Breastfeeding a Preemie: Expectations & Challenges

In this episode, we discuss the realities and obstacles of breastfeeding a premature baby. Jacqueline welcomes Jodi Klaristenfield, the founder of FLRRiSH, to share her personal experience of giving birth at 28 weeks due to a life-threatening condition. Gain insights into breastfeeding in the NICU, supplementing with formula, finding support during your NICU stay, and identifying ties and proper sucking and swallowing techniques.

Jodi's personal journey inspired her to create FLRRiSH, a comprehensive platform dedicated to providing NICU parent education, empowerment, support, and resources. Tune in to gain invaluable insights and guidance on navigating the beautiful yet demanding journey of breastfeeding a preemie.

In this episode, you’ll hear:

• The crucial role of breastmilk for premature babies
• How lactation works when a baby is still supposed to be in utero
• Strategies for bonding with your NICU baby, even without breastfeeding
• Techniques for fortifying breastmilk with formula within the NICU
• Where to seek support as a parent of a premature baby
• Identifying ties and diagnosing proper sucking and swallowing in preemies

A glance at this episode:

• [5:45] Jodi’s background and why she created FLRRiSH
• [8:38] What it’s like to be a parent to a preemie
• [10:52] How can lactation work when you have a premature baby
• [14:54] Supplementing with a premature baby
• [18:30] Ways that moms can bond with their babies in the NICU if they can’t breastfeed
• [22:17] The importance of kangaroo care for preemies
• [27:18] The transition from tube feeding to sucking and swallowing
• [33:32] Some issues that are impending feeding
• [43:38] The importance of community and having a support system
• [49:04] Advice from Jodi for moms who are going through similar situations

Related Links:

• NICU Connection Circle June 20th Use code Welcome10 to get $10 off your ticket
• Jodi’s Website
• Jodi’s Facebook
• Jod

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Transcript

Jacqueline Kincer  0:38  

Welcome back to the Breastfeeding Talk Podcast. I'm your host Jacqueline Kincer. And today's guest is Jodi Klaristenfeld, and she is the founder of FLRRiSH spelled in a very unique way. So we do get to that later. And of course, you can always check the show notes, but it's FLRRiSH. And she's a mom to an adorable little girl who was born at 20 weeks due to a rare and life-threatening form of preeclampsia and help syndrome. After her daughter's birth. Jodi quickly discovered preemie moms and dads aren't always given the support that you need. As a result, she created FLRRiSH, a platform that offers NICU parent education, empowerment, support, and resources to help families navigate this beautiful and challenging journey. Jodi, her husband, and her family live in New York City. 

And because of everything Jodi has gone through and her now expertise in supporting parents who are going through something similar or have been there. We are going to be talking about all of those things in today's episode. She's just such a wonderful person who has personally gone through this. So if you didn't get a chance to listen to Dr. Susan Landers' episode last week, where I interviewed her about preemie babies and lots of other things regarding breastfeeding, babies, and motherhood. She's amazing. In fact, Jodi and Dr. Landers actually know each other. So how cool is that? I love that there are episodes going to be back-to-back. But you don't need to listen to that one first. But I would encourage you to go back and check out that interview with Dr. Landers. Because she just, you know, gives us kind of the doctor and mom perspective. And Jodi's got more of the mom perspective, which I find so valuable, you know, I did not have a preemie myself. And of course, I've supported, you know, lots of families who have, but I think that you know, you'll hear about her perspective on you know, the special connection that preemie parents have with one another and even NICU parents, right? 

So you can have a NICU baby, but that's not necessarily a premium as well. But before we dive into the episode, I just wanted to give you guys a couple of quick reminders. One is it's so important. If you love the show, if you're a subscriber, and you get that downloads every week automatically, please leave us a review. It goes a long way to helping our podcast show up whenever anybody searches for breastfeeding or lactation and topics that our episodes cover. So it also is a great way to let you let us know that we're doing a great job. And if you ever have any suggestions for the podcast, if you ever want to be a guest on the podcast and share your personal story, or maybe you're a professional that has some expertise and perspective that you think our audience would love, you can always send us an email to the podcast at holistic lactation.com. 

And the other thing that I think is so fun, and we get lots of great conversations going is when you take a little screenshot of the episode, you're listening to post it to your stories tag us at holistic lactation on Instagram, we get that notification. It's great to just say hello, and you know, thank you for sharing. We'd love to hear what you've learned from the episode. Maybe just share, like what's a key takeaway or something, you know, really valuable there. The other cool thing is whenever you do that, somebody sees that, who needed to see that? And they got some information in support that they didn't otherwise know existed. So thank you to everyone who's been doing that because we love to see your posts and get to say hi to you. We don't love just posting in a vacuum and being like, hey, here's a post. Here's a post. Here's a post. Social media is meant to be social. Sometimes it can be really antisocial. So like Come say hi. Come in our DMS and say hello.

