#285 - 👶 Communicating in the NICU : Insights from Valerie Hernandez

Hello friends 👋

Being a NICU parent comes with many challenges, but communicating with your baby’s healthcare team and loved ones doesn’t have to be one of them. In this video, NICU parent Valerie shares her personal journey and offers valuable tips for effective communication with doctors and medical providers. Learn how the right tools and conversations can improve your NICU experience, while also highlighting the importance of self-care, hope, and trust during this difficult time. Whether you’re navigating the NICU or supporting a loved one, this episode provides crucial insights for every NICU family.

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Chapters

00:00 - Intro – Welcome and overview of the discussion.

05:30 - Navigating the NICU in a Foreign Language

10:44 - HELLP Syndrome Warning Signs

17:55 - Managing Medical Conversations with NICU Doctors

21:18 - Tips for Tracking Your NICU Baby's Progress

27:01 - Updating Friends & Family on Your Baby's Progress

33:12 - Share the Beautiful NICU Moment

36:27- Asking for help and self care in the NICU

43:39 - What Does Hope Mean in the NICU

45:30 - Say No to Mom Guilt in the NICU

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

Leah (00:03) 

I have always cared a lot. As a kid and even as an adult, I have big feelings about almost everything. And sometimes that can cloud my ability to get my point across. To listen or understand, essentially to communicate. I can and definitely have gotten myself into some hot water for not communicating well. I wanted to feel heard. I wanted to be validated. I wanted to understand. 

and I wanted to make things better. And sometimes I was so afraid I couldn't even speak when I probably should have. I think this is probably a similar feeling that many people have, especially when we're in a really difficult or emotional situation. And there is nothing like the emotional situation that is parenting. And there is really nothing like parenting in the NICU. 

In an instant, a NICU parent is thrust into the role of the parent head of the NICU team, which means you have to learn a new language, medical terminology. Understand the roles and names of dozens of new professionals charged with helping your baby so you can talk to the right person and get the right information. You have to listen to and try to translate new sounds and sights coming from machines 

you may never have seen before. And you have to learn your baby's communication. And then, likely become a PR manager for your situation and report back to family and friends who care a lot about you but really have no idea. and all the while, on little to no sleep, maybe a package of crackers, and in a state of fear. It is a lot. Clear. 

Regular and open communication can really help during this time, but is also completely understandably not in the top of your mind as you're fighting for your baby's life and trying to make it to the next hour, day, or week. Thankfully, we have Valerie, who is here with us today to help make some sense of this whirlwind, to give us some guidance and wisdom on how we can navigate all of these new roles as our baby's manager, advocate, 

protector, and most importantly, parent. Valerie Hernandez is the marketing strategist at SCG Advertising in New Jersey. In her 25-year career, she's worked with clients like St. Jude 

Children's Research Hospital, Comcast, Campbell Soup Company, AIG, Northwell Health, Tiffany & Company, KPMG, and many more. She also worked 

abroad in Paris, France as a communications manager for a startup telecom company, which sounds like a lot of fun. Valerie is also a NICU mother, twice over even. She is the mom to Violette, 14 years old now, and Reese, who is an adult at 18. She has been a NICU parent mentor with ICU Baby for seven years. 

In that time, she has mentored more than 150 families through their NICU journeys with her shared experience, wisdom, and gentle girlfriend guidance. She is also a contributing editor to our My NICU Baby book. And she has been married for 20 years, which by the way was through two NICU stays, the teenage years, a pandemic. So you know her communication game is on point. 

Her professional experience and compassion makes her uniquely gifted to talk with us today about how we can use our communication tools and skills to improve our NICU experiences. Welcome, Valerie. 

Valerie Hernandez (04:08) 

Thank you, Leah. That was a really beautiful introduction. I wasn't expecting that. That's awesome. Thank you. I'm really excited to be here. A big fan of Beyond the Beeps. 

Leah (04:16) 

Yeah, we're seeing. 

We're so glad to have you. And it's been, you've been on my wish list for a while. So I'm so glad to have you here today. So can you give us a little orientation about your NICU experience? What brought your two babies to the NICU? 

Valerie Hernandez (04:35) 

Oh, so my first NICU experience was with my first child, my son, who was born 18 years ago. And he was born at 32 weeks because I had a rare complication called HELLP syndrome. And so he had a good NICU stay of about six weeks. My daughter was born at 34 weeks. 

And that was just 10 days. It was easy breezy after what we went through with with Reese, my first child. So those have been two experiences that lived with me for a long time. 

Leah (05:12) 

Yeah, they're really impactful moments, especially as a new mother, right? 

