Cleft Babies & Breastfeeding

[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

 

00:00:15 Jacqueline Kincer

 

Before 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 are 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 moms journey of breastfeeding with having two cleft babies. It's an inspiring story, one of triumph, one of healing 1 of heartache. And I'm so excited to share it with you.

 

00:01:07 Jacqueline Kincer

 

Hi, I'm Jacqueline Kinser and for the past five years I've been helping families all around the globe to overcome their breastfeeding challenges and this is the first non clinical breastfeeding podcast that shows you the walk, breastfeeding and master motherhood. Through practical tips, mindset shifts and honest conversation to create a confident and empowering breastfeeding journey. This is the Breastfeeding talk podcast.

 

00:01:41 Jacqueline Kincer

 

Welcome back to the Breastfeeding Talk podcast. I'm your host Jacqueline Kinser and today I have an exciting guest, Alyssa Messick. She is a cleft mom Times 2 and she's going to be sharing her journey of having two children with clefts. 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.

 

00:02:19 Alyssa Messick

 

Thank you so much for having me. I'm really excited to be here and just share. I have two different Journeys, 2 completely separate journeys with feeding and I'm really excited to share that.

 

00:02:29 Jacqueline Kincer

 

With you? 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. Their pregnancy right. And how did things unfold? Did you find out during pregnancy? Is this something that ran into your family that you might have been aware of? So I'd love to hear about that.

 

00:02:50 Alyssa Messick

 

Yeah. So we actually did not have any history of cleft in our family at all. My husband or I, and we were at our twenty 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 cleft diagnosis.

 

00:03:23 Jacqueline Kincer

 

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?

 

00:03:33 Alyssa Messick

 

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 sugars. 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 are we going to have to go through all that again and But there was some kind of peace also that we did know what was coming, and we did 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.

 

00:04:48 Jacqueline Kincer

 

Time. Yeah, that that makes sense. And so how old are your kids too?

 

00:04:53 Alyssa Messick

 

A. They're two and four. They are 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 Here Are just like any other two and four year old that you could imagine SO2 boys. They're very crazy, Jack and Jack.

 

00:05:22 Jacqueline Kincer

 

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?

 

00:05:35 Alyssa Messick

 

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 palette, which is the roof of your mouth, was involved. Definitely makes the difference with suction and feeding. You can't get any suction from a pallet 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 2 very separate different feeding journeys.

 

00:06:10 Jacqueline Kincer

 

Yeah, definitely. So when well I, I guess I'm curious because the listener might be curious too, 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?

 

00:06:26 Alyssa Messick

 

For a second.

 

00:06:26 Jacqueline Kincer

 

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.

 

00:06:35 Alyssa Messick

 

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 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 too.

 

00:07:07 Jacqueline Kincer

 

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. 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 gonna do skin to skin and get the baby to the breast. But knowing that there wasn't gonna be that ability for Jack to create section 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.

 

00:07:48 Alyssa Messick

 

That I had a very traumatic birth with Jack. I had a 72nd shoulder dystocia and that was very traumatic school. 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 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 suctioned, but even if it was just for that connection, they were really great about that. But they got him all. Situated and fixed up and 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. Meaning when he in his newborn phase because I couldn't breastfeed and I felt pretty robbed.

 

00:09:07 Jacqueline Kincer

 

Yeah, yeah, absolutely. So was it then in your plan to try to pump for him. And and what did that look like?

 

00:09:16 Alyssa Messick

 

Yes, I did plan on pumping and I did pump. As soon as he was born, I did meet with the lactation consultant and she hooked me up with the pump and, you know, got 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 on like spiraling and unraveling. And he 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 fill my child? And then you think, OK. Like game plan and you think to yourself, I'm gonna get it together. That's what you say to yourself. I'm going to 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 Rockstar moms out there are, like, pumping exclusively for a really long time and everybody 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 were 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 all of the things and I was doing everything I thought I possibly could and it still wasn't enough. And so that was really hard. 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 G2 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.

 

00:12:06 Jacqueline Kincer

 

The hospital again. Ohh 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?

 

00:12:15 Alyssa Messick

 

He was his first month. Like well, check 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 affected 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 gonna 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 baby.

