#023 - How Did Faith and Advocacy Carry the Vassells Through the NICU Twice?

Hello friends 👋

Amber and Andrew Vassell navigated two NICU stays with faith, advocacy, and what they call bubbling. From Austin, born at 25 weeks and one pound one ounce, to Aaliyah at 26 weeks, the Vassells built relationships with care teams, requested meetings, asked hard questions, and chose joy in the most uncertain moments. Now they are channeling that experience into Neo Haven and the NICU Journey Guide, designed to help every NICU family navigate with clarity, confidence, and support.

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

----

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

Leah MG Jayanetti (04:00) Welcome to Beyond the Beeps, Amber and Andrew Vassell. We are super glad to have you here through a connection with Dr. Yasova Barbeau at The Incubator and at HCA University. So welcome to you both — we're super glad to have you.

Amber & Andrew Vassell (04:48) It's an honor to be here. Thank you for having us. Looking forward to the conversation.

Leah MG Jayanetti (04:52) Y'all have had a lot of experience in the NICU (Neonatal Intensive Care Unit), having been three-time preemie parents and twice coming to the NICU. I just wanted to give you the space to introduce your NICU experience to all of us here in the Beyond the Beeps community.

Amber & Andrew Vassell (05:10) Absolutely. I like to tell people that Andrew and I's journey to parenthood is like a miracle. For my first pregnancy with my son Avery, who's seven now, it wasn't a traditional pregnancy. I dealt with high blood pressure, specialty doctors, specialty appointments, being monitored closely — that was what that looked like. But four weeks early he came, four pounds, 0.7 ounces — tiny but mighty. And 24 hours later, they released us and let us take our baby home.

About three years later when we decided we were going to have our second, I assumed my pregnancy would be just like the first. But as things go — and I'm sure the community knows — there's our plans and then there's the plans. On a routine appointment with my specialty doctor, he quickly told me that he wanted me admitted for observation. And from "we're going to monitor you for 24 hours" to "we're going to keep you for the remainder of this weekend" to "we're going to keep you throughout your pregnancy" — it was just a lot of decisions and a lot of thoughts all at once. And I was 25 weeks.

I had a two-year-old at home and we had just started our business. So we had a lot going on. Needless to say, four days later on a Tuesday, they told me they were going to have to take Austin out early — today, right now, in this moment. One pound, one ounce, he came out. He could fit in my hand.

Leah MG Jayanetti (06:47) What was the cause? What were they telling you?

Amber & Andrew Vassell (06:51) For Austin, it was the hypertension, the preeclampsia. The placenta and the fluid that needs to be present — there wasn't enough, and they needed to take him out immediately. That was our thrust into becoming NICU parents, and it was post-COVID. We just had to jump in feet and head first, feeling somewhat alone at the time, especially because we couldn't have visitors come see us.

I think because Andrew and I had run a business together, it almost morphed into that — we were able to lean on each other. When we needed to, we advocated for ourselves, navigated, asked questions, pushed back when we needed to. I like to say we did NICU good. There's no good way to do the NICU, but we really made it our main focus and we did a really good job.

I just think we were overly optimistic from the beginning. Even when the doctors told us they were going to have to deliver Austin 15 weeks before he was due — which was shocking — we looked at each other and said: we are just going to stay positive. We know our child is going to make it. For us, it was never "if" — it was just "it's going to happen." Speak life into the baby, even at 25 weeks. That's some of what carried us through.

Leah MG Jayanetti (08:46) Yeah, and then you went ahead and did the NICU again.

Amber & Andrew Vassell (08:51) We tried everything in our power — eating right, getting the right sleep, all the things. But like she said, there's our plans and then there's the plans.

It was pretty much the same. We went in the day before our anniversary for a routine appointment and they said we needed to be admitted. At the time we had just moved to Tampa, and we had two kids being watched by a friend. We were like, we have to go home and come back. Thankfully, at HCA Brandon, I had an amazing nurse — I believe her name was Mary — and she said: "I think you should stay. If you leave, there may not be a heartbeat when you come back."

