Heartfelt Insights: Navigating Pediatric Feeding Challenges

Brianna: Hello, hello, and welcome to The Feeding Pod. This is your host, I'm Bri, Brianna Miluk and I am a speech language pathologist and certified lactation counselor. I specialize in infant and medically complex feeding and primarily see patients in the home health setting, although I do have some that I see as an outpatient or via telepractice.

I'm also an instructor at the university level and a PhD student studying communication and information sciences. I have a huge passion for evidence based practice and supporting information literacy in speech, language, hearing, feeding, swallowing sciences, specifically as it pertains to social media and translational research.

This podcast is meant to share anything and everything related to being a pediatric feeding SLP, feeding therapist, with sprinkling in a little bit about working in academia, [00:01:00] being a PhD student, and how to access, appraise, and implement research into clinical practice. Now, some episodes may contain guests, and I'm already looking forward to some of those coming up, while others might just be me rambling about something that's been on my mind. Regardless, my goal with this podcast is that you walk away not just with newfound knowledge, but with the inspiration to think critically and not be afraid of research.

 So, without further ado, let's get into today's episode.

 In today's episode I am so excited because I have Karli Negrin with me and she is just one of those humans that you're just so thankful to have met. She's incredible, wonderful, so passionate, so kind. She's the type of person that just wants to elevate others and that just shines through.

And so I'm really excited because in the episode that we recorded, you are going to learn about cardiac feeding. And we're really gonna [00:02:00] talk about it through the lens of somebody who is Right there firsthand, but providing insight and input for EI and outpatient SLPs and really talking about what are the things that we think about in pre op, in post op, what are the things we think about when it comes to 

feeding, swallowing expectations, and managing expectations, and also knowing when to pause and stop. So, I'm so excited because I cannot wait to dive into this episode and for you to listen to it and hear this because Karli is just incredible and yeah, let's get started.

Welcome back to the Feeding Pod. I am so, so excited today because I have one of my favorite people here today. I have Karli with me and she is a speech-language pathologist who does a lot of clinical and research work with congenital heart defects, and I'm really excited for her to talk about it and share her expertise.

And [00:03:00] so. Karli I'm going to pass it over to you to kind of give everyone, like, the quick intro to who you are, give us some clinical background, where you're at, and then we'll dive into the topic. 

Karli: Well, first of all, thank you so much for having me here today. I am a super fan of yours. Also, you're on your eras tour right now.

Are you going overseas, for some clinical education? 

Brianna: Yes, I am. I leave literally from where we're recording this. I leave in a week to go to Australia and then New Zealand.

Karli: Okay, I feel like you're on your ERAs tour, which I'm also going to follow, I'm going to follow that on social media. Love it. So a little bit about myself.

My name is Karli Negrin and I, , specialize in cardiac feeding disorders, , and have been practicing in this little niche of speech language pathology for nearly 20 years. And that ages me a little bit, but nearly 20 years really specializing in CHD. And I've had the wonderful opportunity of, , really watching this field [00:04:00] grow and develop, , over time.

And I am part of some organizations that are really dedicated to. Watching the cardiac neurodevelopmental field grow. One of them being the cardiac newborn neurodevelopmental network, which is, which is really cool. It's like a grassroots group of therapists and clinicians that are really trying to understand CHD.

So I am one of the leaders in that organization and really just dedicated my life's work to understanding how the heart impacts feeding and swallowing. And I'm so happy to be here today to talk about my passion for this topic. 

Brianna: Yes. I'm so excited to talk about this with you because it's a topic.

I think that, you know, like you said, it's kind of like, The niche that you've spent so much time in, but if you work with feeding and swallowing in Children, you will come across it like this is something that you're going to touch as a clinician in [00:05:00] some capacity. And so I think that, you know, hopefully, this is a really good topic for many clinicians, regardless of the setting, because you're going to get it.

a lot of information on that. So let's just kind of like a little bit of background congenital heart defect 101. 

Karli: Okay, I love it. So first of all, just to kind of mirror what you said, you're going to run across this disorder practicing in the pediatric feeding disorders arena because it is the most common birth defect impacting our communities.

One in 100 babies each year are born with CHD. So chances are you have a baby or a child who has been impacted by CHD on your caseload right now. I know you do. 

Brianna: Yep. Yeah. Yes. Yeah. 

Karli: Yes. And the, the really challenging part about this science is that it's in comparison to other sciences, such as the science of prematurity and the science of cancer [00:06:00] disorders in children.

CHD is a new science in comparison to that science. 

 And so Just imagine how science is trying to catch up to how new the feeding disorders are associated with CHD because it's a new science. The surgical science is new. And so we're just now starting to understand how the heart impacts feeding.

Brianna: Yeah. I mean, Thinking through that, the medical advancements that have been made so that these infants and children can live and thrive.

And I think that, you know, you said it so well with like, okay, priority one survival now we get into like, okay. They've, they're surviving or like they're prepping for surgery or you know, it's like that, that time in between surgery one and surgery two, or we're done with surgery, but there's still some other things going on.

And then that's where we come into play, where we say, okay, well, how is this maybe affecting [00:07:00] feeding and swallowing? And so, you know, I think when thinking about this population, you had mentioned how it's. You know, 1 in 100 children are born with CHD, so you're going to come across it. So when we come across a child with CHD or, you know, in preparation for like, I want to work with feeding and swallowing disorders, you know, what do you recommend that we're aware of kind of a base level, or where should we kind of start with if we want to learn more about this topic as it relates to feeding and swallowing?

Karli: I'm so glad you asked because I think that when I listen to other clinicians talk , when these big cardiac terminologies such as tetralogy of fallot or common AV canal you know, transposition of the great artery, all of these, CHD birth defects come on, we kind of freeze as clinicians being like, this is over our head.

So I'm hoping today to simplify it for you. This is the algorithm [00:08:00] that I teach new clinicians that I'm working with on the basics of understanding CHD. So first of all, let's just take you through congenital heart defects. Forget the words. Forget VSD. Forget ASD. Forget Tetralogy of Fallot. Forget these words.

Let's just take them off the table. 

Brianna: You hear those words as a new clinician and it's like that's a pretty big one. 

Karli: Yeah. Yeah. 

Brianna: Let me, let me go figure out what that means. And I feel like when you, , just do the basics, like, googs, you know, you get on Google and search it, it's still not clear. 

Karli: Correct.

Brianna: It still can be confusing. So I'm excited for you to, to share how you teach it. 

Karli: Okay. So , the basic science of this is that you either have decreased pulmonary blood flow, So that means there's a deficit of blood flow from the heart passing through the lungs, which makes the infant blue or cyanotic.

So not enough blood goes from the heart to the [00:09:00] lungs, or you have too much blood passing from the heart through the lungs. So, too much blood is going to the lungs, and that makes the baby breathe really fast. So that's what we hear of cyanotic versus acyanotic. But the science of it is, how much, is there too much blood going to the lungs, or is there not enough blood going through the lungs?

