Hello Friends 👋
Welcome to the first episode of Beyond the Beeps!
In this conversation, Leah interviews Katia Herminio, a mother of a former 24-week preemie who spent almost four months in the NICU. They discuss Katia's unexpected preterm birth experience, the procedures and surgeries her son underwent, the challenges of breastfeeding, and the setbacks they faced. Katia shares her first time holding her baby, the power of hope, and the strength and resilience she found during their NICU journey. She emphasizes the importance of relying on nurses and doctors to help understand the NICU and having faith in the process.
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Takeaways
Procedures and surgeries, such as PDA ligation, central lines and eye procedures, are common in the NICU.
Breastfeeding can be challenging for preterm babies, and formula may be necessary.
Having hope and relying on healthcare professionals can provide support during the NICU journey.
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The transcript of today's episode can be found below 👇
Leah (00:01.878)
********Welcome Katia.
I'm so, so glad to have you here. Katia is also one of our NICU mentors with ICU Baby, and she's the leader of one of our hospitals, and leads a team of about six or seven mentors now, and has been supporting families in the NICU for seven years now, Katia, is it?
Katia (00:36.01)
Thank you. Hi.
Katia (01:00.19)
I think so. I think that sounds about right. Six. Yes.
Leah (01:00.496)
Six, yeah? Amazing. Well, we're so glad to have you here. Tell me a little bit about what brought you to the NICU.
Katia (01:15.126)
Thank you for having me. Our journey in the NICU was unexpected, like many of the families that we help. I think it was 23 weeks. I had some minor cramps, which I thought was not a big deal at all. And I called my doctor just to see what she thought. And she said, well, just go to the hospital and you know, check in and make sure that everything's okay. And I did, and when I got there, they asked me how long I'd been in labor. And I was, what do you mean labor? Because I didn't know I was in labor. So they, you know, we ended up staying in the hospital for two days, I believe. And it seemed like they gave me all the medications and everything I needed, and it seemed like everything was under control, and the plan was that I was gonna go home.
and being bed rest, you know, for the rest of the pregnancy. And as I'm preparing to leave and get ready to go home, my water broke. And so it was like, you know, within minutes the baby was out and he was, yeah, that was at 24 weeks, exactly 24 weeks. So, yeah, very unexpected. Yeah.
Leah (02:33.258)
Yeah, and if I recall, you weren't even in your home country, never mind home state when this happened, right?
Katia (02:42.738)
No. I'd come for my sister's wedding, so I was here temporarily. I thought I was gonna be here for a couple weeks before to spend with my family, and I was gonna stay a couple more weeks and then go home. And yeah, that ended. I missed the wedding. It just all happened the day before the wedding. So, yeah.
Leah (03:02.968)
Oh my goodness. Do you remember the first time that you saw Kyrie in the NICU?
Katia (03:10.234)
I do, I do. It was, yeah, it was a shock. My dad, because my whole family was here at the time for the wedding, so my dad was here and he was there in the labor and everything. And so he was, I think because he was so shocked, he was trying to avoid, you know, as much as he could, me going to see the baby. But finally when I went, I was shocked because he was so, so tiny and...
His skin was translucent and it was just so, I wanted to touch him but I was scared. I didn't wanna touch him and yeah, it was a big shock. I'd never seen a baby that small, ever. So it was really shocking. And even at the hospital at the time, I...
Leah (03:56.956)
Yeah. Wow.
Katia (04:05.458)
I don't remember even walking down the hall I don't remember seeing babies as small as him at the time so Yeah, it was quite shocking
Leah (04:14.708)
Yeah, I imagine those moments are hard to remember. So the fact that you can recall that is pretty powerful. Tell me a little bit about the time that he spent there. What was his course like? We know there's ups and downs, but what was sort of the daily life for you all?
Katia (04:21.505)
Yeah.
Katia (04:37.882)
Yeah, he had the typical, what the doctors told us, we had those first few days with the honeymoon phase where we were like, this is scary, but it looks like everything's gonna be okay. He was doing great. All the vitals were great. Everything was wonderful. And then I think it was like on day two was when we had our first setback. He had a brain bleed and we didn't know how bad it was and all that stuff. And then...
From then onwards, it was like the roller coaster was like, you know, one day was good, then we had to set back, one day was good, you know, on and off. We eventually, we were trying to get to the point where he was big enough that he could have a PDA ligation because the doctors thought that was something that would help them. They had tried the medication, it hadn't worked, but he was so tiny that they were just, you know.
