[00:00:00] Speaker A: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding does matter.
[00:00:14] Speaker B: Hey, everyone. It is Jaclyn Peterson, CEO of Feeding Matters. And it's just me this week because I had an amazing conversation with one of the moms at Feeding Matters and I wanted to share it with you all. So next up is my interview with Shayanne to talk through her story with her and her daughter. The reason that I wanted to share it with everyone was our power of two parent to parent support program at Feeding Matters is a program that is near and dear to our hearts. It's something that we take very seriously at our organization because it's at the core of who we are. Feeding Matters started by moms supporting other moms, and it's something that we will never lose sight of as an organization that parents, caregivers that are out there need support from others, and it's a tough landscape to navigate. And so we are here to walk beside you in that. And so I just think that Cheyenne's story is a great example of how the program empowers parents and caregivers, and I wanted you all to hear it. So enjoy Shan's story and Haley and I will see you next week.
[00:01:31] Speaker A: It all kind of started with Leah and her journey in the NICU. When we were discharged from the NICU, she was well, first, she was born at 25 weeks, so very, very early. We were in the NICU for like 119 days, I believe it was.
And when we were discharged from the nicu, she was using the bottle pretty normally, no difficulties. And honestly, we didn't start to see any feeding struggles until I would say, maybe a month in after going home.
That's when I started to notice that feeding time was not. It was never pleasant. It was always a struggle. It was a lot of crying and pulling off of the nipple of the bottle, never being able to finish a piece.
And then at one point, it just felt like we were trapped in the house because it would take her forever to finish just one feeding. And then I would say a couple of weeks went by and I had brought up to her pediatrician that she was struggling with eating, and they thought maybe it was like a dairy allergy.
So they changed her formula a couple of times.
But I remember specifically one day I went to go feed her and she just refused to eat. I couldn't get the bottle in her mouth. She just completely stopped eating. I gave her some time to think, like, you know, she'll get hungry enough, she'll eat. And she went all day without eating. So at that time, I took her to Phoenix Children's, and that's when they admitted her and got her all hooked up because she was severely dehydrated at that point because she just refused to. To eat. So that's kind of where it all started.
[00:03:14] Speaker C: Wow. How long were you in PCH once you got admitted? At that point?
[00:03:18] Speaker A: I think we were there for, like, two days.
Then they decided they were going to keep her a little bit longer, and then they tried doing, like, feeding therapy while she was in the hospital and just wasn't seeing any progress. And then at one point, someone came into to talk to me and said, you know, if we can't get her to eat soon, then we'll have to hook her up to NG tube. And I was trying super, super hard because I did not want that feeding tube.
So just trying all day. You're already exhausted because you're in the hospital. But now I'm, like, trying putting all this pressure on myself to get her to eat, and she just would not eat. It was just such a struggle in a fight.
So then they decided they needed to insert the NG tube. So I was terrified because it's just a weird thing to. To do to your baby is put a tube down their nose.
But I knew if I didn't learn that she wouldn't. She wouldn't eat, so I had no choice.
So they let me practice a few times on a doll and finally got comfortable enough with it. And I think after they saw me do it a couple of times, that's when they let us go home.
So after that, we went home and yeah, she had been on a feeding tube ever since, and that was when she was five months old.
[00:04:48] Speaker C: And you didn't really. They didn't really find anything at the hospital besides, she just wasn't eating.
[00:04:54] Speaker A: Yeah, they couldn't find anything. They did all types of tests and blood work, and everything always came back normal.
[00:05:02] Speaker C: Yeah. Yeah. And had you heard about feeding tubes at all before? I feel like it's. Unless you've, like, seen it, it's just such a whole different world.
[00:05:11] Speaker A: Yeah, no, I was not familiar with it at all. I mean, having a preemie baby in general was very new to me going through that experience. And then it was like leaving from that experience into a whole.
[00:05:25] Speaker C: Yeah, you went right into all the challenges of feeding. That's a long time. And a lot of huge emotional highs and lows, I'm sure.
[00:05:37] Speaker A: Yes, for sure.
[00:05:38] Speaker C: How long did she have the NG tube? Did they give you Any sort of plan for the NG tube.
[00:05:44] Speaker A: I think that was the frustrating part because there was no true guidance. It was just like, now she has this new accessory, right. She just has this new tube.
[00:05:51] Speaker C: And, yeah, like, this is how she eats now.