But yeah, I really would love to get you introduced here to Jodi hear what she has to say about her incredible journey, and really just take the time to dive in. I will say there's really no content warning needed for the episode. God knows exactly how to speak to parents who have gone through some traumatic things with their little ones. So grab a coffee, grab water, put your headphones on, go on a walk, whatever it is, and listen to my interview with Jodi She's amazing. Welcome to the show, Jodi I'm super excited to chat with you today because this has been a topic that we've been talking a lot about on social media. And just I think it's one that doesn't get enough coverage and enough information, especially ahead of time for parents, but that's preemies and the NICU experience. So yeah, I'd love for you to just say hello to our audience. And tell us a bit more about yourself. 

Jodi Klaristenfeld  5:21  

Well, Jacqueline, first, thank you so much for having me on your show today. I look forward to having a great conversation with you. And I hope that your listeners get to learn a lot from my experience and that if they have a similar experience, they don't feel so alone or that they know where they can go to get some help. Yes. So I created FLRRiSH, to support, empower and educate NICU and preemie families on their journey through the NICU and beyond. When I gave birth to my daughter at 28 weeks, it was a complete emergency, I actually had no idea how sick I actually was. And my husband and I were thrown into this world of medicine, Nick use terminology. So many things never occurred to our net, the thoughts never even entered our minds. Yet, we had to get up to speed really quickly. I also felt while I was so happy to have had a child, I also felt so scared, so overwhelmed, fragile, and very alone. That's not to say that I don't have a wonderful husband or family. But the actual experience in and of itself is very isolating, especially when you don't know anyone who goes through the journey that I had. And lastly, I think it's important to note that over 360,000 babies a year in this country are born premature, which amounts to approximately 10.5% of babies born in this country, which is the most of any first-world country in the world. 

So chances are one in 10 people if you're in a room, someone will have had a premature child. Wow. Those are some staggering figures that really put it into perspective when you put it that way. I mean, that's a lot. That's a lot of babies. I think so many times we think of it as this rare thing, or it doesn't happen very often, which it's not the majority of the time, but that's still a lot. Yes, certainly more often than people expect. And when I say preterm, I mean everything that's before 37 weeks, 37 weeks, and pass that is considered full term. But yes, it does happen much more often than people are aware of. And that's why I felt that I couldn't have been the only person that felt those feelings plus a whole host of others. On my journey, there had to be other parents out there in the United States, and quite frankly, in the world, that feel the same way. Yeah, absolutely. So. So you go through this experience, just kind of blindsided. It sounds Right. And, you know, you've come a long way since then. So I don't know what you'd like to share about your experience with your daughter and whatnot. Obviously, there's, you know, some huge emotional components and worries and things of that nature.

Jacqueline Kincer  8:47  

But somehow you've found a way to learn about what it's like to be a parent to a preemie and also how to support parents in that. So yeah, I don't know even where to begin there. Because there's so much right. It was such a short time in your life, but also probably feels like a really big part of your life and your daughter's life.

Jodi Klaristenfeld  9:10  

Yes, I mean, those 77 days, were some of the hardest, if not the hardest of my life, I learned a lot about myself and I learned a lot about my daughter, and mainly how much strength we have and the resilience the human body and the human spirit has. And I share with my daughter every single day about her strength and her resilience and that these are qualities to be applauded for and that she should be proud of herself for. It's also, you know, I think this experience did a complete reset for me for my life. Not only did I create FLRRiSH, but also It did reset what's important and how I want to spend my time. And it also gave me a sense of really appreciate that really appreciating human growth and development. And all the little wins along the way. I have rethought about instead of looking long-term looking in small incremental steps, and I tell that to a lot of preemie parents, because all those little wins in the aggregate, are amazing. We, as a society, are told to look at these huge milestones, but what about all the challenges and the tasks that need to be conquered before achieving the milestone itself? Yeah,

Jacqueline Kincer  10:46  

that's, that's a really good point. And, you know, to kind of transition what we're talking about in the context of breastfeeding, maybe we could, I don't, I don't want to get ahead of ourselves. So maybe we can even talk about when you have a premature baby. And, you know, I think for some moms, a lot of moms that doesn't even occur to them. Or they might assume that breast milk production isn't possible when their babies are born early. They're thinking, you know, my body's not ready to make milk yet. So maybe you can talk to us about that and explain how, how can lactation works when you have a premature baby?

