Episode 79: Cleft Babies & Breastfeeding
Jacqueline Kincer 0:15
For this episode of breastfeeding talk milk motherhood mindset begins, I just wanted to take a moment to give you a bit of a content or trigger warning. In this episode we’re discussing NICU babies and medically fragile babies. And there are some traumatic experiences described. So if you’re a mom or if you work with moms who have gone through some similar traumas of medically fragile babies, this episode might not be for you. So now’s your opportunity to tune in to another episode of breastfeeding talk and skip over this one. If you’re all ears, and you want to hear this incredible, strong mom’s journey of breastfeeding with having two cleft babies, it’s an inspiring story, one of triumph, one of healing one of heartache, and I’m so excited to share it with you.
Welcome back to the breastfeeding talk podcast. I’m your host, Jacqueline Kincer. And today I have an exciting guest, Alisa Messick. She is a cleft mom times two. And she is going to be sharing her journey of having two children with cleft. And so I’m really hoping that this episode will be great for any mamas out there who might be going through the same thing or expecting a cleft baby. Because this is definitely a unique challenge. And a lot of people are wondering how they can combine that journey with breastfeeding. So welcome, Alyssa.
Alyssa Messick 2:18
Thank you so much for having me. I’m really excited to be here and just share I have two different journeys, two completely separate journeys with feeding. And I’m really excited to share that with you.
Jacqueline Kincer 2:30
Yes. Oh, I’m so excited to hear about it. So I’d love to start at the beginning, which is, you know, probably your pregnancy. Right. And, you know, how did things unfold? Did you find out during pregnancy? Is this something that ran in your family that you might have been aware of? So I’d love to hear about that.
Alyssa Messick 2:50
Yes, so we actually did not have any history of a cleft in our family at all, my husband or I and we were at our 20-week ultrasound for our first son. And then with our second son, we found out at 16 weeks. So we had been pretty heavily followed by maternal-fetal medicine after our first diagnosis from 20 weeks on whenever I had him. And then for my second pregnancy right away, we got in with maternal-fetal medicine just because of the history with my first son. And we got a second Cliff diagnosis. Hmm,
Jacqueline Kincer 3:23
yeah. Well, that’s, that’s great that you were able to find out then, but I’m sure that you had some feelings come up once you did hear that news. What was that like for you?
Alyssa Messick 3:33
Definitely. So the first diagnosis completely shocked us, right. But the second diagnosis was just, I’m gonna say it was just as hard. We knew that there was this possibility of that happening, again, slight possibility. But at the same time, it was just like we had all of this PTSD because of the history that we had with our first son. And we had a lot of hospital admissions. We were in the hospital for a really long time after our first son was born because of feeding and because of failure to thrive. And he actually has a condition called growth hormone deficiency that we didn’t know about, which affects his blood sugar’s. So we had a lot of baggage from our first son’s birth. And just, it was hard after hearing that news a second time thinking, or we’re going to have to go through all that again. And but there was some kind of peace also, that we didn’t know what was coming. And we didn’t know how to handle things a little bit more than we did the first time. So it was very mixed, like mixed emotions the second time.
Jacqueline Kincer 4:49
Yeah, that makes sense. And so how old are your kids today?
Alyssa Messick 4:54
They’re two and four. They’re thriving. And so we did go through a lot at the beginning. But this is a journey, right? Like it starts whenever they’re born, and then it will go through their entire childhood and for the rest of their lives, essentially. But they’re thriving, and they’re doing great. I mean, they are just like any other two and four-year-old that you could imagine. So, two boys, they’re very crazy, Jack.
Jacqueline Kincer 5:21
Oh, I love that. Yeah, well, let’s, let’s talk about your oldest son. So you found out at 20 weeks during the anatomy scan? And what type of cleft does he have? Or did he have
Alyssa Messick 5:35
Jack was born with a bilateral cleft lip and palate, his cleft was pretty severe. So bilateral just means that it was on both sides of his lip, and then his whole palate, which is the roof of your mouth was involved. Definitely makes a difference with suction and feeding. You can’t get any suction from a palate being open. So that was very challenging. And then with our second son, he was born with a unilateral cleft lip. His palate was intact. So obviously two very separate different feeding journeys.
Jacqueline Kincer 6:10
Yeah, definitely. So when Jack Welch, I guess I’m curious, because the listener might be curious to knowing what was going on with Jack, did that change your birth plans at all, or where you might deliver in terms of hospitals and things like that, for a second son, or either of them? Like, was that was there a change in the birth plans just because of knowing that there was a cleft coming?
