Mom Kari gives us a glimpse into the world of her daughter Sloan who is profoundly deaf-blind and is tough as nails. Sloan has a clinical diagnosis of CHARGE syndrome, a rare disorder affecting various parts of the body.
In this episode, Kari shares what life is like with the dual sensory loss, her birth story, and how her dreams for her daughter have shifted in meaningful ways.
Kari and Sloan’s GoFundMe: https://www.gofundme.com/f/for-kari-and-sloan
Answer August’s question of the month: https://therarelifepodcast.com/
July responses to question of the month: https://therarelifepodcast.com/q-of-the-month/appointment-day-hacks
Sensory swing: https://amzn.to/3kbb7EE
A quick update before we get to Episode 10. I have a message to read from Kari Harbath who I will chat with in this episode: "I'm saddened to say Aaron, Sloan's dad, passed away on June 2. This loss has been devastating for our family. And as you'll hear throughout the episode, Aaron's claim to fame will always be his amazing entry into fatherhood. Sloan is lucky to call him her dad. He was an extremely dedicated and loving father and we all love and miss him dearly." To Kari, Aaron, and Sloane, I'm shattered for your loss and in awe at the fierce love that you have for each other. You can support Kari and Sloan monetarily by donating to their GoFundMe. The link is in the show notes. And now let's continue on to the episode.
Nothing has been very normal around here! But that's cool. It's cool. What is normal, right?
Madeline Cheney 0:04
Hi! You're listening to Episode 10 of The Rare Life. I'm your host Madeline Cheney. And now that we are in August, we have a new question of the month. Thank you so much for everyone who contributed to July's question of the month. To see those answers, head over to the website, therarelifepodcast.com, there will be a link to that in the show notes. This month's question is: what has helped you follow through on advice from your child's therapist and medical team? One more time: what has helped you follow through on advice from your child's therapist and medical team? I love this question. It goes along very well with Kari's special topic episode which comes out next week. So head on over to answer that question. I'd love to hear your input. Today you get to listen in on my conversation with mom Kari. She is mother to Sloan, who just turned one. She has CHARGE syndrome, which is an acronym for the different birth defects that often comes along with that. In this episode, we mostly talk about Sloan's profound deaf-blindness, which is the most life altering birth defect that she has. We also talk about her birth story, and how her dreams for her daughter has shifted in awesome ways. And as a caution, her birth story does contain possible triggers. So proceed with caution. We met at a deafblindness parent conference. It was really great to connect with with her and her husband, and we even found out we have the same PT for our children. So that was really cool. I've been able to follow her on Instagram. And she posts a lot of really great stuff on there about her daughter's journey. And she's super inspiring. If you're interested in giving her a follow, her username is Sloan_strength, which I highly recommend because she's awesome. So, Kari is a lover of Harry Potter and outdoor adventuring. And without further ado, let's get into our conversation.
Kari, I'm so excited to have you on today. Thank you so much for joining.
Thank you I am excited to be here and to talk through everything special needs parenting at least what I know so far. It's only been a year which is crazy to think about but we're here we made it.
Madeline Cheney 2:45
Yes, the learning curve is huge.
Yes, yeah, exactly. I think I just did the probably the tip of the iceberg but at least we're there.
Madeline Cheney 2:55
Oh I don't know, personally for me, I feel like the first year was definitely the hardest and then after that, it's like you kind of are used to it and you're like, you know, you've got your groove.
That's what I hear. Everybody keeps telling me that like, just the first year. And on Sloan's birthday, everybody was like, You made it like! So that was really cool. But yeah.
Madeline Cheney 3:15
No, totally. Cuz it's like you're used to it like you've got it.
Madeline Cheney 3:19
So to start off, tell me about Sloan. Who is she? What is her life like? How much do you love her?
