#026 - What Does It Really Mean to Feel Vulnerable in the NICU?

Hello friends 👋

What does it take to turn a family's darkest days in the NICU into a global mission of hope? In this episode of Beyond the Beeps, host Leah Jayanetti talks with Isabelle Neza, founder of Premi Global Impact (PGI), about the sudden, terrifying arrival of her son Asher at 23 weeks gestation in Dallas, Texas, far from her family's home in the Democratic Republic of Congo. Isabelle shares how a NICU nurse's story, a mentor's soup, and a community she'd known for only four months carried her and her husband through 115 days of setbacks, intubations, and uncertainty. She describes how that experience led her to found PGI, bringing basic needs, bereavement support, and trauma counseling to mothers and premature babies in underserved communities in Congo, Nigeria, and Uganda. A moving conversation about vulnerability, community, and holding on to hope.

Link to episode on youtube: https://youtu.be/wPMpVfVhZrU

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Short Bio: Isabelle Neza is a mom and the Founder of Preemie Global Impact (PGI), a nonprofit inspired by her personal journey as a mother of a premature baby.As a mom who experienced the fear, uncertainty, and hope of having a baby born extremely premature, Isabelle understands firsthand the emotional and practical challenges families can face during a NICU journey. Her experience inspired her to turn a deeply personal story into a mission to help other families.

Through PGI, Isabelle is passionate about supporting premature babies and their families, raising awareness about prematurity, and bringing hope and practical support to families, especially in underserved communities around the world. Her heart is to remind every parent walking through a premature birth that they are not alone and that every tiny life is worth fighting for.

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

Leah Jayanetti (00:01.44)

Welcome back everyone to Beyond the Beeps episode 26. Today we're going to talk about a word we use a lot in the NICU (Neonatal Intensive Care Unit), and that's the word vulnerable. When a baby comes to the NICU with their parents, it's almost always the family's first time being in a NICU. We see in our literature, our research, and at the bedside that the majority of babies who come to the NICU are firstborns, so there's often no comparison, no perspective on what this is like. Even if it's their second, third, or fourth baby, it's a whole new experience — we are very vulnerable. It's a new place, new words, new sounds, new people, a new routine, and we ourselves are brand new too — our brains and bodies are rewiring after birth. Where a baby is born often dictates the care they're able to access. Here in the United States, their zip code, what part of the country they're in, has an impact — and more broadly, what part of the world a baby is born in, or the level of maternal and NICU care available, dictates access to medical procedures and techniques. These all impact outcomes. NICUs themselves, even in the same zip code, vary greatly in design, layout, culture, even visitation hours, and these all impact family outcomes as well. We also know there are fewer and fewer birthing hospitals, particularly high-level birthing hospitals, available here in the US and around the world, so families can be really far from home, far from their communities — even more vulnerable, because they're alone. We also know that the resources and support that come around families can vary greatly, and that community, that dedication, can greatly impact both the outcomes and the experience a family has in the NICU.

Today, joining me to talk about that is Isabelle Neza. Isabelle is a mom and founder of Premi Global Impact, a nonprofit inspired by her own personal journey as a mother of a premature baby. As a mom who experienced the fear, uncertainty, and hope of having a baby born extremely premature, she understands firsthand the emotional and practical challenges families face during a NICU journey. Her experience inspired her to turn a deeply personal story into a mission to help other families. Through PGI (Premi Global Impact), Isabelle is passionate about supporting premature babies and their families, raising awareness about prematurity, and bringing hope and practical support to families, especially in underserved communities around the world. Her heart, in her own words, is to remind every parent walking through a premature birth that they are not alone, and that every tiny life is worth fighting for. She's here joining us today — thank you so much, Isabelle, for joining us.

Isabelle Neza (03:08.014)

Thank you for having me. Thank you.

Leah Jayanetti (03:10.189)

We had a little snafu, so this is our second go-around today — if we sound a little funny, that's why. So please bring us all up to speed: what brought you to the NICU?