[00:05:54] Speaker A: Yeah, this is how she eats. So I. I'm very grateful for her GI doctor because he kind of gave us a lot of guidance and a good plan. He was very determined. He's like, we got to get her into feeding therapy. So right after we left the hospital, she went into feeding therapy, and we were doing it, I would say, two, three times a week, and still no real progress. So we would have, you know, zoom phone calls. If she doesn't make any progress, then we need to consider a G tube. And he's like, I don't want her to go past seven months old with a G tube. So nonstop feeding therapy, no real progress. Seven months rolls around, and he's like, she needs to get the G tube.
At that time, too, Aaliyah, she dealt with a severe reflux, too. So it was a balance of trying to get her to eat, but also trying to balance her vomiting, because it was. It was horrific. Like, she would vomit any NG to feed, and it was always very, like, frightening for her. Like, it wasn't, like, a cute stuff.
[00:07:05] Speaker C: Scared.
[00:07:06] Speaker A: Yeah.
[00:07:06] Speaker C: And that's scary for you too.
[00:07:08] Speaker A: Yeah.
So it was. It was a mixture of both trying to get her on the right medications to help her with her reflex, but also get her comfortable enough to start eating things by mouth, which is.
They kind of cancel each other out, because I want to prove to her, like, putting things in your mouth is good, but it's kind of hard when all she has is all these negative things coming out and going in. So, yeah, it was. It was rough.
[00:07:34] Speaker C: Yeah. You almost don't blame them for feeling like they don't want to eat because of how much trauma they've got going on with either vomiting or anything. That's a poor experience.
[00:07:46] Speaker A: Yeah.
[00:07:47] Speaker C: So then did you. How did you feel about the decision to put in a G tube? That's such a challenging decision if you have a lot of doctors trying to. And then you've got the pressure to make sure they're gaining weight or coming off an NG or anything like that? That's a lot on you as mom.
[00:08:07] Speaker A: Yeah, no, it was scary.
I didn't even want the NG tube, but I figured that the G tube would be a little bit better just because I hated putting that thing down her nose. That was a horrible experience.
Awful.
[00:08:24] Speaker C: Yeah.
[00:08:25] Speaker A: Yeah. So when we decided to go ahead and do the G2, they also decided during that time they were gonna. I forgot what it's called. But they.
They checked like her stomach and like her lungs?
Yes. Yeah, they checked a variety of things to see if that was, you know, causing her difficulties towards eating. And again, that all came back fine.
No real issues there. So I think the biggest part for me, which I still have issues with to this day, is changing the Jeep too. But it's been fine since she's had it. We've had no real challenges with it.
[00:09:10] Speaker C: Yeah, it's a real life saving tool because then you can take the pressure off and just kind of try to live life as best you can and create the memories of meals in a more positive way, knowing she can still be hydrated when you need her to be and fed when you need her to be.
Right.
How was it after that surgery?
[00:09:34] Speaker A: I won't say they got 100% better, but they started to slow down a little bit. We were still dealing with the vomiting. I don't remember at exactly what point, but it was just like one day she just stopped. She was on Bethany call. And what is that? Ozeprimol or something like that.
Different. Reflux medication.
[00:09:56] Speaker C: Yeah, it's like a combination of reflux medication, modidine.
[00:10:01] Speaker A: She was on like three at one point. It was very, very intense.
[00:10:05] Speaker C: Yeah.
[00:10:07] Speaker A: So she stopped. And the game changer for us is when she got accepted into the Phoenix Children's intensive feeding program.
That's when everybody. Everything changed. She was not eating or drinking anything by mouth until that program.
Still 100% too fed. And then when we left that program, I wound up having to actually quit my job to even do that because it was a Monday through Friday thing.
[00:10:38] Speaker C: Yeah.
[00:10:38] Speaker A: But I was determined.
So when we left the program, she was eating like brown foods. So like everything was like crunchy crackers, like graham crackers or veggie straws, anything that was like brown. For some reason, she was really interested in potato chips.
And then she left out drinking water. It was from a very specific cup, almost like the. I'm sure you're familiar with the. The bear.
[00:11:12] Speaker C: Yeah, Honey bear.
[00:11:13] Speaker A: The straw. Yeah, Honey bear. So it was very similar to that, but it just didn't have the bear space on it. But she would only drink water out of that cup.
And then she left drinking Gatorade, But a very specific Gatorade. It had to be the cool blue one. So.
[00:11:30] Speaker C: Okay, well, preferences.
How old was she when she was in PCH's intensive program.
[00:11:38] Speaker A: She was two when we started because there was a bit of a wait list.
So I'm trying to think there was something else. Oh, Parmesan cheese. You know, the. The craft that you just sprinkle over your pasta.
[00:11:52] Speaker C: Yeah, love it.
