123 - Bravery Knows No Size - Meet Adelyn

Say hello to Adelyn!

Adelyn is a feisty, joyful, and tenacious three-year-old from Dawsonville, Georgia where she lives with her parents, Cat and Jeff, and big sis, Autumn. Adelyn loves snuggles, light-up toys, music, and a good ‘ol tickle fest!

Shortly after birth, Adelyn was diagnosed with Trisomy 18, a rare disorder in which babies are born with 3 copies of chromosome 18 instead of 2.

Throughout the month of September, we’ll be shouting love for Adelyn to help raise awareness for her rare medical journey with Trisomy 18 while also raising funds for the cost of a screened in back porch so Adelyn can enjoy being outside despite her extreme sensitivity to light.

Episode Transcript

(00:00):
Okay, So Autumn is spunky spunky, how else would you describe autom automn
is a creative Yeah, definitely creative. She has good she's compassionate, innovative
skills. Yes, she definitely hascompression. She makes sure that nobody feels

(00:23):
left out. I think she makessure other people feel welcome in the class
that may not feel as welcome.Are good traits. An Autumn is eleven,
right, yes, okay, aboutto be twelve? Okay? And
when is about? When? Nottill March? Fifth March. We were
rounding a little bit there, that'scounts. That's fine. Yeah, So

(00:45):
Autumn is big sister, yes,and let's introduce baby sister who's not a
baby? Uh. Tell us alittle bit about Adeline, a little girl
that is determined to defy the odds, a story that never gets old with
the conversations we have, and thisone will leave an impression on you.
My name is Seth Carnella and thisis the Go Shout Love Podcasts. Adeline

(01:11):
is our feature Kido of the monthand is diagnosed with trisomy eighteen. And
today we are talking with Adeline's parents, Kat and Jeff, who will share
with us an in depth look intoAdeline's personality as well as her medical journey
with trisomy eighteen. Now, oneof the words they used to describe her
is feisty, and you will hearabout how her feisty tone helped her into

(01:34):
this world and how it has kepther going. Truly with Adeline, bravery
knows no size. You will alsohear about her sister, Autumn and how
incredible that relationship adds to their familydynamic. Leading this conversation is Josh Veitch,
our executive director of Go Shout Love, and you will also hear a
little bit from Page Mueller, oursocial media coordinator and a very talented photographer.

(01:57):
Please take a second to rate,review and share this podcast with your
friends, families, and communities.It truly does make a difference. Yes,
Adeline is three and a half andshe is feisty, tenacious, joyful,

(02:24):
Oh dear, yeah, those arethe some of those three words that
we would describe her as being.Yeah, full of joy, full of
life. Doesn't like she could havejust spit up, and then like a
second later she's smiling and laughing,like I don't understand how somebody can go
through so much and be so muchand so full of joy. Yeah,

(02:47):
yes, she always has. Shealways captivates people when they come talk to
her or try to say something toher. You know, they'll try to
hold her hand and she'll look overat them, you know, and so
they always she always makes sure thatshe does a good job with her eyes

(03:07):
tracking, you know. So peoplewill come over to her and and she'll
look at them and it's like,well, she can't say anything, you
know, but she says, youknow, her own kind of personality comes
out with it. But yes,and she's she's an extrovert. She thrives

(03:29):
around people. Her personality has beencoming out even more since she's been home
from the hospital. She is onehundred percent love to be around people.
If she was at home sitting hereby herself, she would just be like
bored. And most times she justwe'll kind of go to sleep because there's
nobody to hang out with. Yes, So does she get her extrovertedness from

(03:53):
mom? Definitely? Mom? Yeah, Yes, I remember that, yes
me. Yeah. Okay, Sowe've introduced the kids. Now we're going
to switch it up and kat Iwould like for you to introduce your husband.
Tell us a little bit about him. What he's like what he enjoys,
and then Jeff, you're gonna dothe same street. Okay, Well

(04:15):
this is Jeff. He is myhusband. We've been married for over thirteen
years. He grew up in asmall town of South Carolina called ninety six,
which is actually the name of thetown. And so he went to
a small he was he went toa small church. It was kind of
small, wasn't it. And heended up in college. He ended up

(04:41):
going to a college called North GreenvilleUniversity, which is actually a private Christian
university, and he decided to gothere because the logo was like where Christ
makes the difference, and that's whathe felt like. And they had a
soccer team, and they had asoccer team, so he got He played
soccer his whole growing up years,and then he played soccer in college.

(05:02):
So he ended up getting his degreein youth and Family ministry and then went
to seminary and got his masters inYouth and Family ministry. So his passion,
his passion is definitely youth. Hedefinitely loves to teach. He loves
to when he's not teaching because heis an introvert. He has to be

(05:26):
a professional extrovert at work because that'shis job, like he has to be,
like he works with people, hehas to minister to people all the
time. So he is a professionalextrovert. But when he gets home,
he needs downtime because he's worn out, he gets tired. Of course,
he's fatigued, and so he lovesto play board games and he loves to

(05:46):
build work with his hands. That'skind of like his downtime. Like if
he had that time, he saidmaybe, and he always jokes around and
he said, well maybe in twentytwenty seven, I'll get to that board
game. But just because we're busy, sure, so, but he does
like doing that kind of stuff.He loves conversation and he loves talking to

(06:08):
people about you know, anything,and he loves like people that don't necessarily
have the same view as him.He loves to having conversation. He's not
he's not going to argue. Hejust loves to talk to people because too
many people try to argue, liketheir opinions, and he's like, I'm
not about that. So it's justreally neat to hear him talk. And
and even when he gets to preachor teach up on up at church,

(06:31):
and he's just really a fun afun person to be around and just very
compassionate and very welcoming. Awesome,Jeff, you have a lot to live
up there. She just gave afull wikipedia. It sounded I don't know
if it's actuate or not, becauseI'm just meeting you, but it sounded
it sounded answer. I know Idid that on purpose. I kind of