So they admitted us. I remember sitting in those uncomfortable green chairs that everyone knows if you've been in a hospital or NICU space. I was the only one in the room right before they strapped me up, and I heard God say to me very clearly: "Count everything joy. No matter how long you have to be here, no matter what doctor you have to see — count this joy." And ever since I did that, even having this conversation with you is a product of counting it joy.

Leah MG Jayanetti (10:10) That's very profound.

Amber & Andrew Vassell (10:15) Of course, as the wife and the mother carrying the baby, she's going through the experience physically. But as the husband, the caregiver, and the support person, it's a lot for me as well. That second time, we had done everything in our power to avoid this, but 26 weeks into the pregnancy we're in the same position.

I remember when they rolled her back — because they had to sedate her and put her under — I wasn't able to be there when our daughter was born. With the first NICU experience I was there, holding her hand, supporting her. But with this experience I just felt helpless. I was sitting in the room waiting for an update — how's it going, how's the baby, how's Amber?

But again, we always tried to remain as positive as possible. Instead of letting those negative thoughts creep in, drowning those out and replacing them with more positive ones.

Leah MG Jayanetti (11:25) It sounds like from the stories, there's that separation — especially you, Andrew — not just from your baby but from Amber. Were you able to go with the babies to the NICU when they were first born?

Amber & Andrew Vassell (11:44) Yes. With both situations, once they were taken down to the NICU, Amber was getting settled and catching her bearings back in the room. But I was able to go to the NICU and see both babies when they were placed there, and call her so she could see them. That was another tough thing for me — I was able to see the baby first, even though they were in an incubator and I couldn't really hold them. At least I was able to be there in those first moments.

Whereas Amber had to see her children on a phone call — that was tough. But at the end of the day, they're healthy and they're here, so that was the outlook.

Leah MG Jayanetti (12:32) Yeah, for sure. That's a very important moment that is taken from us as mothers and thrust upon fathers — to do that NICU admission. You wanted Austin to know and you wanted Aaliyah to know: daddy's here, I've got you. That is an experience. It's something we advocate for parents to be able to be present for as much as possible. Certainly if procedures are happening people may need to step out, but for babies to hear their parent, to smell their parent — there's no class or pep talk that prepares you for walking down there. How was that experience for you, Andrew?

Amber & Andrew Vassell (13:27) To be honest, the first NICU experience was during COVID. Our son was born in March 2021, exactly one year after COVID began. Walking into the NICU, we had to wash our hands for about a minute, put on a mask, and walk in. When I walked in for the first time and saw Austin — all the wires, the feeding tube down his throat, so small — I just broke down. I couldn't help it. I feel like even the toughest of men in that situation, the emotions, if you care for your children, you just couldn't help it.

I called my mom. Her and my dad had moved from Atlanta to San Antonio a few months earlier — a portion of our support system had moved away just before all of this happened. I remember calling and breaking down crying, and my mom said: "I'm on the next flight." She came out and helped us.

In that moment it was just so much emotion all at once. My dad got on the phone and said: "Drew, you've got to be there for your wife and you've got to be there for your son. It's okay to feel, but at the end of the day, you've got to be there for them." I was able to get it together. I gave Austin a pep talk — I recorded it, I still have the recording — and just said: you're going to be fine, daddy's here for you, you're a fighter, you're going to make it.

For Aaliyah, having gone through it once, it wasn't as emotional — still emotional, but I'd been there before. And having Austin there as an example — he was three when Aaliyah was born — seeing before and after just gave even more reassurance that she was going to be okay.

Leah MG Jayanetti (15:50) And Amber, you really were alone — how was that period of transition into the NICU experience for you?

Amber & Andrew Vassell (16:17) For Austin it was: we do what we have to do. Not being there when he first came to be was definitely tough, but when they rolled me down there, seeing how little he was — because that's not something they prepare you for when you have a baby so early — in that moment it was as if: my baby's home. The NICU was our home. We're going to treat it as such. We're going to sing to him, read to him, talk to him. We're going to have Avery write letters and send bears. We're going to make this our normal.