Jodi Klaristenfeld  11:26  

Well, I was one of those moms, when I was told that I could start pumping because, at 28 weeks, she did not have the sub-swallow breathe triad down yet. Um, that's not something she was able to do. She was still learning how to breathe. So I wasn't even aware that I could produce milk. But somehow the brain sends the message through your body that the baby is no longer there. And honestly, the milk for premature babies that colostrum that really sick. I'll say the yellowish type of milk is so super important for preemie babies. And quite often, you know, preemie moms have gone through trauma. Most of the time, it's not something that is expected. So the last thing a mom feels like doing is being hooked up to a breast pump. Even though you know that it's so good for your baby. But it really is so, so important. Especially if you can produce milk. I think there are some moms, whether they give birth full term or preterm that just can't produce milk, and that's okay. But if you can, it's so important, especially in the in preemie babies, because they're still growing, and they're getting all your antibodies and nutrients through your milk.

Jacqueline Kincer  13:08  

Yes, yeah. I mean, obviously, I agree, because I'm a lactation consultant, but, and I know all the science behind it, right? And yeah, to your point, like, you know, milk production does actually begin, you know, while you're pregnant, and you can start making colostrum is really 16 weeks pregnant. So if you have a 24-week, or your body's already producing that colostrum, whether or not you've seen it, come out, or are trying to get out, it's there. And then really, you know, full lactation is triggered by the birth of the placenta. So there's a shift in hormones. So as long as the placenta comes out, lactation is possible is what I tried to tell people. In fact, just kind of like a cool tidbit. People who are trying to induce lactation without pregnancies. So I've worked with adoptive parents to do this. Sometimes, like, you know, to female partners in the family, the non-birthing partner will want to try to induce lactation because they're like, Hey, happy anatomy, I could help my partner out. There's a protocol that you can use with birth control to manipulate your hormones and mimic pregnancy and then birth by creating that progesterone rise and fall. So anyway, it's about the hormones, folks. But yeah, there's, you know, a small percentage of women who will not be able to make a full milk supply, it would be exceedingly, exceedingly rare to not make any at all. So if that's not happening, like, definitely, you know, get checked out. So just wanted to give that little plug that, you know, it it's very, very possible, like you're saying and, you know, breast milk is really, really important to these unique babies who have some special needs health-wise. So maybe you could tell us a bit about that. But also, I think it's important to speak to that breast milk alone. is usually not enough when it comes to premature babies. So I don't want people to get the wrong idea. But yes, we were advocating for, you know, as much breast milk as possible. But we need other things, too.

Jodi Klaristenfeld  15:11  

Yeah, we supplemented or fortified my daughter's breast milk for until I stopped. Actually not until I stopped pumping because after I pumped, she still had almost three months supply that I had in the freezer. But we fortified her milk all the time. And for preemies, it's important that they eat, sleep, and grow. And part of the eating and the growing is gaining weight, and how do they gain weight through the milk, and the fortification just adds to the calories and adds to the nutrients to make sure that they're getting absolutely everything that they need, that they would have been getting 24/7 Had they been inside the mom's belly. But instead, since they're outside, they're not getting fed all day, every day, they're getting fed small amounts over different increments of the day. And this is a way to help them get those extra calories. So I'm glad you brought that up. Because I've spoken to many moms as well, who say, Well, I don't want to fortify my milk. And I can only speak to the positives of it. Because my daughter did gain weight. And I continued to do it, you know, until, until we didn't have to anymore, I waited for our pediatrician to tell us that. So I would tell anyone really to go ask your pediatrician. Or ask the lactation consultant, you know, such as yourself, because they would have, that's what you're trained in. They have a better sense of what your child needs. I think especially with respect to this than I did,

Jacqueline Kincer  17:05  

yes. Yeah. No, that's good advice. For sure. Because, I mean, we, if anyone wants to listen to the episode before this one, if you haven't listened, we had Dr. Landers on and oncologists. And she talked about, you know, that need for fortification, because premature babies have a higher protein requirement. Right. So you're talking about that growth aspect? But yeah, it's never, you know, typically, you want to consult with the pediatrician and the lactation consultant like I pretty much never would go against a pediatrician's recommendations. If they're saying that your baby still needs to have fortified milk. But at the same time, I'm usually the one that has a little bit more up-to-date evidence and training on those things. And I can go well, here, if we look at the numbers, right, the growth curve, this and that, you know, typically we can start to wean off of that fortification, but we can like to keep an eye on things and do weekly weigh-ins or whatever it is, right. So as parents, sometimes your emotions can guide you a bit more if you work with a professional who can have just that like degree of separation from things, it can be really helpful for you, especially if you get in your own head. So yeah, I appreciate that. And, and to like, even if, you know, like you talked about pumping, right? So pumping is not fun, ever, especially not when you have a preemie, and you're worried about them. And if you're having to bring milk back and forth to the hospital and the NICU and all of that, right? And I know I've had parents express this, that it can be really hard to feel like they're connected with their baby, especially, you know, when they're in the NICU, what are some things that you would say, are ways that moms can bond with their babies and provide for their nutritional needs, even if they can't nurse yet, I couldn't nurse