Yeah, okay. We love her like crazy probably to the point that she's like You guys leave me alone. But she is awesome. Wow. I there's so much that goes along with who Sloan is. When we went to the parenting journey. And I think everybody has an expectation whether you're on like a typical journey or not. And the child comes as they come and your expectation changes maybe goes away, but in a good way because they're their own individual and they're amazing and strong and they are their own person. And Sloan is definitely her own person and she just like--we always say she's our meteorite baby, that she just like, hit our life in a big way. And she really did. She, you know, the word we always use to describe Sloan is actually badass. Super strong. She's, like, amazing. In terms of, she's been through more, you know, and I'm sure you feel this way about Kimball, but she's been through more than most adults I know in just probably the first six months of her life. And she obviously came into the world and we didn't know if she would make it the next day. Here she is a year later and she finds so much joy and meaning in life. And I think she's taught us in a lot of ways to find joy and meaning in life that we never really knew before. And never really thought because her sensory experience and who she is is different than us. And so she's taught us new ways to find connection and love. And she's just a great teacher. And she's a great person and smart and strong, and we are blown away by her every day. And we just love her more than we ever thought humanly possible to a point that it's like, Okay, we've got to--like she needs her space sometimes, because I don't know if you've ever heard of the term cute aggression. But we definitely have aggression whenever we're around Sloan, and we just want to pinch her cheeks and her arms and she has the cutest little face. And we have to curb that a little bit, but she's wonderful.
Madeline Cheney 5:40
I love that. That is so awesome. So you mentioned that with her sensory experience that you have learned a lot from her about how to be happy or have joy. I know about Sloan and her sensory experience. Can you explain a little bit about that?
Yeah, for sure. So of all of Sloan's diagnoses, the biggest one and probably the one with the most lifelong impact is that she is deaf-blind. We had some idea going into Sloan's birth because she was at her 20 week ultrasound we knew of her cleft lip and palate and she had club feet. So there was other things we knew the 20 week ultrasound, and sometimes with kids that have a cleft palate or a cleft lip, hearing concerns can go along with that. So whether it's hearing aids or cochlear implants or profoundly deaf, like we knew that could be a thing. Many times there's fluid buildup in their ears and so we were kind of prepped for that. Not as prepped as--I don't think you can ever be prepared, you know until you hear it and find out, but we were kind of ready. But we didn't know about her being blind at all. And we found out in the NICU one day we were sitting there and had no clue We had been given a little bit of notice that something looked a little bit different about her eyes, but they needed the ophthalmologist to double check. And we were sitting by her bedside and the ophthalmologist came up to us and said that he had checked her eyes and that the most she would ever see would be shadows, and then he walked off. And it was something we were totally unprepared for and caught us completely off guard and we left the NICU and had to kind of get ourselves together and come back. And then the next day, I think was the day that we found out that she was profoundly deaf with little to no treatments. So the reason there's little to no treatment for both for blindness and being deaf is because both her cochlear nerves and her optic nerves are severely malformed. So it goes beyond cochlear implants or hearing aids and then same with the optic nerves. There's really not much treatment they go in the way of that that they can do. So we found that out and it was like it I mean, it was just devastating. And, you know, I know I kind of wrote about this on her Instagram page the other day, but we sort of thought it was all over at that point. We didn't know--we weren't exposed to the deafblind community. We didn't know anything. We knew some things about the deaf community, but not the deafblind community. And that to us just seemed like such a double whammy. We couldn't wrap our minds around it. And so we just kind of made it through the NICU, came home and then suddenly, you know, the deaf blind school started coming by we had these wonderful people (shout out Margaret and Sundie). They came by and started to kind of guide us on our journey with Sloan and she--It's really truly amazing to see what she's done in the face of being deaf blind so far and she is so capable, so smart, so aware, especially with her hands, watching her use her hands is amazing. And she also--she's one year old, she can sign eat. So she's already--and she's very aggressive about it. So because you just see her like sitting there signing, eat repeatedly. And we're like, Okay, we'll get to your bottle. She's just amazing at that. And then just, she will take something and before she even, you know, moves it to her face or gets really excited about it, you'll see her furrow her brow, and she'll move it between her hands and spin it around and feel it and make sure. That's kind of, you know, her feeling is like her seeing, and that's her way of really connecting with whatever she has at that moment. she's learned to (me, not so much my long hair. She knows me by my long hair, for sure). But Aaron (dad), she has learned to identify him the minute she is in his arms, she'll grab his beard, and she knows it's him. And there have been times where she'll go for my face and you can tell she's disappointed because she's like, I wanted dad! It's a really cool thing that you know I'm It's still hard. And as a parent, it's something that we didn't ever really think we'd have to face. And something that if we could help her, you know, have more sensory input from the world, we definitely would, because that would help her just in guiding her everyday life. But with all of that said, you know, we've been really amazed at what she's done so far. And I think that's only going to continue as she gets older. She's just, you know, really amazing. And it's been really cool to have her team of experts come through and show us so many different ways to engage with her, and so many ways to help her communicate. And I think, you know, she has a really bright future ahead of her in that regard.
