Podcast

How Tube Fed Babies Can Become Independent Eaters with Jennifer Berry, MS, OT/L and Heidi Liefer Moreland, MS, CCC-SLP, BCS-S, CLC

  • WHY trust in the feeding relationship is so important regardless of whether baby is weaning from breast, bottle or feeding tube, and HOW parents and caregivers can help establish that trust with baby.
  • HOW families with babies on feeding tubes can be advocates for independent feeding and weaning off of the tube...even when the healthcare team may not be convinced weaning is possible
Katie Ferraro

LISTEN TO THIS EPISODE

Many babies on tube feedings can learn to become independent eaters. In this episode feeding therapists Jennifer Berry, MS, OT/L and Heidi Liefer Moreland, MS, CCC-SLP, BCS-S, CLC explain the challenges facing families of babies that rely on tube feeds for nutrition. They often face the realities of no exit strategy from the tube, lack of communication among the healthcare team and a misunderstanding of the developmental abilities and feeding needs of the individual babies.

Heidi and Jenny share how their intensive feeding tube weaning programs work. They talk about the important foundations of responsive feeding that can benefit all parents and caregivers, as well as the need to build trust in the feeding relationship and implement Satter’s Division of Responsibility in all stages of feeding. As feeding therapists Jenny and Heidi advocate for helping babies achieve feeding milestones, albeit with variability and starting where each child is at. They believe that the majority of feeding interventions should address the child’s skill, their need to overcome aversion and their ability to self-feed.

SHOW NOTES

Jennifer Berry, MS, OT/L and Heidi Liefer Moreland, MS, CCC-SLP, BC-S, CLC

SUMMARY of episode

In this episode I’m interviewing feeding therapists and specialists in feeding tube weaning Jennifer Berry and heidi Liefer Moreland. They’re sharing HOW babies on tube feedings can learn to become independent eaters, including:

  • WHY trust in the feeding relationship is so important regardless of whether baby is weaning from breast, bottle or feeding tube, and HOW parents and caregivers can help establish that trust with baby.

  • HOW families with babies on feeding tubes can be advocates for independent feeding and weaning off of the tube...even when the healthcare team may not be convinced weaning is possible

TRANSCRIPT of episode

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Jennifer Berry (0s):

The question that I give parents is ask yourself, is whatever I'm considering doing next, wheter it's a wean or a strategy or skipping a meal, or choosing a therapist is whatever's going on with that decision? Is it going to help my child understand food better? And is it going to help them trust food better?

Katie Ferraro (15s):

Hey, there I'm Katie Ferraro, registered dietitian, college nutrition professor and mom of seven specializing in baby-led, weaning you're on the baby-led weaning made easy podcast I help you strip out all the noise and nonsense about feeding. We can do with the confidence and knowledge you need to give your baby a safe start to solid foods using baby-led weaning. Hey guys, welcome back to another episode of the baby-led weaning made easy podcast. I'm Katie Ferraro. I am a registered dietitian and mom of seven specializing in baby-led weaning. And today we're talking about tube feeds. I know nothing about tube feeds like a long, long time ago I used to do home health to feeding pumps, setups for older folks.

Katie Ferraro (1m 1s):

So, when parents come to me and say help my infant or my babies on a tube feed, and I want to learn how to get them off of the tube feed, I went and found the experts in this area. So I'm joined today by two very special guests, Jennifer Berry and Heidi Liefer Moreland. They're both feeding therapists. Jennifer is an occupational therapist. Heidi is a speech language pathologists. They work with Thrive by Spectrum Pediatrics. They have a very unique tube weaning program that they're going to talk about, but they're also the host of one of my favorite feeding podcasts, which is called Tube to Table. They are so knowledgeable about all of the things that parents and families are going through when their babies are on tube feeds. And I think they do such an important job of filling the gap because so often parents go home.