I'm going to make this NICU experience, which is so abnormal for most, be as normal to us as possible. This is his baby journey. That's what really got me through.

Leah MG Jayanetti (17:20) That instinct to normalize something atypical — it's such a successful approach, such a resilience mindset. Where do you think that came from for you guys?

Amber & Andrew Vassell (17:58) Ultimately, we are firm believers. Our faith is our foundation in everything that we do — it serves as our anchor. Because of the faith that we have, we know that ultimately there's a higher power who is in control. If we just have faith and continue to move forward, knowing that everything's going to work out in the end, staying positive even when things don't seem to be going the way we'd want — that's always been our approach.

And in this family — that's us five — we have a saying. We go on walks, come back, put our hands in a circle, and say: "Vassells Excel." That was our creed. We're going to excel in the NICU, give our baby the best, and advocate the most for him while we're here. And Aaliyah was the same. Once Aaliyah came, we did the same thing — we bubbled, we advocated, we navigated. And ultimately, Vassells excelled.

Leah MG Jayanetti (19:28) For sure. I want to step back to something really important for a lot of our families — the high blood pressure and the preeclampsia. With a history, that already escalates fears during a subsequent pregnancy. What was the care like for you?

Amber & Andrew Vassell (20:01) When you first get pregnant, you don't know what you don't know — that just happened to be what I had to do. With Avery it wasn't so high-risk, so when the second pregnancy came I just assumed I might have to see the doctor more. I didn't realize that wasn't the norm.

Now that I've been through both experiences, what I realize is it's not just about doing your best — sleeping right, eating right. It also means addressing things like fibroids. I knew I had them. But knowing what I know now, I would have done something about that before having another baby. Where improvement could be is: after having a baby, you need a full checkup. Having doctors who look at you from head to toe to optimize your body — that was just my normal. I didn't think anything different until that second pregnancy, and then I realized: this is not how it's supposed to go.

Leah MG Jayanetti (21:31) Yeah, I'm glad they were able to catch it before it escalated to eclampsia. I love that you're talking about interpregnancy care. When your baby is in the NICU, you're pouring so much into your baby, your partner, your other child — but stepping back and asking, what do I need? What were some things that allowed you all to show up the way you wanted to in the NICU?

Amber & Andrew Vassell (22:26) Honestly, the first thing I would say is having each other through this process. We know that everyone's situation is different — there are people who have to go through this alone as a single parent, and my heart goes out to those people. There's a spectrum: some families are in the NICU for a week, and then there are families like us in for five months. To go through something like that by yourself for that long — I can't imagine.

So the first thing is having each other to lean on. Sometimes we couldn't go together because we had another child at home, so we'd rotate. Some days she'd come back and it was heavy, and I'd be there to support her, talk her through it, stay positive — and vice versa. That carried us through.

We also had really great hospitals — shout out to HCA Brandon. Great staff, great nurses, great doctors. We didn't have horror stories. We had nurses and doctors who were truly invested in our baby and in us — and that makes it easier to show up.

We also just decided we were going to advocate, whatever that looked like. I have friends in the nursing space, and when I got pregnant, one of them told me: doctors and nurses aren't working for you per se — but you're a team. When you go into that room, speak up and advocate for yourself. So I applied that to Austin and to Aaliyah — because who's going to do that for them but us.

Leah MG Jayanetti (24:36) Yeah, that's absolutely 110%. You are the parent head of the NICU team. There's a neonatologist head, a nursing head, a respiratory therapist head — especially with very low birth weight preemies — a social worker, and a parent. You guys stepped into that role excellently.

What kinds of things did Austin or Aaliyah go through? At 25 and 26 weeks, that's a full spectrum of experiences.

Amber & Andrew Vassell (25:28) Real quickly, if I may — I want to add something first. As Amber was talking, she mentioned the relationships we built at HCA Brandon and also at Kenneth Stone. Both hospitals were amazing. But what I think helped build those relationships was the way we approached the NICU.