That is the science. the simplest part of that. Now, there's other, there's other categories of heart defects, such as obstructive heart defects and then single ventricle heart defects. But most of those are really caught early on because these babies are really having severe problems after birth and you're, they're kind of on a path to take care of those.

So speaking towards our community based providers, think about the cyanotic and the cyanotic defect. And then I'm going to even break it down for you even further. We're going to talk about today in three places. You are either pre op, [00:10:00] post op, or you're getting stage intervention.

And if you could just say, okay, is this a baby that has too much blood flow going through their lungs? Or not enough blood going through their lungs? And are they pre op, post op, or , in their stage interventions? I'm going to walk you through how to manage these babies. 

Brianna: I love that. I love the, the, the very, Simple breakdown and I, you know, I don't want to say it's like a simple topic, right?

It's simple, but it's not easy, but the simple breakdown of it I think makes it manageable like we can take that information say, okay A, B, where do I think about with C? Or like, B and B, where do I go from here? I'm like, picturing this beautiful flowchart in my brain. 

Karli: I'm obsessed with algorithms. I love algorithms.

I love it. 

Brianna: Yeah, I'm like, oh my gosh, it's like, I'm like, okay, if I go from here to here, then I think about this. So, let's kind of take that, that next step then. So, if we're thinking about You know, translating that into [00:11:00] questions we ask when we're thinking about feeding and swallowing. Where do we go from there?

Karli: Okay, so we're speech language pathologists, or we work in feeding and swallowing. Get back to feeding science. So, I'm going to ask you, if somebody has too much blood flow to the lungs, they are breathing really fast. Really fast. You're going to implement the interventions. We know a speech language pathologist that helps when a baby's breathing too fast, you know, we know those interventions And so then we put our speech pathologist brain on and we we really focus interventions on that now if a baby is having decreased blood flow to their body or they are cyanotic.

Imagine this, imagine that the oxygen is not being delivered into the extremities of the body. And one of the extremities going down and going up, one of them is the brain going up, [00:12:00] and then on the way down, it's the gut. And so we find a high incidence. of gastrointestinal complications or neurodevelopmental delays in infants with these cyanotic birth defects because these organs are not getting the oxygen you need.

So taking that back to feeding science, how would you treat somebody with a neurodevelopmental delay? How would you treat someone with gastrointestinal complications to feeding? And that's the nuts and bolts to make something really complex, very simple. 

Brianna: Yeah, that makes complete sense, right?

When we break it down to say like, okay, increase blood flow to the lungs. increased breathing. So we're working a lot harder. What are some of the things we're thinking about? You know, we're immediately going to like fatigue and the effort that is going to be involved in the feeding. And so what do we do?

Where, where do we go from there? And also thinking about how, how is this child feeding at this point? You know, because the intervention will [00:13:00] slightly change depending on if they're feeding at Breast or bottle, or are they also getting some from a feeding tube? Are they, you know, depending on their age, do we have, you know, the, I'm like, there's so many directions we can go, right?

Like, are there comorbidities? Are they also premature? Are they also, you know, something else going on that we add in there? But I love that, like, simple breakdown of like, okay, just start here, and then we go from there. Because I think sometimes we get caught up as I know I do, you know, do the same thing.

You get like this very, very complex case and you're like, Oh my gosh, where do I go from here? Or, I've never heard of this diagnosis before. Or, I don't, I don't really, you know, understand what this means. Or like, oh, only three people ever have this diagnosis. And it's like, okay, but go back to what you know.

Go back to the foundations of the anatomy and the physiology that gets us to where we want to be. 

Karli: Exactly, exactly. Now I'm going to actually go into the concept [00:14:00] of something I like to call pockets of oral feeding experience. And this is a coin that myself and one of my colleagues, Hema Desai, have coined in that I want to Let you know what makes babies with heart defects a little different from some of our other populations So in most populations feeding is linear.

It follows a curve You might have little bumps in it, but it's it's linear or progressive with babies with CHD Feeding may not be linear As a matter of fact this population has significant ups and downs, and I like to explain it this way, have you ever played the game shoots and ladders? 

Brianna: Yes, yes, I know that game.

Karli: Yeah, and so I think of Chutes and Ladders and Candyland. So Candyland, like, okay, you might get stuck and you might do these, like, there's these little slides [00:15:00] backwards on Candyland. You might get stuck, but you're, you're kind of going forward. Our babies with CHD tend to have feeding progressions.

and then really feeding regressions. And I'm going to explain that to you. I'm going to break that down to simplify that for you as we go along. When we talk about those pre op post op and interstage and we're going to really dive into those, but the term pockets of oral feeding experience is really a way to think a little bit differently about babies with CHD, because you have to figure out where.

they're at in this progression, realizing that not only are you setting up for progression, But you're also preparing for regression, and I'm going to dive into that a little bit more when I talk about caring for your pre op patients, not only are you trying to progress them, but you're also catching them for the regression.

And I can't wait to dive into that. Should we go into that? 

Brianna: Yeah, I [00:16:00] love that. I love that approach to it. And I think that, you know, further emphasizing it is the fact that like. We have, you know, the pre op, post op stage interventions, but we might have pre op, post op, pre op, post op. Like, we might even have repetitions of the same thing in there.

And the way that we prioritize our care, and the way that I know, like, you know, speaking for me personally, I think about things as like, okay, You know, we have habilitative, and we have compensatory, and when is the time to do which? And then, when does it become rehabilitative? Because of that regression, and kind of working through there.

So, With all that being in mind, let's start with kind of like the initial outpatient pre op and the kind of baby has gone home from the hospital, from the CVICU, you know, they have made their way home without a surgery so far. Where do we go from there? 

Karli: Yeah. So [00:17:00] like you said, the baby has gone home and for whatever reason, surgery was not recommended at that point.

One of the reasons why surgery is not recommended is for this reason. They want that baby to grow so that their chest is bigger and that their body is bigger so that they have a better chance of survival. Now think about this, literally that baby's whole job is to grow and eat. in order to get a life saving surgery.

What kind of stress does that put on this parent and this family? Literally their job is to grow. And so I think where the challenge is, is that these babies get a lot of pressure to do that when in fact they have a lot of things against them and we can talk about some of the things against them.

One of them is called hypermetabolism. And so As, [00:18:00] as you know, when you do cardio workouts at the gym, you look like a person that works out. I don't, I don't know, but you, you look a little muscular. 

Brianna: I do jump rope. I picked up that skill this year. I've been doing jump rope tricks and rope things, so. 

Karli: Okay, I highly look forward to that making its way on your Instagram page, please.

Brianna: I'm probably like a year out from that, but it is quite fun, it is quite fun. 

Karli: Right, and so when you're doing this cardio 

Brianna: That gets my heart rate up. 