Katie Ferraro (1m 45s):

They're by themselves. They're not sure is the baby going to be on the tube feed forever, or can we wean the baby off? Or how do we actually do the weaning process? And then how do we teach our babies to become independent eaters if they've had a history of medical trauma or perhaps in some cases, very severe allergies in the baby had to be tube fed? So, Jennifer and Heidi are a wealth of knowledge about all things related to tube weaning. They're going to talk about some really important concepts that are underlying concepts for parents and caregivers, to be aware of whether or not your baby's on a tube. The factors like trust and safety and hunger and the roles that all of these play as our babies are learning to eat. So I hope you guys enjoy this episode. It's called how tube fed babies can become independent eaters.

Katie Ferraro (2m 27s):

And again, I'm joined by Jennifer Berry and Heidi Liefer Moreland. They're from Thrive by Spectrum Pediatrics. Their program is the Thrive Tube Weaning Program and their podcast, which we'll talk a little bit about. And I'll link to in the show notes for this episode is called Tube to Table. If you want to find any of the resources that they're talking about in this episode, blwpodcast.com/50. Let's go ahead and get started with Jenny and Heidi talking about tube fed babies and helping them become independent eaters. Well, hello Heidi and Jenny. Thank you so much for joining me here on the podcast.

Heidi Liefer Moreland (2m 60s):

Hello!

Jennifer Berry (3m 0s):

Thank you so much for having us.

Katie Ferraro (3m 2s):

So, you guys have such a unique business, such a unique practice, and I can't even do it justice. I learned a little bit about the work that you do and how you help babies wean off of tube feeds and hopefully become independent eaters. And I was curious if you could maybe just introduce yourselves, tell us a little bit about your background, how you came to do this line of work, which is very unique in the world of speech language pathology and occupational therapy

Jennifer Berry (3m 27s):

Of course. So I am Jenny and I'm the OT of the bunch, the occupational therapist. And as an occupational therapist, I was trained to help children overcome whatever was interfering with their ability to do their typical activities that they needed to do to engage in developmentally appropriate play and activities, things like eating. And so I loved helping kids work on feeding. And the reason I got into this work specifically, we knew kids from their tubes and working with kids with severe feeding challenges is because I found that even though I went to a really great grad school. And even though I went to all the best continuing education stuff that I could get my hands on, the work that I was doing with the traditional approaches to helping kids ween just wasn't having a big impact on kids' quality of life or really getting off their tubes.

Jennifer Berry (4m 11s):

And so what I started doing was just looking at the literature about how all kids learn to eat in the best way possible and applying that to tube fed kids. And, you know, we've done a lot of learning and, and reading and educating and working with other experts. And that's how Thrive by Spectrum Pediatrics, our specialty division that has the two weaning program was born. And we mean kids all over the United States. We also work with kids that have severe feeding challenges of all sorts of varieties, and they either come to us or we go to them or we work with them remotely. And so that's how that happened. And then Heidi and I, we are so glad that we met this one family that brought us together.

Heidi Liefer Moreland (4m 46s):

So, I'm a speech therapist and I worked in the hospitals and I was really drawn to helping kids learning to eat, partly because it seems so clear-cut to me, unlike some of the language things for any SLPs out there, that'll make them laugh. Language is so complex and feeding at first seemed to me to be so simple and, and clear-cut, but then the more I got into it, the more I realized how many layers there are in learning to eat. And I was drawn again to working in this specific way with weenie kids. Cause I was running up against these kids that should have been eaters, but they weren't. And the two was the common denominator and I was really stuck with a lot of those kids and started to think through some of the things that were roadblocks.

Heidi Liefer Moreland (5m 27s):

And in that process, I had a family that found Jenny and what was sent in Spectrum Pediatrics and now Thrive Pediatrics. And that mom brought us together.

Jennifer Berry (5m 36s):

And from that, we realized that we didn't counter the same roadblocks and you know, Jenny had a lot of the questions and we just started working together and in that path. And so I've always been grateful that that family respectfully said, Hey, can you come see this? See what you think instead of just leaving, she brought me along and we really learned a lot and done a lot together, but it was the common question of why isn't this working for kids with tubes.

