S7 Ep8 Transcription

Season 7 Ep 8
•• Please note that this is a computer generated transcript and there are potential errors.

 Navigating Pediatric Feeding Disorders with Feeding Matters 

Intro: [00:00:00] Welcome to the Dear NICU Mama podcast. Our mission is to connect the past and the present NICU mom by bringing them out of isolation and into a sisterhood of women who can stand alongside each other as we heal and grow both in and out of the NICU. Our hope is that through interviews with trauma informed medical and maternal mental health experts and vulnerable stories from NICU Mamas themselves, That you would feel connected to the dear NICU mama sisterhood around the world. So whether your NICU journey was 50 years ago, or whether you find yourself in the NICU today, we hope that this podcast reminds you that you are not alone.

Martha: Hey friends, and welcome back to the Dear NICU Mama podcast. It's your host, Martha. And.

Ashley: Ashley!

Martha: Ashley, I just texted you, but I think that it's a shame that our listeners can't see your face today because your face framing bangs are hitting so [00:01:00] cute. I have face framing

Ashley: I just saw the text. Your face framing bangs are amazing. Video proof right here.

Martha: I have those, but it's just continued postpartum hair loss.

Ashley: Oh, I have those too. You just can't see them as well on the camera.

Martha: Okay, we'll make sure maybe we can post that in the Facebook group, like everybody share your best hair loss stories. So this is great.

Ashley: I say let's go for it.

Martha: Well today is going to be so fun, um, because we have not one, but two expert guests today on the podcast.

Martha: Um, We talk all the time about all different things that are affecting the NICU community, and we've heard loud and clear that one of the biggest issues that are ongoing for current NICU families and NICU graduates is pediatric feeding disorders. And that is such a big, big topic. Um, so we, when we kind of talked about this, one organization really stuck out and became, became highly recommended by a lot of our team members.

Martha: And that [00:02:00] was Feeding Matters. So today we have Jacqueline Peterson and Jen Lambert from Feeding Matters all to talk about their organization, their work, and pediatric feeding disorders. It is a big, big topic. So thank you so much for being here.

Jen: Thank you for having us. Yeah. Yes.

Jaclyn: Excited to be here. Thank you for having us.

Ashley: I feel like the topic of, the topic of feeding starts so early on in the NICU and then it never ends. Like, when you're in the NICU and you get to like what they call the feeder grower, right? And I remember the, the NICU nurse saying, now this is when it gets hard. And I was like, what do you mean? And she's like, well, you're just kind of waiting for them to want to eat.

Ashley: And I thought that that would end when you're discharged, but my son is going to be five and we're. still working on eating. So, so I'm excited to have two experts like yourself that can kind of walk us through so many of the different feeding routes that we, that we run into post NICU. And what better timing considering that it's the [00:03:00] holidays and all we do around this time is eat, so.

Martha: Yes, yes, this is true. And here, um, you know, unsolicited thoughts from extended family members about our child's or children's eating habits. That's always so great. 

Jen: Yes.

Jaclyn: I think that's what becomes the hardest part about this time of year is if you're on a feeding journey that isn't what you pictured. It can be really challenging to be dealing with that while also hearing all the. I mean, well meaning thoughts, but thoughts that hit really hard. 

Martha: Yeah.

Ashley: hmm.

Jen: both have first hand experience with this because we each have two children and they were both born in the fall. So it was at the time where holidays were starting to happen. There is a lot of discussion around food and family coming together around food and family coming together around mealtime. So we, we get this.

Jen: around food and family coming together around mealtime. So we, we get this.

Ashley: Yes. Awesome. Well, I'm excited to dive in. Martha, do you want to kick us off with the introduction question?

Martha: Yeah, let's start, if you could both introduce yourselves and talk a little bit about feeding matters and why it's so important.

Jen: I can take this one. So I am Jen Lambert for all of you out there. I'm the director of programs and events with Feeding Matters, and I've been with the organization six years. I always worked in the nonprofit sector, so I always heard about Feeding Matters and the work that they were [00:03:00] doing.

Jen: And what was always so exciting is that I was always hearing the great strides they were making. So this organization was founded in 2006 by Shannon Goldwater, who had preemie triplets. And so Shannon was in and out of Arizona, she is from Arizona, trying to find the support that she needed. And as many of us know, it's very, very hard to find.

Jen: And especially that social emotional support. So, Shannon. And some other families actually were able to get together and form a group called Popsicles. So Feeding Matters was formally known as Popsicle and evolved over the years into Feeding Matters. Um, what I had heard in working in this sector was the work that Shannon was doing along with these families and creating the Infant and Child Feeding Questionnaire and making sure that PFD was a standalone diagnosis.

Jen: So I was hearing all of this going on and then this position opened up at Feeding [00:04:00] Matters and it really brought my love of children, feeding, health, education together. And I thought, Oh, this is the perfect fit. And that's how I involved. I, over the years have worn many different hats. So I have always been involved in our programs and our family support, but I've also had oversight of our international pediatric feeding disorder conference, our volunteers, I've moved more into looking at our target markets and where we're starting to see things bubble up because even though we were founded in Arizona, we have a national and an international presence.

Jen: So a national reach, I should say. So we're looking at where those states where we're seeing more come up in terms of volunteers. Conference attendees, families coming to us for support, partnerships with other institutions. And so I've been working on creating these councils within those states and, and doing more of that grassroots effort in terms [00:05:00] of outreach.