Karli: That gets your heart rate up and the reason why we do that is, well, for me, I'm hoping to burn calories. I want to get my heart rate up to burn calories.

And so these babies have their heart rates up and they're breathing, they're breathing really fast and they're in an aerobic activity. So they have, even their resting. The rate is burning calories. And so that's one of the challenges. Their job is literally to feed growth and they're burning calories.

And so what do we do? [00:19:00] We fortified their feed. We stick extra, extra calories in this baby to fortify their feeds. And what does that do to the baby? It really alters their. Natural satiation and it's like we're pumping these babies up with all of these calories to help them feed and grow, but then they don't desire to eat.

And so one of the things that I really stress about at this point, and I'm speaking specifically to my outpatient and early intervention providers right now. It's a tough job. You not only have to manage expectations of the family who are undoubtedly going through a very anxious and stressful experience and feeding is going to be hyper focused on.

Hyper focused on by the family, hyper focused on by the medical team, like weight checks are going to be occurring at a rate that does not occur in babies who don't have [00:20:00] heart defects with a baby that's just set up to burn calories. And so when you're dealing with a pre op patient in the outpatient, my advice to you is to manage these expectations.

Brianna: No, I love that. And I think, you know, as a provider who primarily sees patients at home, you know, I'm the outpatient EI provider. And one thing that I also noticed that comes across as this barrier is the family. And that's why I'm so glad you said manage expectations because I think it's not just within ourselves, but also within the caregivers, right?

Like, so yes, we need to manage expectations of the caregivers of like. what's going on and the challenges in the situation for the infant. But I also see this like what's the word that I'm looking for? It's like, battle's not quite the right word that I'm looking for, but families that come where they're anxious because they know that their child needs to feed and grow.

But also if this is an infant [00:21:00] who also has a feeding tube, then they are also in the situation of like, but I kind of want to get rid of this feeding tube. And it's really hard to manage this idea of. We may not be in a position to wean the feeding tube right now, because, you know, we're really thinking about tube weaning, like medical management is a huge part of that.

We need them to be in a position where they can manage it. And so sometimes there's this dynamic of trying to say like, priority one versus two. And our role is managing those expectations, making sure that mealtimes remain as positive as we can. Because I think the other part is why by pushing the fortified feeds or if it's like, Oh, I don't know that they're tolerating it fortified.

So let's just increase volume. Then sometimes you also get the infant who's just overfed and then they have excessive reflex. They're vomiting all the time. You know, it just compounds into everything and so that's the whole like [00:22:00] I love what you said about managing expectations because we're not, you know, we, and of course this whole time we're working, you know, any, any type of nutritional formula changes is done by the dietician or the medical team.

That's not us as an SLP. I want to be very clear about that. But we're often the outpatient or the EI provider, the one that's seeing the family. one or two times a week. And so we're seeing those things occur to be able to manage that position like, okay, this might be why that's happening. Let's reach out to the team and see what we could do to make your child more comfortable while also ensuring that we're meeting the goals that they need.

For this life saving surgery, but that is the priority right now, 

Karli: correct and I have given a few lectures at cardiac conferences and I put this big Picture on the screen because when I give conference lectures, I like to like put a picture on the screen just talk about 

Brianna: I love your lectures. I love it. If you'll ever have a chance to see Karli lecture, go.

Karli: Ditto girl. [00:23:00] Ditto. So I gave a lecture of the game Battle of the hills where, like, you know, you're someone's trying to reach the top of the hill first and you kind of push each other down. I want you clinicians out there working with a pre op baby who needs their heart surgery to make nutrition win.

So there's nutrition and development. We want them both to reach the top of that hill together, holding hands. Okay. That's our goal. But if you have to choose between your nutritional goals or let's say developmental feeding goals. 

Brianna: Yeah. Like a skill. Your feeding skill. 

Karli: Yes. And one of them might have to take a little bit of the temporary step back in the case of pre op.

nutrition needs to win. Because we need a baby that can survive this heart, heart surgery. 

Brianna: I hope that anyone listening is feeling validated by that, because I think sometimes as the provider, we want [00:24:00] to do and fix and like, put things on, like, oh, I, I, I have to improve this right now, and we need to be doing this, like, because you feel as though you may be not doing anything by prioritizing those things, but in this situation that is what needs to happen, and We need those things to happen so that all those other things can happen and can matter When it's time for it.

Karli: Exactly. I also want to talk about heart failure. 

Brianna: Yeah Yes, 

Karli: This is a great place to talk about heart failure. And this also falls under the pre op umbrella. So another reason why babies might go home without their surgery is because their heart looks pretty decent at discharge. And the cardiologist is saying, Hey, I'm not going to do surgery on a baby whose heart looks pretty decent.

I'm going to wait until they go into heart failure. Then I'll do surgery. And so this is a concept, believe it or not, that took me a long time to [00:25:00] understand. In that I just thought, well, let's just repair this heart and like move this baby on in life sooner. That makes more sense to me, but really it's not.

They want the baby to go home. They're monitoring their heart and they're expecting the baby to go into heart failure. So what does that look like for you speech pathologists out there in the outpatient and EI setting? What it looks like is this. You have a baby that's feeding fantastic. They're discharged home from the hospital.

They've got fantastic feeding, and then all of a sudden, their feeding starts to tank. They're worsening with feeding. And so their pediatrician is like, go to speech pathology. They'll fix you. You'll avoid a feeding tube if you go to speech pathology. For some reason, the speech pathology team will have your baby continue to eat while they're going into heart failure.

I want to let you know that what this looks like when they come to you is a mom being like, I heard you're going to help us avoid a feeding tube as my baby needs surgery. Here's where you have to [00:26:00] manage expectations. Here's where you have to say your baby. Is expected for their feeding to get worse, not better.

The feeding will start to tank and tank and tank. As the baby goes into heart failure, the baby is expected to go into heart failure as a prerequisite for surgery. And this is where you might be counseling families without NG tubes to say, Hey, Let's refer you back. It seems as though working on feeding by mouth right now to progress your child is not my goal.

Maybe to maintain, but not to progress. And here's where the chutes and ladder games come in. Here's where the regression happens. And so expect a regression at this phase. 


Brianna: Yeah, I love that because I think one, we need to be aware of these cases, right? Like there, there is a reason, that is, it is a [00:27:00] prerequisite that they need to go into.

Things are expected to get worse before they can go into surgery and things can get better. And I think too, you know, during this time, talking to families as well about like, let's go talk to the team. But, you know, a lot of times we've, we've mentioned, like, we're the ones that see the family, like, every week, or twice a week, and we're, we're following up with them about what's going on, and so they will ask us the questions, right, of like, well, what does it mean if they, if they do think they need an NG tube, or what does that mean, and really one thing I like to talk to families about is, like, it's a tool, and it's a tool that can really help where we can say, hey, you know what, they can continue to feed as they're doing, but it's harder for them to keep up with it, right.

to meet their nutritional needs to grow and develop. And so this is another tool we can use to keep mealtimes more positive as we're waiting for that surgery. Because if we go into this, Oh, it's getting harder and we just start pushing more and they have to [00:28:00] work more. We have the potential to create an aversion.

