#335 - 👶 Siblings Are Also In the NICU

Hello friends 👋

In this episode of Beyond the Beeps, siblings of NICU babies share their personal experiences and insights on navigating life with a sibling in the NICU. They discuss the challenges, emotions, and responsibilities they faced, as well as the lessons learned about patience, awareness, and resilience. The conversation emphasizes the importance of support from parents and healthcare providers, and the need for open communication about the realities of having a sibling in the NICU. The siblings also reflect on their hopes for the future and the unique skills they have developed through their experiences.

Link to episode on youtube: https://youtu.be/IBGeD-Q3PBs

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The transcript of today's episode can be found below 👇

Leah (00:05.369)

Hey everyone, this may be the best day in Beyond the Beeps yet. We are here with two NICU siblings to share their stories in immense wisdom with us. We have Raygan here, who's little sister Lori, you've heard a little bit about in a previous episode from her mother, Shakeema and Braelyn who's little sister, Heiris They were both in the NICU for a while.And they're here to share their stories, their feedback, give us some guidance as adults and as medical providers and how we can support NICU siblings better. And also to let the current NICU siblings out there know that they're not alone. They're not the first ones, they won't be the last, and that there's other big brothers and sisters who care about them. So welcome, Raygan, and welcome, Braelyn, to Beyond the Beeps.

Leah (01:05.226)Yeah, awesome. So this is a super, super great day. We're also going to have at the end of this show, we're going to bring in a developmental professional to her name is Lina Acosta Sandaal. And she is a developmental psychologist to give some feedback for our parents out there on what to do. But first, I want to chat with these two wise folks about their experience. Let's start with you, Raygan.Tell me a little bit about yourself. How old you are now, how old you were when your sister was in the NICU, and what things you like to do now.

Shakeema Smiley (01:45.898)Okay, so of course my name is Raygan. I'm 15 years old. I just turned 15 and I think I was probably like nine or ten when my sister was in the NICU. But now I like to dance a lot. I just like to be very social with my friends and stuff. So yeah.

Leah (02:05.422)Awesome, thanks Raygan. And Braelyn, how about you? How old are you? How old were you when your sister was in the NICU and what kind of things do you like to do?

Shakeema Smiley (02:16.718)Uh, well my season with y'all is like seven. I'm 14 right now. I'm gonna turn 15 next month and then I play high school football. So that takes a little bit of my time. Play at Garner. So, you know, we miss. Nah, I play at Garner in high school. I play receiver in corner though.

Leah (02:27.574)Yeah. You play corner.

Leah (02:34.498)Garner, you play receiver. Okay, that's amazing. As a freshman.

Shakeema Smiley (02:37.315)Yeah.Yeah, I'll ride this off of him.

Leah (02:42.166)Rising sophomore, that's big deal. Are you in two a days now?

Shakeema Smiley (02:46.142)Now we're only two days before I start,

Leah (02:49.6)Okay, that is a lot. And dance, Raygan, what kind of dance do do?

Shakeema Smiley (02:54.03)I really do everything but the most like the most I dance is hip-hop and jazz but I do I do a lot

Leah (03:03.054)Hmm.Awesome, hip hop is my favorite also. So I love that we're both dancers, it doesn't surprise me. So a little insider tip, Raygan and I go all the way back to when her sister Lori was born. I'm gonna share a photo in the show notes of Raygan when she was at one of our meals back in 2019.when Lori was born because it's been a long time. So it's super great for me here too and ICU baby all together to have these two here. So exciting. Okay, so Braelyn, tell me a little bit about what you remember about when Heiris was born. What brought her to the NICU?

Shakeema Smiley (03:51.218)It was her cerebral palsy and her epilepsy. And then she had extra fingers and toes. She still had extra toes, but not extra fingers. And when she was in the NICU, they had like this thing, this, like her arms was out and I think her feet was out, but it was like a, was inside of this gray Like she was laying down in bed and it was something over her. Like she was still breathing something, but I don't know what it.

Leah (04:17.87)Hmm.

Shakeema Smiley (04:21.678)You still touch her hands and stuff, but she was inside of a, a, I don't want to say container, but inside of like a. that what? I don't know what it was, but she was inside of it. Yeah, it was like a bed, but it was something over her body, basically. that's, yeah, that's the only.

Leah (04:34.774)It was like a bed where she was sat inside it. Yeah.Leah (04:41.654)Okay, from when she was born.

Shakeema Smiley (04:48.686)That's when they put her in the NICU. That's when she got out. Because my sister came out a little bit. I think that's why she was in there. Maybe that's why she came out a little bit.

Leah (04:52.961)Okay.

Leah (04:56.364)Okay

Leah (04:59.918)Yeah, yeah, so she was having trouble at birth. So they probably had might have had to do something called cooling. That might have been what she was doing to protect her. Okay. That's amazing. You remember that? What did what did somebody tell you about that? Do you remember anybody saying anything about what was going on?