Jen: So that has been exciting because every year it's been something a little different and I've got to experience every facet really of this organization and see the growth that has occurred.

Jaclyn: Yeah. Thanks, Jen. And I'm Jacqueline Peterson. I am CEO of Feeding Matters. I have been with the organization for over 10 years, but I came into this position in the middle of the pandemic during, uh, May 2020 was when I came into this role and it taught me a lot. So much about what we are trying to be for families, you know, families are at the heart of our organization We work with professionals.

Jaclyn: We do a lot of advocacy and awareness and outreach but families are what we feel is the most important and we want to be there for families and Being at this organization for 10 years, I was single when I started and now I'm married and have two kids and just, uh, I have an almost one year [00:06:00] old who actually, um, struggles with some feeding too and probably diagnosed a mild PFD in our future that we're still working through. Don't that's us.

Jen: And then just, uh, my NICU connection is with my, um, my son, who's now a year old. We spent some time in the NICU, and having some of this information, and working, uh, about feeding and working for Feeding Matters really helped our journey, because it's one that is difficult to navigate, and feel for so many families.

Jen: And now, being in the NICU, I mean, my heart just breaks. I, uh, it was so hard. seeing a lot of these families who don't have this information going in there day to day and trying to have these conversations and advocate. And so , it's a real struggle. And being in the NICU, no matter how long you're in there, it's very taxing and it's a very difficult experience.

Ashley: Yeah, absolutely. So if you had to give like a [00:07:00] two sentence mission statement of what Feeding Matters does, or how you guys serve families, what would that be?

Jen: So I would say it's hard to do and that's what we struggle. We struggle with a lot is condensing our because there is so out there. But essentially, we are a nonprofit that is raising awareness and uniting healthcare professionals and families. And we that through advocacy, research, support and education.

Ashley: I think you did a great job. That was fantastic. Check.

Jen: Thank you. Thank you.

Martha: As fellow people working in the nonprofit sphere, we know that's really hard. What do you do?

Jen: It is.

Martha: say it immediately in one breath. Yes. So

Jen: Yeah, I know. And anytime I meet someone, I just want to tell them everything. And I constantly have to check myself and say, Jen, You don't even know where they're at with this. They may be like, what, what is PFT? What are feeding concerns? I don't even have a [00:08:00] child of my own. I don't know what this means, so.

Ashley: right?

Jen: Yeah, I have to myself.

Martha: actually a great segue because I think for a lot of people, like there's this concept of What I have never heard of PFD, right? We're talking about getting it. Uh, it's like kind of a new diagnosis in the medical world. It might be new for medical providers too. So what types of feeding struggles kind of are classified and fall into this big category of pediatric feeding disorders?

Martha: Hmm.

Jaclyn: So the way that we and we actually were the ones to gather everybody together to define this and name it and declare it a standalone condition. And it's because of just that, you know, our agent shared our founder story. We were hearing feeding problems, feeding struggles, difficulty feeding, failure to thrive, growth faltering, all of these terms that just described similar things that our children were having trouble feeding.

Jaclyn: And

Ashley: Mm-Hmm.

Jaclyn: to pay [00:09:00] attention to something or hard to have credibility for something that just is described as that, this offshoot, that like they're premature, they're going to have some feeding struggles. Um, and it doesn't. honor how hard the journey is around feeding. And so we got together professionals from across the world to say, you know, let's name this.

Jaclyn: What is it? So they named it pediatric feeding disorder. It's when a child is not really eating appropriate for their age. So think, you know, if I'm taking a child to preschool, I need to be able to tell the preschool teacher. what to do with my child because they eat differently than their peers. So it's just not eating appropriate for their age and maybe has dysfunction in four domains.

Jaclyn: Is there something medically going on as to why we can't eat or why we're a little bit delayed in our feeding development? Is there something with their feeding skill? Can we chew? Can we swallow? Can we do all of the things that it, we need [00:10:00] to, to be able to get the food to our mouth and eat and take it all in?

Jaclyn: And then nutritionally. If we are only on a diet of chicken nuggets, because that's the only food that we're comfortable with, like we were, we're still falling behind. And then psychosocially feeding is involved in every single aspect. We all bring our own relationship to the feeding journey. We all have our own relationship with food.

Jaclyn: And, um, there is such a relationship. between the parents and the caregiver and the child too. And so there's just so much involved from a psychosocial aspect, not only of what the child is experiencing and their mental health and what they're feeling around eating and feeding times, but also the parents and caregiver and the entire family unit.

Jaclyn: And so that's what they did. They declared this a standalone condition. We helped them advocate to the CDC to say, let's, let's, You know, it, it needs to be its own diagnosis, um, which we were able to get through and you're right, we're still trying to raise awareness that this is a [00:11:00] standalone condition and that we need to help families be aware of what the journey ahead might look like, um, especially after the NICU, that just because we're going home on oral feeds, doesn't mean that we might have a long feeding journey.

Jaclyn: It took, it took anybody three to seven years to learn how to eat. And so if there's any disruption in that process, it takes even longer. And sometimes I feel like our healthcare professionals are not sharing with us what to expect in terms of how long the journey might be.

Martha: Eye opening, by the way. I feel like I've learned more in the last two and a half minutes about feeding. Three to seven years? Oh my gosh.

