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Rhandyl: Hey, y'all, this is Rhandyl, and September is NICU Awareness Month. If you've been listening to us for a while, you know that my daughter, Remi, spent the first 15 months of her life in the hospital before ever going home.

So the NICU is never where you imagine your baby spending their first weeks or months of their lives. The feeling of leaving the hospital with an empty womb and empty arms is something that is indescribable, and a lot of parents are fortunate to eventually begin their parenting journey at home, but a lot are not.

The fragility of these tiny lives are in the hands of Jesus and the neonatal medical staff. I just wanna thank all the neonatologists, the NICU nurses, respiratory therapists, social workers, child life specialists, lactation specialists, dieticians, the list goes on. The care and attention that these people give to the most vulnerable babies and their parents is just unmatched. [00:01:00] And also to the moms out there that have donated breast milk to the NICUs, we thank you so much.

Today's episode we recorded a while back, and we are so excited to share it with y'all. Here's a mom's story about her 24-weeker twins and their uphill battle at life

Hey, y'all. Welcome back to Raising Disabled. Today we have Heather Evans on. She is a mama of two, and she is also a podcast host with Mama Sisterhood. We are so excited to talk with you today, Heather. So if you wanna start out by introducing yourself and your family, where you live,

Heather: yeah. Well, thank you so much for having me. I am a podcast listener of yours- ... and I really respect what you both are doing. So like you said, my name's Heather Evans. I live in a suburb of Kansas City on the Missouri side. I am married, and I have boy-girl twins, Hannah and Gavin. They are [00:02:00] 12, so- yeah. ... we're in tweenhood right now. And yeah, so they had kind of a crazy entry into the world, being born at 24 weeks, which we can get into, but that- Mm-hmm ... is where we are now. 

Deonna: Yeah. Tell us about the time of leading up to them being born, and just kind of what their initial entry into life was like.

Heather: Yeah. Without going too far into it, it was kind of a long story to even get to having them, because we... struggled with infertility for four years. I had to have multiple surgeries and different things like that. And so my husband and I had actually been through four rounds of IVF. And- oh, wow ... e- eventually- Yikes ... so we live in Kansas City. Our last two rounds, we ended up traveling to a different clinic in St. Louis, because- Mm-hmm ... we liked that better, and we ended up using an egg donor, and that was our very last chance. We used all the money. We've used all the mental capacity." And on our last chance, we got pregnant with the twins.

So the pregnancy itself, It [00:03:00] was very normal, actually, until the moment it wasn't, when everything- ... kind of just exploded. Yeah. But really, the pregnancy was completely fine, especially for having twins. I had, no real complications. They were watching me closely. I had an amazing doctor, who's now retired, who knew our fertility story, and so he was probably watching me a little closer than normal, which is one of the many people that ended up saving their lives.

And so- mm-hmm ... at 20 weeks we went in for the ultrasound and said we were having a boy and a girl, and we were really excited, 'cause we knew that was it for us. And at about 21 weeks-ish, I think, they had done a check of my cervix, which isn't necessarily, or at least at the time wasn't necessarily standard. It was just something my doctor wanted to do, 'cause I wasn't having any symptoms. And they found out that my cervix was doing what's called funneling. So basically, when you have a baby and you dilate, and your cervix opens, mine was [00:04:00] doing that from the inside, and it was doing it at 21 weeks. Ugh. Oh. And they don't know why twins makes it a higher chance. They actually call it... It has a horrible name. It... They call it incompetent cervix, which is completely ridiculous.

. But they basically said, "Go home on bed rest. Come back the next day." The next day it was not changed. Same thing for the next day, and it was a weekend. And so then they said, "Stay on bed rest, come back on Monday." And when I went back , things had actually progressed a lot worse. And so I was dilating, effaced, and this was at 22 weeks and five days. 

So they put me in a wheelchair. They're like, Whatever you do, don't push." Which is, like, why would I push? But they took me to the hospital, and they really thought they were gonna come that night. Yeah. And this was 12 years ago, so at the time my hospital would not try to save a [00:05:00] 22-weeker. Right. They actually are trying to save 22-weekers now. Mm-hmm. But- 

Deonna: Oh, I didn't know there was, like, a cutoff or something. Oh, yeah. Wow. 

Heather: I, it, and it will depend on your hospital, too. Yeah. So my hospital at the time 24 was considered viability. 23, whether or not they intubated and tried was up to the parents. Wow. And then 22 they would not try unless the baby was, like, giving a really strong effort. Yeah. And yeah, now they're trying to save 22-weekers. But- So got admitted, and what was crazy was the whole time I didn't feel anything. I didn't have bleeding, no contractions. They hooked me up to the monitor and said I was having contractions, I just couldn't feel them. Mm-hmm. And, they pretty much said, y- you can't go to the bathroom. You have to use the commode because they might just slip out, basically. Which is so crazy. 

Deonna: That is so crazy. 

Heather: Yeah, Yeah. And very scary. They did have some medicines They gave me some [00:06:00] shots to speed up the lung development- mm-hmm ... which probably saved, for sure, my son's life, maybe my daughter's as well. And there was one medication that they could use to try to stop the labor. They could only do it for a few days or something, but we did that. And they were pretty much preparing for them to come that night and- ... not make it. And so we hadn't even picked names yet. We thought we had a long way to go, and so- Oh, yeah. 

Deonna: Yeah, you're, like, only halfway through. 

Heather: Yeah, and we had just- found out it was a boy and a girl, and so I, type A, I had my list on my- I think it was my phone. I don't remember. I had a list. And so m- my husband and I stayed up and didn't know what was gonna happen, but we wanted to have names for them- Right ... no matter what, that we had already picked out. We didn't want to have to pick them out after should something bad happen. And then the doctors had said if we knew the names, they wanted to know so they could start [00:07:00] talking to the babies right away. So- Aw. We stayed up and we picked our two names, and they gave me some medication to help me sleep. And to everyone's surprise, they didn't come that night. And so we managed, with the amazing doctors, to keep them in for 10 more days. Mm-hmm. Wow. And so, and at that point they- 

Deonna: And you were in the hospital the entire time.

Heather: Yes. Yeah. And I wasn't gonna go home. They're like- No ... "Well, you're here for a day or eight weeks." 

