Ep 275: What EVERYONE Who’s Pregnant Needs To Know About The NICU with Mary Farrelly, RN

Dr. Nicole (00:00): This episode may be about the NICU, but it is really for any and every person who's having a baby. Welcome to the All About pregnancy and birth podcast. If you're having a baby in the hospital, you are giving birth in a system that too often takes away power from women over what happens in their own bodies. I'm Dr. Nicole Calloway Rankins, a practicing board certified OB GYN, who's had the privilege of helping well over a thousand babies into this world. I've been a doctor for over 20 years, and I'm here to help you take back your power, advocate for yourself, and have the beautiful pregnancy and birth that you deserve. This podcast is for educational purposes only, and it's not a substitute for medical advice. Check out the full disclaimer at drnicolerankins.com/disclaimer. Now, let's get to it. Hello there. Welcome to another episode of the podcast.

(00:58): This is episode number 275. Whether this is your first time listening or you have been here before, I am so glad you're spending some time with me today. In today's episode, we have Mary Farley. Mary is a certified NICU nurse, trained doula, nurse educator, and mom of two little ones. She has over 10 years of experience working in level four NICUs with the highest level of acuity patients. She founded the NICU translator with the goal of making the transition from the NICU to home as seamless and positive as possible in order to create a safe environment in which babies and their families can thrive through one-to-one virtual NICU doula sessions, engaged online communities and evidence-based education for both families and other doulas. Mary is committed to empowering families to create better and less traumatic NICU experiences. I'm really excited to have Mary on the podcast because I know from personal experience that it's NICU nurses who are really at your side when you have a baby in the nicu.

(02:11): I have always called NICU Nurses angels, and the reason I said in the beginning that everyone needs to hear this information is because it's actually way more common than you think that a baby needs to be in the nicu, and it's way more full term babies that have to go to the NICU than you realize too. You're going to learn those details in the episode. Now, please know that this episode is not about fear. Mary's info is about being prepared just in case, because the possibility of your baby going to the NICU isn't something that we really talk about in those prenatal appointments. And honestly, it really only takes a little time and information for you not to be completely caught off guard if that does happen that your baby has to go to the nicu. So in this episode, you're going to learn some basic information about the nicu, like what is the nicu?

(03:05): What are the different levels of the nicu? There are actually four. You're going to learn that information about how many babies go to the nicu, the most common reasons why babies go to the nicu. You're going to learn some things to consider for your birth plan about the nicu, and much, much more. Now, I do have a quick favor to ask. We like to learn more about who's listening to the podcast. So if you can hop on over to drnicolerankins.com/survey, I would love for you to fill that out and let me know about you as a listener. It's a super short survey, only takes a couple minutes, but it just helps us to learn more about you so we can give you the best, most relevant content possible. Okay, let's get into the conversation with Mary. Thank you so much, Mary, for agreeing to come onto the podcast. I think it's a small world that we actually live in the same city and didn't know it until we connected. I love

Mary (04:08): That so much.

Dr. Nicole (04:09): Yes, me too. Me too. So why don't we start off by having you tell us a bit about yourself and your work and your family?

Mary (04:15): Sure. So my name is Mary Farley. I am a NICU nurse. I've been a NICU nurse in level four NICUs for just over a decade now. I'm also a trained doula and I'm the founder of a company called the NICU Translator, where I focus on helping bridge the gap between the NICU and home for families. I'm also a mom. I have a five-year-old and my 2-year-old just turned two yesterday. So a brand new newly minted 2-year-old.

Dr. Nicole (04:40): Yeah, I love it.

Mary (04:41): Yeah, that's myself in a nutshell.

Dr. Nicole (04:44): I got it. I got it. All right. So why don't we start off, one of the things that's been really important to me is there's a lot of people on social media saying a whole lot of stuff, and I'm not discount people's personal experiences because that is important, but I really like my audience to know what training that my guests have had in order to do the work that they do. And then because I think regular training and staying up on top of things is important. So why don't you tell us a bit about your training to become a NICU nurse and even being a doula?

Mary (05:16): Sure. So my past in nursing was a little bit roundabout. I have a bachelor's degree. I was pre-law and I minored in Italian with my first study. I don't use most of it now. Every once in a while it pops through, but I went back to school initially to become a nurse midwife. That was my passion was I wanted to help support women in the birthing space. So I went back to an accelerated second degree program. I got my bachelor's of science in nursing, and during that time I did a training, my initial training to become a doula. And I did that in a course through a program here where we lived, and I then served as a volunteer doula for low income and teen moms throughout my nursing career. In the early stages, it was really fulfilling, very eyeopening. And then I initially wanted to be a labor and delivery nurse, but the hospital that I worked at only had a nicu, and I was like, I guess I'll do it for a year. So I dove right in and I never looked back. That was 10 plus years ago.

Dr. Nicole (06:16): There you go.

Mary (06:17): Yeah. So since then I've gotten my NICU certification, which is a board certified exam, which solidifies my experience working in level four NICUs with a wide range of patient populations. And then I have redone my doula training recently. I also have experience with supporting moms with perinatal mental health and also with breastfeeding support. So I also love, I'm passionate about keeping everything up to date. I have served as my nurse educator for my hospital for several years and helped create curriculum to help transition new nurses into the NICU space too. So I am all about teaching.

Dr. Nicole (06:53): Yes, I mean, clearly. Clearly. And I think that's so important. Your passion for it just comes through in your voice. I can tell you're very committed to it. And it's also interesting how things find you. Sometimes. You ended up in the NICU and now here you are.