Each parent approaches the NICU differently. What we made a point to do was get to know the nursing staff. When we walked in: "Hello Karen, hello Jennifer" — address them by name, ask how their day is. Build that relationship. When you as a NICU parent are building relationships with the people caring for your children, it makes them want to care for your child even more. So speak to people, let them know who you are, so that when they come in, they also address you by name. That's something Amber advocates for strongly as well.

Leah MG Jayanetti (26:44) That's perfect — relationship building is key. Did you attend rounds? Were those things you were part of?

Amber & Andrew Vassell (27:04) The first time, we didn't even know you could do that. Nobody prepares you for the NICU — people prepare you for pregnancy, but not for the NICU, because no one thinks you're going to end up there. With Austin, the staff was great but we didn't really have formal meetings with the doctors.

With Aaliyah, that was our first introduction to a care team meeting — where we sat down at least two to three times throughout her stay, between HCA Brandon and also when she got transferred to Johns Hopkins. We were able to meet with the care teams, discuss what she was on and what the plans were. And we advocate that for all parents: sit down with your care team, request that meeting, so that you're clear about your baby's care and they are as well.

Also, on days when we weren't physically present for rounds, we always asked: please call us so we can still be involved. We'd listen in and give feedback, ask questions. We always encourage families to do the same — even when you're not there, ask them to call you in.

Leah MG Jayanetti (27:58) Yeah, clarity is pivotal in these high-stress, relatively life-and-death situations. So many families are worried that if they speak up too much or question too much, they'll be seen as difficult parents and worry about their baby's care being compromised. Did you ever have that hesitation?

Amber & Andrew Vassell (29:52) This is my baby. And if I'm honest, personality-wise, I'm naturally a speaker-upper. So I'm going to speak up for myself and speak up for my baby. This is the one baby you get — and if there's ever a time to step out of that uncomfortable zone, it's when your baby is in the NICU in front of those doctors. There's a way to effectively communicate in high-stress situations when emotions are running high. But setting that expectation upfront — this baby has a team, and it's us first and you guys second — helps them know: we've got to make sure we're calling the Vassells, things need to happen a certain way. The care team starts with us.

And I would say Amber is naturally the speaker-upper. When we first got married, I was more of a keep-the-peace person. But having been with Amber for almost ten years, some of that has rubbed off on me. I've been able to have uncomfortable conversations, and sometimes those are needed. Those uncomfortable conversations bring about change. Even when it feels uncomfortable in the moment, you look back and say: I'm glad I said something, because I see the change.

I have a couple of examples. One was a doctor we really liked at Kenistone during COVID, when vaccinations were being offered. For us, we didn't want our 25-weeker vaccinated at that time. I remember the doctor bringing it up in conversation. I had to stop her and say: I want you to put in my baby's notes that this is not something I want, and I don't want to be asked about it again. Very firm and clear, but not rude. It was totally respected — no bad feelings on either side. I just wanted it documented.

Another example: we had a nurse we didn't gel with — it just happens. I spoke up and said I would prefer this nurse not be on his care anymore. I use these examples because this is what advocacy tangibly looks like. Sometimes people don't speak up because they want to keep the peace. When you have the urge to speak up, be a speaker-upper.

Leah MG Jayanetti (33:31) Yeah, I'm glad you raised those examples because they happen every day. Andrew, as a non-speaker-upper — which is now forever in our vernacular — how did you work through that?

Amber & Andrew Vassell (34:28) For me it was about confidence. We weren't in the medical field, we didn't study these things. Not having the confidence to articulate what I wanted to say or explain things medically — that was the challenge. Working through that with Amber, I just took the time to do research.

An example with Aaliyah: there was a certain formula they wanted to put her on. We're very conscious of what we put in our bodies — reading labels, organic, natural, that's our preference. When I looked at what they were giving her and read the ingredients, things seemed questionable. So I said to Amber: I'd really like her to be on a different formula. She said: speak up, but let's do the research first so we can come with options.

We did our due diligence, found a couple of alternatives, brought them to the care team meeting, and said: we appreciate the formula she's on, but here are a few others we researched — would you be willing to consider them? And ultimately, we did make that change.