And I would much rather go into surgery with the happy baby about meal times and come out on the other end of it than to go into it with a baby who was very aversive to what was going on. Now they go into a medical situation, a surgery, very, serious surgery. And then on the other side of it, they're like, Oh yeah, I don't, I remember that thing.

And I didn't really like it. You know, referring to the bottle, for example. 

Karli: Yeah. Yeah. And it's okay to pull back significantly on that feeding plan. So it's okay for you guys to say, I want you feeding 10 to 15 milliliters. Two times a day. It feels like a regression and as speech pathologists, we never want to feel like we're regressing.

We want to say, no, we're going to help you progress, but it may be a necessary step for you to pull back on how much that baby's eating so that you're doing, I guess what we would consider, I call them therapeutic feeds. I'm not sure what you call them, meaning that you're [00:29:00] feeding to maintain your skill.

So I pulled back the therapeutic feeds when kids are in heart failure waiting. 

Brianna: Well I think it's kind of the example of the compensatory versus habilitative or rehabilitative strategy, right? So in those cases, we're using something more compensatory that says like, this is what they can manage for where they're at right now, whether that's pulling way back, supplementing with an NG, doing smaller, more frequent meals.

Like sometimes that's enough, or now's the time that we start fortifying. So maybe we don't want to. to push excessive volume, but we need more calories. You know, there's so many different ways to approach it, very child dependent, all that stuff. But yeah, I think it is something that, you know, again, I just love that this conversation's hopefully validating clinicians on, like, it is okay.

Like, we want, yes, we want to push and be like, yes, get the skills better, but sometimes our goal is just to maintain as best we can. While keeping everything positive in the child growing going back to your Hill analogy, which ones are supposed to be prioritized? [00:30:00] And that's what we have to push for

Karli: And it's okay. I'm validating you to take a break from feeding therapy while your baby is going into progressive heart failure. You do not need to be at feeding therapy the week or two before your heart surgery. It's okay to take a break.

It's okay I have a little soapbox that I have and you have such a great platform out there in that you have so many people that follow you and are looking to you for feeding advice. So I have a little, little blurb about what I wish for the EI and outpatient therapists who capture these babies that I don't see before they're admitted to the hospital because I work, I work in the inpatient cardiac unit.

I wish that the outpatient and EISLP would prepare the baby for at home to help me when they're in the hospital and here it is. 

Brianna: Oh, I'm so ready for this conversation. 

Karli: Okay. So these babies are about to go under [00:31:00] major heart surgery, and we'll go into the post op discharge later, but when they're in the inpatient unit after the heart surgery it's my job to figure out how to feed these babies after their heart surgery is over when they're in the intensive care unit and just recovering from a major open heart surgery.

And so one of the things I sometimes think is Oh, wow. I wish that the outpatient therapist could have worked on these things when they were working with them to help me in that. And I'll go through them one. I'm a, I'm a lactivist pro breastfeeding all the way pro breastfeeding lactivist. Here I am. Where I am struggling is if, when I have a baby that is.

restricted and kind of tied down on a bed after surgery. And we need to figure out how to feed this baby because they're not allowed to move their arms or legs because they don't [00:32:00] want them grabbing at their chest, right? Or the tubes, but they still want the baby to eat by mouth. And I, I, I try my best in this position, this baby sidelining and, and what have you, but a mother is not able to drape her body over.

In this way to breastfeed her baby in those five to six days where the baby's restricted. And have you ever come across a situation where a baby just won't latch to a bottle because they have no experience with it? And they'll only latch to the breast. So pro breastfeeding, pro lactation, pro exclusive breastfeeding.

Perhaps like, just like you kind of prepare a kid that's about to go to daycare that They need bottles in daycare. If your baby is exclusively breastfeeding, perhaps we could prepare that they know how to at least consume a bottle before that. It's really hard to teach bottle feeding. As you guys know, in the outpatient setting, it's really hard to teach bottle [00:33:00] feeding when they're only latching to the breast.

It takes some time. Imagine doing that when you're sick. 

Brianna: Under a stressful circumstance on top of it. 

Karli: Stressful circumstances. So that's one thing, a little inpatient to outpatient process. The other thing is this, is that there's something called post op or post extubation dysphagia.

We hear a lot about this in the adult community. In the pediatric community, there's a little bit less research on it. But after you have that breathing tube down your throat to ventilate them for the surgeries. We're finding it's common that the babies have some transient swallowing difficulty after we take that breathing tube out.

And so sometimes we bring in the home bottle and the home bottle is super fast and the baby's laying down in the crib. Not quite able to get into a side lying and really restricted in the way we're able to hold and move them because they have tubes and wires and lines. [00:34:00] And the only latch to their home bottle.

Of course, we know, we know that babies get bottle preferences and their home bottles super fast. And so even though they're able to tolerate that when they're well, They're not able to tolerate that in that position. I can't get them in a sideline position. And sometimes, that specific bottle, I just can't get my hands on in those moments.

And so I have to. do one of two things. I have to try to get a baby to latch to a different bottle shape for the first time under these circumstances to make it slower. Or even worse, I might have to send the parent out to target to go get that bottle in a, in a slower flow. So prep your family say, Hey, like, could you possibly bring a slower flow nipple with you that, that your baby likes that might help them when they're in that, in that position for that post extubation dysphagia.

One more tip is don't forget that vocal fold paresis and[00:35:00] nerve injury is very common after heart surgery. So when the surgeons go into the heart, there's a ton of nerves that are surrounding the heart. the recurrent laryngeal nerve, which is a branch of the vagus, the phrenic nerve, which innervates with the diaphragm.

There's one that innervates with the lymphatic system. They're all kind of around the heart. And so postoperatively diaphragm paresis is common, vocal fold paresis is common, and these things that would cause new onset pharyngeal phase dysphagia are common. And one of the things I wish The outpatient or EI therapist would prepare these families for is maybe giving them like a little heads up that that might be common and that it doesn't quite blindside them when they come in.

And also perhaps get them latching onto bottle systems that we know that we can provide a thickened liquid through in case we have to go that route, you know, not all nipples. really help thicken liquids [00:36:00] go through them, even if they're faster flow. So these are just some tips I can pass along to you guys and your community.

Brianna: Yes I love that. Cause I think it, it really feeds into the pre op being managing expectations and managing the expectations of what's going on now. What's our priority, what to expect in that immediate post op time frame from the feeding and swallowing standpoint, I agree. I mean, I would say that.