Deonna: Yeah, till you have them. 

Heather: Yeah. Yeah. And they gave you this piece of paper that basically said, they broke it down by, boy baby, girl baby your race and whether or not you got steroids, and basically it was a percentage of chance that they might live. And every week it got just a little bit better. And this is something I never knew before, like especially a [00:08:00] male Caucasian baby, they tend to do the worst. 

Rhandyl: Yeah, they call them wimpy white boys. 

Heather: They do. They call them wimpy- Wimpy white boys ... white boys. And so- 

Rhandyl: Oh, I learned all of that in the NICU too. I feel like that's- all this lingo ... continued on- Yeah ... until they're- 

Heather: Right? ... a lot older. I had no idea, and so, he was in the- that's really funny ... not great category, and my daughter was just a little bit ahead. But, so at 23 weeks they came in with another form, and they were like, ". Should they come at 23 weeks, do you want us to try to save them? Do you want us to try to intubate?" Yeah. And we did, and so we signed the form. And then we made it to 24, and at that point they said, "Okay, we will try to intubate."

And , it wasn't much longer after we got past 24 that I woke up in the middle of the night one night, and it was the first time this whole experience that I had felt... I wouldn't, it was a contraction. It didn't feel like a contraction for those moms who've been through [00:09:00] true contractions. It felt like a period cramp. Yeah. But it was the first time I had felt anything. And then when I got up, there was some blood. And so, they called in everybody. The lights were bright. They were trying everything, and they were pretty much like, "Okay,.. they're coming now." Yeah. 

So from there, we went into emergency C-section. However, it wasn't a general anesthesia. I was able to be awake, and so my husband was able to be there. My hospital was very good about telling us what was gonna happen before it happened, which, so it was scary, but at least we knew that was what they were expecting. Mm-hmm. So they said, "When they're born, highly unlikely they'll be able to breathe. They won't be able to cry." Yeah. " You'll get to see them for a millisecond, and then they're gonna go to the NICU, and they're gonna be gone up there." Yeah. 

And so we were in the C-section. They got my daughter out first. They held her up above the sterile [00:10:00] drape for, I mean, it was literally a second, and then they took her away. Each baby had a team that was already there with a- Mm-hmm ... a NICU doctor, a nurse, a respiratory therapist. Yeah. I don't remember who else. There was, like, 30 people in the room. And so they took her. Love that. Got her intubated pretty fast,

and then... My son was transverse, so he was, like, horizontal, so he was harder to get out. They finally got him out, same thing, held him up for a second, and then took him over. So my husband's watching but kind of staying back out of the way, 'cause, there were so many people- Mm-hmm working, and he kept telling me- Yeah ... he's like, "They're having trouble with him. They're having trouble with him." And I found out later- Oh, man ... it took three times to intubate, and then they... He had a heartbeat, but it was really slow, and so they were having to do chest compressions. And so- the next thing that- 

Deonna: On a baby so small. That's crazy. 

Heather: Yeah. Okay. They were... Yeah, they were a pound and a half. 

Rhandyl: I was gonna ask how much. 

Deonna: They were tiny. Yeah, 'cause, like, when you said it wasn't that bad of [00:11:00] a contraction, I'm like, "How bad would a contraction be with a baby that's that small?" 

Heather: Well- yeah, and I mean, I have heard stories. Like, when I was talking earlier about how the babies can kind of just slip out, that it truly can happen- Yeah ... when they're that small. 

Deonna: That's nuts. 

Heather: So, yeah. . And one thing I remembered about this, because it was all, and you guys know how it is in the m- everything is such a medicalized experience, and I remember when they were running my daughter's isolette past me, there was a NICU nurse, and she ended up being one of our very favorite NICU nurses. And again, they pause for a millise- well, they paused with her. They didn't pause with him, 'cause he was not doing well. Mm-hmm. And she paused and she said, "Congratulations, mama." And that's the first time I was like, "Oh, my gosh I'm actually a mom." A mom. Mm-hmm. 'Cause everything is just, is this medical emergency. You're not thinking- Yeah ... about these are- yeah ... your children, and you just had babies. And so I'll never f- forget that. And so, and 

Deonna: then- well, she was giving you a positive experience- Yeah ... in the midst of- Yeah ... chaos. The bad.

Heather: Mm-hmm. Yeah. So [00:12:00] she was wonderful. So they whisk them up to the NICU, and my husband was like, "What do I do?" And so I sent him, and, then everybody's gone. Then it's just you, and I think one OBGYN, and a nurse- Yep ... and quiet now. Yeah. And crazy. And - I went to recovery. So what they did, and I barely remember it, but in this hospital they'll take the mom's entire hospital bed up to the NICU. 

Rhandyl: Oh, that's amazing. That did not happen in my- Whoa ... experience.

Heather: Yes. And I had a C-section, so I had to lay flat. So they took it up, and I mean, I can barely remember it, which may honestly be good because it was a pretty scary time up there. Oh, yeah. Yeah. But yeah, they take you up there so that you can see the babies, and then they take you back down to recovery. And they put me... and again, I've heard so many tough stories. , My hospital was amazing. They put me at the very end of the hallway, so there were babies on that hallway, but I couldn't hear them as much as if I was in the middle. That's good. They [00:13:00] were very conscious.

And the crazy part, so- I think they kind of knocked me out with medicine. So then I woke up around midnight, because that's when they first have you sit up, and they had you try to pump for the first time. Mm-hmm. And I mean, at 24 weeks, your body is not prepared to do that. And I remember- And 

Deonna: that's what I was gonna ask. Like- yeah, it was- your body's "I need 20 more weeks- right to get ready." 

Heather: So the first time, it really, it doesn't do anything. It, it- Mm-hmm ... I mean, it doesn't produce anything. It's just kind of like trying to get things started. Yeah. And I remember it was super painful, of course. Just had a C-section. Yeah. Took the nurse to help me sit up, tried it, laid back down.

And then an hour later, a nurse practitioner came down the stairs, and she's like, "We just want to let you know that "gavin is not doing well." She's like, ". he's somewhat stable, but we had to switch him to..." They were [00:14:00] both intubated on ventilators. They had to put him on this higher-powered ventilator. Mm-hmm. Giving him some extra treatments, and he wasn't doing well. And I don't know if she just came down to keep me in the loop or what. But the nurse was- 

Rhandyl: Mentally prepare you. 