[00:11:54] Speaker A: A thing like. Okay, yeah, very interesting.
She would eat a lot of Parmesan cheese. So that's what she left after she completed the program.
That's what she left eating with crackers and Parmesan cheese and a few foods.
Yeah, it was a huge game changer for us. And then after that, I wanted her to continue with feeding therapy, and they told me that they would possibly consider her for like a second round since she did so well the first round. And then I still don't really understand it, but she didn't get accepted to do around 2 of intensive.
So at that point I started looking for other options for her.
[00:12:44] Speaker C: Yeah, because it's kind of like you spend so much time and effort in that intensive program and then it just feels like a cliff after that is what I've heard.
Yeah. Because you build so much progress and you don't want to see it go away.
[00:12:59] Speaker A: Exactly. Yeah. Because, I mean, we were doing so well. And then it was like after that program, she kind of pulled back a little bit, and so that was making me really nervous. So I started taking her. You know, she was still going to the same feeding therapist that she had while she was at Phoenix Children's, but it just wasn't the same for some reason. Yeah, I don't know if it's because of the consistency, you know, was different. She was going once a week versus before. She was, you know, five times a day. Not five times a day, but five times a week. So that's when we moved from Scottsdale to Surprise, Arizona. So me trying to get her to feeding therapy was very difficult.
[00:13:48] Speaker C: Yeah, that's really difficult, Cheyenne.
[00:13:51] Speaker A: Yeah. So at one point I just gave up because I was so exhausted of trying to keep up with all these appointments. And I was like, I need to give myself a break.
[00:13:59] Speaker C: You do.
No, she needs a mom that's not just exhausted too.
[00:14:06] Speaker A: Yeah. And that's what it was. It was just me managing because I wasn't working, which is me managing doctor's appointments, the feeding therapy. And I would be so exhausted, I would either oversleep or. Or we would get stuck in traffic and we would never make it on time. So I was just like, I need to. Just need to stop.
[00:14:26] Speaker B: Yeah.
[00:14:26] Speaker C: Pull back from it.
[00:14:27] Speaker A: Yeah.
[00:14:29] Speaker C: Yeah. That's completely understandable. And Honestly, a very relatable experience to so many families that are in the middle of feeding therapy as you feel this, like, pressure and need to continue. But sometimes pulling back is what is best for you guys in the moment.
[00:14:42] Speaker A: Yeah.
Yeah, I agree. I think that also was very helpful for us because we were so stuck on what the doctors were telling us all the time and what the therapists were telling us, that we were afraid to do anything ourselves. Yeah.
And I think by me taking that time to stop taking her to feeding therapy for a little bit gave me the time to gain the confidence to try things on my own in my way, just to see how things would go.
[00:15:15] Speaker C: Yeah. You and her know each other best.
[00:15:17] Speaker A: Yeah. Right. And I think because I was so reliant on the doctors and the feeding therapist that I didn't have that confidence before, so I didn't want to do anything that would potentially, you know.
[00:15:31] Speaker C: Yeah.
[00:15:31] Speaker A: Lead her to, like, a setback. So when we did take that break, we did see her regress a little bit, but she slowly started to. To pick things back up. And that's. I mean, very recently, but it's working out great.
[00:15:49] Speaker C: Oh, that's good. So how old is she right now?
[00:15:53] Speaker A: Three. Now Three.
[00:15:54] Speaker C: Wow. So that was. So that's been a full year then of like, after the intensive program, trying the feeding therapy, that not working, kind of trying things on your own and that. Is that where you guys are today?
[00:16:05] Speaker A: I did stop feeding therapy for a long time just because I was exhausted. And then I found a local feeding therapist. She would do, like, once a week sessions, and based off of what her therapist would tell me, I would try to play off of that at home. So if she really did good with yogurt, then me and my husband would be like, okay, let's take her to get frozen yogurt. Let's make it fun. Yeah, let's let her pick her toppings. Even if she doesn't eat it, at least, like, she had fun. And, you know, she can associate that, you know, the same thing with French fries. So she started to eat French fries. So we're like, okay, well, let's see if she'll try cheese fries. You know, like, starting to, like, play off of the things that we know she already kind of likes. So how can we take it a step further?
And so after that, we found out about the feeding program they have in Orange County, California. Yep. I forgot. Yes.
[00:17:11] Speaker C: Yeah. Children's hospital in Orange County. Feeding program.
That one.
[00:17:15] Speaker A: Yes. Yes. So I reached out. I don't know how or what I did. I was just investigating. I reached out to someone at PCH and she got me in contact with someone at the feeding clinic up there. We first did like a zoom appointment and they thought she'd be a good candidate for the program.