Jodi Klaristenfeld  18:48  

my daughter for that the first two months of her life. And I have to tell you that I felt so close to her, even though she wasn't in my belly. And even though she wasn't getting her nutrients directly from me. So I want everyone to understand that just because you're not nursing doesn't mean that you can't bond with your child. And that's really important to note. There are so many ways whether it's by touching or doing care for your child, which pairs it means, you know, doing some bathing or maybe changing their diaper, anything that's typical of the role a parent that would play that they can do while they're in the NICU. For me, I happen to love skin-to-skin also known as kangaroo care. I found that to be such a bonding experience and that's where you basically hold your baby's skin to skin on your chest. and a bonus for dads out there is that dads can do this too, and that they get to bond with their child in a way that they would never get to. Because typically the baby is inside them. So this is something that the dads could do as well. But I would hold my daughter easily, like four hours a day on my chest. And I don't know who got more out of it, me or her. I know I definitely was like dripping in sweat, just from the heat of also the NICU and everything else. But I loved feeling her on my chest. And for me, that felt like she was home felt like she was in the right place. And I was in the right place. Even though our birth story was somewhat unorthodox. And just to have that sense of her, my heartbeat and her heartbeat together was so natural and so wonderful. And to me brought me closer to her than I think I ever would have thought possible. So it's really important for parents out there to know that just because your child isn't directly nursing from you, there are multiple ways to sing to your child, read to your child, there are so many ways that your child can respond to you because your child has also heard you for all those months. Similarly, your child has heard your heartbeat for all those months. And for me, someone who had preeclampsia and help syndrome. Statistics show science shows that it helps blood pressure. And I would do this sometimes I would take my blood pressure I used to call them cuddle sessions before one cuddle session. And then after and my blood pressure would be so different. Because I just was able to bond and be with my daughter. It was really, really nice.

Jacqueline Kincer  22:17  

It's just that's beautiful. You know, I think I mean, yeah, everything you're saying. Even though it might be something that, you know, we could sort of, you know, designators is maybe even a spiritual kind of connection that you might have with your child. Like you're saying something definitely emotional there. There's all the science to back it up though. As we know that you know, petting a dog or a cat lowers blood pressure and of course holding your newborn baby would have the same effect. I mean, unless they're like screaming their heads off, but that's not going to be the NICU baby that's sleeping. Um, that comes later. But hopefully, um, but yeah, I love that. You know, I think you've given some great tips, too. And, yeah, you're getting your heartbeat and seeing skin-to-skin that promotes your baby's, you know, respiratory rate, their body temperature regulation, like there are so many benefits that we always try to talk about when it comes to newborns. But oh, my goodness, like so much more important for preemies. And yeah, just that whole experience, like you're saying of you know, being able to make that connection. And I always think too, it's like an opportunity for one you to slow down like your healing, you know, even if you didn't make it to 40 weeks pregnant and get as you know, quote-unquote, big right as somebody who else did your body is still healing, especially if there was some birth trauma around that. So I think why not just spend that time? I'm curious if you found like you said, you got to do this kangaroo care in the NICU. Was that something that you had to advocate for? Were they encouraging you to do it? I'm just curious what that environment was like and what parents might expect

Jodi Klaristenfeld  23:57  

in our NICU. They encouraged it. Again, me being sick, with a few things. My daughter got donor milk for the first couple of days. Because I had magnesium. She couldn't have my milk, soy. And I didn't meet her for a few days because I was hallucinating from the magnesium. And when I met her, they had asked me if I wanted to hold her. I didn't hold her that first night I met her. I helped her the next day. I was still unsteady and unsure of everything. And then the next day when I helped her everything just felt so right. And as scary and as overwhelming as it was again it still just felt like I knew she was my daughter. She knew that I was her mother. And there was still that something there between the both of us, but our NICU encouraged it. And we were lucky that we were able to be in our NICU, essentially 23 out of 24 hours a day. So and of those hours, my husband and I probably held her good, I'll say, eight to 10 hours a day.

Jacqueline Kincer  25:22  

Wow. I love that.