Heather: Yeah. And so my nurse was there, kind of in the doorway. And then so she's like, "Do you want to go see him?" And this is how- oh, gosh ... crazy our brains are. Like an hour ago it was so painful to sit up, and I literally just sit up and walk to the wheelchair, 'cause your brain just- yeah doesn't care about yourself anymore. 

Deonna: well you may have thought that was it. I mean- Yeah ... you just do what you gotta do. 

Heather: Yeah. And so she took me up there. And they both... I mean, they were very sick. They had one-on-one nursing. They were in the sickest baby rooms of the- Yeah ... NICU. They had put them right next to, the rooms next to each other, which was great. Good. But I just stayed up there for a while. And they were as stable as they could be. I mean, they weren't- Mm-hmm ... stable, but they weren't, you know- yeah ... quite dying in that [00:15:00] moment yet. And Yeah, from eventually I went back down, and from there that kind of just began our journey. Mm-hmm

to go back to your question about the breast pump, it's so unique because eventually your milk does start to come in a little bit. Mm-hmm. But when you first get milk, it's a tiny little vial. It's- Yeah ... half the size of a blood vial. Yeah. Mm-hmm. But it's okay because the babies aren't- right getting... they will... they're getting their nutrients through an IV, and they might give them a fourth of a milliliter of milk. Yeah. Oh my gosh. Colostrum. But the nurses were so great. They'd be like, "Oh, great job. Great job. You're doing so well," and there's just this tiny little bit.

Deonna: You're like, "Really?" They're like- It looks like I spit in there ... "

Heather: It's so important. It's so important." I'm like, "Okay." Mm-hmm. But, That's crazy. But yeah, so that kind of began our- Our whole journey, I went home after three or four days, and then they were in the NICU for four months. [00:16:00] Mm-hmm. And so just, back and forth every day, and , they had a lot of ups and downs while we were in there, my daughter more than my son.

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Deonna: So were you in the same town as them? I was- I mean, were they home at that point in your hometown? 

Heather: They were close. And I mean, they were a different city, but it was only about 25 minutes, so- 

Deonna: Oh, that's [00:17:00] not too- No so you weren't having to stay at some other place. No. And you were at least gonna get to be at home.

Heather: Yes. 

Deonna: That's, which, that probably helped a little bit. 

Heather: I'm very grateful for, 'cause our hospital- Yeah ... was kind of, they would take in babies from further distances away. Mm-hmm. And so- oh, yeah ... I met some moms who, yeah, they were either traveling, they were staying, they have, I think they have a Ronald McDonald House maybe now- Mm-hmm ... but I don't think they did then. And then also, if you had your baby and they whisked them away, I mean, you probably wouldn't see them for three days if you had to- Right ... stay in your hospital. Right. 

Yeah. So we were really lucky. One thing my hospital did do, which was also great, was we held them really soon, even though they were on ventilators. Mm-hmm. My daughter, I think we held her at two or three days old. Mm-hmm. It took a team., It took about three people, like- 

Rhandyl: Oh, yeah. I remember. Yeah. They tape the tubes to your shoulder. Yes, and you don't- 

Heather: And it's very serious. It's not like a baby that you rock them. Oh, yeah. They're like, "Don't move."

Rhandyl: No. Don't move. Yeah. Yeah. But they [00:18:00] called it kangaroo time or- Uh-huh ...... skin to skin. Yep. How important it is. 

Deonna: Yeah. Yep. I get that. But yeah. Well, you say you got to hold them really soon, and then you said three days, so for, you know- For the typical, yeah typical families, that'd be a really long time. Right. So I mean, yeah, your perspective is totally different. 

Heather: Well, I've just... Yeah. And then my son, he was on, the ventilator he was on was called an oscillator, which is just crazy. Oh, shoot. The shaking one- Yeah ... where they just shake the whole time. So you can't hold them on that. Yeah. But , I was able to hold him when he got down to the regular ventilator, which was about a week.

Deonna: That's crazy that he was on the oscillator. Yeah. I, we almost had to get put on that one time, and they had told us, "Hey, if she gets put on this, this is not good." 

Rhandyl: Yeah. I was, my daughter was on the oscillator shortly after she was born.

Yeah. She had a really bad event- ... and then they put her on the oscillator for, I remember I had got to hold her before that, just like you, probably two or three days after. Mm-hmm. Just a couple of times, and then she got put on that oscillator, and I remember it was 11 [00:19:00] days, and I remember when she finally got off of that- yeah I felt like getting to hold her after that- Mm-hmm ... was even more emotional than- Mm-hmm ... the first time. I mean, it was just another- 'Cause you just didn't know ... 'cause I really didn't think, after figuring out , everything, and that she may not make it, then after that long, and then holding them again, it just makes it that much more special.

Deonna: 'Cause the oscillator does everything for them, right? 

Yeah, and they're 

on a low s- it's a more intense vent ... 

Rhandyl: yeah, and I remember she had on these little goggles. They didn't want- Mm-hmm ... any sort of sensory input. Touch times were, like, not near as often as they were when 

Heather: they were- did she have the ear muff? 'Cause Gavin had little ear muffs- all the ear muffs ... 'cause it was so loud in there. 

Rhandyl: Ear muffs, glasses, ear muffs. 

Deonna: Why do they do that? It's just to focus on- 

Rhandyl: Yeah, What they explained to me, and Heather, they may have told you this Because the oscillator vent is already so over-stimulating.

Mm-hmm. They cover the isolette [00:20:00] so they're not getting any sort of- yeah ... white sound. As much- No disturbance ... minimal sensation- ... other than the oscillator vent. 

Deonna: That's crazy. 

Heather: And it's terrifying to watch because your whole life you've heard shaken baby syndrome, and don't- I know shake a baby, and they're in there shaking. 

Rhandyl: And they're just shaking. 

Heather: Yeah. 

Deonna: Yeah. That is crazy. And then it's also- I've never seen someone on an oscillator, and I probably don't want to. 