So then we went up there for an in person evaluation and they thought she'd be a great candidate. So we were all set to go recently to do that intensive feeding program up there.
And the day of, they called me and said, don't come. Your insurance won't cover it.
So we have just been kind of waiting. Yeah, she is making a lot of progress on her own. So sometimes we ask each other, we're like, do we still need to do it? But I think we will just because we want to give her like, that extra push. But yeah, yeah, they're still trying to, in the process of like, getting it covered by her insurance.
[00:18:21] Speaker C: So are they supporting you in that kind of appeal to the insurance company?
[00:18:26] Speaker A: Yes. She, the last I heard was the physician up there was trying to like, be a part of Aaliyah's insurance, like, network, so that way she'll be considered like, in network.
But I say I messaged her last month and there was still no real update. So just a waiting game at this point. But that's our goal, was to still get her into that program, even though she is doing really good on her own.
[00:18:56] Speaker C: Yeah, it's like a little tune up, kind of intel, a little intensive tune up sometimes for the right family and the right. And the right kid and it sounds likely is right. Well, how are you feeling with all of this? It's a really long journey.
[00:19:12] Speaker A: In the beginning, honestly, I was a mess. It was hard.
[00:19:19] Speaker C: Reeling from the trauma of the NICU when you, like, went right into feeding. Trauma.
[00:19:24] Speaker A: Yeah, no, it was. It was really rough. It was not easy at all. Every. Unfortunately, that time was such a blur.
I don't remember a good portion of it, which kind of sucks because, you know, like, the earlier stages you want to enjoy and remember, but I don't remember a lot except for all of the bad things.
But I'm. I'm managing it a lot better and I. I think I'm finally in like, a better spot. But it did take me time to get there, for sure. It's not an overnight healing process at all.
[00:20:06] Speaker C: No, not. Not even a little bit.
[00:20:09] Speaker A: Even talking to a couple of the mentees that I've been chatting with, you know, we'll exchange videos of like, what our kiddos reacted like when they would eat or have severe reflux, and I have no connection. I've never met these people in real life, but, like, my heart breaks for them because I know exactly what it feels like, and it's just, like, ptsd. I'm, like, my heart starts racing when I see these videos or these kiddos going through. This is. It's just horrible.
[00:20:44] Speaker C: Yeah. Yeah, it really is. How did you find Feeding Matters, or who told you about Feeding Matters?
[00:20:52] Speaker A: We were really close with our feeding therapist, and she told me about Feeding Matters, and she was like, I think there's something you really need. Like, you need to find a community. You need to find some support. Because she could see was very obvious on my face that I was just, like, scared. Scared and exhausted and, you know, just sad or flight. Yeah. Like, I'm just going through this, and I just don't know what I'm doing.
And so I was desperate. I was desperate to find any sense of community at that point. So I filled out the form, and that's when I got matched with Paula.
That was great for me because Paula was super sweet and awesome, and she would give me all these tips and advice, and it was just nice to be able to talk to someone who already went through it.
And it gave me hope because I'm like, okay, well, Penny's doing great, then. I know Aliyah can get there at some point. So it's almost like kind of like having Paula gave me that light at the end of the tunnel, because before, I wasn't seeing any light.
So it was. It was very helpful. And Paula was super sweet. She had me over to her home, and we shared medical equipment, like, that I needed. And she got to meet Aaliyah, and I got to meet her daughter, and just. It was another mom, too, that was there. But, yeah, just sharing advice and tips and tricks and things that work for her. So it was. It was awesome and very much needed. So that's so meaningful.
Yeah.
[00:22:34] Speaker C: Yeah. Do you think that that connection or the power to in general helped at all, in terms of you kind of finding your confidence, too, as like, a parent? Because I think the challenge is you're navigating so many opinions, not only, like, any of your families, but the doctors, the healthc care professionals, anything you see online. It's hard to know what to trust.
[00:22:57] Speaker A: No, it definitely did. Just because, again, like, I don't have friends that are going through the same thing. I don't have family members that have gone through the same thing. Everyone would just tell me, just. Just let her eat, or she'll get hungry enough, she'll eat. Or it's like, if it was that simple, she wouldn't have a feeding tube.
But being around someone who went through it and went through it, you know, successfully, it definitely gave me the confidence and that boost that I needed because I was like, okay. Like, she was doing her own food blend and that gave me different ideas. I was like, oh, wow. Like, maybe I could try to make, you know, my own food blends for Leah. You know, maybe she's allergic to something in the milk. Maybe there's something I'm missing. It just got, like, the wheels of my brain going, you know, it definitely gave me the confidence I needed because I left that day when we met in person feeling like I could handle it a little bit more than I.