Shakeema Smiley (05:09.004)Baby.

Shakeema Smiley (05:18.694)Nah, everybody's kind of confused because we never seen him before. But then that's when my mom started studying about everything more. Cerebral Palsy epilepsy, that's when she started actually studying stuff around that time.

Leah (05:22.636)Yeah.

Leah (05:31.384)Mm-hmm.

Leah (05:36.344)Wow, your mom sounds like a superhero.

Shakeema Smiley (05:40.6)Cheers.

Leah (05:42.85)Yeah, yeah, it's awesome. Is Heiris your only sister?

Shakeema Smiley (05:49.239)Yeah.

Leah (05:51.287)Okay, you got two special babies in that house, huh? You and her. Awesome. And Raygan, tell me a little bit about those first days with Lori. What do you remember?

Shakeema Smiley (06:04.264)I remember my mom saying her water broke because we were at the house and I was like, I didn't think it was that time, but then she was like, okay, I have go to the hospital. So I had to stay at a family member's house when she went to the hospital. And like, I guess a day after that, they had said that the baby was born early, but I thought like that was completely fine. I thought it was normal.

Leah (06:18.722)Mm-hmm.

Shakeema Smiley (06:28.438)So I was kind of excited, but then I remember when I went to the hospital to see her, she was really, really small. Like she was very small. So I was kind of confused, but like, as time went on, I kind of like understood, okay, like she's not a normal baby. So yeah.

Leah (06:35.949)Yeah.

Leah (06:50.614)Yeah. Do you remember a time when you visited her?

Shakeema Smiley (06:57.998)Um, I do remember we had to wash our hands a lot when um, we went to see her it was a lot Oh, yeah. Oh, yeah, you do have to do that. So every time I would see her I remember I could hold her hand because she was also one of those little incubator thingies So I remember I could hold her hand through the hole and she would always grab my fingers like you It smells different in here too

Leah (07:16.003)Yep.

Leah (07:21.806)It's really cute. Yeah, really cute.

Shakeema Smiley (07:27.344)yeah. It's a certain, it's not, smells good but it's like a, like a really, really baby smell in there. It's not your regular hospital, you know?

Leah (07:36.384)Hmm.

Leah (07:40.513)that's interesting. You noticed that sensory difference, like it was smelling different, washing your hands a lot. What other things did you notice about any sights or sounds? Obviously, it looks different than another hospital. Remember anything from the noises?

Shakeema Smiley (07:56.044)Lot of cords lot of cords. And my sister had some tubes, helping her breathe, eat, I think, I don't know, all the way around, but I remember, because holding her, she had like the little breathing tube probably, cords, all that stuff.

Leah (08:15.128)Yeah.Do you remember feeling in those times, especially when it was early, you mentioned Braelyn that everybody was sort of confused, which is exactly what we all feel when that happens. It's like Upsie Downtown, which you guys are too young to know that song, where everything is kind of like, what's going on here? Things are upside down. Did anybody tell you anything that helped you to feel more understanding or nobody was really talking to you?

Shakeema Smiley (08:46.954)No, people was talking to me, but I don't know. Honestly, I don't know. But I'm a little smart kid, so I knew what it was from the jump. So I just didn't know what was going on, but I knew what it was. get what saying?

Leah (08:58.861)Okay.

Leah (09:06.402)Yeah, something wasn't right. Wasn't like typical or, you know, air quotes. Okay. And at the hospitals, you were all there. Were you able, I heard you both say that you were able to go in. Was there any limitations on you being there? Or were you able to go with your parents? Tom.

Shakeema Smiley (09:08.418)Yeah.Yeah.

Shakeema Smiley (09:21.166)Yeah. can go with your parents and go by yourself. I think you could stay. No, I couldn't stay. I had to leave. I don't think I could either. Yeah. I think your parents could though. I think they could stay here.

Leah (09:26.659)That makes sense.

Leah (09:33.101)Okay.

Leah (09:36.911)Okay, yeah, because you were, for everybody who's listening, Breylin and Raygan were in different states. So their baby sisters were in different NICUs in different states at different times. They are just amazing friends now. So super, super glad to have you both with different perspectives from different places, right? And we know each hospital is a little different. So I love hearing that you were allowed to go in at your ages that you were. You were allowed to, once you were all,washed up and sterilized a million times, you are allowed to interact with your baby sisters. That's amazing. Was there any programs at the hospital? think your parents have done a good job of trying to help you understand what's going on, right? Sounds like they were trying to talk to you as what they knew, age appropriate, which is good. Were there any programs in the hospitals that helped you guys? Did the doctors talk to you? Nurses, was there child life? Anybody there that you remember?