Heather: Yeah. No, It's scary too because, and again, that they may have new... I'm sure they, I'm sure they have new things now, but at the time it was kind of like this is the highest power thing we have. Mm-hmm. So this doesn't work, there weren't a lot of options. They still use it. Mm-hmm. 

So, and come to find out later, , for sure the hardest part was, I don't know if Remi had this, but they called it a honeymoon phase, where they did pretty okay. I mean, mind you, they were on ventilators, but they did pretty okay for a few days, and then they kinda got scarier. And, a- and it's just- Rollercoaster ... you just watch the alarms. Mm-hmm. 'Cause the, the alarms in [00:21:00] the NICU our kids were just alarming constantly. There's- Mm-hmm ... an alarm if your oxygen drops. There's an alarm if your heart rate drops. All the things. And we had two of them, so... And you could see the other screens on the monitors, and so we would essentially one of our kids was always having an issue.

But the hardest part was , they do brain ultrasounds. They do them- I think right after birth. I can't remember the number, but because they're checking for bleeding in the brain from the high-powered oxygen. And so I'm wanting to say it was , maybe around a week, maybe a little under, they had done the brain ultrasounds, and that's when we had not quite the full, 20 doctors in a meeting, but . You're sitting there and they're like, "The doctor wants to talk to you." Mm-hmm. And the nurse can't say why, and so you know that's something bad. And then the social worker comes in and- oh, gosh ... the chaplain comes by, and all the things.

And so, they grade the brain bleeds or the intraventricular hemor- hemorrhages from one to four. So one's the smallest, and four is the [00:22:00] worst. And so she had grade two which isn't great, but it's not the worst. I mean, your baby's brain is still bleeding, but it's not the worst. But then Gavin's he had a, a four, which was the worst on one side- and a two on the other. And so that's when- Good grief ... the social worker and everybody came in. , And- It's kind of a damage has been done situation. There's nothing they can do but monitor and make sure it's resolving. Because if not, then they have treatments. But, his - began to resolve fairly quickly, but then you just wait over the next two years because- Mm-hmm it's a brain injury. Mm-hmm. Yeah. And, like this could be something mild, this could be severe cerebral palsy. Yeah. You don't know, and they don't really have any way to say.

Rhandyl: Kind of A wait and see. And that's your big... That's the biggest concern with the micro preemies is- Mm-hmm ... the brain bleeds. Yeah. And they monitor those so closely. Yeah. 

Okay. So your daughter had a grade [00:23:00] two- Mm-hmm ... at that time, and then your son had a four on one side, a two on the other. Now how did those progress? Did they eventually resolve I know they continuously did multiple checks, but- yeah was there any more progression of the bleeds? 

Heather: We were extremely lucky because if it progresses from there, then they talk about putting in a shunt and things like that. Right. And they did not progress from there. So they just continually checked, and then they would also measure the circumference of the head because- Mm-hmm that can indicate bleeding, and I got really obsessed with bothering the nurses- ... about what that was every day. And I think they tried to- ... kind of like- measuring it yourself? ... tone me down a little bit with it, 'cause , I'm just such a numbers person, and they're- Yeah ... "you can't do that. You can't say, 'Well, it's this,' and that is gonna mean this for the rest of their life." It just doesn't- Yeah ... necessarily, in this case, coordinate like that. So , they did resolve. When we left at four months, they did an MRI, [00:24:00] and the MRIs looked good, but you can't necessarily rely on that. Gavin does have cerebral palsy. It's not severe, but his MRI was fine and he- 

Deonna: Your daughter does? My son does. Or your son? Oh, your son. 

Heather: Yeah. Okay. Okay. So, I mean, you can't really go by that 'cause the MRI was clear, but he does have- Yeah ... CP, so. 

Rhandyl: Yeah. It's kind of a wait and see , after they start developing a little bit more. Mm-hmm. Yeah. 

Okay. So you went home at four months, and then- How were things once you got home? I know for me, rely so much on the hospital staff, and then it's so scary. I mean, it's scary- Yes ... in general for people to just have a baby and take them home two - three days later. When everything's good. Uh, yeah, a, for a typical baby. But for you guys , how was that for you getting them home- Yeah ... after this long NICU stay? 

Heather: So they both went home on oxygen. Okay. And they had apnea monitors which hopefully those are better now. So, and they had both had feeding issues. [00:25:00] They were aspirating breast milk, formula, so they were on this thickened type formula. And so our first night was absolutely awful. We'd done everything we were supposed to do. Well, actually, we roomed in at the hospital. You have to room in a night before- Oh, yeah. You're approved- Mm-hmm ... to leave, and that was also awful. It was a mess. So we went home and we were using the formula like we were supposed to, but it wasn't the hospital formula, it was the formula that we'd had to buy at the grocery store. Mm-hmm. And we were using our little algorithm to thicken it, and come to find out it didn't work the same way and so the kids were choking. 

Rhandyl: You were bottle feeding. 

Heather: W- yes. Okay. Because they couldn't do breast milk. I had kept pumping to put it in storage, but they couldn't have it 'cause they were choking on it. Right. Or aspirating it into their lungs.

And so once we went home, everything was different. Again, this was many years ago, but the little stickers that our insurance gave us at home were terrible. They wouldn't stay on their face. The oxygen [00:26:00] came out. They were choking on their formula. No one slept. They were very unhappy babies. It was not good. And so we ended up frantically calling the speech therapist at the hospital who does the swallow stuff. Got it all figured out. Our cat was chewing on the vent tube. It was just like- Oh, no ... what else is gonna happen? And so- An excitement. Yeah. It was, It was a mess.

And so- We eventually got it figured out, but we quickly learned that we were gonna decide what was gonna work for our kids and what wasn't gonna work for our kids. Mm-hmm. So, their oxygen wouldn't stay in their noses, and so their numbers would fall, and our insurance was like, "No, use these stickers." And so I was like, "No," I went back to the hospital and they just gave me a bunch. And so- Mm-hmm ... you have to just realize if something's not working, you have to just ignore what people are saying and- 

Rhandyl: Yeah, the home equipment is- 

Deonna: It's always subpar

Rhandyl: not great compared to the hospital, 

Heather: unfortunately. Well, and the apnea monitors are great, but there are many false [00:27:00] positives. Yeah. Mm-hmm. 'Cause they would just slip and 

Rhandyl: so- So it sounds like you weren't getting much rest at all. 