Katia (05:34.502)
waiting. But after that, then we saw him get better. And then we're like, okay, finally, we're in a better phase, things are looking up. Then he started having issues with his gut. And then that was another up and down. And it was basically like that until like right before we left. That's when he started getting better. And then it was just a matter of like gaining weight and gaining weight and gaining weight. But it was, yeah, we had those ups and downs and ups and downs for a while.
Leah (06:05.224)
Wow. So I hear there's like times for you that were marked by procedures or surgeries and interventions that they had to do with him. The first one you talked about was the PDA ligation. What were you told about what these three letters and this other Latin word means when you when you were presented with it? What were you told about it?
Katia (06:10.719)
Yes.
Katia (06:26.062)
I'm going to go ahead and close the video.
Katia (06:30.446)
Yeah, I think the doctor explained it well. I had a background in biology and in pre-med, so I knew the physiology and what was going to happen and all of that, but the first thing I heard was like surgery, you know, the heart. That's what I was thinking, heart surgery.
this little here and then they're like, we're gonna do it in the room. And I was like, this is, you know, this is the worst case scenario. And especially because it was like, we had been trying with the medication and it's like, it's not working, it's not working. So that I think of all the procedures, that was the one that I was most scared for. But really it was, they did it in the room. It wasn't like a special thing. It was quick in and out. He recovered really, really well and he got a lot better after the procedures. So I remember being very, very scared for that one, but it ended up being, I think, one of the ones that was best for him. I wish we had have been able to have done it earlier, actually. But that one's very scary, and I see a lot of families in the NICU having that same response, of like, no, we don't want to do it, and being scared. Yeah.
Leah (07:48.232)
Yeah, like you said, it's heart surgery. And as adults, we think about, we're going to crack open your chest. And now we're going to go in, and you're on monitors. And so knowing for you, it sounds like what was really helpful was knowing what was going to go into it, like more explanation, saying this is what we're going to do and how we're going to do it. And of course, knowing the benefits, right? It helped Kyrie turn around and be able to oxygenate better, right? Get more oxygen to his whole body.
Katia (07:54.078)
Yeah.
Katia (08:13.39)
To his lungs, to his body, yeah, that made a difference. Yeah.
Leah (08:20.352)
Wow, yeah. And did he have any other, I know I think that was the first one you said, but are there any other procedures or surgeries that he went through?
Katia (08:31.058)
Then he had procedures to his eyes. So first he had the injections for ROP, sorry. And he had, pretty sure I did it right. So he started off, we had the injections and.
Leah (08:41.012)
And that's retinopathy of prematurity. Okay.
Katia (08:49.722)
because he had a stage, I can't remember what stage it was in, I think he was stage three. And so he started with the injections and the procedure went well, everything was fine, but it really didn't help. So then he had to do the laser surgery after that. And again, that was, you know, tough to hear like surgery, the eyes and but again, he recovered really well from both those surgeries. And luckily, till today, he hasn't had any issues from that. But that's another procedure that is scary.
Leah (09:26.612)
A lot of parents we see, there's a discussion about whether you stick around for the retinopathy of prematurity or the ROP exam, right? Like should you stay and watch that? Parents who like to support their baby, how did you handle that, making that decision?
Katia (09:43.31)
Um, I just, you know, from the beginning, I decided to be there. That's definitely a tough one to go through. And I remember after leaving the NICU and I took one of my parents and, my mom just left, she's like, I can't, I can't be here for this. She couldn't do that. So it's, it's hard. It's tough to see. Um, but again, it's like after so much that he's gone through, you know, this was just part of his journey.
And again, the doctors and nurses, everybody explains everything before, after, and then it just kind of becomes part of the routine.
Leah (10:24.016)
Yeah. Was there something that was said to you that was more beneficial? Like if you were to say, you know, to a neonatologist or a bedside nurse, something that was helpful for you to have heard about that procedure particularly?
Katia (10:41.23)
That procedure, no, not necessarily. I think speaking to other parents was definitely something more comforting. I remember, especially after we left the NICU, speaking to other parents in the waiting room that were having the same procedures and talking about what we went through, that was always comforting. Yes.