Isabelle Neza (03:26.51)

I found myself in a NICU without any warning that this was going to be my life. I was pregnant with our firstborn — his name is Asher — and everything went well during the pregnancy until, at twenty-three weeks, I started having really strong contractions. Because it was my first pregnancy, I didn't know what was happening, so it lasted a week before I said, I need to go to the hospital and just check that everything is okay. I went, and they told me, I'm sorry, your baby is coming, and there's nothing we can do at this point.

At that point, as you know, doctors give a little hope depending on how premature the baby is, but we weren't even really aware that something like a NICU existed. We knew about prematurity, but we didn't know what to expect at all. So hearing those words from the doctor brought so much fear — first, that we might lose our baby, that was the first probability. Second, that he might not have a good quality of life, just because of how early he was. The doctors didn't know what to expect either. So that's how we found ourselves in a NICU, in a world we had no experience with at all, and so much fear.

Going into that, it's one thing — even my husband talked about it, we knew we might lose the baby. There was no family we knew who'd had that experience and had success. We didn't even try to Google it, because in the moment it was just a shock to us. So yeah, that's how we found ourselves in a NICU.

Leah Jayanetti (05:40.614)

You're finding yourself in your first parenting experience starting with fear, which is no way anybody should have to start — it's hard enough to become a parent to begin with, never mind in this circumstance. What part of the world, or country, were you in when you delivered your son?

Isabelle Neza (06:03.179)

I delivered my son in Dallas, Texas — so the US — but my husband and I are originally from the DRC, the Democratic Republic of Congo.

Leah Jayanetti (06:14.095)

And did you have family or friends around? Was this a familiar place for you?

Isabelle Neza (06:20.419)

No, it was not. The closest extended family lived about an hour and a half, two hours away from us. And the funny thing was, it was a really brand-new town to us — we had just moved to the Dallas area four months earlier, so we didn't have time to build community yet, except for our church family. We had just moved from Seattle to Dallas, and four months in, we had this experience.

Leah Jayanetti (06:55.963)

A long way from home, a long way from familiarity, and thrust into a very, very new place — which is, in my opinion, the epitome of scary, when it's your own baby's life on the line. With all of that fear, and then Asher was born — was there a moment you felt a connection, or felt supported, that there was something here other than fear?

Isabelle Neza (07:31.673)

That's a great question. I think the first person who gave us so much hope was a nurse who took me in — he was putting an IV in my hand, and he could see how scared I looked, and my husband too. He started chatting with us, and I remember thinking, I don't want to chat right now. His name was Steven, and he said, you look so distressed, but it's going to be okay — my son was born at 23 weeks at this same hospital 30 years ago. Can you imagine? Now they have so much more equipment that can help your son.

My husband and I looked at each other — we didn't say a word, but you could see the relief. He was the first person who really gave us hope. Then he went on, showing us pictures — look, he's 30 years old now, he's married, the only "disability" he has is that he wears glasses — kind of making us feel more relaxed. That gave us hope: maybe our son would be okay, maybe we wouldn't lose him.

The second person was my boss at the time, who's my mentor now — I worked at the church we attend, and she was the first person who showed up, first thing in the morning, with her husband and a soup. When I saw her walking into the room, it was like, in that moment I needed my mom, who was thousands and thousands of miles away — and I immediately saw her in my mom. They don't have the same skin color, they don't have the same age, but looking at her coming in and hugging me, it was just like, I think we're going to be okay.

We really were — so thankful for a community that had only known us for four months, but they showed up at the hospital, texted us, prayed for us, provided meals. For a whole two months, we didn't cook. We had a freezer full of gifts for the baby. It was such a great moment of seeing family show up when your own family is far away. My husband and I learned a lesson: you may be far, but your community will show up in a way you never anticipated. You might think it has to be people who speak the same language as you — but no. We saw it, and we're grateful, really grateful.

Leah Jayanetti (10:56.079)

That's truly a testament to who you and your husband are, that these folks felt so connected to you so quickly. I really love this — the nourishment your community provided, from the soups, which we know are so important for postpartum recovery and milk supply, the literal nourishment, but also that connection, that support, so you no longer felt so alone out there in fear. That they were there to offload some of that for you is so powerful, and I'm grateful they stepped in in that moment. So, Asher was there for 115 days, which is a long time — what were some of the challenges he faced, being a 23-weeker?

