Episode 53: Mom Journey - Untying Oral Tethers w/ Cassandra Thompson
Jacqueline Kincer 0:03
Welcome to the podcast Cassandra, I have Cassandra here. And she is the creator of a really amazing Instagram accounts called the unbound network. All one word, no underscores or hyphens or anything. And she is the mother to Marie, and she’s a mom advocate. And I asked her to come on the show today to share her and Mary’s journey through the world of ties. So welcome, Cassandra. Thank you. Thank you so much for having me. Oh, absolutely. And I mean, there’s so many places that I’m sure we’re going to go today as we’re chatting. But I don’t know if you found me or I found you. But as soon as I found your page, I was like, This is so amazing. This is like what I, I want parents to see, I need to update my tongue tie guide that I give all of my clients with a link to your Instagram because the content you’re putting out is so well explained. And I kind of feel like I’d rather just share your posts and reinvent the wheel because they’re just so good. And you really get it because you’ve just been through it. So I’m excited for us to dive in and talk about your journey with you and Mari and I actually just for the audience, because they probably haven’t seen your page. You know, just just tell us a little bit about your journey to becoming a mom and anything you’d like to do to just let us know a little bit about yourselves.
Cassandra Thompson 2:10
Yeah, so first, thank you for those amazing compliments. That means a great deal. Yes, so I am mom to my amazing 14 month old daughter, Laurie. She was born at the very beginning of the global pandemic in May of 2020. After four years of infertility struggles, so she is our wonderful, tenacious, vibrant sunshine of a rainbow baby. I’m very lucky to be her mom. And the journey that we had, and are still on was very challenging, especially in the beginning. My goal was to be a, you know, first time mom who exclusively nursed and breastfed my baby. And from day one, we had struggles. So I have created the unbound network to just sort of share where where we went and where we are and try to spread information and education to other parents. Because the journey was really tough for us. And it’s really tough for a lot of parents.
Jacqueline Kincer 3:41
Yeah, I love that so much. I wish you were around when I became a mom eight years ago, because I think I would have found so much support and just solace and you sharing what you’ve gone through. And you answered one of my questions, which was did you plan on breastfeeding? So you did. And you had struggles from day one? Like yeah, and, you know, you and I both know, that’s not always the case when it comes to this stuff. But what was it like? How? How did you how did the struggles present themselves? And what did you experience?
Cassandra Thompson 4:16
Yeah, so so the first day, so Mario was born around noon, and by about 6pm, my nipples were already very cracked and painful. And starting to bleed. And Mari had nursed pretty consistently. She would nurse for a couple of minutes, and then she would fall asleep. And then she would nurse for a couple minutes and fall asleep. And it was a seemingly endless cycle of this. But of course she’s brand new to the world. And she’s been through you know, we had a very, very long labor And she’s exhausted. So of course, she’s tired. And finals are hurting. I’ve never done this before. And so you know what it all just sort of immediately initially seemed normal and expected. We left the hospital pretty quickly, about 30 hours after Mario was born, we had been there for multiple days. And we had seen a lactation consultant the morning after Laurie was born. And she came in for a few minutes and, you know, looked at Mary’s latch, and they explained that it was painful. And she could see the chapping and the blisters that had already started and, you know, the bleeding that was already happening, and she helped me get a better latch, which was like the first time it had not been painful. And then within, you know, maybe 15 seconds, Mary’s lip was right back to being tucked in. And it was painful again. And, you know, it was just sort of stated that we just kind of had to practice and we had to, you know, just just keep working on her latch. So we went home, and I continued to nurse her as often as she wanted, which was very, very often, again, seemingly expected. And still, it would be you know, she would nurse for a couple of minutes, and then she fell asleep. And nothing we did would keep her up. The nurses originally told us like, Oh, she’s, she’s a lazy feeder, or lazy nurse or just stripper down and keep her cool and tickle her feet or her bath, try to keep her awake. And I mean, really nothing we did would would work. She was just, she was just asleep. And then she’d wake up immediately and be hungry again. And you know, when when we weren’t nursing, she would arch her back, and she would kick and she would push off. And grant she had this very cute little granted that she would do and, you know, it, it all didn’t, didn’t initially seem to be an abnormal experience. Because everybody said that it wasn’t. And so we just kind of continued. But day three, we had a decrease in her diapers. And that was a little concerning. She slept a lot that day. And I remember my husband and I talking about, you know how tired she was in a lot of sleeping newborn she was and and at some point that day, I had her wrapped in a yellow blanket. And I thought, Wow, this simple blanket really is making an impact on the complexion of Maori skin like she looks. She looked yellow in this blanket. And our first pediatric pediatrician appointment was day four, the morning of day four, around 10am 20 minutes before we left the house, my milk came in. So we went to the pediatricians office and she took one look at Mari and her face changed and she said to us, this baby needs help. Oh, no. And my entire body just say and she looked at us and she said she is fairly responsive. I need to get formula in her now. Wow. Is that okay? Of course, yes. Okay, so she went and she got a little, you know, little bottle of formula and gave it to Mary and her eyes kind of opened a little bit, which, in retrospect was the first time in a few hours that she had had her eyes open. You know, we just really feel incredibly guilty about this, but we didn’t realize what was really happening which was that she was lethargic, and
Cassandra Thompson 9:18
and had just had started to develop jaundice. And it was a really scary moment. And so she was able to give her the bottle. Mary took very, very little of it. And our pediatrician asked if I wanted to try nursing her she she asked if we wanted to do a waited deed. So we did she said she was going to give us 10 minutes and then that time she expected X milliliters to be transferred and you know, we would go from there. And she ended up being delayed and Mari nursed and we went back and forth from nursing and sleeping and nursing and sleeping over the course of about 25 Minute. And Mary had transferred like 1/5 of what Peter trician wanted to see. And so that that was our I mean, that was our first four days things didn’t go well. And it was pretty scary actually. Wow.
Jacqueline Kincer 10:21
Yeah. Wow, I am. I am like it’s a page turner right there with you, as you’re telling this. And I just have to say that your memory is incredible.