Majority of my patients experience some version of those, one or all, or, pieces of it where it can just really be helpful, again, to kind of prepare them with, like, here is a tool that could be really helpful in the post op time. Again, pro exclusive breastfeeding, if that is what you want to do.

But, Under that circumstance, there are certain things that we need to support. And I think the other thing that I would add onto what you were saying as well, I'm also CLC, so a lot of times I'll help families with that lactation side, but if you don't feel, as a clinician, equipped to support [00:37:00] with the milk supply side, the pumping, that side of it, that's the other piece I would kind of add.

So, like, yes, we want to use the bottle, it might be the tool hopefully we can use pumped breast milk in that situation, but knowing that mom is going under or caregiver is going under a very stressful situation on top of we may not be able to do breast or chest feeding at this time. We also need to manage milk supply and just prepare them for that expectation, too.

Karli: Yeah, I'm so glad you brought this up. There's been so many cases where exclusively breastfed infants have come in and then the baby will latch to the breast afterwards and somehow have bypassed having dysphagia, which is great. But mom's milk supply has tanked because she's been so stressed and she hasn't been sleeping or eating like she could and hasn't been pumping on schedule because she just can't leave that bedside.

And so perhaps an exclusively breastfed infant preparing [00:38:00] them or counseling them. If you're a lactation counselor, please, I know you're going to be stressed. Keep your breast supply up because You know, if your supply tanks prior to discharge bottle feeding will have to be introduced as a way of discharging you home.

Brianna: Yeah, absolutely. So, are we ready to transition into the post op? 

Karli: Yes! 

Brianna: The post op is for outpatient EI. Also, do you see my dog right outside my door? So cute. I love him. Let me let her in real quick. 

Karli: Sure. 

Brianna: Come on, Zuri!

Karli: How cute. 

Brianna: Was like, Mom, I want to be part of this. Okay. So let's get into outpatient EI post op now. 

Karli: Okay, so here is what it's going to look like for you guys in EI. Your baby has come home from the hospital. And I [00:39:00] just want to put it out there that you have to ask the family because the family will know this.

It's not your job to go diving in and become a cardiologist. The family will know. Is this a one and done surgery? And a lot of them are, a lot of surgeries are one and done. And usually the family knows that after the surgery that everyone's like, nope. This is the only surgery that we anticipate this child needing.

This is a one and done and you're good to go. So I usually ask, is this a one and done? And if it is, then you as a therapist get to say, okay, now I can progress you. as typical through the developmental stages and expect a linear progression at that point. So that's helpful information to know post op, correct?

Brianna: Yeah, and I think that's something that's so valuable, for parents to hear from us as well in terms of, like, once the cardiac surgery or surgeries, because, you know, that does sometimes happen, are, are completed, Here's [00:40:00] somewhat of what we can expect. You know, now we can just move forward with our feeding goals, our skill based feeding goals.

And while we are going to have nutrition alongside it, you know, our trek up that hill is changing a little bit. 

Karli: That's right. That's right. It's no longer a battle of the hills. Hopefully you guys, hopefully nutrition and development can kind of chug on together at this point. Here's one of the things I say to people.

Remember that this baby is in a state of development and recovery at the same time. So your baby may still be having signs that they're recovering from heart surgery when they're home with you. They may be sleepier. Also, one thing is sternal precautions. And so, the baby may have had their chest sternum surgically sawed open, and then closed.

And so, think about how you burp a baby. We kind of scoop the baby up by the armpits and kind of [00:41:00] put them over our shoulder and burp. Our surgeons have not cleared them for that activity yet. They have not cleared them for Being handled in a way that could possibly have that sternum. That's trying to reopen.

Brianna: I find that like a lot of the precautions. They're like, not lifting at all under the armpit as well. So even just the things you just have to think more actively about in the moment. Oh, how can I get him in this position then? Because I feel like that's our natural go to. 

Karli: And if there's OTs on your call, like tummy time may be restricted.

Like there's things that you have to be aware of, but the parents should know those restrictions. kind of help you guide them through. So modify your burping and kind of help the family work through that. The other thing is that hospital acquired oral aversions are so common, unfortunately, and they're really not understood as a matter of fact.

We have so many babies [00:42:00] who have fed. Beautifully pre op to go into the hospital. You know, stay maybe one or two weeks and go home with a raging, raging oral aversion and working with the oral aversion population like you have, I'm sure you know that the best way to work through an oral aversion is not to get one to begin with.

They are so hard to undo once you've got them. I just want to go into this. We realize that this is such a big issue. The onus is on the inpatient cardiac team at this point, so much so that we're pulling together a task force in the cardiac newborn neuroprotective network to say, Hey, we need to understand this.

We should not be sending home babies that eat by mouth. They're with us for two to three weeks and we've completely ruined all the work. That has been done preoperatively and sending home babies with oral aversions. One of the things that we're thinking about is that[00:43:00] most of these surgeries that the babies are home first and then they come back in are happening around.

three to six months of life. One of the hypotheses that we have is prior to the baby coming in, their feeding's reflexive. They have those reflexive infant feeding abilities. Then right around the time that feeding kind of integrates in the brain and becomes more of a Behavioral pattern, we are doing the surgeries right at that moment of integration of reflexes, taking them out of the feeding game for, I don't know, usually a couple weeks, I think the average is about eight days that you can't eat, by time you're admitted and all of this stuff.

And then right. You're kind of working through it and then we're forcing these babies to eat so they go home without feeding tubes, and that's happening on the inpatient side. It's a problem. And so that is definitely the next direction of cardiac feeding science. Anybody [00:44:00] listening in that wants to join all this endeavor with me, please reach out to me.

We need to figure this out. Yeah. Have you experienced that? 

Brianna: Yeah. And it's a great point. And that's why I also brought up earlier, like really, really emphasizing in that pre op time of like very positive, very responsive, the best that we can, because it's really easy to even beforehand, sometimes there is more forceful or pressure full feeds because, we need them to just gain weight and grow so that we can just get in for the surgery and they have to hit this mark and this weight and like.

That pressure to really try beforehand as best we can is like you said the best method is prevention it's really saying like, okay Well, let's do our best to set it up to be as positive and as an experience as we can But it's really really tricky and if you have some of those restrictions because you know even thinking about You know early skin to skin time 

it's it's hard because there's a lot of physical restrictions To the [00:45:00] positioning the baby can be in And I think that I totally understand where it's going from that more like reflexive to voluntary piece playing a role where infants like I have control whether I want to do this or not but I also wonder pieces of like the The attachment part that goes in there and when the caregiver can you know, be there and be responding, as the baby wants them to, but there's so many restrictions for their safety, right?

And it's those that are there for a reason, but. It is really interesting and I definitely have seen it. I really find that I would personally, in outpatient EI, I sometimes would rather them be sent home on the tube so that there's less pressure involved than for them to have been pressured for it.

to get the bottle to a point and then they go home. And I find that sometimes those infants end up back in the hospital because they are just refusing. And they got them like just enough to [00:46:00] discharge, but it wasn't quality feeding. And I would almost rather there be like, Hey, let's just discharge home with the tube and we have a little bit more time with low pressure to get them back to where they were feeding.