Shakeema Smiley (10:35.022)I do have a family member that works in the hospital. So she went she was at the hospital that my sister was at So she kind of explained some stuff to me also But then again, I only I wasn't in the hospital for like long periods of time I will only go to see her and go right out so but Other than that, don't think any doctors or anything else like they have talked to me, but yeah

Leah (10:41.922)Mm-hmm.

Leah (11:01.122)Yeah. Okay. How about you, Braylen?

Shakeema Smiley (11:04.781)Same thing, really had no, I had no family in the hospital. I mean, working there, it was just like, I just had to figure it out. When I did, honestly.

Leah (11:18.798)Good. Did you feel comfortable asking questions? Did you ask a lot of questions? You're both very smart, I can tell, and curious.

Shakeema Smiley (11:23.433)Yeah.Yeah, yeah, yeah, I asked a bunch of questions.

Leah (11:27.384)Good, good, I'm glad, I'm glad, glad, Okay, so both of your baby sisters are home. They've been home for a while now as you guys are much older. What was it like, what was your life like when your sisters were ready to come home? What had to change for you guys?

Shakeema Smiley (11:52.846)I remember I was living at my grandma's house. I was looking at my grandma's at the time and she had this room where it was like Like they were all they were painting like they were getting all together for her and they were painting it pink and I'm like I was it was so cute and At the time I thought it was my room. So I was getting so excited I was really excited because I thought it was my room, but then they had moved Lori into it I was kind of a little jealous because I thought it was my room But there was a lot of machines. It was a lot of stuff. And through the time, I also learned a lot of stuff from the nurses, because I was watching a lot. So I was kind of like the backup nurse, kind of, when I was in there. But yeah.

Leah (12:38.614)Yeah, yeah, you were a good helper. I remember that very well. Yeah, so your life had to change a bit when she came home. Well, even when she was there, right, you had to move in with grandma. And then when she came home, she came home with a lot of equipment for a while. Yeah. Do you think that disrupted your life at all? Made it different?

Shakeema Smiley (12:50.669)I remember a lot of the attention was on her. So it was because I was the only child. So a lot of like, I was so used to always getting everything I wanted, like just getting all that attention, which focused on me. But after that, would kind of just like, I'm right here, like, hello. But because I don't know when, because I was also the youngest. I was only the youngest, like out of everybody, my cousins, my of the siblings are my dad's So, you know, I was a baby, so everybody was focused on me. But I kind of got used to it because I also like, I also put myself just to Lori also. So, kind of got used to not everything being about me, but I had to learn that a little bit the hard way.

Leah (15:08.856)Mm-hmm.

Leah (15:17.76)Yeah, but you sounds like you really embraced being a provider, right? Becoming one of her care providers, her big sister. That's a big role. That's a big role. And what about you, Braylen? What do you think had to change for you in your life, having a little sister in the NICU?Yeah.

Shakeema Smiley (15:40.931)Kind of like raven, I was the only child for 10, you know, eight years, seven years, so I got everything I wanted, chillin'. But then my sister came, I had to like step back a little bit and just chill. then, it didn't change my life. Life is still the same, it's still, everything was the same. Just had to, we just wasn't as free as much, cause we didn't know.how heirs, you know, could, if she could get sick or not, we can't bring certain equipment, medicine. That's another thing I had to learn how to do her medicine, feed her, G2. Before she was on G2, and we had to her milk, you had to put it simply thick in the milk.

Leah (16:20.227)Mm-hmm.

Leah (16:31.15)Mm-hmm.

Shakeema Smiley (16:34.967)would make it thicker, because that's how she could swallow it. So I just had to, I paid attention to a lot of stuff. I still do now, I can take care of it. If I had to, I could take care of everything I had to, but I don't got to.

Leah (16:48.078)Wow. So even back then you were, you got trained on how to feed her with a G tube, maybe how to feed her by mouth too when she was doing that. Were you giving her bottles ever?

Shakeema Smiley (17:00.651)Yeah.

Leah (17:00.674)Wow, so you both really embrace the role of big brother and big sister in that care team. We talk a lot about the doctors and the nurses being the care providers, like in quotes, and then we also include the parent that they have a role. They are the parent head of the medical team. It sounds to me like we also need to be saying the big sister role, the big brother role in the healthcare team as well. Does that sound right to you?

Shakeema Smiley (17:31.875)Yes. Yeah, it's an overlooked problem too. It might be overlooked. Man, someday she might have stay home for school. Because who knows? If your dad's not there, don't got anybody helping you and your mom, then your mom might need to stay home for school. I had to do it before and watch errors all day. Now, I could still do my work as it was with President School for a day because I had to watch errors because she didn't have no nurse.

Leah (17:34.114)I think you're right. Yeah.

Leah (17:52.205)Yeah.

Leah (18:00.12)Yeah.

Shakeema Smiley (18:02.669)So, yeah.

Leah (18:02.926)Yeah, you really had to step up both of you, right, to cover the gaps in the family, right? That have by having a baby in the in the NICU, right? And then coming home with medical needs. It sounds like they both girls came home with a G tube. Did Heiris have to have a tracheostomy breathe through her little her neck or is she breathing by mouth?