Cassandra Thompson 10:30
Jacqueline Kincer 10:33
find that there for me to remember. I mean, the fact that you knew what time the pediatrician appointment was under new sleep, new mom fog, you’re incredible. And yeah, I find, you know, gosh, it sounds fine line is like a lactation professional to kind of do a wait and see or tell someone, it’s okay. Things will improve versus, you know, really needing to intervene, right? And then unfortunately, yeah, you’re out of the hospital, and now you’re home with this baby. And you’re not going to have anyone check her for a couple days. So that’s a big window of time in, you know, babies really early life. So I think you captured that beautifully with what you were saying so. So you did that waited feed, things were not what the doctor was hoping for. I am actually impressed that the doctor knew to do a weighted feed that was like, wow, I wish more would do that. How did you feel at that point? And what was the plan you were given going? Going forward?
Cassandra Thompson 11:46
Yeah, so I’ll say that. That day, is definitely unlike my top five worst days of my life, I felt really guilty for not seeing it for not understanding. As I mentioned, she was born in May 2020. So one of the reasons we had to go on day four versus earlier to see her pediatrician or a pediatrician really, was because so many doctors in our area, were actually furloughed because of COVID. And, you know, lactation support in the way that it is typically regularly available wasn’t available to us at that time. So there were a lot of emotions about just, you know, knowing that our daughter was not doing well, feeling all of that guilt and heartache and sadness and, and just sort of being in the situation that we were, the plan was because my milk was just coming in that the goal really was just to get Mari fed, to make sure that she could get nutrients, and that she was having diapers that needed to be changed, you know, certain number within a certain period of time, we were scheduled to go back to the pediatrician the following day, about 24 hours later, to make sure that things were looking okay and, and monitoring that. So really, it was 24 hours of being completely focused on making sure that she got bed. And for us that meant nursing. And I would nurse for about 45 minutes again, she would fall asleep and wake back up and fall asleep. And I do that for about 45 minutes. And then after we would give her a bottle of formula. And she would drink it so fast. And she didn’t fall asleep the whole time. And I was like oh wow, she she really likes formula. You know, she really likes this bottle. So there was also some confusion there for me as well. Like I remember questioning, you know, why is she staying awake for the bottle and is falling asleep when I’m trying to nurse her and thinking like, oh, maybe she’s just really cozy with B and it’s comforting. And like, of course that’s probably true. But there were much bigger things at play. Yeah, yeah. Oh,
Jacqueline Kincer 14:35
gosh, that makes so much sense. And it’s interesting to hear your your perspective of that. I know a lot of times some moms will feel to like, the baby doesn’t like breastfeeding. They like the bottle. And I’m like, oh, it’s not really a personal opinion or they’re not. They’re not quite there yet developmentally. Yeah, this is a very, very common thing that happens. And were you advised at all to also pump? Or was it just breastfeed and give bottles of formula?
Cassandra Thompson 15:14
Yeah, that’s a great question. So, at that point, the only guidance I really had was from our pediatrician. And truly her perspective was, get the baby fed, get my fed, get her healthy, get some weight on her. By day four, she had lost over 15% of her body weight. And she was born at under seven pounds. So she was not a big baby. So the that goal was really the focus. Her pediatrician, I think, really wanted to not pressure me to nurse to breastfeed. To the point where I think it’s sort of, I think she wanted to make sure that I didn’t feel like I was failing. But my goal was to exclusively nurse her. So you know, the, the push for formula, which in our early days was clearly very necessary, was really the focus. I started pumping. Three weeks in, it got to the point where Marie was just constantly nursing, and I was in so much pain, that I just really got to the point where I said, I can’t I can’t, I can’t go through this anymore. And also started to question, you know, what was wrong with me with my pain threshold or my body that so many women for, you know, so many years have done this? And I can’t, you know, why? Why am I not able to work through this and just push through. But ultimately, I just realized that physically, it was taking a toll on my body, and that I needed something to give. So I decided because I still wanted to nurse her and Mari was still very interested in nursing. She was always rooting and looking for my breath. And it was something that we both, you know, I think naturally, she wanted just from a survival perspective, and something that I wanted from a connection perspective. So I, I decided to move to a system that worked for us for quite some time, which was that I nursed her once a day. It was always the morning feed when I was most full. It was easiest for her, she focused less at the breast I noticed in the mornings. So I would nurse her in the morning, and I would pump immediately after and I continued pumping throughout the day, and eventually transitioned to exclusively pumping and did that for 11 months. Wow.
Jacqueline Kincer 18:08
Well, I mean, so amazing. I, I like that you recognize kind of what your own limit was. And I like that you mentioned how that experience shapes how you felt about you. Right? So I, my therapist likes to tell me that humans are meaning making machines, right. So any event that happens in our life, we find a way, it’s just the way our brains work. We want to make sense of the world. So we make a meaning of something. And so your brain made this meaning that something was wrong with you. Why couldn’t you tolerate the pain, right? And just a quick side note, I will never forget one time I had a patient book an appointment, she came into my office and I said, you know, what are you what are your goals with breastfeeding? And she started crying. And she said, I don’t know what’s wrong with me. I just want you to teach me how to tolerate the pain better. And I was like, and I think I had my intern at the time. And I like looked at her and I looked at this mom and I was like, wait, what? I am not going to do that for you today. There is nothing wrong with you. You’re in pain. Let’s fix it. She was like, but it’s just every other mom can do it. Right? I was like, no most of their moms give up. So thank you for sharing that because gosh, there’s so much that goes into it right? So you’re you were ending up exclusively pumping Then did you find at some point you no longer needed the formula with her that you were able to just provide breast milk. Crazy question
Cassandra Thompson 19:57
so so I exclusively pumped in To 11 months, as of six, when Mario was six months old, six or seven months old, we stopped our sort of nursing session. What I didn’t know was that by the time I started pumping it three weeks, my supply was nothing. I had been experiencing multiple levels of pain, again, I just assumed like, oh, that’s just part of breastfeeding, right? Wrong. Um, you know, so beyond the chapped nipples, and all of that, I also had a few days, genuine pain, I now understand that. And I knew that I had a club duck. But that I believe was the moment that my body said, Oh, if you’re not actually needing this milk, we’re going to stop producing it. So by three weeks, when I started pumping, my supply was very, very minimal. I was pumping about half an ounce combined, per day. Eventually, I was able to get that up to four, and then started to see progress and slow progress. So over the course of about six weeks, maybe seven, I was able to go from half an ounce to producing on average, about 20 a day, we had one single day in Marty’s life where she was exclusively, breast milk fed, just one day. So my supply never fully recovered. But I was able to get to a point that I never thought I would be able to my first started honestly, when you are working so hard to try to produce milk, and you are getting droplets, and you’re tapping those droplets out of the bottle to hope that you can provide a single SIP to your infant. Those are really tough moments. And that journey and process was really difficult. Wow. Yeah, it is.