I think you had mentioned to me that Reese was born in France where you were living at the time, but you're not a French native born person and French is not your native language. I know being in a different country can have benefits or challenges. How did you find that experience as, you know, being put into the NICU where that wasn't your native language and everybody's speaking French around you? 

How was that for you? 

Valerie Hernandez (05:49) 

So it was really interesting. I had been living in France for two years. When I got to France, I didn't speak a word of French. So I was still in the process of learning the language, even though I was working there, had a great job, had a great life, had family. But I had never even been to the hospital. And in fact, my pregnancy experience is not at all what I planned, because in France, you have the public health care system, and you could give birth in the public hospital, which is great. but it's very clinical, it's almost like military style, right? Or you could give birth in a private clinic. And I had planned on giving birth in the private clinic and I was familiar with that clinic. So when Reese came early, and he came early, as I mentioned, because of HELLP syndrome, I wasn't prepared for that experience. I had never even been, like I said, in a public hospital. And it moves fast and it's not that family-focused care. 

So I was stuck still learning a language. I was overcoming a really difficult delivery where I was not my best self at all. I didn't have, I had my husband's family around to support me, but you know, still kind of a newlywed. I didn't have my mother, my sister, my father near me. And I was getting a lot of information in really quick French, which I was processing. 

But there's terms that you don't know in English and you don't know in French. And I was there alone all day because my husband had a big job. He couldn't just take off work like that. And so it caused problems. You get through it, but it brings this kind of, you feel a little timid, you feel the normal exhaustion of the NICU and you kind of, all those things that would allow you to maybe. 

think differently on your own soil, just it hits differently. It feels different when you're in another country. So it adds another layer of complication. But thankfully everything turned out okay and I'm really grateful for all their great care. 

Leah (07:56) 

Yeah, I think this is something that's more common than many of us think, because babies don't, you know, they don't really care where they're born and they would love to interrupt your vacation also. I mean, we see so many baby moon babies. getting, you know, then also having folks brought to particular hospitals where we are, there's, you know, they're brought from other countries because they need the care that we have here in the States or and I imagine that to be true throughout the world. So I think it's a real honest thing about not only are you sort of disrupted in your typical care or what you were expecting, but now you're also displaced into a world that doesn't even, you know, speak your language. And those would have been things that might have been a little bit more comforting when you're trying to process. 

Valerie Hernandez (08:48) 

Yeah, I think there's also, there's cultural differences, right? So you kind of have to get used, like I was trying to warm up to the nurses, trying to warm up to the doctors. I remember complimenting some of the doctors and everybody would just look at me like, what are you doing? Because it's just, it's go, go, go in the public hospital setting. And so, you know, it's hard to feel comfortable and to feel the warm and fuzzy that you want to have with your baby. 

Leah (08:52) Mm. 

Hmm. 

Valerie Hernandez (09:17)

when you're in that kind of environment. 

Leah (09:19) 

I can only imagine. I mean, that's exactly true, right? It should be the especially with expectations that you had. Yeah, and you also mentioned there that you had HELLP syndrome, which affected your blood pressure, correct? And you were pretty sick and you said you had a difficult delivery. Let's add that as a layer to to fear and and and processing and information, what do you think some, was there anything that helped you in trying to balance that or looking back maybe things that if your or your partner is in that condition knowing it just is even more scary, something that we can do to be more proactive in that communication since it does happen quite a lot. 

Valerie Hernandez (10:18) 

So looking back from a communications perspective, let me just stop and explain what my symptoms were and what HELLP syndrome is.  

Medical Doctor 

So in terms of what I was feeling towards, I guess at my 30th week or maybe even 29th week of pregnancy, it was right after a doctor's appointment. So I had already been cleared, everything was good to go. I just started to feel not right, right? Like I was just really tired. 

From time to time I would get a headache. From time to time I would feel nauseous. And when I would express this to the people around me, they would say, you you're pregnant. What do you expect? Like, that's how you're supposed to feel. But my husband was hearing me say it more more often, and I was just like, I've never been pregnant before. But you know what? Pregnancy pretty much sucks because everybody around me, my sister-in-laws, our friends who are pregnant, they were just so joyful. 

The French community, they just love pregnancy. They love babies. So everybody's really embracing them. And I just, I didn't have that same feeling. So I was bringing a lot of like, you know, questioning myself, like why can't I enjoy this? And my husband was hearing some of it. And it's really interesting because at that, the day I gave birth to Reese or the day before, the doctor's office had called and said, you know, we have your appointment schedules for tomorrow, but the doctor can't make it. And my husband got on the phone and says, 

No, no, no, because I was like, okay, let's reschedule Friday. Okay, that sounds great. My husband got on the phone and he says, no, you see her tomorrow. She's not feeling right and she needs to be seen. And thank God I did because I went in the next morning and it's funny because I told the doctor, I'm not feeling right. I have these things. And he said, madam, you're pregnant. What do you expect? And then he started to take my blood pressure. And then he did, he had the little ultrasound thing. 