Alyssa Messick 6:34
Our hospital actually has a really great system, we were very blessed by that we had just moved. And I think that it was just all aligning very perfectly. And we had a great team at my doctor’s office. And then they partnered with the cleft team that we work with now for both of our boys. So after they returned, they just I mean, they didn’t have to go into the NICU. That was our situation and how our hospital handled things. But I know every hospital is different to
Jacqueline Kincer 7:07
Yeah, oh, that’s really great. Yeah, sometimes I’ll hear from parents, you know, if there’s something specific going on with the baby, but they’ll find out, Oh, I really can’t deliver this hospital because they don’t have the right team there. So you never know that sounds really like you, you were at least prepared with that. And you had a great team that was going to be ready for you. So you know, normally, you know, for a lot of moms, they kind of plan on hey, you know, right after birth, I’m going to choose skin to skin and get the baby to the breast but knowing that there wasn’t going to be that ability for Jack to create suction and whatnot. What were your plans? Or how did that unfold right after the birth in terms of getting him his first feeding and all of that
Alyssa Messick 7:49
I had a very traumatic birth with Jack, I had a 72nd, Shoulder Dystocia. And that was very traumatic old, essentially, his head came out and his shoulders were stuck for 70 seconds. And the nurses had to push on my stomach to get him out. And I mean, I had to push also. So when he came out, he went straight to the warmers. And I didn’t hear him crying. I didn’t know what was going on. And that was very traumatic, like, the plan was actually for him to come to me right away for skin to skin, because I knew that I wasn’t going to have that bonding experience of getting him to nurse and the nurses were fantastic. They told me ahead of time that they would do their best to make sure that we had the best experience possible. Like even if it was just putting him to the breast and allowing him to just like try, we knew he wouldn’t get suction. But even if it was just for that connection, they were really great about that. But they got him all situated and fixed up. It felt like forever till he actually got to me, but then we did do skin to skin. And that’s a lot of what we did try to do at the beginning when he in his newborn phase because I couldn’t breastfeed and I felt pretty robbed.
Jacqueline Kincer 9:07
Yeah, yeah, absolutely. So was it then in your plan to try to pump for him? And what did that look like?
Alyssa Messick 9:15
Yes, I did play on pumping, and I did pump. As soon as he was born, I did meet with a lactation consultant, and she hooked me up with the pump and you know, got me familiar with everything. And that pump was attached to me all the time. I felt like I really, really was trying my best and I did pump for him exclusively for one month. But then things started unraveling, spiraling and unraveling and… I get very shaken up when I’m talking about this. So it’s just a time that was packed with so much emotion because even now looking back at that time There was so much more going on than even just trying to exclusively pump for him. He was failure to thrive. So I felt like I was trying to do my best for him. And I felt like I was failing him once again, as a cleft mom, you know, you get this diagnosis, and you’re like, What did I do to fail my child? And then you think, okay, like you gameplan. And you think to yourself, I’m gonna get it together. That’s what you say to yourself, I’m gonna get it together, and then they come. And then you realize how daunting pumping can be. Because it’s like, pump, wash the parts feed them, when do you sleep, like they need to be fed every two to three hours. So it’s just over and over and over and over again. And then you throw in all of these other things like failure to thrive and hospital admissions. And you feel completely overwhelmed. And at least that’s the place that I was at. A lot of rock star moms out there are like pumping exclusively for a really long time. And every buddy just does their best. So if you’re listening to this, and you’re thinking like, Alyssa, I’m with you, I understand where you are, or I made it a day into the pumping journey. And I feel like I failed. Or if you pumped for 13 months, you know, whatever you did was enough. And your mental health in that process is so important, too. And that’s the point that I got to when I was a month into pumping, I was completely spiraling, like my mental health was just down the tubes. And he also had severe reflux, and I was cutting off the things and doing everything I thought I possibly could. And it still wasn’t enough. And so that was really hard on my mental health. So finally, at him being a month old, I stopped pumping. But then he actually went to the hospital the next month, and he had to get a G Tube placed. And he was on TPN. So that was a total game changer once all of that kicked in. And we had to go to the hospital again.
Jacqueline Kincer 12:07
Oh, wow. And so when was it in that first month that you found out? Or was he already failure to thrive in the first month,
Alyssa Messick 12:15
he was his first month, like Wilczek, the doctor said that he was getting to be a little bit underweight and not really gaining the way that they had hoped. But at the same time, like he was still a cleft effected baby, and that can be normal for cleft affected babies. And she said, let’s, you know, see how this goes a little bit longer. We got admitted for something else that was unrelated to the feeding. But then once we got to the hospital, the hospital was like freaking out like oh my gosh, like he is failure to thrive, like, what are we going to do? And that sort of sent me spinning too, because I was just like, oh my gosh, I I just I’m just not doing enough. I was so hard on myself at that point, like as a brand new mom. And I just felt like every corner I turned I wasn’t doing enough.
Jacqueline Kincer 13:08
Maybe that’s so hard and so scary to be in that environment. And having these medical professionals tell you that everything you’re doing is not enough, because that was obviously not your intention. So yeah, you’re over here, just completely killing yourself to try to feed this child. And that’s devastating. Absolutely. So were you able to start off just being able to bottle feed him initially? And that’s how he was getting milk. Okay. And did you have to use a special bottle being that he was cleft? Or did he have an appliance or anything like that? I’m just curious how that worked.
