#022 - What Happens When Nobody Tells You What to Expect in the NICU?

Hello friends 👋

Victoria Varela-Hefty, director of programs at ICU Baby and mother of James, a 28-weeker born in 2024, shares her NICU journey with honesty and grace. From a high-risk pregnancy complicated by Sjögren's syndrome and preeclampsia to an emergency classical C-section, inadequate postoperative pain management, and a cardiac complication that kept her hospitalized for eight days — Victoria reflects on what it felt like to navigate her own medical crisis while her son was down the hall in the NICU. She speaks powerfully about what was missing: not heroic interventions, but simple things — someone acknowledging her feelings, preparing her for what was coming, and reminding her that asking for help was allowed. She also shares how James is thriving today, and what she would want every NICU family to know about the power of pausing.

Link to episode on youtube: https://youtu.be/XFViuTOw2xo

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

Leah MG Jayanetti [00:02] Welcome back, everybody. I am so excited to have Victoria Varela-Hefti with us here in the studio. Victoria is a native of Miami, where I am also — as you all know, where ICU Baby is located. She grew up here, went to an incredible high school, Palmer Trinity, then went on to Smith College where she majored in political science and government, then over to Florida State University where she got a master's in international relations. She went on to be an educator for four years before turning to the nonprofit world, where she worked at Lotus House here in Miami as the community outreach director. Lotus House is a very special place to us at ICU Baby and here in the Miami-Dade community — they are the largest shelter in the United States for unhoused women, providing wraparound services for women and their children. We have relied on them to provide safe shelter for our families in the NICU, because sometimes a NICU stay can be a very tough time financially and for relationships. We are so grateful to Lotus House for their existence, and of course to Victoria for her great work there. She has just joined our ICU Baby organization as our brand new director of programs, and we are extraordinarily lucky and thankful to have her. But what brings her to this NICU podcast — as you know, all of our guests are NICU parents, and Victoria is as well. She gave birth to her first son, James, in 2024 at just 28 weeks. Welcome, Victoria. We are here to have a great conversation with you. Welcome to Beyond the Beeps.

Victoria Varela-Hefty [02:03] Thank you so much for having me.

Leah MG Jayanetti [02:06] We are so grateful to have you here and have you on our team. You have been embedded in our community your whole life, so it is really wonderful to have you here. Let's go to your NICU experience. Let's talk about what brought James at 28 weeks. Tell me a little bit about that pregnancy experience.

Victoria Varela-Hefty [02:32] That pregnancy experience was filled with a lot of monitoring from the very beginning. I was considered high risk — being a geriatric pregnancy, which I don't necessarily love that term.

Leah MG Jayanetti [02:46] Yes, "geriatric" — that's after 35, which does not qualify as geriatric in any other capacity, but okay.

Victoria Varela-Hefty [02:57] So I was considered geriatric, and on top of that I have a couple of autoimmune disorders. I have Hashimoto's, and a year before they had discovered there might be another one — it was a tie between lupus and something called Sjögren's syndrome.

Both of those required additional blood work and additional monitoring. I didn't necessarily mind, because that meant I got more sonograms. I got to see James more. My favorite sound during my pregnancy was hearing his heartbeat. Every time I went in, they would do the sonogram, find his heart, I would hear it, and I could breathe. His heartbeat meant we were good.

Unfortunately, as a result of the Sjögren's/lupus — since it was new and we hadn't fully figured out what was going on — they started to notice some issues. In May, I started to have some bleeding, which required a couple of emergency visits to the hospital. They monitored me and told me I needed to rest. This was at around 24 to 25 weeks.

I went in one time and they said I was all right — drink more water, I was looking a little dehydrated. I went in another time and they said my amniotic fluid was looking a little low, though they were unsure. They kept having me go back and forth. Then the urine tests came back showing preeclampsia. I was put on bed rest immediately — work from home, no commuting, here's a doctor's note. I was familiar with preeclampsia because my sister had it, so I knew I had to really take it easy, stay hydrated, try to reduce my stress.