Mary (07:07): It sure does. It's fun looking back on your choices that you make because you can see it. You can see how it all aligned, but in the thick of it, you're like, what am I doing?

Dr. Nicole (07:15): What in the world? Yes, exactly. That's how I ended up being an OB hospitalist actually. But that's a story for, it just kind of happened now. Here I am. Here. It's all right. So let's start off with just some background information about the nicu, because in doing research for our conversation, I loved how the information that you shared is about making sure that everybody is informed about the possibilities of the nicu, even if it is not likely, but it's more common than I think people realize. So we're going to get into that and things that people can do to be prepared. But let's start off with some basic information like what is a nicu?

Mary (07:52): Right? It's a great place to start. So the NICU stands for Neonatal Intensive Care Unit. Sometimes you'll see it as newborn intensive care unit, and it's a place where babies that are not quite ready to go home spend time transitioning. So there's so many different reasons that a baby could need additional medical care after delivery, but the NICU is where they would go to have that extra medical support and specialized care to get them to a point where they can then transition to home.

Dr. Nicole (08:21): Gotcha, gotcha. Now, you talked about you work in a level four NICU certified in a level four nicu. So I'm guessing there's a three, two, and one under that. So what are the different NICU levels? What does that mean?

Mary (08:33): Sure. I think that this topic is one of the most important one, if you can take anything away, is understanding the differences in levels of care of at nicu. So level one is the very basic, typically it's called a level one nicu, but people might know it as a well baby nursery. So if your baby is born and needing a little bit of extra observation, they would go be seen by the specialists in that space. But typically, level one NICUs or nurseries cannot do anything to intervene really to help the baby grow or be supported. So if a baby's born at a level one, they would then need to transition to a different level of care. Level two is also known as a special care nursery. So those typically are babies that are born 32 weeks or older and need really just support with transitioning to feeding and growing. So they might need some feeding tube support temporarily. They might need a little help staying warm and an incubator, but they don't really have a lot of complex needs. Then a level three is your typical NICU that you might think of. They're more common at a bigger hospital setting, and they typically can take care of most babies, even small preemies through term infants. They can do different levels of breathing support, sometimes some basic surgeries. But again, if there's certain things that your baby might need that NICU can't provide, then they would be transferred to a level four nicu, which is also known as a regional nicu.

(10:06): They're typically, depending on where you live in the country, there's sometimes one to three in each state. There's a few states that don't have any level four NICUs. So that's something to think about too. But the big difference with the level four is that everything that your baby might need is available in that hospital. So there's a pediatric cardiologist, a pediatric nephrologist, they can do everything down to the idio, bittiest babies, the bigger babies with complex surgeries and medical needs. That's kind of the range of care. And depending on what each baby needs, they may go up care or eventually, sometimes babies will move back down care also depending on where the family lives.

Dr. Nicole (10:46): Gotcha. Gotcha. Thank you. I think most people don't understand that not every NICU is different, and not every NICU can take babies that have all issues. Sometimes you may need to go to a different hospital or facility. So does every hospital with a labor and delivery necessarily have a nicu?

Mary (11:03): No, they don't. The smaller, more community-based or rural hospitals will typically have that level one support, meaning that if your baby comes out and needs support, they can do the initial resuscitation steps, but that baby would always need to be transferred to a different level of care for continued NICU support.

Dr. Nicole (11:23): Okay. Yeah, I think that's another thing that people don't necessarily always understand that a NICU may not be readily available. And you may talk about this later in terms of planning and how you think about things for your pregnancy and what hospital you choose. Absolutely. But not every hospital is going to have a nicu. Now, how many babies are going to need NICU support?

Mary (11:44): This is another one that people are often surprised by because I feel like I hear people saying like, oh, it would never happen to me. It's super uncommon, but it's one in 10 babies born in the United States specifically each year will need a NICU stay, which is 400,000 babies every year, one

Dr. Nicole (12:02): In

Mary (12:02): 10 just in the us, one in 10. So if you're in a prenatal class with 20 people, statistically two people will likely have the NICU as part of their birth story, which is just really eyeopening.

Dr. Nicole (12:12): It is very eyeopening

Mary (12:14): And kind of changes the frame for how we think about the NICU in a prenatal space.

Dr. Nicole (12:20): Definitely. And when thinking about it being on the other side of being a OB GYN, definitely it is more common than you think, or sometimes a baby who you wouldn't think need to go ends up going to the nicu, and it's not something that we talk about much. So I'm sure we're going to get into that as well. Some things to think about prenatally when thinking about NICU and NICU experience. So what percentage of babies then are full term who are in the nicu? That's

Mary (12:49): Another one of my NICU myths that I hear all the time. A lot of people think of the NICU as what they see in Grey's Anatomy, like a line of itty bitty babies and an isolette, but it's just shy of half of the babies in the NICU are term. It's about like 47 ish percent, which is

Dr. Nicole (13:06): Crazy.

Mary (13:07): It is. It really is because, and it depends on the region that you're at and the type of nicu, but overall, it's a lot more term babies than people think. So a lot of people are like, oh, I'm 36 weeks. I'm not going to have a preemie. I don't need to think about the nicu. But that's just not supported with the data. No one's immune from the NICU being part of your birth experience.

Dr. Nicole (13:34): Yes, yes. So then what is the reason, what are the most common reasons for babies needing to be in the nicu?