Alyssa Messick 13:45
No appliances, but we did use the Dr. Brown specialty bottles, they were amazing. They were awesome with the little blue discs, and he didn’t do well on them. But with his reflux, he was thrashing around on the bottle. He was throwing up entire bottles. And that was within that first month where I was just like, is this normal? Like is this? I don’t know. Is him screaming? 100% of the time is this normal?
Jacqueline Kincer 14:13
Oh, gosh. Yeah. And did you have support outside of medical professionals for having a cleft effected child or was that not something you’d been connected to yet?
Alyssa Messick 14:24
Our cleft clinic had a social worker and so I felt connected to her at first and then my family and my friends are very supportive. I’m blessed with that luxury. However, any of those people like none of them understood exactly what I was going through. I felt like they were trying to say the right things. They were trying to do the right things, but I still felt like I was drowning. And it was really hard because I didn’t ever feel like super connected to somebody who really understood what I was going through.
Jacqueline Kincer 15:00
Hmm, yeah, that makes sense. So now in the second month is when he got readmitted to the hospital. Is that correct?
Alyssa Messick 15:10
Yes. So he got re admitted. He was born in February. He got readmitted in March. We were like, in and out of the hospital week after like a weekend, a week home a weekend a week home. And he had an NG tube when we came home. So we were then tube feeding. And then it got pulled out and we got readmitted because his weight still just was not up to par. And then he actually started having diarrhea like profusely and was losing weight even more. So we went to the hospital that day, and we didn’t come home for it was the end of March, we came home at the beginning of June.
Jacqueline Kincer 15:52
Wow. So that’s terrifying, because now you’re like, we’ve done the tube, we’re doing all the right things. Did you find out the cause of the diarrhea with him?
Alyssa Messick 16:01
It was a lot of trial and error. So he was on he was on PPIs. And then so for us also, this is just my experience.
Jacqueline Kincer 16:11
And for the listener, can you describe what those are? Yes.
Alyssa Messick 16:15
So those are like acid reflux medications. And since he was struggling so much like I said, he had been spitting up full bottles, like three ounces at a time. And then after he was doing that, then they put him on the sorry, I want to say PPIs, they would put him on the reflux meds. Yeah, I call mom here. They put him on those reflux medications. And then we came home for another week. And then it actually stopped the spitting up. But then what happened was he started having this diarrhea, and it was just so scary, because the rate that he was losing weight, like he already was not. He already was failure to thrive. And then whenever that started happening, it was just like he was losing weight. Like it was like a snowball like that would just couldn’t get under control. And no matter how much we tried to feed him at the hospital, under our doctor’s care under nurses care, and just there was nothing that was working. And so about two weeks into that hospital stay. I woke up in the middle of the night, one night, and I was like, What happened to him? He was skin and bones. And I was first of all outraged because I thought were like, Has everyone been like has has I was sleeping for a little bit of time. You know, when you’re a medical mom and you’re in the hospital, you do not get much sleep. But for some reason I was getting some sleep at that time bedside. And I just thought like has no one come and check on him in these like last four hours that I’ve been sleeping because he was like skin and bones and they came in they couldn’t even get IVs and him they couldn’t even like it was just very, very traumatic. Finally they got one on his head. And that thing saved his life. I swear. They prepped him for emergency surgery. And actually, he had such a traumatic road. So they were going to try to do a PICC line couldn’t get the PICC line. Then they decided that they were going to do a central line. And they tried to do that I attempted to do that while he was awake. Just sedated. He had a pneumothorax which is a punctured lung. And you can imagine at this point, like I’m just already spiraling my kid is like looking like he has not been taken care of in weeks. And here we are, we are at a really good hospital and just nobody had answers for what was going on. And so I felt very out of control not only for my child just in my life in general. And they had he had the pneumothorax. after that. I was like, Well what are we going to do and so they had to prep him for surgery, but they had to wait till the next morning to do surgery. And there was this angel of a nurse that saved his life to this day. I still believe this. He had one IV left and the NICU nurse came in. And she said you have to run this ivy league. So basically he needed hydration and he needed just to sustain him. So she said you have to run this at like seven miles an hour. And if you’re in the mat if you’re a medical mom, you know what I’m talking about right now. And they had to run this IV at such a slow drip because his vein would have blown if they ran it too fast. And that was basically what was keeping him hanging on. So he made it through to the next Morning, he went in for a central line surgery, which is something that they put into one of your like, oh my gosh, I’m gonna kind of lose you here, but it’s right on like your collarbone area. And it goes into a vein that basically provides nutrients through. It’s like an intravenous nutrient system. And it’s for long term. So like that we knew that he was going to be on this long term. And our cleft surgeon was there. And he was a blessing to because he said, if he’s going to be in surgery for this, let’s have him get a G Tube placed while he’s under. So he did, he got a G Tube placed and came out of surgery, the TPN. He was on that for like two months. And they trialed the G Tube a couple times, but at a very low and slow, right. And he still would just have these GI issues that nobody could figure out. So at that point, we did get transferred to a nationally recognized Children’s Hospital. And yeah, we that.