Jacqueline Kincer 22:10
It’s incredible that you kept going, despite kind of getting no real positive feedback loop going on. Right? Yeah. Um, so when did you? Or maybe I’m putting the cart before the horse, but how did you find out about Mari having ties of any kinds? And yeah, where? What point in the journey did that happen?
Cassandra Thompson 22:35
Yeah. So. So it sort of came about in a really strange way. I think. I had done a virtual meeting with our local chapter of the Lecce league. And I had been told from the beginning, that the issues that we were having had to be connected to my low supply. When I started pumping, and saw that I was producing nothing. I was like, Well, yeah, of course, I have PCOS. So it was assumed that my PCOS was why I didn’t have adequate supply. And so I, I went to this virtual meeting and one of the leaders sent me some incredible information about the correlation between PCOS and hormonal imbalances and low milk supply and what can be done and you know why it happens? So I kind of started down this like research rabbit hole of why do I have low supply? It just so happens that I have a friend who’s who has a son who’s much older than Mari he’s around 14 years old right now. And at some point, years ago, we had talked about how she as somebody also with PCOS, struggled to nurse and I happened to text her and say, like, hey, like, did you ever have success? Or do you have any tips for me? Like, you know, what can you share with me? And she shared that in addition to having PCOS, that her pediatrician told her that, quote, her milk was bad. And discovered that her son had a high palate. And we just sort of talked about, you know, all of these challenges that we both faced separately. And out of empathy, I started down another research rabbit hole, about what does it mean to have a high palate? What is that? And I remember Mari was sleeping next to me. It was like two in the morning and I totally should have been sleeping. But I just was so interested in everything that I was sort of learning i i went from high palate and low milk supply to learning about have oral restrictions. And I happened across this mom’s blog, where she just talked all about the experience, she her child. And I just started sobbing. It was so reflective of everything that we were struggling with, and made me realize things that I didn’t even know we were struggling with, or more specifically that Mari was struggling with. And there was this moment where I was, like, wow, I, I have cracked the case. I know what’s going on. And I closed my computer, I felt a lot of relief and a little hope. And I was like, in the morning, I’m going to figure this out. And so the next morning, I happen to have a client who is a dentist doesn’t specialize in in pediatric dentistry, or ties. But we’re close and I trust her and I was like, hey, you know, do you know anything about tongue ties or lip ties? And she was like, I know a little bit why. And so I just sort of explained what was going on. She’s like, well send me some photos. I send some photos of Mary’s lip. And she was like, oh, yeah, but that does look a little alarming, but I’m not really sure. She sent me to resource a friend that she had, who is a pediatric dentist, and she came back and was like, Yeah, this looks concerning. And you should have it, you know, a dress, talk to your pediatrician. And we did that. We were referred to an e and t after our pediatrician told me that lip ties don’t affect nursing, and that tongue ties are a fad, and that moms are choosing to have surgeries done to their babies, like Botox. And, you know, I left that
Jacqueline Kincer 26:57
hold on our moms do Botox on their babies.
Cassandra Thompson 27:01
I mean, she was saying like, you know, Botox is a choice, right? Like, they’re doing Botox, and why, while they’re at it, why not add a cosmetic surgery for their child right for the ring? I’m so crazy. Yeah, so after that appointment and correspondences, she referred us to an e and t. That was also a terrible experience. And I left that visit. I mean, the being told that the issues that we were having had nothing to do with ties, because in this EMTs experience, only once Had he ever seen a tongue or lip tie that actually affected nursing. So the likelihood that that’s what was happening was highly improbable. He says, um, and, and proceeded to tell me that sometimes for moms and babies who are trying to nurse, they just don’t connect. And that that needs to be okay. And as a first time mom, I’m nervous. And I’m looking into things. And, you know, he confirmed via the virtual session that we had that Mary had a lip tie, he had us kind of lift up her lip, and he was like, oh, yeah, she’s a lip tie. You’re not gonna, you’re not going to worry about that don’t address it. If you decide to it won’t be till she’s at least six years old. So why don’t we have a follow up in three months just to make sure things are going okay, definitely doesn’t have a tongue tie. So I was super confused. Understandably, right, so confused. And I sat on all of that on all of those opinions, personally, medical opinions that I had received for a couple of days and felt like really low and also felt silly and a little crazy. Like, oh, well, I guess there’s no possible way that I could, I could diagnose my child with something, right. And that, even though this mom who shared the exact same experience with me years ago, in a completely different part of the country, says that this is what was going on with her child. Apparently, that’s not what’s happening with my child. So I sat with those feelings for a few days. And and then I just kept going back to like, but that dentist said, and but this author mom experienced this, and what if they actually don’t know what they’re talking about? Which felt really arrogant of me to think because who am I? I’m not a medical or health professional. I’m just a mom. Right? And I’m just a mom.