This was also happening alongside the amniotic fluid issue. Then during one of the scans, they told me my umbilical cord wasn't operating the way it was supposed to. The way she explained it, she said to think of a hose that's caught up — I was still sending him nutrients, but the flow had slowed down. She said she wanted me to come back in a few more days.

At that point, my family was on full watch. This was around 28 weeks. My dad took me to that appointment. They did the scan. I heard his heartbeat and I thought we were good. But the technician left for a while and anxiety started to build. The doctor came in and said: you're going to the hospital. The flow was no longer just slow — it was coming in bursts. He wasn't getting consistent nutrients. He was tiny. She told me it didn't necessarily mean I was delivering that day. They were going to give me a steroid shot and monitor me.

Leah MG Jayanetti [04:18] How far along were you at that point?

Victoria Varela-Hefty [04:29] Twenty-eight weeks. My dad took me home first because I hadn't packed a bag. I hadn't had my baby shower. There was nothing in the house for a baby. I threw together what I could — a phone charger, a toothbrush, some deodorant — while also figuring out who was taking the dog. My husband and I went to the hospital and I kept telling myself: just because I'm going in doesn't mean I'm delivering this week. Maybe I just have to stay for a couple of weeks so he gets bigger. I hadn't fully processed that I might be delivering soon.

Leah MG Jayanetti [06:26] How was that for you, walking in?

Victoria Varela-Hefty [06:52] It was a whirlwind. I wasn't an emergency — they didn't have to deliver that moment — but it felt like a string of doctors and scans. They put me NPO — nothing by mouth. My sister arrived. She had swung by Target and got me things. They gave me the steroid shot. The neonatologist came in and said: "Don't worry — if we have to deliver tomorrow, I'd rather have a healthy 28-weeker like he's showing than an unhealthy 38-weeker. The outcome is very positive." He said a lot of other things, but honestly, I was in such a daze much of it went in one ear and out the other.

They did another scan. They said we were holding steady. They weren't delivering. I could eat — and I was ravenous. Between the pregnancy and the Sjögren's dry mouth, I was desperate for water.

Leah MG Jayanetti [07:50] So they let you eat that night.

Victoria Varela-Hefty [09:09] Yes. We slept. The next morning they put me back on NPO. In hindsight, I think they were waiting to give me the second steroid shot. Once we got closer to the 24-hour mark, things started to pick up. They gave me the shot, did another scan, and said: we're going to move you to a delivery room. They said it didn't mean anything. But once we got there, my sister was there, my mom, my husband, and a dear friend from Lotus House. After the last scan, a nurse came in and said: okay, I'm ready to shave you. I said: I'm sorry, what? She said: oh, they haven't told you. She ran back out. My doctor came in and said: it's go time.

I asked for five minutes. She gave me five minutes. I had everyone come around, we held hands, we prayed, and I said I was ready. Then I looked at my sister. She had had an emergency C-section at 35 weeks. I told her: I need your strength right now. She said: you've got this.

The nurse warned me that it was going to be very noisy in the OR. I hadn't even thought about a C-section. She stayed with me the whole way. She said: focus on me. We went in. They gave me the epidural. They checked if I could feel my legs. I still felt the left, so they went in for another shot.

I had no birthing plan. I hadn't even had those conversations with my doctors yet. So it was incredibly disorienting. The OR was noisy — everyone was talking over each other, someone was counting. They strap you down, which I didn't know from movies and TV. My husband finally came in after being scrubbed in, and the anesthesiologist nurse held my hand and said: focus on me. Things are happening. And then suddenly I heard screaming.

Leah MG Jayanetti [13:34] That was James.

Victoria Varela-Hefty [13:39] That became my next favorite sound in the world. He came out screaming and didn't stop. He was loud. They brought him over so I could see him. His eyes were wide open. They put him on me. We took a photo with my doctor and the neonatologist. Then they took him away, and I told my husband: go. You're with him. I'm fine.

Leah MG Jayanetti [14:36] And then what happened from recovery on?