Jaclyn: Yeah. I mean, you think about, so like, typically it's Till age three is when you start, you start to expect a child to eat age appropriate food at the table, table food. They can do their own things, but then those years between like three to elementary school age, like you're not given a [00:12:00] steak to a three year old and just letting them cut it, need it on their own.

Jaclyn: So, um, yeah, I think we forget how long our journey is without anything going wrong in terms of learning how to eat and that if there is any delay or if we had, if we had this. start of life in the NICU, then we need to have a little bit more scaffolding around supporting feeding.

Ashley: And so you guys said that you advocated for this. So when was this officially declared as the PFD?

Jaclyn: So October 20, 2021 was when it was a standalone condition. So it's still a very new diagnosis.

Ashley: gonna say, that feels like kind of crazy that that's been just diagnosed as that. I think of all the families before then who didn't have any of this.

Jaclyn: yeah.

Ashley: That's crazy.

Jaclyn: they're getting failure to thrive diagnoses and they're getting, you know, just offshoots of symptomatic feeding problems because of so many other diagnoses. And there are [00:13:00] 300 comorbidities to PFD. But treating PFD as a standalone condition allows us to be comfortable with it and know that this is a real condition and the fight that we have as parents is real as well.

Jen: Absolutely. And that there are four domains, because rarely do we see that a child is just falling within one of those domains. There is multiple going on at that same time. And I mean, a testament to Shannon's story, that's why she, she was having a hard time getting that support and finding the services that she needed.

Ashley: Mm hmm. Wow. I'm just so baffled by that. I mean, that was just like two years ago, basically.

Jaclyn: It's still very young and, and, and people ask us all the time, how many, how many kids have PFD? And it's like, well, the diagnosis has only been around so we can't actually pull data. But we can configure it and say that it's, um, it's more than 1 in 37 children. [00:14:00] But in, in special populations or populations with chronic health conditions, it's more than 3 in 5 children that have PFD.

Jaclyn: And in the NICU, it's over 42 percent of children in the NICU. And I, I wonder if that's actually maybe a little bit higher than that.

Jen: I, yeah, yeah.

Ashley: Wow.

Martha: there's such an uphill battle, like there's a couple, at least two generations of medical providers, right, that are still in practice right now that have never heard about this. So I'm sure part of this is, how do we educate the people who are the first line who see these families and can help support them?

Martha: And that's, I know this isn't a question we had written down, but how do you even approach that challenge?

Jen: So there's a number of ways, and this is a challenge we hear over and over again, right? Um, because there's only so much education that physicians receive around feeding. And even when you bring your child to a well child visit, it's a 15 minute visit and there's [00:15:00] rarely enough time to talk about feeding.

Jen: And I know in my experience, a lot of the questions have just been around. nutrition and is your child eating certain foods? And then that's pretty much it. Or has your child taken the bottle or been introduced to solids? And then the conversation ends there. So there's, there's so much to be done when it comes to outreach.

Jen: That's why I said we're really looking at... the grassroots level. So we're doing a lot within those target markets. We have P. F. D. Awareness Month, which is a national campaign. And we talk about P. F. D. I mean, we talk about P. F. D. All year long, but we go hard in May. We we have a lot of educational opportunities or international pediatric Feeding Disorder Conference is a great time to have individuals come together from around the world to talk about PFD and to identify where those gaps are and how we continue to support the community.

Jen: Um, I mean, really, we have such an amazing group of [00:16:00] volunteers. We could not do the work that we do without our volunteers. We really, we, we can't, and those individuals are such champions. for PFD and for feeding matters and continue to spread that message.

Ashley: Hmm. I love it.

Jen: Mm

Ashley: beautiful. And we agree, volunteers literally keep an organization afloat. So

Jen: They

Ashley: we, we echo that same thing. So can we then maybe talk about what types of feeding struggles fall under that umbrella of pediatric feeding disorder and, and how have you seen that link between the NICU babes that you work with?

Jen: Yeah. So, as Jacqueline mentioned, I mean, really, there, there's a wide spectrum that falls under that PFD umbrella. It's if a child is not eating, age appropriately, what we see within and from personal loss. experience in the NICU is that you're talking about [00:17:00] feeding a lot when you're in the NICU and then it's, you know, you get discharged and those struggles continue.

Jen: But it's hard because I don't feel like you have that same support in place that you do when are in a setting where you have health care professionals around you all the time. You're talking to people rounds. You're, you're having those, uh, occupational therapists or speech language pathologists to be your sounding board.

Jen: So, it's tough because those children get discharged and either there is follow up with feeding, that parent may be advocating and talking about it, or it just, not that it falls off the radar, but You're, you're not talking about it as much and then it rears its ugly head years later. And then we see children being admitted at five years old or six years old and, and seeing more of those struggles continue as they grow up.

Jaclyn: Yeah. And I [00:18:00] think, what I've seen is that the conversation in the NICU is let's figure out what, what feeding parameters we need and what our feeding plan is. And then like Jen's saying, it's just kind of that drop off. Um, but we, we see over time is there's those transition points. If breastfeeding isn't going well and we do bottle feeding, that transition is a little clunky or we go from bottle feeding.

Jaclyn: to solids, and that transition is a little clunky and there's not a lot of support in those transitions, and it's just monitoring weight. And so one thing that we really talk about is It's more than just the weight. A child may be gaining weight, but it's what is mom most often doing to make sure that their child is gaining weight.