Mary (13:41): Sure. So the most common one is prematurity. That is more than half of the babies, and that's babies typically born as young as 22 weeks, and then up to typically around 36 weeks after that, you're considered more of a late preterm. But then other more common diagnosis sometimes is respiratory distress, which people sometimes think about with preemies, but term infants when you come out, when you're in the birthing person's belly, everything's done for you. And to think that they come out and it can just be light bulb on and everything working when it does work, it's kind of a miracle when you think about it, but sometimes babies just need help transitioning to life on land. So that would be respiratory distress. Jaundice is another common reason babies have higher bilirubin and might need some more intensive phototherapy to help have those levels go down. Hypoglycemia, which is low blood sugar, especially for infants that are born to someone who had type one, type two or gestational diabetes might need support with some IV therapy. Sometimes babies have congenital issues that may have been known prenatally that would need either monitoring or surgery. And then sometimes just babies are a little bit smaller or they just have a need for extra monitoring to help with feeding or growing or temperature regulation. And then the other one is infection. So sometimes there's a risk. Babies are born basically with very little immunity or immune system support. So sometimes things that would be maybe more of a light illness for a bigger baby is something that a NICU baby would need extra support with. So those are some of the bigger ones

(15:24): That come up more frequently in the nicu.

Dr. Nicole (15:26): So a couple things just to dig into that a little bit more. The 22 weeks, can we just talk about that for a minute? I know that that has changed over time and it's not consistent

Mary (15:36): Everywhere. Sure isn't.

Dr. Nicole (15:40): Just to touch on it for a second, what are you seeing in terms of babies who are getting, because we did not use to offer NICU support for babies who were born at 22 weeks. What are you seeing about how that's changing?

Mary (15:52): It's really interesting because I've been in the NICU space for over 10 years now, and really the ability to offer care to less than 23 weeks maybe has been the last three-ish years or so that it's becoming a little bit more widespread available for. Before then there was just a few NICUs around the country. It's definitely something to think about. If you are ever faced with that type of decision, you really want to know the statistics that are related to your specific pregnancy, your background, anything else that's going on. Because we have had some 22 weekers that are just success stories. But it is a very fragile baby, and it is a complicated decision for parents to work through and for medical providers to give care to. But the advances are incredible. Even in the past year or so, the collaboration between NICUs across the

(16:49): Country

(16:50): Is also really, really impressive, especially for this specific, we call them nano preemies kind of population. Those 22 to 23 ish weekers, they're very unique compared to all the other babies that we care for. Definitely. But you're right, it's not everywhere does not offer that. So if that is something to think about too, if you're someone who is higher risk for preterm delivery to know who in your area would even offer resuscitation if that's something that your family desires.

Dr. Nicole (17:23): Yeah, not everywhere. And then the other thing I'm curious about, and this obviously isn't research or anything, we have kind of changed some of our guidelines in terms of we're inducing people a little earlier in the term period for things like hypertension. And so I see more 37 week inductions. Have you seen some of these term babies, but they're just maybe not quite ready yet?

Mary (17:50): Yes. They're like the great pretenders we kind of call them. They come out looking like a term infant. They look like a term infant, but their insides aren't always quite fully turned on yet. So sometimes a lot of respiratory distress, sometimes they'll have those low blood sugars, even if the mother is not diabetic. Just turning on all systems takes a little bit longer. Or feeding also can sometimes be a little lingering because typically they have the will, but they don't always have the stamina to maintain at that same level. Gotcha.

Dr. Nicole (18:30): Gotcha. And that's always a discussion about the risk and benefits. I don't want anybody to hear this saying, you shouldn't be induced because your baby might go to the nicu. But what I think it is important and what I think we don't always do a good enough job of saying is there is a chance that your baby may go to the NICU and what that may look like.

Mary (18:47): Yes.

Dr. Nicole (18:48): And speaking of going to the nicu, how long do babies on average stay in the nicu?

Mary (18:52): That is another great question. Again, depends on the different levels of care, but the average is about 20 days for a NICU stay. But that takes into consideration those babies that are there for four to 12 hours. And then I've celebrated first birthdays in the NICU before, so there's a huge range, but the average is about 20 days, which is an interesting number.

Dr. Nicole (19:14): It is. And that was, I remember when our daughter was in the nicu, she had daughter latricia, so we knew she was going. And then on top of that, she was born eight weeks early. But when we saw the family celebrating the baby's first birthday in the nicu, that's just like, oh my gosh, that's just really hard. Not that that's common, but it does happen.

Mary (19:34): It does. And a lot of those are those early preterm infants or really medically complex kiddos that just the becomes their

Dr. Nicole (19:44): Home. It

Mary (19:44): Really does.

Dr. Nicole (19:45): Yeah, it does. It does. But for term babies, it could be as short as a few hours or a couple days even.

Mary (19:52): Yep. On average, actually, I should get the statistic on that based on gestational age. But just anecdotally, I feel like the term kiddos are there typically an out, unless they're complex and less than, really less than 10 days or less on average. It depends on their needs,

Dr. Nicole (20:11): But it's 10 days or less. And we say that and it's like, oh, that's not that long. But it's a long time potentially when you have a new baby and you're expecting the baby to come home with you and all of those kinds of things.

Mary (20:20): It changes the whole narrative and the whole dynamic and really just can set the tone for transition to parenthood that's just a little bit more complicated than how someone was envisioning it.