Katie Ferraro (5m 58s):

And I love that your practice involves a variety of different healthcare professionals. I think we're all in agreement. I'm a registered dietitian. This is so cool through a podcast, they get to speak to a speech language pathologist and an occupational therapist. We all have different skill sets, yet we all would be working together on the same team. If we're working with the family to help get the baby off of the tube, feeding and helping them become an independent eater. Now for our audience, some of the parents in our audience do have babies who have either been on tube feeds or who are currently on tube feeds, but for others, this may be a new concept. So, I was just curious if you guys could share a couple of reasons why a baby would need to be on a tube feed once they've been discharged, let's say from the NICU or the hospital, what are some of the medical reasons or family?

Katie Ferraro (6m 42s):

I don't know if there's maybe probably many other reasons why children would need to be on a tube feed. Could you explain that to us?

Jennifer Berry (6m 48s):

Yeah. There's so many reasons and we'd be happy to dive into some of them. Yeah. Some common ones are prematurity. Kids that are in the NICU because they were born prematurely, don't have the kind of motor capacity to keep, to protect their airway or to coordinate everything that needs to happen in order to, you know, suck, read, swallow, and do all of that in a way that is both safe and effective to help them grow during that really critical time. And so some kids get tubes from that. Other kids get tubes because they have a big medical diagnosis, like a cardiac defect or cerebral palsy or another very big medical condition where as they needed to grow at a certain rate and they were not able to do so orally because it was unsafe or also because a lot of these kids are put under a lot in terms of anesthesia for major surgeries and they just needed to be at a really healthy weight.

Jennifer Berry (7m 38s):

And then we have this whole other subset of kids that don't have a big, huge medical diagnosis, but might have something like reflux, which is serious. But also when managed properly, hopefully we can keep kids off of the tubes, but oftentimes when people don't get the support that they need and when families and teams can't work together in a way that facilitates that transition to healthy oral eating the tube becomes necessary. Sometimes it's just picky eating the majority of the kids that come to us have some type of underlying medical condition.

Katie Ferraro (8m 5s):

So, your practice is one that offers tube weaning services. And I think for some parents, they don't even realize that that's an option. So, personally, I don't have a child on a tube feeding, but I'm a dietitian. I remember doing home health, two feeding pump setups in the past. And the protocol was that the patient would go home and it was a regimen that was usually set by the inpatient hospital staff. And then the assumption was just like, oh, they're going to be on that forever. But in your line of work, tube weaning for babies is something that might start happening happening in the hospital, or is it done more in the home or how do parents find you and then figure out, oh my gosh, maybe my baby doesn't have to be on this forever.

Jennifer Berry (8m 38s):

Well, a lot of families come to us having had the tube put in and they believed it either because they were told or they assumed most families are told that it's just going to be temporary, the kids will get the hang of it on their own. And what we know is that when your nutrition is being met, whether it be by tube delivered nutrition or at the breast or at the bottle, we know that you're not going to be as motivated to do the other stuff. So, there's just like a natural reason why weaning doesn't take place. And then parents are left kind of stuck a little bit, right? They don't have the support that they need often. And then when they do reach out to get support, the majority of feeding therapists don't have any special training on tube weaning. And as I pointed out in our discussion earlier, like I personally in grad school was taught strategies that we would not apply to a kid that didn't have a feeding tube, things that we know are linked to negative relationships with food later in life.

Jennifer Berry (9m 29s):

And so we just need to be really sure that we're working with a team that kind of has that training and expertise because I think it's really lacking. So, parents find themselves kind of all they want for their kids is health, right? And they know eating is a part of that. And yet they look all around them and they can't find that help. And so, we really encourage people to keep asking the questions and to keep looking and finding someone in their area that has that experience or reaching out to somebody far away.

Katie Ferraro (9m 54s):

Yeah. And can you tell us a little bit about your program, the tube weaning program, how it works. Because maybe parents are in an area where they don't have a team that has, as you say, like a feeding therapist that has training into weaning, or maybe they didn't realize this was a possibility. You mentioned that people can find you and they can even work with you remotely. How does your tube weaning program work? Like the number of days in the evaluation, the intervention, follow up.