(06:53):
throw you off a little bit.Okay, So now Jeff, it's your
turn. So you introduce us toyour bride. Well, this is Catherine,
and I call her Cat. Shegoes by cat. Teenagers tried to
We met working with students together,and the teenagers tried to match make us

(07:16):
because they wanted her to be Catleopard, you know. And so I
was like, no, it waskind of funny because the first time we
met, this is the fun story. I was heading out to play middle
school football and I was in controlof like making sure they don't kill each
other. And it was about thirtyfive middle school boys that would just like

(07:40):
play football, and so I hadthe football in my hand. I was
leaving the office and she come upand she was like, Hey, isn't
your name like Jeff Cougar and Isaid, no, it's leopard, and
then I just kept walking. Thatwas when we first Like that was the
initial face to face conversation. I'mtelling you. You know, I was

(08:01):
like because I was like not lookingforward to going out because I had to
like calm down fights, you know, every Wednesday night because they just loved
playing, and so I was alreadyenvisioning that. So I was not in
the mood. And then then wegot to work together at the retreat that
weekend, and then we became friendsand we such So yeah, So Catherine,

(08:26):
she grew up in Conyer's, Georgia, which is outside of Atlanta.
She considers it Atlanta, and shegrew up there. She has an older
brother and a younger sister, sowe're both middle children and which has a
lot of dynamics and so she Myfavorite thing about her first job, she

(08:48):
sold gatorade on Stone Mountain. Likeit's like a fun like a tourist place.
They hike up a mountain and shesold gatorade at the top and like
that was like an hilarious thing whenI first matter. But she worked there
and then she served, she worked, went to college and played volleyball Valdosa

(09:13):
State and down to South Georgia,and then was had the opportunity to go
with the International Mission Board and wasa journeyman over in China. She worked
two years with people group over therewho were kind of in the mountains of
the Himalayas, and the her andher partner they would hike up the mountain

(09:37):
and identify people and GPS it backto the office in Atlanta and say,
there's a village up here. Wegotta bring Jesus, you know. Like
so they had a good that wasreally cool. And then she went to
Seminary after that and paid her waythrough seminary working it out back as a
waitress, which is amazing to dealwith a lot of people like that.

(10:01):
And so we became closer friends.They're at seminary and got married in twenty
ten, and the adventure continues,is what I we continue to say,
and I would say, now,what's awesome about Cat is her fitness.

(10:26):
She's very patent passionate about being afitness instructor and she goes five days a
week, five times a week.She teaches at a YMCA and has a
good following of people that come,and she likes to hang out with them
afterwards, being a good extrovert,and she enjoys conversation with them, and

(10:50):
she has a very good heart forI would say, like other cultures,
like she has a lot of likeIndian foe in her classes and such,
and so some of the fun thingswe like to do together is eat at
restaurants like Thai food, you know, like we like we like having you
know, let's go try this place, you know. And so I would

(11:13):
say some attributes about her is sheis she's an encourager. So she likes
to encourage other people. And thisreally came out more and more as I've
got to know her and such.And then like four years ago, we
didn't know that the tries me eighteenworld existed at all. We had like

(11:37):
never heard of it. And thensince we've been in this, I've seen
her like message people and a friendof a friend of a friend of a
friend, my daughters having you know, trist me eighteen baby. We don't
know what to do, and sothey're like, oh, we know someone,
and so like you know, throughthe avenue cats able to text them
and say, okay, here's dothis. And when you go to the

(11:58):
doctor asked this question student. SoI've seen her be able to encourage like
other families who've going through a similara similar situation, and so can't is
very I would use the word bubbly. That's a word. Uh, what's

(12:18):
Yeah, that's definitely a weird thinks. Yeah, yeah, she has,
she has, you know, she'sbubbly is like a I don't know,
like a fun you know, afun upbeat. Yeah, likes to joke
in a while. Yeah yeah,and uh yeah, I have a lot
of dad jokes yet, but Ithink that's kind of a did did I

(12:45):
miss something? Oh? No,you you both nailed it. That's like
full Wikipedia, yeah for all.No, let's let's shift to because you
mentioned the try eighteen, So let'slet's jump to where life as you kind
of knew it shifted about almost fouryears ago. You said Adeline will be

(13:09):
four in December. So, Kat, why don't you give us just a
brief rundown of your pregnancy and thecoming to understand that that things weren't going
as smoothly as what you would havehoped, and kind of what that journey
looked like. Thank you. Yes, we after we had Autumn. I

(13:33):
was already older, but I wasonly thirty three, so I was still
under the geriatric pregnancy age, whichis a horrible term, so it's horrible.
So I had her, and thenafter autumn when she was born in
twenty twelve, I couldn't get pregnant, and so I went to fertility specialist
and they said the only thing youcan do is IVF, and so Jeff

(13:56):
and I prayed about it. We'relike, we're not going that route like
that, that's not what we're gonnado. We felt like maybe fostering or
adopting would be an option, andthen in twenty nineteen, we became pregnant
and I was turning. I justturned forty, so I became the geriactic
pregnancy lady. And we were veryexcited and we were very shocked because we

(14:20):
weren't expecting it. So we ourjourney is we always I always wanted,
you know, to have Jeff andI have multiple siblings, so we always
wanted like two or three, andthat that wasn't happening. So we were
excited and we got pregnant and wehadn't announced to our families yet, and
then Jeff Ottum and I drove.We were living in Charleston and Outumn and

(14:45):
I drove home to Georgia. Jeffwas on a mission trip with the students
in Kentucky, and I was teachingfitness at the time, and I knew
I was pregnant, but I hadn'ttold anybody. We were literally going to
the doctor's office on Monday, andon that Saturday, I taught a fitness
class and all of a sudden,I started bleeding, So I thought I
had miscarried. Jeff was driving back, so I called. I called him