Dr. Nicole (20:31): Yeah, yeah. So most NICU admissions I would expect, or I would say are probably unanticipated or are they expected or how does that fall?

Mary (20:42): Most are unexpected, and they tend to happen quickly too. So it might be a preterm delivery that, okay, now we're going, this baby's coming today. Or it's a term infant where things may have been kind of stable and then all of a sudden either a medical test comes back or they're showing symptoms and they're telling us that they need extra support. So most of the time it is not planned for those that are, that have a prenatal diagnosis typically, or maybe had a preemie before and are higher risk too. So there's a little bit of a benefit to that because hopefully if you are someone who knows that it's likely in your story, you'll have the opportunity to connect with the NICU that your baby will be going to maybe do a tour of it, meet some faces. So it's not so overwhelming when it is a game on and the baby's admitted in.

Dr. Nicole (21:34): Yes, definitely. Definitely. Okay. So let's transition to give people some things that everybody needs to know about the possibility of having a NICU baby or a NICU planning, as you say. So what do you mean by NICU planning and what are some things you recommend for families regarding NICU planning?

Mary (21:53): Sure. So going back to that unexpected thing, what I often see is families with a NICU stay coming into me on that very first day with the baby being admitted and they're just shellshocked, they're overwhelmed, they're very scared, and it's this kind of chaotic feeling because maybe, again, they didn't think about it. No one talked about the nicu. They maybe don't even know what the NICU stands for. And it seems incredibly intimidating.

(22:21): But

(22:21): What I love is that in the past decade or so in the prenatal space, people are really doing their due diligence and learning about birth and learning about what their preferences are

(22:30): And

(22:30): Being able to make informed. And my goal is to allow you to build those same skills, but with a titch of NICU in there too.

Dr. Nicole (22:38): Got it. Got

Mary (22:39): It. So thinking about a couple questions that can be really helpful to just guide your decisions if the NICU is part of the story. So instead of it being like, oh, what's happening? Okay, we talked about this. This is what I would like to have done. So the big thing that I suggest, and I have a whole NICU birth plan template that I created that anyone can have because I want it out in the world for everyone. So I'll share that with you all. But some of the big questions are related to the levels of care. So what are the NICU in my area? What are their levels of care

(23:17): And

(23:18): What is their transfer pattern?

(23:20): So

(23:20): If I'm going to deliver at this hospital and it has a level two, where would they go if they needed extra care? Or say, I go into labor at 31

(23:31): Weeks,

(23:32): What nicu, even if I wanted to deliver here, where do I go to deliver? Because what is shocking to families is that oftentimes they're physically separated from their infant, one is at one facility and then they're at another postpartum, and that's never ideal. I'd rather have them, everybody together.

Dr. Nicole (23:50): Absolutely.

Mary (23:51): So that's just something to just know where, who is who and what in your area and where things would transfer, especially if you don't live near a level four, where is that level four? Just know just in your back pocket and hope you never need it. And then another thing to think about is if the NICU were part of your saying, you did need to be separated, how do you want to do that? Who stays with you? Who goes with baby? And then how do you want to be communicated with who is going to be your point person for getting the information back to you, whether it be a doula or your partner or your support person. That also happens often we'll be like, okay, we're ready to take the baby now to the nicu. And everyone's like deer in head legs. Who goes where? Who goes what? So if you just have that in the back of your head, then it just feels a little bit less chaotic. So those are two very quick things to think about. It can take a few seconds. The birth plan has a few more questions to go through and things to think about, and then you can think about it once, because my biggest thing is I don't want to fear monger.

(24:55): I don't want it to be like, oh gosh, now I'm thinking about the NICU all the time. I want it to be from a place of empowerment. I made these choices. This is what I hope that fits with my family. The other thing is feeding preferences, whether or not if breastfeeding is part of your journey, and I think we'll talk a little bit about that, but how to connect that in. So I don't ever want anyone to be overwhelmed by the nicu. I want it to be like, okay, I got this. This is going to be hard, but we can do it.

Dr. Nicole (25:24): Yeah. And this is definitely a curve ball that we don't talk about. I think we talk about the curve ball potentially of C-section, but we don't talk about this potential curve ball of the nicu. So this is really important. So what are some things that you wish, and we may have talked about 'em already, but the things that you really wish, two or three things that everyone should know about the nicu. If you are pregnant, you need to know it.

Mary (25:47): You need to know this one. The biggest one that besides the levels of care and where do you go? The second one is that even if you are in the nicu, you are still a parent. You are still the boss, you are still the medical decision maker for your baby.

(26:04): How this

(26:05): And that. It doesn't just have to happen to you. You have a voice. You still know your baby best. You are the expert in your baby's care. So that I think is a frame that doesn't exist in a whole lot of NICUs or we try to do it, but it's not really quite implemented as much. So I would love to have that in everybody's back of the head that I understand the basics of the NICU and enough to be able to speak about it. And on that flip side is kind of having a general gist maybe of some policies or basic equipment and diagnoses would be really helpful to have a very light frame of reference. So what are those top things, then the respiratory distress and

(26:52): Jaundice,

(26:53): And then what are some basic equipment that might come in place and how might visitation play into that? So my goal is to really have continue that family unit even in the NICU space.

Dr. Nicole (27:04): Right. Which is how it should be,

Mary (27:06): Right?