Jennifer Berry (10m 16s):

So the majority of kids that come to us need an intensive treatment. And so their parents have tried everything. They been through the ringer in terms of reaching out to different experts and they just can't get anywhere. And so, in that case, we schedule an intensive in-person support net. We either fly to them and wean them in their own home, or they come to near where the therapist is and we wean them in a rental home. But what the process looks like is we do an evaluation, it's all done remotely. You send us medical records, videos. We ask a bunch of questions, there's a questionnaire. And then from there we work with your medical team. So, we bring in your existing team, that might be your speech therapist. It might be your occupational therapist. You have a dietitian on board would usually want to communicate with them or at least get exchange records there.

Jennifer Berry (10m 59s):

And then we also have to have a medical professional onboard because once we can do some educating to the medical team about how to weaning happens best. Because most doctors, therapists, dietitians don't have that specialized training, so our job is to share that information. And then we come back to the table with the medical team and we say, all right, now that we're all on the same page about how this can happen and how this is important for their health to have it be a priority to get them off the tube. Once that's established and we work with the doctors to create safety parameters, and then the safety parameters are things we look out for to make sure during the intensive phase of treatment, kids stay safe. We prepare families really intensively. We have parents do online kind of courses with us.

Jennifer Berry (11m 41s):

They're discussions really one-on-one with a therapist. There's a book that comes along with it. We go through and do a lot of preparation, so that we're all on the same page. When the process starts right before treatment, we reduced tube to nutrition a little bit. And then during the intensive phase, which is 10 days, we're with parents at the table near the high chair in the backyard. Wherever the eating is happening or being tried, we're right there with people so that we can coach you through it. That's 10 intensive days with kind of really round the clock support. And then we're in close communication with the physician. If we need to be doing weight checks and all of that, we can do that. We're looking out for hydration. That's a really intensive and fun and challenging, but really rewarding period.

Katie Ferraro (12m 25s):

It's fun, you're like, I'm laughing because you're like, this is fun. I was like, I would be so, so scared as a parent, I can understand that the intensive period is probably more for the parents than for the baby in many cases.

Jennifer Berry (12m 33s):

Yeah. It is really intense and it is hard when your child needed a tube to stay alive or to grow properly. And then we talk about taking it away, it brings up all sorts of stuff for parents, of course. And so, that's another reason why you really want to be working very closely with somebody that can support you as well as your child. And then we follow people for six months. Our goal during the intensive treatment is to establish oral eating, but some kids still, most kids actually still require a gradual kind of reduction over the coming month or so of the tube feeding to get it gone completely. But during the following six months, our goal is to really help kids learn to thrive orally, not just learn to eat or kind of tolerate eating orally. We want them to become really competent and joyful eaters that have their own opinions about food, certainly, but we also want parents to feel really good about that.

Jennifer Berry (13m 21s):

So we're there for six months, should there be, you know, an ear infection that causes a regression or back to school that's really confusing or a transition to solids, whatever the case may be, we follow people for six months to make sure that the progress we've made in intensive work and the period following sticks.

Katie Ferraro (13m 37s):

And there's so many similarities, even though these, you know, if you take a neuro-typical child, someone who's not on a tube feeding, the parents still freak out at the six month mark, oh my gosh, my baby should magically wake up on their six month birthday and know how to eat. And that's not how it works. The six to 12 month period for children, not on tubes is this gradual progression of learning how to eat, where formula or breast milk is still providing most of the baby's nutrition. And in your case, the formula, the tube feeding solution is still providing the nutrition as the baby is learning how to eat, because they're not just going to magically get off of the tube one day. The weaning, I think we forget what the notion of that word is about as it's a gradual progression and it doesn't happen overnight. So, it's fabulous that parents have access to you for six months to go back to and say, you know, is this right, is that right?