Karli: I'm so glad you said that because that makes the onus. Some education might happen beforehand from you guys in the EI or outpatient setting saying if they offer you to go home with a feeding tube, because sometimes the parents decision isn't cut and dry.

Like the cardiologist is saying you have to

Brianna: right? 

Karli: Sometimes the parents are saying, I'm not going home with a feeding tube. I'm not going home with a feeding tube. And believe it or not, parents have more weight than we think they do in the hospital, like parents have a lot, a lot of saying things.

So perhaps some counseling like, Hey, listen, if they offer you to go home with the feeding tube, because feeding is tottering. Like we're just. Riding those numbers and you know, they trust you, you've been working with [00:47:00] them, like maybe you can counsel them saying like, Hey, don't, don't necessarily turn that down.

We might need it for a couple of weeks at home. It might be an insurance plan. So that goes back to like this. 

Brianna: I feel like it goes like, if we can get home earlier on that feeding tube with low pressure, we can focus on positive experiences. It's almost better than staying in the hospital.

Longer with the pressure of forcing the volume. 

Karli: And I wonder if, if we can reduce, just even being in the hospital, length of stay associated with risk for reversion. Like, get these babies home. We're gettin 'em home. We're not, get them home.

We're, we're causing oral aversions in these hospitals, the other thing that my experience is that now the heart's fixed and the parents were told, okay, once the heart is fixed, the baby's going to feed well, right, right. That's what they're told. And you're, and you might be telling them to get that heart surgery.

Your baby's going to feed, get that heart surgery that your baby's going to feed. And then now you've got a, a baby with continued GI dysfunction because we've [00:48:00] wrecked their guts by allowing them to have a hypoxic state on their gut for so long we've Entered a ton of sedatives into their body that have ruined their medications that really and so what we're finding, what the literature is sharing with us is that one of the longest kind of things to come back is clinical signs of reflux and G. I. Just discomfort. And so you might be dealing with a baby that has gastrointestinal challenges, which we know are challenging to manage. 

Brianna: Yeah, absolutely. Because I think it's one of those things that, you know, we do see. That yes, things will get better, but the timeline of that is where I think there's like that little bit of that misinterpretation of like yes, we do expect feeding to get better, but there's a lot of other things we have to work through before we get to that point, and like you said, going back to your [00:49:00] chutes and ladders, We may have gone down a bit of a chute for a little bit, and so we have to look before we even expect the feeding to get better from our baseline.

Karli: Exactly. Moving forward, , we're not going into hypoplastic left heart or single ventricle defects. too much here in this discussion because they're really complicated and I recommend an advanced course on that. I do recommend anyone working in this population to go for an advanced course on that.

I do want to say one thing. When you have a baby with a single ventricle defect, we consider those to be one of our riskiest cardiac populations to work with. And unfortunately, feeding has been associated with increased risk for mortality. So feeding a baby too much in their gut or having a baby aspirated has been associated as, you know, reasons why these babies are having challenges.

If you have a baby with a single ventricle defect, it's one of those pause moments for you guys. Where are you? [00:50:00] probably will have to connect with their cardiology team through email and really initiate conversation with them throughout the process. There is a supportive organization called NPCQIC. And if you're working with this population with single ventricle heart defects, they have a ton of information on how those babies feed or how to manage feeding .

It's not your job. to manage those babies' feeding. It's really their cardiology's team. jobs manage how we progress and how we regress. And so if you're working with a baby with single ventricle physiology, we call it such as hypoplastic left heart would be the most common., get their cardiologist email and just say, Hey, this is what I'm thinking.

I'm thinking he's ready to progress. Are you guys okay with that? And, and that's one where I would. Take some pause moments. The most riskiest phase for that is something called the interstage. And I, have you heard that word? When a baby's in [00:51:00] the interstage? 

Brianna: Yes. Yeah. 

Karli: That's between their first surgery and their second surgery.

So that's the stage between the Norwood and the Glenn. That's the riskiest phase. After the Glenn, things lighten up a bit. There's a little bit of light for us. We can get a little bit more assertive with our feeding. And so, I just wanted to put that plug in there. If you guys need more information on that, I encourage you guys to take an advanced cardiology course.

But these babies are landing in your laps through your clinics and things, so. 

Brianna: Yeah. Now I think that's super helpful to understand because it's kind of like. No, no single baby with CHD or other heart defects is going to be exactly the same and we have to really recognize that and understand when to Hopefully by the end of the discussion you realize when to pause, when to stop, when to say, okay Now we can go, when to, you know, really recognize [00:52:00] that it's it's kind of a dance that we have to play through and it isn't always that, you know, we're the most important person in the room and that what we're saying is the most important and the only thing and we really need to take those team based approaches there.

So I think that though, that really is a good segue into kind of some of the sort of like controversies or, you know, what are some of the challenges regarding current feeding parameters when thinking about CHD because it's It's definitely not the same as we mentioned all the way in the beginning as just preterm infant as just, you know, other diagnoses.

So why don't you share some of your light in those spaces? 

Karli: Yes. And so cardiac feeding has been a little bit of a hot topic. We've been shaking up some of the feeding world a little bit. We're just trying to understand where we are as a science and so We used to think when I first started out in feeding that there was very little information on cardiac [00:53:00] cardiac feeding and how to manage these babies.

So what we used to do is we used to pull from where there was information, which is in the preterm literature, the preterm literature, the founding fathers and mothers of preterm feeding science were amazing. And they have really laid the foundation for how we understand feeding practices for infants.

And we are so grateful and we're pulling from that literature. But then as we start to dive into babies with CHD, We are noticing that sometimes the way we manage them as if we would a preterm infant doesn't necessarily support progression in these little pockets of oral feeding experience.

And I'm going to explain. Sometimes a baby, let's say admitted to the hospital, will have only three days in which they are permitted to eat by mouth because we know that they're going to get a surgery on Thursday. It's Tuesday. We have [00:54:00] three days that we're allowed to feed this baby because we know they're getting their surgery and we know the surgery that they're going to have is going to take them out of the count for eight weeks.

Like depending on, these surgeries, we know, 

Brianna: And we know that there's going to be the. NPO before the surgery for so many hours. 

Karli: Yes, and we know that this surgery that they're going to get, there's a high risk for vocal fold paresis. And there's a high chance that your baby may not eat again for a long time.

Not a long time. Your baby may not ever bottle feed again. Unfortunately. What we're seeing is we have to make choices like this may be the only time that a parent will bottle feed their baby or breastfeed their baby in their life because we know that they'll get dysphagia afterwards and we know that they'll get an oral aversion and then the next, next step is spoon feeding.