Jacqueline Kincer 21:08
Wow. Yeah. Oh, my gosh, was that in a different state?
Alyssa Messick 21:13
It were us a couple of hours away from our house.
Jacqueline Kincer 21:15
Okay. Wow, oh, my goodness, you I owe like, my heart is aching for everything that you had to go through in those moments of just seeing your child. So unwell and feeling totally helpless. That’s, that’s where trauma kicks in, is when you cannot change the situation, and you so desperately know what needs to be changed, right? Like, you just do not have that option of of changing your circumstances. And this is your little boy, oh, my goodness, wow.
Alyssa Messick 21:50
My first baby. And so we got to that children’s hospitals, he had a cardiac arrest within the first hour of being admitted to the hospital. So he was off the TPN for a little while, and his blood sugar dropped, they never had an explanation for the cardiac arrest. And that was very debilitating to because I mean, like you said, like, you just, you’re grasping for straws. And whenever you’re in the right place, you feel like you shouldn’t be getting the answers. But sometimes that patients looking back now I can say this was four years ago, looking back, I can say that is truly what built endurance and like changed me. And just going through those moments where I was like, there is nothing I can do in my life to control this right now. And I just, it took a lot more than going through that. You know, I had to do a lot of work on myself. But sometimes your hands are just tied and you feel like there’s nothing you can do.
Jacqueline Kincer 22:53
Yeah, yeah, absolutely. And I’m curious, while this is all happening, were you needing or planning on going back to work after having him? Or was it an option for you to just stay home? Like, how is that affecting you in that part of your life? Well,
Alyssa Messick 23:10
I planned on going back like three months after I had him, but that just didn’t happen. Thankfully, support of the community that we have around us. People were helping us and doing like incredible things for us like fundraisers, and really just, we’re so thankful for that, because I was able to continue to be there for our son. So
Jacqueline Kincer 23:36
yeah, yeah. Oh, my goodness, I Yeah. As I was a mom and that, like just mom instinct, like, nobody can pull me away from my child, if that’s going on, right. I mean, it just, you know, it’s easy to say, but you couldn’t have done it without the support. It sounds like so that’s, that’s amazing. So he’s in the hospital for so long. And, you know, I guess how does he leave the hospital? How do you make that transition to bring him back home with you.
Alyssa Messick 24:05
So he had been on TPN. And this doctor came in one day, and she said, we’re going to start trialing his G Tube. And I was like, There’s no way in heck, you’re gonna start trialing his G Tube, I had all this PTSD. And I was like, this is just not going to end well, from everything we had been through up until this point. My anxiety just could not think about putting a milliliter of formula in that G Tube. And so we did, we started and I mean, she had to like pep talk me and she told me like, we are going to go so slow, literally so slow. And they did and at this point, he had been off all of the reflux medications at this point. Because I advocated for that. I was like, well, first of all, if he’s not even going to be having anything, and truly, why would we be keeping him on these reflux medications? So off of those, and it started going well, and we came out of the hospital with him on a 24 hour G tube. So he was 100% of the time hooked up to his G Tube pump. And we were just so thrilled to be home. And so happy that even though we had to bring this with us, and it was going to be a new kind of challenge that we were just able to be home with him and that he was thriving, and that he was taking this food. I mean, it was just such a blessing. So we came home in June. And he just, I mean, started, he started thriving, and we started working with specialists in our area. And like in our state, we have early intervention. So we were plugged into early intervention, we had an amazing, amazing dietician who helped us and each step of the way, I mean, he was hooked up to a G Tube for 24 hours a day for months and months. But then we broke it down to like, condense the feeds as we upped things. And each time we upped that pump like the milliliters per hour on that pump, I would hold my breath and say a prayer because it was just like, is this going to be the moment where something goes wrong again? And thankfully not?
Jacqueline Kincer 26:16
Wow, that’s, yeah, you’re hyper vigilant at that point, obviously. And in some ways, I mean, you should be right, because you want to be keeping a close eye on your child and make sure that he’s okay. So there’s a place for that. But where we get stuck is when our brains don’t let that go. Right. So that’s amazing. You know, I think, you know, a lot of medical moms know that there are these resources out there that communities have. And when he really when things are really bad. There are, there is a safety net, you know, we are very lucky in the US. Most states have really great programs for that. So I’m so glad that you were able to utilize those resources.
Alyssa Messick 26:59
Yeah, and I just love to say to to the mom, who’s listening to this, who is pregnant with our cleft child, that was our story. That is not every story. I’m about to tell you our second child story. And I think that when you listen to something like what I just expressed and told you, it can be super scary. But also through that whole process. There is hope. Because as if you’re advocating for your child, which you will innately do once your child is born, you start advocating, and you start trusting the process. Like even when it’s hard even when that doctor was coming in and telling me like this is the next step. And I just wanted to bang my hands on the wall and scream and say like, no, like, we can’t do that, because I was so just had so much PTSD, like, it will be okay, you will get through this. And if any story could give you hope. I hope that it’s Jack’s story.