Jacqueline Kincer 30:00
If you’re I wanted to chime in and say you’re making me think of that meme that says a worried mother does better research than the FBI. Like, when someone says, I’m just a mom, like, no moms or moms are powerful,
Cassandra Thompson 30:16
everything, right? That’s their everything. But when you are being told by the medical and health professionals that you’re supposed to trust, to guide you and your baby, and you feel that they are possibly, or probably wrong. That’s a really layered process to go through emotionally. And of course, in the meantime, as I’m researching and continuing to kind of look into this, I’m learning, you know, what it means to fix a riptide because at this point, we only understood that Mari had a lip tie, you know, and that meant surgery. And that means pain. And insurance doesn’t cover it because she’s not over the age of six. And my husband is like, well, they said this, but you’re finding this. So we’re just in this really kind of strange place. And I eventually found of all things a Facebook support group. And I, I, I requested to be part of this group. And I submitted this post that honestly, I think if you printed it out was like four pages long. Here’s here’s what we’ve experienced from day one. Here’s what I have researched. Here’s what I have been told by my pediatrician and by an EMT that I saw that I had read through in that group, other moms, recollections and recounts of what they experienced, and again, saw so many similarities. And I just in that very long post, I was like, I just don’t know what to do. And I was so shocked and eternally grateful. That I mean, I think it was like 70 moms and medical professionals and health professionals came and commented and like pointed things out that they noticed in the photos that I had posted and called out, you know, the things that they felt need to be called out and they were like, You need a lactation consultant immediately. And you need to make sure that they’re trained in oral restrictions and ties, and you need to find a chiropractor for your little girl. And you need to find a pediatric dentist, and here are some resources for you to look at. And I was like, Oh, we have a community that’s trying to help. And all of these people who are saying trust your instincts, and that was how that was the whole process. It was really long. And ultimately, exactly what we needed to find he did. So Mari was six weeks old when this started. She was seven weeks old when we were able to get an appointment with a local chiropractor who also performs cranial sacral therapy, and specializes in treating infants and children with oral restrictions, amongst other things. We had extreme difficulty finding a lactation consultant at the time because of COVID. I mean, in general, finding a Thai educated lactation consultant can be challenging, but certainly during that time was and we had Mary’s releases ultimately done at 10 weeks old, we learned that she had a significant upper lip tie, and that she had a extreme posterior tongue tie. We also at the time learned that she had small tiny buckle ties on her upper cheeks on both sides. It was believed at that time that they were not impacting her struggle, but certainly known by the severity and the thickness of her lip tie that that was an issue and that her tongue was significantly restricted.
Jacqueline Kincer 34:46
Wow. Wow. Yeah. And it’s it’s interesting to hear you say that it was kind of this long time of finding and figuring things out which it was especially when you’re in it All day every day with this little baby. But then I kind of have like a different bird’s eye view as an ibclc. And I’m like, you found out a lot more quickly than a lot of people. Which is sad, right? Like, you know, one of the things that I like about what you’re telling us is that there are there’s a lot of questions I get from parents, which is when when they do find out about the ties, however they do, beyond that newborn stage, and they say, Oh, well, I guess, I guess we’re just kind of screwed, like, you know, and I’m like, no, no, you can still treat it. So thank you for sharing about the timeline and everything. Because even if you’re finding this out, and a six month old, is absolutely can still be treated. And it’s going to be kind of, you know, a similar thing to what you were saying. So you sounds like in that group that you were in, you were directed to all the right things. Yeah. So you started with the body work? And then you got the release? And then did you end up finding lactations to work with or no, because there, they weren’t available with COVID? And everything? Yeah, so
Cassandra Thompson 36:10
we found we ultimately I was able to find a lactation consultant. Actually, before the release, I think some I want to say probably around seven weeks, I was able to find one. But at that time, everyone was on lockdown. And the virtual sessions for ibclcs. And lactation consultants, wasn’t really they weren’t really happening yet, because nobody had those systems established yet. So I was able to find a wonderful ibclc, who was a retired nurse. And we texted and I sent videos and photos over the course of like, you know, multiple days, we had multiple phone conversations, and she, you know, it was passed, we could just navigate it, what we could, we were also at that time, when by the time we found her, we were maybe three weeks into a battle with brush. And so and I had just started pumping, and you know, so having somebody to guide us and confirm that what we were experiencing, was probably linked to Mary’s ties, and help to guide me and my pumping journey. And, and frankly, what actually is really alactic a relaxation journey, essentially, and helped guide us with dealing with brush and all of that was really, really helpful. Yeah, we did the best we could.
Jacqueline Kincer 37:51
So yeah, you did and really quite resourceful. Because, gosh, going through all of this in the midst of COVID, especially the beginning of COVID is crazy. I saw colleagues who just were like, I’m gonna close my practice. And I’m like, wait, no, we can’t No, let’s just get you set up on telehealth or whatever, you know, or, but it was hard because we were sort of the last, you know, the bottom of the barrel in terms of like getting PPE. So like my neighbor, for instance, who works with cancer patients in the hospital, they were selling homemade masks. And so what am I what am I going to get when we can’t even have this nurse who works in oncology with actual PPE, right? So that was a big fear for so many and just so crazy. So I’m glad that you were so resourceful, really, and being able to get connected to these people during that time. That’s incredible. Now, I did want to ask you about going going in for the procedure. How are you feeling about that? You’ve got your answers, but I mean, were you like, okay, yeah, we’re ready. This is great. Let’s do it. Or did you feel anything else about that? Yeah,
Cassandra Thompson 39:05
I mean, I think excitement was definitely not a list.
Jacqueline Kincer 39:09
Not Yeah, I asked.