We know, we know when they cut out that whole bottle feeding phase. We're making choices. We're making choices to say, feed your baby. Even though they have a high respiratory rate, even [00:55:00] though they're breathing 80 breaths per minute, we would never feed another baby breathing 80 breaths. Like, we just wouldn't.

You would never feed a tachypneic baby in any other circumstances. We in the cardiac field are saying, okay, like, we're leveraging the uniqueness of this population. There's a little bit of controversy involved in it and that we're feeding babies with high respiratory rates. Perhaps we're feeding babies with a little bit of a higher flow than other populations but we're making decisions now, now that we're doing that though, we have to study it.

We can't just do it without studying it. And so, like I said, cardiac science is well behind preterm science. And so we're, we're studying it. We're, we're trying to, we're trying to catch up. You have to bear with us. We're trying to catch up. 

Brianna: Yeah. It's an important note though, on the difference of like the baseline that you're looking at in the cardiac baby.

And so. We're seeing like, [00:56:00] oh, this, this child is tachypneic. Why would we feed them? But that's their baseline because what's going on from a structural standpoint, the physiology is being affected. And so now, but it is, it's tricky, right? You're, it's still tricky. Well, okay, but like, because we do have this anatomical difference .

Does that necessarily mean we should do it just because they are?

Karli: It's tricky and it's tricky. It's hairy. It's probably going to get hairier. It's more or less hairy. The more research we get, but we're going to, we're involved. We're keeping, we're keeping a pulse on the situation. The other thing that we sometimes do is, we are introducing spoon feeding. This is a controversy. Again, the literature we have to keep up. These are trends and practices. Perhaps we're introducing spoon-feeding a little bit earlier than babies who don't have CHD. And I'm going to explain it this way. A lot of our babies, we have completely given them an oral [00:57:00] aversion.

They're stuck in the hospital, or maybe they're at home and they're, they're not latching to a bottle. And usually, we wait for head and trunk support, right? Like that's a prerequisite, but we need that swallow active. And the therapy for swallowing you got to get that swallow active.

And so in these populations where there's such a high incidence of babies with CHD who do not bottle and breastfeed. There is like, we've, we've really knocked out their abilities to do that because we've not done wonderful things in that circumstance and so, and so I will introduce little teeny sips of breast milk from a spoon in a Bottle feeding position to babies with CHD because I want them swallowing 

Brianna: Yeah Prioritizing I think it comes into that kind of like risk to benefit pro to con of doing those things because and I think you know just to clarify like Sometimes when you're doing those things like spoon-feeding or I've even done like medicine cups or like kind of like the open cup mimic in that positioning as well, because we need the swallow practice and, you know, this might be an infant who is four months old, but I need them to swallow and I prefer that over syringing something in their mouth.

We need something to practice with it. And I've even, you know, if this is an infant who's closer to that, like five, six month range I've even gone ahead and been like, start introducing a straw because they've got this excessive aversion to the bottle and. this might just be where they need to go. And for some infants that takes a little longer, which is where the spoon and the open cup can come into play, but I've had some kids that just like to take off with it.

And I'm like, okay, I guess that's where we're going to be. 

Karli: Exactly. You practice the same way I do. I love that about you. [00:59:00] And then the last, the last controversy I want to talk about is the hot potato phenomenon. The hot potato phenomenon is this, is that nobody owns the feeding and this is so stressful and controversial.

So the cardiologist needs to own the feeding because the heart is involved in the system. The dietician needs to own the feeding because they're managing nutrition. The speech pathologist. owns the feeding because they're progressing through the developmental milestones. The pediatrician owns the feeding because they're their pediatrician.

And the parent also owns the feed. What happens is the hot potato effect. It happens all the time. And it stresses me out that it's not your potato. Nobody is making these feeding advancements until they pass the potato and this hop. And then you've got the situation where This baby's, I've had situations, this baby's feeding has not been advanced because [01:00:00] nobody is holding the hot potato in their hands.

One of the things that we need to do is figure out who is holding the potato and who is in charge of the feeding tube. And so the cardiac organizations where we are pushing somebody to own the feeding tube and be the case manager of the situation without doing the hot potato. And so each center is different.

Each cardiac center is different. This is like a controversy and a challenge because of that hot potato phenomenon. Have you seen that happen? 

Brianna: Yeah, well, and I'm curious because this brings up the episode that I recorded with Tova Fian if nobody's listened to that one, about fear-based decision-making.

And I feel like the hot potato gets passed when someone goes, well. And, and I'm thinking more specifically from a clinical standpoint where you go like, Well, I'm just not sure, so let's [01:01:00] see what the physician says. And the physician's like, I said we're good to go, let's see what nutrition says.

Nutrition says that, and then it's like, But I'm still just not sure, you know? Or, we need to, before I do something, I have to have a swallow study. Or, well, I have to have an update on this. Or I have to have, and it's like, Sometimes I think that we pass in those situations because we're coming from a fear-based decision viewpoint.

Karli: Correct. And so that's another challenge in this population. But in a nutshell, that is a basic, basic 101 of managing cardiac. Taking, taking something very complex. And trying at least to simplify it, but, I do recommend you guys get a chance to take an advanced cardiac course to do it. It's worth it.

I promise. 

Brianna: Do you have any that you recommend, Carly? 

Karli: You know what? I will get back to you on that. 

Brianna: Yeah, [01:02:00] if you give me a few, I can just kind of put it in the show notes. Yeah, let me see. I mean, I recommend, like, if you attend, like, Asha, you know, definitely go to the talks that are sharing the new research, the new findings on these topics.

But if you have any specific courses that you've, you've come across that you'd be willing to share, I'm sure people would appreciate that as well. 

Karli: Yeah, I will. I will take a look. Take a look. Yeah. Yeah. 

Brianna: All good. 

Okay, cool. So before, before we close for today. I like to do some rapid fire questions that have basically absolutely nothing to do with speech-language pathology.

Or feeding, because it's just fun. So, I have three questions for you, okay? The first thing that comes to mind, is don't overthink it. Don't overthink it. Alright, what is a current show you've been binging? Current show you've been into. 

Karli: A current show I have been binging, believe it or not, is Love on the Spectrum.

Brianna: I just binged [01:03:00] Love on the Spectrum! I literally, like, I was working on a paper, and then was like, but this would be good in the background. 

Karli: I have fallen in love with each one of these characters, and if I could go back in time, I would probably date any of them. I'm married now, but, this show is wonderful, and 

Brianna: I appreciate the realness of it because I cannot get into other, like, dating shows because it is so scripted.

Karli: And creepy a little bit. 

Brianna: Yes! And I'm like, this is so real. Like, just. Genuinely like themselves and I just, I appreciate it so much and I mean I, it would be really hard for me to put myself in a position like that so I'm like y'all are so brave. Kudos to you for going on a dating show but I love that.

Karli: I do too.