Shakeema Smiley (18:09.676)Yes.

Shakeema Smiley (18:25.901)She really loved that.

Leah (18:25.974)Okay, so you had some similarities there too with the G-tubes too. Okay.

Shakeema Smiley (18:33.507)Mm-hmm.

Leah (18:34.38)I'm really impressed by you both. That's amazing. And it gives me a lot to think about in my role in helping families and siblings and helping our nurses and doctors who are out there listening right now about including you all in the baby's life right away when you're ready, right? Some kids may not be as ready as you both are or were at the time.or willing.How do you think having a baby in the NICU, so having your little sisters in the NICU, changed you as a big brother or big sister?

Shakeema Smiley (19:21.283)I don't think it did. Or, possibly, yeah, it did. But it didn't really make, like, no big difference. God was still the same. I was still the same person. I was just more aware.

Leah (19:24.589)Yeah.Leah (19:28.717)Yeah.

Leah (19:34.146)Tell me more about that being more aware. That's what I'm wondering.

Shakeema Smiley (19:39.699)I was more aware, because Heiris a wild baby regardless. You can't leave her on the bed or on the couch by herself, because she might roll off the bed, or she might be at the end of the bed, or Heiris is still wild at the end of the She's just like regular kid. She's still wild with these little things, you know what I'm saying? So I had to be aware, or say I'm playing the game and my mom had to use the bathroom real quick.

Leah (20:05.09)Mm-hmm.

Shakeema Smiley (20:06.901)She might bring heiress in the living room with me or in my room and sit her on my bed and she got run out. So I gotta look back every once in a while, every 10, five minutes, make sure she good, she's she's not, she's not or she didn't use the bathroom, anything like that. So you gotta be aware and pay attention.

Leah (20:25.858)Mm-hmm.Yeah, it was a little different. You have to have a little bit more awareness probably than if she were a typically developing baby who hadn't been in the NICU.

Shakeema Smiley (20:32.427)Yeah, it's way too.Leah (20:40.59)Is that true? Yeah.

Shakeema Smiley (20:40.823)ThankYeah, I was like, the Nick you probably could have got some babies even more sick. I know it's clean in there, but that probably could have got babies even more sick than it was the first time.

Leah (20:56.706)Hmm. What do mean?

Shakeema Smiley (21:00.745)Like, I feel like, cause how do explain it? Cause near that time COVID was coming up, near that time when our sisters were born. So they all in the hospital with all that stuff, other people sick, you know, it's like they could have, they never felt fresh air in their life other than hospital air.

Leah (21:17.998)Mm.

Shakeema Smiley (21:28.451)So when they first come out, like everything's weird, you know? Like I don't know how to explain it, like the NICU, it's good, but I'm just saying it probably, who knows what it could have did? Who knows what goes on in the NICU?

Leah (21:32.247)Yeah.

Leah (21:43.353)Well, I think you do. You were there, right? Yeah. Yeah, you're right. It is a very sterile environment. There isn't any fresh air. There's light through windows only. Maybe if you have a room with windows, it's dark. Yeah. Yeah. I love that you thought about that, about Heiris getting her first breath of fresh air. Were you there when she went home?

Shakeema Smiley (21:56.851)It's dim. It's really dim in there. It's really dim in there.

Leah (22:11.374)Do remember? Did she notice that she was in a different place?

Shakeema Smiley (22:11.393)Yeah. Yeah.

Shakeema Smiley (22:16.981)Yeah, she did. Ares is aware too, herself.

Leah (22:18.582)Yeah, yeah. And what about you, Raygan? What do you think?changed in you? Again, not like your daily like, I couldn't go here or there. like, how did it having a baby in the NICU impact you?

Shakeema Smiley (22:38.147)I feel like my responsibility and also what Breedon said, being aware, because...like you never know. I remember she had this machine that it would like beep every single minute, but you had to press a button in order to like to stop beeping. So like if you didn't hear it, it was just going to keep going off and off and off and off. So I remember that making me more aware of like being with her a lot. Even when the nurses were there, I was still with Lori and my responsibilities changed when I had to like

Leah (22:52.834)Mm-hmm.

Shakeema Smiley (23:12.567)Why? Okay, I gotta like tune into her because you know, she's not one of the normal babies. So she needs more help with things. But yeah, just my responsibility and being more aware.

Leah (23:24.504)Yeah.I think it makes perfect sense and I thank you both for sharing that because I know it's not, it's a very private part of your life and it's really important here. So do you think having a baby in the NICU, or so a little baby sister in the NICU prepared you for being a big brother or sister differently besides these two things that we talked about, being aware? I think that's.

Shakeema Smiley (23:53.303)Yeah, it's gonna help me be a father also, because it sets a level of discipline you have to It teaches patience. Yeah, a bunch. yeah, that's patience. For real, I didn't think of that. It does, because you gotta wait.