Cassandra Thompson 39:12
There. There were a lot. There were a lot of layers. So So first, I’ll say, I am very, very lucky to have an incredible partner. My husband is amazing. And I know most most Why’d see that. But, you know, he was not convinced that I was on to something through this whole process. When we saw the medical professionals initially that we did and got the responses that we did. He didn’t pack things up. He wasn’t like, Okay, that’s it, you know, it’s, it’s over. Like he was like, Should we listen to them? You know, like, you found this random Mom Blog, like, who knows that woman could be crazy. Right. And so as things kind of continued he was nervous, he was nervous, nervous about all of it as I but I think for, for different reasons, you know, I was most concerned that we were intentionally, potentially going to put Mary through pain. And that we didn’t know for sure if going through that process would help her that that was a significant conflict within both my husband and I. Just this, this thought of what if we do it, and it means nothing. That was very heavy for us. And, you know, with all of that, though, I really just had this innate feeling, this gut instinct that said, this is what’s happening. And this seems to be the only way to help her. And I would do anything for my daughter. And maybe, maybe that also means having to put her through this one minute procedure, and three weeks of stretches, so that she can maybe have a chance of not being colicky, not having extreme painful gas every day, and not having to arch her back when she is laying down because she’s in pain, and having the ability to close her mouth, and not just rule and control milk when she’s sucking on her bottle. Like maybe just maybe this will help her going in for the procedure. As I mentioned, she was 10 weeks old. And at that time, lockdown restrictions were fully or fully there in Boston, in the area that we’re in, and one parent was allowed to go in. They suggested that if I was still nursing at the time I was that I nursed immediately following the procedure. So that automatically meant that my husband stayed in the parking lot. And we FaceTimed him. So the whole process was really difficult. And they took they showed me how to do post care stretches with Mari and, and with my husband again, through through FaceTime. And we filled out some more paperwork, and they told me they were going to take her a bath and swaddle her and put some glasses on her and take some photos and they would be back as soon as they could. And they took her way, which was the first time ever that she had been away from me, ever. She, you know, we didn’t have visitors and nobody was there to help us because of COVID. And, you know, it was the first time she was out of my sight. And I could I just remember her screaming and crying. Heartbroken, like sobbing in the dental chair, my husband on FaceTime in front of me also in tears. And there is this moment where her screeches and her crying got more intense. And I thought, oh my goodness, why did we do this? Why are we putting her through this? And getting teary eyed. And
Cassandra Thompson 43:52
I’m a nurse brought her back to me. And she was crying so loud. And it was so forceful. And I thought to myself before I could see her I thought this was a mistake. We shouldn’t have done this. She was just torture. This is this was a horrible decision. And they handed her to me. And I looked down. And I realized for the first time ever, that her tongue was hitting the roof of her mouth. Wow. And you know, in cartoons when they show a baby crying, sometimes the tongue will kind of below your tongue was doing that. And her mouth was so wide open that I could see all of the thrush plaques that she had for the first time. And in that split second as I’m undoing my nursing bra to try to bring her to my breast I thought, Whoa, this was absolutely the right call, look at what she is able to do different. I placed her on my breast, and she nursed. And instead of falling asleep in a minute, she fell asleep in two minutes. Which about like a great victory. For her, yeah, there was still pain, but not as much pain. And she immediately fell asleep. Like really fell asleep. I put her in her car seat by the time we got to the car, she was just she was passed out. And, you know, the procedure going through that process was really hard making the decision to do it was really hard. But I know, without question, that my daughter would be an incredibly different child. Right now, had we not pursued it. She, I realized later, was suffering on so many levels because of this challenge. And to think that she could have gone through those struggles, and more for more than two and a half months. That really breaks my heart. So when I see other kids, other infants, other babies struggling, I go right back to that thought of, well, that Vbi is seven months old, and they’re still really struggling in that absolutely could have been hard. It makes me so sad. It really breaks my heart.
Jacqueline Kincer 46:56
I love that you shared that and how, probably just in a matter of seconds after the procedure you went from Oh, we totally messed up to oh, there was no other way we could have done this. And I think that is a really common thought process for moms and dads. Yeah. Because when you are on the other side, which is like a lot of my job when I work with people before and after the ties getting released is just supporting them through that, that really big hump of procedure day, because I’m like, I’ve seen it so many times that I know what the other side looks like. And there is a pot of gold at the end of that rainbow. But when you’re at the top of that rainbow, it looks like you’re gonna fall down and crash to your deaths. Like it is not a pretty sight. And it is really hard. And as much as you know, like you said the procedure when you had it done for Mari was quick. And she was in pain. But then she calmed down and she fell asleep, which is totally normal response when you’ve been through something like that, right?
Unknown Speaker 48:05
For her, it was
Jacqueline Kincer 48:08
a much smaller blip in time that wasn’t entangled with the complications of our adult human emotions. Right and, and all that sort of download and having to trust and you know, how, gosh, just so much. So you and your husband’s Poor, poor guy, I love that you’ve faced times that he probably felt so helpless, right? He’s in the car, you’re crying, the years his child screaming,
Cassandra Thompson 48:37
youth crying, we’re all crying. We’re all crying from different different space. It’s
Jacqueline Kincer 48:41
all like this. You know, that is? That is so hard. Gosh, I’ve assisted with a number of frenectomy is during that time and I can’t say that anyone FaceTime to their husband? Probably not intentionally. There isn’t a good signal in the building that we do. So maybe that’s why but yeah, I love the you guys did that. What was it like? You get married Mary home, then then what are things like that? Is it better?
Cassandra Thompson 49:08
Yeah. So. So we had actually, luckily, we had this amazing body worker that we found and we had had a few sessions with her prior tomorrow’s release. And we had already seen some really important improvements. She would go through bouts of going from extreme constipation to having massive blowouts. I know and understand now but didn’t have the time that she was an excessively tense baby. So having those few sessions before the release actually started to show progress in terms of her digestive system overall. But So she would after every session, undoubtedly she would, she would poop in the car ride home every single time. Like, without, without question, it was just bound to happen. And actually, it was funny because my husband, when we would go to these appointments, you know, it looks like they’re not doing anything. They’re just kind of holding your infant and you’re like, Is this even gonna make a difference? And it wasn’t until the third appointment prior to release it. My husband was like, so I guess this is helping. And I was like, Oh, for sure, right. Like she was actually like having movements, which was great. She always had a really very hard distended belly. And I just assumed that it was always due to constipation, which certainly there was a portion to that. But within the first six hours of the release, post release, I gave Maria bath a nice warm bath, I took a bath with her and I noticed that her belly was less firm. Ah, that’s interesting, right? Nursing still continued to be a bit of a struggle for us. But she wasn’t falling asleep as easily or as quickly. That felt like progress. She stopped being as colicky almost immediately, she cried a lot less. And so we started to actually see immediate progress and immediate positive signs and shifts in her symptoms and her struggles within the first, let’s say six to eight hours. The next morning, you know, I had only lurched her a couple of times during the day, which, as I mentioned previously, we were really only nursing once in the morning up until that point. So the next and I you know, I continue to pump and we continue to give her bottles for the majority of the day of her release. So the next morning comes and I get the pillow set up the very specific way that Mary liked. And she only nursed on one breast and in one specific position, and I get I get us all set up. And she nurses. And for the first time, I can feel that she has drained my breast. She knew the brain, right, so exciting. I timed it, she did it in just over eight minutes, which was such a drastic change from our 45 to 60 minutes sessions of falling asleep and waking up and then her not actually doing it and having to pump afterwards anyways, and then give her a bottle, right, this whole triple feeding process. So she drained my breasts in eight minutes. She stayed awake the whole time. Her hand was on my body. And she’s kind of playing around. And I was like, Oh, this is different. And it was actually, I think, perhaps most remarkably, and most notably, the first time I remember enjoying really enjoying nursing her versus just enjoying the idea of nursing her was so impactful. And it makes
Jacqueline Kincer 53:31
so much sense considering where you were at. And I love that you pointed out a few times how Mari was suffering? Yeah, she was uncomfortable in her body. And all of these things that it was this cascade of of symptoms that occurred because of her ties. And I find so many parents are hesitant to put their baby through the pain of the procedure. But like you said it was just a minute. And what what we wouldn’t do as parents to trade one minute of acute pain that then ends and heals versus weeks or months, or possibly years of cron actly. Exactly. Yeah. And and that point right there, Jacqueline.