[00:24:02] Speaker C: Did going in the advice and like, being there for each other in that way is really helpful. But even just, like, being together and you both have experienced the same thing and know that you've experienced the same thing is so different. That's what we hear so often from families in that program is that, you know, they are hearing that advice of Lily when they're hungry, when you all know that that's not the case for your kids. And so you don't have advice like that from someone who's in the program, whether they're a coach or a parent or a new parent or a mentee or mentor.
[00:24:37] Speaker A: Right.
[00:24:38] Speaker C: And so then after that, you now coach and mentor other parents. Is that right? What made you want to do that?
Because that's amazing, Cheyenne.
[00:24:48] Speaker A: Just because, I mean, again, like, Paula, she changed it for me. And I was constantly trying to figure out a way that I could give back. In a sense, I would always be like, you know, I feel like I'm kind of targeted on Instagram and TikTok. I always see, like, all of these kiddos with feeding tubes. And it's like, I want to give all of the tips and the knowledge that I've learned because I don't know what else to do with it. I'm like, I can't tell.
[00:25:19] Speaker C: You've had this education for three years.
[00:25:21] Speaker A: All these tips and tricks. Yeah. So it's like, I want to do something with this knowledge and I want to reach out to every family I can. So I was trying to figure out the best way I could do that. And that's when I thought about reaching out to Paula and I asked her, how could I be a part of Feeding Matters? And she told me that I could be a coach. So I. I thought that was a great opportunity. So I definitely wanted to be a part of it so I could help someone else. Because I know in the beginning for me I was lost and I wanted that person to talk to or that person I could text to be like, hey, is this normal? Or did you experience this?
So I want to be that someone for someone else.
[00:26:01] Speaker C: Oh yeah. That's amazing.
Thank you for doing that because so it means so much to our families. And I mean, as you know, when someone is there for them.
And we as an organization are really grateful to you for doing it as well because it allows us to be there in a different way because we try to give advice or information about pfd, but there's nothing like having you all be there for each other.
[00:26:27] Speaker A: Hopefully I can just continue to help families. As you know, you guys have helped me throughout my journey.
[00:26:34] Speaker C: Yeah, well, thank you for that. What advice do you currently tell families? Or would you like to tell families and share with other families who might be starting their journey?
[00:26:44] Speaker A: I know it seems very, very hard and it might be frustrating. You might hold a lot of guilt, but it's all temporary feelings. And I promise that one day it'll. It'll all be obsolete. Your kiddo will be eating or maybe even if they're not eating, it won't even matter because all you'll care about is that time and like the memories that you spend with your kids. So try not to stress too much about it. Even though it is such a heavy feeling right now, it. It'll go away.
[00:27:16] Speaker C: Wonderful. Well, thank you so much for feeling comfortable enough to share your story. We really appreciate it and I really thank you for your time and for all that you do for our families too.
[00:27:27] Speaker A: Yes, no, thank you for chatting with me. I really do appreciate it.
[00:27:32] Speaker D: When supporting a loved one with feeding differences, it's easy to feel like you are alone at Feeding Matters. Our hope is for you to find the community resources and support that you need through our Power of two Parent to Parent mentoring program. Parents in need of support are matched with one of our volunteer family coaches who have lived experience with their own child and can offer emotional support, resources and guidance to lessen the isolation that families face with pediatric feeding disorder or pfd as well as avoidant Restrictive food intake disorder or arfid.
Families can request a one time phone call or a three month or six month match by filling out the request form on our website. A family coach will make contact via email first and then by phone or text Message typically within 2 to 3 days for more information, please contact us at 623-242-5234, extension 306 or
[email protected] you are not alone.
[00:28:46] Speaker E: Wouldn't it be great if you could access some of the best sessions from the Feeding Matters International PFD Conference whenever and wherever? Well, good news, you can. Our On Demand conference lets you access key sessions and more on your own time. You'll get high quality recordings of sessions that discuss the intersection of food insecurity and feeding disorders, that explore how a holistic, multi domain view of PFD improves diagnosis and treatment outcomes, that identify actionable steps that will propel the field of PFD forward, and that answer the question what does success look like during the Shannon Goldwater Summit for Change? All of these amazing on Demand offerings and more are available for viewing beginning March 1 through April 30. We have great on demand pricing for families, students and healthcare professionals, including a healthcare professional's group rate. Visit feedingmatters.org conference to view the on demand agenda, see available CEUs and register today.
