Sky House
YouTube: Bright Sky House Official
LinkedIn: Bright Sky House

If you have questions or would like to follow-up with any of our guests, reach out to Hello@BrightSkyHouse.com.

B+ is available wherever you listen to podcasts.

Hi everyone and welcome back to Be Positive. I'm Krista Gregg and today's episode is incredibly close to home because our guest is family. Ashley Lytle is married to my cousin Jeremy and together they've walked a road no parent ever expects to travel. Ashley is the mom of two amazing kids, Kaylee and Connor. And Connor's story? It's one in a million. Literally. From a complicated pregnancy and a very early delivery to a completely unexpected set of challenges that reshape their family's entire world, Ashley has lived through some of the hardest, most beautiful, and most transformative moments of motherhood. In today's conversation, Ashley opens up about the kind of grief no one prepares you for and what it means to love your child fiercely while living with uncertainty. She also shares how her family found connection, joy in a new rhythm, even when nothing looked like they thought it would. This is a story of strength, tenderness, and rewriting what normal looks like. And I am so honored to introduce Ashley Lytle and welcome her to the Be Positive podcast. Hi everyone, this is Krista Greig and welcome to another episode of Be Positive, where we are bringing some fantastic stories where we don't hide away from the darkness and we also just share some unique stories that have hope and transformation and hopefully inspiration for anyone who is listening. And today I am so excited to introduce Ashley Lytle and Ashley is family. This one hits close tone. close to home for me guys. Ashley's family, she was married to my cousin Jeremy and they have a really, really awesome kid on named Connor who has surpassed all expectations, has completely redefined their family and it's a one in a million kind of story where uh we are gonna be talking with Ashley about everything that her and the family have gone through. So I will leave you all wondering where are we going and first let Ashley introduce herself. Hello, yes, I am Ashley and, um, Chris is not joking when she says one in a million, quite literally, Connor is one in a million. And you know, we'll explain what that means. Obviously, I love you and Jeremy very much, but Connor is just so sweet. what exactly are we going to be talking about without too many spoilers, Ashley? uh Sure. Yeah, so Connor, our second born, is a very special and rare little man because he was diagnosed with a very rare form of dwarfism and it was an unexpected diagnosis. So yeah, just definitely changed our lives, changed our family dynamic, had us going through things we never expected to ever have to go through or deal with. Things that a lot of people don't ever think they'll deal with or want to, but... That's the hand that God dealt us. So here we are. So let's talk that you do have a firstborn, Kaylee, who's so sweet and our daughters get along so well. then you had the incredible news that you were pregnant again. So let's start there. That is where the story starts and finding out you're pregnant and imagining life with a second kid. Yes, absolutely. know, Kaylee even helped pick out his name. Oddly enough, she was really into PJ Masks at the time and she thought we should name the baby Catboy. But then we realized Catboy's alter ego is Connor and we all really liked that name. So yes, very exciting. Like she was excited to have a sibling. We're excited to have another kid. You know, I was an only child. So Jeremy had a brother very close in age and so he's excited that we're going to have a second. You know, so yeah, so we start, you know, going through the normal pregnancy routine and you know, we get to the point where, uh, I believe it was January. I was supposed to be doing May and in January we go to have the ultrasound where they're taking all the measurements and we're probably going to find out the gender. And like, it's taking them a long time. And I'm like, is this supposed to take this long? Like what's going on? usually of course the ultrasound techs like can't. necessarily tell you everything. And she was just like, well, I'm not going to tell you the gender today. She said, it just seems like maybe things are measuring a little smaller than normal. And so they referred us to specialists uh in Omaha and we had to go up there and they kind of check things out. We were able to find out the gender then that it was a boy. And so, of course, all the things of like, you know, maybe they'll play football or basketball. Like this is Jeremy's, know, because he's the athlete. So. You know, you just like all those things with a boy that you think, you know, like, so exciting. And then we'll have one of each. We'll have a girl, we'll have a boy. This is going be great. You know, and at that time they were like, hey, we don't necessarily see anything majorly wrong. Like your last child was small. This one will probably be small too, you know, so away from there. But they wanted to kind of closely monitor. So then it was about a month later in February, we were having another checkup and they were like, hey, There's an issue, I was diagnosed as being IUGR, uh intrauterine growth restriction is what that stands for. Yeah, no, I had no idea what it meant. And so essentially, yes, there was issues with the growth. It was very, very slow, measuring much smaller than normal at that stage of a normal pregnancy. And then also something having to do with like the blood flow, I think, back and forth between like the placenta and the baby. Don't ask me technical specifics on it, but anyway. something where they said they have to keep a super close eye on it and I had to go from having just normal pregnancy experience to two ultrasounds a week. um about this earlier I was so excited to when I was pregnant for my older sons and I barely I feel like I maybe had three but every time that's when he gives to your baby and you're like I had so many pictures, so many pictures. That's a lot. Yes. so one, like we were doctoring here in our just little local small town of like 7,000 people. So we don't have like all the, you know, a specialist here. You you just go to your regular family doctor. So we had one ultrasound here in town and then we had to travel anywhere from an hour and a half to two hours for the second one every week to see the specialist from Omaha. uh So yeah, so it was a lot. but the other thing they told us is like, Hey, every time you do come to us, we want you to have your bags packed and ready because if we see that there is an issue where the something about the blood flow, like back flowing or something like that, they said like, that's emergency, get the baby out right now, because it's a danger, I think a danger to me and the baby or something