Madeline Cheney 10:39
Yeah, that's amazing. What kind of--what does her communication look like for her future? What kind of options have you talked about with her therapist?
Yeah, so that's a good question, because there are many. She's actually very smart, very aware right now of her surroundings and they have talked about potentially getting to a place where we can use tactile sign with her, which is basically like ASL. Except that many times the signs are maybe modified a little bit or it could be an altogether different sign. It just depends on if it can be sort of modified to fit like within two hands or on the body so that she can feel the full sign. So for eat right now, you know, she taps her chin. And for her being so little, I mean, it's just like a toddler when they have cute speech impediments or something that comes up. She's just touching her chin and we know that's eat. But eventually we hope to get to a place where we can show her different movements with our hands that express different signs. And many times tactile sign, you'll sign into each other's hands. So, if she's speaking to me, I will hold out my hand and she'll sign into that and then I will sign back. It's amazing though. I mean, it can go as far as--we were talking to, I think it was Margaret the other day, and she knows that people that will sign and they will feel--they can be signing into their hands. And then the deafblind individual will feel the tendons on the top of their hand. And they know what they're saying just by touching the tendons on the top of their hand, like on the movement of those muscles. So, I mean, I, you know, who knows where Sloan will end up, but there are lots of options. And so far, she's showing really strong skills in terms of communication. So she's kind of adapting her own signs right now. But eventually, we're hoping to guide her in a way that she understands at least tactile sign, if not more, ASL, maybe so that's kind of where we're at today.
Madeline Cheney 12:44
Yeah, have you guys started learning those signs? Are you kind of waiting?
Yeah, so we've learned a little bit. "Eat" for sure was the big one. Um, we have been signing a few other things. We've been doing things like we do "eat", we do "sleep". So she has a sensory swing, where we take her out and swing her in her sensory swing probably five times a day, just for 10-15 minutes, and it helps keep her--She looks for a lot of stimulus with her body. And so her sensory swing helps keep her kind of regulated throughout the day. So she's not like seeking stimulus and moving her head a lot and trying to, you know, get that stimulus, she's a little bit more comfortable and regulated so that she can do the everyday activities. So we learn how to sign "swing", and we do that something we do frequently, kind of the basics right now just like you would with, you know, verbal like speaking baby, and just saying like, oh, "hi" or "Mom","dad". Um, you know, her regular activities like "jump", "playing", "eat", things like that. So that's kind of where we're at. We have probably six or seven that we're working on right now. And then as she learns those we'll continue to increase, like how many we're learning at a time.
Madeline Cheney 13:55
Okay, yeah. Wow, that's amazing. And I...yeah. That's so much to like, learn a language on top of everything else.
Yes. Oh my gosh. I remember, that was something too initially. And again, it's all you know, it's like that I guess probably like we mentioned earlier that first year, sort of hustle to get through that first year. But that's something that we really attribute to our team of people and helping us kind of guide us like what we need to do, because it was so overwhelming, especially when we we received the diagnosis. And we really didn't know what Sloan was going to be doing a year from then. And so really, we were just trying to get through the big medical challenges. But now it would be so overwhelming to think like, Oh my gosh, I have to learn an entirely new language right now to keep up with Sloan. But luckily thanks to people like Sundie or Margaret or the people that have been guiding us in the deaf-blind sense and that communication, we know, kind of specific words we should be using and when and continue to ramp up. But right now we're really focusing on those key words with Sloan. And so it's really helped kind of guiding us along the way.