And he's looking at the baby and he's looking at me and he says, okay, you have high blood pressure. We're gonna take some blood, go home, get a bag. I'm checking into the clinic. Everything's gonna be okay, but let's keep an eye on you. So I left, I came back, you know, two hours later with my bag in hand and his face was completely white. And he said, I'm sending you directly to the emergency room. We have to deliver this baby immediately. And I had no idea, right? 

Like I had, I didn't even believe him actually. But it turned out that I was in liver failure, that I not only had high blood pressure, apparently I had a low platelet count, my placenta was 70 % dead and my son wasn't growing inside of me. And I thought I was doing all the right things, right? I was telling people how I felt, but you have to stay in contact with your doctor or you have to... 

advocate for yourself at the right moment. And thank God my husband did. You know, I was just like, oh, the doctor can't see me, whatever. I didn't think I was that sick, right? So it taught us a good lesson that we carry with us to this day when our children are in different difficult situations or our own health, to trust your instincts and to be a good advocate for yourself and also ask the right questions, right? Like if I should have called and asked the doctor, well, are headaches really that normal? 

Um, you know, is it supposed to be this bad? I just, I didn't know. You know, you don't know what you don't know. 

Leah (13:48) 

This is a, mean, thank you so much for sharing this part of your story. I mean, because it's so true, I mean, for your husband to stand up and say no, and this is the point of our partnerships, right, is to say, when I can't do it, please help me do it. You know, and it's really hard. 

Sometimes a mother can advocate for herself and sometimes she needs her partner to do it. And because it, 

Valerie Hernandez (14:05)

Right. Yes. 

Leah (14:17) you society is telling you, you're fine. You asked people, people you trusted who said, you're fine, but something just didn't feel right. And thankfully you communicated that to him and he said, I trust my wife and no, it's okay. 

Valerie Hernandez (14:19)

Mm-hmm. 

And it's in the parent, I'm sorry to cut you off, but it's in the parents 

that we see in the NICU all the time, where they have this instinct and they have this feeling. And the doctors, you know, they do everything they can, they see things, but sometimes things are out of the ordinary. So it takes, you know, it takes a partner, the parent advocate to stand up and say, no, this doesn't feel right. Just please take a second look. And it can make all the difference for a baby's care. So we see it all the time and we encourage our parents. 

Leah (14:51)

Hmm. 

Valerie Hernandez (14:57)

to do that, have a respectful role in the process. 

Leah (15:04) 

Yeah, yeah, absolutely. And you said something that you've taught me for as long as I've known you. And that's really about you said right there, you don't know what you don't know. Right. And most folks who end up in the NICU don't know much, even the folks that we know who work in the NICU themselves find themselves in the NICU going, I don't know, or I know too much. And it gets really tough to be clear about what I need to be asking and what my role is. And Something you've said, I have our My NICU Baby Book in front of me actually and and there's a whole section on communicating and How to ask those questions like you said be having a respectful communication and Sometimes I feel like you know We don't know how to ask or even what we're supposed to ask and there's a I'm gonna quote it back to you and then you can tell me a little bit more about your thought on it and You say and this is a great question when you're like, I don't know 

Something doesn't feel right. And you literally say, I'm very concerned about this. How worried should I be? And I think that's a valuable question that at least puts our parents. So if you're out there listening, it puts you in the conversation. You say, I'm worried about this. How worried should I be? Or what do I, the other one you've always told me is, what do I need to know about this? So if it's a PDA, I'm very worried about a PDA. What do I need to know about it as a parent? 

Valerie Hernandez (16:31) 

Right, 

Leah (16:32) 

How worried should I be about this? 

Valerie Hernandez (16:32) right, right. I think it's a good time when you hear all these medical terms and you're trying to process them without that medical background. I think asking a deeper question, number one, is a good way to allow you to process what you're hearing and also get the doctor to slow down about what you're telling. A doctor comes into the room with your baby top of mind, but they also have a lot going on outside of that. And sometimes, 

to have your voice in the conversation could slow it down and set a tone that allows you to process at your time and the doctor to give you the time they probably want to give you, but they're just not used to, not used to, they're not thinking about the fact of how this might be new to you and that you don't have the medical background. So part and partial of that is slowing down the conversation by asking deeper questions like, PDA, what exactly does that mean? And then saying, 

Okay, well that sounds concerning. How concerned should I be? And you could say, know, what are percentages or how often do you see this? Like, does this come up in your everyday? And then you could kind of judge for yourself how much you need to be thinking about this in the day-to-day care. So how often are you seeing this in the day? What can I do? I'm sitting next to the baby all day. What can I look for in the baby's care? 