like that. So, yeah, which was kind of a scary thing for them to tell us. You're on edge, not only are you pregnant, but then you're on edge every two days a week wondering what if, and you're ready for that emergency situation. How did you manage that? For me, like, yes, like in the back of my mind, I was always like, my God, I'm freaking out. But it was kind of like, I went into like super mom mode. I don't know what you want to call it, but it was like, okay, like I got to have everything ready. Cause I have a kiddo back here at home and she's going to preschool and I've got to have things set up for her. So I'm immediately like laying out like the master plan of like, okay, here's our emergency contacts. The day that we have to, they say go. here's where Kaylee's going to go. Who's she staying with? What does she have going on? Like just having everything laid out and then like getting as much of the baby room stuff going because that room was kind of like a storage situation at the time and like furniture half put together and like just, you know, and so it was like go mode, just trying to prepare everything that I could. And so, and yes, I was a terrible pregnant person too, nauseous constantly. I always thought I was gonna throw up. so yeah, trying to not throw up, but also putting together this emergency plan and in the back of my mind being like, my God, what's gonna happen? Like I never thought I would be one of those people in that situation. You hear horror stories about pregnancies and now I'm in one. It is your body growing this extra human inside you and you are nowhere in control. the idea that you know what's going on is out the door. Yeah, yeah, it's, it is, it's scary. And I mean, you know, yeah, my first pregnancy was everything about it was totally normal other than she was a little smaller than normal. She wasn't even six pounds, like, was no concern, you know, so this was just completely new territory for us. And, and, know, the, they had told us too, that the baby's probably going to have to be born in Omaha. So that too was also like, that's five hours from home. So, you know, that also is just like, Oh man, like. our daughter probably won't be able to be there regardless of what the situation is when he's born either, you know? So there was just a lot of unknowns, but also trying to plan for the unknown and it's just, yeah, it was a crazy time. so that the two ultrasounds a week went on for a month um before we kind of got different news. um Yeah, so every other week they'd really take a closer measurement. closer look at the measurement of his growth at every other specialist visit. And so it was the beginning of March and they said, Hey, your baby really hasn't grown in the last two weeks. So it wasn't like a backflow emergency situation, but they said at this stage of your pregnancy, babies can do okay. You know, obviously they're going to be in the NICU for a while, but like babies can do okay at this point. And they said, we think it's safest if the baby comes out now. And so they said, you can go home, get your affairs in order. You're headed to Omaha tomorrow. And that was, I know it's say 33 weeks. Was that about right? Yes, yes, I think that's when he was born at 33 weeks. Yeah. So, cause he was due, I want to say like Mother's Day weekend. Yeah. But he was born March 6th. Wow, and so what was that next 24 hours? yeah, go home. And that's when I put my emergency plan into place. I'm so glad that we lived in McCook when this happened and that we have family here. And so it was like, okay, grandma and grandpa, you got to take Kaylee. Here's preschool. Here's when she's got to be there. Here's what she's got going on for the next two weeks. Cause I didn't know how long, whatever, you know? And so they had her plan goes into place. Like we kind of repack our bags for a longer. We didn't really know how long, but. potentially longer duration and take everything we need. And then yeah, the next day we leave early and head up to Omaha and get checked in. I actually was in the hospital for a couple of, I think two nights before he was actually born. Maybe one night, I can't remember, but yeah, it was there for a little, it wasn't like emergent immediately put me into C-section, but yeah. Because you had a lot of time and also not a lot of time to kind of absorb this new news of getting, you're gonna have a baby, you're gonna have Connor. uh it's circumstances which originally you weren't imagining when you knew you were pregnant. What was the conversations happening between you and Jeremy as you were preparing to have the C-section? You know, I think there was kind of like this unspoken thing in both of our brains where we were just like, we just kind of kept out loud where we're like, it's going to be fine. It's going to be, it's just going to be a smaller baby. Like Kaylee was a smaller, he's going to be smaller. Yes, you know, we're going to be dealing with some NICU time, but that's okay. You know, but I think in the back of our minds, we were both thinking like, okay, surely this can't be worst possible scenario. Not why would that happen to us? What are the odds it's going to happen to us? Like everyone thinks that right? What are the odds it's going to happen? Like we're kind of planning out like after he's born, obviously I'm we're like, okay, Ashley's going to stay in Omaha with Connor because we know he's going to be in the NICU. Jeremy's going to go back home, take care of Kaylee, try to give her a sense of normalcy. Like we don't know how long this is going to be, but we've been told that typically they go home roughly around their due date. So we already knew roughly how long this. Nick you duration was going to be. So I mean, we're just kind of talking logistics. mean, it again, I think we both had kind of that like, what is in the back of our brain, but we just like didn't want to say it out loud. Or at least that was going in my brain. just don't know what you don't know. But you ended up going into the hospital, having your C-section, Connors-born. So yeah, C-section was, I mean, I've never had major surgery. So first of all, like that was just like not enjoy that experience whatsoever. Yeah. So Jeremy's there with me. He's all, you know, in the garb that they, put, you know, dads in. And this is, keep in mind, this is 2022. So they're still sort of under like COVID a little bit. So there's still a lot of masking going on. You have to like. They check your temperature and masks everywhere. So there's that. but anyway, so yeah, so surgery is happening. They take Connor out and like, there's like a clear screen. So they hold them up and I could see him and I'm like, Oh dear gosh, that's a really tiny baby, which I knew, like never seen a baby that small in real life before. And he had like this bright bleach blonde hair, like so much hair. And it was bleach blonde. I'm