Brianna: I definitely do that. The one show I, besides binging that this weekend, is I've been watching True Detective and I just finished this [01:04:00] season. Have you watched that? 

Karli: No, but I'm writing this down. 

Brianna: Okay, it is. So basically they do like Each season is a totally different crime show, like completely separate, so everyone could watch seasons out of order and it wouldn't really matter.

But it's basically these like crimes, but they have twists and turns and really complex stories and it's just a short series. I really like it. So, I just finished the season, I don't even know what season we're on, five maybe? The first season has Matthew McConaughey and Oh, who is it? Woody Harrelson.

They're, they're in season one. It's really good. It's really good. Highly recommend it. Okay, second, second question. What is your favorite dessert? 

Karli: My favorite dessert is pumpkin pie. I love pumpkin pie. 

Brianna: Really? 

Karli: I love pumpkin pie. Good old-fashioned. 

Brianna: That's your favorite? 

Karli: That's my favorite. What about you?

Brianna: Mine's cannoli. 

Karli: Oh my gosh. We are so Mafia Wives right now. Yes! It should have been the cannoli! Like my Italian grandmother is like You better say [01:05:00] cannoli. 

Brianna: You better say cannoli. Though, I love it. 

Karli: Oh my gosh, you are a true mafia wife there with the cannoli, I love that. 

Brianna: Okay, final question before I kind of close into everything.

What is a book you feel like everyone should read? 

Karli: What is a book I feel like everyone should read? I don't know. I don't know. I'm stumped. I'm

Brianna: stumped on that one. Mine is Adam Grant's Think Again. I think everybody should read that. It's about rethinking our beliefs and, like, sitting in the uncomfiness of, like, maybe I was wrong.

Karli: That's a big one. 

Brianna: He also just released another book, but I haven't, I haven't read that one yet. I'm sure it's wonderful, but he's an organizational psychologist and he talks about, like, challenging our current beliefs and the way we think and how, like, In the face of new information, we need to change our thinking and it's, they're really good.

Karli: That's so important to think about [01:06:00] what's in your belief system and as new evidence is coming out to challenge yourself. I think that's hard because it puts us in an uncomfortable zone. 

Brianna: Yeah, it's hard to be like, Ooh, I was wrong. And if I could go back, I would change that. But To me, it's like, there's no shame in saying, Oh, I didn't know better, and now I know better, so I'm gonna change.

It's, shame's really an, oh, I know better, but I'm gonna hold on to that old thing, because that's just how I've always done it, or that's just the way I believe in the face of new information. So, but that's a great book to, to kind of challenge your, your thinking. 

Karli: I'm gonna write that down. 

Brianna: So, last thing, anything else you wanna say about the topic, and then where can people find you to learn more about this topic or ask questions or any of that?

Obviously you're on Instagram, 

Karli: Okay. So you can, first of all, you can find me in several places. I am. I am, [01:07:00] I'm like buffing right now. Hold on a second. Let me, I'm, I'm cluttering, okay? I actually have a cluttering. 

Brianna: Too many places! You're in too many places! I have too many places.

Karli: So you can follow me on CHDSLP on Instagram. You can also join the Cardiac Newborn Neuroprotective Network. We run that organization that is designed to understand cardiac disease and how it impacts. Development. And then you could also, I'll, I'll give you my email. Maybe you could put it in the notes?, 

Brianna: Yeah, .

I'll link all of these below so that anybody who's looking at the show notes, or if you just look at the description, wherever you're listening to your podcast, you can see Instagram. And then I'll also link the Cardiac Newborn developmental Network. So I love it. Yes. And then just send me what email you would prefer people if they do have any further questions or anything.

And I can, I can throw that in there too. 

Karli: And finally, and final thoughts would be that you know when you think of passion[01:08:00] you think of the heart. And so I just want to say that I am so passionate about CHD because it impacts So many members of our community, it is the most common birth defect that impacts our community.

I just want to say that I hope that you guys are inspired to continue to develop an understanding and how to work with this population. And happy Heart Month. We're recording this in February, so happy Heart Month. And thanks for having me. Our paths have peripherally crossed.

Brianna: In so many ways! 

Karli: It's so bizarre! Can I actually tell the story about how I slid into your DMs? 

Brianna: Yes! Please do, it's so good! 

Karli: I slid in, so, I have, you and I have a common friend, her name is Tovah. And we have a couple of common friends 

Brianna: that we've slowly found out over time.

Karli: Steph is also a common friend, but we have a common [01:09:00] friend.

Her name is Tovah and Tovah told me she started an Instagram page. And so. I, like, in the middle of the night, like, just start DMing her, being like Yo, this is fantastic! Pearls! Like, like, get it, girl! Like, I can't believe this! This is phenomenal! Like, just, you know, 

Brianna: Hyping! You are hype! You are a hype girl! You are hyping!

Karli: I was the hypest of hype girls in this DM, and you matched the energy! Yeah, you know, your energy match was like, yeah, like you didn't know me and it wasn't it took a long time for me to realize that like, 

Brianna: oh, like I DMed the total wrong account, 

Karli: but, but like, now 

Brianna: they're very similar though, because Tova's is pediatric feeding partners and mine's pediatric feeding SLP so I can totally see where you just searched pediatric feeding and just

Karli: It was the best thing I ever [01:10:00] did because then I'm like, okay.

And then we've never, you know, our, our paths have crossed, like through peripherally. And then I was going to Asha this year and I'm fresh off the plane, carrying my luggage, you know, smelling like an airplane. And then the doors open and I see you and I'm like, Oh my gosh, in an elevator. So I'm so glad that we get to do this together.

Brianna: I was so, I mean, it was just the best thing ever, honestly, like. Let this be a lesson, just slide into the dms. You never know what's gonna happen. Like I have met so many amazing colleagues and friends just through that, and I'm, I'm so glad you did. And you taught me what big pearls meant. Like I was like, I said, okay, what does that mean?

But I was ready for whatever that meant. And okay, 

Karli: You, you matched that energy. And that's what I love about you. 

Brianna: Well, thank you so much, Carly. I literally feel like I could talk to you for hours on end, and I hope that everyone listening enjoyed it. I mean, you were just, like, [01:11:00] your, your passion for this topic shines through, your expertise, your just, I just love you.

I'm just, thank you for coming on here and, and chatting, chatting with all of us today. 

Karli: Thanks. 

Brianna: Alright, bye!

Thanks for tuning in to The Feeding Pod this week. If you enjoyed today's episode, please don't hesitate to share this podcast with your friends and colleagues, and leave us a five star review wherever you're listening from. If you're interested in learning more about pediatric feeding and swallowing, be sure to follow Bree Me!

On Instagram at Pediatric Feeding SLP. Or check out my website where you can get access to more courses and information. www. pediatric feeding slp. com. Again, thanks for being here and listening to my ramblings, and I hope you'll keep listening. Until next time, cheers.


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