(15:09):
as we were going to the hospital, and I said, I really need
you to find a way to getto Georgia instead of going to home to
South Carolina. So he there wasanother adult that was driving the van,
and so that that adult drove,and he rented a car and drove,
and so we just assumed. Ijust assumed it was a miscarriage. And
this wasn't on June fifteenth of twentynineteen. And then when he got to

(15:31):
the hospital, they had just toldus, in fact, you're still pregnant.
You're actually further along than we thought. And so we were like,
Okay, this was a miracle,Like what in the heck? Like we
just we thought I thought that wehad lost the baby because there was a
ton of blood, and then wedidn't lose the baby, and so I
was completely like, Okay, wellthis is a wonderful thing. But then

(15:54):
two months later, when we wentfor our anatomy scan in August, they
took like a really long time doingthe scan. We were supposed to find
out the gender. Autumn was withus, and then we found out the
gender. But then a few minuteslater, the doctor came in and she
had like this not so good lookon her face, and that's when she

(16:17):
said, well, we know you'rehaving a girl, but there's some markers
that we need to get looked at. So we she had some markers that
you had, and she didn't mentionany term. She just said, we
need to you need to go toan advanced doctor tomorrow. I've already made
an appointment for you. You needto go see what's going on. And

(16:37):
so I was devastated. I waslike, what in the world is going
on? Were sleep that night?Yeah, we were supposed to be celebrating.
And then the three markers that shesaid was I think it was clinched
fits, clinched fists, a chroidplexussis, which is on the brain and
then one artery in the umbilical cord, which is as just called it sua,

(16:59):
which never heard of that, neverheard of any of this. So
we were like, so I hadjust happened to type in three of those
terms which I shouldn't have. AndGoogle try to tell her don't be looking
it up because you know what Googledoes, you know they give you like
the worst case diagnosis. Well,the Google be he said, tries to
be eighteen and and then the firstthing it said was incompatible with life.

(17:21):
So I freaked out and I justlike lost it. So then the next
day we all went to the doctortogether and then this this doctor who's from
another country, and she looked.She came in and did the ultrasound herself.
We were that was the longest ultrasoundwe've ever had. It was over
an hour and a half, almosttwo hours of the actual doctor. Yeah.

(17:41):
Yeah, the ultrasound tech was inthere for like thirty minutes until the
doctor came in for like another houras they were trying to get like enough
data. Yeah. Then we walkedin to the she said, come to
my office, and so we allthree of us went to the off and
she says, well, I havebad news. You know your daughter has

(18:04):
tries to me eighteen she has allof these these these and these defects,
heart defects. She's not gonna makeit. Would you like to terminate?
You have another two weeks in thestate of South Carolina to terminate at that
so they're like sometime within the nexttwo weeks you can and so catch just
like staring at the wall, likeI don't understand what's going on. And

(18:26):
this is literally the next the dayafter you had the original skin that was
just supposed to you thought it wasjust going to tell you if we were
having a boy or a girl,were or yes, yes? So the
next day we've found out and thenAutamo was with us, and I immediately
started crying and I lost it.And the doctor doesn't have good table manners

(18:47):
like bet sign manner, and sheimmediately said she stopped talking. She's like,
do I do you guys need tocome back and meet another time when
you can listen. And I waslike, are you kidding me? Like
I'm whatever, I can't hear.Jeff will be able to hear for us,
Yeah, Like yes, I'm not. I can't really comprehend things right
now. But Jeff sod on themkind of left the room and stood out

(19:11):
in the hall and I said,okay, what do we need to do?
And I don't understand what this tristme eighteen? Like what what?
What? What's the next step?You know? But you guys knew,
like you weren't hearing trist me eighteenfor the first time because you had just
found that out the day day before, literally you had found it out on
your own and we googled, andyou recognize that this is the worst case
scenario. Oh yeah, and thenyou're and then we got the worst case

(19:33):
scenario, found it exactly to bethat. Yeah, So what kind of
options did the doctor give you?Great question? Yeah, she said,
well the termination, you know,and she said she's probably not going to
make it. There's a huge percentagethat she's going to pass away in utero

(19:55):
or if she is born, she'llbe still born, and if she is
born, she might not make itbut a few hours. Like she just
kept like if if, And thenshe said, I said, well,
we choose life. Doesn't matter,like will we We want to choose life.
And she said, well, thenyou're gonna have to go to somewhere
else, and then she's like,go down to MUSC. They take advanced

(20:17):
issues, meaning the Medical University ofSouth Carolina. This meaning that her facility
would not be able to provide youthe level of care to get her kids
exactly. Yeah, she said theonly thing they could provide is comfort care.
Right, was basically no intervention.And so I immediately responded with with
my with our background in seminary andjust what I believe personally, I immediately,

(20:37):
without breathing, said we're not goingto terminate. That's not an option.
We choose intervention. And so that'swhen we said we would like to
be transferred. Yeah, so shetransferred us to let's see. We went
home that night, and in shock, I took a couple days off from
the office, and Autumn was inschool and so like we were trying to

(20:57):
kind of process things, and thenwe had there we had an appointment.
It was thank you. We hadan appointment that next week done at m
USC and it was doctor Campbell,I think it's who it was, And
we sat down with her palliative caredoctor. Yeah, and she was absolutely

(21:18):
fabulous and we're sitting with her andshe said, listen, we here in
musc we are a trisomy friendly hospital. And I'm like what what. Yeah,
I was like I thought it waslike, oh, every hospital is
life friendly, but no, likeso it was like she said, we
are a trisman friendly hospital. Soyou know, if you choose intervention,

(21:40):
we can do these things. Inthe state of South Carolina. You can
have hospice to where you can havecare and full intervention so you're not like
hurting, you know, with withbecause sometimes when you choose hospice, like
it's end of life and it cannotget surgery, you cannot get any kind
of ILP. So she's like,if you're under twenty one, you can

(22:03):
and stay to South Carolina get this. And I'm like, okay. So
she's given us forty five things andwe're like, of hope, she's given
us hope. She's like if youknow, we're hoping she does, you
know. And then uh So thatmeeting lasted a couple of hours and she
really helped us. I think thatwas like a huge benefit that the palliative