 

00:13:09 Jacqueline Kincer

 

That's so hard and so scary to be. In that environment and and having these medical professionals tell you that everything you're doing is not enough, because that was obviously not your intention. So 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? OK. 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.

 

00:13:44 Alyssa Messick

 

Worked no appliances, but we did use the Doctor Brown specialty bottles. They were amazing. They were awesome with the little blue discs. And he did 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?

 

00:14:13 Jacqueline Kincer

 

Oh gosh. And did you have support outside of medical professionals for having a cleft affected child? Or was that not something you'd been connected to yet?

 

00:14:25 Alyssa Messick

 

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.

 

00:15:02 Jacqueline Kincer

 

Yeah, that that makes sense. So now in the second month is when he got readmitted to the hospital, is that correct?

 

00:15:10 Alyssa Messick

 

Yes. So he got readmitted. He was born in February, he got readmitted in March. We were like, in and out of the hospital week after, like a week in a week home, a week in 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.

 

00:15:52 Jacqueline Kincer

 

June. Wow. So that's terrifying because now. You're like we've. Done. The tube. We're doing all the right thing. Did you find out the cause of the diarrhea with him?

 

00:16:01 Alyssa Messick

 

It was a lot of trial and error, so he was on. He was on PPI's and Lansoprazole. So this is just my experience and I'm.

 

00:16:11 Jacqueline Kincer

 

And for for the listener, can you describe what those are?

 

00:16:15 Alyssa Messick

 

Yes. 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 3 oz at a time. And then after he was doing that, then they put him on the sorry, I want to say PPI's. They would put him on the reflux meds. Yeah, like old 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 our 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 where, like, has everyone been like has. As 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 last four hours that I've been sleeping because. He was like skin and bones and they came in. They couldn't even get IV's in 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 Rd. so they were going to try to do a pick line, couldn't get the pick line. Then they decided that they were going to do a central line and they tried to do that, attempted to do that while he was away. Week just sedated he had anemia thorax 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 taking 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 gonna 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. IV like so, basically he needed hydration and he needed just to sustain him, so she said you have to run this at like 7 miles an hour and if you're in the 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? 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 going to 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 an intravenous nutrient system and it's for long term. So like they, we knew that he was going to be on this long term and our cleft surgeon was there and he was a blessing too, because he said if he's going to be in surgery for this let's have him get a G2 place while he's under. So he did. He got a G2 placed and came out of surgery. The TPN. He was on that for like 2 months and they trialed the G tube a couple times, but at a very low and slow rate 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, with that.

 

00:21:08 Jacqueline Kincer

 

Wow. Yeah. Oh my gosh. Was that in a different state Right.

 

00:21:13 Alyssa Messick

 

It was. It was a couple of hours away.

 

00:21:13 Jacqueline Kincer

 

Or From our house. OK. Wow. Oh, my goodness. You I ohh 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 is when you cannot change the situation and you so desperately know it 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.

 

00:21:49 Alyssa Messick

 

Now my first baby and so we got to that Children's Hospital. 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 too, 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 should be getting the answers, but sometimes that patience. 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.

 

00:22:53 Jacqueline Kincer

 

Yeah, yeah, absolutely. And I'm curious, while this is all happening, were you meeting 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?

 

00:23:10 Alyssa Messick

 

Well, I planned on going back like 3 months after I had him, but that just didn't happen. Thankfully for of the community that we have around us.

 

00:23:18 Jacqueline Kincer

 

Yeah.

 

00:23:22 Alyssa Messick

 

People were helping us and doing like incredible things for us, like fundraisers and really just we're so thankful for that cause I was able to continue to be there for our son so.

 

00:23:36 Jacqueline Kincer

 

Yeah, yeah. Oh, my goodness. I. Yeah. As as 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?

 

00:24:04 Alyssa Messick

 

You. 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 is 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 entirely? Why would we be keeping him on these reflux medication? 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 interventions. So we were plugged into early intervention. We had an amazing, amazing dietitian 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 gonna be the moment? Where? Something goes wrong again. And thankfully not.

 

00:26:16 Jacqueline Kincer

 

Wow, that's yeah. You're hyper vigilant at that point, obviously. And in some ways, I mean you, you should be right because you want to be keeping a close eye on your child and make sure that he's OK. So there's a a place for that, but where we get stuck is when our brains don't let. That go right. 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 you really when things are really bad, there are there's 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.