Jacqueline Kincer 27:57
Ah, yeah. I love that. I love that. And yeah, that’s a good reminder that every story is different. And you’ve got two very different ones, of course, and you know, hopefully things do work out. I think the biggest part that I see play a role is that advocacy for your child. Because while obviously the doctors and nurses care if they’re not caring for only your child, where as you are right, and you’re able to be with them for, you know, as many moments as possible, you’re not just coming to check on them every four hours, right? So you’re this keen observer, and you really do know your child best. And that’s, that’s the best gift that you could give your child in these situations. Definitely. So yeah. Do you want to tell the second story?
Alyssa Messick 28:43
Yeah, so after we got home with Jack, obviously, my husband and I had a lot of talking about and considering to deal with, are we going to even have any more kids after that, like, we always knew that we wanted to have more than one we knew that we wanted to give Jack a sibling but it was very traumatizing. So we talked about it and we’re like, okay, like, I think that we’re ready like even though Jack was still on the G tube and we were still working on things with his feeding things. Were looking on the up and up and we thought okay, like we will start trying again. And I got pregnant when Jack was about 15 months old. And I thought I’m going to do the best that I possibly can for myself and for my baby this time and I’m going to do everything I know that would not make something like this happen again. So I did my best and what I thought was my best and at 16 weeks we got a second Cliff diagnosis for our second son.
Jacqueline Kincer 29:45
Yeah. Did you feel like that you had not done enough or the right things when that got handed down?
Alyssa Messick 29:53
I definitely felt like wow. Again, like I I thought that I was doing enough. And what is it like that I’ve done that. I had a lot of guilt. And I also did have a sense of peace that like everything would be okay. Like I said before, I didn’t know anything different than having a cleft affected child. So there was a piece of me that was reassured that this baby would now have jack and jack would have this baby to be able to relate to. And so that gave me peace. But there was definitely still a lot of emotions that, you know, I had felt that made me feel like I was to blame.
Jacqueline Kincer 30:39
Hmm, yeah. And throughout this time, did you ever seek out like a therapist or anything to help support your mental health? Or was there just a lot of internal work on your part, or, you know, with your husband, I’m curious how you navigated all of that, I would say,
Alyssa Messick 30:57
I did a lot of internal work. My faith definitely was there for me too. And I leaned on that as support, I did go to some counseling. And then my husband and I, we both had different ways of processing things. So we talked and we work things out together. But then we also, your spouse doesn’t always process things the same way, you know, and even though you’re going through the same thing, and there’s nobody else in the world who can understand you like your spouse, you’re also two separate people. So remember that you’re like on the same team, but at the same time, you are your own individual person. I did a lot of work on myself throughout that period. But then I definitely felt like I was just like, knocked right out of, you know, my shoes for the second diagnosis, because I felt all that guilt again.
Jacqueline Kincer 31:47
Yeah, that’s really hard. And it can sometimes be hard when, like you said, you’re you’re not seeing your reaction reflected in your spouse. And it can be confusing sometimes. And all of that. So yeah, by the time that you were giving birth to your second it was Jack still on a G Tube or no, like, I’m just curious how he was doing in the background, is he
Alyssa Messick 32:11
was on bolus feeds at that point, which means that he was getting we used a syringe at that point. So he was able to eat with his G Tube more like with mere meals. So in the morning, we would give him a feed through his G tube in the middle of the day, we would give him a feed and in the evening, and then overnight, his pump would run. And he was we were also working on like oral feeding at that point. And I will never forget, we left him with a sitter one time. And I was like, if he eats this one black bean, I will be happy it will be a win if he just eats this one black bean because we just need him to start eating orally. And this is what it’s going to take is just one little step at a time. So he’s come a long way.
Jacqueline Kincer 32:56
Wow. Yeah, that’s huge. And did he have cleft surgery in this time period as well?
Alyssa Messick 33:03
He did. He had his first lip repair at seven months. And then at 12 months, he had his palate repair.
Jacqueline Kincer 33:09
Okay. Wow. Yeah. Oh, my gosh, he’s been through so much. What a little warrior kid, huh? Oh, my gosh, yeah. Yeah. So let’s hear about the little brother then how did that go?
Alyssa Messick 33:23
Jet was born two years after Jack was born there exactly two years apart. And up until his birth, we knew that he had a unilateral cleft. But we didn’t know if his palate was involved if it was not involved. So talking about that internal work, I definitely struggled and talking about like my faith, like I definitely struggle in my faith throughout my pregnancy at that second pregnancy and wrestled with a lot and like, so we went in to have him and he was delivered C section because of my traumatic birth the first time. And when they pulled him out and held him up over the curtain. This is one of my favorite stories to tell. They held him up. And I could just see, by the way his gums were that it didn’t look like his palate was affected. And I looked at my husband and I was like, Oh my gosh, like it doesn’t look like it’s how it’s affected. They took him over to the warmers, the nurses were like, it’s there was something here about a cleft palate. And we don’t see a cleft palate. And obviously, I’m still on the table and my husband’s over there with the baby. And he said, Do you hear that he has a strong sock. And that was one of the happiest, happiest moments of my life because I so much possibility was opened up to me at that point, like breastfeeding became an option. And knowing that the feeding struggles that we had been through, it was just like this. Oh, my Yeah, after all of that, it was just like this release of worry.