Heather: No, we... And I- 

Deonna: Makes everything better. 

Heather: Yeah. My husband had a couple weeks off work, so we kind of worked through it together in the beginning, and you just kind of figure out a routine. The insurance was like, "We want you to use this home vent." And have these long tubes, and we're like, "We can't do that. Our cat is chewing it," and that seemed like a terrible introduction of bacteria. And so we basically carried around portable oxygen all the time, which insurance didn't like, and we were like, "We don't really care." And so you just sort of make it work.

And then , we had wonderful we had PT coming in, OT, speech- Mm-hmm ... and they were fantastic. We had a nurse, not a nurse to stay with us, but a nurse that would come check on them- yeah ... in the beginning. That's nice. And that was helpful, too. But yeah, it was a learning curve, for sure. I bet. It definitely, you're not just carrying your baby around. You're carrying around your baby, a oxygen tank, apnea monitor, like- All the things ... [00:28:00] it was a lot, yeah. 

Rhandyl: And were they able to continue to eat by mouth eventually? 

Heather: Yes. 

Rhandyl: Okay, good. 

Heather: They, they did. It was a struggle, but they did. 

Rhandyl: Awesome. 

Deonna: Yeah, I kinda wanna fast-forward to now. You know- Okay ... what is each of their disabilities look like?

Heather: Yeah. So Hannah, you would not know if you met her that she'd had this rough start at life. She had therapy in the beginning. She struggled with speech, but she's- Mm-hmm entirely caught up with that. She does have ADHD and dyslexia, which she very well might have had anyway. Mm-hmm. Yeah. She has a a heart condition that they just monitor. It doesn't affect her in any way. The ironic thing is- Mm-hmm ... it had nothing to do with her prematurity. They just caught it. Oh, I was gonna ask if it did. Yeah, they just caught it early- True ... because of that. Really her only struggles at this point are her ADHD and her dyslexia, but she's doing okay with it. I mean, she struggles- Yeah ... in math, but a lotta kids do. Mm-hmm. And so really she's had an amazing outcome. I mean, they both have- Mm-hmm [00:29:00] considering what they looked like on paper in the beginning. 

Rhandyl: Oh, yeah. 

Heather: So my son does have cerebral palsy. It's not severe, so I'm a physical therapist. I'm a pelvic floor physical therapist, but I'd had PT experience in the past. Mm-hmm. And so our hospital had given us stretches to do with the kids, and I had a peer, like I had Hannah right there next to him. And about six months, so about two months after they came home, I started noticing that his body was feeling different. His muscles were feeling very tight. And- mm-hmm ... they will not diagnose that young. The, the home PT can't diagnose, and I knew that, so we would kind 

Rhandyl: of- Especially back then they would- Right not diagnose very young. 

Heather: Huh. Yeah, and so-

Rhandyl: they're diagnosing a little earlier now, but yeah. 

Heather: Are they? Mm-hmm. Yeah, so she, I could tell she knew. I knew. Yeah. But we couldn't say it, so I would- Mm-hmm ... ask a question. She'd have to legally be like, "Well, kids with CP..." Mm-hmm. She couldn't really say, but- but yeah, he- Like I said earlier, there's really nothing you can [00:30:00] do except for watch and wait and get lots of therapy. Yeah. And so he did eventually hit his milestones. They were just delayed. So he did start walking around 22 months. As soon as he pulled up, he would pull up onto his tiptoes so far forward that he was actually on his toenails. And so we got him his first set of AFOs. Mm-hmm, mm-hmm. And he had those all the way, through until around kindergarten. Yeah ... he had a big neurosurgery in St. Louis when he was four. It was basically a surgery they do specifically for CP, where they go in and find the nerves that are causing the spasticity, and then they permanently burn them, basically. Mm, Okay. And so- 

Deonna: Wow, I didn't know that was a thing. 

Heather: It's not everywhere. It's called a selective dorsal rhizotomy. This guy in St. Louis is world renowned. People would come from other countries to see him. And so he was- Wow ... in the [00:31:00] hospital for a week with that, had to relearn how to walk. And then a few months later, he had an orthopedic surgery to have his gastroc muscle of your calves, have it lengthened. Mm-hmm. Mm-hmm. 

But then ever since then he's done well. He's had therapy the whole time, of course. Right. So today they are 11. He plays baseball. We go to a different town where it's less competitive, and they've let him play down a couple years because- 

Rhandyl: Oh, that's great. 

Heather: Yeah, 'cause it's crazy anymore. Fifth grade baseball- Oh, yeah ... is super competitive and- It's crazy. 

Deonna: It's like the major leaguers here. It is. So wild. You can't just join a baseball team- No ... in this town. 

Heather: No, and we- Mm-hmm ... just want him to have fun and make friends. 

Rhandyl: Yeah, that's what matters. Yeah. Yeah. 

Heather: Yeah. And so- 

Deonna: So are they cognitively the same as their peers and everything? In terms- Or is there developmental delays as well? 

Heather: Yeah. There, there was, but in terms of just cognition, they are caught up. He has more significant ADHD, and he has very, pretty profound dyslexia, [00:32:00] dysgraphia. Mm-hmm. He has some private tutors. They're both on IEPs, but he's on a more extensive IEP. Yeah. Yeah. We're going to middle school next year, so I'm not yet sure how that's gonna go. The school seems like they have a great plan. I always- Mm-hmm ... worry about other kids not always being nice. That's my biggest- Right ... fear. Mm-hmm. Oh, yeah. 

Rhandyl: Is it just his lower extremities that are affected from his CP? 

Heather: They're affected the most. Okay. He does have a weaker c- weaker trunk strength, uh- Okay ... weaker core. And his arms are... Like, if you were to just see him, you wouldn't notice his arms. But, . my kids love to swim, and he he can't do freestyle because he can't get his right arm, his left side of his brain was where the worst bleed was. Mm-hmm. Oh. He can't get that full motion of his right arm. Ah, yeah. Gotcha. But he can breaststroke, and day to day, you wouldn't notice it in his arms. You notice it a bit more in his legs. 