Jodi Klaristenfeld  25:25  

I'm convinced, you know, that she did well, by and large, aside from the wonderful care from the doctors and the nurses and the love they gave her, but because we were there to be able to cuddle with her so much. Yeah, and, you know,

Jacqueline Kincer  25:43  

more and more, you know, hospitals are going that way, they have been for a while, you know, I always kind of say that you know, lots of moms and parents seem to do a lot of research during the pregnancy phase, whether it's, you know, choosing the pediatrician and choosing the hospital and then sort of breastfeeding gets left as an afterthought, which is fine. Well, we'll get there one day, but one of the things that a parent might want to consider when you're looking at birthing facilities is what are your resources for a NICU? Or the closest NICU? Should you need that? And do they support those things like kangaroo care? Do they have the availability of donor milk? Should your baby need that, right? Like, maybe these are just some things to research and look into because you never know, no one wants the worst to happen, or the less-than-ideal to happen. But I think those are maybe some good questions for parents to ask. But thankfully, we're seeing most NICUs support the things that you described. So

Jodi Klaristenfeld  26:44  

also, I would encourage people that ask if they have like in our NICU, we could pump right then in there, they did have a separate room if you didn't feel comfortable pumping, because our NICU didn't have private rooms. But all the moms myself included, literally we just didn't care, we just pumped right then in there, but they encouraged it. And they would just take that milk right away. And they would use that milk at the next feed because it was the freshest. So very cool. You know, and I actually didn't even understand from a lactation and feeding perspective, how difficult it is for a baby to learn the suck, swallow and breathe. And it's such a huge accomplishment. And so when I talked earlier about those incremental accomplishments, how huge they are, that is one of them. Actually, I think that's a, like one of the biggest, actually in the in the NICU. Because it takes so much energy and effort on the baby's part, to be able to suck whether it's from a nipple on the mom or a nipple from a bottle.

Jacqueline Kincer  28:08  

Yeah, I think that's, that's often unexpected, like the transition from tube to sucking and how that works. Like. Yeah, I'd love for you to describe what that process was like, and kind of how long it took and what you noticed along the way, because there's definitely some consistencies, right that like, you know, we as healthcare providers are like, okay, yeah, they're like, you know, they'd be for three, four weeks now, this is what we would expect, right. And, and it's pretty, pretty accurate. Like, there is a process of, you know, sort of gestational development that we expect, you know, most babies to follow. But yeah, it can be one, and then like you were even saying to, to your point about preemies being considered 37 weeks and below. Babies born at 37, even sometimes 38 weeks can be these tricky babies that fool us into thinking that they're doing a great job with sucking and swallowing, and they're not doing a great job. So I don't know if you want to speak to that too. But just Yeah, I wonder what that process was like for you and your daughter with just moving forward on those important skills.

Jodi Klaristenfeld  29:18  

I would say it was extremely stressful for me. I don't know, it was stressful for her. But it was for me for a few reasons. One, before even trying to nurse she had, it's easier to get milk from the bottle. So that's what we gave it to her first N and watching her almost choke, right, and trying to manipulate that those reflux reflexes excuse me, was extremely scary and difficult. Thankfully, again, being in the hospital and having doctors and nurses right there. They knew that this was Tim Recall. But for me, it was incredibly, incredibly stressful. And again, when you see your child choke I and I had seen my daughter suffer from apnea, which is like 20 seconds of them not breathing. So in my head, I was going back to that, thinking, that can't be happening again, I don't want them banging on her back, you know, hitting her on the back. So from my perspective, it was difficult for that. And then also, when they take when babies take a feed, it is so strenuous. And holding the milk from the nipple for them is really difficult and labor intensive. 

So if they get tired out and can't finish the feed, they'd have to finish the feed through the tube. And while that is okay. On the flip side, mentally, it's a setback, because it's just another day that they're not feeding on their own. So that means another day, aside from other growth and development issues, right? That they have to stay in the NICU. Because one of one of the milestones is being able to sustain body weight, and your feeds over the course of two days. So if they can't finish the feed on their own, then you have to count back another day. Right? So for me, I found that stressful, but perhaps, in not what was even more stressful was trying to nurse because I didn't know. First of all, if she was getting enough milk, how much was the whole feed? Was she done? Was she tired? Or was it so they would weigh her before the feed and then weigh her after? To see right from an ounces perspective how much she had gotten. But also for me, I was worried if was it coming out fast enough. Was it too difficult for her to finish the beat? And again, I had all those other concerns. But she has to finish it through that too. 

Because again, if she got too tired, when trying to nurse, they wouldn't even necessarily give it to her through the bottle, she would then just finish it through her nose. So for me, I was very stressed about that, because I didn't want her to over-exert herself. But the interesting part about it was my daughter ended up having cheek and tone ties. So while it was taking her a long time to feed, on top of being born early and having that issue, there was the issue of the cheek and the tongue ties. And when she was about six months old, our speech and feeding therapist was the one who told us, and as soon as we got that taken care of it was like a whole world opened. Because then even taking it from a bottle. It was just it went so much quicker and was so much easier. So I would tell moms out there, I would tell moms out there again, just from my own experience, ask about it. I didn't even know to ask. And like I said, till we got to speech and feeding therapists. I didn't even know that was such a thing.