Jacqueline Kincer 34:50
Wow. Yeah, I can imagine I can imagine where you’re like, Oh, this is amazing.
Alyssa Messick 34:56
This is so much better. Yes, for sure.
Jacqueline Kincer 35:00
Yeah, wow. Well, that’s that’s amazing news to get right after the birth. And I love that you got to see that first glimpse for yourself as well, that’s special. So I
Alyssa Messick 35:11
breast I breast fed J. I mean, he within 10 minutes of him, you know, getting to me after the C section, I was able to start nursing him. And that was one of the most special things ever, because a couple of weeks after he was born was when the pandemic was declared,
Jacqueline Kincer 35:28
Oh, wow. Oh, my goodness, because you hadn’t been through enough in the last two years. So we need to throw up get Sonic in there. I didn’t even think about that timing. But yeah, man, that’s the worst. But you got to nurse him. That’s so amazing. What was what was that like, because you didn’t get to really do that before at all.
Alyssa Messick 35:50
It was really special. And it did really make me feel like, okay, I can do this for my baby. And at that point, I had worked through a lot of emotions that like, I knew I did my best for my like for my baby, and for myself whenever I gave up pumping out a month. But this was also kind of like the chance to just be like, Wow, I’m actually able to do this. And I’m succeeding at something that I had always dreamed of. I mean, I really wanted to nurse the first time before we found out about Jack’s cleft. And like I had said, I felt like I was robbed. And that’s something that was a grieving process. Also, you’re grieving the process of knowing that your child’s going to look different as soon as they’re born. But then you’re also grieving this process of like, something that you thought would be a part of you, and be able to bond you and your baby. And so being able to nurse jet was just like this. Yes, I finally feel like I’m able to do something that I’ve always wanted to do with my baby.
Jacqueline Kincer 36:54
Wow, that’s really cool. So did you guys go home? And all was great, or? Yeah, I’d love to hear how things continued.
Alyssa Messick 37:05
We did we were able to come home. And I just basically nurse around the clock there at the beginning, the cluster feedings all of the things that come with a, you know, typical, I mean, this is, this is all about breastfeeding and lactation support. So I truly was blessed with the nursing experience that I had with him.
Jacqueline Kincer 37:27
That’s so awesome. Did you have to do anything special because of the cleft lip? No,
Alyssa Messick 37:33
his his he has a slight gum notch. But other than that he was able, Oh, he did have this kind of just, I forget about this because of everything else that we had been through, but like, he did have some lip and tongue ties that they did get whenever we are in the hospital.
Jacqueline Kincer 37:49
Okay, so they corrected them there? Yes. Oh, man, you’re lucky mom. That’s awesome. You know, and it’s, it’s a lot to throw into the mix when you’re already talking about a cleft. But I’ve discussed this with colleagues a lot of times and we have not seen cleft babies that don’t also have ties. And of course, some cleft lips are to the point where they’re, you know, there just is no friend Ulam because that’s where the cleft is. But we do see that really commonly. And so that’s something for parents to be aware of is there might be more to the feeding challenges, like you might be like, what’s only a cleft lip? Why is breastfeeding, so affected? Let’s maybe see if there’s a tongue tie or a lip tie. And it’s not that we want to say there’s just yet another anatomical problem with your child, but do look into it. And if you’re as lucky as Alyssa, they’ll pick it out in the hospital and treated there. But not everyone is so lucky. And fortunately,
Alyssa Messick 38:46
I had some experience.
Jacqueline Kincer 38:49
Yes, you are armed with all of the knowledge, I guess. Yeah. Yeah. Wow. So that’s, that’s really cool that you got to experience that breastfeeding. And, of course, it’s exhausting. And you’ve got now Jack in the background, who’s a toddler and all of that. So how did breastfeeding go after that newborn stage?
Alyssa Messick 39:10
It was good. I struggled. He struggled a little bit with the reflux also. But I was just absolutely not on the acid reflux medications. I was like no way. We’re not going that route again. Personally, it was a personal decision. I did cut things out of my diet. And he didn’t seem to respond to that better. He had like a bloody stool phase, where we just held on for dear life and pushed our way through it and just kept doing what we were doing. I was like, I am not giving up on this. I am not because I clung to that too. I think during a time that was so isolating. I had that I had that bonding experience with someone who was there you know, shut off from the rest of the world and for my family and friends who had been the support, you know, just in my life before but everything was cut off. And then that kind of led me to the support that I now create for Kluft moms because I was so shut off to the world. And then I started finding other Kluft moms on Instagram and meeting other moms and feeling finally, for the first time completely understood. Hmm,
Jacqueline Kincer 40:18
yeah. Isn’t that interesting how the pandemic shifted that way that we’re going to connect with people. But through that you were able to find this new community and cultivate one. So? Yeah, I’d love to hear more about, you know, you’re obviously sharing your story on the podcast, which is an incredible support to so many moms. But how did that unfold for you to where you’re supporting moms now and creating that community? And what does that look like?