Leah (24:02.307)Mm-hmm.Shakeema Smiley (24:18.819)because their development is different than the regular human. Everything is different. But I believe a non-verbal premature child is just as verbal as a verbal regular mature child because they're just as smart as us if you think about it.

Leah (24:22.552)Yeah.

Shakeema Smiley (24:41.539)Cause they have to talk with their eyes, their body language. Like they can't talk with their mouth. So it's like, they have to, you have to pay attention to That's what I mean by where you got to pay attention to stuff. So I think it has to be a better father, a better human, better person.

Leah (24:57.835)Yeah.Wow, yeah, both of your ability to tune in to other people, like in such a subtle way that nonverbal like you're talking about is something I wish for everybody to be able to do. That's very astute of you, very wise, very wise. Do you know anybody else who had NICU brothers or sisters in your school?

Shakeema Smiley (25:00.332)Hmm

Shakeema Smiley (25:26.723)I don't even know if Raygan had one till like two years ago. think. I don't even know sometimes.

Leah (25:33.228)Okay. Okay. How do you guys know each other?

Shakeema Smiley (25:39.285)School.

Leah (25:39.375)School. Okay. Okay, cool. Cool. Cool. Okay, so we know that the folks who listened to this episode, everybody out there who's listening, thank you, wanna know a little bit about what we can do better. So what do you think as parents? And it's not a, you know,

Shakeema Smiley (25:47.619)you

Leah (26:08.49)a statement to your parents might have been something they did great or something you wish they did. What could parents in general? It's again, not a statement to your own experience, but what do you think parents could do to help their older siblings, their older children through the experience of having a baby in the NICU? What would you hope them to do?

Shakeema Smiley (26:35.223)like to help them more, like to help them help us, it will be like, save their patient with the babies. I feel like they should be patient with us too, because we're also learning that like, you know, it was a process to this. So I feel like they should also be patient with us, trying to like process everything. yeah, just being patient really.

Leah (26:58.37)Yeah.

Shakeema Smiley (27:05.111)That's what I think.

Leah (27:08.494)What about you, Braylen, anything?

Shakeema Smiley (27:13.993)I this... Wait, I'll say the question one more time.

Leah (27:18.862)Sure. What do you think parents should do to help their older children in the NICU?What would be some good things that you think?

Shakeema Smiley (27:31.171)probably give them more clarity on what's going on. Because they might say everything, but some parents might sugarcoat. Like my parents, they don't sugarcoat nothing to me. Nothing. Everything we talk about is straightforward because in the real world, no one's going to sugarcoat nothing or baby you or tell you what you want to hear.

Leah (27:35.639)Okay.

Leah (27:56.067)Mm-hmm.

Shakeema Smiley (28:00.223)So I feel as if you just gotta hear the real and that's how you gain all that other stuff. The patience, the awareness, it's gonna come. Because you'll move different once your parents talk to you about what's really going on rather than just saying, your sister did this or she's a little dad.

Leah (28:09.027)Yeah.Leah (28:20.728)Yeah.

Shakeema Smiley (28:26.307)No, you just got to tell the truth. That's how I feel.

Leah (28:31.574)Yeah, I agree with you there. That sounds really profound and we will make sure folks are hearing this because it is important. And what do you think you might say to another brother or sister, right? So right now we're in many hospitals here in the state of Florida and people who listen are in hospitals around the world. OK, so you know, people who listening here and they have.Babies in the NICU who have big brothers and sisters. If we could transport you, which we're gonna do with this episode, to sit with that big brother or big sister, what would you want them to know? What would you say to them?

Shakeema Smiley (29:15.423)I'd say that like you're not alone because there's also other teenagers with the same problem. So it's normal, but it's not normal if that makes sense. Like you have other people that go through the same thing. But yeah, that's what I would say.

Leah (29:35.405)Yeah.

Shakeema Smiley (29:41.195)Me, I feel, man, just keep going. Don't stop. Some kids in mature, they might say something about your family. Don't let it get to you. It's gonna get to you a times. It'll get to me, but when you get a level of respect from people and you know yourself and you know your family and your sister or your brother, whatever.

Leah (29:54.915)Yeah.

Shakeema Smiley (30:11.359)It's not gonna phase you as much, but when you're growing up in middle school, some people's immature, some people is just rude, and some people like to joke around, but some people don't like joking like that. Some people will really get messed up off of these saying stuff like that. And it's a reason why everybody's people not, I mean.family members not in the making. Everybody's family can't handle that.

Leah (30:40.334)Right, right. So you're referring to, you know, other kids kind of picking on you or saying things that are not kind or not helpful.

Shakeema Smiley (30:55.435)Yeah, yeah, I didn't get picked on or anything like that. But there's been times when somebody say something. But I never got picked on.