Jaclyn: Are they up all night long, feeding them an ounce at a time, two ounces at a time to make sure that they're staying on that growth curve. And that's the conversation that we need to have. And there's not always space to have [00:19:00] that in the appointments that exist right now, um, to really dive deeper and see, you know, Yeah, they're gaining weight.

Jaclyn: They're on the, they're on their version of their growth chart. What are we doing to get there?

Jen: That's exactly right. It is. And it's in the NICU. It's so volume driven. I felt like that's where all we were talking about was, was that piece of it. Whereas I was, I knew a little bit more and I could talk to some of our healthcare professionals and some of those experts in the field to say, okay, what are those interventions?

Jen: What does positioning look like, for example, I want to breastfeed. So I had to really. push for that in the NICU and to say what does that support look like after I am discharged? Because I am going to need help with this. So much is thrown at you in the NICU. It is not just feeding, right? That's just one piece of it that it is hard to absorb.

Jen: all of that information. You are running on fumes. You, I mean, it's impossible to take that all in and remember it. [00:20:00] So, um, to, to Jacqueline's point, yeah, it's more than just even that weight gain. I, I often told the team, my husband bought a scale and was weighing our son every single And I told him, put that away, it is slippery slope, put it away, because it became obsessive.

Jen: I mean, was charting everyday, sharing an app, and saying, oh my gosh, this is happening, what do we do? And I said, I think there's other indications, other things we need to be looking at, rather than his weight. So, I can see how parents get so fixated on that, and how that drive so many of their decisions.

Jaclyn: And, um, and conversely too, I think a lot of parents we find that reach out to us are really trying to avoid a feeding tube. And that's The, the main concern is like, let's avoid the feeding tube. I'm being threatened with the feeding tube. Um, it's a, it's a, such a scary decision to know what to [00:21:00] do on whether you, use the, the tool that a feeding tube is or not.

Jaclyn: Um, but for the right scenario, it's a lifesaver and it allows you to take that pressure off because while. It may be working feeding around the clock. There's so much anxiety and so much stress that we don't want with feeding around that and that's not to take away if that's if someone's decision is to not do the two, but um, we really try to help families understand that it can be a tool and can make It takes that pressure off a little bit, so then we can have a better relationship and set mealtimes up for lifelong success.

Jaclyn: We're really trying to think about the long term outcome.

Ashley: yeah,

Martha: is incredible, especially, um, I can think of, you know, a couple examples with kids specifically around the tube, uh, to with people that we know and love in our community and one, um, they were on tube, it had the G tube removed, um, but [00:22:00] then put it back in and it actually was a way that they were able to overcome, um, a seizure disorder was by getting on top of that, right?

Martha: For another family, they were on the two forever, kind of made some different holistic changes, and then they were able to get off and found success in that. So I love this idea for the moms listening of looking at the holistic picture and guess what? Your social emotional health is part of that picture and is really important.

Martha: Um, And Ash, maybe that's a good place to, to end this thought with maybe like a, an ask for a, maybe a line of encouragement of how moms can begin this journey of self advocation.

Ashley: mhm Yeah.

Jaclyn: Yeah, I would say to any mom out there listening that feels like they are in the throes of feeding and doesn't know where to turn, um, it sounds like you have a great community here, um, with your community. But know that there are others out there. Um, we offer parent support programs. We offer a lot of information [00:23:00] and resources on our website that help support, uh, a lot of the conversations around feeding.

Jaclyn: And I think it's okay to be honest with yourself about where you're at in the process. Um,

Ashley: Yeah.

Jaclyn: It's okay to not know.

Jen: It is. And you are not alone. 

Ashley: Yeah.

Martha: I'm

Ashley: I Have one question that maybe we don't have to include in the actual recording, but I'm actually just curious. So we all know that depending on your provider, if it's a provider that works with you or a provider that maybe has a little bit of pride on their shoulder, that, you know, How receptive do you find providers are to a mom coming in with resources like yours?

Ashley: Like, hey, I've read about a PFD. I'm concerned about this. These are some things I'm looking into. Like, do you find that providers are receptive to that? Or is there a way that a mom can partner with your guys resources and their pediatrician to ensure that their concerns are being heard? I mean, [00:24:00] what has that been like in your guys experience? Both of you are giving me a look right now.

Martha: The lips are cursed. The eyes are knowing. That's all I'll say.

Jen: You know, I've, I've heard it all and I want to stay positive because recently I have heard more individuals saying when I have brought this to my physician, it has been more well received or they wanted to learn about pediatrics. feeding disorder. However, we do still have those families that are not heard and that is really tough when they're wanting to start this conversation.

Jen: I would say there are a few tools on our website that we always have, we refer families to or suggest and encourage that they use. We have our infant and child feeding questionnaire, which is a screening tool that families or healthcare professionals can fill out to identify if there are any red flags when it comes to child's feeding.

Jen: And so that's a great way to begin that [00:25:00] conversation. And it's, um, it is a tool that could be used by both sides. Jacqueline,

Jaclyn: Yeah, I think, I think it's a good way to disarm the conversation because I think oftentimes if you're a parent coming in with all this, these resources, this information kind of coming in hot, um, there can be maybe barriers or guards put up for a certain type of like professionalists or, um, and so I think using tools that we have in approaching it like a. tool to have a conversation is probably the best way to go about it. Uh, the way we describe it, even when we're handing it out to providers, is to say, oftentimes, families don't know how to describe what's happening at mealtimes. They don't know how to articulate. How challenging feeding is. This is a tool to help you use the same language and to help you communicate.