Alyssa Messick 40:48
Yeah, I connect with other Kluft moms, and basically use my space on Instagram as a place for them to come and know that any of the feelings and emotions that they’re going through, are valid. And it doesn’t matter what anybody else says about your feelings, like you are the only one who knows what it’s like to go through that. And every Cliff journey, I say this all the time, like to moms that I’m connecting with, like every Cliff journey is totally different. Obviously, I just showed you that between my own two kids. But I think at the same time, we all still experience those similar emotions. And that’s where we can really connect and feeling those emotions. And sitting in those emotions is okay. But then the other side of what I try to help moms with is like the rebound. Like it’s okay to sit in those emotions and know that they’re valid, but then like, what are we going to do about it, like, we’ve got to move on from that, to be able to support our kids, and to be able to go through this journey with our heads up high.
Jacqueline Kincer 41:47
So important, there’s, you know, like you said, you’ve gone through so much trauma, and then that created PTSD for you. But here, you are able to talk about your journey. And of course, it’s still emotional, but it’s not triggering you and sending you into a spiral like it might have in the past. And there’s kind of two paths forward, right? People who get stuck in the trauma, and you know, sort of are in this loop that just doesn’t go away. And then there’s others who can, you know, transform that and come out of it. And it’s really, really needed. And I love that you’re addressing something that truly, you know, if it’s if it’s a NICU mama, right, they always kind of say, they have to connect with other NICU moms because other people don’t get it. And so, you know, you kind of use the term medical mom, right? That’s another one. You know, I’ve definitely had clients who, you know, Down Syndrome babies, or, you know, heart defect babies, right? There’s a lot of commonalities between what you’ve gone through and what they’ve gone through. And even though I’ve supported people in those situations, I don’t know what it’s like, you know, and I usually try to say, hey, you’ve got to connect with other moms who have been through it, because I know things from a professional standpoint, and I can counsel you and I can do all of that. But that’s not the same as me, knowing what you’re really feeling and understanding what that’s like. Because it’s terrifying. It’s scary. I’ve been through trauma, but not that kind of trauma. So, you know, I think we all have and I love that you’re giving moms a place to talk about it to feel heard and seen. Sometimes it’s just that is enough. Like, honestly, it’s I will have it linked up in the show notes. But everyone has to check out Alyssa on Instagram, because I think your content is so relatable to the moms that you resonate with. And just even if you never comment on something, but you see it and you’re like, oh, yeah, feeling that, you know, like that is just everything to know that you’re not alone.
Alyssa Messick 43:48
Right. And that’s what really started things for me. I thought, if I can just help one person not feel as alone as I felt, then that’s all worth it to me.
Jacqueline Kincer 43:58
Hmm, that’s amazing. So did you end up winning jet? And how what did that look like? How did the breastfeeding journey unfold? Or maybe you’re still nursing him? I don’t know. We didn’t talk about it ahead of time.
Alyssa Messick 44:12
We actually we wrapped up around 13 months and he was just like, a hungry little man like he was just all the foods. So it was just kind of like that I had all of the experience with calories and foods food groups I should be giving him because of Jack because of weaning him off the G Tube he is now completely weaned off the G Tube. He only eats orally and his G Tube is completely out but for jet like he just he was so ready to eat and it was obvious like that transition was like okay to start so yeah, pretty seamless. Thankfully, I I cannot complain.
Jacqueline Kincer 44:53
Oh, that’s amazing. That’s so awesome. So now there are two and four and what are They like,
Alyssa Messick 45:00
Oh my gosh. wild and crazy is that like, that’s accepted I, they are the best little brothers. They are awesome. They just light up our lives every day, they say the most funny things and lots of fighting between each other, but at the same time, that’s to be expected. But right now the thing on our journey, that is the biggest deal is Jack is going through a lot of speech therapy jet jet is going through speech therapy, too. But Jack definitely has had challenges with speech. And so for the last couple of years, we’ve been seeing seeing speech therapy, he goes two times a week, and that is currently our biggest challenge. All right,
Jacqueline Kincer 45:46
well, you know what, you’re tackling this so early. And that’s obviously going to be a huge help. And he’s not quite school age yet. So that’s, that’s amazing. I love that. Yeah. Oh, gosh. Well, I’m glad that you got to have, you know, I don’t want to minimize it. But you know, an easier relatively speaking journey. I’m sure that was a relief for your second to not go through all of the crazy unknowns and challenges like you had with Jack had to be such a relief. I’m sure you were on high alert, most of the time, but at least you did have that? Definitely. Yeah. Oh gosh, well, for moms listening, who might be expecting a cleft baby, or have a cleft baby themselves? Like, what would you say? Was, you know, maybe it’s one thing, maybe it’s three things like your biggest source of strength through it all? Like, how do you think you really came out the other side, being as Okay, as you are
Alyssa Messick 46:46
being honest with myself throughout the process, during the time that I was pumping, and it was really hard to be honest with myself that I needed to stop pumping for my own mental health, because I felt like I was doing something good for my baby. And I felt guilty for giving it up. But then at the end of the day, I had to be honest with myself and say, like, but I can’t serve my baby the best way possible, for my own mental health if I don’t. And then throughout the process of my second pregnancy, being honest with myself on how I was feeling and just allowing myself to like go through the roller coaster. And then when the pandemic hit, and I was struggling, we had a really seamless feeding experience. But mentally I was going through it. And so just allowing myself again to experience those emotions and ride the roller coaster and tap into my faith. And then I did, I did get like my own health diagnosis is and just once again, being honest to myself, and going back to the drawing board of like, How can I be there for myself? And how can I like I get through this, because obviously, I’ve gotten through a lot, I can get through this too. So letting yourself experience everything that you feel.