So the doctor wants to answer all these questions, the nurses too, but you have to step up and take control. And it's hard to know what to do because when you don't know, what you don't know. So kind of look for those opportunities to buy more of the doctor's time and to educate yourself and then go off and do more education if you want, if that's your thing. Some people it's not and that's okay. But just buy the time, ask questions at your pace is what I could say there. 

Leah (18:27) 

That's brilliant. Getting a little bit deeper slows us down and that's what we need, especially when we're trying to process under all this stress is we do need a little more time. Yeah. 

Valerie Hernandez (18:37) 

Yeah, and I think 

that you know the doctors coming in the room at this time and you like you know their time is busy so you don't want to take up too much of the time, but they want to give it to you, but you just have to help them get there right? So. 

Leah (18:48) 

Yeah, that's brilliant. 

That's really brilliant. You're absolutely right. Absolutely right. And then when you're talking about asking these questions, right, so then that some folks I know are like, yeah, well, what do do with it? Right? Like, what am I? You said go off and research if you want. And that with all of this information and sometimes you'll hear it if you're in rounds or they come and say a bunch of words and maybe the time isn't right for you to say something. Are there any other tools? 

that you think are helpful to keep track of that information that we get as a baby is making their way through the NICU. 

Valerie Hernandez (19:21)

Yes. 

Yeah, absolutely. I think it's really important to be documenting what kind of information you learn at every conversation that you have with your baby's doctor. And there's a lot of different ways you could do that. Some of our moms choose to just have a notebook with them where they write all their notes. Other moms open the notes tab in their phone. There's books that are tailor made for this. I know ICU Baby has the MyNicUBaby book. 

where there's daily journal entries where you are prompted to write the information that makes sense and even write even more information. You could write not only what the doctor says, but how it made you feel. And the benefit of doing this is because the information changes every day, right? What doctors are saying, all these different subject matter experts or these specialty doctors are coming in and giving you different information. And it's overwhelming. It's really hard. 

So to be able to go back and look at this and see how the stories change, or one day they might come in and tell you something and then the next time they never mention it again. And so by going to your journal or your notepad and or even an app, there's apps that are made for this. You could remember to ask about this on their next visit. And very often times or a lot of times things self resolve. So you could take that off your worry list, right? By having it documented. 

Leah (20:54)

that's such a smart idea because right where we as parents are thinking just about our child and we're thinking okay they were really worried about the baby's belly circumference right so we wrote it down and we kept track of it and but if the next measurement was fine or something else they're not going to come and check on it again right because it's been cleared but if we weren't told we cleared that then it's continuously in our mind as still a problem that's so important that's such valuable 

Valerie Hernandez (21:17)

Right. 

Leah (21:24)

tips like, wow. Wow. Yeah. 

Valerie Hernandez (21:26) 

And I think in my 

situation, I was quite sick after the birth of my son and I was getting information about my own health. And then I was giving him information about his health in different languages. And so, I mean, it's hard to separate it in your head unless you write it down. And even I regret not doing that because my second pregnancy, I wanted to remember things, but it would have already been three or four years since that pregnancy. so I wasn't... 

Leah (21:35) Hmm. 

Valerie Hernandez (21:55)

I wasn't on top of all the details like I was when it was fresh in my head. So I regret not having that documentation to look back at. So it's a good thing to do. 

Leah (22:00)

Hmm. Yeah. 

Yeah, yeah, for sure. I mean, I've moved a little bit more to also doing voice memos to myself too sometimes if, you know, like if I don't want to write like I'll, you know, this is what I'm thinking about this and this is that. And, you know, if you're walking somewhere, you're trying to get a little space or whatever's happening, I've I don't know about you, but I've started to try to let my voice you do a little bit of my of my writing work. So if that's helpful for folks listening, it's another opportunity. Like if you're like, I just can't. 

Valerie Hernandez (22:15)

Hmm. 

Leah (22:36) type or write right now, you can talk. Talk to yourself. This is what they said and this is what I understand. And then you can, you know, it'll read it out for you. That's the beautiful thing of our, of our technology is we needed to do some work for us right now, instead of just listening to our conversations. 

Valerie Hernandez (22:38)

Yeah, Yes. 

Yeah. 

And on that note, sometimes different hospitals have different policies and different doctors have different preferences. But you could ask, take a voice recording of what the doctor says in the rounds that day. And the benefit of that is it gives you a chance to process it afterwards. If your spouse can't be there, your partner can't be there, you could just share the recording with your partner. 

Leah (23:19)

Hmm. 