Leah (11:06.044)
Yeah, helps normalize it. It feels very, very extreme until you realize it's something that happens all the time. And I imagine having it being 24 weeks, very frequently babies have lots and lots of lines, right? Lots of tubes and lines and monitors and they're tiny and their veins and arteries are tiny. Did Kyrie ever require like a central line besides the one that is in his belly button?
Katia (11:30.946)
He, yes, he did, he did. So he had the one in the belly button until it eventually fell off, and then he needed a PICC line. So he had that procedure, and again, the nurses and the doctors explained everything and all the risks involved. And you know, I think at that point when you're already gone through so many different things, it becomes...
But it's always more comforting to have doctors and nurses explain exactly what's gonna happen, explain the risks and all that stuff. And he again, didn't have any complications. It was an easy procedure.
Leah (12:16.473)
Yeah. I know from, and you and I have talked about this at times too, is having this central line, it feels very scary because it's going right into, helping to go bypass all of the arteries and vessels that are outside of the baby directly into their internal system, right? And would they ever share with you the benefits of that? Why would this be a good idea to do? That's something that I think is really challenging for families to understand is you think, oh, just put it in their fingers, put it in their arm. What was told to you that would help you to feel more confident with that decision?
Katia (12:56.618)
Um, I can't remember, but I remember one of the things they had said was that at the time they kept testing his blood every so often. I don't know how many times, so they had to, you know.
prick his feet and his fingers and everything else. And they're like, you know, this, we're gonna lose use, everything's gonna be this one line. We're not gonna have to do this thing for him constantly all the time. And so I was like, yeah, I think that's that. That's the way to go. It's gonna be less bothersome for him. And yeah, I think that's all I can remember now.
Leah (13:32.968)
Yeah, I think that makes sense, right? You know, he's instead of having to poke him and prod him every day. I mean, even heel sticks are a lot. Yeah, right. I mean, at baby and he's there for it was four months, which is actually quite quick for a 24 week or sometimes they're there even longer, often too. So getting stuck every day sounds really rough.
So that makes sense to me too, right? To hear that would help reduce the amount of times you have to bother him and irritate him. Wow. And do you remember the first time you got to hold him?
Katia (14:04.855)
Yeah.
Katia (14:10.17)
I do. It was actually, it was close to Mother's Day. I think it was like some big event. And so I was waiting and waiting and waiting. And then the nurses finally said, okay, no, we spoke to the doctors. He still had all the cables and all the, he was connected to everything. And they were like, no, we're going to make it work. Don't worry. So I think it took like three nurses to help, you know, to adjust him and be able to put him on me because they had to put the cables around and this and that, but they were so sweet. They managed and we, I think I held him for like hours for the first time he tolerated. He was calm the whole time. So it was wonderful. Yeah.
Leah (14:48.66)
Oh my goodness. And at that point, right, so babies who are in the NICU, they have to breathe in lots of different ways. What was he using to help him breathe? And then, do you remember?
Katia (14:58.298)
I think he was still on the ventilator because I see the picture, you know, he still had. And that was one of the things. So then they had to like tape him onto me. So we wouldn't move. Yeah, so they were very, very sweet to do that. I know it was, you know, it was risky considering he was still on all the monitors and everything, but it was wonderful. Yeah.
Leah (15:20.272)
Yeah, the people who were there helping you said it was like a bedside nurse, maybe a respiratory therapist, maybe? Wow. Moving all of his tiny little body, plus the extra everything over to you.
Katia (15:26.33)
Yes, yes, I think so, yes, yeah, yeah. Yeah. The actual, yeah, yeah. And they taped him on me and I was like, okay, don't move.
Leah (15:42.58)
Wow, do you remember how you felt?
Katia (15:46.986)
Um, I don't know, I felt it was very emotional because, you know, that's what you dream of, of being able to pick up your baby for the first time. And it had been, I think it had been weeks since, you know, since I was able to tell, I would put my finger in the isolette and help change diapers and things like that, but it hadn't never really touched him. So that was really, yeah, it's like, you know, the first, at least in your mind, the first thing of being a mom, like being able to hold your baby.
Leah (16:16.84)
Yeah, that's exactly what I was gonna ask you is when becoming a parent is such a wild experience, period. But now adding the sudden unexpected premature birth, you have a little guy working real hard, so tiny.
Katia (16:28.021)
Yeah.
Katia (16:33.311)
Yeah.
Katia (16:36.6)
near.