Jacqueline Kincer 48:06
That’s so powerful. And I would love for people like go rewind, like a minute and listen to it again. Because I think that’s something I see a lot of people avoid doing. They do not allow themselves to confront what’s really going on for them. And when you’re so focused externally, you think you can put yourself on the back burner, but it will ultimately catch up to you. So just deal with it now. And I promise it seems scary. But it’s going to make things a lot easier in the long run. And if you can hear Ulisses stories and the way that you’re telling them Alyssa just I can tell you’ve done so much healing and made so much peace with things and you love your two little boys so much.
Alyssa Messick 48:50
Yeah, I do for sure. And I’m thankful for the journey at this point. I’ve grown to be thankful for it because of the healing that I’ve been able to do.
Jacqueline Kincer 48:59
Hmm, that’s incredible. And you know, would you say there were any big lessons for you along the way through everything that you’ve been through so far,
Alyssa Messick 49:07
you can go through a lot more than you think that you can go through and come out the other side and look back and be proud of yourself. And you will like as long as you just keep going, you know, there’s some of there were times where there was no other option but to keep going. But once you get through the other side of that and you look back and you’re like wow, like I really am strong and it’s very empowering. And it’s very, that in of itself to be able to tap into those emotions are like really healing because you just realize how much you can truly do as a mom and like when it comes to your kids how much you can be there for them. So
Jacqueline Kincer 49:47
ah, that’s incredible. Well, I’m so happy for you. And jack and jack just sound like the biggest blessings in your life. So thank you for sharing your story with them and your story. Have you and everything you’ve been through, you’re inspiring. You’re incredible. And if anyone wants to connect with Alisa got her Instagram linked up, that’s the best place to start. She’s got some amazing content there for you. And if and if you’re not a clubs parent, and you’ve decided to lift listen to this whole story, like she’s just an inspiring little ray of sunshine with everything she posts and just I feel like, if you’re having a bad day, you just go and watch one of Alissa’s cute little reels or read her captions, and you’ll just feel better. So thank you, Alyssa.
Alyssa Messick 50:33
Yes, thank you so much for having me.
In today’s episode, Jacqueline is joined by Alyssa Messick. A mom of two on her journey of integrating cleft with breastfeeding. Alyssa shares her story about trying to feed her newborn babies while being a new mom and trying to keep her mental health stable.
This is a great episode for any mama with a cleft baby, or expecting a cleft baby. This is definitely a unique challenge and a lot of women wonder how they can combine that journey with breastfeeding. This is also an amazing story of perseverance, and one determined mama.
In today’s show, we discuss:
- Types of clefts that Alyssa’s children were diagnosed with
- How Alyssa mentally dealt with the diagnoses
- Both of Alyssa’s birth stories and beyond
- Pumping for her first child
- Breastfeeding her second child
- How Alyssa supports women today
A Glance at This Episode:
- [1:16] Alyssa shares how she found out her children were cleft and how she dealt with the diagnosis
- [4:23] Types of clefts that Alyssa’s kids were diagnosed with
- [5:15] Alyssa’s birth plan with her 2nd son after knowing the diagnosis, and during the first month of feeding
- [12:29] Alyssa talks about her support system
- [14:03] Alyssa’s son is readmitted to the hospital for the second time
- [21:56] How Alyssa balances work amongst the hospital stays and surgeries
- [23:50] Transitioning from the hospital back home
- [27:27] Alyssa shares her second experience with her next baby also being diagnosed with cleft
- [34:34[ Alyssa’s breastfeeding journey with her second
- [38:04] Breastfeeding after the newborn stage
- [39:30] How Alyssa is supporting other cleft moms
- [43:02] How Alyssa weaned her son and when
- ? If you are truly struggling with breastmilk production, check out our Advanced Lactation Formula supplement or consider booking a Low Milk Supply Consultation or Pumping Consultation with us
- ? Looking for more trusted knowledge and a deep dive on how to know what’s what with breastfeeding and how to overcome problems? Check out our support community The Nurture Collective®