Valerie Hernandez (23:19) 

And it's easier to do than writing everything down in the moment. So yeah, it's a great tip for not only afterwards, but also in the hospital at the moment of the conversation. 

Leah (23:33) 

Yeah, that's brilliant. Right. And I know even even you and I can sit in a meeting without stress and hear different things. Right. You know, how we see, you know, I thought this was very important and you thought something else was very important. And that's same true to having two heads in those conversations. It's something you're absolutely right. We say, you know, if somebody else can be with you. Go ahead. 

Valerie Hernandez (23:41)

Right. Okay. Right. 

Yeah, but you have to, yeah, but you have to ask the medical 

provider for their permission. You have to ask that medical provider for their permission, right? Can't just record it on their own. 

Leah (24:03) 

Yeah, right, exactly. Yeah, if they can be with you in person, even better. But understandably, getting two parents at the bedside can be really challenging. So yeah, definitely ask, recording or have them call in. That's the other thing too. Sometimes it can just be live, an audio call. So everybody's in real time together to answer questions. That's really great. Yeah. I also think there's... 

something that is, that you've always been very, very wise to is about sort of managing all of the communications, right? So we know that our family and our friends care a lot about us and they want information and very frequently they may not have had an experience in the NICU. 

or it's been a long time, and so they don't really understand the pace of the NICU. They're not really sure how it's going, but they care a lot. And it can sometimes become another task to be, that's what I alluded to before, the PR manager of your situation. And it can add some stress to the situation. 

Valerie Hernandez (25:21)

Yes. 

Leah (25:28) 

We definitely see very well-meaning family members sending messages all day, like, what's going on and what does that mean and let me do some of own research and it can get complicated and it's just really challenging. So I know you said you had some family around. I don't know what that was like for you, but what are some things that would help us in the NICU to communicate better with our family? 

Valerie Hernandez (25:55) 

So this is a real big one that I see with mentoring some of our parents as they talk about how overwhelmed they are with the situation and also communicating with everybody because every time they communicate what happened to them, it's like they're reliving the situation, which sometimes can be really traumatic, like I know it was for me. Every text message that comes in and that you're telling people what happened, that becomes difficult. 

So a good piece of advice for parents is to figure out the way that you want to tell the world what's going on. And so for some of our families who are in the NICU for two, four, six, eight months, it might make a lot of sense for them or even a week, you know, it might make a lot of sense to sit back and ask yourself, how do I want to keep everybody updated on my baby's health and my health? 

And so a good way to do that is number one to first, you know, sit down with your partner and figure out what you want to share and what you don't want to share, because sometimes people don't want to share all the details and that's okay. Maybe you have a small group who you want to let into this world and then there's a different form of reduced communication you want to give to everybody else and that's fine. And I think it alleviates the stress 

of sharing things over and over during a difficult time if you come up with a communications plan. I know for me it was pretty straightforward with my son's birth in France because my husband communicated with the French family as much as he could. I communicated with my American family and we both had our different communication styles. But in some relationships, know, one partner might be the stronger communicator. 

and another partner might not be able to communicate. Their health might not be in the right place, both physical and mental. So coming up with this plan in the beginning allows you to kind of set the boundaries, right? And allows you to take control. I think one thing that NICU tells us is from a parent's seat, there's not a lot of things that you can control, right? You have the doctors making the decisions, the best decisions they can make on the baby's medical care. Sometimes you get to be part of that, but not always. 

Leah (28:15)

Right. 

Valerie Hernandez (28:23) 

The nurses get to decide when you get to hold the baby, when you get to bathe the baby. So communication with the outside world is probably one of the few things that you can have full control over. So kind of take advantage of that, right? And we've seen families do this in different ways. So some families set up a WhatsApp group, right? And they could send out a link to anybody who contacts them. You could send them a link, say, here's where I'm giving baby updates. If you wanna... 

be on this chat, great. There's sites like CaringBridge where, you know, can be very therapeutic because you could do all that documentation we just talked about where you can decide I'm gonna give a weekly update, I'm gonna give, you know, every other day update. And that tool documents everything for you and then pushes it out to everyone. So it takes the stress off of that. Or there's also social media, right? You could create 

private Facebook groups, private Instagram channels, or you could do it publicly. Like if that's your thing, it's therapeutic for you to share every detail. That's great. You're welcome to do that. But take advantage of these tools because it could alleviate the burden of you having to relive that bad news that you just got that day and have to push that out individually to one person or the other. know, people reach out to you because they want to support you. 

They want to feel part of the experience with you because you're part of their, you know, people they love. But setting up the boundaries will allow you to control your mental health so that you could focus on what's right for your baby and your partner and your own mental clarity. 