Dr. Nicole (27:06): Absolutely. Yeah, definitely. How it should be. So typical. What does it look like, say when unexpectedly your baby has to go to the nicu, when can you expect to start seeing, be able to see your baby in the nicu? And then what will a typical day look like in the nicu?

Mary (27:27): Sure. So most, as I kind of alluded to before, there's sometimes some visitation policies that each NICU have that will be different, but most of the time parents specifically or the two care partners can visit 24 7. So if you wake up in the middle of the night and you want to see your baby, they're there. But most of the time, most NICU's have a care time schedule, which involves clustering cares. So every three to four hours, the NICU nurse will partner with the family and go in and do hands-on cares, which would be temperature, diaper changes, feeding. That's a great time to connect and bond and skin to skin with a baby. And then we offer those really nice periods of uninterrupted rest because that's where healing and growing is. That's where the magic of the healing processes. And it can be sleeping skin to skin on a parent's chest, or it can be, if a baby's premature, you might see them in an isolette with the dim lighting and maybe a cover over the top. And the idea with that is to really recreate as much as we can, the womb basically, and the safety and the containment and the sensations that those babies find very comforting and are very positive for their neurodevelopmental outcomes.

(28:44): So there's a lot of, there's these windows of intensity and care times, and then there's a lot of downtime in the cute too. And for a lot of families that is often kind of a little bit, where do I go? What do I do? For a lot of times that's spent pumping, but there's so many other things that you can do to continue to connect with a baby. But a lot of it is this kind of hurry up and wait,

Dr. Nicole (29:11): Feeling

Mary (29:12): A little bit of a timestamp still. I feel like when you're in the nicu, maybe

Dr. Nicole (29:17): It doesn't deep,

Mary (29:18): Don't know whether it's day or night or what the weather is like outside. You're just there with your baby. But there's also often there's still beeping and some interruptions. It's still kind of a hospital setting as much as we try to keep it as homelike as we possibly can.

Dr. Nicole (29:33): Yeah, yeah. So then how involved, I guess, should parents, I don't know if should is the right or can they be, what can they expect in terms of how involved to be in their baby's care while in the nicu?

Mary (29:49): So I feel like a lot of times the NICU can be a little bit of a learning curve because you're trying to figure out the skills to care for your baby within this setting. They may have some leads on them, they may have an iv, they may have other different things that just make them a little bit intimidating for families. But ultimately, I, as the NICU nurse, am there to provide medical care, but the parents are there to provide that supportive physical touch and bonding and connection that typical baby, those other needs that babies have. That is the gift of the parent. So

(30:28): Even from day one, I'll feel out the situation, but I try to get families in there doing as much as they physically can to care for their babies as early as they can, even if it feels scary, knowing that we're there to kind of cheerlead you on and troubleshoot, but that ultimately, it's not my baby. It's your baby. And the whole point of the NICU is to grow the baby and the parents' skills to be able to care for the baby at home. So you're the number one care partner, the number one, the team leader of it all. But it definitely, it is still a little bit atypical because you are sometimes asking for, is it an okay time to touch my baby or really feeling comfortable with the needs of each baby? So it's a learning curve, but the ultimate goal is to have you do it all, especially as you get closer to going home when you can't bring your NICU nurse home with you, you exactly.

Dr. Nicole (31:31): And it can definitely, when you have, especially a tiny baby or premie feeling like, what am I supposed to do with this little person? But your NICU nurse is going to be a great, they're going to be your partner in helping you just taking care of this baby, helping you get in there and say, you're going to change this diaper. It's going to be good. You're going to give this baby a bath. It's going to be fun. And they help you get used to having this tiny baby. I've said this before, NICU nurses are angels and they're really help guide you through all of the things that happen.

Mary (32:04): Yeah, we're here to support both the baby and then also the families because it's just like in ob, it's one patient. Definitely. Definitely. It's take one unit

Dr. Nicole (32:15): Becomes

Mary (32:15): A pair.

Dr. Nicole (32:16): Yeah. So one thing people certainly get concerned about when their baby goes to the nicu, especially when it's unexpected, is breastfeeding. So what does breastfeeding look like in the NICU

Mary (32:27): That very, it's an interesting question because breastfeeding is so supported in many ways in the nicu, and then it's also hard. So we treat breast milk as a medicine in the nicu. The gold standard from the a p is any preterm infant should have breast milk, even if the mother is unable or unwilling to pump. So a lot of our micro preemies or really smaller age will have, if you're unable to pump milk, then it would have donor milk from a milk bank. And if you are going into the NICU space and your end goal is to breastfeed or to provide breast milk, pumping is a huge part of the NICU journey. And the most important part to think about there, and that's part of the prenatal planning, is because most babies, especially even if they're term and they're admitted to the nicu, a lot of them will not be able to latch in the early stages, whether it's because they have a feeding tube or respiratory

(33:24): Support

(33:25): Or something else going on. So early pumping is key to establish healthy milk supply. So then when things settle down and the baby's able to start latching, you already have the milk supply established. So that's something that I see kind of fall through the cracks is that people are so focused on their baby and their wellbeing that they're forgetting about the pumping piece of it, especially in the first 24 to four, eight hours, really important when the baby would normally be there. But most babies, there's lots of different layers of breastfeeding. We use this model called love lick latch learn, teach that in my doula training is that in the beginning to establish breastfeeding, it's loving. So that's skin to skin, having time and the baby learning that being on my parent is my safe place. This is my happy

(34:20): Place. Got it.