Victoria Varela-Hefty [14:39] That's where my health challenges started. I'm a hard stick — they couldn't find a line to draw blood. I was in recovery for a very long time because it took four different nurses and doctors to finally get a line. My whole arm ended up black and blue. The neonatologist actually came in from the NICU to give me a report and ended up standing and holding my hand while they kept trying — he felt so bad. He wasn't technically my doctor, but he stayed with me out of kindness.

Once I was moved to my room, I was still on a magnesium drip for the preeclampsia. I knew from my sister that I had to wait 24 hours before I could go see James. No one told me — I just knew. So I relied on my family for pictures and updates. I knew who was going to give me the most detail. He wasn't intubated. He had a really high Apgar score. He weighed one pound, thirteen ounces.

Leah MG Jayanetti [16:26] Did knowing about the 24-hour hold from your sister help you manage your expectations?

Victoria Varela-Hefty [16:33] Yes, because no one told me directly. A lot of my care came without information. If you don't know what questions to ask, you don't know what you don't know. Knowing that hold existed gave me an endpoint — I can endure this because I know where it's going.

Once the catheter came out, they told me I had to go to the bathroom before they could take me to the NICU. I have a camel bladder. And no one had told me that with a C-section, you need to get up and start walking — that the pain and gas pressure build up the longer you wait. I didn't know that. By the time I was ready to move, I was in the worst pain I had ever felt in my life, with no mental preparation for how bad it would be.

During shift change, a different nurse came in. She didn't know me, didn't know anything. She said: if you don't get up to pee, I'm going to have to put the catheter back in. That meant not going to see James. I told her: give me a bedpan. She said: you can't lift yourself into a bedpan. I said: watch me. I am going to see my son tonight.

Leah MG Jayanetti [19:49] This is a problem we hear about so often — the pain management after a C-section, especially when a mom's baby is in the NICU. What changed once you got a real pain management plan in place?

Victoria Varela-Hefty [20:29] That's also when I was finally able to start pumping. There was no lactation consultant available, so my night nurse — she was wonderful, one of the few nurses from that time I still remember by name — she found the pump, showed me what to do. I started pumping. But no one had called me by my name. It was always "mom" or "mommy." I hated that. I have a name. It felt like such a loss of identity. I was already feeling like my voice wasn't being heard, and now I wasn't even a person with a name.

Still, I had something I could do. It was one in the morning, I was crying while pumping, and I had one milliliter. I decided I was going to take it to James myself. My husband was asleep — he'd been shuttling everyone back and forth with a broken back — so I walked by myself to the NICU. It was the longest walk of my life.

The security guard in front of the NICU was the first person to ask me if I was okay. Not a nurse. Not a doctor. The security guard. I said: I'm just in a little pain. He said: okay, just call if you need anything. I got to the NICU, scrubbed in, went to James. The nurses grabbed me a chair. I gave them the vial and sat there with him. I started what became my ritual: every time I left him, I would stand over his isolette, put my hand on it, pray, tell him I loved him, and then leave.

On the walk back, the CNA came to check my blood pressure. I was sobbing, quasi-hyperventilating. She said: are you okay? I said no. I'm sad. I'm in a lot of pain. She said: okay, I'll come back and check your blood pressure later. And then she walked out. I had never felt so alone in that moment. Even just saying: I'll get your nurse. Even that. Nothing. I just felt so isolated.

Leah MG Jayanetti [24:41] Such a missed opportunity. And you were, what, day three when you finally got a pain management plan?

Victoria Varela-Hefty [24:49] Day three, yes. And until then, the response I kept getting was: just get up and walk. I would try, and I nearly collapsed on the bathroom floor with my mom. She has arthritis — she couldn't lift me. We called for someone to come help. No one came. We grabbed my cell phone and called my OB. She had to call the nurses' station herself for them to come give me pain medication.

We found out afterward that I had had a classical C-section — not the newer incision — because James was breech and they had to move quickly. That's why my recovery was harder and more painful than average. But no one had told me that. The whole time I thought I was just weak.

Leah MG Jayanetti [25:00] And once the pain management plan started, what changed?