Jaclyn: And so I think that's definitely a place to start to say, Hey, I was referred to this. It [00:26:00] allowed me to kind of put down what I've been trying to tell you. And so, do you mind if we look at this together? Um, I think another way is like, I've heard this new diagnosis. Have you heard anything about it? More of an inquisitive frame.

Jaclyn: Um, might be another way to go about it. Honestly, too, if you're continuously not feeling heard, um, it's, it's okay to, to know that and to be open to seeing if you can be heard from another provider too.

Jen: Definitely. There's also on our website, um, some resources that could be used around what questions to ask and how to bring it up to certain healthcare professionals. So whether you're meeting with your physician or you're meeting with, um, an occupational therapist, an RDN, a speech language pathologist, there are certain questions we put together tailored to, to those different disciplines.

Ashley: [00:27:00] Yeah. So, I've heard you guys say, also, thank you for answering that question. That was perfect. Um, I've heard you guys mention, like, the challenges of eating. So, could you give me a couple examples of what those challenges might look like? Is it, like, sleepiness at the bottle? Is it, you know, you mentioned, like, irritability throughout the day with feeding?

Ashley: Like, what are some common challenges you see that might be helpful for parents to take note of?

Jaclyn: you mentioned, uh, you mentioned a lot of them. Um, I think, and especially the infant population, we do want to pay attention to how baby looks and is feeling at mealtimes. Um, you want to pay attention. So blue lips, falling asleep at the bottle, feeling listless, like those are all really big warning signs that we've got to pay attention to if something else is going on.

Jaclyn: Um, another thing to pay attention to is time. So is feeding time less than five minutes? Is feeding time more than 30 minutes? We want to kind of stay in that spot of five to 30 minutes because either of those times are saying, [00:28:00] uh, baby's not even able to get enough or it's too hard to, to feed. And that's why it's taking so much longer.

Jaclyn: Um, I think if your baby doesn't appear hungry or is, is showing you that they're not interested, um, in the bottle or food. Those are big signs, um, you know, really paying attention to your intuition. Is it feeling off to you? Um, that's another, there, there are many different that it looks. And so it's not just like one size fits all.

Jaclyn: This is a PFD kid. Um, unfortunately, because it is so multifaceted, because it is so complex and across all the different domains, it could be lots of vomiting. Um, that's definitely a big sign. What's the bowel situation. Is constipation present? We need to look in deeper there. Um, are they drooling, um, while they're trying to, [00:29:00] to, to drink the bottle or breast?

Jaclyn: Uh, so there's all of those things that we kind of need to, to pay attention to, but I think you're not alone in that either. Like that's, we have a part of the, one of the resources that Jen mentioned is, uh, Those six questions. But then on the back, it's like, are these signs and symptoms present? And kind of check all that apply.

Jaclyn: Um, and that can be really helpful to, to orient yourself and know if what you're seeing is just in your head or really what you're seeing.

Ashley: that's awesome.

Martha: So

Jen: I know something that was, oh, sorry.

Martha: no, I was just gonna say, um, I think that my kid had this. I, you were describing all this stuff and I was like, uh uh, that is all my kid. Um, so it's just crazy because I think in a lot of people's heads we're socialized to be like, some babies are just colicky, some kids are just picky eaters, right? So this idea of, you know, You can trust your intuition and you can ask for support and health if it's really hard for you, if feeding time is a struggle, if you [00:30:00] feel, if you know that your baby isn't getting the nutrition or the feeds that they need.

Ashley: Mm hmm.

Martha: Sorry for interrupting you, Jen. I was just like, I need to talk to my pediatrician.

Jen: Well, and, and Martha, this is what we find so many times when we are doing this sort of thing or doing outreach and talking to people. That they say, oh my gosh, I think my child had this. We experience these same things, and I, we just went through it. We just ourselves up by the bootstraps and said, we're gonna move forward, and go through this, and in our feeding felt, you know, we thought was normal.

Jen: We hear this all the time. Mm

Ashley: Yeah.

Jen: hmm.

Ashley: and then you just kind of like,

Martha: Oh, sorry.

Ashley: well, he was a reflux baby, so he was like the 30 minutes held upward after a feed, you know, or upright, I mean. But I think, Like, it kind of goes to what we talked about in the beginning of, like, because your child is a NICU grad, you just kind of, like, put that, you put them under that [00:31:00] umbrella of, like, well, feeding is hard because he was in the NICU, so I just have to endure it and hope for the best

Jaclyn: just kind of

Ashley: because it makes sense.

Ashley: Yeah, exactly. But then there wasn't that follow up that you guys provide of like, well, there's options and there's a way to support you doing this feeding experience and feeding journey. So then not only are you healing from your NICU experience, you're like begging in the middle of the night that your baby will just eat a bottle or, you know, that you can go from micro preemie to the preemie nipple, you know, on the bottle, like all of those

Jen: That's exactly right. I don't, I don't know, you know, as you've talked to others in your own personal experience, but I almost felt like after we were discharged from the NICU, it was all a blur. And I really didn't feel what or processed anything until months afterwards, months. And there were many times where something would just trigger me around feeding and I would just cry.