Madeline Cheney 15:10
Yeah, that's amazing. And so Sloane, I know that with CHARGE Syndrome, sometimes it affects cognition. But you were saying that that seems like she might be typical... I don't know... the word I think of is cognitively typical.
Yeah, we think so. It's--as you know, it's so hard to tell. I mean, just being like one year old, so far, but so far, we...actually it was really cool. Our OT Allie, she ran us through the list of 12 month old milestones, which for most people is, you know, like a big deal, but not that big of a deal. It's like, Oh, yeah, we expected they would do this, and this and this. But she ran us through the list of 12 month old milestones on Sloan's birthday, actually. And she did that to point out that other than the really obvious things like vision and hearing specific stuff, Like looks at mom, or you know, responds to her name, like stuff like that, Sloans right in line with all of the milestones, which was really cool and is, you know, just goes to show like, Sloan has done some really cool things. But also that makes us think that right now cognitively, she's very capable. She's very capable of keeping up with that. So we're trying to stay ahead of her, but she's just, she's just too good.
Madeline Cheney 16:31
That's so amazing. That's awesome. Yeah, we had a questions too about Kimball's cognition at the beginning because he was really delayed but like, he's also deaf-blind. So it's like (not quite as severely) but it's like, so is that because of his cognition? Or is that because he can't hear us very well? Or you know, I feel like it is a huge--because we also have felt like he like Oh, he's cognitively typical, like after like the first year when you can watch them more. And there is that sense of relief. And not that you wouldn't love them just as much if they had like cognitive issues, but it's like their life will be easier. And like--
No, yeah, we felt that way too. And I think the biggest thing too for us that we feared in the beginning was communication. And so now being at a place where we're like, wow, they're, I mean, I don't know what we thought. But we had not been exposed to any of it. And so now I feel a bit like naive in saying, like, you know, our life was over, but it's just sort of the reality of what we felt. It was such a life altering thing for us and so unexpected. But now, it's amazing to see that she can communicate and even if it's her own form of communication that only we understand in the moment, like that communication is there and she knows when she's with me, and she knows when she's with Aaron, or her aunt Kassie, like she knows who she's with and expresses joy and sadness at the appropriate times, like she's just been, you know, in terms of communication. That's it's been a really strong suit where we were fearing that that would not be and so we've been really amazed.
Madeline Cheney 18:11
Yeah, and like we're-- communication is just gonna be that much harder for her than, like typical children or like us. That is amazing that she has that extra drive because, you know, that sounds like-- I'm just picturing that, like, if I couldn't see at all and I couldn't hear at all. Like, that would be... I don't know, I feel like it'd be scary, but like, I don't know, these kids are amazing, because they don't know any different. And I feel like that's a huge asset to them. I remember when like Kimball was little and I was like, I feel so bad for him. And like, my sister was like, Madds, he doesn't know any different. Like, he's happy because he--This is great for him. Like, he's, life is great. And I don't know, like, I was comparing him to typical babies, but like, yeah, he's just happy with what he has.
Yes, exactly. I love that. And I think that there's a big sort of lesson to be learned from that. And that's something that we are always working on. But something that we learned quickly from Sloan, that was probably one of the first big things of like, Okay, she is amazing and strong and happy. Actually, a good example is when we go to get a shot, and she has had so many experiences of pain now and I think so many things that maybe in some ways a shot is pretty normal to feels pretty normal to her. Like, it shocks her. But then within seconds, she's like, Okay, that was nothing. I mean, I have this picture of her getting a shot. And she's just like, looking at me like I got this mom, like what are you, you know? Just kind of the sense of like, I've got this. And so I--you know, I think we have learned from her and you mentioned that about Kimball like that--At first we felt the same way we were like this is horrible. And then and seeing them in the NICU and just like the cords and eventually the trach and all of these things and a G-tube too, all being added up, and we're like this shouldn't be happening to a two month old baby. And then now you realize it only bettered her quality of life as she came home and she was able to thrive and grow. And she doesn't know any different. And so you know, while we do, I think sometimes it's probably harder. (Even though it sounds selfish), but harder on us than it is them. Because we're the ones that know different not them, you know?