Leah MG Jayanetti (36:22) So it sounds like what you did — solution-based problem solving. You had a big feeling, something instinctual, and instead of bringing it up without knowing where to take it, you stepped back, did the research, and when you brought it to them, you were working as a team. Is that right?

Amber & Andrew Vassell (36:53) Exactly. And I'm thankful for Amber because of how we were both raised. Amber was raised in a setting where she was allowed to speak up and give her side. Whereas with my parents it was more: this is how it is. As a child I learned to just hush and accept it. Meeting Amber and seeing how she interacted with her parents versus how I did with mine — initially I thought it seemed a little disrespectful. But it wasn't. You should be able to respectfully voice how you feel. She really helped me with that over the years. Now I'm not afraid at all to speak up for myself.

Leah MG Jayanetti (37:54) That's great. Speaking up might be uncomfortable now, but this is your only baby. If not now, when?

Amber & Andrew Vassell (38:05) Right. But I also think parents don't know that they can research their baby's formula. We knew that the second time because we'd been through it. There is just a miseducation there — no one prepares you for the NICU, and even when you get that packet of information all at once, it doesn't land in that moment.

Leah MG Jayanetti (38:46) And that brings us perfectly to the next baby you are birthing — Neo Haven. You've taken your experience, your wisdom, your skills, and created something. Tell us about that.

Amber & Andrew Vassell (39:08) In formal terms, Neo Haven is a healthcare and education technology company that we founded.

While we were in the NICU, there were a lot of gaps — not just from a parent side, but we could also see the gaps from a hospital and organizational side. We took all of that knowledge and packaged it up. Our first flagship product is the NICU Journey Guide.

When I was wheeled down to see Aaliyah that second time, I heard so clearly: you can't come here twice and not leave a mark to help other people navigate this more easily.

The NICU Journey Guide is the guide that's going to help parents navigate the NICU with clarity, confidence, and support. It's parent-focused but hospital-friendly — a merge between talking to parents and considering the hospital perspective. It's been reviewed by nurses in the field and NICU doctors. We wanted to create something that truly assists families from day one to discharge. Because a lot of times, depending on how long your baby is there — for us, five months and four months — you're not fully active until about 30 days in. It takes time to get acclimated to this new world. We wanted to create something that helps you get acclimated from day one and even helps you envision what discharge looks like. That's the NICU Journey Guide, and I'm really proud of it and excited to have it launched.

Leah MG Jayanetti (41:07) Yeah, and the launch date is coming up next week — May 7th. Outstanding.

Amber & Andrew Vassell (41:12) And interestingly, we've been able to become March of Dimes ambassadors. Our hospital loved us so much that they asked us to be the Tampa ambassadors, and we gladly accepted. Throughout our campaign, our goal was $5,000 but we raised $44,000 — and counting — while really learning more about how March of Dimes helps women and babies through pregnancy.

So May 7th we have an amazing event called the Mothers of Miracles Luncheon — a luncheon catered specifically for NICU moms, right around Mother's Day. It'll be at Fleming's Prime Steakhouse here in Tampa. We'll have about 13 to 15 moms — some already NICU graduates, and a handful who are currently in the NICU here in Tampa. We're really excited, and at that event we'll be able to gift some of the moms currently in the NICU with a guide.

Leah MG Jayanetti (42:25) Wow. That's going to be a very powerful day. How extraordinary.

Amber & Andrew Vassell (42:38) You know, Leah — and I'm sure you can relate as a NICU mom yourself — NICU moms are built different. As part of our campaign, we did a NICU appreciation day for the nurses at HCA Florida Brandon and made them T-shirts that say: "NICU nurses are built different." I bring that up because NICU moms are built different too. The way you have to navigate having a child come into this world and not be able to bring them home — that needs to be acknowledged and honored more. That's really where the idea for this NICU luncheon came from.

We want to spotlight these moms who have an unusual beginning to their relationship with their child. And seeing the outcomes — because we had them send in their bios and pictures from when their baby was in the NICU and what they look like now. These miracle babies turn into regular older babies.