(22:23):
care team was there and she wasgiven us options and she's like, Okay,
we're gonna do another ultrasound next week. You're gonna come back every two
weeks. We're gonna do another ultrasound. We're gonna kind of walk through this
and if you know, her heartbeat is still there. We're just we're
gonna keep moving forward, and wehad to do something. She then assigned
us to do what we call abirth plan. So I took that on

(22:45):
because Kat said, I can't.I can't type if she is still born,
here's what we do if she cats, like, I just can't,
So I said, I'll do it. So I kind of researched a little
bit and ask a few questions online, looked, and so we typed three
and a half page. If shedoes this, this is what we want
if she is still born, welike to have some pictures if this is

(23:07):
you know, you know. Sowe had literally every scenario, like if
she can't breathe, we do wantto get an intervention. If she can't
eat, we do want intervention.You know. You had to kind of
spell it out, and then weput it in her file and we went
back every two weeks with the palliativecare team and it was a hopeful situation.
Yeah, And we were like,you know, how many trismainteen babies

(23:30):
are born here? And she's likea few each year and most of them
don't make it, but some do. Like so we were like, okay,
okay, yeah, and it soundslike it sounds like they were giving
you a breath of fresh air whilealso fully preparing you for every possibility but
also not ruling out best case scenario, but kind of giving you the tools

(23:53):
to be able to navigate reality ifand when things went south. That is
correct, And I thought that wasa huge thing. Yeah, And like
I said, we had never likeeven heard of this world before, and
the palliative care team was master that. That's one of the sorry, that's
okay, I pushed the wrong button. That's one of the first things that

(24:15):
we tell people. One of thefirst things we tell people when we hear
they have a trusting a team diagnosis, we say, find a palliative care
team like at the local hospital.Like that is going to be like huge
for you, you know, becausethey really helped us begin our our journey
down this road. And so wekept going back to her and one of

(24:41):
the guys at one of the there'sa surgeon, a general surgeon that was
at our church, and he saidhe recommended us doing like some grief counseling
because he's like, you guys arealready grieving her death, like you that
we were. They were seeing that. He was noticing that in his like

(25:02):
medical brain or whatever. He's like, you need to talk to somebody like
about this. And so we startedmeeting with the lady once a month just
because of our schedule. We metwith her once a month over in Charleston.
She helped us. She was like, don't know what she say,
like, don't do a nursery.Don't do a nursery because the worst thing
is like to decorate, put everything. And then like she pass away,

(25:26):
then you're like, you know,she just she was giving us some just
be mindful that, you know.And then she was like, don't have
a baby shower, have a celebrationshower, and you know, ask for
like you know, Amazon gift cardsor like Walmart gift cards or whatever,
like you can buy diapers and wipesand clothes. But if she passes,

(25:49):
you can, you know, stillget stuff for your family like she gave
us. We're like, man,this stuff like never crossed our mind,
you know. So she was hugeand helping us think through it. What
would you say emotionally and then shehelped Autumn a little bit too, trying
to kind of talk with her,and Autumn was trying to process it as
well. Sure, and Autum wouldhave been seven at the time, six

(26:12):
or seven. Yeah, and soshe she was processing that and uh,
which is difficult because Autumn wanted alittle your sister to play with, yeah
and such and so so then upuntil I guess you want to talk about,
like, how was the got closerto birth? Do you have any

(26:37):
No, that's great, Yeah,let's go to to actual actually getting to
meet Adeline and what that was like. So they we wanted to have her
naturally, if at all possible,So we they wanted us to induce at
thirty eight weeks and six days.They didn't math and for because of her

(26:57):
heart defects that they've found and becauseof other things. They said it's best
not to wait till thirty nine orforty, like, it's best if she
can make it to like thirty eightweeks, that's great. And so she
was actually born alive at thirty eightweeks and six days on December seventeenth of
twenty nineteen. And you pushed threetimes. Yeah, it was like she

(27:22):
was born and four pounds, nobig deal, Yeah, four pounds seven
ounces. Yeah. So she wasyeah, and uh, you know,
the doctor in my heart. Iwas in the room, and I mean
she came out, not breathing,and she looked kind of grayish, you
know. I guess all babies whenthey're born, it's like what in the

(27:42):
world, you know. So theytook her into the other room, and
as she was leaving the room,she went like like, it was like
this little random noise, like asqueal, and the nurse beside me,
she goes, hey, we'll takeanything, right, We'll take anything.
So mom, what was that noise? How did that noise feel for you?

(28:03):
I wasn't shocked that she was alive, Like I was like, am
I pushing out a baby that's gonnamake it? And then when she was
born alive, I was just likeincomplete, like cloud nine. I was
like, are you kidding me?And then the NICKU team they let me
hold her for a moment, andthen the nick you team chuck took her
and did a full you know evalYeah, and I was able to go
and stand behind the ladies and theywere she was kind of her arms were

(28:27):
kind of you know, moving alittle bit, and and they were trying
to figure out things, and onething, Praise God, from the palliative
care team, they said, whatwe've seen in the past is tries to
be eighteen babies cannot swallow. Theywon't swallow. So, you know,
twenty thirty years ago, a triesto be eighteen baby would be in the

(28:47):
nick and you know, the bottle, and they drowned because they just didn't
know. They just didn't like you. There was no genetic test, and
so so we said to begin thepart of our birth plane was if she's
born alive, we want an ingytwo put in just kind of like within
the few hours, like just goahead and make sure she can eat exactly.