Jacqueline Kincer  33:32  

Yeah. Oh, I Yeah, it's true. And I think, you know, parents should know that just because you've asked a speech or feeding therapist or a lactation consultant or a pediatrician if they have ties. And you've been told no, that doesn't mean that that's true. Because they don't always have the right training to be able to properly assess and tell you. So if it's not really, really obvious, like tied to the tip of the tongue, it can often get missed. And I feel like because of all the things you're saying about the challenges with feeding that previous experience, so much is chalked up to the preemie status. And then we're overlooking Are there any other things that are impeding feeding, I have a colleague that just posted I think it was like last week and one of our professional groups, a photo of a cleft palate that she discovered, and I was like, how it's not like she was there at the birth of the baby. And she's the first one to do an oral exam. This baby actually had its tongue dye released. And nobody pediatrician, dentists, nobody said anything about this hole in the roof of the mouth. So yeah, breastfeeding is not improving just because like I'm tempted, at least because there's a cleft palate in there. And it wasn't like it was a submucosal cleft, but it was not invisible like her photos. I was like, glad they saw you. So anyway, that's a really, really one-off story, but I'm sharing that because this was also a premature baby. And, you know, there just were so many things that they were focussed on that. And just because they put a tube in your baby's nose doesn't mean they're doing some full oral exam to look for everything. So, yeah, I appreciate you mentioning that I'm so glad things improved once you got it. Like, I feel like so many parents feel like, Oh, well now my baby's six months, so it's too late, or it's not going to improve anything. But you're saying really helped a lot?

Jodi Klaristenfeld  35:20  

Oh, my gosh, it was literally like a game-changer. You know, at first, I thought maybe Oh, it was the nipple, right? Because we were still on the premium nipple versus the one nipple. So first thought it was that and then literally the first day, we had our speech and feeding therapist that she's like, is it a long time for her to feed? I'm like, it takes like a half hour, it's so long. And it's like, I'll say painful, but it's just so long. And then because of her reflux, we had to then hold her upright for another 45 minutes, right? So the whole feeding process just took a while. And literally, she's like, well, there might be a reason. And she told us to ask and look about the cleft palate, when. So when we got it taken care of it was kind of it was amazing to me. And then I was thinking, Well, why weren't we told about this before? But to your point, right? There were so many other issues, but thankfully, most of them were overcome by this point. But there were so many other issues to be focused on that that kind of fell off and just fell through the cracks for some reason. So you know, in advocating for your child, if you think something's wrong and unusual because it's taking them a while to feed free term or not. Right, you can get cheek and tongue ties. So go ahead and ask someone and find out.

Jacqueline Kincer  36:56  

Yeah. And I'd also like to just in case this question pops into somebody's head. It was they tied because they were born early. No. It's all pretty much said and done. Even as early as six weeks gestation, you may not even know you're pregnant yet. But certainly completely decided by 12 weeks. So if your baby is born, then that's a miscarriage, not a preemie. It's not because they're a preemie. So I never want a parent to like to blame themselves. You know, they had a health issue that led to that or no, it had nothing to do with you. It was going to be what it was going to be because it's really more genetic than anything. Yeah, I

Jodi Klaristenfeld  37:38  

actually found out that my dad had them and my brother so at least from in Yeah, you know, at least there's some genetic link from that perspective. For my daughter.

Jacqueline Kincer  37:52  

Yeah, absolutely. It is. So yeah, it's not your fault Dad's fault. But dad,

Jodi Klaristenfeld  38:01  

seriously?

Jacqueline Kincer  38:04  

Well, you sound like you got some really, you know, good support in terms of like health care. Sounds like you eventually got to connect with some other moms. Right. And now like, you know, you're sharing your story and your experience, you know, with us, you know, I'd love to hear like, where were the places that you when you like, did you seek support outside of the hospital? Where were the places where you found that what are some things that you would recommend for parents who are looking for more support and you know, having a NICU or a preemie baby,

Jodi Klaristenfeld  38:42  

I actually didn't have any support. I did. That's terrible. But that's why I created FLRRiSH, right? Because I didn't want other people to feel what I felt. There are organizations I didn't know of them. They weren't MSA publicized but they weren't made aware of to my husband or myself or others that we know in our NICU, such as the March of Dimes. And so hold today is a good day project NICU grams Foundation, there are a whole host of organizations, excuse me, that hospitals partner with, but also it's one of the reasons I created FLRRiSH. And part of FLRRiSH is it's we call preemie parent journeys. They're the reader to five minutes stories that parents can listen to about NICU experiences, and they're all meant to uplift and give positive feelings, and challenges overcome. Because, you know, even if you take two steps forward and one step back, you're still netting one step forward, and it's important to exude that positivity and feel that positive motion forward and not take in the negative. And to give that energy to your child, especially when you're doing skin-to-skin or just, you know, being there with them because I think they really feed off your energy. 