Neo Haven will do this every single year — just to honor NICU moms, get together in an intimate setting, talk about what we went through, highlight it, and make great connections.

Leah MG Jayanetti (44:06) Yeah, you're continuing to build community. There's a lot more of us out there, and when we have someone with us and supporting us, it makes a big difference. Speaking of post-NICU — how are your three babies doing now?

Amber & Andrew Vassell (44:38) Man, they're all thriving.

Leah MG Jayanetti (44:40) The smile — for people who are listening, you can't see this, but the camera just lit up. Tell me about them.

Amber & Andrew Vassell (44:49) I love being a parent. And they're thriving. I'm also on the PFAC — the Parent Family Advisory Council (PFAC) — board at Johns Hopkins, so I love all things hospital and NICU.

For our kids: Avery is seven. He's a strong leader and very kind. Austin is feisty and fiery — you would not know he was ever in the NICU, other than his petite size. The only outside complication he had was glasses, and they are so handsome on him. And our daughter — I thought I was going to be an all-boy mom, but God had different plans. And thankfully his plans are way better than ours, because we love having a daughter. The boys love their sister. She lights up a room. They're all doing great.

Aaliyah is doing really well too. She sees a few specialists here and there, but for the most part she's doing great.

Leah MG Jayanetti (46:33) She's still young.

Amber & Andrew Vassell (46:34) Yes, 19 months. Perspective is always something that keeps us grounded and grateful. Because there's a spectrum — some people have long-life effects after the NICU, still impacted as adults. But neither of our NICU babies has that experience. Austin wears glasses and had some eye issues, but to us that pales in comparison to what some parents are dealing with. Having that perspective keeps us even more appreciative of each one of them.

Me and Amber the other day were looking back at some of those NICU pictures, and man — seeing what they were when they first came and what they are now. How can you not just be happy?

Leah MG Jayanetti (47:44) Yeah, it's awe inspiring. Your stories are truly extraordinary. I'm wondering — now that you're home and still very much in the thick of it — what does hope mean to you?

Amber & Andrew Vassell (48:37) I think hope is another word for belief — true belief. It translates into hope. Because when you can believe without doubt...

I remember with Austin, a respiratory therapist came in and told me that if he were under a certain weight, they wouldn't be able to intubate him. And I was like: so what do you do? And she said: we just don't. I laughed and said: that's not going to happen. Having so much hope that it fills the room — that's what translates for me. I had a belief so strong that Austin was going to make it, that they were going to be able to intubate him — and it pushed out whatever she said and filled that room.

For me, hope is seeing the end already, even though you're not there yet. I always saw the ending. And I'm living that literal hope today.

Leah MG Jayanetti (50:01) Leave no room for doubt. Fill the room with hope. Beautiful. What about you, Andrew?

Amber & Andrew Vassell (50:04) For me, staying on the topic of Neo Haven and the NICU Journey Guide — our hope is to change the trajectory of how people approach the NICU from day one. The concept when we created it was family-focused but hospital-friendly. Our hope is that parents are loving it and hospitals are loving it, and that it's adding value in the sense that parents are better advocates, more informed about what's happening with their child. When you have parents who are more informed and can advocate better, you get better relationships across the entire care team. And the hope is that this is the beginning of something new in the NICU space with Neo Haven and the NICU Journey Guide.

Leah MG Jayanetti (51:14) Amazing. If it's okay with you, I'm going to read what you actually wrote to me about hope, because it's really powerful.

"Hope for us is rooted in perspective and faith. I remember sitting alone in the hospital room right before Aaliyah was born. I was in that rocking chair that so many parents know, and I felt God tell me that no matter what happened, I was going to count it all as joy. And that is what I chose to do. Counting it as joy means choosing to see the blessing in every moment, no matter what it looks like or feels like. When you live from that place, hope becomes something you naturally lean toward. It becomes harder to see things as hopeless because you have trained your perspective to look for what is still good, what is still working, and what is still possible."