(34:21): And then eventually they go to the licking stage where you maybe do skin to skin, but sideways, kind of closer to the breast so that they can start to connect and connect the dots there. And that might not be latching, it might just be licking while the baby's getting a tube feed. But again, it's connecting the dots and creating these really positive moments. And then eventually they'll have moments of latching and learning about it and creating stronger skills and then leaving. And that would be ultimately exclusive breastfeeding. In a perfect world, if that's the goal, but oftentimes a lot of babies from the NICU will transition home with some bottle feeding as a bridge. So just kind of having that as a frame of reference can be helpful. It doesn't mean that you're never going to get off of that or that exclusive breastfeeding. Your goal is not possible. But it does look different for having a NICU experience involved just because of the logistics of the baby being able to transfer milk effectively and safely. It's different, but still beautiful.

Dr. Nicole (35:24): Yeah. Would you say that most NICUs have lactation consultants in them?

Mary (35:29): I would say at least the level threes and level fours have NICU specific ones. Most hospitals, if they have a postpartum, will send a lc down if requested. But it's becoming more and more common to have a NICU specific one for at least, maybe not 24 7, but at least during certain times of the day to help parents transition

Dr. Nicole (35:52): Because it is different.

Mary (35:53): It is definitely different. There's often, if you're in the nicu, you'll be set up with a hospital grade pump that can really help establish that early milk supply, and then the transition to learning how to eat, because NICU babies, a term infant comes out usually ready to go and knowing how to do it. But a baby that had a harder start or was preterm, they literally have to learn how to eat. It takes time and practice and support from the person who's feeding them, and then your team around you.

Dr. Nicole (36:25): Yeah, I tell parents it's actually a little more challenging than we realize for babies to learn how to swallow and breathe all at the same time, and they get it all mixed up sometimes.

Mary (36:36): Oh, they sure do. Well, it's also running a marathon for them. It's how they, it's like what their whole exercise is. It's a lot of work.

Dr. Nicole (36:47): Definitely. Definitely. Now, one thing that can be a challenge when you have a baby in the NICU at any point in time is what to tell friends, family, how to manage those things. So what are your suggestions around that?

Mary (37:02): Yeah, even if you never have a baby that needs a nicu, I feel like most people know someone in their life. The NICU affects someone in your circle, whether it's your sister or your neighbor or someone that you work with. One of the things that I hear time by time again from families that they would like for support is tangible support. Instead of being like, how can I help? I'm here for you, is saying, I'm going to walk your dog and drop off a bag of groceries.

(37:31): Because

(37:33): When families are in the nicu, typically you want to, to maintain that NICU bubble, you want to be able to just focus on your baby, but life is still happening around you and your postpartum too, and dealing with the healing process of that. So for families, people that are supporting a NICU family, I say offer, feed them if they're in the nicu, offer DoorDash, feed them things they want to eat because hospital food, it ain't it. So

(38:01): You

(38:02): Want to be able to feed things that they want to eat because so often I'll talk to a family and be like, how are you doing? And they'll be like, when was the last time you ate? And they're like, oh, I don't know. I truly don't know. So things like making that easy for them is key, or walking the dog, picking up a sibling from preschool. But if you are in the nicu, it can also be hard to manage people depending on who the people are in your life that are supporting you. Sometimes people take on this experience as their own. And I always tell families, you just need to worry about your own feelings. You do not need to worry about anyone else's feelings right now. They can deal, they're big, they're adults.

Dr. Nicole (38:46): They

Mary (38:46): Could deal with their own feelings. So protect your bubble and let in who is there to actually support you, but don't feel bad about holding your ground and telling people right now, we are so grateful for you. We love you, but right now this is what we need to do for our family. And it might mean not visiting or it might mean visiting later, or it might mean you might want everybody there. It just depends on what works for you. But know that you don't owe anybody anything. I also suggest having one point person as the updater. So instead of you being there texting 45 people or asking the same question, I say, ask, make your sister your point person or whoever it is, and you tell them an update and they disseminate. Tell everybody

Dr. Nicole (39:34): Else. Yeah.

Mary (39:36): Because hard enough to have to manage your own self and your baby. You don't need to have everybody else all up in your space.

Dr. Nicole (39:44): Definitely. And speaking of managing yourself, didn't, sometimes I throw in questions that come up in my mind, but how do you help families deal with guilt potentially around having their baby in the nicu, whether they're concerned that they did something wrong or could have done something different, or whether they're like, oh, I can't visit my baby all the time, or I can't be there as much as I would like. How do you see that play out?

Mary (40:12): Yeah. The inner monologue of a NICU family is really intense. A lot of times they're not speaking it out loud, but there's often feelings of guilt, shame, anger, there's a lot of anger, whether because of thinking about how we got to this place and then being angry that this is what their postpartum experience looks like and that they didn't want this, no one wants to be in the nicu. So no, you can't just be like, you did nothing wrong. It's fine. And that thought just goes away from your head. But I encourage, I mean, everybody, I kind of say the glasses analogy. So I have terrible eyesight and I use glasses, and that doesn't mean that my body is less than or that it is wrong. It just means that I needed support in this one area to help my life progress.