Madeline Cheney 20:24
Yeah. And watching your child suffer is like the worst thing in the whole world.
Yes. Oh my gosh, yes. yeah. And to sort of the extremes, I think like, again, like we didn't plan on it, you know, just like anybody, you don't plan on any of this. And so we you've been thrust into those scenarios where you're like, this looks like something out of a movie, whether it's like an ER visit or the NICU or, you know, the, like critical care unit, whatever it might be. And it's so hard to get through that and watch them, but somehow they just bounce right back. And it's amazing. And they, you know, smile through it and even if they're not smiling, they're just like, getting through it in big ways. And you're just like, wow, I-- we all probably have we need to take a page out of their book for that.
Madeline Cheney 21:15
Yes, yeah, totally. I want to kind of go back to like when you first--that 20 week ultrasound you were talking about when you first found out that Sloan's body was not typical. Like, it wasn't, it wasn't forming how you expected it to or how like, you know, it normally would. What was that like?
Yeah. Yeah, that was a biggie. And, again, that was sort of a turning point like we didn't-- the whole pregnancy for me was pretty rough. So I had really bad like all day sickness up until the 20 week ultrasound, and actually after looking back talking to my OB, looking back on research and different things. They, I guess, when it comes to like genetic anomalies or different things that can cause hormonal changes in your body which can make you sicker. And so that was just an interesting little thing I learned along with--now, but I was super sick. And so many people like my mom and Aaron were like, this is really unusual, you know, and it was really violent and rough. And I had, you know, not to the extent of some people, but it was definitely on the end of like not normal. Man, nothing has been very normal around here. But that's cool. It's cool. What is normal, right? But so we made it to our 20-week ultrasound through that and I remember always saying, Oh, my gosh, morning sickness is going to be the worst pain I have ever had. I should say all-day sickness, I don't know where--all-day sickness is like the worst I ever experienced. And then we hit our 20 week ultrasound we went in my parents had like full cameras we were all set up. And we're all just sitting there and it's like Oh cute--and again being naive in some respects I went in thinking boy or girl? Like boy or girl?
Madeline Cheney 23:16
That's all this is for, right?
Yeah, that's all this is. Everybody knew was a 20 week ultrasound, we all knew what we were going to find out. So of course, my phone was you know, like full of text messages everybody wondering if I knew anything yet. So we get in there. Everything's going pretty normal. And suddenly--the technician was wonderful. She's been doing this for a long time. And she said something to the effect of like, Oh, it looks like Sloan has a cleft lip. I think that was the first thing that came up really. And it was like the energy shifted, but I was trying to be cool. And to stay cool. Like, it's fine. No big deal and it's like okay! And internally of course you think--which is something that I've reflected on and a lot of people say this to you, and this is something I've reflected on like, you know, we don't always know and there's some hardship in that. And there's some, I think, comfort in that, but it was kind of that mentality of, Oh, it's treatable. Okay, you know, I know, wonderful people that have had a cleft lip or cleft palate, and it's treatable and easy, not not easy, but like in the--
Madeline Cheney 23:22
We can fix it.