Amber & Andrew Vassell (52:06) That was powerful.

Leah MG Jayanetti (52:06) That's you — you need to hear that back to yourself. That's what I see from you all here, and that's what I hear you wishing for everybody else and putting into action. Empathy plus action is compassion. That's what you all are doing. And the world is a better place because of it.

Is there anything else you'd want to share with a family sitting by their baby's bedside right now? If you could reach in and whisper in their ear.

Amber & Andrew Vassell (53:30) I'd give them a hug first. A virtual hug. You are not alone. There are people who have walked this before, and their babies are three, five, 19 months — and doing well, thriving. So though today doesn't look like that, have the hope to see what it will look like. Through our story, through our journey — that's what I would tell them.

And I would just tell them: it's okay to feel how you feel. A lot of times when something like this happens, you almost feel like you have to suck it up and push forward, and that's not healthy. It's okay to feel. It's okay to sit by your baby's bedside and cry. Let it out. Don't soak in it, but feel it. Let people know how you're feeling. When you're not caring for your mental health, that permeates. So feel, build a support system, people you can call when you're having a tough day — and you're going to get through.

One more thing — something we actually talk about in the guide — is what Andrew and I lovingly call "bubbling." When we first had Austin, we naturally bubbled. It was just the two of us first, and then whoever we wanted to include in our bubble, we'd run it by each other. We didn't include everybody, because even the most well-meaning person can sometimes make things worse when emotions are high. So I would tell a parent: it's okay to bubble. It's okay to tell exactly who you want to tell. If you want to share with the world, please do. But it's also okay to decide who you want to involve. We lovingly call that bubbling, and we talk about it in the guide.

Leah MG Jayanetti (56:04) I love that language. It's very true. The "famerazzi" can be intense, and even with great intentions they can say some painful things. Just having to retell your story every day to a new person is exhausting. I love that you created that language for bubbling and cared for each other in that way. Amazing.

We build our virtual NICU knapsack. What's one physical thing you'd bring to the NICU every time, or want every family to have?

Amber & Andrew Vassell (56:51) Books for the baby. We made it a point to read every single time we went. Not all hospitals have little libraries for the babies. So I would always make sure to have a little book — for yourself too, maybe when the baby's sleeping — but bring a book and read with your baby every single time you go.

For me, I can't think of a specific tangible thing. But I would say: always bring a positive attitude when you go to the NICU. When we first went with Austin, our nurse Gene — really cool guy — the first thing he told us was: don't get too high on things. What he meant was: the NICU is up and down. One day you get a great report and you're feeling amazing, and the next day things aren't so great. He was giving us a heads up to be prepared for whatever may come. So always bring a positive attitude. No matter what news you get during rounds or the daily report, remain optimistic. Everything will ultimately work out.

Leah MG Jayanetti (59:08) Yeah, that's pretty tangible. That takes a lot of packing. That's wonderful. I'm super glad to have met you guys. I feel really fortunate, and I look forward to being in this space with you all forevermore. Thank you so much for introducing yourselves to our Beyond the Beeps community.

Amber & Andrew Vassell (59:41) Leah, we want to give you your flowers as well. We're thankful you've created this platform, because these stories need to be told. There needs to be a place where people going through this situation can hear from others who have lived this experience and find hope and inspiration: I'm not alone, it will be fine, we can get through this. So thank you for Beyond the Beeps and the community that you serve.

And I'd also like to add: May 7th is our launch date for the NICU Journey Guide. The website is nicujourneyguide.com — it'll be available May 7th.

Leah MG Jayanetti (01:00:29) Awesome. I love it. Thank you so much for your time and energy — not just here with me today but clearly in the whole community. You're really wonderful humans and I feel so lucky to have met you all. I look forward to having another conversation sometime soon.

And to all of our listeners out there — thank you so much for tuning in to Amber and Andrew's story and their sweet, sweet babies. If you're by your baby's bedside, maybe you're driving to the hospital, walking, pacing, or pumping — the three of us want you to know: you are not alone. Take gentle care.