Rhandyl: Okay. [00:33:00] So kind of going back and then also even today, how would you say that you handle the stress of their diagnosis? How did you handle the stress even in the early days? And then how about your family members? Do you have a lot of support? How did they handle- mm-hmm ... everything from start to now, 11 years later?

Heather: In the beginning, I would say I honestly handled it by taking it minute by minute and not totally processing everything, honestly. Like- mm-hmm. It's probably the best way. I think it 

Deonna: was- Disassociation works really well. 

Heather: Yeah. I think it was survival mode for the- Yeah ... first two years. Yeah. 

Rhandyl: Totally understand that. Mm-hmm. 

Heather: And 'cause around two years, I started developing a lot more anxiety. I was very afraid to take them in a car with me. Mm-hmm. Y- your brain starts getting those intrusive thoughts. It wasn't as bad if we were going to a doctor's appointment, but if we were going say, [00:34:00] to- I don't know. I'm just gonna say- Some are fun ... some are, yeah Some worst-case scenarios I'd be like, "Well, if something happened, this was my fault." Mm-hmm. They didn't have- Mm-hmm ... to be in the car. And so I really feel like a lot of that was kind of the PTSD, that I just didn't process anything until they were safer. And so- 

Deonna: Me neither ... 

Heather: I had to talk to my doctor. I did get on medication, which helped tremendously. Mm-hmm. So in the beginning I think I just wasn't processing, and I will say- ... the, therapists that came into our house were very helpful. My parents were very helpful. We had great friends. Our original plan had been daycare, and that was not gonna happen- because they were basically- 

Rhandyl: Funny how those original plans- 

Heather: Yeah. They're like, "If they get a cold, they're going to die. If they get RSV, they're going to die." Sure. And so my mom... I dropped down to part-time, which was not my original plan, and then my mom came two days a week and watched them in the house, because that was the only- Oh, that's great yeah. So I was very lucky to have her [00:35:00] nearby, and we, trained her on all the oxygen and the feeding and things like that.

My husband, I feel like I haven't talked about him, he was super supportive. Great. He just, of course, had to go back to work. He holds the insurance, all of that. So- Mm-hmm ... so yeah. And I feel like now I'm so many years out now. Mm-hmm. I feel like I've processed a lot of it, but now, of that initial trauma- Sure ... now it's just trying not to get stuck in the process of worrying about, like I mentioned earlier they're tweens now. So now- Mm-hmm. Yeah ... it's gonna start to worry about bullying, and- Yep can we handle the intensity of middle school, and how are the other kids gonna be, and things like that. So it's just different as they get older. Yeah. 

Deonna: I get worried about that. I, we actually switched my daughter to a different elementary so that she would know more kids in middle school. Oh, that's smart. It's kind of a weird districting thing in our town, but I was really worried about that, and I just thought, "Are kids gonna be [00:36:00] weird?" But I do think their generation is actually a lot better than our generation was- ... growing up as far as acceptance- Yeah ... and love of disabled kids or kids who are different or whatever.

Because my son will tell me these stories. He's in middle school, and he'll tell me these stories, and they're just so different than what we grew up with. Mm-hmm. There's just... It's not as bad, I feel like, as it used to be. Maybe the social media and the anxiety bullying kind of is bad, 

Rhandyl: but- Well, and I think that the inclusion that they- yeah really push for now helps a lot. Mm-hmm. So that it's not just, "Oh, you're gonna see these kids in the lunchroom here and there." You know- You can know them ... they're really... Yeah. Yeah. They are your peers, and they may not be- You know, like your other classmates, but they are people. They can communicate in their own way. They may be just a little different. But yeah, I think that there's a lot more that needs to happen in the school system- For sure ... but I think that [00:37:00] they're trying and- Mm-hmm ... that it's definitely, hopefully, I think, better for sure, like Deonna said. Yeah. 

Deonna: I hope. Yes. 

Heather: I hope too. Yeah. Me too.

Deonna: So what would you say is the hardest part of maybe going through the NICU experience, and then what's the hardest part of having a kid that is just a little different than everybody else? 

Heather: I think the hardest part of the NICU was just the not knowing. Mm-hmm. I feel like I was saying earlier, they can't say, "Oh, this number is going to mean this later in life." Mm-hmm. So... And I was such a planner. I mean, this has very much changed since my experience. But prior to that, I was such a planner and such a- mm-hmm ... this is gonna happen and this is gonna lead to this, and that just does not work in the NICU. No. You have to just- 

Deonna: Are you an oldest child? I'm oldest.

Heather: I was like the only child. 

Deonna: Oh, yeah. Ah. So, yeah, you... yeah. Oldest child, so you know. 

Heather: Yeah. We're all like that. And so- mm-hmm ... I definitely had to readjust my [00:38:00] whole brain to be like, "You have to just take this minute by minute." I had to learn to be much more flexible and, much more go with the flow. That is not- Mm-hmm ... my natural tendency. Mm-hmm. Nope. But I think just the not knowing and the having, just the wait and see, because it's not wait and see for a few weeks. It's wait and see for two years and- 

Deonna: Yeah. Yeah. So I think- Or a lifetime in some situations. 

Heather: Yeah, exactly. And I think the hardest part now so especially with my son, it's he has CP, but he's not to the point where he... he doesn't use a device. He's not in a wheelchair. Mm-hmm. So the hardest part with other kids that I found is that, sometimes they're almost kinder to kids who... And obviously, this depends on the situation. He has a disability that is visible, but it's not as visible as some.

Deonna: Yeah. Mm-hmm. I know what you're saying. 

Heather: And so, sometimes they're kinder to kids who might have, say, Down syndrome or something of that- Mm-hmm ... but , their expectations for him are different. And so- Yeah ... when he's playing- Mm-hmm ... at recess and he can't catch the [00:39:00] football, they're not always... I don't know. Understand. And to be fair, some of the kids have been so nice, and they have stood- Yeah ... up for him and things like that. But now that they're going into middle school, I think the hardest part is just worrying, too, about the future. Like- mm-hmm ... now we're getting into really hard school. Now we're trying to decide, what's the rest of life going to look like because- Mm-hmm school is very hard. And I was always a, I was for sure going to college. I got my doctorate. I was, had to get As, like all those things, and- mm-hmm ... that college may not be in the cards. Maybe it will be. Yeah. Maybe it won't be. And so- just having to, take it day by day. Mm-hmm. I don't think that ever changes. No, yeah. I think you just keep it day by day always. 