(41:12): And

(41:12): So that's kind of how I see the NICU or having a different birth experience than maybe you expected is that

(41:20): Everybody's body is different. No one's body is less than, it's just different. And everyone's path to motherhood is different, but the NICU families are because of what they went through, they're so strong and they're so resilient, and they can handle anything after this. If you can get through the NICU stay, you really can, which you do, you can do anything. Everything else seems like easy peasy. And the community between families is so incredibly empowering and beautiful. People who are a year out, they're seeing families in the thick of it, and they're reaching down and trying to pull them through. So the other thing I like to say is with the guilt with not being there with your baby all the time in 24 7, is that your baby won't remember those nights apart. What they're going to remember those thousands and nights the year together after the NICU's chapter one,

(42:11): And

(42:12): It is sometimes an intense chapter, but it is just chapter one and it's just the beginning. So how you show up as a parent to your baby the rest of their life, that's where the meat of it is, and that's where parenthood is. So

Dr. Nicole (42:28): For sure, for sure.

Mary (42:29): Yeah. It's not easy though.

Dr. Nicole (42:30): Yeah, it is not easy. But that leads us very nicely into the next question is what would you like people to know about life after the nicu, both for parents and for baby? I'm sure you have a couple of things, but one of the things that I noticed that I want you to talk about I saw on your Instagram was mental health for parents.

Mary (42:50): Yeah. I think that's something that is also not talked about is when we're talking about the guilt and the shame and the anger, a lot of NICU families are set up basically for having perinatal mental health issues. It's 70% estimated of NICU families have either postpartum depression, anxiety, OCD, and about 40% develop actual clinical PTSD from a NICU stay. And some of that is because of how,

Dr. Nicole (43:14): Wait, I'm sorry. Say that one more time.

Mary (43:19): The most recent statistic is about 40% of NICU families have clinical PTSD. That's

Dr. Nicole (43:25): A lot.

Mary (43:26): It is, and it can show up. The other piece of that is it's about 25% of them have PTSD while in the nicu. So most of them are developing these things long after a NICU stay. Ultimately, if you're I, all the clients that I work with, as we transition to home, when you're in the NICU in those early days home, you're still in this fight or flight. You are in it. You're in this little hole almost, and it's when you take things settle down and you can take a breath and look, take a step back, that's off when it's like, whoa, what just happened to us? And that's often when these more intense feelings start to show up and impact their lives. So I always encourage families that even if you feel okay, now, have a plan. Who are you going to talk to? Who are you? What are the resources in your area? One I like to share is that Project ICU is a nonprofit. They offer a free month of mental health support for any NICU family through better help and then a lifetime discount. So it's recognized that this is an issue. It's just sometimes when you're in the thick of it, it's really hard to find help.

(44:43): I had really severe postpartum depression with my second daughter, and I was like that NICU nurse that told everyone to go find help, and then I didn't do it myself. So the thought of making an appointment felt impossible because I didn't prep appropriately beforehand. I thought I was out of the woods. I was three months postpartum. And then it just

(45:00): Poof,

(45:01): It hits you. But the NICU does kind of just because you're discharged doesn't mean that everything's fine. And that's the same if you're supporting a NICU family. The NICU is hard, but those early few months home are really when families need that extra support because it's all on them. Right? Then you're starting your postpartum journey almost over again, and you're adding in the sleep deprivation and the worry and the anxiety and the appointment. So those early months home are tricky, but they're also so exciting because you're becoming more of an autonomous parent and you're learning your baby in a new way and bonding and connecting and showing up in a way that you maybe couldn't do in the nicu. So there's a lot of intensity as you transition home, but there's a lot of beauty too.

Dr. Nicole (45:53): Yeah,

Mary (45:53): Yeah, definitely. But it is definitely something to think

Dr. Nicole (45:56): About. Yeah, it doesn't quite, as you mentioned, it doesn't quite end with the nicu, especially if your baby was a preemie or had complex problems. There's going to be appointments and you're tracking milestones. I mean, to some degree, it's like every person going into parenthood. There's this whole new journey, but there can be a lot more layers to it when you have a NICU baby. And then the last thing that I want to talk about is you had mentioned a NICU doula, which I have never heard about. So what is a NICU doula?

Mary (46:27): Yeah, so it's kind of a newer thing. We're out there in the world and it's growing. So a NICU doula is someone who is specialized in the emotional, physical and mental support of a NICU parent. So sometimes we are able to support before during a NICU stay, and a lot of times it's that specialized support during the transition home. So my dream in the next years, I'm creating a whole NICU doula certification program for families or for people who want to have a curriculum and a better understanding. A lot of times it's maybe a NICU nurse that wants to support families in a different way or NICU family that wants to pay it back. And then I also have a training currently for doulas who are already doulas, but want to learn more about the NICU experience and be able to support families in a different way. Because what happens typically in the NICU setting is that the nurses and the neonatologists we're clinically trained to care for the baby, and the family is we're there to support as much as we can, but the priority is always going to be the baby care. So a lot of times the family's needs kind of fall through the cracks,

(47:40): But

(47:40): The doula is someone who could really hone in on those emotional support and connections and bonding and physical postpartum healing so that the parents can then show up to their babies in a more whole and healthy way rather than so they can thrive instead of just survive. Really the nature experience.

Dr. Nicole (48:01): Yes, yes, yes, yes,

Mary (48:02): Yes. So it's developing and it's growing, and I'm so excited to see where it's going to go.

Dr. Nicole (48:08): There's

Mary (48:08): So much potential

Dr. Nicole (48:08): I can be for sure. Yes, definitely. Definitely. Then as we wrap up, what would you ask these questions of all of my guests? What is the most frustrating part of your work?