Leah (30:11) 

Yeah, and I think something that I'm hearing when you're saying that is instead of their love and care and support becoming a burden, it just continues to be love and care and support. Right? If there's like, this is, I'm going to give you and then all you have to get back is, I love you so much. I'm here for you anytime. I'm bringing you dinner tomorrow. Right? Whatever those things are, instead of the re-traumatization of going through it all the time. Yeah. Yeah. 

Valerie Hernandez (30:22) Great. 

Right. Right. 

It's hard and it's a lot. 

And I think there's a part of it too. If you put yourself on a cadence, I think sometimes it could allow you to reflect, you know, not only on that medical news, but you could also think about, you know, what are the beautiful things that are happening in this moment? Like you might be learning about the kind of personality your baby has, right? I remember when I had my son and they kind of rolled me into the NICU and they had 

Leah (30:40) Yeah. 

Valerie Hernandez (31:07) you the incubator set up the, you know, the nursery, if you will. And you saw all the babies, all these little babies, and they were all so calm. But there was one baby in the back that was kicking and moving around. And my husband rolled me in because I was still pretty sick. you know, I think it was three or four days. I hadn't even met my son yet. And I said to myself, I bet you that's my kid, you know, the one all the way in the back that's. 

kicking with all these peaceful babies. And sure enough, that's where he took me, right? I was next to Reese and he was that kicking baby. And I started to learn his personality, right? And in my head, I was like, man, I'm in for it, right? Like this kid is already giving it to me. And that's who he is today. And you have to embrace that, right? You have to get to know your baby for who they are right now. I've had one mother 

who says, they don't like it when you put the little beanie hat on. My daughter doesn't like that. And she's able to tell the nurse. that's an update in itself, right? Baby Gina doesn't like the little bonnets as much as we put it on. And people want to hear those things because this is now a new family member. This is now a new friend. so you're... 

Leah (32:24) Yeah. 

Valerie Hernandez (32:29) 

As much as you're in the day to day of the medical, share those beautiful moments too. Share about your roommate. You might have a roommate and they're becoming besties and put that in there. And I promise you, as much as this situation feels difficult, you'll go back and want to cherish those moments at one point in time. And you'll want to go back and remember that roommate's name and stay in contact with that person maybe eventually. 

Family updates don't always have to be the medical news, even though we live and breathe by them. Look for those beautiful moments too. 

Leah (33:08) 

That's so, you just said it's beautiful. Beautiful and it's so true. And by marking them in your, in the, you know, in that update, you're also reaffirming for yourself who your baby is and look at that wonderful time that you were able to advocate for your baby and say, before you put that new line in, let me, he prefers if I hold him at his head and his feet while this is happening or, you know, can we wait until this Brady's 

Valerie Hernandez (33:11) Mm. 

Leah (33:37) you this is happening, you're learning to communicate with your baby and for your baby. And that's, it really affirms it. I mean, it's, that's really beautiful. And I think it humanizes the experience too, because you are, like you said, this is all medical, but this is your family and these are your memories and they're beautiful. gosh, I love that. I love that so much. 

Valerie Hernandez (33:43) 

Yes, it's really. 

Yes.

Leah (34:06) 

I think you mentioned in there about like folks who really want to help. What are some guides? think it's hard to, one of more things, you don't know what you don't know. You don't know you're going to be in this situation. You don't know, even know sometimes what you need because your body and your brain is telling you we are in a fight. It's not thinking about the next thing. What are some things that we could think about at that people who want to help and we want to be there because you deserve help, you deserve the care, you deserve. 

the love, what are some things that we could offer as ideas for families to give to caring people? 

Valerie Hernandez (34:44) 

I think it could vary for a lot of people. I think you need to really sit down and ask yourself, what would bring you a little spark of joy or a smile that day? And then not to be afraid to reach out to that person, to ask them for that. And so maybe that would be going home and having a warm meal because every night that week you put in a microwave pre-made dinner. 

Leah (34:57) Yeah. 

Valerie Hernandez (35:13) and you just want something fresh and warm or a good salad, maybe you just want to get out of a NICU and not think about it for 45 minutes. And so you reach out to the friend and say, hey, can you meet me for lunch that day? Maybe it's that you're in the NICU, you don't want to leave, and that's fine, but you would love to have some slippers because it's cold. 

Leah (35:13) Mm-hmm. 

Mmm. 

Valerie Hernandez (35:36) 

And maybe that's something that you could ask, you know, a family member or friend to do. And people want to help. They just don't know how, right? Especially when you're not at home. They're like, should I even bring a meal? That person's always at the hospital. Or can I bring food to the hospital? Is that allowed? People don't know unless you tell them. So look, it doesn't feel like there's any spark of joy that you could have, but try to dig down and figure out what it is. 

Leah (35:45) Yeah. 