Leah (16:38.112)
where was there a moment you said maybe this was the moment where you felt like this is it, this I'm his mama and this is my baby.
Katia (16:43.922)
Yeah.
Katia (16:48.198)
Yeah, yeah, I think so. I think, I mean, I think in the back of my mind until then, it was like, you know, we didn't know if he was gonna make it or not, but it was like, after that moment, it's like, no, you know, he's made it this far. I actually got to hold him and it felt like real, you know? Before it was like, you know, we were still in that phase where it was like, you know, anything could happen.
And I think from then onwards, it was like, I think he's gonna make it. At least that was what I was hoping, you know?
Leah (17:22.641)
Yeah.
Leah (17:26.144)
Wow, and that hope is something that I know for us with ICUbaby, you and I do all the time, is we wanna uphold hope. How do you describe hope when you're in the NICU? How would you describe it?
Katia (17:45.166)
It's hard to answer, but it's... I'm not a particularly religious person, but I think this experience definitely made me believe that there's something definitely, you know, beyond like a higher power, because it felt like from the beginning that the odds were against us. First it was like...
is he going to make it? And then he did. And then it's like, okay, is he going to survive this and this and that? And it's like the whole time was like testing, testing. And I remember one time one of the doctors said, you know, we've done everything now it's, it's up to God. I was like, you know, if you hear doctors saying that then you know, all you can do is hope. And so that's what we did every day. You know, first it was like, hope that he survives and it's like, hope that he gets better, hope that he starts eating. And that's all that, held us, you know, together the whole time. But it was like little things every day. And yeah.
Leah (18:58.836)
Wow, it's such powerful times. I'm so grateful that you're sharing all these experiences. Though you said there were some things that you would do to help you when you were faced with these, just unparalleled odds, right? Like this is not something we expect to face as parents or humans. Was there anything that made a difference for you or helped you like, get up the next day, go in the next day, even though they said, I don't know, we don't know.
Katia (19:34.522)
Yeah, I think it was him. It was him just wanting to be there for him, to know that he was loved, to know that we were there for him. So yeah, that's what kept me going was him.
Leah (19:47.856)
Yeah. Wow, it's incredible love. You talked a bit about his, some setbacks. And we know setbacks happen in the NICU, right? We always say, they take baby steps forward and they take baby steps backward and that's just their pace, you know? I always like to introduce it to families as, you know babies don't wear watches, they don't have date books, they're gonna follow their schedule and when they need more help, they need more help, when they need less, they need less. Can you share maybe a setback you might've had with Kyrie and how you sort of rally yourself around?
Katia (20:37.67)
Um, I think the biggest setback was, was the brain bleed. He had a significant brain bleed. I think it was right in the beginning day two or so. Um, but you know, in terms of how he was doing in the NICU, we couldn't really tell how that had affected him then. Um, then the biggest other setback we had was with, um, uh, just his gut.
Anytime he'd start eating, he couldn't tolerate it. And he would, it looked like he was having an infection. He would have swelling and all these kinds of things. And they would do all the protocol and put him on antibiotic and things like that, and wait a couple of days until he got better and try it again. And he would maybe be okay for one or two days. And then that would happen again. And this kept going, kept happening to the point that we...
the doctors started considering transferring him to Nicholas because they're like, you know, we've tried everything, nothing's working. And then it was just one day he started tolerating and he started feeding and he started eating and just like that. But that phase was difficult because you would see that he...
when he started eating he was doing you know he was looked like he was doing better and it was like we were all holding our breaths and then all of a sudden it would change and then it was that whole thing of not being able to eat again and he would be two three days without eating and he wasn't growing and so that kind of that whole phase like snowballed into him having uh being so small and having failure to thrive and all those other things so that's just yeah
Leah (22:25.708)
Wow. What were you planning or able to pump breast milk or was he on formula or was that part of the process too?
Katia (22:36.138)
I was planning on breast milk. So initially that was the plan and that's what I was doing, especially because he was having so many issues. He wasn't really...
eating that much. He would have one or two days and then stop. So I actually had a freezer at home and I was saving everything and we had an incident and someone unplugged the freezer. So I lost all my milk from all those months. But yeah, but um...
Leah (23:01.842)
Um...
Katia (23:09.374)
Almost at the same time is when he started getting better. And then at that point, the doctor said, we still had some milk at the hospital. They said, I mean, we have so little, let's try formula and let's try to fortify it and see if that'll help because he needs to gain the weight. And so that's what we did. And at that point he started tolerating it. So it worked out. Yeah.