Katie Ferraro (14m 21s):

Or this has been happening because it's not like an on-off switch, which I think sometimes a lot of parents think that's how it's going to be. And I'm sure there's many practitioners who might be perpetuating that idea. And it is, sounds like it's like a longer haul, but it can be done. Which kind of led me to my next question. I wanted to know if you could share some insights or stories from families that you've worked with, from babies who are able to wean off of the tube and eventually be able to thrive, which I love the name of your practice and being a child that enjoys eating. Are there success stories that you guys encounter?

Jennifer Berry (14m 52s):

Oh yeah. I mean, I think the majority of the kids that we work with, I mean, I know Heidi knows she's knee deep in the numbers as we speak, but, but yeah, the majority of the kids that we know, not only get off there too, but stay off their tubes. And so, we have several kids that come to mind. We have a little boy that we worked with about a year and a half ago who was on 20 hour continuous tube feeds. And he was really crushing it in terms of development and really making up for lost time at the medical crisis that his birth had caused. And he was told time and time again that he wasn't going to be able to transition because he couldn't tolerate bolus feeds and he couldn't do this. And we worked a long time with the team in preparation and we worked with them and he is like, the parents called us the other day and were just like, you know, they send you pictures of a kid eating his birthday cake or their children fight.

Jennifer Berry (15m 39s):

We got a picture once from a family member of like a kid crying at a table because his brother ate the last piece of pizza at a birthday party. Know those are the kinds of things that really come to mind where we had a kid that couldn't leave the house because he was vomiting several times a day and was constantly hooked up to a pump who now is like doing what all of our kids do, right? Like you want to eat the pizza or want to do that and have those preferences. And so it's really rewarding too.

Heidi Liefer Moreland (16m 3s):

I think some of the typical, one of the very typical kids that we see is, you know, the kids who have a cardiac diagnosis or a diagnosis of prematurity. And so these are kids who've really, I'll just use one as an example, because it's fun to hear specific stories, but she was born at 24 weeks. You know, the pictures of her, she would fit in her dad's hand when she was born, she weighed less than a pound. And she's not the only one who had that and, you know, heart surgery when she still wasn't even term yet just a lot of medical things. And she had no interest in food just didn't love it at all. And then finally, you know, her parents had worked through some of that and then she would eat food and spit it out. You know, she wouldn't swallow it. She would put food in, spit it out, put it was like watching a fountain would just go in and go out.

Heidi Liefer Moreland (16m 46s):

And we worked with her for, you know, the 10 days I actually went to her home and within, you know, it wasn't actually very long once she started realizing, oh my gosh, this is the way this works. She just loves eating. And it was in the three months, right after when we started that she, I have a picture I'm looking at right now, she's eating a giant bite of spaghetti and meat sauce. It's like, she just loves to eat and cries if the food is taken away from her, where before she would run around the room and they'd have to chase her to get her even at the table.

Jennifer Berry (17m 18s):

Can you share a little bit about the timeframe? Like we talk a lot about, you know, feeding milestones and parents, they see another baby doing X, Y or Z at six months or nine months or 12 months. And I would assume that a baby on a tube feed would be behind, of course, in achieving some feeding milestones because they've had some medical trauma or what have you, could you talk maybe just about the timeframe and when is ideal to wean the baby off the tube. And I completely understand that all babies are different, but I would assume it's easier at a certain age and maybe harder at a different age. Is that correct?

Heidi Liefer Moreland (17m 45s):

I would say that the number one thing is when they're ready, as soon as they're medically ready. As soon as things are stable medically, and they would be a safe eater on at least one consistency, is a great time to start working with the food. It's never too soon to make food feel safe. It's never too soon to let kids mess around with food and to really feel safe. And, you know, we can send a link to our treatment protocol that talks a lot about safety first and enjoyment first in the relationship. But the really ideal time that we've found is when it's developmentally appropriate for kids, it's easiest for those kids in between the say eight month and maybe fifteenth month timeframe is when kids are developmentally programmed already to be learning to eat.

Heidi Liefer Moreland (18m 29s):

And that's just the timeframe that it seems the most natural transition.