Valerie Hernandez (36:05) and don't be afraid to relay that. 

Leah (36:09) love that you're saying that spark of joy. It's something that a previous guest, Morgan had said, you know, you wouldn't deny your baby food or rest or care or joy. So don't deny yourself that either, you know, you are strong and you are tough and you are going to get through this and you can pull your bootstraps up, but you don't have to write and you can find those moments of joy with just a simple ask. Yeah. 

Valerie Hernandez (36:25) Yeah. 

Yeah. 

Yeah, 

and I think we go into this fight or flight mode where our needs just completely suck down. I know this happens to me as a mother when my children are not in a good place. It's not about me, right? It's not about me at all. And that's the worst thing that you could do. And it's terrible because I mean, I do this with my parents that I mentor and I tell them all the time. And recently we had a 

Leah (36:41) Mm-hmm. 

Yeah. 

Valerie Hernandez (37:05) 

My son was in an accident and he was in the hospital for a few days and I went a full day without eating. And the nurse was like, mommy, what are you doing? And I was like, the worst is I know this. And I tell my parents all the time and I got really dizzy and I had to sit down and she had to bring me one of those little juices. And I was like, I'm, what's wrong with me? Like, I know this and I'm still making the mistake because I wasn't hungry. Like I wasn't hungry. 

Leah (37:16) Yeah. 

Yeah. 

Valerie Hernandez (37:33) 

It was about my child and getting him better and not about me at all. And the worst is our parents need to, our moms need to recover, right? They've been through something difficult and they're not taking care of their bodies. And we see it all the time. And it's so easy to do. It's so easy to do. 

Leah (37:35) 

Mm-hmm. 

Yeah. Yeah. 

Yeah, I think it's, I mean, I'm grateful for that nurse who said, hey, what's going on? Let's get you something. Let me get you one of those little tiny juices. They too seem to solve a lot of problems. They do, those juices do seem to solve a lot of problems. 

Valerie Hernandez (37:59) 

I'm embarrassed to say it. And crackers, right? 

It was like the peanut butter crackers or something gross. But it worked. It worked. 

Leah (38:11) Yeah, yeah. 

You know, and that's something I know I always say, and also, again, I love that you're pointing out that we are users of our own wisdom, right? Because it's a practice. We're not perfect. None of us are. We'll never get it right. Is set an alarm. Set an alarm for every hour. Set an alarm to take a drink of water. Set alarm to... 

Valerie Hernandez (38:30) yeah. Yeah. 

Leah (38:35) especially if you're in a place where you're wearing a mask and everything feels moist and you don't even know if you're hungry or thirsty or tired, set an alarm to eat. And I love to use the adage of if your babies, if you have to pump or your baby's eating, you have to eat. You have to do the same thing. This is, these are your alarms. These are your reminders because you're totally right when you're in that fight or flight situation. When you're running away from a tiger, you don't stop to have a steak. 

Valerie Hernandez (38:50) Yes, true. Yes. 

No, 

Leah (39:03) 

You know, you don't sit down and have a bowl of pasta. 

Valerie Hernandez (39:03) no, no, no. And the NICU is a surreal world where time stands still. And when you're recovering and you're in this mom in this difficult place, your body doesn't give you the normal cues. Like you have to remind yourself in a way that you never had to experience before. I mean, it was the first time for me. And so... 

Leah (39:28) Right. 

Valerie Hernandez (39:29) you know, that's why there's things like this podcast and different advocacy groups that are there to remind you. Because your mom doesn't even know to remind you because she's so focused on the baby too. And your partner doesn't know to remind you. Nobody, everybody's focused on the baby. And then sadly, you know, our healthcare team, their expertise is on babies. It's not on the mother. So. 

Leah (39:38) Yeah. 

Yeah. 

Valerie Hernandez (39:57) 

That's a whole different thing. We need to do more to think about the parent's perspective and how they could be their best selves so the baby could be their best selves too. But nobody's there to remind you. You have to remind yourself. 

Leah (40:10) 

Yeah, yeah. Yeah, and we want you to feel the best you can. I mean, that's our one of our big missions, right, is, you know, to feel comfortable and confident at the bedside and just sticking to food like those snicker commercials are not a lie. If you're hungry, you're you're not yourself. And so, Yeah, nobody needs a Roseanne bar at the bedside. Anyway, that's yeah, I think that's really, really crucial. 

Valerie Hernandez (40:24) Yes. 

Yes. And you get hangry. Yeah. No. 

Leah (40:40) 

Yeah, I mean, you've just given us so many incredible words of wisdom and pearls of wisdom and Nikki Parent Pearls and all of the words. I'm just tremendously grateful to have you in my life and to know you and to know that you are supporting our families. you've just been an incredible source of stability and hope. 

and love and encouragement for hundreds of families and thousands. so I'm just so glad that you're here to share some of that with the wider world. Can you describe what hope means to you?