Isabelle Neza (11:49.389)

His main challenge was just, like any premature baby, breathing — his lungs weren't mature enough to do it on his own. So we ran into the challenge of him being able to start breathing on his own. By the time the doctors anticipated he'd start doing so, he wouldn't — he was just like, I'm going to take my time. So we found ourselves in a really challenging season of extubating him, getting really happy, and then a week later they'd have to intubate him again. That happened three or four times — that was his biggest challenge.

He also had a PDA (patent ductus arteriosus) that ended up resolving on its own, and he had a brain bleed, grade four, on the left side, which also ended up resolving on its own — we're really thankful for that.

Leah Jayanetti (13:01.957)

That's like a whole package of things that's really hard to endure, especially the uncertainty of what's going to happen next. It's something you've mentioned to me before, and something I talk about every day with families in the NICU — even just, will this extubation hold, will the next one. Having those setbacks is really tough. How did you handle them when they happened?

Isabelle Neza (13:32.972)

I'd say I felt disappointed. You think you're moving forward, getting closer to discharge, and then it's just, no. We even had to transfer him from one hospital to another, which just brought our hope down.

I'm really thankful — I feel like I didn't handle it that well. My husband was the strongest one. Any time they were going to intubate him again, I couldn't take it, I'd have to leave the room, and my husband was there to support him. It was a real challenge, seeing the hope of getting closer to discharge day go backward, and thinking it was going to take more time. But at the same time, you could see that even the doctors — these babies have their own timing, and even doctors couldn't find a way to make him get there any faster. We had really, really good doctors and nurses who supported us through it, who did everything they could for this baby to move forward — but it was like, I'm going to do it on my own timing.

Leah Jayanetti (15:06.779)

I try to start with families by saying, listen, the baby is the boss — they don't wear a watch, they don't keep a date book, they don't have goals or a mood board for their day. They're just surviving and thriving, and sometimes struggling. But that's really hard as an adult who has goals and plans and a future and a watch, to balance with that.

Isabelle Neza (15:32.736)

At one point you're just told, in one week he'll be extubated, we're going to move forward — you share that with your friends and family, everyone gets excited, and then that week comes and it's, no, I don't think he's ready.

Leah Jayanetti (15:50.152)

That takes the wind out of your sails. But I'm hearing that you and your husband made a partnership — you supported each other, and supported your son, in different ways.

Isabelle Neza (16:05.952)

We did — honestly, if we didn't have each other, I don't know what would have happened. As I mentioned, in those moments he was the strongest one. He was tough, being at the bedside for any major test they'd run on our son — he was there, because I just didn't have the heart for it. And dealing with postpartum, and the fact that I couldn't breastfeed my baby because I couldn't get milk — my husband really had to step in and carry so much of that burden, being there whenever our son needed a parent during a major test.

And really, the community too — I don't think in that moment our strength only came from the two of us. Seeing people texting us, our family checking on us and saying we're praying for you — that helped a lot. It really did. It helped us feel like we weren't alone, and that we didn't have to act like we were strong. I remember trying to pray and not being able to find the words — it was just tears. But with our community and our family, we knew they were praying for us, we knew they were there with us in spirit.

Leah Jayanetti (18:02.457)

I love hearing that you welcomed the support, because sometimes it's hard, when we're very scared and very low, in that fight-or-flight state, to receive and let other people help in whatever way they can. That's such a wise thing you did — wise beyond your years, even if nobody told you to do it, you just did it. That's incredibly wise — that's really taking the best care of Asher, letting the community come in and fill all the little cracks and holes. I love that so much. After the 115 days and all the setbacks you experienced, what was discharge day like?