Jennifer Berry (18m 34s):

Yeah. And if your child is developmentally delayed, just to Heidi's point, like, so whenever they're kind of across the board in that timeframe developmentally. So, if they're doing motor milestones, like a eight to fifteen month old, if they're doing, you know, other communication types of things that are that's when we want to start thinking about that's the ideal time to be doing it. Not every kid is in that window when exactly eight to fifteen months after they were born. But when they're around that eight to fifteen month mark developmentally it's when it's ideal.

Katie Ferraro (19m 1s):

And are we talking, if we're talking an adjusted age or a chronological age, because you say, oh, there is never too early to mess around with food. It's like, well, I mean, our periods it's too early for them to swallow food.

Jennifer Berry (19m 10s):

I think developmental age development.

Katie Ferraro (19m 12s):

Developmental age? Ok.

Jennifer Berry (19m 13s):

Yeah. We would say neither, we would say developmental. So, if we look at a child's development, you know, as therapists, we're really, this is what we do all the time. We look at a child across the board and take a look at their development, like their motor function or their communication or their socialization, emotional skills. Those skills, you know, we have ways to assess where those skills are and around what month, you know, they're reflecting the child to be. And so we're talking about the window of eight to fifteen months developmentally. So, that's a really great point. I'm glad you brought that up, Katie, because it's just good to keep in mind. Sometimes people forget and they say, well, my kids too, they're still being a hundred percent tube fed. But if you look at the medical stuff or the developmental stuff going around, it's consistent, right.

Jennifer Berry (19m 54s):

They're not quite ready yet. Based on, you know, they had a really rough start and there's playing catch up developmentally. And so it can happen at different points for every kid, I will say our very strong opinion in all the kids that we see is that we really just wish the foundational work that needs to happen in terms of building trust, parent education about how this process goes. If we can spend a lot of times on getting kids to relate positively to food, to kind of help erase some of the trauma that might exist around food and feeding therapies, it goes a long way when it comes time to wean.

Heidi Liefer Moreland (20m 26s):

One of the other things that we see that gets missed a lot by medical teams, if they're the ones who are helping to make this decision is that many parents tell us that kids went through a period of time when they were interested in food. So, they either transitioned to that, or they remember a time when this happened, that they were interested. They tried it, they were doing some bites or, you know, just grabbing it more, whatever. So, when the child is showing some interest, they don't all do that. But if your child is showing some interest in it, that's a really important signal that they're probably developmentally ready to start doing some of that.

Jennifer Berry (21m 0s):

And if they're not, that doesn't mean that the process can't start it, it just, you know, that just don't miss that window. If there's, if that's happening for you and they're safe medically.

Katie Ferraro (21m 9s):

And that's all part of learning to pay attention, to and recognize your own baby's cues, which I think sometimes again, all babies are different and you know, your baby best. And then we have so many parents here that if their baby is on a tube feeding, you know, they have this glimmer of hope hearing from you guys. Gosh, my baby can potentially wean off of the tube or this thing I thought might have been indefinite that there might be an end to it. And I'm curious if you could just share some advice for parents or caregivers that are nervous to begin transitioning their baby off of the tube feet to solid foods. Obviously all parents are concerned about choking risk, but I would assume that that fear is probably escalated. If you've had a baby on a two feet who hasn't had the need to swallow or hasn't been able or allowed to swallow on their own, what do we say to parents that are really, really fearful and nervous?

Jennifer Berry (21m 52s):

I think It's normal to be fearful and nervous. First of all, you have every right to that because you've been through a lot. And so, the first thing is, you know, knowing, you know, there's so many parts of this parenting journey and especially for families of two fed kids, you know, it's normal to have those feelings. The other thing is that the nervousness usually comes from kind of that conflict. You want your kid to eat, you know, that they should or could, and you know, the tube's there and it's scary. So, just kind of figuring out where you are with that is really important. The next piece of advice that I have is that we have to just continue to ask questions of the current teams. Have you helped people successfully wean off the tube? If not, do you know anybody that has, do you have any resources that kind of questioning digging, researching is really helpful?