Victoria Varela-Hefty [26:55] I was able to start recovering a little. I could pump more consistently. I was taking notes on my phone, sharing updates with my husband through shared notes. But emotionally, I was really struggling. The hormonal drop, the guilt, the isolation — it all started bubbling up. And at no point did anyone stop to acknowledge the emotional side of what I was going through.

Then my fourth day in, I developed pericarditis again — inflammation around the heart, which I had had before with my autoimmune issues. The cardiologist came in. They ran scans, an EKG. They said I needed to stay another night. And that's when they told me there might be concerns about James's intestines — he wasn't passing meconium. There was concern about a potential tear or incomplete formation. They mentioned they might have to transfer him to Nicklaus Children's.

I started to process the worst-case scenario out loud. My family immediately jumped in: it's going to be okay, he's going to be fine. And I lost it. I said: I am allowed to be scared. I am allowed to be mad. I have every right. I went into the bathroom and I shut the door and I cried.

Leah MG Jayanetti [42:00] And then what happened?

Victoria Varela-Hefty [42:00] They called security on me. Because I slammed the door and raised my voice, someone called security. My nurse — not the one who called — intervened and stopped them. She said: she just got bad news about her baby in the NICU. Let me take care of her. My parents physically stood in front of the security guard. My dad said: you are not touching my daughter.

The nurse came in and let me pace the ward because I just had all this excess energy. She said: I can't let you go far, but I'll let you walk it off. When I came back, she said: can I give you something to just bring your blood pressure down? It's not going to knock you out. I eventually let her. She asked if I wanted to eat something. I couldn't eat. I sat down and eventually I slept.

It wasn't until my last day — hours before discharge — that the charge nurse of the mother-baby unit came to find me. She had been on vacation and had heard what happened. She was the first person to say to me: you just went through something terrible. It's okay to be upset. My NICU mamas — you are strong, but you need extra love right now. And I'm sorry you didn't get it.

She was the first person to give me any resources — Instagram communities to follow, including ICU Baby, which is actually how I first heard about this organization. She said: I'm working to bring that culture of support to our NICU moms here.

Leah MG Jayanetti [44:41] That's how much of a difference one person can make.

Victoria Varela-Hefty [44:49] Exactly. I had decent physical care — they were concerned about my physical wellbeing. But no one stopped to acknowledge the emotional reality. The trauma. And without that, I think I pushed myself harder than I needed to. I walked to the NICU alone at one in the morning because I didn't feel like asking for help was an option.

Leah MG Jayanetti [45:48] So let's move forward — James starts feeding. What did that look like?

Victoria Varela-Hefty [47:49] His first couple of feedings were from my milk. But because of the pericarditis medication, I wouldn't have been able to continue pumping for three months. Given everything I was going through emotionally and physically, we made the decision together with the team to transition him to donor breast milk. He received donor milk until about 32 weeks, and then they started transitioning him to formula.

He had acid reflux from the very beginning, regardless of what he was eating. They went through a couple of formula types before finding one that helped manage it. But that meant holding him upright for 30 minutes after every feeding. Sleep was a real struggle, especially once he came home.

The feeding journey was probably our biggest challenge in the NICU. Every day it was: did he poop? How much did he eat? I started keeping shared notes on my phone so my husband and I could track everything and share updates when one of us couldn't be there.

I will say — I had some really wonderful nurses. The ones I jived with, the ones who validated my questions and had patience with me — those were always the good days. They became like aunties teaching me things. One of them taught me how to properly burp a preemie. Another, after the incident where James peed all over the place and I broke down crying, came in the next day and said: as a boy mom — not as a nurse — here's what you need to do. She taught me the trick. I have not had a problem since.

Leah MG Jayanetti [51:22] You were a great student. You just needed somebody to be the teacher.

Victoria Varela-Hefty [51:34] Yes. And those nurses knew I was taking notes. Sometimes I would say: can you pause? Let me write this down. And they would wait and explain further. That made me feel so much more prepared to take him home.

Leah MG Jayanetti [51:49] How is James doing now?