(29:10):
And so they because we saw likeif you bypass the throat then she
can get her nutrients. So theysaid, first let's make sure she can
breathe on her own, let's getsome oxygen, and then the ingy tube.
So I was in the other roomand they were assessing her and pushing
on her, you know, andso then they put her in the little
I taught it. I caught itlike the incubation chamber or whatever, like

(29:33):
they put him in the you know, you know, like the little plastic
thing. Yeah, they put herin there and they sealed it up and
then they rolled it out and they'relike, we're gonna go to like the
O R and kind of you know, insert tube, try to you know,
see all these little things that wecan't do in this room. So
I was like, okay, ohthat was an Adeline snort. But yeah,

(29:56):
I think the hardest part was justnot knowing. Like she left the
room and I came back in theroom and I was like, cat,
she was moving. That's all Ican take. She was moving. They
left the room and then we waitedand waited, yeah, and then she
she brought them. They brought herin the room and she was in the

(30:17):
little plastic thing and had a veryfun you know, first time seeing her
and Autumn saw her. We gota good picture of of all three of
us and Kat's faces like so happyand me and Autumn are looking and you
can see Idle and like in thelittle glass thing and so like it's a

(30:38):
it's a cool It was a goodmoment, but it was a scary moment
because now how many hours is shegoing to be here? You know?
So that's where we went into Soit's your hour's in and you're already seeing
this fierce side of your daughter,Right, what's it? What's going on
in your minds as you're realizing notonly has she surpassed the odds of making

(31:03):
it, but she's doing well inthese first minutes or hours. I was
ecstatic, Yeah, it was.I was ecstatic. Like I was like,
I don't know, Like everybody waslike, you need to stay in
the wheelchair, you need to stayin the wheelchair, And I was already
ready to walk, like and youhad to, like m USC's weird because

(31:25):
you had to go like down theelevator and walk across the hospital and then
go up the elevator to the nickYou. Yeah, but I was like
I couldn't sleep because I just wantedto go see her and well, and
they've added on like five times sothey had to move the departments around.
So that was kind of one.It was ecstatic, and then but then
we got overwhelmed because everybody was meetingwith us in the room like this is

(31:48):
pre COVID, So we had peoplefrom church like and we're like, oh,
hey, we didn't expect to seelike fifty different people, Like no,
sleep, and everybody was like comingaround, and like people didn't they
were coming, and they're probably alsocelebrating with you because they were, they
were probably preparing to agree with youyes, to which some of them told

(32:12):
us later, like we wanted tokind of be We came and ate dinner
and Charleston because we wanted to kindof be close because we didn't know sure
if she had passed. We wantedto kind of be you know, Yeah,
I want to pause for just asecond and recognize that not everybody has
that experience. It's true of peoplethat are thoughtful and like prepared for that

(32:34):
moment with you, And like,so, what was it like to know?
I mean, obviously that's probably alittle stressful when you're you've just given
birth and all these other things aregoing on, You're still navigating the medical
side of Adeline's journey. But what'sit like to on the relational element to
recognize that in such a tough situationthat could go either way, to have

(32:57):
people like scheduling their day and theirmoments to make sure that they're trying to
be as the friends that you needin that moment. What's it like to
have that, well, I say, I mean it's to me, it's
it's the it's the beauty of thethe local church body is really what it

(33:19):
is. And Biblically we're supposed tobe. We mourn when others mourn,
We're joyful when others are joyful,you know, and the idea of just
being in the ups and downs ofother other people. Because I was there
for many folk, as you know, on staff there at the church.

(33:39):
I mean I tried my best tobe that to them, sure, and
so it was kind of like theirturn for us, even though we didn't
expect it or didn't know, andit was surprising. It was hilarious because
as one family would leave, Iwould sit in a chair and then and
then maybe fifteen minutes and we'd heara knock and I'm like, oh,

(34:01):
it's so in like you know,and and then Kat would be like,
that's great. I'm so glad they'rehere, and I am too. But
it's just like it's a lot.Yeah, no, yeah, everybody that
came. It was a lot,but it was it was a clear sign
that you know, they cared andsuch, and so yeah, it's huge.
It's I deal with people quite often, you know, over at at

(34:24):
the church. Who who are youknow, homeless or they have some type
of issue in their life or addictionor something and they're they they're struggling and
they have no one to struggle withthem. And I try to tell them,
like, you need to get youneed to get like you need to

(34:44):
get a part of like a localchurch. And I was like, you're
welcome to come here, you know. Oh, I go to a church
over there, And I was like, well, when's the last time you
went, you know, because likeduring these times is when these people can
can be there for you. Andit's the epitome of doing life together.
It's like it's actually having people inyour corner exactly because it's gonna be hard
times. There's gonna be creballs,there's gonna be tornadoes in your life,

(35:05):
there's gonna be trials, and butthere's also gonna be joys as well.
And so I felt it, andI know that you felt it. Yeah,
yeah, because it was extremely encouraging. They even had our the church
gathered that night that we were inlabor and prayer, had prayer time the
whole time we were in labor.So it's pretty remarkable that people would be

(35:25):
willing to do that, and itwas it was ecstatic and it was really
encouraging, but then it was overwhelming. It was like I was struggling with
joy but also exhaustion from just havinga baby and then throwing hospice at us
and then wanting us to go homeand then telling us about heart defects and

(35:49):
about her issues, and so itwas. It was wonderful, but it
was also overwhelming at time. Yeah, because we went from Okay, she's
here, Okay, how long doesshe here? I'm not sure? Okay,
now we've got twenty five things we'vegot to figure out. And the
first thing is we gotta figure outwhat we're gonna do with our heart.
You know. We're like, dowe schedule it? Like what if she
passes away next week? You know. So we were like juggling that,

(36:12):
like we don't. So then thethey were like, the best thing for
you to do is go home onhospice, you know, and we'll support
you, we'll care for you.And so we were about forty five minutes
from the hospital something like that,maybe fifty minutes where we were at our
house, and and then we hada we were at the hospital. How

(36:36):
long we were in the hospital forsix days, and they tried to kick
us out. Not kick us out, but they tried to tell us to
go you can go home well afterlike four or five days, and I
said, I don't know, Idon't know what I'm doing. I's intimidating,
are you kidding me? Like amedic taking a medically fragile baby home,
And it was very intimidating, andit was right before Christmas, so