Valerie Hernandez (41:26) 

Yeah, so hope is a big word for us, right? At ICU Baby. And it's something I think about a lot. And I think that, you know, for me, hope is trust, right? And in the NICU, that means, you know, trusting the process. You know, there is no better time in the history of this world to have a premature baby. We have the most advanced medical care with 

Leah (41:29) Yeah. 

Mm-hmm. 

Valerie Hernandez (41:55) 

thanks to great medical providers and great researchers. And there's never been a better time to have the best chance of survival of being a premature baby. no outcome is guaranteed, but you have to trust this process that this is the best that you can give your baby. I think you also have to trust yourself to know that you're doing everything in your power 

to make sure your baby's getting the best possible care for the best outcome. And so right even now by listening to this podcast, you are in this group of parents who's turning every rock to make sure you're doing what's best for your baby. And so trust yourself, trust the process and also hope is, know, trusting your spiritual provider to know that 

What's going to come is what's meant to come and that you're going to have the strength to push through it. So I think that's what hope means to me. It means trust. 

Leah (43:03) 

It's profound. Thank you for sharing that. And if you, you you do get to talk to a NICU family who's sitting at their baby's bedside here today, but if we were to talk to the wider world right now, so all of you out there who are, who are NICU families or were NICU families and, you know, because we're continuing, you're always a NICU family. Once a NICU family, always a NICU family. Do you have any, anything else that you would want to share? Any other words of wisdom that we didn't talk about today that you'd want to leave somebody with? 

Valerie Hernandez (43:34) 

Yeah, I think that the NICU can bring a lot of different feelings. I think one that we don't talk about enough, that's, because there's a lot of advice you could give, right? But one we don't talk about enough is the mom guilt, and it's something that I personally felt a lot. I talked about my experience, and I have to let you know that I questioned myself. To know that in help syndrome, I said that 

Leah (43:45) 

Mm-hmm.

Valerie Hernandez (44:02) 

70 % of my placenta was dead and my baby was only getting 30 % of the blood flow that he needed to grow. And I didn't even know that. And so I started to question myself a lot. Like if I can't figure out what's going on with my own body, how am I gonna take care of this baby who's premature and know what's going on in his body to do what's best by him? So. 

Leah (44:23) Hmm. 

Valerie Hernandez (44:29) 

I started to ask myself a lot of questions. I started to feel guilt and shame for having this baby early. And I didn't talk about it. I felt it, but I didn't have the words to express it. And I think there's a lot of data out there that shows us how fragile the mental health of our parents are. 

And we see it all the time, right? I see it in the parents that I mentor. And there's help out there. 

Leah (44:43) Yeah. 

Valerie Hernandez (44:58) doesn't have to be this difficult, whether it's guilt or sadness. Talking to somebody just takes this burden off. They're not going to give you answers, but it's going to allow you to process your feelings in a way that you could free up this burden so that you could make room to care for your baby and your own heart at the same time so that you could have a better experience and have the strength to tackle whatever is coming your way. 

And so I think that's a big gap in our medical care. Like I said earlier, everybody's focused around the baby as they should be. But there's so much data out there that's showing us that the parents are just as fragile and the parents are a vital part of this process. And nobody's there to fill that gap. There's so many parents who just need to talk. There's no answers, but just talking it through gives a big sigh. 

and we see it with our family meetings all the time, that just being able to say what's going on, you just breathe. And then once you breathe, you could get through that next moment. And so I wish I was a dress more in the hospital, but my best advice is that you could take charge, right? There's few things you could take charge. This is something else that you could take charge of, is your own mental health. 

Leah (46:21) Yeah. 

Yeah, I love that what you said about, you know, giving yourself a place to put that, you know, mom guilt, the anxiety, the sadness, the worry, the rumination, so that you can make space for what you want to put your time and attention on. mean, that's making that space is beautiful because that's why we're worried and that's why we're guilty is because we want to do the right thing and we want to have and I love that. 

Valerie Hernandez (46:41) Yes. Yeah. 

Leah (46:50) that analogy or that explanation that's really beautiful. 

Thank you so much, Valerie. This is so insightful and so hopeful and inspiring and I'm so grateful. if you are out there listening or watching us on our YouTube and you're sitting at your baby's bedside or driving back and forth to the NICU or maybe pumping or pacing the floors at night trying to get back to sleep, Valerie and I want you to know that you are not alone. 

Valerie Hernandez (46:58) Thank you. 

Leah (47:27) that we are here with you and we look forward to sitting with you again soon. Take gentle care.