Cassandra Thompson 54:19
That is that is the conversation that my husband and I had that ultimately led us to agreeing and feeling as comfortable as we could in the decision to pursue her release. That’s really what it was. She’s already in so much pain. She is suffering. If there is a chance. Why wouldn’t we take it? Yes. And you two were
Jacqueline Kincer 54:49
in pain, right? So you weren’t nursing very often directly at the breast because of that and I know sometimes it comes up I don’t know if this came up for you where moms will say well that’s self pushes me to put my baby through pain. So I’m not in pain. Did you encounter any thoughts or feelings around that?
Cassandra Thompson 55:06
I have to say I think I, I was lucky that I stood pretty early on that hurt issues. While I was experiencing problems and pain because of them. I realized and understood that her issues were far beyond me. They were beyond my pain. They were beyond my craft, chapped blistered nipples, that her challenges were something that she was really living with and struggling with.
Jacqueline Kincer 55:41
I was, you know, a peripheral recipient of those struggles? If that makes sense. It does. It does. And I like that you and your husband, were able to come together and make this decision for your daughter jointly. Are there any other obviously you didn’t have, you know, close physical contact with anyone because of the pandemic? But were there extended family members, friends that you had clued into this journey? And if if you did, where are they at on it? Because sometimes we get some unsolicited opinions about things. Yeah, I’m curious how that went.
Cassandra Thompson 56:18
Yeah, I mean, I’ll say I’m, I’m lucky that we have, we have a decent number of family members and in our, in our family, the whole, you know, COVID isolation was very, very difficult for my family, though, not just my immediate, like the our little trio, but my my family in general. I am the eldest of four and have separated parents, I have many, many different pockets of family. And, you know, we have really been trying to do our best to keep everyone up to date on how Mari was doing. But the reality was, one, we didn’t realize the extent of which she was suffering until later. And to, because the vast majority of our family actually works with the public. And we had to be in isolation, because for two weeks after leaving the hospital, because we were potentially, you know, at risk of contracting, and then passing off the virus. And because they worked with the public, we actually, you know, my family didn’t hold her for a very long time. We always stayed distant. So because of that, I was really, I mean, we were constantly sending photos, I checked the other day in like may 2020. And we’re just home. We didn’t go really anywhere with Mari but in that month, I took like 10,000 photos. But we were really focused on sharing, you know who she was, and I didn’t. I didn’t, I wasn’t intentionally doing this, but we didn’t share all of the struggles because we didn’t want that to be part of the story for Mari and how her family experiences her. You know, I did certainly bring, you know, information to and, and share some of the struggles who are having with my parents and my sister who’s now actually a caregiver for Mari. But a lot of it was really sort of just just my husband and I.
Jacqueline Kincer 58:45
Wow, I liked what you said about not wanting to focus on her struggles. Yeah, or you didn’t want to make her identity as this new family member about that.
Cassandra Thompson 58:57
Jacqueline Kincer 58:59
really beautiful. Actually, I kind of wound like tearing up a little bit. One of the things I wanted to ask that you touched on is how, what advice would you give going through this to parents on finding medical and healthcare professionals that they can trust when it comes to these kinds of issues? Because I know that there’s a it’s like a struggle for me because I’m like, Well, I am a health care provider. But I’m telling you not to trust most health care providers, health care providers, opinion on this. I don’t it’s like I don’t want to throw anyone under the bus like I didn’t. Well, I don’t know. I don’t want to sound sanctimonious or anything but I made it my mission before I became an ibclc to get really educated on ties because that was my driver for becoming one. So it wasn’t like I was a lactation consultant who didn’t know and I learned later but I was a parent just like you right so how Do we? We’re not trying to insult anybody, but how do we guide parents? How do we get them to find the right people where they don’t have to spend all these weeks like you did, trying to figure it out themselves? How can we get them connected sooner?
Cassandra Thompson 1:00:14
Do you have any advice on that? Yeah. Yeah. So I think this is, this is such a huge struggle. So So first, I’ll say I think there are a lot of people in the medical and health industry that truly innocently just don’t know. Right. And you can certainly make the argument that at this point, because this is not something new, and because it is a common struggle, but they should, right, that they should be educated, they should have the knowledge. But I think it’s important to recognize it, sometimes innocently, they just don’t know. But what I experienced, and my experience within this was to a much lesser degree than what many other moms have shared with me. But my experience was that I had medical professionals share misinformation. And gaslight me, and just declare what was happening and diagnose, without having the proper comprehension of what it was they were talking about to diagnose. When I have an EMT tell me, yeah, your daughter has a lip tied that they don’t impact breastfeeding or nursing. And that’s, you know, not a big deal. And there’s no way that she has a tongue tie because her tongue can hit her lips, and he doesn’t perform or doesn’t have us perform a comprehensive oral function assessment. This is a big word, but that feels negligent to me. So I I think it’s really important to acknowledge that sometimes we have to bypass people. Yeah, again, I struggled with that and feeling a lot of like, a lot of feelings about that, like, am I arrogant? Am I crazy? Am I Am I just losing it? My obsessing my fixating on something, you know, should I really just stop and listen to what they’re saying. But at the end of the day, for, I think, a multitude of reasons, many of which are very perplexing to me. Ties are controversial. They shouldn’t be, but they are. And so my advice to parents is to seek out the true professionals who can speak to an educate on and have been educated on and have extensive experience in oral restrictions. That is a tricky thing to recommend. Because I think it’s also important to acknowledge, from a parent’s perspective, that those professionals do profit financially, from this struggle. All medical and health professionals profit from ailments though, right. And I had to hold to the belief that anyone who is advocating for and focusing on supporting infants and children, and families through this struggle, are doing it, because they understand the problem, because they understand the struggle, and that they’re not actually doing it to make a quick buck. So, yeah, I think also, I think you need to trust your instincts, even in the face of people telling you not to.