(36:57):
we actually took her home on thetwenty third. Yeah. I had to
like build up confidence, like youknow how you have to like prepare yourself.
So I had to like, Okay, I can do this, No
I can't I can do this,and and then they're like, well,
we will have a hospice nurse meetyou at your house. Yeah, when
you get there. And so thatwas like finally we built it up to
go home, so we were actuallyable to be home at Christmas. And

(37:21):
then and your sister, Yeah,don her sister has really been huge and
her sister and her sister's husband andJeff there in the medical field, and
they've been huge even before she wasborn, like helping us think about like
when I was doing the birth planand I was like, Don, what
should I you know. She's like, okay, well, let's think about
this. And so Don was like, I think it would be good to

(37:44):
have Christmas with her because you don'tknow how long you're going to have her,
right, so take her home,have Christmas at the house, pictures
the trees there, you know,like, you know, enjoy that time.
And Kat was like, that makesa lot of sense. Do that.
So that was kind of what Ithink helped us a little courage to
take taking point for you. Yeah, so we were home and Christmas game,

(38:08):
and then the new year came andwe're talking January of twenty twenty,
so pre COVID still, and thenwe're like, okay, you know this
and that and uh. We basicallytook a week at a time, you
know, some day at a time, but like the nurse would come like

(38:30):
on a Wednesday, like in theafternoon, the hospice, the hospital,
all the hospice people come to ourhouse. Yeah, she'd come on Wednesday
and she checked her vitals and shesay, okay, she's breathing good,
like you know, and we're like, what do we do like on Thursday
at two am if something goes wrongand she's like, called this number.
So we had a number that wecould, like in case something happens,

(38:51):
call this number. Basically, itwill notify the hospital that you know,
the ambulance will come, and thehospital will know you're on the way,
and they've already got her records sothey know her issues. And so we're
like, but at this point,you're still you're still looking to like,
oh man, you're on borrowed timeif sure? Of course, Yeah,

(39:12):
Christmas had happened, We're in thenew year now, and then April came.
Well, we were seeing a cardiologistsevery other week. We were seeing
like multiple doctors all like hospice,social worker, the counselor, a chaplain,
a child life specialist was spending timewith her, and it was all
going well. We were having peoplethat were coming to us weekly supporting us,

(39:36):
and we were being very guarded,like you're saying, like do we
want to smile? Do we wantto be joyful about this? Like you
know, that was kind of ourThe phrase that I say now is that
our upset for a long time isgrief and joy co exists. Yeah,
we learned that that does that happens, Like we were joyful that she was
with us, but we also weregrieving, like how long do we have

(39:57):
with her? And you're recognizing thatthere's like risk involved and allowing yourself to
be hopeful. Yes, yes,yes, yes. And so then we
had the sweet old ladies at church. She's got her ten fingers in her
tin toes and we're like, yes, but there's a lot more to it
than that, you know, likeyeah, they're like they're just singing it
from you know, because no onehad never heard tries metaining, even at

(40:20):
our church, like they had notexperienced this realm. And uh so she
didn't go to church at all.We didn't. She did not leave the
house other than to go straight tothe doctor straight back. And this was
pre COVID. Yeah. And thenand then on April second, April second,
like you know how the world kindof started, Like they canceled schools
in March, like in mid March. I think it was pretty much all

(40:43):
around they were canceling. And thenall of the doctor's appointments were kids.
Yeah, they were like all ofthe hospitals. Nobody from hospital. I'm
sorry, I'm loud. No,you're fine, you're great. So you
went from having a bunch of careat the house. All of a sudden,
just nothing literally came Me and Catyes, and we didn't have anybody
from the church because nobody wanted toget nearest because it felt like it was

(41:06):
a puck puck deliptic, you know, like it was just like they were
They were like, we don't reallywant to come over because what if my
sniffle would send Adelinde to have pneumonia? Like we don't know, right,
So we all that everybody was canceled, like everything was canceled, and we
were home alone by ourselves. Andthen I heard like some weird sounds in
her belly, and I called thehospice and I'm like, no, less,

(41:28):
well, yes, what happened.Okay, I'm sorry to cut you
all tuney, but it's okay.No, I want to say something and
then you can correct me if I'mno, go ahead wrong. I heard
weird things and I told the hospicenurse about it or the hospice team,
and they're like, don't worry aboutit, it's fine. And and then
and then on like April second,I think that night she was not breathing.

(41:49):
Well you can go from there.Oh, it was fine. We
had the pulp socks on her,so like she was dropping. Okay,
she had normally dropped, but thenI kind of repositioned her, so then
she kept dropping. So then Idid the glider. We had this glider
in the other room, and theglider I could always get her calm.
I could always rock her to gether calm. Well, then after about

(42:12):
thirty minutes of her still dropping,still not being calm, it's what like
six o'clock in the morning at thistime five o'clock in the morning, and
her breathing was like like dat,And I was like, this is interesting.
So we called the hospice number,the nurse who was on call,

(42:35):
and she I said, I don'tthink she's breathing kind of normal. So
then she called our like doctor,doctor person. I guess it was the
hospice doctor. Yet the hospice doctor, and then she said put it on
speakerphone. She listened to her forabout five seconds and she goes, yeah,
she's got something in her lungs.You need to take her like to
She told us to call nine oneone. Yeah, So we called nine

(42:58):
one one and had to explain overthe phone, we have a medically fragile
baby, and we need to getto MUSC. And then we called a
friend from church who came over andpicked up Autumn, and I got in
the ambulance and I held the maskon her so that her breathing, because

(43:19):
if you took the mask off,she was like in the seventies, like
it just scary, yeah, andthen she would like pop up and then
she'd stay in the seventies. We'relike, that's not good. So I
put the mask on her and shewould go up into the nineties. So
then we got the MUSC and we'rein the ED and we're like, it's
like a ghost town. It wasnobody there. Nod just started. It