like, wow, where did that bleach blonde hair come from? That's crazy. You know, and so like, kind of got to like put my finger up against the plastic and like his little tiny finger was kind of trying to like wrap around my finger. And I was like, well, again, just like the teeniest, tiniest hand wrapping around your finger that you can imagine. So we kind of had that like brief moment and then he is whisked away into one of those little boxes incubate whatever they call it that takes them away and Jeremy follows and like a team of people with Jeremy just go baby's gone. I mean, even through my birth, Matt was like, wait, who do I go to? Do I go to mom? Do I go to baby? Like, rough wuh. Okay, just I'll go where you tell me. Yeah, so so then they do whatever they have to do with me and then I get whisked away to some recovery room and then Jeremy comes back in and they strap a breast pump on me immediately and I'm like, whoa, what's like this is not happening with my first pregnancy, but I didn't think about it. But because he was born early, things were not ready yet with the body. Right. And so they're trying to like get it going. It's like, okay, your baby needs milk. Like, let's go. And my body knew what to do. And it wasn't a lot at first, but it started producing. They, they kickstarted it. So, so there was that. So then once that was done, they wheeled me into his room in the NICU. And that was one of the hardest moments of my life because when you have a newborn baby, you expect it to be this beautiful, cute little bundle of joy. And I hate to say this, but like, he just looked like this little like alien. Like, I didn't... It wasn't like this cute cuddly little baby. Like, he's... All these tubes and he's intubated and he's in this box. Like, it's one of those things you have to stick your hands through the holes and like, obviously, like, all the sanitizer, clean your hands, whatever. And like, I almost didn't even want to put my hand in there and touch him. I was like, I'm going to break him. Like, I don't... I'm going to bust a wire. don't... You know? So that was not... This is not easy because that was not like, you know, so opposite of the first pregnancy. had this beautiful, cute little girl in my arms and now I have this thing in a box and I don't, it's my baby, but I'm like, that's not my baby. You know, it's, it was so hard. panel is roughly 2 pounds, 12 inches long. He was under two pounds. was one pound, 14 ounces. Little baby boy. Yes. So tiny, so tiny. And again, like I didn't even know that, like, can you imagine like the teeny tiny little diapers? They have teeny tiny little diapers for that. I mean, that's like doll diapers, you know? And then again, like you could barely see him, it seems like, because he's got all the tubes and wires and all the things. So that was really hard and like reality all of sudden set in. Um, you know, I heard later from like his primary nurse that she basically did not leave his room all day because it was very touch and go because he's born very early and very tiny and needed a lot of help breathing and all the things, right? mean, so yeah, to find that out later was like, Oh my gosh. He was delivered at 33 weeks. He was still very underdeveloped for 33 weeks. Correct. Yes. Right. Right. So then to kind of fast forward progression, like, you know, so now I have a doctor and the baby has a doctor, right? So the doctor that sees the baby comes and gives us an update. I was probably in the hospital for two or three nights after that. And so I think, I don't know if it was the next day after he was born or two days later, don't remember why, but he had to have a blood transfusion. I think he was getting anemic or something like that because lots of, and they have to take blood. And so. The doctor said, well, we should probably try to find out why you had this IUGR, why he was born. like, let's see if we can find a reason because that may help us with, you know, if you were to have a future pregnancy or if there's anything else going on with Connor, that can help give us some answers. So they took blood from him and then they took swabs from Jeremy and I and sent it off to a lab. And then, you know, it took like, I think like two weeks or something. for us to get results back. You guys get swabbed. You're now recovering in a hotel. Jeremy eventually has to get back home to Kaylee. Jeremy had gone home maybe three or four days after Connor had been born. Because again, we got Kaylee back at home. He had to kind of come back here and put his plan into place of kind of being single dad a little bit for a while. Yeah. How much have you really talked to family about what you guys are experiencing yet and the unknowns? Right. So, I mean, very few people even knew that he'd been born. ah Like we weren't about to announce this to the world because I mean, let's be honest, we didn't even know if he'd make it home. Yeah. I mean, when he's that little, born that early, we don't, we don't know. So obviously our parents and close family know, and then all of our kind of close friends, emergency contacts that are back home helping with Kaylee or whoever, those are the only people that know. You know, and so it was. Again, it's like, we don't get to make this awesome grand gesture announcement to the world that we have a new baby. So, okay, we've kept everybody waiting long enough. What was the result after the two weeks of the genetic testing? Right. They come in one day, well, and they kind of give me a heads up. So I had to make sure. So Jeremy's not there with me, right? Again, he's back home, working his job, taking Kayleigh to preschool, all of things. So we find out that they have a diagnosis. And so they take me, the doctor on duty that day, the nurse on duty that day. And there's a couple of like genetic counselors, specialist people. And then, so we all go into our room and I'm like, this doesn't seem comfortable. This feels like it's going to be bad. And then. I just have to call Jeremy on speakerphone. So I don't even know how much I think he was able to hear most of it or the gist of it, but honestly, I don't even know how much of it he heard. But anyway, so we go into this room and to be honest with you, most of it's a blur and I really don't remember that many specifics of it because they basically tell us like your child's been diagnosed with uh MOPD1. Well, what the heck does that mean? And they go into It's a very rare form of dwarfism. And I'm like, okay, how dwarfism are we talking? And they're like, well, it varies a lot, but no more than four feet tall. They didn't tell us a certain part. I'll get to this part in a minute, because this is something that was Googled and found out later. But anyway, it was kind of some doom and gloom, but also like a lot of unknown because they said it's very, very rare and there's not a lot known about it. like. There