Jennifer Berry (22m 34s):

The most important piece of advice that we give to parents is don't engage in any strategy at home or allow your child to be subjected to any therapy technique that makes them not understand food, or that makes them not trust food or the people feeding. So, things like tricking rewarding, you know, doing that, switch it up, feeding things that they've already spit out, but they clearly have said they don't want, because what we know is if we want our kids to be successful eaters later in life, they have to have a positive relationship with food. And often for some reason, our tube fed kids, Heidi pointed this out in a beautiful quote that we've posted on social media. In the past that our tube fed kids are most vulnerable eaters are often subjected to these interventions or strategies that are the most damaging, that are linked to the most damage in terms of our health long term.

Jennifer Berry (23m 23s):

And so the question that I give parents is ask yourself is whatever I'm considering doing next, whether it's a wean or a strategy, or, you know, skipping a meal or, you know, work choosing a therapist is whatever's going on with that decision. Is it going to help my child understand food better? And is it going to help them trust food better? If the answer is, yes, go ahead. If the answer is no, or I don't know, pump the brakes and find a way around it, find a different strategy that the answer can be yes, too.

Heidi Liefer Moreland (23m 50s):

I think one of the other things we would say a lot is including your child at their comfort level. So, just having them at the table with the family while they're eating, even if it's for a short period of time for kiddos who are young and don't have a long attention span, just helping them to see that is working towards that, letting them smell, you know, the food or hang on to it with their hands or accepting baby steps, accepting what your child shows you that they're comfortable with is a good start. It's a solid foundation. And as parents, I think it sometimes feels like there's a trick. I think as professionals have sometimes made us feel like we're the keepers of the knowledge, but parents know their children and including them and engaging with them in a safe and fun way is a great start.

Heidi Liefer Moreland (24m 34s):

It doesn't need to be professional tricks, you know, just including them.

Jennifer Berry (24m 39s):

We as professionals, can't do our jobs without parents at the helm. And if you're not feeling listened to or heard, that really is an important piece of advice. Katie, I wonder if it would help for us to just talk about like the two most overlooked pieces.

Katie Ferraro (24m 51s):

Yeah please. I'd love to learn what I mean, I could talk to you guys literally for days, but I would love to know again also where our parents can go to learn more about your practice because there's a lot of parents are like, whoa, wait a minute. This was never even mentioned to me. And I want, you said most of your referrals come from parent to parent, which I was surprised to hear. I thought like, oh, well just be pediatricians who say, I don't know anything about tube feeding, referring to you, but it's parents to parents. And where can the audience go to learn more about you guys, but also share with us what are the common things that are overlooked because you guys see this every day.

Jennifer Berry (25m 19s):

Yeah. So, in addition to kind of make sure, making sure that there's trust and understanding, and that we never do anything to compromise the relationship between a parent, a child or a therapist or a child, you know, keeping these, these really healthy boundaries with child autonomy at the center. The other most important overlooked thing is that we really need kids to learn how to eat for internal reasons. So, there needs to be an internal drive to eat. If we expect it to be lasting and healthy in the long run and the internal drives to eat that gets skipped are curiosity, hunger, socialization, togetherness, novelty, that curiosity that happens at the table. Those are the natural drives. Eat, not Elmo, iPad a reward. And not that listen, we've all been there. We've all tried those strategies too, but we know if it's going to work in the longterm, we need to focus on the internal drives to eat.

Jennifer Berry (26m 4s):

And people often get confused that hunger is the magic bullet. And so I just thought I would leave us with this one last thought again, I'm a big fan of Heidi and the work that she does at Thrive by Spectrum Pediatrics, but she has this great expression about the swimming pool that expecting a child to learn to eat without being hungry is like expecting them to learn, to swim in a pool that doesn't have water. And so we do need to work safely with parameters from the medical team to how much hunger is okay and safe. But we need to make sure that we're putting in a pool with water, that it isn't natural to learn how to eat without trust, safety and hunger. Those things have to be there. Those internal drives to be are super important and protective for the, of our lives and the water itself doesn't teach kids how to do it.