(43:44):
started, and so yeah, sowe're there and they're all in like their
full bunny suits and everything, andthey're reading instructions of like wash your gloves,
throw your gloves away, put onanother pair of gloves, wash those
gloves. You know, like whatbecause they were trying to be COVID stuff
and so they're like, well,her short breath or really don't know what's
going on. So then they didan X ray and realized, oh,

(44:04):
sixty percent of her intestines are inher chess keaty because she had a diaphragmatic
hernia and like all her intestines likewe're coming up, and so she couldn't
breathe because exactly. And so they'relike, we're gonna have to do surgery
and we're like, oh dear,because that means put the sleep means may

(44:28):
not wake up, and so we'relike, oh boy. So we kind
of processed that and said, okay, you do what you gotta do.
And we were wanting them to gofrom the n G tube to the G
tube, but she had to bea certain amount of weight before they would
do that, and she was withinlike half a pound. So the doctor
was the surgeon was like, listen, I'm gonna be cutting right there.

(44:52):
We'll do the repair. We'll puther G two be in. She's only
asleep once, and I'm like that'sa win, yea. So he's like
all right, and he's like onthe phone through a glass door because COVID
is kind of like attacking everything.So that was April like second or third,
something like that, and then shehas the surgery that day, like

(45:14):
she went into the o R likethat day. It was an immediate emergency.
Yeah, it was emergence. Soshe went in and we just were
kind of waiting for an hour ortwo and Autumn was able. She was
with friends, so we're like andI was like, I was they they
it was before they had the rapidCOVID test, so they still had to

(45:35):
test her to see if she waspositive for COVID, but it didn't come
back immediately, so we were wewere put, Yeah, we couldn't.
We couldn't leave the room. AndI was trying. I had a full
bunny suit on and I was tryingto like pump because I was pumping good
because we were excited to see througha pump. Yeah. It was crazy,

(45:58):
man. But she the DOT said, well she once she's once again
surprised us. She's recovered better.Yea, So then we thought she would
ye. So from we're not sureif she's even going to survive the surgery.
So she survived, she's fierce,that fierceness to show up again.
Yeah. And then what's interesting isthen we're watching the TV and the governor

(46:20):
comes on and goes South Carolina isnow stay at home state of emergency.
So we're like, oh, thisis fun. As if you didn't already
have fun. So they're like nobody'sallowed to do, you know, because
they were like, you know,it was shutting down, like it literally
was. And so the people thatwere that Autumn was hanging out with,
they're like, what do we needto do about this? And so Autumn

(46:43):
went to like do a different houseand she was thrown around a different houses.
Yeah, she was trying to likebecause we were trying to take care
of her. And then Adelin wasin the hospital for what she was in
the hospital for less than a week, like it was, it's amazing,
but we couldn't find food, Likeright it was before food was the cap.
The hospital cafeteria was closed. Therewas actually even restaurants in the area.

(47:05):
Oh yeah, because you couldn't dodoor to ask or anything that damn
because they were like not even bringinganything to you. So what was I
think we did? We rated afew vending machines and we finally found people
that would deliver food though. Yeah, and then we had some friends from
church they brought like they left itbeside our car in the parking day because

(47:28):
they're like, you're not supposed tolike touch and see. So I told
the Naris, so I'm gonna goout and get something from the car,
and she's like, okay, we'llmake sure you wash this and do this,
and I'm like, oh, okay. So I went and grab the
groceries, so we were able tokind of eat and such. But then
we got home and the hospice continuedlike we were able to continue and she

(47:51):
was able to continue to thrive andsurprising people. I guess you want to
fast forward to Uh, well,I think he may. Yeah, I'm
gonna I want to come back andget an update on, like from the
medical standpoint, how we how likewhat went like give us a brief update
from there to where we are today. But I want to pause for just

(48:14):
a second because I think even nowwe're in you know, we're three years
removed from that weirdness of all thethings shutting down and some of it being
maybe overkilled, but some of itdefinitely being effective in you know, being
careful for especially the most fragile amongus. But we're recognizing that on top

(48:37):
of the medical and scientific elements ofthat of dealing with COVID, there's emotional
and mental elements that went along withthe shutdowns and all those other things.
And I'm curious for you guys inthat situation, have you seen or even
did you know in the moment howmuch that was impacting your lives in what

(49:00):
was already a stressful moment of dealingwith the fragile nature of adeline situations.
So then also the relational and mentalhealth elements of that season. Yeah,
I started struggling with anxiety whence Ihad never had before, and I I'm

(49:20):
an extrovert, and the fitness gemswere closed down, our church was closed
down. We were literally isolated,and introverts may have loved it, but
it was a misery, miserable experiencefor me because I had no adult interaction.
Nobody would come near us because ofour medically fragile baby. So I
started taking a turn for the worst. And after the hospitalization, because we

(49:44):
were even more isolated when they didall that shut down and nobody would come
near us, and it was therewasn't a light at the end of the
tunnel, so we had no idea. So I really struggled. I couldn't
work out, and I don't workout well by myself. I like people
I like and people motivate me.So I'm not like one of those self

(50:06):
motivators that will stay at home andjust do my own workout. I like
to be with others that gets memotivated, and so I didn't have that.
I didn't have anything. So mentalhealth has been a struggle and and
I still am in that. Istill struggle because every time we hear beep
or something, I'm like, huh, like if there's if is she hot?

(50:28):
It? Like we have we gointo that. I'm in that constant
fight or flight mode and so I'mjust like always firing those neurons. I'm
not medical, but you know,just I'm always like going like I'm always
in that tense situation and it's hardfor me to calm down. So it's
it's been The mental health aspect hasdefinitely been a struggle and still a struggle

(50:52):
even though things are open up.You know, I'm a I'm an extrovert,
but being at home with her isdefinitely I don't get to talk to
adults except for doctors much. Yeah. So and when you guys live,
we're an hour and a half inchange outside of Atlanta where you live now,
but you're the story you've been tellingis that we were in South Carolina.