Jen: And it was just such a surreal feeling because I, I was just in this mode of, [00:32:00] let's get through it. Let's just move forward. I just want him to get to a better place. And I wasn't really even able to process everything that was going on in the NICU. And then also with his feeding.

Ashley: Mm

Jaclyn: Well, yeah. And honestly, the research supports that because I think as parents, we figure out what we need to do to keep our children growing and thriving. And it's maybe any combination of like rocking for hours on end, holding upright for 30 minutes, anything like that. And, and then. Time goes on, you start to process a little bit more, and what we're even seeing in the research is Families will kind of need the initial stuff right when their babies are young, but then they kind of in the middle Figure it out, and they're growing okay, and they've got their bottle system set up or their breastfeeding system set up and then Um, and then it starts to the the solid foods and may not be going well, but we're kind of pushing it off.

Jaclyn: But then we hit the year birthday and I think that is a [00:33:00] pivotal moment in time for so many families to realize where they are at in their feeding journey. That it is now a time where we've got visions of a smash cake that won't happen, or we've got, you know, we now need to start weaning off the infant formula and figure out what our new setup is.

Jaclyn: And the year milestone is a very big one for families because then we start to need to realize. We've got to be paying attention to this

Ashley: Well, and you said a word that can be a big trigger, and not that you said it is triggering, but I'm saying this word of thrive, right? Thriving. And when it comes to feeding, there's this term called failure to thrive, and you touched on it earlier today. And many, of us in the NICU community have had that written on our charts to describe our children.

Ashley: And it's offensive for so many reasons. One, I'm like, um, have you seen what they've [00:34:00] overcome already? Like I would consider this a success. Like we got out of the NICU, but now my, my son or daughter has this note on their chart that their failure to thrive. And so, what does this mean? And how can we support ourselves and our kids that all of a sudden have this failure to thrive diagnosis on their chart?

Jaclyn: I honestly want to call it growth faltering instead and I know a lot of

Ashley: I like that!

Jaclyn: have switched to that term Because it takes it's such a blame Focused diagnosis and I think that's how it's heard. Um

Ashley: Mm hmm.

Jaclyn: It's our role as parents to be able to help our children thrive. And when they can't, it feels like we're the failure.

Jaclyn: And so to literally call it failure to thrive, that hits so deep. And then it does no one any good, because what you're really trying to say is this infant is having trouble growing growth, faltering, [00:35:00] and we need to figure out. Why and how to support them and how to make sure they're gaining the necessary weight so that they can grow.

Jaclyn: Um, so I just am, I guess that's just my thoughts on the

Ashley: I love that thought!

Jen: It is. It's, it's a very triggering term for our community to go back to your point. I'll give you an example. We wanted to use the word thrive in an event name. And so many of our families said no, that term. You know, there's just a feeling that comes up. It evokes a certain feeling when we hear that and it goes back to that, the conversation we had earlier about it being so weight driven and looking at those growth charts and it almost feels a little antiquated, right, in using that.

Jen: So, um, I mean, I know you're all saying the same thing, but it is something we do see and hear from our families often.

Ashley: hmm. 

Jaclyn: and I would say anyone that [00:36:00] does have that diagnosis, I think it's important to be aware of pediatric feeding disorder. and make sure that the person that gave you that diagnosis is aware of Pediatric Feeding Disorder 2. Sometimes professionals need to read other journals and so maybe it's just sharing the journal publication with them because it's not you, it's like, here's a bunch of other professionals, your peers, talking to you about this condition, um, because it mentions it in there, which says that like, we're, you know, we're looking at this through a single lens and we need to be thinking about it holistically.

Ashley: Yeah.

Jen: Mmhmm.

Martha: I also just want to call out that there is an overlap to, you know, we hear a lot in our community of, uh, you know, mental health struggles and, uh, you know, trying to heal post NICU and oftentimes that presents itself as intrusive thoughts, right, about not being the best mother for our babies, even though that's the furthest thing from the truth, but there's no convincing ourselves when you're in the middle of that little cycle, right?

Martha: So I think a lot of these people, there's this kind of fear about, um, Um, If my baby [00:37:00] doesn't hit this chart at when I go into the doctor's office, they, they're going to find me out, right? Or something like that. It'll be my worst nightmare will be proven. Um, and we hear that a lot too. Uh, so I really appreciate, uh, your, your kind of reiteration that.

Martha: The parents are and the caregivers are a part of this holistic cycle because you have to be a healthy well parent and you deserve to be a healthy well parent so that your child can be the best baby they can be. That's part of their well being too.

Ashley: Right.

Jaclyn: And honestly, that's why I think a feeding tube sometimes is the right scenario. If you're

Ashley: Mm hmm.

Jaclyn: But if you're up all night long because you're trying to avoid it, and it's, it's just this weight on you, it's a weight that can be taken off and in the right scenario, of course, but yeah, definitely, um, families know best.

Jaclyn: You're at the meal times, you're feeding your infant or child all day long. A [00:38:00] physician or provider or therapist may just see one or two feeds. It's not

Jaclyn: that they are there the entire time

Ashley: Well, and can we then fast forward a little bit? I know you said that like three to seven age or year range is kind of like that feeding window. and so what other, , Habits or occurrences during feeding.