Yes, we can fix it, like it's something that we can fix. And so initially, I was like, Okay, well, we can do that. And then, and then it was mentioned, Oh, it looks like you know, he might have club feet as well. And so then immediately, we were sort of thrust into we need to get genetic testing done to see if some if it's something syndromic. So, it that day itself was really hard. I, you know, I remember coming out and they actually took my blood pressure after the ultrasound. And my blood pressure already was something I was struggling with a little bit but it skyrocketed, and at that point, that was when I kind of broke down. My like, you know, my OB and the team there, they were wonderful. And we ended up deciding to do a do an amnio mostly to see--Aaron and I are sort of, although we've learned a lot about this throughout this whole experience, but we're sort of answers people so we really with no other reason other than to see if we could plan for what was going to happen. Also, because if we found out it was syndrome, that they would--insurance would cover us to deliver at the U so that Sloan could immediately be sent to primary children's. However, after testing, they came back and said that it just happened to be that we hit for the two most common genetic anomalies in the book. And as time went on, I was--I had multiple Maternal Fetal Medicine ultrasounds after that, and it was like one a week until she was born. And every time I had one, they were like, Oh, she's getting stronger. She's you know, There were a couple of times that people mentioned her chin looked a little recessed. But other than that, you know, it was like, Oh, she's growing. She's amazing. Like, she's gonna be just fine. There are, you know, just physical differences. That's it. And, and then yeah, we couldn't have predicted what sort of happened after that. But I will say that, you know, that 20 week ultrasound and I have read this a lot about other parents and different journeys, but that was the game changer for sure. I think it all started to shift and change. I, you know, one thing that I know is it's different for everybody. I didn't have a lot of anxiety after that. And I don't know if it was because I was getting a lot of reassurance from people like, Oh, it's treatable. No big deal. You know, it'll be hard, but it's not the worst kind of thing. Or if it was that, you know, in some ways, and I know this probably sounds a little woowoo. But I think there was always sort of this instinct of like something felt a little off from the beginning of the pregnancy, and different than I expected, um, and then once we found that out, you know, I just sort of started to settle in the fact of like, well, what's going to happen is going to happen. And we're going to bring Sloan into this world and just hope for the best and that's kind of the route I took, and also, I was just so sick that I don't think I had the mental capacity or like fortitude to do anything.
Madeline Cheney 27:23
Did you stay really sick, like the whole whole pregnancy?
Well, probably until maybe like a week 24-25. Yeah, but it was rough. And then again, toward the end, so that was when things really started to get intense because it was I was put on bed rest the last like two weeks before someone was born. And then two days before she was delivered by emergency c section. Her movement was starting to slow and so she wasn't moving like she was. And you know my doctor was like it's reassuring enough, but if you feel her slow down at all I need you to come right back in and he was wonderful. I left one day and came home and I was--I looked at Aaron and I was like I don't feel Sloan and so we went right back in and he said let's get Sloan out and things aren't looking good. And it immediately just turned into an emergency like everything in that moment was emergency.
Madeline Cheney 28:31
And up until that point, you didn't have any--they weren't preparing you, like all you knew were her cleft lip and palate and her club feet that was it, you had no preparation for like NICU stays or
Madeline Cheney 28:43
Okay, okay, so then you rush into the-- I feel like that probably is another turning point was like emergency C- section and then everything just took off and got crazy.
Yeah. So we so that--so to her movement was slowing down. Her heart rate was dropping. And that was the big reason that--when I came back in, her heart rate was dropping significantly. And they really couldn't get a good read on her heart rate. But all they could tell is it wasn't great. And so they tried an epidural, the epidural didn't work. And then it was like a day in, I want to say about 24 hours later, my doctor came in, and I just I can remember him saying, (and my mom had three c-sections. So I know that sometimes there's like a stigma around C-sections. But for me, I was like, just get around and healthy. Like, I didn't really care about much else at that point). And so my doctor came in and he said to all of us, he's like, Look, Sloan isn't doing well Kari's not doing well. We are going to perform an emergency c section either now or if you need to think about it, we'll be performing an emergency c section in an hour. That's kind of the way he said it. And so he's like, so you decide now or you decided an hour, but I can guarantee there's not going to be enough progress to deliver any other way. But for me, it was very no question. So I said, Yeah, let's do a c-section. And of course, Aaron