 

00:27:00 Alyssa Messick

 

Yeah. And I'd just love to say, too, to the mom who's listening to this, who is pregnant with their cleft. Filed. That was our story. That is not every story I am about to tell you. Our second child's 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's 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 OK you will get through this. And if any story could give you hope, I hope that it's Jack's story.

 

00:27:58 Jacqueline Kincer

 

Ohh yeah, I love that. I love that. And yeah, that's a good reminder that every story is different and you've got 2 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 well obviously the. Doctors and nurses care. They're not caring for only your child, whereas 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.

 

00:28:39 Alyssa Messick

 

Definitely. So yeah. Do you want to go tell the second story? 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? Anymore kids after that? Like we always knew that we wanted to have more than one. We knew that we wanted to give Jack his sibling, but it was very. Traumatizing. So we talked about it and we're like, OK, 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, OK, 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 gonna 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 cloth diagnosis for our second son.

 

00:29:45 Jacqueline Kincer

 

Yeah. Did you feel like that you had not done enough or the right things when that got handed down?

 

00:29:53 Alyssa Messick

 

I definitely felt like. Wow again, like 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 OK 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. To have this baby to be able to relate to and so that gave. The piece, but there was definitely still a lot of emotions that, you know, I had felt that made me feel like I was to blame.

 

00:30:39 Jacqueline Kincer

 

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 I did a lot of internal work. My faith definitely was there for me, too.

 

00:31:01 Alyssa Messick

 

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 worked 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.

 

00:31:47 Jacqueline Kincer

 

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, was Jack still on a G tube or? No. Like, I'm just curious how he was doing in the background.

 

00:32:11 Alyssa Messick

 

He 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 YouTube. 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 the 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.

 

00:32:56 Jacqueline Kincer

 

Long way. Wow. Yeah, that's huge. And did he have cleft surgery in this time period as well?

 

00:33:03 Alyssa Messick

 

He did. He had his first lip repair at seven months and then at 12 months he had his pallet repair.

 

00:33:10 Jacqueline Kincer

 

OK, wow. Yeah. Oh my gosh. He's been through so much. What a little warrior kid, huh?

 

00:33:16 Alyssa Messick

 

My gosh, yeah.

 

00:33:17 Jacqueline Kincer

 

Yeah. So let's hear about the little brother then. How did that go?

 

00:33:23 Alyssa Messick

 

Jet was born two years after Jack was born there exactly 2 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 struggled 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 his palettes 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 suck 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. My yeah, after all of that, it was just like this release of worry.

 

00:34:51 Jacqueline Kincer

 

Wow. Yeah, I can imagine. I can imagine where you're like. This is amazing. This is so much.

 

00:34:57 Alyssa Messick

 

Better. Yes, for sure.

 

00:35:00 Jacqueline Kincer

 

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.

 

00:35:10 Alyssa Messick

 

So I breast. I breastfed Jay, 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 weeks after he was born was when. The pandemic was declared.

 

00:35:28 Jacqueline Kincer

 

Oh, wow. Oh my goodness, because you hadn't been through enough in the last two years. So we need to throw a pandemic in there. I didn't even think about that timing, but yeah. Oh, 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?

 

00:35:50 Alyssa Messick

 

It was really special and it did really make me feel like, OK, 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 myself, like for my baby and for myself. Whenever I gave up. Pumping at 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, a something that you thought would be a part of you and be able to bond you and. Your baby and so.

 

00:36:46 Jacqueline Kincer

 

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. 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.

 

00:37:05 Alyssa Messick

 

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 all About. Breastfeeding and lactation support, so I truly was blessed with the nursing experience that I had With.

 

00:37:27 Jacqueline Kincer

 

Him. That's so awesome. Did you have to do anything special because of the cleft lip?

 

00:37:32 Alyssa Messick

 

No, his his. He has a slate gum notch, but other than that he was able. Ohh 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 were in the.

 

00:37:48 Jacqueline Kincer

 

Hospital. OK, so they corrected. On there. Oh, man. You're a 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 frenulum 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, it'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 treat it there. But not everyone is so lucky, unfortunately.

 

00:38:46 Alyssa Messick

 

I had some experience.

 

00:38:49 Jacqueline Kincer

 

Yes, you were armed with all of the knowledge, I guess.