were certain questions that we had that they just couldn't answer. Yeah. They were like, well, that's something we're going to have to kind of wait and see. And so I'm just bawling, crying. Towards the end of the call, Jeremy said, okay, like I want to go read up because they were like, we'll send you some information. Like they gave me some packet. They told Jeremy some website he could go look at because he was like, I need to go get some more information on this. And then I would like to call you back. Um, and so. After that meeting, I went straight back to my hotel room and stayed the rest of day. And I'm pretty sure that meeting happened in the morning. I was distraught. I was like, this is a dream. This is it real? This is it happening? I don't know how to deal with this. Like I just wanted to go to sleep and wake up and it, like, it was all just a bad nightmare. Honestly, like I didn't think, and I didn't even want to go back the next day. And so then I, of course, Jeremy and I talked on the phone later. He told me after he got that he was at work, right? And he had his door closed and he said he cried. had his office door and just sat there and cried for a little bit. like life altering news. Again, we thought it's not going to happen to us that we get some rare, extremely rare genetic thing, which going back to the one in a million. This is like how rare it is is one in a million or less than one in a million chance of getting this rare form of dwarfism the MOPD one stands for not that anyone is gonna know what this means, but it's microcephalic osteodiplastic primordial dwarfism type one and so this primordial there's lots of different types of primordial dwarfism. He's just like proportionally small everywhere Yeah um There's something that you mentioned to me. um At one point, this was a type of grief where we were grieving the lives that we imagined. Yeah. Um, yeah, I had never, never thought that I'd be grieving, like you said, grieving someone that's alive. We're not going to have the normal family experience that we expected. And at that time we didn't even know. And I guess to this point, Jeremy had gone back and done some research. The research said that the life expectancy was like two years. Um, and so. You know, it's like, well, I mean, gosh, we're going to be dealing with whatever we're dealing with now for two years. And then I guess we're going back to a family of three. Like, I don't know. Like it was, yes, very much grief. Um, just in a different form that I've never experienced, never expected to experience because yeah, again, I don't know what this means. Like, are we going to be able to do all the things? Like we love to go outside. Can we still go outside and go hunting and fishing? Can we still. go hiking, can we go on vacations? And then what is this going to mean for Kaylee? And she was looking forward to having a sibling and now is she going to lose a sibling at such a young age? And that's going to be traumatic. All the worst case scenarios things are just going through your head. so, grieving that normal life that we thought we were going to have with a boy and a family of four is just, yeah. That was just gut wrenching. And at this point, you haven't really been able to bond with Connor in a way physically like you have when you have a healthy baby born where you can cuddle them and you have, know, body to body contact and you're able to breastfeed and some of those things. So you're already having a hard time bonding and then you get this news. What was that like from a really closing yourself off and protecting yourself? Well, right. So yeah, like I didn't even get to hold Connor until I think it was around, he was two weeks old or so. Um, yeah, because they have to wait until he's a point to a point where he's stable enough. Um, and so then once, then one day they were like, Oh, would you like to hold him? And I was like, I can do that, but he's covered in all these, these things, you know, and he was still intubated, still intubated. And they said, well, yes, like it takes. about three of us, but you can hold your baby. they actually skin to skin contact is huge in the NICU. they are like, you hold your baby as much as you want to, as long as you want to, like they will make it happen because that is very important in a baby's developmental whatever in the very early stages. And especially one that's already starting out behind, that's huge, but also, you know, bonding, whatever. So I was definitely hesitant, but I was like, mean, yeah, like skin to skin to not yet. Okay. Yeah. Bring it on. And so I sitting in this chair and they bring him over wires and tubes and all, and they kind of just set him on you. And I get like, I'm basically just wearing a shirt with a bra because again, skin to skin. And, and so then like, they kind of get in place and then I can just kind of put my hands on him and then you just like, don't move. You feel like you can't move like even an inch because you're afraid like a wire is going to come off or he's going to become like an intubate himself or like something bad is going to happen, you know, and there's like monitors that you're always watching. Like that's another thing I don't think we talked about before is like there's monitors that you can always watch their heart rates and their oxygen levels. And there's always beeping going on. Like it's just, you can get fixated on it. Yeah. And so like, yeah, I'm just sitting there and I'm like, I can't move. like, again, it's weird because like, this should be bonding time, right? And in a way, yes, but also mentally I was again, based on the information I've been given, I was like, okay, I'm just doing this to give him the best life possible while he has it. I, okay. I'm doing this because this is what I should do. Right? Like. I don't want to say I didn't love my baby, but it was just this very weird, surreal emotion. I just didn't... I don't even know how to describe it. There's no right or wrong here. You are in an emergency mode where you're trying to figure this out and nothing about this is normal. No, no, absolutely not. mean, and I'm sure other NICU moms can relate. So like there's a certain beep that like if their oxygen or heart rate drops below certain rates, there's different beeps for different things. And so every time like that, bad beeps start, you're immediately like, my God, what's happening? And then you're waiting for like a nurse to come in like, hello, get in here. It is scary. There was actually one time there was a nurse in there doing something with him and he somehow took the tube out like he had been intubated and somehow it came out and a whole swarm of nurses came in and they're all like doing things. No one told me what was happening, which is fine, like deal with him. But I was like, I feel like maybe I shouldn't be here. Like even though I'm just in the corner