Leah (31:01.826)Yeah.

Leah (31:05.804)Yeah, but they'll say something that hurts. And you're saying, know yourself, stay inside, it's understandable that it hurts to hear, but you're bigger than them. It's their problem, not yours. Does that sound right? Yeah, yeah. Something else I heard from you both today is to lean into it. Right? This is happening for you and it's happening.

Shakeema Smiley (31:10.072)Yeah

Shakeema Smiley (31:23.063)Yeah.

Leah (31:36.235)It's out of your hands, out of your parents' hands, out of your baby sister or brother's hands. And it's a new opportunity to learn and grow and become really, I mean, you guys are kind of like junior nurses. If you're doing all these feeds and doing all the care and the diapers and the things, that's stuff that a lot of adults don't even know how to do most. These are things that arereally incredible about you both and our NICU big brothers and sisters is you get a set of skills that a lot of most adults don't even have and you're so much younger. Do you think

Shakeema Smiley (32:18.793)And you gotta keep your house clean. That's another thing. You have to do that. When they come in from that NICU, they were in a very clean environment, regardless of how whatever's going on, it's clean in there. They don't even wear their outside clothes. were like, you know when it was COVID at first, you were in there, that they had them little masks and all that. Not like, look.

Leah (32:21.686)Yeah.Leah (32:39.277)Yeah, the gown.

Shakeema Smiley (32:46.915)They had an actual mask on their head and this little body suit you know what talking about? That's how they wear You know what they wear in NICU. They wear that, but it's just like white and you can see their face and they can talk to you. But they have, they don't even wear outside clothes. They have gloves on. They don't do none of that stuff. So it's just a whole different environment.

Leah (32:51.798)Yeah, yeah.

Leah (33:12.042)Yeah, you had to be the post-NICU home. So you had to be part of making the house clean, probably still washing your hands more than you feel like you would have ever done in your life, even at home probably. Does that sound right? Yeah? Yeah.

Shakeema Smiley (33:26.955)Yes. My little baby cousin, he's not, he won't make you regular mature baby, but you still gotta wash your hands before you hold him, because the immune system will eat. So for with the baby with, that's premature, they're using even weaker than a fresh newborn baby. So it's just another level.

Leah (33:48.735)Yeah. Yeah. So you have, play a big role in, I mean, that's the environmental services, right? The people at the hospital are taking care of that. You come home, you guys are part of not just the nursing team. Now you're part of the environmental services team, right? You got to do the cleanup. You got to keep things clean. You're a part of nutrition services. You got to do the feeding, right? This is a big role for our big brothers and sisters.

Shakeema Smiley (33:56.567)Yeah.

Shakeema Smiley (34:13.891)Yeah, my parents are also really strict because not parents, but my mom and grandma, they were also like on being clean because it was also during the time of COVID. So they were definitely cautious of going outside, washing hands, wiping everything down. Yeah, my mom and dad. Changing your outside clothes. Yeah, it was a lot. My mom and dad were like that too. And in COVID, everybody know if some girls were mostly boys.

Leah (34:18.21)Yeah.Leah (34:33.603)Yeah.Shakeema Smiley (34:43.299)You was on the game all night. you had to like get yourself together in the morning the next day. Because you just you up all night so I couldn't have been loud because she's sleeping. So my sister, it's two ways she can have a seizure. One, she doesn't get enough sleep. Or she's sick.

Leah (34:45.41)Hmm.

Shakeema Smiley (35:10.729)And we think if she gets too excited maybe, cuz my dad was home with us for past couple days. And I think she had a seizure on one side, but I think it's cuz she was just really excited. Cuz we know what can trigger it. But we know for sure is when she don't get enough sleep and it's when she's sick or about to get sick. What we think is just cuz she was really excited cuz it'd been a little while.

Leah (35:36.974)Because she was real happy. Yeah. Yeah, so you have to kind of manage that too. Always being more aware, like you mentioned before, being more in tune with the environment.

Shakeema Smiley (35:40.355)Yeah.

Shakeema Smiley (35:51.299)I ain't even lie, the first time I saw that, my mom was scared. And it's not like no, like she's, face is turned, her lips turned blue. She doesn't joke or nothing like that. But it's just still, a mom, imagine being a mom, we just came back from a woman's jail or whatever it was going. And we in the house and she's holding ears for the ears. So I haven't seen that scared for anybody who never didn't get used to that. So.

Leah (36:00.513)Okay.

Leah (36:16.834)Yeah. Yeah.Hmm. You're on, still living on a little bit of edge. Does that sound right? Yeah. Yeah.

Shakeema Smiley (36:29.837)Yeah.Leah (36:34.284)If you look back on your time when your sisters, Heiris and Lori were in the NICU, and if you had like one wish, one magic wand thing, you could wave it and it would change something about that time. What do you think it would be? And also it could be nothing. If you're like, no, was fine.