 

00:38:52 Alyssa Messick

 

Yeah.

 

00:38:53 Jacqueline Kincer

 

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?

 

00:39:10 Alyssa Messick

 

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. It was a personal decision. I did cut things out of my diet and he did seem to respond to that better he had like. A bloody stool fit. Days 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, I was shut off. From the rest of the world and. My family and friends, who had been the support, you know, just in my life before but. That everything was cut off and then that kind of led me to the support that I now create for cleft moms because I was so shut off to the world. And then I started finding other cleft moms on Instagram and meeting other moms and feeling finally, for the first time, completely understood.

 

00:40:17 Jacqueline Kincer

 

Hmm. 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 1. 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?

 

00:40:48 Alyssa Messick

 

Yeah, I connect with other cleft 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 cleft. Bernie, I say this all the time. Like to moms that I'm connecting with, like every Clef 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 OK. But then the other side of what I try to help moms with is like the rebound. Like, it's OK to sit in those emotions and. Know that they're valid. But then, like, what are we gonna do about it? Like we've gotta move on from that to be able to support our kids and to be able to go. Through this journey.

 

00:41:46 Jacqueline Kincer

 

With our heads up high. Hmm. 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, 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 nick. You Mama, right. They always kind of say they have to connect with other Nicky 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 I usually try to say, hey, you've got to connect with other moms who have been through it because. I know things from 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, 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 we'll have it linked up in the show notes, but everyone has to check out Alyssa's 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.

 

00:43:48 Alyssa Messick

 

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.

 

00:43:59 Jacqueline Kincer

 

Hmm, that's amazing. So did you end up weaning Jack 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.

 

00:44:11 Alyssa Messick

 

Ahead of time, we actually we wrapped up around 13 months and he was just like. Hungry little man like he was just wanted all the food, so it was just kind of like that. I had all of the experience with calories and foods that 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. And his G tube is completely out, but for jet like he just he was so ready to eat and it was obvious that that transition was like, OK to start. So yeah, it pretty seamless. Thankfully I I cannot complain.

 

00:44:53 Jacqueline Kincer

 

Oh, that's amazing. That's so awesome. So now they're two and four. And what are they like?

 

00:45:02 Alyssa Messick

 

Ohh my gosh. Wild and crazy is that like and 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. That 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.

 

00:45:46 Jacqueline Kincer

 

All right. 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. I don't wanna minimize it, but, you know, an easier, relatively speaking journey with Jeff, 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.

 

00:46:22 Alyssa Messick

 

Definitely.

 

00:46:23 Jacqueline Kincer

 

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 OK as you are.

 

00:46:47 Alyssa Messick

 

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 I needed to stop pumping for my own mental health because I felt like I was doing something good for my baby and I 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 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.

 

00:48:06 Jacqueline Kincer

 

That's so powerful and 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 Alyssa's stories and in the way that you're telling them Melissa 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.

 

00:48:50 Alyssa Messick

 

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. What to do?

 

00:49:00 Jacqueline Kincer

 

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.

 

00:49:07 Alyssa Messick

 

Far 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. 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.

 

00:49:47 Jacqueline Kincer

 

Ah, that's incredible. Well, I'm. 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 of you and everything you've been through, you're inspiring your incredible. And if anyone wants to connect with Alyssa. Got her Instagram linked up. That's the best place to start. She's got some amazing content there for you, and even if you're not a cleft parent and you've decided to listen to this whole story. Like she's just an inspiring little ray of sunshine with everything she posts and just I I feel like if you're having a bad day you just go and watch one of Alyssa's cute little reels. Or read her captions and you'll just feel better. So thank you, Alyssa.

 

00:50:33 Alyssa Messick

 

Yes, thank you so much for having me.

 

00:50:40 Jacqueline Kincer

 

Did you know? Most moms stop breastfeeding in the first month post. Hardham, I believe succeeding at breastfeeding means having the right mindset. In fact, studies show that the number one factor that determines breastfeeding success is commitment, which is why I've created my incredible audio download of breastfeeding affirmations. Where I give you actionable mantras so you can breastfeed your baby with confidence and Peace of Mind and best of all, it's free to get access to this audio and PDF. Simply visit holisticlactation.com/mantras and you can get started right now.

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