Mary (48:20): I think one reason why I started the NICU translator in the first place is knowing the resources that families need and kind of the right things to do, and then not being able to implement them in a way that is impactful and quick. So I guess it's kind of not allowing families to have the empowered and informed decision making that they could have. So it can be really frustrating because then families feel just incredibly overwhelmed. And I think it adds to those PTSD symptoms when there is this lack of knowledge and empowerment. But that kind of is definitely something that frustrated me to the point where I decided to create a whole new business to kind of go around the outside and do it in my own

Dr. Nicole (49:04): Way. There you go. There you go. So then on the flip side, what's the most rewarding part of your work?

Mary (49:10): I think, well, one of my most favorite things as a NICU nurse is most nicu, especially the big ones, have a NICU reunion

(49:18): Where we get to see the alumni come back and see all the hours that we poured into caring for these babies and supporting families, and just seeing how they just thrive at home. It is so incredible. It's just the coolest feeling to know that every time that I show up to work or do the work that I do, that I'm actually making a difference and that my work matters. So it is so incredible to see the resiliency of babies and just watch families go from being scared and overwhelmed to empowered and confident and NICU boss families. They're incredible people.

Dr. Nicole (49:54): Yeah, definitely. Definitely. So then, what is your one favorite piece of advice that you would like to give to expectant families?

Mary (50:02): I would say to be able to allow yourself to plan for the unexpected without letting it overwhelm your hope and your dreams for the future. So having the ability to make informed and empower decisions regardless of what your birth story looks like.

Dr. Nicole (50:20): Yeah. Yeah. I love that. I love that. So where can people find you and what are some of the resources that you offer folks?

Mary (50:26): Yeah, so I am on Instagram. I'm at the NICU translator. My website is the nicu translator.com. I have a bunch of free resources there. I have a NICU discharge checklist. I have that NICU birth plan template that you can download and fill out, however feels right to you. And then my other free resources, we have an online community called Life After nicu, which brings in Experts monthly and has kind of an online forum where families can connect with each other and also with other NICU professionals to kind of help get their questions answered and connect during that transition to home.

Dr. Nicole (51:00): Nice.

Mary (51:01): And then I also have my NICU doula training. If you're doula listening and you want to learn more about supporting families, it's also on the website@nikkitranslator.com.

Dr. Nicole (51:10): Awesome. Well, thank you so much, Mary, for agreeing to come onto the podcast. This is such useful information. Everybody needs to know this if they're having a baby. It's about preparation and not being overwhelmed with preparation, but you'll just have these important bits of information in your back pocket just in case. Wasn't that a great episode? I love having people on who are so enthusiastic and passionate about the work that they do and really serving and helping others, and that's what Mary is. Now, after every episode when I have a guest on, I do something called Dr. Nicole's notes, which are my top takeaways or thoughts from the conversation. Here are my Dr. Nicole's notes from my conversation with Mary. Number one, the NICU is really great at caring for babies. I will say, in my experience, both as a NICU mom, although that was many years ago, 16 years ago, but also in my experience as an ob, GYN, there are definitely opportunities for improvement in helping care for parents of NICU babies.

(52:17): Neonatologists are really just trained to mostly care for babies. Now, there has been some improvement, but there is still opportunity for improvement. And this is where someone like Mary is just really, really helpful and filling in that gap because you will learn if you have the experience of going through the NICU, that you need some care too. And this is something that I wish I would've had when I was a NICU parent back in the day. Number two, the things that you have to prepare for can feel really overwhelming sometimes around pregnancy and birth. So you got to prepare for labor, you got to prepare for birth, you got to prepare for breastfeeding, you got to get all the baby stuff ready. You got to know how to take care of this baby. And I don't want understanding the NICU to be another thing to add to your plate that adds any sort of stress, because honestly, it really isn't that much that you need to know in order to not feel completely blindsided.

(53:16): If this does happen for you, you've listened to this episode, which is great, and then just head on over to Mary's website, the nicutranslator.com, grab that birth plan questionnaire that she talked about, the questions that you can do, and that's going to put you in a really good situation. Hopefully you will never need the information, but you will have it just in case. And then the last thing I'll say, and this may come across as a little bit of a random thought, but there really is so much value in learning about pregnancy and birth from experts and people who have firsthand knowledge and experience in this, like doctors or in this case, a NICU nurse, that insider's view and perspective is really important. And it can also help drive system level change. And the reason that I bring this up is that there has been more of a backlash against experts, and that's not a good idea.

(54:15): Now, I'm not saying believe everything and expert says just because they are an expert, alright? We should all be questioned about the things that we share and talk about. What I'm saying is not to automatically discount what someone is saying because there is an expert. That's what I'm seeing a lot of, and that, quite frankly, I believe is dangerous. So take people's opinions into account. Don't just dismiss something because they've been considered an expert. I think if you're listening to this podcast, you kind of like experts. I know, I realize my audience probably is going to appreciate that, but I just think it's important to say that we don't dismiss the opinions of experts because it's really, really important. Okay. So there you have it. Please share this podcast with a friend. Also subscribe to the podcast wherever you're listening to me right now, and leave me a review on Apple Podcast. I'd love to hear what you think about the show. I do shout outs from those reviews from time to time as well. And head on over to drnicolerankins.com/survey. Only takes a couple of minutes to fill out. I would love to know more about you as a listener. So that's it for this episode. Do come on back next week and remember that you deserve a beautiful pregnancy and birth.