and I'm probably not in the way, I feel like I shouldn't be here. So I like sneak out. And I go off to like this little family break room and I'm like crying because I'm like, is he dying? Like what is happening? I don't know. I'm freaking out. And so like some other nurse comes in, I think they knew I left and checks on me and she's like, hey, everything's okay. He just, the tube came out. They've got him re-intubating. They're getting him reset, calm back down. You're fine to go back in whenever you're ready. You know, just like things like that, like, on a moment's notice. a lot of advocacy for Connor, right? He's in the NICU. There's a lot of people looking out for him. Was there anybody in the hospital, healthcare system, anybody there that was also advocating and looking out for you? The nurses were amazing. Like when he went through that whole thing, and this there was more than once where something happened or he had to go have like a MRI or something that was going to be scary and uncomfortable for him or me or both. Like they would give you like a $10 Starbucks gift card and be like Hey, go down to Starbucks, go get a drink, just go like take a break at the NICU for a while, go relax. They also always had people like once a week that would come and talk with me, just to be like, are you feeling? Just checking in, how was family at home? And so there was one night where I was trying to leave, but then like he started crying and I'm like, I don't feel like I can just walk away. And so like I pick them up and of course, like you can't like walk anywhere really. Cause again, tubes, wires, whatever. So I'm holding him and I'm trying to calm him down and calm him down and it's just not working. And just, just all of sudden just I'm waterworks tears and I'm, I'm stressed. I'm overwhelmed. I'm tired. I, you know, I'm like, I don't know what to do. And like one of the nurses came in and she just had to talk with me and she was like, this is normal mom. Like. You know, you're doing amazing. And she's like, you're here. That's enough. She gave me this whole, I can't even remember her speech, but she was like, go home, go take a bath, go take care of yourself. And she said, even if you're not here every day, that's okay too, because some moms can't be, you know? And she said, you're already doing above and beyond what most can. And so yeah, like the nurses in there. My gosh, like I, his two primary nurses, I still am in touch with and I still send them like updates on Connor because that whole team there was amazing for not just Connor, but for me too. So at what point was it okay for Connor to come home and what was that transition like? Yes. So for normal NICU babies, there is like a weight um of four or five pounds somewhere in there. But of course, given Connor's unique situation, know like his growth was like grams a day based on his diagnosis. He would sometimes gain too much weight in a day. Didn't even know that was possible for a baby to do. That blew my mind. um So his weight was definitely kind of like up and down a little bit. There was just random issues that would come up all the time. And so it was like, well, he's got to be stable enough to go home, which I mean, at the time I didn't really know what that meant. I was hoping, I was like, okay, we're going to get him off oxygen. That's my goal, right? And so like, he actually probably stayed a week or two longer because I was like pushing, because they had started kind of experimenting with taking him off for short periods of time. um And there was one point he was off for, was it like a day and a half, two days? I don't know. But yeah. So I thought, okay, great. Yeah. Like he's going to be able to come home. No, that wasn't the case. Doctors made the determination. He's going to come home on oxygen. Um, but he was, he was at a point where he was stable enough. He was four, I think he was four pounds something. And basically he got to a point where he was, you know, not intubated. He was able to drink from a bottle. Um, or breast, he was kind of doing both at the time, you know, and yes, he was going to be going home on oxygen, but some kids go home on a lot more than that. that you guys are now his at home medical team. We're going to be reintroducing him to family, to Kaylee, um teaching Jeremy everything as well that you've been learning in like a 30 minute here's a quick DIY of how to take care of your kid's session. like a lot. Yeah, yeah, they taught us apparently everything we need to know about oxygen in about 30 minutes. I was like, I don't feel comfortable. That was very intimidating. And like, they're like, okay, we're gonna send you home with all these big heavy tanks of oxygen. And here's how you connect this and do this. And they're like, it's easy peasy, no big deal. And I'm like, No, it's a very big deal. This is how I keep my child alive. There wasn't much for an instruction manual, you know? And it was like, so like this monitor that I talk about at the hospital, like basically one came home with us, right? So he was always on a monitor at home that told us his oxygen and his heart rate. it's like, yeah, so like all of a sudden, like we have to learn how to use this. What I thought was complex medical equipment. Probably wasn't that really that complex once you figured it out was pretty easy, but. Very intimidating, very intimidating. Something that kind of happens around the same time getting ready to go home again, going back to not everyone knew Connor was born, right? So, but now we know he's going to get to go home at least. And so we're like, I guess we tell the world, you know, typical Facebook announcement. It took me a long time to craft that post because we were like, we feel like we have to say something. So it was kind of like, hey, surprise, Connor's here, but guess what? He's actually been here for three months. And then, you know, kind of going into a little bit of like, Connor was born early because of this, he was diagnosed with this. We don't have a lot of answers, but it is what it is. He's healthy enough to come home. We're all excited to be home. But along with that is before we posted it, we hadn't told our parents. about the diagnosis. We'd known about the diagnosis for the majority of the time he was there. We did not tell them because we didn't, we knew there'd be lots of questions and we didn't have the answers. My parents had came to Omaha to visit one day and I sat them down and told them he's going home but here's the deal, you know. And then I think, you know, back here Jeremy went and met with his parents and kind of had the same conversation with them. Of course we told them don't Google it. But you know they all did. Right? We're like, don't Google it. It's bad. Don't Google it. um But you know, I'm sure everyone on Facebook did too. there's not a lot of study, a lot of my agnostic test so really