Deonna: It is hard when you have to readjust your entire view of what you thought your kid's life would be like, because, we all had... Like, when me and Rhandyl find out you're having a daughter, you have this vision of her walking down the aisle and doing all these things. Mm-hmm. And then all of a sudden you're like, "Wait, I don't [00:40:00] know if that's gonna happen." Mm-hmm. I mean, I'm not saying it can't, but it's just, it gets more unlikely. But I do think it's hard sometimes, 'cause you're kind of in that in between. It's like you have a disabled kid, but they're not this extreme disabled kid like we have, where we get all these resources and, like, all these things. We have lots of friends whose kids are kind of similar to yours. They have disabilities and they need resources, but we get all these things sent to our doorstep. Yeah. Thousands and thousands of dollars worth of products every month. And then we have friends at church who would kill to just get a shipment of diapers for free or something. Yeah. I mean, so that in between is kind of tough, you know- yeah ... for a lot of reasons. 

Heather: I think the sibling dyna- dynamic can be hard, too. Our kids, I feel like they're very similar to many siblings, where they're like best friends in one moment and mortal enemies in the next moment. But it is hard for Hannah because Gavin does get more, quote unquote, [00:41:00] "special treatment" with certain things. Mm-hmm. Yeah. And they're entering the age where she's realizing technically, yeah, this is kind of unfair. And so- mm-hmm ... having to balance that is tricky too, and that's definitely just a work in progress. 

Deonna: Oh, yeah. I'm always like, "Life's not fair. ... We were never promised that life was going to be fair." Yeah. And that's really hard, 'cause you think as a kid, all kids think everything should be fair, and that's just not how it works. Yeah. 

So what were some, if any, positive or unexpected surprising moments that you've had through your journey of motherhood? 

Heather: I think the biggest thing is that you really have to slow down, first of all. Mm-hmm. And you really notice the small wins, which I'm not sure I would've noticed all those wins before. 

Deonna: Yeah, for sure. 

Heather: Because I don't know what type of mom I would've been, but I [00:42:00] know, we had so many struggles in the beginning with... I mean, my kids didn't drink from a straw. I don't know how old they were. Many years old. I mean, I would've never been like, "Oh, wow, look, my kid can drink out of a straw." That would've not even crossed my mind. Yeah. And that was such a huge win. Or, walking, of course, was a big one, but, I distinctly remember the moment Gavin learned to get up off the floor. Mm-hmm. And it was not the way the PT was trying to teach him. He just did it on his own, and we... I mean, that was such a celebration.

And now that they're in school, again, when I was in school, I was type A. I wanted As on every single thing, and I don't look at life that way at all anymore. Yeah. I look at it like I don't care, they have all the standardized testing. I couldn't care less where they fall on that scale- Yeah. ... on that scale. Yeah. It's like- All those things ... did you try? Yes. Great. Do you feel confident about yourself? [00:43:00] Great. Did you- Mm-hmm ... make a little bit of progress? Awesome. I don't care about anything else, and- 

Deonna: Yeah. So- Expectations get lowered.

Yeah. 

Rhandyl: Oh, yeah. And your perspective- Big time ... I mean, it's just, it's a whole switch in perspective- Mm-hmm ... once you go through these traumatic experiences. 

Deonna: You don't sweat the small stuff anymore. No. 

Rhandyl: Don't take anything for granted. ...

okay, so what or who has helped you the most, and then also what do you think has helped your children the most throughout their journey over the last 11 years? 

Heather: Family for sure. So my husband, parents, good friends. When we had them, we had a couple people step up that were friends, but not necessarily best friends. Mm-hmm. But they had been through a similar experience. Yeah. And they just jumped in like they were someone that we had spent every day with, because- ... they'd been there, and so that was really helpful. [00:44:00] And what was interesting about that was there was two of them, and their outcomes health-wise were entirely different. Yeah. Yeah. And they were both really positive, and that was really helpful because then we could say, "Okay, whatever happens, we have great examples all across the board."

The therapists coming into our house were wonderful. We live in a good neighborhood with lots of other kids, and so the older kids kind of just welcome them in, and so they've kind of just grown up as a little neighborhood herd of children, which I think- Aw has been good. Mm-hmm. Mm-hmm. 

One thing I've noticed with Gavin is that a lot of Hannah's little girlfriends are kind of extra sweet and protective of him, which- 

Deonna: Yeah, I believe that ... 

Heather: wasn't something I expected, but that's been something really positive, too. We've had really great- That's cool ... teachers for the most part, and that's helped a lot also.

Deonna: Yeah, I feel like NICU moms really stick together. I'm not a NICU mom, and I feel like that's a subcategory- Mm-hmm ... of the disability world, and you [00:45:00] guys just know... It's just different. It's a different experience than the PICU or whatever. But yeah, it's nice when people show up for you that you weren't necessarily even realizing they were gonna show up for you, so that's cool. Yeah. Yeah. We've had that happen, too. Mm-hmm.

We wanna know kind of just what some of your kids' interests are or f- what their favorite things are. 

Heather: So Hannah loves animals. Mm-hmm. All pets. We have a dog and two cats, but she loves any animal anywhere. Mm-hmm. She loves swimming. We have been on the swim team for a few years. That's cool. And that's been a really positive experience for her. She is currently, now that we're entering this world of being a tween, she's really lately gotten into music and dan- like, creating little dances to music. Fun. So that's her current favorite thing. That's fun. 

Gavin, he also loves being outside. Again, we have wonderful neighbors, so both [00:46:00] of them love to play with the neighbors outside. He does play baseball. It... That's hard for him, so it's a challenge sometimes, but I do think he likes it. Yeah. He loves Roblox. They both love Roblox. They love their iPads. Oh, yeah. I try to keep them off their iPads, but they do just love their iPads. He loves watching sports. He's a huge Chiefs fan, he's a Royals fan. Oh, yeah. He's a KU fan. He can tell you every NFL statistic. It's crazy. He likes cars working with his dad on that. So I mean, I'm very blessed. They're very happy, healthy kids from a very scary beginning. Yeah. And so- 

Deonna: Have y'all ever been to a Chiefs game before? 