Ashley: Would you encourage parents in that like year three to seven window? So maybe they're done on bottles. They're introducing more of the solid foods, you know What types of things do you encourage parents to look for when they're in that range?

Jaclyn: I I sorry

Jen: go

Jaclyn: This is what i'm passionate about Um, so I think I think the one to three window is actually like a critical window To be able to identify if there is something going on oftentimes that is a gap That is so easy to say they're picky Just keep trying. Let's wait and see that. And then it gets kicked to after three, we're now facing a bigger issue.[00:39:00] 

Jaclyn: Um, because after three, that's when we start to get more of our psychosocial impact in, in the mealtime. And so by this point, our, our three year old has already learned to be anxious around food , that some food may not feel well. And so that's ideally why if we can catch it before three, that then we can set ourselves up for success, but there are so many families that are only just now realizing at, you know, ages three through seven, that they're that we need some other supports in place, because they've just been called a picky eater.

Jaclyn: And honestly, we've even seen it older, we've had, you know, Like a 67 year old call us and say I think this was me and I've just been called a picky eater my whole life um So there's there's approaching mealtimes from like a no pressure side of things And really trying to put some of those strategies that we all see on social media every day but I would say if you're feeling like You're [00:40:00] trying those things and it's not working or mealtime, which is always feels like a constant struggle.

Jaclyn: Let's just try to dig a little bit deeper and find out if there's something going on or honestly, if you've even been in feeding therapy for a while and it feels like you're not making progress, let's try to see if there's something else going on that hasn't been identified.

Ashley: Yeah, that's so good. It actually, when you mentioned that, it reminded me of my son because he just had his tonsils out at age four. But leading up to that, feeding was tricky because his tonsils were so large. And even after surgery, I think I just expected for him to magically want to eat all the time. I was like, Oh, the tonsils are gone.

Ashley: He's going to be like, wow, I have such a big hole in the back, you know, but we're still navigating those same issues. pre surgery, because like you said, they've kind of built that habit of like, oh, this is what feeding feels like. This is what that is like. And so that actually makes a lot of sense that those feeding issues didn't just necessarily disappear right after surgery.

Jaclyn: And I mean, hopefully over time he [00:41:00] learns that, that, that, that, that it can feel okay. Um, but yeah, honestly, I'm glad you found the tonsils. Sometimes those go missed even later than

Ashley: Yeah.

Ashley: Yeah. My husband actually has a speech pathology degree, which is so random because he doesn't use that degree now. But one day he goes, he's cheeking his food. And I was like, excuse me? He's like, he's cheeking. Do you see how he's holding it in his cheeks when he eats? And I was like, I never noticed that.

Ashley: But because of his speech pathology background. So that's how we brought it to his pediatrician. And then sure enough, the wheel kept turning. But we had so many people that would say, you just wait. the day after he gets those tonsils out, he's going to be eating whole steaks or whatever, you know. And I remember thinking like, oh no, did it not work?

Ashley: And now we're like, definitely, we've seen a lot of improvement. It's improved significantly, but it wasn't like an instant fix. It still took time and therapy to get to where we are today.

Ashley: So we kind of touched on it initially, but [00:42:00] we talked about how feeding is such a cultural thing and it's such an emotional thing, especially around the holidays.

Ashley: And one thing that we talk about often as our kids get older is that they maybe don't eat the same way as their peers do or their cousins do. Um, we get those comments from family of like, Oh, they should be eating that food by now. Why aren't they eating that? You know, or why do you have to cut their pieces so small?

Ashley: They're like, you know, that kind of a thing. And so what encouragement would you give to families who find themselves on that feeding journey during a time when food is everywhere and you're still trying to navigate how your child eats amongst all of the cousins, aunts and uncles, and a lot of unsolicited opinions.

Ashley: Mm

Jen: I mean, I would say first, uh, stay true to yourself, listen to your gut. There's a lot of noise and there's, there's always going to be right, whether it's feeding, whether it's their development, whether if they're walking at, you know, whatever it is, there's always that noise there, but [00:43:00] trust what you and your partner, whoever it may be, or trust those decisions that you make and also realize that there's other ways to celebrate these occasions and these holidays.

Jen: besides just the food aspect of it. So I know for a lot of our PFD families, they try not to make that central focus the food. So there's other activities that are going on or spending that time with your families and amping up the kids in the family that way than just saying, oh, it's Thanksgiving.

Jen: And that's all we're talking about is the turkey and the sides and all of that that will be there.

Ashley: Right.

Jaclyn: Yeah. And I think having the conversation ahead of time too, I mean, especially as our kids are getting older, they're paying attention to the conversations. That they're hearing grandma and grandpa say about how they're eating and that's not helping anything. And so I think if possible and everybody's relationship is different, but if it's possible to do any prepping Before, or even having a safe space if you're going to someone else's house, uh, [00:44:00] before, then that can go a long way too.

Jen: Yeah. I think it goes along with the question that you may be posing after this about what advice do you have for individuals, but it goes along with this question in Always continuing to have that conversation with those around whether it's your friends, your family, your healthcare professional. I kept that line of communication open, and it's a tough conversation to have, but it's really important to have.

Ashley: Yeah.

Martha: actually, you know, it probably is beneficial to everybody because in general, we talk about in culture about how comment on each other's bodies and how we eat quite a lot. And so we can be part of the change makers for our kids to write in terms of that social emotional piece.