I'm it's so rare, you're not gonna find much anyway, but yeah, it's out there. So how was Kaylee's reaction to meeting her Vader brother? Yes, so she did get to meet him. It was Easter weekend when she got to meet him. So kind of roughly halfway through and she was well, first of all, we prepared her. Granted, this she didn't know any different. So for all she knows, this is how every baby is born and has to do it. But like we were kind of preparing her for like, OK, like and they even had like a counselor who works with kids like especially come talk with her with us. Like you're going to see the baby. He's going to be he was in a crib by this point, thankfully. But like. He's going to have certain wires on him and here's the safe places to touch him and here's the not safe places. And we always have to make sure our hands are clean and that just like kind of going through basics of talking through. was five, I think at the time. So, but we got in there and she just like, at this point he looks a little, you know, more like a normal baby, just very small, right? So he does look like this cute little bundle of joy. Um, and so she was just like, beaming. Like I have a picture of her sitting in my lap and then she's holding him and she just has the sweetest little smile on her face. Like she was just so proud of her holding her little baby brother. You know, again, despite all the tubes and wires on him, like again, she probably didn't know any different. And so like she was just so happy to get to meet him. There was even one sweet moment where they give the babies baths and then the cue every few days. And so parents can stay and help with those kinds of things if you want. um And Jeremy happened to FaceTime you while we were giving Connor a bath. And oddly enough, Kaylee was also taking a bath. And so like, was like, Oh, look, your baby brother's taking a bath too. And so like, she could see him and she was just like, Oh, hi baby brother, like yeah, in the bath too. You know, and it was like the sweetest moment. It was so cute. And just like things like that, like kind of made the situation a little more bearable, you know, and she was so strong through the whole. journey because she didn't have mom hardly for three months, but she, was so proud of how she handled things. Amazing. She is. So you guys have Connor home. You guys are acclimating as a family. Your extended family is starting to have a lot of questions and you're finally telling them what's going on to the extent that you can. And then at some point it has been determined that, I'm going to say this all wrong, that Connor's immune system is not able to fight off bacterial infection. Yeah, so that was super scary to find out like he's immune compa- and like I didn't know at first that it was just for bacterial stuff like because we were- this was all very new and confusing for us so like I thought it was like anything, you know? And the doctor had even told us, hey if he gets a fever he might need to go be in the hospital immediately. Even a simple cold could land him in the hospital is what we were told, you know? but they can't start them on this immunotherapy until they're at a certain age or weight or something. And so he kind of had to have blood tests. It was maybe every three months or six months, probably every three actually, I guess, because it was within his first year. But yeah, so they were like, okay, you know, these certain, there's B cells, there's T cells, there's immunoglobulin, I don't know, all the things that are still very confusing to me. But just basically certain numbers are not where they should be. for a baby at the age he was at. And I believe he was, I think, like nine months old, I think, somewhere around there. And they said, hey, we're gonna need to start him on IgG or immunoglobulin infusions. And I was like, are we gonna have to take him to like, doctor or the clinic? And they're like, no, like we can teach you how to do that at home. And so now it's like the oxygen thing all over again, right? Like, I am not a medical professional and you're expecting me to do this. This is crazy. And so... Yeah, they had someone come in and train us at home and showed us how to do this. it's like, you stick a needle into a fat layer, which by the way, he has almost no fat. Like at that time it was really minimal. He's got a little bit now, but like, he's a really tiny little dude. And so you stick a needle into the fat layer and then, um, it's only five MLs. And so you just kind of slowly with a syringe like. 5 mls just kind of slowly gets goes into the fatty layer fatty tissue and then it just kind of slowly absorbs into the skin and then that is supposed to keep his immune system at the levels it needs to be at for the proper protection that he needs but yeah so then yeah it's like this is really scary then because then I felt like I need to keep them in a bubble I have a kid that's gonna be going into kindergarten soon and bringing home all of the things and I was just so scared I had hand sanitizer in every room of the house. It was so scary because I was just so afraid that any little thing was going to land him in the hospital. Seeking care outside of yourself and Jeremy probably was a little bit intimidating because while everybody is very much well intended from grandparents and beyond, not only do you have to teach someone how to help his oxygen, now all of a sudden you got to be really sterile coming into this. So was that pretty isolating between the two of you, just all of this on your shoulders, especially in that first year? Yeah, because honestly, I didn't trust anybody else to do it with a lot of stuff. Like we did find, let's see, he came home in May and by December, I had finally found like an in-home person to come help watch him because I wanted to go back to work. I had been on my maternity leave since May and I was like, I gotta, I gotta get back to work. I need another purpose. Like this is driving me crazy. And so like, She had some medical background, she was okay with managing the oxygen because I couldn't just pick him up and take him anywhere in the house. He's attached to tubes. If you want to take him to another room, you got to take the big concentrator with you or hook him up to a tank. He could be off for short periods of time early on. Very intimidating, very isolating because it felt like we couldn't leave, couldn't go anywhere, couldn't do anything because One, he's on oxygen and two, like, can't let him get sick, can't do anything. And if we do, like, the moment you walk into the house, like, just like, to completely change your clothes, take a shower, like, I don't know, just sanitize all the things. I probably overdid it, but at the time I didn't. I don't know. I mean, your sole purpose at this point, you know, I'm him alive. That one year part you mentioned at one point to me that that's