So I created these stories, and it also serves to let people know they're not alone. Yeah. Again, back to that isolation piece, we were in there for almost three months. And those months passed by I don't, I couldn't tell you one thing that happened in the world, I do not know. And I think, you know, I would have loved to have heard a success story, a story of something that maybe I that I'm experiencing that someone else experience, and how it is that they got to the other side of that experience. Because in any situation in life, when you're kind of, you know, not at your best, or going through a challenging time, you want to hold on to hope and hope that things are going to get better, and they are going to get better. It sounds trite to say that you just need time. But you have to surrender to the fact that it does take time. And I also feel fortunate that we live in a time in a place where there are so many specialists that we can go to get help for our children. You know, it's not like years ago, when both myself and my child would not have survived. So I feel so fortunate that there's medicine around, to help us. 

And in that also for FLRRiSH, I created lists of specialists, state by state, county by county where parents can go to get help for their children. I was given so many names of places that were either out of business, no longer accepting patients, the phone numbers were wrong, and the web addresses were wrong. So these are free, I created these and they are constantly updated, to make sure that the places are still taking new patients. That's important. And I also do group in one on one coaching because there wasn't a support group at our NICU. And I feel like I could have benefited so much again, from just being amongst people that you don't have to explain something to, I'll say this, there's a special bond between NICU parents and preemie parents that you don't have to explain something. It's just that everyone understands each other. It's an unspoken bond if you if you will, and to be able to feel like you can just talk to someone and explain that, yes, you're so thankful that you have a child, but you're also really scared and not get any feedback saying well, but you at least have a child. Yes, you do. But that doesn't take away how scary your experiences and to be able to feel supported and, and, and loved by people without judgment is really really important.

Jacqueline Kincer  43:38  

Yes. Oh, I couldn't agree more. I Yeah, it's that's the worst thing to hear is, you know, well, at least you have a baby. Okay. Well, yeah, I was kind of hoping it was gonna go differently. You know, and I have some feelings about that. Right. And it's, it's really, really hard, but I think it does take someone who's, who's really been through it right to get all of that nuance where you don't have to explain yourself to other preemie parents because they already know. And of course, there's, you know, so many different variations of having a preemie baby. But that community, that connection is so critical. I mean, I think that sometimes we forget with technology that we are social creatures, and that doesn't mean passively scrolling social media. That's not I don't know, I hate that word. Social media. It's like anti-social media, cuz you're kind of getting this like, I don't know, I think your brain chemicals are going, Oh, I'm interacting with people. No, you're not. It's one-sided. And it's not instant like you need to be able to have a conversation you need to be able to, you know, with the voice we can express so much more than we can the written word. I feel like so yeah, I love that. And actually, this is probably a good time to share this. So next week, you're hosting a NICU connection circle online. It's one Like folks, but it's not just liking a post on Instagram, okay? So I just wanted to, you know, share that because I think it's so important. And Jodi's hosting that, in fact, she's been so kind as to offer a discount code. So you can use the code, welcome 10. So the number 10, with no spaces for $10 off, it's just it's $25 Normally, so you can get it for 15 and be a part of that NICU connection circle, I would say, I don't know because I'm not hosting it. Maybe you can say this God. But if you just had a preemie born, if your preemie is a little bit older, maybe they're even out of the NICU probably is a great fit for anybody in that situation.

Jodi Klaristenfeld  45:42  

I would say wherever you are, in your journey, I have spoken to women who have teenagers. So you know, I think, whatever trauma or whatever you're experiencing, wherever you are on your journey, come join us and chat. Because everyone just wants to support everyone else, and tell them that they're doing a great job as a mom, and that everything they're doing is good enough. We don't tell ourselves that enough. And we're really hard on ourselves, all moms, quite frankly. And I think being a part of a group. And it is easier almost to be a part of a group when you don't know anyone else. Because there's no judgment. Everyone's just listening. And you'll be surprised I've done a bunch of these, how much people have in common, or how much people let their guard down and are really thankful just to have that sense of community that they have been missing.

Jacqueline Kincer  46:51  

Yes. And I don't want to take away your thunder. But this is totally going to back up what you're saying. So we've been doing posts on social media recently about preemies and newborns. And I just wanted to share a couple of comments from people that I was really, it was interesting to me that we got them because they're not followers, but people found our posts, you know, through the algorithm somehow. And like this one mom said 29-week preemie two pounds, 12 ounces, three months in NICU thinking the heavens each day, he's turning 20.