agreed and my whole family was on board. And so, um, and that was really where it was like the energy again, it was another shift. And suddenly there were like, 10 people in the room and everybody was moving really fast. And I remember both of us kind of remarked on how it seemed really unusual, again, all of a sudden, like, something wasn't right. And maybe there were things that they didn't need to tell us but they weren't telling us about it. Like, I guess reasons why they were moving so quickly. And so within probably 10 or 15 minutes, I was being rolled back to the OR. And they rolled me back, all I can remember-- So then the like the pain medication and the (I'm trying to think of the word) numbing agent, whatever they use. It was not working. So, there was another layer. It was just like one thing after another and emergency on emergency. So they gave me the hard medicine that totally knocked me out just wiped me out. And Aaron, of course is cognizant, and with it through this entire experience. So I was completely wiped out and out came Sloan. And she had you know, she was a gorgeous, wild bloody baby. Babies are cute, but they're always a little bit interesting when they first come out. She was definitely that, but didn't start crying and didn't make a lot of noise. And so my doctor held her up, I can remember him showing her to me and I was like, Oh, yeah, and I can remember him very distinctly leaning over the curtain and heard him saying "big healthy baby". But he kept saying that over and over probably because of the medicine. I was on. So they rushed Sloan--they had a NICU team on standby. And they rushed Slaon back to the NICU team. And Aaron, we had made a pact that whatever happened, Aaron would go with Sloan and that I would be good, you know, and then my parents were waiting back in the room. And so Aaron took off into the room with Sloan. And then you know the way he's described it as he walked in, and they were trying to intubate her, and she's really hard to intubate, and especially right after birth, because Sloan and I were so swollen, they couldn't get the, you know, intubation to work. So they tried for what you know, Aaron said it felt like an eternity but for about three minutes, and it wasn't working and she was not doing well. And he just kind of hung back and watched it all happen and eventually they were successful on like the fourth try. And then he--the nurses were wonderful as they always have been but they had him come over and hold her hand and take pictures and and then they immediately were like you know things don't seem great and we need to life-flight her to Primary Children's Hospital. And so then I, you know, queue emergency round whatever it is. Um, and so I had been rolled back to the room, Aaron came back, told my parents, and then they had actually advised (they had to lifeflight her) and so they advised that he stay or he take the car down, because you know, they said he won't--which was really good advice. It sounds kind of harsh now, but at the time, it's so traumatic, and it's stuff that we're still trying to get over to this day and probably will for a long time, but they advised that he not take the helicopter ride to primary children's because it's such a tight space. And because, you know, if something goes wrong, there's nothing he can do anyway, like, he shouldn't be there to have to witness that. Um, so it was, it was a hard decision to make, but it was good advice. And she made it she, you know, obviously, my dad and Aaron went down that night. And then my mom stayed back with me. I think it took me probably two days and I was out of there.
Madeline Cheney 34:16
That was probably was such a hard two days.
Yeah, it was weird. I mean, you know, for my experience, I was so out of it. I kind of remember they brought her in in the incubator to say goodbye, before they took her off on the flight. But I don't remember much of that, there are pictures but I don't remember, you know, much when it comes to that experience, but it was a lot of Face Time, which is a weird way to experience you know, you're like first child. And then we didn't get to hold her for a while. We got to hold her within probably the first week and a half. And then after that we didn't hold her for three weeks. Because she was so high risk and if something you know if the--Sloan was so hard to intubate that if something changed or slipped, that could be life threatening.
Madeline Cheney 35:07
And so we held her once for about 15 minutes covered in blue lights and there were like seven respiratory techs standing around me. And that was the extent of it for three weeks until we--So yeah, it was an experience.
Madeline Cheney 35:24
What was--so why did she need intubation? What was causing that?
So she--among being deaf-blind, she has a few other things and diagnoses. So she had what's called micrognathia, so that's where your chin is basically small and it was blocking off her airway. In tandem with that she also was really swollen both Sloan and I were super swollen and she had some blockage in her throat of some kind, they were able to kind of clear that out. But yeah, she has micrognathia, she has her cleft lip, cleft palate, a duplicated pituitary gland, clubbed feet, a small corpus callosum. She had a VSD in her heart, but it's pretty much closed up. And then she's deaf-blind. So that's kind of her list of diagnoses.
Madeline Cheney 36:18
Yeah. Okay. So, um, when did the trach come into play?