Jennifer Berry (26m 47s):

So it's just kind of the place where it takes place. So if you skipped a meal here and there, or even done some more than that and your kid hasn't magically learned to eat, you're not doing it wrong. It's just that we really need to do a little bit of, you know, focus on the relationship with food probably first and then start uncovering some of those internal drives to eat and the skills come.

Heidi Liefer Moreland (27m 6s):

You know, this is why we love baby-led weaning so much Katie. Is because that same swimming pool concept, learning to swim on the deck is a little bit like learning to eat food when you haven't had that experience. You really need to acquire those skills gradually. And we do use a lot of the kinds of strategies because of baby-led weaning, because that gives kids the ability to develop the knowledge and the feeling and the, the whole applied reason for eating, as opposed to exercises that don't include food that aren't eating, don't get at the same thing as it does when you're actually eating. So that's why there's such a great overlap and why we're so excited to talk to you about ba-led weaning. Cause it really does. It relies on the same principles of learning.

Katie Ferraro (27m 48s):

And I think even parents with children who don't have tube feeds can identify with all of the things you're saying, like you were mentioning the book. I was like, I think all parents need to read the book where they learn more about the division of responsibility and feeding in the ideas of trust and learning about our bodies. And also, I really appreciate that you guys are talking about hunger. Parents are so scared to let their babies feel hunger, and we could do a whole separate episode on that, but I loved what you said what you said there, that it’s trust, safety and hunger. And those three things need to be working in unison in order for the baby to have the interest and the desire and the ability to learn how to eat. So, thank you guys so much for sharing all of your information. Tell us where we can learn more about your practice, about the tube weaning, about your podcast.

Katie Ferraro (28m 29s):

I mean, you guys are a wealth of knowledge in this area and I want everyone to know where they can find you.

Jennifer Berry (28m 34s):

So ,thank you. We're so glad to do this. We can be found on Instagram @thrivewithspectrum. We can be, if you just search Facebook for Thrive by Spectrum Pediatrics, our website is thrivewithspectrum.com and we also have a podcast that you can listen to wherever you find your podcasts and it's called Tube to Table. And it really breaks down the process of weaning a child off of a feeding tube. One step at a time. So give us a follow. If you have any questions, we'd love to answer them and good luck on this journey.

Katie Ferraro (29m 4s):

And I will link to all of your resources on the show notes for this episode. So, if you guys go to blwpodcast.com and you type in tube feeding that will pop up and we'll send you all of, to all of their resources, because I think it's so important, the work that you're doing, because you're bringing in all of the different aspects that really can help facilitate success in feeding. And so many parents have only heard, like, it's the tube that's going to feed your baby for the rest of your life. And you guys are really doing amazing work to help parents learn how they can help their babies become independent eaters. And thank you so much for taking your time to come here and to explain a little bit about your work. I can't thank you enough.

Jennifer Berry (29m 39s):

We're such big fans of yours. Thank you for having us, Katie.

Heidi Liefer Moreland (29m 42s):

Thanks for having us.

Katie Ferraro (29m 43s):

All right. Bye now.

Heidi Liefer Moreland (29m 44s):

Bye

Jennifer Berry (29m 44s):

Bye guys

Katie Ferraro (29m 44s):

Well, I hope you guys enjoyed that interview with Jennifer and Heidi, all about their thrive tube weaning program. They have a lot of amazing resources. They mentioned their podcast as well, their Instagram, they've got great information about the tube weaning program. If it's something that you're considering, they work with families from all over the country and all over the world at this point. And you can check out all of the resources that Heidi and Jennifer spoke about. If you go to the show notes page for this episode, which is at blwpodcast.com/50, again, blwpodcast.com/50 to learn more about Heidi and Jennifer and their thrive tube weaning program. Thanks so much for listening.

Katie Ferraro (30m 24s):

Bye now.