Isabelle Neza (18:48.426)

Discharge day was a joyful day. My husband was driving, and he said, I feel like I don't even know how to drive anymore, in the middle of Dallas rush-hour traffic — is the baby okay in the back? But honestly, it was a day we'd anticipated for so long, and when it happened it was just, is this real, are we actually getting out of this hospital? It was a moment of renewal — a new season had started, where it wasn't back and forth to the hospital to visit our baby anymore, he was going to be in the next room. Of course we'd still go for checkups, but he was with us now, not somewhere else. It was joy, plus fear, because you're in the car with all these monitors — it's the first time you have a baby in a car, plus a baby who's on oxygen. So really, joy plus fear, but also a new season, one we had looked forward to for so long.

Leah Jayanetti (20:25.583)

I imagine the sun seemed brighter, the colors were different — I love that word you used, renewal. It's truly like a second birth, in a way. So throughout this time, at what point did you get the idea to say, hey, something else is going on here, I need to do something about it — which became PGI?

Isabelle Neza (20:59.605)

PGI — I mean, never in a million years would I have said I'd think of starting something like this. It came about because when we got out of the hospital, my husband and I said, we've got to give back. So we donated to a few organizations here and there, joined some volunteer teams, and then decided that every year, on his birthday, we'd donate to an organization.

On his first birthday, we thought, what if instead of donating here, we try supporting an organization back home. We reached out to someone we both knew, since we're originally from there, and asked them to visit a hospital and see if there were families in need that we could support for our son's first birthday. He reached out and said, we have two families here — pictures and videos, they need help. I asked, what kind of help? He put one of the women on the phone, and she said, I've been here 28 days after being discharged. The way the system works there, you can't leave the hospital without paying the bill first. So this woman had been medically discharged, but because she couldn't pay, she'd had to stay 28 more days — and the longer you stay, the bigger the bill gets.

I knew that was how it worked, but you know how we anticipate discharge day — this mama was waiting for that day, and she didn't have the money to leave. My heart broke. I remember thinking, I'm sorry for having taken for granted that my son was born here — I could have been in that same situation. So we helped her with the discharge payment. The other woman needed formula, since she couldn't breastfeed.

Out of nowhere, I mentioned this to a woman from our church who'd helped us through the NICU, and she said, oh my gosh, I'd love to know how to donate. I told another woman, and she said the same thing. We looked at each other and thought, we need to make this legal — and that's how PGI came to be born. I'm really grateful for the opportunity to give back, and to show women who aren't in the situation we're in that, although we're miles away and don't speak the same language, we see you — we know what you're facing, as women, and as families who've been through the NICU journey. It was our way of saying, we see you, and we want to be close to you, to let you know you're not alone in this journey. That's how we ended up starting PGI.

Leah Jayanetti (24:47.631)

I love it — and you called it a birth story. Those moments of creation, that's how our organization, ICU Baby, was born too, out of our founder Elizabeth Hurson's own birth story. We talk about its birthday, because it really is a birthday — it's really its own entity that we're raising and helping grow. That's incredible. So right now, where are you focusing your efforts — where does Premi Global Impact do its work?

Isabelle Neza (25:22.8)

Premi Global Impact is based here in the Dallas area, but we serve different families. We started with Congo, since that was our first connection. Our focus is more on the rural areas that don't have the equipment, where they need to transfer women to bigger hospitals in town. The healthcare system there isn't the same as here, unfortunately, but there are women trapped in villages who have to travel miles and miles to a hospital that has better equipment — those are the families we felt PGI could come alongside.

When they get to these big hospitals, they have to start over — no family around, not the food they're used to having in the villages. They're honestly alone there, no close family, because everyone's left behind in the villages — just them, their babies, and really no one else. That's where we come in and say, we can help a little — we don't have much, but we can come alongside you. While you're here, far from home, we can help with basic needs for the baby, we offer care packages. We also know some babies don't make it, and for that we help with bereavement costs.

These women spend most of their time at the hospital — they don't have beds, they don't have a home nearby to go rest at, so PGI comes alongside them and provides trauma counseling. We work with volunteers who are counselors, and they spend a lot of time with these mothers, showing them that it's not their fault that their baby came early — that guilt, thinking, my body failed me, my baby was supposed to stay in my womb, plus postpartum depression, which many women experience — we come alongside these mamas and say, it's not your fault, we are here for you.