Jen: totally agree with that.

Jaclyn: For sure. It's not just PFD families. And we have, there's so much that comes with all feeding journeys and how we all feel about food. And you're right about everybody [00:45:00] needing to think about how we comment on people's bodies or what they eat. It's a lesson for all of us.

Martha: Mm hmm. 

Ashley: Absolutely.

Ashley: I have a friend whose son has, um, pretty significant sensory, um, Um, and I think it's really important for people who are listening to this to understand that there's a lot of people out there who have concerns when eating or issues with eating, and she shared the story of how one of her best friends makes sure to stock all of his favorite snacks and foods so that when he comes over, he has his, like, go to's, and I think, too, for anybody that's listening that's maybe a loved one or a dear friend of somebody you know who has children with feeding sensory issues or a PFD to ask them, okay, if they can't have the turkey, what can they eat?

Ashley: How can I support you and have those snacks and foods on hand? And that's just a way to show an extra dose of love during a really tender time too.

Jen: Absolutely. such, yeah.

Martha: I feel even so silly asking this question because the whole episode has just been nuggets of advice and encouragement, but say somebody, um, You know, was just starting to either enter this journey to [00:46:00] understand, um, PFD or maybe they're like us. And then we're realizing, oh shoot, I need to talk about this with my, my pediatrician because my child is, has these things and we're still working on it at age five.

Martha: Right. Uh, what encouragement would you give them at the beginning of this journey? Knowing that there's going to be ups and downs as there are with any element of parenting.

Jaclyn: I think one is taking it slow. Um, I think so often we want to like jump in and make all these changes and then we can convince ourselves that this one thing that changes is going to make the world of a difference. Um, but it's okay to go slow. It's okay to pause. Uh, you've got a process while you're supporting your child through this journey.

Jaclyn: And, um, you know, using your supports are important. Finding out the information you can is important. Asking the right questions to the right providers is important. Um, but don't have an expectation of yourself that [00:47:00] it's going to go a certain timeline or this one thing is going to make, this is going to be your magic silver bullet. It's a hard journey and...

Ashley: Mhm.

Jaclyn: a, it's a long one and that's why you just need people to talk to about it, a safe place to talk to about it.

Jen: Yeah. And we do, I mean, when that family may be ready, we do have support services that we offer. One of them being, our Power of Two program, and that is our peer to peer mentorship program. So we have family coaches, ones that have been through this journey, may still be in the thick of it, but they are matched with those individuals that could be brand new to this, that could be realizing, oh wait, there have been feeding issues or struggles going on for a long time, and now I'm just finding feeding matters, and we match them.

Jen: It's someone outside of their network, someone outside of their family, their health care [00:48:00] team, their friends that is able to offer that social emotional support and it's really whatever works for that family. It could just be them texting once a week, it could be a phone call every day just as a check in.

Jen: It's, you know, we meet that family where they're at but it's such a powerful program.

Ashley: Yeah. That's incredible.

Jaclyn: And we're here for both of you as you're figuring this out

Ashley: Ah.

Martha: Thanks guys.

Ashley: Yeah, I'm like, hmm, I might need to take that little quiz

Martha: I know. Good opportunity to go to feedingmatters. org today.

Ashley: So, speaking of that, how can moms connect with you? Where can they find you and how can they find your resources?

Jen: S So Martha, that was a nice plug. Our website's a start right there. We also have, um, if you visit our website on the navigation bar, there's an area for support, so families could go there and then you'll see our number of family support programs. There's a way to email [00:49:00] us directly and we can call you back.

Jen: We can match you with the coach again. whatever meets the needs for that family because it's not a one size fits all, right? So some families may not be even ready to hear the term PFD. Some families may be, I want every resource there is. So there's a of things to find on our website. We also have the PFD Alliance app.

Jen: And so if you download that app, there are areas, there's channels for families to interact, healthcare professionals, and then Both. So there's ways to post questions in there and talk with others within this community.

Ashley: Amazing. Well, you two are remarkable. We can feel the passion through the webcam the way that you guys both light up when you talk about the work that you do and the families that you serve is really remarkable and, um, I don't want to speak for you, are so grateful that your resources exist.

Ashley: I know we're both [00:50:00] thinking of our own children. , I'm thinking of so many friends in our community who have been to multiple feeding clinics and, and advocating and advocating and advocating. And just to know that there's a, a safe place of solidarity for them is really remarkable that also provides them with tangible resources.

Ashley: So we will definitely make sure to link. all of your resources in the episode description and in the blog post here so that they can connect with you. , but to all of our moms listening who may find themselves on a feeding journey or may find themselves wondering if they should be on a feeding journey, we want to just reiterate that, , your child is thriving because of you.

Ashley: No matter what a medical chart says, know that your child is a wonder and that we are incredibly proud of the strides that they have already overcome. And I'm going to stop talking so I don't lose it, but we love you. We love your sweet babes and we're so proud of the mountains you guys have been climbing.

Ashley: So thank you Jacqueline and Jen for being here today and for the work that you do.

Jaclyn: [00:51:00] Thanks for having us.

Outro: Thank you so much for listening to this week's episode of the Dear NICU Mama Podcast. If you loved this episode, we'd be so grateful for a review on any of the podcast platforms. And we'd love to continue connecting with you via our social media pages or a private Facebook group. And ultimately, NICU Mama, welcome to the sisterhood.