when you really started opening yourself up to bonding with him. Was there a moment that really struck for you or were you finally starting to be on edge as much anymore? you know, as time went on and he kind of slowly started to get to be like his oxygen levels were really like being really steady. He was able to be off of oxygen for longer periods of time. That was helpful just because that granted us more freedom. One thing there was one day we were out on a walk as a family and, Jeremy is like, Mr. Goofy, anyone that knows Jeremy knows this. uh Jeremy was kind of like making faces at him or whatever and he just started laughing and like I had never heard him laugh like he'd like laughed and smiled a little bit before but this was like huge like belly uncontrollable laughter and like it was just to see him light up like that I was like this is what this is what you want, right? Like this is what I want to see out of my baby is like happy, like the baby giggles, like everyone loves the baby giggles, right? And so like that was one thing that I think really helps me like, my gosh, like this is sort of normal, you know? Then we started doing a lot of therapies when he came home, right? Like we started doing occupational therapy and physical therapy and um I started to finally see a little bit of progress. It was really slow going for a while, but like Once he was able to kind of start like sitting up a little bit on his own and rolling over a little bit and just starting to kind of like progress. was like, okay, he's starting to get some personality. Like there's some smiling going on. He started to like interact with us a little bit more. think that was when I started to be like, maybe I can open up and start bonding with this, you know? And then, you know, like I said, like I told you like two years, right? And so like. In a way, I felt like I was holding my breath for the first two years of his life, right? Because you're like, I don't know, right? At any moment, again, a simple cold could land him in the hospital and that could be it. I don't know. And so when we got to his second birthday, look at this kid, he's doing great. You know, so that was, again, it was kind of a slow progression, just little things here and there, but getting past that two year doom and gloom, two year mark really, really, really was huge for us. And now he's three, over three, walking, he's running, he's... I mean everything you guys is like just rambunctious crazy little boy. One of the things that I wrote this down as a quote was something that you said in our pre-meeting, which was, know he's going to be behind, but I want to give him the best chance he can to catch up. And with all of the different ways that you are supporting him physically, mentally, emotionally, all of the love and support that you guys have rallied around for Connor. I mean, I just, think it's so incredible. You're at the three year mark and you're looking forward even further into the future of what life could look like for Connor. What do you hope for him? What do see for him? I mean, that's really hard to answer. You know, like, can I say like, he may get married someday, that he may have a job someday? I don't know. I don't want to say no, but like, I know that he's going to be Mr. Social. I can tell you that because he already is. So while he's going to be, I know he'll be behind in school, at least for the early years of school, he's going to do great because he's already very popular. at daycare. So, you know, I guess I don't know. I have a hard time answering that. You do have a really good support group though on Facebook with a lot of different moms who have different varieties of MLPD-1. But what we haven't covered yet is you guys have also recently found out, and I don't know how recent it is, but that MLPD-1 is the more severe side of this genetic dwarfism and Connor is now being diagnosed as a less severe. Yes. Yes. Yes. So, um, a couple of years ago, and by the way, we've been blessed that our genetics doctor in Omaha is actually one of the experts on this crazy rare thing. Like her name is on research papers. That's how we, so we're lucky to have someone who knows about this, knows how to treat it, everything. So they came out with a research paper that she was a part of a few years ago. and it's a little bit of like, it just kind of talks about. all the different typical things that they look for when diagnosing it. And then there was like, what really spoke to me was there was this chart and there's, so the gene that's affected is called RNU4-INGTAC. And so it's a wide spectrum. There's a few different names of diagnosis. So there's MOPD1, there's Royfoon syndrome, Taby Linder syndrome. There's all these different things at different points in the spectrum. And so yes, MOPD1 is what he was officially diagnosed with on paper. Because at that time they didn't have a ton to go off of and they were still learning about it. And so they had the genetic code genes, whatever to look at. And then they had, you know, his, how the pregnancy went with the IUGR and the, small grows and just certain physical characteristics about him. That's all they had to go off of. But then, but when you looked at that chart and where he was at, and I think he was probably around two years old at the time. Yeah, somewhere in there, two and a half. He did not meet all these crazy severe criteria that was under the MOPD-1 category. And there was like this other column. It was literally called other. And I was like, I feel like it kind of fits into this. And when I talked to his genetic counselor, she's like, yeah, I do too. And so now when they read that, when they diagnose these kids now, they are not very quick to throw out that MOPD-1 unless they have very specific. gene numbers or something like that. I'm not going to say it right. And so they just call them having RNU4A tachopathy, is a really weird thing to be diagnosed with. so yeah, so Connor is very much on the more like mild to moderate part of the spectrum, which we are very, very thankful for because again, not the doom and gloom that we were originally told. Like he's walking, he's not talking, but he's making sounds like, so I'm confident he will talk someday, you know, and he's Like I said, very much a typical little boy that's like getting into all the cabinets and throwing things everywhere and climbing on anything he can. And he's very onry. Like you tell him like, don't do that. And like he turns and gives you this little smile and then just like, he's going. Yeah. Like he's so yes, to, to, to just like learn that like what I was reading on this paper and what I was feeling in my mind, how I'm like, I don't feel like he's as severe as what he was made out to be. And then have the doctor to confirm that is like, okay, like this is amazing. Like, thank you. And I'm, I feel very blessed because I