Those are the people we tend to work with most: women from villages who have to come into the city. Not only in Congo — we're expanding into Nigeria and Uganda as well. Those are the three countries we want to focus on for now. And the way we work is through hospitals, because hospitals know who's most in need, but we also have volunteers on the ground who go and really assess the need, to make sure these are people who truly need our help.

Leah Jayanetti (29:15.953)

That's wonderful — you're really providing wraparound services for folks who, in a similar way to yourselves, are brand-new to a whole new place. It's extraordinary. Since you're here in the US, how many people are working for you or volunteering over there, would you say?

Isabelle Neza (29:48.318)

Over there, right now we have four volunteers helping us. As we expand, we're getting more people wanting to be part of this and volunteer — it's funny how people who've been through the NICU journey really understand this. You bring the idea to a mom and she says, yes, I'd love to help, however I can. Same thing here — I reach out to people and they say, yes, I'd love to help, how can I. They understand the pain, they understand how difficult the journey is. So for now we have four volunteers on the ground assessing needs, but as we move into different countries, more volunteers are definitely coming on board.

Leah Jayanetti (30:42.991)

That's incredible. What are some of the biggest challenges you face as an organization?

Isabelle Neza (30:55.579)

I think, as with any young organization, first of all, you're not on the ground yourself, although you have people you really trust who are there. But when you are there, it feels like, instead of relying on a volunteer, you feel like you could do so much more yourself. I'm really grateful for our volunteers who go above and beyond without being paid, but at the same time, the needs are so many.

Sometimes we have to say, I'm so sorry, we can't do anything right now — turning down families and saying, we wish we could help, but we can't. Hospitals reach out asking, is there any used equipment we could have? And we have to say, we're just not in that capacity yet. It's not being on the ground, but also not having enough resources to meet these needs. We know there's going to be a lot of need, and it can feel helpless, not being able to meet the needs of all these families.

Leah Jayanetti (32:25.125)

I'm familiar, in a different way, with that feeling of not being able to do enough. No matter what — I always try to remind myself it's kind of like standing on sand: you dig it up, and more sand falls in, you dig it up again, more sand falls in. It's a very delicate balance, and having the organization to help protect yourself from that — it can feel like moral injury almost, or secondary trauma. As you've worked and expanded now into two more countries across the globe, what are some things that feel the same?

Isabelle Neza (33:27.539)

Oh my goodness — the emotions are the same. Everything we feel here navigating the NICU is the same there. On our team, we love to say every mama's prayer is the same everywhere: I want to have my baby in my arms, I want to see my baby healed, I want to go home with my baby. Every emotion we experience here is the same everywhere.

Luckily here, we have a lot of resources — you can be discharged from the hospital and keep paying afterward. But there, there's no equipment, no resources in the same way. When I see that, I think, thank God for a place like this country. One doctor told me, when I shared my son's story, I'm sorry to disappoint you, but if you were here, your baby wouldn't have survived. That broke my heart, knowing it could have happened if I were back home, and my baby might not have survived — but knowing there are mamas like me going through that right now, and unfortunately they're not here.

So what can we do, as people who've experienced this abundance? Even though we went through the same emotions, we at least didn't have to worry about where to get food — the hospital fed us. Talking to one of these mamas, the first thing she told us wasn't, I wish I had equipment, it was, I'm hungry. I'm hungry, and because of that I can't produce breast milk — because she's far from home, where she'd normally get food. So you're carrying all the trauma and hardship of the NICU, plus thinking, what am I going to eat, how am I going to breastfeed my baby, and all of that hits you again, and there's nothing you can do to change it.

So when they see a volunteer come and say, we can help with food for now, it's such a relief, and you see how thankful they are. I don't think I was thankful enough for my own doctors, honestly — although we did go back and thank the nurses and the team. But seeing how thankful these women are, it confirms that the emotions, and the prayers, of families over there and here, are the same. They're the same.

Leah Jayanetti (36:52.633)

It's funny that you say you weren't thankful enough — I think you're paying that thankfulness forward. This is the greatest work of gratitude, being able to provide even a part of that for someone else.