Shakeema Smiley (37:00.011)This is what I was saying.I'll, if I could, I'll make errors. Not even have to go through all that stuff she goes through. But it teaches you things at the same time. it's, it's more as a blessing than it is as like a problem or like a, another priority. Like it's really a blessing because she's different.You know, everybody's, you go look at some people, everybody act the same, look the same, talk the same, walk the same. But having a NICU sibling or a premature sibling, it's more things you learn. It opens your mind. It opens your knowledge. All of that, you know?

Leah (38:00.738)Yeah.Shakeema Smiley (38:02.091)So I feel like it's, if I could though, I would make it where she's just regular, but it's all right if it's, if that's, you if you couldn't do that then it is what it is. Cause you accept it regardless, you got to.

Leah (38:11.18)Yeah.Leah (38:18.146)Yeah. Yeah.

Shakeema Smiley (38:23.523)That's what I say. I think what I would do if I had a mind, what Braelyn said, I would try to make her just like a normal baby, like a normal healthy baby, which she is, but I wouldn't want her to, like he said, go through what she had to go through. But yeah, that's my answer.

Leah (38:24.344)Thank you for sharing that.Leah (38:43.843)Yeah.Leah (38:48.15)Yeah, makes sense. Is there something about the, like, if you think beyond your sisters, what do you think every hospital should have for big brothers and sisters?to stream it up.

Shakeema Smiley (39:05.634)I don't know. Maybe whatever your brother's here to diagnose with, it's a little book on it and it gives you a book to read. Something like that.

Leah (39:16.706)Mm-hmm. Okay. That makes good sense.

Shakeema Smiley (39:21.635)I'd say, yeah, I'd say if like the sibling has like a hard time processing what their sibling is going through, probably like a club or something where like they know they're not alone. And just, yeah, just know they're not alone. It needs to be visual too. Yeah. Like pictures in the book of what goes on in the brain. Cause this-

Leah (39:36.972)Mm-hmm.

Leah (39:48.259)Yeah.

Shakeema Smiley (39:51.139)It's just as interesting as a regular person's burning because it's way different. Like my sister, it's how she processes things is different from how I process things. She goes through a whole harder, longer process. So that's interesting at the same time.

Leah (40:10.74)Mm-hmm. Yeah. That makes sense. A club, a place where they can feel welcome to, even if they can't be with their baby sister or brother at the bedside, someone to say, hey, you're not alone.Yeah. Okay, awesome. So at ICU Baby, we talk about the word hope and I'm actually wearing our Hope Parade t-shirt today. It's our annual walk at the zoo because we like to bring back all of our families every year and walk around the zoo and celebrate NICU time. What does that word hope mean to you?

Shakeema Smiley (40:52.365)Safe.

Shakeema Smiley (40:57.855)I say believing. Yeah. Honestly, this might get This might get quoted. Because this is the rest of it. I honestly feel I don't hold it no more. And it's not a bad thing. I just have too much faith to hope. I have faith it's just going to happen. I don't got hope. Because hoping is...

Leah (40:59.096)Yeah.

Leah (41:03.543)Honesty.

Shakeema Smiley (41:26.627)When you hope for something, it's still doubt in your heart. But when you have faith for something, it's no doubt. It's gonna happen. just gotta trust Him. I honestly feel hope I just have faith. And it just, you know.Leah (41:37.934)Okay.

Leah (41:41.431)amazing.Anything else about that, Raygan?

Shakeema Smiley (41:49.507)Um, like I said, my word would be like believing because if you don't believe that everything's gonna turn out fine and like it's just like what are you gonna do? Because you have to like at least put some type of trust in the process of what's going on. But yeah. So we say my school, my team, coach, Coach Donald, so we say trust process.

Leah (41:52.024)Mm-hmm.

Leah (42:09.196)Yeah. Awesome.

Leah (42:16.814)Trust the process. This is true. This is absolutely true. Yeah, we share that with our families too, and the nurses and doctors talk about that too. We're gonna get there. We're gonna get there. Amazing. Okay, are there any other things you'd wanna share with any of our listeners out there?

Shakeema Smiley (42:19.971)just surprised.Shakeema Smiley (42:41.192)Nah, nothing, I think I do it at least.

Leah (42:44.366)You're No, you're great. Y'all are outstanding. And I am so, so grateful that you sat down with us today. And I hope this will be something that we can do again as you guys get older and wiser. And I think our world is much better for the two of you being in it and for your sisters being in it and your parents being in it. And I feel really, really, really grateful to have had the chance to chat with you guys today. And I hope that we'll be able to talk again soon.

As I mentioned in the intro, before we were talking with Braylon and Reagan, we are being joined here by Lina Acosta-Sandal, whois a licensed marriage family therapist and really specializes in early childhood development and has helped so many folks, including myself, understand what normal development looks like and how to help our kids through tough times. So, Lina, thank you for joining us today to give us some tips as parents in the NICU.What can we know about the developmental age? Most of our other children, so the older children are between one and, you know, 15 max, one and 10 usually, they're pretty young. What can we know about that timeframe and going through a stressful time like the NICU? This is a traumatic event for the whole family. What are some things we can understand about our older children during those early years? 