Leah (23:30.316)
Oh my goodness, wow. Let's just back up, because this is a big deal. All those of you who are listening and pumping milk, you had a freezer full of milk and it became unplugged. That, you know, that's heartbreaking, is it's hours and hours and hours of time. And that's the thing we're told often in the NICU is, you know, the lifeline.
Katia (23:39.527)
So, yeah.
Katia (23:44.318)
Yes. Yeah, that was tough. Yeah, yeah, that was tough. Yeah.
Katia (23:56.866)
Yeah, that's all you can do. That's what I felt like, you know, this is, he's there working hard in the hospital. All I can do at home is do this and pump, you know, wake up every three hours and go and pump. And that was like my job. And then I was like, it's gone. Yeah.
Leah (24:14.164)
You're a very peaceful person. I would have lost it. Like I almost, it makes me teary-eyed for you then. So yeah, what? Did you cry?
Katia (24:22.718)
Yeah, yeah. It was tough. It was tough, yeah.
I did, I did. That day was difficult. That day was difficult. But then, then it was like, okay, well, at least the timing was good, that it was, okay, well, at this time we have this chance of trying to fortify it, and you know, in the end, that's what he needed. So, yeah, but it was, it was a tough day.
Leah (24:49.272)
So, positive, Katya, where do you draw that positivity, that resilience, that strength to say, okay, I see you setback, I see you challenge, I see you, how do you face that with this mindset? What helps you?
Katia (24:52.35)
Yeah. Hehehehe.
Katia (25:12.63)
Honestly, I think this whole situation, being in the NICU, it changed me in those ways. You have to take it a day at a time, day by day, hour by hour type of thing. I think from then on, that kind of changed the way I look at everything, I think. So if there's any positives, I think that would be one of them.
Leah (25:38.364)
Yeah. And how old is Kyrie now?
Katia (25:42.614)
He is eight now, almost nine. He's in third grade. He's doing great. Yeah.
Leah (25:46.815)
Any.
Leah (25:51.293)
It's extraordinary. And he is an extraordinary little boy.
Katia (25:56.89)
He is so sweet and so patient and he's such a loving human being. He's very smart and he's very calm and yeah, he's just very lucky.
Leah (26:12.06)
Yeah, he's definitely lived a long life in his little young years. Wow. Okay, so if you were, and thankfully for all the families that we support, they get to hear you directly, but hopefully we're reaching more folks, if you were to share some words of wisdom, something that you wish maybe you had known or
Katia (26:15.81)
Yes, yes.
Leah (26:38.909)
that have been shared to you when you were going through this, what would those be?
Katia (26:46.439)
I think I always tell my parents I relied a lot on the nurses especially. They helped me a lot because, well, they filled in that gap between what the doctors were saying and like what me as a mom and what I felt and them caring for my child. So they...
At the time at the hospital, there weren't any cameras when we were there. So they would call me if something happened or like they'd call me early in the morning and say, you know, he had a great morning. Take your time or, you know, come earlier. He's he's not having a great morning or things like that. So relying on them was really a big thing for me. So I would say to reach out to the nurses, the doctors, of course.
And then I think just to have faith, you know, sometimes even in the darkest times things don't look good. It's unfortunately it is part of the process and you're going to have those things and just all you can do is take it a day at a time and have faith.
Leah (28:06.348)
Thank you so much, Katia. It's just so wonderful to spend time with you and to hear of your story and a little more background about everything you went through, which was a lot.
Katia (28:07.97)
Thank you.
Leah (28:21.84)
And if you're out there sitting at your baby's bedside today in the NICU or on your way driving in or on your way driving home or sitting by the camera watching your baby or up late in the middle of the night, because we know we do all of that as parents, Katia and I want you to know that you are not alone and you've got this and we look forward to sitting with you next time. Thanks.
*****
A NICU parent pearl, something we know for sure. Every baby and every NICU journey is different. The story you heard today is this family's story. We hope what you learn here will empower you to ask questions and engage with your baby's healthcare team throughout your NICU journey. As a reminder, this podcast is intended to be purely for entertainment and informational purposes and should not be construed as medical advice. If you have any medical concerns for yourself or your baby, please talk to a medical professional. You all deserve to feel well.
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Thank you.