Isabelle Neza (37:10.064)

Yeah, for someone else. But also, when I look back and see my son fighting so hard — all these preemies fight so hard — I think they teach us resilience, they teach us courage, but we're not supposed to just see that and relax, knowing our baby went through all of this. Again, this isn't something I ever imagined doing — it's a lot of responsibility, a lot of work. But I know their courage is something I should carry as a parent, and say, they fought so hard to be here, and if these babies are willing to fight for their chance, would I just sit and relax, or would I stand and advocate, speak up, speak to as many people as I can for them? Because they show us courage — tiny humans fighting so hard. It's amazing, and when you think about that, you just think, I have to get out of my comfort zone.

Leah Jayanetti (38:39.461)

Taking it back to your own experience, with Asher fighting so hard — how do you think doing the work of Premi Global Impact has affected how you've processed and experienced your own NICU journey?

Isabelle Neza (39:02.536)

I don't know about other parents, but when I went through the NICU journey, I felt numb. I felt all the emotions — fear, sadness — but I didn't have time to process any of it. Now that I'm past it, I feel like I'm processing it, and I see how hard it really was. Doing this work with these other women, it feels like it's taking me back into the NICU journey, but in a new way — now I can do something. Before, it felt like there was nothing I could do for my baby. I even mentioned, I couldn't pray. But now I can speak up for another baby, I can get out of my comfort zone and do something. There's a way of doing something now that I didn't have then, and it brings purpose, fulfillment, courage — something to wake up for. It's meaningful, it's purposeful.

You see a woman crying and saying thank you, and I think, I didn't do anything, I just told somebody about your story. But it gives purpose now — the fact that I can do something, even if it's just speaking, talking about my journey — it gives purpose, it gives someone the chance to be heard, and it gives stories a chance to be shared around the world.

Leah Jayanetti (41:14.767)

You're giving hope to others — it's really, really powerful. This has been such an extraordinary conversation, and I feel like there are so many more things to talk about, but I'll respect your time. If someone else were on their way to the hospital right now, packing their bag, what would you tell them to pack? What was the one thing you couldn't live without?

Isabelle Neza (41:44.232)

I'd say hope. I brought it with me every single day. In that moment of desperation, of being down and not knowing what to do, I never lost hope, I never gave up on it, because that was the only thing I could hold on to. I wasn't able to do anything else, but I held on to hope. So to any family navigating this journey, on their way to the hospital — hold on to hope. Hold on to hope, and one day, it will make sense.

Leah Jayanetti (42:38.268)

Those are beautiful words of wisdom. You use the word hope — we use that word all the time too, we even have a big walk every year called the Hope Parade. What does hope mean to you?

Isabelle Neza (42:47.047)

Hope, I'd say, is not giving up. Moments of wanting to give up are going to show up at your doorstep, moments of "it's over" are going to be there — but the will to not give up should be right there close to you too. I remember, at one point, I was doing skin-to-skin with my son, and out of nowhere he started decompensating — everything happened at once, doctors rushed into the room, he ended up coding. In that moment, I thought it was over. I rushed outside — I couldn't watch him go through that, my husband had to stay in the room. But even in that moment when I thought it was over, I also felt like hope was there. The sense that I shouldn't give up — it was there. It felt far away, like I couldn't quite hold on to it, but I knew it was there. Going through that moment, at what felt like the end of the battle, you know there's another door — one that says, don't give up, stay here with me, hold on to hope, it's going to be okay.

Leah Jayanetti (44:37.435)

Wow. It's truly incredible. Thank you so much, Isabelle, for being here with us today. And if you're out there listening, wherever you are in the world — maybe you're driving to the hospital, maybe you're walking, maybe you're at home, maybe you have to be apart from your baby because your home and their home are far apart — Isabelle and I want you to know that you are not alone. She's working very hard with PGI, and we're working hard with ICU Baby. There are a lot of organizations and people out there who want to support you in the best way we can. You are not alone, and we're here, and we look forward to being in your ears, or on your YouTube, again soon. Take gentle care, everyone.