know very many other families, like you said, in this support group, have a small Facebook group of other families who have kiddos affected by the same gene. And I know there are many of them dealing with different complexities that Connor does not have. And so props to them because they're amazing for dealing with all the things that they deal with. But that support group is great because we can all, know, someone will be like, Hey, like we're dealing with this. How did you guys handle it? I just saw someone post recently that they're just about to start the whole immunoglobulin and infusion adventure. And so they were asking for feedback and like, what's the process for everyone. And so we're all kind of trying to help each other out. And so it's really great because there's a very small pool of us all going through the same thing. And so we can all kind of help each other out and be like, well, we tried this and this worked for us, but. you know, maybe this will work for you or whatever. So yeah, it's been a, it's been a nice little support system, but he's got amazing therapists in town here too. Like we live in a small little rural place, but like his therapists are great. have a great OT that comes into our home. We have speech therapy we go to. have great physical therapists that we go to. There's an early development network in Nebraska and they have an OT that comes from the school to meet with us every other week. And she's going to be the one that works with him all the way up until he's a senior in high school. Most of his doctors and therapists and everyone are women. So he's got like all these ladies that he flirts with and he's just like, they do amazing with him. Like they're coming up with creative ways to help him do things. I mean, something as simple as like. He's got to learn to go up and down stairs. That's challenging for someone as small as he is right now. He's around 30 to 31 inches tall and he's three years old and he's almost 17 pounds. He's wearing like 12 month clothes. So, you know, like we have a lot of unique challenges. For example, we're going to start trying to potty train soon. Oddly enough, I found underwear that fits someone as small as six months old. And that's apparently the size that fits him is the six month. undies. Like these these teeny tiny little undies. They're so cute. But like that's just one example of like a unique challenge. I can't just go to the store and buy him underwear. Yeah. You know, so just different things like that are going to be lifelong challenges. But yeah, it's But you guys are getting together through it together as a family and how is your relationship with Jeremy evolved through the last three years of all of these new dynamics of a lot of different pressures and hopefully together through all of this as a team? Right. Man, I tell you what, Jeremy was a rock. Even if there's probably times where internally he was struggling, but he was definitely a rock. But in a way I too, like, you know, before he was born, I went into like emergency mom mode, whatever. I think I kind of went into some of that too, like coming home and dealing with everything. You're in survival mode. Put my emotions aside. But yeah, Jeremy and I together, honestly, we've been on the same page with. pretty much everything and honestly we've been that way through most of our marriage thankfully. We just work really well together but I mean it was definitely hard you know and I mean we're usually on the same page and we're just doing what's best for him but what's also best for our family and luckily like I said he hasn't been the doom and gloom that we were told. Absolutely. Well, and one of the things that you wanted to give advice to anybody who's listening, who may go through, whether it's the smallest of struggles as being parents or the hardest of struggles of what you guys have experienced is, um you still find a way to be the family that you want to be. And you have some creative ways to make that still happen. Yeah, yeah, I would say absolutely. Like to anyone who gets some crazy diagnosis, life altering, family altering stuff, like find a way to keep your normalcy. Like find ways to, you know, like we like to go outside and to do things. And I went and bought like a portable oxygen tank backpack, right? So like, okay, I'm going to strap this heavy thing on my back and I'm going to put Connor in a little carrier on my front and dang it, we're going to go outside and go on a walk. because there were trails we wanted to walk on that are not really stroller friendly, but dang it, we did it. know? So like, that's like, heck, we were with you. We went up to a top of a mountain and brought oxygen with us just in case. At that point and doing really well, but we still had it as a backup. But you guys were so great because you knew, look, if we don't stretch the limits, we're never going to know what the limit is. But at the same time, we paired in case of, and I was even getting altitude sickness and I'm from Colorado. Like when you go up to extreme elevation, you just never know. And you and Jeremy were doing so good. Like, okay, how's he doing? Do you think he's breathing? Okay. How are we doing? And we went up, we saw, then we left and. Yep. ah Don't think our daughters complained about headaches more than Connor. Like he was fine the whole time. The girls were like, I have a headache. Yes, he's such a trooper. He's just like, he is seriously, I mean, you know this and you're going to see it again in a month, but he is like to see what he's diagnosed with on paper. It sounds very medically complex. I don't even know all the things, what they mean when I look at his diagnoses on paper, but then to see him in person. He is just the happiest, sweetest kid. Like every time a therapist comes to our house and they leave, he holds their hand and walks them to the door. He is, yes. And like every time we go to the therapy clinic, he's like, he kind of like runs around like he runs the place. Like he just like runs around. He walks up to any stranger and is like, pick me up. And like just blows kisses. Like he is the sweetest, happiest, doesn't know there's anything wrong with him. Like he's just so happy to be Connor. Yeah. He just lightens up a room. it just warms my heart that he has that effect on people. Well, I think you so much for sharing your story. Absolutely. I'm, I'm happy to share it. I'm honestly an open book these days. Like took a while for me to like know how to talk about it or talk about it without crying. But if it can help someone else that gets some kind of crazy rare diagnosis, even not rare diagnosis, honestly, if I can help someone else figure out how to get through it and how to manage your family, then you know, I hope it helps somebody. I know it well. Well, thank you so much for joining, Ashley. And yeah, I'll see you soon. Alright, sounds great!