Victoria Varela-Hefty [59:33] He is doing so well. He's on the 30th percentile in weight — he's still small for his age — but his curve is going upward and that's all that matters. His pediatrician likes to say he's a preemie who doesn't know he's a preemie. He's a good eater now and very vocal about what he likes and doesn't like. He points to what he wants and closes his mouth firmly when he doesn't.

Sleep is still our biggest challenge. He likes to be near us — not necessarily held, but he wants to see us or be able to reach out and touch us. If that's what he needs right now, I'm okay with it. He's independent in everything else. Sleep is the one thing he still wants people nearby for.

Leah MG Jayanetti [01:04:27] It makes sense, given everything. Now that you've joined ICU Baby and you're looking back with a professional lens — what do you wish had been there for you in the NICU?

Victoria Varela-Hefty [01:07:41] Having someone come in — not the doctors, because I want my neonatologists and NICU nurses focused on my child — but a dedicated support person. Someone to come in early and say: this is going to be tough, and that's okay. Someone to say: here are your resources. Ask all your questions. It's okay to not know. Someone to remind me that I can advocate for myself, not just for my baby.

And to give space to feel. Because in the NICU, there's so much pressure to just be strong, to keep going. The emotionality never gets acknowledged. You're expected to push through it, and that makes the processing harder and longer. Having that kind of support — that's not your doctor, that's not your family — a professional who can validate what you're going through and sit with you in it. That would have been life-changing.

My husband actually made me watch Inside Out while James was in the NICU. I hadn't seen it before. I cried at the end. I said: that's exactly how I feel — sad and happy at the same time. He said: that's why I needed you to watch it. It sounds silly, but it helped me acknowledge that I was allowed to feel both things at once.

Leah MG Jayanetti [01:12:37] Is there anything you'd like to leave our listeners with — maybe someone sitting at a bedside right now, or a mom on the maternity floor?

Victoria Varela-Hefty [01:12:41] Give yourself grace. And pause. In the NICU, it feels like go, go, go — every hour, every day, every step, every milestone. But when you're not in an actual emergency, slow down. Take a breath. That pause allows your nervous system to regulate. It allows you a little more clarity, a little more peace. It took me a while to learn that. When I started using it, I felt the difference. And sometimes for me it just means giving James an extra squish when I get home.

Leah MG Jayanetti [01:14:21] Beautiful. We actually train with a similar framework — STOP: Stop, Take a breath, Observe, then Proceed. Same concept. And you arrived there intuitively. That says a lot about who you are.

Last question — we're building a virtual NICU knapsack. What is the one thing you never went to the NICU without?

Victoria Varela-Hefty [01:15:23] My phone. Twofold — that's where I kept all my notes, and that's how I shared updates with my husband when he couldn't be there. I also have so many photos and videos. Every once in a while I go down memory lane. One less lead. He's wearing clothes today. It's candlelight care. Taking those pictures and those videos — and even recordings of his sounds so I could listen to him if I couldn't be there. So: phone and charger. Always.

Leah MG Jayanetti [01:16:37] And finally — we're here to uplift hope. What does the word hope mean to you?

Victoria Varela-Hefty [01:17:01] It always means people. All you need to find hope is look at someone else. Those small acts of kindness — even ones not related to you — to me, that's hope. Having worked in challenging environments, what's always uplifting, even when the world feels dark, is how many people are doing good things. There's so much good out there, all the time. It's really easy to find hope when you look for the helpers.

Leah MG Jayanetti [01:18:02] Beautiful. Like Mr. Rogers says — look for the helpers. Thank you so much, Victoria. I can't thank you enough for sitting here and sharing your story with me and with our community. It is so profound and so meaningful.

Victoria Varela-Hefty [01:18:27] Thank you. I hope it helps someone else to hear.

Leah MG Jayanetti [01:18:32] If you are out there right now — maybe in mother-baby or antepartum, or driving to the hospital, or trying to make your way downstairs to see your baby, or up at 3 AM pumping or walking the halls — Victoria and I want you to know that you are not alone. We look forward to being in your ears next time. Take gentle care, everyone.