So that was actually--so they didn't think that they would be able to extubate her. So that day was really cool, because we went in thinking that it was going to be the last time we saw her, quite frankly, when they went into extubate Sloan. And, again, Sloan in her wild, crazy Sloan way--We were waiting on the couch to hear how it went. And we thought either she would not make it or, you know, she would be intubated again for a while until they could figure out what to do next. But they extubated her and she was upstairs extubated, no breathing tube and she was making it. She needed to be on really high-flow oxygen. But eventually they figured out that she just wasn't breathing like they had hoped her--Again, it's the micrognaphia. So her chin was really, really small at birth. And when I look back on pictures, it's crazy to look at because it's grown a lot now. And we get comments all the time that like, oh, her cheeks are so cute. And it's like, Yes, they are cute. But internally, there's always sort of this moment of like, yeah, they're cute because her chin is so tiny. We let people sit in that like, Yes, they are so cute. But for us it's always like, Yeah, but also the reason why the trach exists and like you know. But her chin was so tiny and she just didn't have a ton of, I guess breathing room in her mouth and then she has her cleft palate. So the cleft palate creates more space for oxygen, to you know, kind of lose traction. So ultimately through all of that, and her being on high flow oxygen, they decided that a trach was the best solution to allow her chin to grow. And then if (which now we're at the year mark in about a year), it didn't grow like they had hoped we will actually be doing an orthodontic procedure called distractors, where they put in their kind of like metal brackets in the back of her jaw. And then we twist those metal brackets once every like two--actually, I think it's, it could be almost every other day thing. But we twist those and eventually just kind of like braces or anything else, it'll push her jaw out and put your chin out so that it opens up more room for her to breathe. And we had, so that's that was the cause for the trach to kind of get to that point, allow her to grow, thrive, and then we would revisit a surgery. And it's looking like you know, she's grown a lot. She is doing really well. And it looks like we'll probably still need to do distractors, but not for very long. And it may be fall or hopefully before this next flu season that she actually gets the trach out, which is really exciting.
Madeline Cheney 39:08
Oh, that is so exciting.
Yes. It'll be a whole new life at that point.
Madeline Cheney 39:13
Yeah. Oh, man. That's awesome. Um well, just to wrap up. What do you hope for Sloan in her life? Both that she learns from you and just from life in general, what kind of person do you see her being or hope that she is?
Yeah, that's a good one. That'll probably make me tear up. I almost made it.
Madeline Cheney 39:40
Oh, it's good. That's just the reality of our life. I think. Um, you know, I think that is one of the biggest lessons this whole thing has taught me because, oh, here we go. Okay. I'm good. I'm good. Before Sloan's birth, if you would have asked me that, I would have said something to the effect of like, Oh, you know, great dancer. Like that's a silly example. But like great dancer, super smart, you know, headed to Harvard, like big aspirations, that we probably all have and wish for our children. But this has been a really grounding experience in that Sloan or any future child or family member that you know, we might have in our life. Now, really all I wish, the biggest thing for me is kindness. I think, like, just being a kind-hearted person, whatever that looks like, for you, you know, differences if you have a disability, if whatever it might be, just that there's a level of kindness there. So I hope Sloan, you know, I hope we can instill in her just kind hearted ways and had--Younshin! You know Younshin.
Madeline Cheney 40:01
Oh yeah, we love her.
Yeah, the best. But Younshin has said so many times, which I'm sure she said about Kimball because she said she says it to everybody. But she has said Sloan is going to do what Sloan's gonna do, which sounds so simple. And that, you know, basically someone's going to be her own person and everybody's their own person, but it's true. And so I think our goal is to allow and to help Sloan continue to thrive and develop like Sloan is going to thrive and develop, and love her and help her feel loved and connected, and teach her you know, kindness and love back along the way. And I think they sound like really basic tenets of life and really sort of cheesy things. But at the end of the day, I think through this whole experience, I've learned, like, you know, being on the drill team in high school is cool, or you know, like, going to some major, you know, university is amazing, but at the end of the day, what I really hope for is that she feels loved, and that knows how to love and be kind, whatever that looks like for her. So that's kinda where it sits, at least today.
Madeline Cheney 42:04
I love that. That's amazing. Thank you so much, Kari, you're amazing and I just loved hearing more about Sloan and your life with her.
Thank you. This has been wonderful. I just feel so honored!
Madeline Cheney 42:19
As usual, you can find photos of Sloan and her family on the website therarelifepodcast.com. Just look for Episode 10 where you can also find a link to the sensory swing Kari talked about. Next week, I'll be talking to Kari again about her special topic which is embracing your child's medical and therapy tribe. It's a fabulous conversation and I highly recommend it. Please share this podcast with anyone you know that could benefit from it. Let's spread the love.