Jacqueline Kincer 1:04:17
I think that’s so important. You know, it’s, it’s been interesting for me, you know, I don’t do the procedure to release the ties, but I’ve seen that argument, you know, oh, they’re charging so much for the procedure. It’s only a minute and I’m like, Well, I’ve been on the other side of things. And those lasers are not cheap. And they don’t buy that tool because they want to be able to charge their patients a lot of money. A pipe by it because it’s the best tool for the job. It causes the least amount of pain, the least amount of scar tissue. It is very quick, it’s accurate, least amount of bleeding. Isn’t that what we all want for our babies? Write the least amount of trauma possible for something traumatic. And then there’s the training on how to use it properly. I tell people all the time, just because you found a dentist that has a laser does not mean they know how to release a tie properly. They may have money to invest in like that, have they invested in the training? Right? So that’s, that’s another question that we have to ask. So I think you bring up a lot of important points. Because, you know, I, I feel like I’m like a salesperson for other professions. Sometimes when I work with parents, I’m like, Look, I could be your lactation consultants like and have a lot of appointments with you always giving you, you know, little things to do that would kind of maintain breastfeeding, but never really fix it. And I can make a lot of money off of that more, I could send you for this procedure where you go pay someone else that doesn’t pay me, and you could get that fixed. And then we’re not going to work together for that crazy long, or, you know, or you’re going to give up breastfeeding or whatever, right. So I tried to tell people that and I’m like, you know, I don’t get kickbacks. Don’t pay me. I think maybe, sometimes we meet up and they might buy me like a coffee. So but I feel like I’m buying them coffees all the time to like, it’s just, you know, it is how it is. So, I do think most people do have a pure heart and intentions when we get into this world work. Because of parents like you, right? We’re like, man, we don’t want other parents have to go through this sucks. I wish there was a better way. I wish we didn’t have to do a surgery to help these babies. And I know, you and every other parent out there wishes that too. So it’s really important that you’re sharing your story. And oh, my goodness, I just, you know, have way more questions for you. And I think we could go on and on forever, about things. But where are things at now? Because you said at the beginning of the episode, you know, there’s a lot that’s transpired Mario’s 14 months now. Yeah. So you’ve gone from the stuff, you know, in the first few months of her life, and then, you know, you do these oral exercises, and you’re going to the chiropractor, and you’re still pumping and all the things. So how do we tie in to where you are today? Yeah. So So yeah, so we have we have a rambunctious, curious, wonderful 14 month old now.
Cassandra Thompson 1:07:33
And, you know, I mentioned that we saw immediate improvements for for many of Mario’s symptoms, somewhere within the first few hours, somewhere within the first day or so, some in the first week and mom, but she actually still struggled with certain things for quite some time. for about four months, after her releases, Mari still clicked a bottle, we no longer had to remove it from her mouth, every sock in order for her to have control of the milk in her mouth and swallow it. So that was great. But we, we still had clicking, she still struggled at the breast in in certain aspects. She still preferred only one breast. She refused the other, she would only nurse in a specific position. She also always had extreme tension in the beginning, post release last year, it significantly decreased. We had five weeks of two sessions per week of bodywork, a combo of Cairo and CST for Marie. And then after that five weeks of one appointment per week, she still had tension residual. It wasn’t as much as it was. So the improvement was dramatic. But she still had it. And after she hit certain milestones, so every couple of months, I realized that she would be more tense and we would need to kind of go back to the chiropractor and get her to have an adjustment. So when she started crawling around six months, we had to have an adjustment. When she started pulling to stand we had to have an adjustment about a month and a half later. And so every now and then we would kind of have to take her there. She met most milestones within a typical range. A couple she hit very early because of her excessive tension. So you know, turned out that her attention actually caused her to be so stiff that she was rolling from her belly to her back at nine days old and we thought, oh my goodness, she’s so strong and amazing. And now I’m like, oh my goodness, she was like a stuffed armadillo. But she boasts milestones within a normal range. And around 11 months Mari was chatting up a storm. And one day somebody had asked me like, oh, is, you know is is Mari speaking now. And I made it a task of like, noting at that moment, all of the words that she was saying, so it was like mama and Jada, and our dog’s name and her cousin’s name, and she would say chicken, she’d say, in at like, 11 months old. She was saying chicken and asking for it. And yes, and no, she had 21 words that she was saying regularly, very regularly. And she was pulling to stand. And I noticed that when she was standing, she would arch her back in a way that almost looked like upside down question mark. And we always struggled with positioning with Marie. She never really enjoyed cuddling. She seemed to want it. But we couldn’t really ever get her in a position where she wouldn’t want to wiggle out of it and find another position. So there are all these things that start to sort of start to happening. And then one day, around 11 and a half months, she started hiccuping, again, which was something that she did consistently when she was an infant. And then she started clicking a bottle again. And then all of a sudden, she went from saying 21 words to saying three. And she didn’t pick up new words. And she started walking. She walked multiple steps multiple times for a couple of days, and then just stopped. And then her crawling went from a standard four point crawl to a weird kind of bear crawl. And all these things individually. I was like, oh, that’s kind of interesting. And I’d make note of them. And then one day, I thought, oh, oh, no.
Cassandra Thompson 1:12:20
I think I’m missing something again. So, around 12 months around the time she turned one, I was like, I think something’s off. I remember saying to my husband, like, I think something’s wrong. And he said, Well, you know, she’s no, we sort of chalked it up to she’s just changing. And you know, she’s going through a lot right now. And then one day, we were outside, we had grilled up some food. And we discovered that Mari loves corn on the cob, and she has a little corn cob and she’s eating in and I go to pick a piece of corn out of her teeth. And you know she has now she’s like 12 Tea, she’s just a crazy amount of tea. And her front teeth have a gap in them. I went to pick a, you know, piece of corn out of her mouth and I lifted up her lip. And I monitored her lip tie for nine months. I monitored it, I looked out for it to make sure that things were still okay. And they were and here we are at just about a year old just over a year old. And I look and her lip tie is bad. And it’s complex and different cycle. So we went back to the Cairo and we went back to her dentist. And it turned out that her lip tie had regrown. And it also turned out that Mary’s buckle ties on her upper cheeks were now longer and thicker. And it was questioned whether or not they have actually had been causing heart problems. So our pedia pediatrician, excuse me, our pediatric dentist and our pediatric chiropractor, you know, went back and forth and really wanted to have input from each other. Should we address them? Should we not we left them the first time because they didn’t seem to be causing issues. You know, there’s such little data out on them and they, you know, sort of are like well, it could it could be causing some problems. And after again a slew of bodywork sessions. It became very clear that Mari still had restriction. So just last week, we had a second round of releases for Mari where Today, her dentist re released her live tie, which I watched the procedure this time and heartbreaking, the help to hold her down. Oh, my goodness, such a terrible thing.