Lina Acosta Sandaal

I think something that a lot of adults miss is that children in early childhood, definitely those under five, but 10 and younger, use our nervous system, our mood, to regulate their own. Right? So they are constantly, I like to give the picture to parents of like, they're constantly taking like a plug from their nervous system and plugging it into yours.Right? So in a scenario where you are at the NICU, you know, I just frightened the bejesus out of you because I just told you they're plugging you into your nervous system. And I know that your nervous system is stressed out. Right? So I don't expect any parent to be perfect, but what all of the children need is clarity and confirmation that what they're feeling is correct. And what I mean by that is if you're a littleperson tells you mommy are you happy because they don't ask you are you sad and they don't ask you why you're scared they ask you mommy are you happy right you have to say to them you're asking me because you see my face so the number one tip I will tell you is be age appropriately candid with what is happening with you because then when they plug into your nervous system they don't have to feel crazy because if what you're saying to them no mommy okaydoesn't match how it feels, then that's where the lack of safety comes in. That's when you have the challenging behavior, right? And another thing is that a child in a situation where there's this high stress and the high stress is not bad. It's the natural human response of being in the NICU is to be scared and stressed. That's what you're supposed to be feeling, right? It's more about taking care of the waves. But for that child, What they need is as much consistency as possible, right? Make sure that you're still maintaining the routine as best you can. Right. And also, I know that a lot of parents with siblings feel so guilty that they're not with the second child. And, and that's, that, that becomes part of the big stressor. It's very important to predict when you will be with them.but then when you're with them, be present. It's not quantity of time, it's quality of time. And then the rest of the time, make sure that they are being taken care of by that soft, gentle, loving, balls of love second person, because that's important. 

Leah

Even just this week, I've had all the spectrums, right? The parenting. array where it's one family saying, thank goodness I don't have an older child. I can't imagine dividing myself. And the next one saying, thank goodness I have an older child because I know that I can get through this and I get some time to spend away from them. And another one, like everyone has their own thing and we're all sort of like multi-folding our guilt, right? So I love that you mentioned that. And it's just, it is a large burden to bear. I really appreciate you mentioning that.regulation because we talk about it a bit for our babies too, right? What we can do with our sensory systems to help our babies with their sensory systems. And it's reassuring to know that that is also true for our older kids too. Our older kids too. Amazing. Wonderful. Thank you so much for these quick tips and we look forward to having you on your own episode soon.

Leah

joining us now is Raygan's mom, Shakeema. and, y'all have met her in the past from a previous episode about being a trach mama. and just wanted her to come in so y'all, can sort of see the full picture here. And I wanted to share with you, Shakeema, that your daughter and Braelyn are extraordinary and you all have done a great job. This is out to Braelyn's mom and dad too out there. you've done an awesome job with these kids. They're, our future.And I really hope that they maybe will consider a job in healthcare in the future and become neonatologists themselves maybe and take care of many generations of other kids as they've done a great job with their own little sisters.

Shakeema Smiley (46:22.197)You know it.

Shakeema Smiley (46:32.215)Yes, I would love that. That would be an honor. If she would be in the nursing field or something, that would be great. But I knew that they would do well with this. And it's always great to hear the other side of, know, get their perspective as siblings. So I'm excited to see.

Leah (46:37.933)Yeah.Leah (46:50.189)Yeah.

Shakeema Smiley (46:53.729)the outcome of this and for you guys to come back and get updates and see how things are going, you know, in a year or so. Because these are high school students, so they'll be preparing for college soon and all these great things. Raiden is a dancer, Braelyn is a football player. So they have a lot of amazing things going on and they also have great grades. So even with...

Leah (46:57.538)Yeah, for sure. Yeah.

Leah (47:15.948)Yeah, that's clear.

Shakeema Smiley (47:19.855)Yes, even with navigating and helping out their siblings, they are still able to stay on top of things that are important in their lives. So I'm excited for them as well.

Leah (47:27.958)Yeah. Awesome. Well, thank you all so much, Braelyn, Raygan and Shakeema for helping us put this together. It has been a true honor. And as I opened this episode today that this is the best day for Beyond the Beeps yet. And I'm so excited for the world to hear this and for all of you out there who are sitting at your baby sister or brother's bedside or you're at home or at a grandma's house.

Shakeema Smiley (47:46.851)you

Leah (47:57.07)Trying to figure out what's going on. Maybe you're having big feelings. Maybe this is all cool for you to Braelyn and Raygan and I want you to know just like they said you are not alone. We are here with you and We look forward to sitting with you again on our next episode soon. Take gentle care everyone