Jodi Klaristenfeld  47:22  

He's 20 years old. Like she's still responding to this post

Jacqueline Kincer  47:27  

connected with her right. And then someone else says, yep, for almost a year after I even knew what the potential outcome would be, and even anticipating everything doesn't equate to experiencing it. One of the hardest things to go through. But I'm so grateful for my daughter and all the NICU nurses who helped along the way. So you're later, right, and then here's another one. Let me scroll and find it. I was admitted. 30 weeks when my water broke, even though we knew you never really know until your tiny baby is there hooked up to all those machines, the doctor's rounds, beginning with a day of life count, and life being put on hold as you plan around feeding times. Even now, he's completely healthy and thriving. 18 months later, I still feel the strain of leaving him behind when I was discharged. Oh, girl, you got it. I don't know, I'm gonna have to message her. Like, you gotta sign up for this. You know, so this is stuff that doesn't just affect you while your babies are in the NICU?

Jodi Klaristenfeld  48:18  

No, I mean, I don't, I don't think it leaves you quite frankly, I think I we have a family friend who had a preemie and, and her daughter was getting married, like a few months after my daughter was born. And she wanted to come and visit me in the hospital and visit the baby. And she got into the room, started hysterically crying, and had to leave. And I understand that completely, even though her daughter is perfectly healthy and is now married. And it's still brought her back to those moments. I don't think it ever leaves. I think you learn like with most things, right? You learn to handle those emotions or deal with them. And, you know, to those women out there, I just want to say you're so much stronger than you give yourself credit for. You really, really are. And your babies are so fortunate to have you as their parents.

Jacqueline Kincer  49:29  

I love that. Any other. I mean, first of all, so much wisdom for anything in life not just having a preemie baby, but any other wisdom advice, you know, suggestions you'd like to share with our listeners who, you know, maybe going through this or have a while ago, but it's still something that you know, is very present in their lives for them.

Jodi Klaristenfeld  49:51  

I think a few things. One, you know, as moms in general society tells us we're supposed to be One way we're supposed to bond with our baby, is the minute we have it. And that's just not true for a lot of people, and, you know, cut yourself some slack, we need to be better to ourselves. So that then we can be better parents that pervades all parts of life. And I would also suggest that you know, everyone's growth and development is different. No two people are the same, like, no two snowflakes are the same. So as long as your child is trending in the right direction, that's okay. Right. But if you think something is wrong, at the same, at the same token, go with your gut instinct, and go seek out help from a provider. I think there's nothing wrong with it even if a doctor says to you, you're not, don't worry, this is completely normal. If it's something that's bothering you, advocate for your child, and go and find out about it. You have to take that on yourself because your child can't, for themselves at this particular moment in their lives. And again, to what I said about those women being stronger than you know, I think all moths are superheroes. We wear so many hats. And We just have to realize that the statement, it takes a village really does apply to all moms

Jacqueline Kincer  51:36  

wise words. Yes, it really does take that and, you know, speaking of villages, I would love for our listeners to be able to connect with you outside the podcast. So just real quick, let us know where people can find you. You mentioned FLRRiSH, you could just you know, tell us about that quickly as well.

Jodi Klaristenfeld  51:54  

So people can find me, online, www that FLRRiSH.com flrish.com They can also go to Instagram, LinkedIn, Facebook, tik, Tok at FLRRiSH FL R R i SH.com. Or they can email me hello@FLRRiSH.com. And again, you know, to all the moms out there, you know, I'd love to be able to help you out on your parent journey. I just want to help parents enjoy being parents, and there's nothing wrong if your child needs a little extra love and support. And please just, you know, spread the word because parents out there, do you need help?

Jacqueline Kincer  52:43  

Oh, yes, absolutely. So yeah, if you're listening to this episode, and you know, that would be helpful for someone else, maybe random on social media, or someone you know, personally, you know, definitely share it with them. And I thank you so much, Jodi, for, for sharing the amazing sort of lessons you've learned and the wisdom you've gained from your experience. And I really appreciate the work that you're doing to support other families who are going through something similar. So thank you for being here today.

Jodi Klaristenfeld  53:16  

Thank you. And I also want to thank you for the work that you do. Especially, you know, I was afraid to use a doula after all the stuff that had happened for me in the NICU, but I know so many people who have, and the work that you do is really instrumental and pivotal to some moms, being able to feel comfortable in their own skin, being moms and being able to give to themselves fully, whether it's nursing or even other parts of just being a mom. So I just want to say thank you to you for that as well.

Jacqueline Kincer  53:56  

You're the best Well, yeah, I hope that just you know, by bringing your voice to this podcast that, you know, together, we're doing some good work in this world for all those awesome families out there. So thank you, Jodi, and thank you, everyone, for listening.