Heather: We have gotten to go to two, and he- 

Deonna: I bet that's fun ... 

Heather: it was, like, the time of his life. Yeah. 

Rhandyl: Oh, I bet. 

Deonna: So Mahomes used to be the quarterback at Tech, which is our town. Yeah. Yeah. So everybody, everywhere you go in Lubbock, people wear the Kansas City Chiefs stuff- Oh, that's cool which is [00:47:00] so random and funny, but- Yeah. 

Rhandyl: And he comes here all the time- yeah ... and be at our sporting events, 'cause he's, a really big, uh, supporter, alumni for Texas Tech, 

Deonna: so. He was at the basketball game we were at, like- Oh, yeah? ... a few months ago, and I mean, when he walked in, people just went crazy. Mm-hmm. Lubbock people are the biggest Mahomes fans of anybody, but- ... it cracks me up. 

Rhandyl: So Heather, you had the support of the, your friends that had, say, NICU experiences or similar experiences. What would you tell a parent that might be having a micro-preemie or just a child with CP in general?

Heather: I think the biggest thing is, and it sounds so cliche, right? It sounds super cliche, is that it will be okay. Yeah. You are not alone in this. Mm-hmm. Take this a little bit at a time. Give yourself plenty of grace. I still struggle with this. Like I said earlier with the iPads, like I, I'll stress out that [00:48:00] "Ugh, they're on their screens too much," and things like that, and then sometimes I'll step back and be like, "That's okay. His legs are tired." Like- Yeah ... he's been at school all day. It is okay if he's on his iPad. So cut yourself some slack. Mm-hmm. You're doing a great job. Hang in there. Reach out to your community. Let people help you, and it'll be okay. 

Deonna: Yeah. That's great. You're right about that. I feel like screen time judgment does not apply to kids who have any sort of disability. Yeah. Because Allie is on her screen way too much, but what else is she gonna do? I mean, you know- Yeah ... it's okay. 

Heather: That makes me feel better. 

Deonna: And she loves Roblox, too. I'm like, she's kinda young, so I have to watch it a little bit, but- Yeah ... she loves that. Yeah. 

If you could describe what your kids have taught you about yourself, like what's something you've discovered about yourself through this process?

Heather: I think the biggest thing is to slow down and just really take in the moment that you're in, and not necessarily spend all of my time thinking about the [00:49:00] future, worrying about the future- Mm-hmm ... projecting into the future, and then you miss out on the moment that you're in. Yes. Yeah, for sure. Um,

One thing that has really helped me, and I'm gonna give this credit to, her name is Rachel Nielsen, she actually has a podcast called 3 In 30 pod- a podcast for moms.... so this is her nugget. She, and she has a journal you can buy with it, and it's called Flecks of Gold. And so the idea behind it is we're always looking for this like big, wonderful, great thing about the day, and sometimes that's not the way it is. Sometimes- Right ... it's more little flecks of gold throughout the day.

Mm-hmm. And so her journal, and I try to do this, I can't say I do it every day, but it would be great if I did, is every day, write down those little flecks of gold with parenting. Mm-hmm. And because then not only are you writing it down and thinking about it, then your brain kinda starts to look for those things, too. So I found that really helps because it can be... They always are something so tiny, like it's something your kid says, or- Mm-hmm ... [00:50:00] they smile at a certain thing, and I think without our experience, I would likely not be paying attention- Sure ... nearly as much to those things. Mm-hmm. 

Rhandyl: I love that. 

Deonna: That is really cool.

I do think, I saw this quote the other day that's kinda like that. It was basically saying "Happiness is noticing how the sun feels on your face." And these little things that I... And I was a mom with typical kids before, so I know both sides of this, and I wouldn't notice any of these things. It was just like I was so busy hustling and trying to keep up with the Joneses, and now I'm like settling into it, and yeah, there's- a thousand things a day that can be great even though we have really stressful lives sometimes. Like- yeah ... there's a lot of flecks of gold for sure. Mm-hmm. Mm-hmm.

. So you also have a podcast, which we recorded an episode with you, so you can go listen to that as well. But just tell us a little bit about your podcast and why you started it and what you're trying to accomplish with your podcast. 

Heather: Yeah. [00:51:00] So mine podcast is called The Mama Sisterhood, and the idea came to me when we were going through our NICU experience- Mm-hmm ... but then also throughout the years, at physical therapy, different things like that, meeting a lot of these different moms. I realized that there are so many moms out there, you two included, who have such amazing stories, and I just wanted to get those stories out there. So it is a lot of medical moms. It's not all medical moms.

But each episode is an interview with a different mom who basically has a unique journey. So, sometimes it is perhaps a special needs journey, but the last episode I had was actually a mom who is a firefighter. I've had- ... moms in military families. So there's all different- Yeah ... experiences. And so each episode I get to kind of learn about that mom and what her life is like, and then I feel like we can take lessons from that. Even if we're not in the same situation, there's always something- Yeah ... that's [00:52:00] interesting that you can learn, and then I just really feel like it helps moms support other moms.

I think, being a mom is hard, and so- Mm-hmm. Yeah ... if we can, anything we can do to create community and inspire moms and teach them about each other's lives, I think is helpful. So- It's called The Mama Sisterhood and it's on most of the, Apple and Spotify- Mm-hmm ... and all of those, those regular platforms. 

Deonna: Well, thank you so much for coming and talking to us today, and for letting us talk to you on your podcast. So that was fun. Yeah, it was. Me and Rhandyl both got to share our stories, and sometimes I... i've heard Rhandyl's story a lot of times in different ways, and every time I learn something new and I'm like, "I didn't know that happened," or- Yeah ... "I didn't know she..." Whatever. So it's funny hearing her story again, like, all the different things. But we're so thankful that we got to talk to you today, and we had a lot of fun.

Heather: Well, thank you so much- Yes ... for having me, and thank you for sharing your stories on my podcast too. It was all a really good time. I really appreciate it. 

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.