Jacqueline Kincer 1:15:14
And so tough at that age.
Cassandra Thompson 1:15:17
So tough. And that lip tie regrew with vengeance. It was so sick. And her buckle ties, I did not realize until they went in and like really opened up her cheek, that they were long and they were thick. And something that’s really interesting about that is that they were different lengths and thicknesses on each side of Mary’s mouth. So on her right side, they were very thick and very long. And interestingly enough, Mari, struggled with torticollis. And her head always tilted to the right. And when she was an infant before body work, started, she would always tilt her head to the right. And when we nursed the position, and the breast that she preferred, or would nurse in, made it so that her head was tilted upwards towards the right. Yeah, and right, crazy. Yeah, so that was a struggle, but I have to say that the difference in Mari again, again, it happened within moments after the release. The difference in her is profound. We I took photos of being at the at the appointment. Mary’s feet were always curled and her toes were always curl. I took a photo of her just by chance, I didn’t even realize I was capturing it. But just moments before the release, I took a photo and it captures her her feet in this. Her feet have always been so bunched that I actually never put shoes on her because nothing fits. It’s it there’s just like, they’re just a clump of foot if you will. It’s not they’re not flat. They’re not relaxed. Wow. Yeah. The photo that I took after her release her toes for the first time are straight. And within 20 minutes, she unveiled that she knows to new words, and started using the same words that she hasn’t said for months. Now again, she is saying sounds that I’ve never heard her say she’s always said nah. And now it’s no, she’d never set an O before. She is discovering that she has the capability to screech which like, you know, when my husband has a headache is not a great thing. But we just laugh because we’re like, wow, she she never did that before. So she’s screaming and screeching and she’s lifting her head and looking up at ceilings. Our car has a moonroof. And she I noticed yesterday, we’re in the car and she’s in the backseat, and she’s just watching the sky. And she is for the first time she feels loose. And when I cuddle her, she doesn’t demand to go in a different position. The difference is profound. So we have had double time labor leads to or it was just the upper tongue. Her tongue tie actually healed beautifully. Elder that is still that’s that was fine. Thank goodness because the stretches for the buckle and in the lip were were enough,
Jacqueline Kincer 1:19:10
much easier, especially at that age. Well, my goodness, there is so much that you’ve been through you and Mari and it’s not over yet. So I would highly highly recommend to anyone who’s listened to this episode. If you want to know more, go to Cassandra page on Instagram. And again, I’ll put that in the show notes. It’s the unbound network all one word, and she continues to share some amazing information that I mean, we would have to make it like a five hour episode to get into it. And maybe we bring you back for part two, you know, I don’t know or part three. I might even split this one up into two parts. Because there’s just so much here and it’s such a really detailed Old topic to cover. And there’s so many nuances along the way that you learn and I am so happy that you are very connected and in tune with Marie and I find that’s the case 99% of the time and for you to notice those things about her feet, and the speech and just for looking up at the moonroof. These are those little things that like make this journey all worth it. So I hope that at the end of the day, you do feel like you’ve done the right thing. And it’s been worth it for you and Marie to do.
Cassandra Thompson 1:20:33
Thank you so much. Oh, thank you for having me and letting us share our story.
Jacqueline Kincer 1:20:39
Oh, gosh, how could I not thank you for sharing your story, not just on this podcast, but you know, in these groups, paying it forward, paying it back to the people that helped you early on, and then putting some information out there on social media to help others it’s really, really invaluable. And if Instagram ever deletes your page, I’m gonna like go postal on them. So they better not, there’s no reason for them to but just it’s so good. Like, I don’t know, you should like do one of those things where you can do like the photo books from your Instagram posts of your kid, but you do it with like your educational posts or something. Because I just love it so much. So thank you so much, Cassandra, for everything you’ve shared with us, and I can’t wait to see how this continues to unfold for you and Marie. Thank you. You’re welcome. Did you know that most moms struggled to produce enough breast milk for their babies or wonder if they’re able to provide enough as a mom of two who struggled with my own breastfeeding journey. And this led to become a lactation consultant, who now supports fellow moms and their babies. I created a product for breastfeeding moms who struggle with the frustration of trying at all but still weren’t able to make enough breast milk for their babies. I’ve taken years of research and clinical experience to create a natural, organic herbal blend to holistically support breast milk production to balance your hormones and to restore nutrients back to your body postpartum. This is called the Advanced lactation formula by holistic lactation, and it’s now available on Amazon. If you’d like the link to this product. To learn more, just head to the show notes and check it out. Also, you can visit my website at holistic lactation.com To learn more
Cassandra Thompson is the mother to Mari, a mom advocate, and creator of the Unbound Network. Cassandra is here today to share with us her non-medical perspective of ties as a mom who has experiences a lot of unnecessary obstacles to breastfeeding her child.
Cassandra began sharing her journey with her daughter on Instagram just two months ago, but already she’s putting into words so many of the struggles parents of children with tongue, lip and buccal ties face.
We explore Mari’s issues with ties from birth until her current age of 14 months. And the journey isn’t over yet! Cassandra shares the emotional aspect, the practical challenges, the complexity of finding the right treatment, and so much more. Her story is her own, so it may not be what yours is or will be like.
In this episode, you will hear:
- The most common issues with getting ties diagnosed and treated
- Why bodywork is important
- What to expect when your baby has ties
- Tips for navigating medical gaslighting
- Cassandra’s Instagram account: https://www.instagram.com/theunboundnetwork/