(51:13):
So yeah, tell us how thattransition happened into what degree navigating some
of that stuff may have played intothat. Yeah, So the mental health
aspect, I told Jeff and thatearly that like after it was like in
May, I said, I can't, I can't, I can't live here
anymore. My dad had was diagnosedwith als my mom was recovering from cancer

(51:34):
that they were both diagnosed at thesame time. And I was I,
we couldn't go there. My dadwould never meet Adeline because he was stuck,
you know, in a wheelchair inanother state. And I said,
I can't do this anymore. We'vebeen here for eight years at this church,
we've served, well, it's timefor us to resign. And well,
we loved the people. We stilllove the people there, but but

(51:55):
it was like with COVID, likeit added that extra I'm going to no
support now. The people cared aboutus, but like we weren't. I
mean, you couldn't get versus likebeing around family. Right, it was
more difficult to receive, to giveand receive practical everyday care because of the

(52:15):
that's been so implemented. Yeah,so we went to the I think the
key to me was we went tothe cardiologist back when they were allowing us
to start a few appointments. Andthis was around end of May, well
May, and and he was like, we need to be thinking about her

(52:37):
heart surgery. If she makes itto this pound, you know, she's
getting close. If she makes itthis pound, huge percentage, her heart's
not gonna beat, can't support it. And so he said, we've got
to think about heart surgery. AndI was like okay, and he and
I looked at him and I waslike, if it's your daughter, who

(52:58):
you weren't cutting on you, whoyou weren't cutting on her? And he
said, we got a lot ofgreat people here, but he said,
over it in Chowa. In Atlanta, he said, they've got some fabulous
pediatric surgeons. And he said Iknow a guy over there. So he
like emailed him or whatever and said, you know, hey, I've got
this family. Would you consider youknow? And he said, actually I

(53:22):
would not. He said, Idon't mind doing it. But there's like
my teacher, you know, doctorCanter. He's like, he is the
one that you want to go to. So we're like okay. And so
we're sitting down at this dinner tablewith her family. We'd they'd come over,
and we were in the South Carolina. Her brother and sister came to

(53:45):
kind of be with ad one becausewe didn't know. So we're sitting at
the table and I'm kind of likesad, and her brother looks at me.
He's like, you know, how'sthings going? You know, I
know COVID's kind of ruined them.And I said, well, man,
you know, like how to Lynnneeds to get her heart surgery, know,
and so, but I really wantwe probably want to do in Atlanta.
And he said, well, ify'all move, you can work.

(54:07):
He owns a computer it company upin Delanago, which is about twenty minutes
from here. He's like, youcan work for me, and I said
okay, and then her sister waslike, you can live in our basement.
And I was like income and shelterand Adeline care and I was like,

(54:27):
okay, God, the puzzle piecesseemed to be coming together. Yeah.
So we had a plan and wefelt like God kind of like orchestrated
it, and we're like okay.So I went to the church council and
was like I'm gonna have to stepaway and such, and they understood,
and they were you know, theythey saw the situation and I explained it

(54:50):
to him. You know, it'sIdlin needs care. You know, we
need to be around people, familyand such. And so we moved the
July and August of twenty twenty.And so we yeah, we started packing
up and we moved in July.Yeah, that's right, July, because
my last Sunday was like August thirdof twenty twenty. August third, August

(55:12):
fourth was my last Sunday there atthe church, and they had moved over.
And with Adeline, we had tolike we had auction, we had
all her stuff. We had likea little generator in the car with like
all the stuff plugged in because she'slike being moved like six hours. So
we had to make sure, youknow, and on the way, do
we need to stop in Augusta atthe hospital. We got this address,
So we got to her sister's housewho is the nurse, and her husband's

(55:37):
and nurse too, and they're like, they're in our basement. We can
be helpful. We were gonna meetwith daughter Canter and find out, you
know, the timing and all that, and so what really hurt a lot
in our hearts and emotionally was wenever got to say goodbye to the church.
Yeah, we were there for eightyears, you know, loved a

(56:00):
lot of people. They had likea drive by it was with COVID.
They had like a drive by likecars in front of our house and we
just waved, you know, andwe get to see people, but like
normal normally, Yeah, it's likeyou have a dinner and like you get
to hang out, you like sharesome memories, you know, like it's
a meaningful thing. But we justdidn't have that, and so that was
so hard. The closure there waslike ripped. Yeah, and it's its

(56:24):
own type of grief. Oh mygosh, that was grief because we had
sacrifice and done so much in thatcommunity and in that church and then we
couldn't see goodbye. Now, somepeople did say goodbye to us over the
phone, you know, when theysaid, you know, and we were
able to kind of you know,uh, the last church, last service
I preached, and then they gaveme like a blanket with all our different

(56:46):
t shirts that we had done,and they gave us like a little book.
It's sitting over there. They gaveus a little book with like some
memories and such. So it wasthey tried to get but it wasn't like,
but there was like twelve people inthe sanctuary. Everybody else was online,
right, you know, so itwas just like it wasn't the same.
So that was really difficult to navigatethat. So so then we're in

(57:07):
the basement now Don's house. He'scoming and I'm driving up to delan Ago
work in it and trying to figureout. You know, I've always been
a nerd and a geek, andI love, you know, computers and
such, and so I always justkind of trial and error figured it out

(57:29):
and uh, being the kind ofyou know, technology guy. And so
when I was working with her brother, I got I had to learn a
whole new skill set. And thenKat was one hundred percent calling doctors,
visiting like her sister would kind ofride with her to the hospital or whatever.
And then we tried to get homehealth care nurses. So we got

(57:52):
a couple of them. They wereonly able to be there what like ten
hours a week or something. Andthe hospice, I mean not hospice but
Medicare Medicaid always get them confused.Medicaid is for thank you, honey,
Medicaid. She had like seventy hoursof approved time where a nurse could come,

(58:12):
but we had like ten field becauseof the nationwide problem there's slackage but
paid enough. So anyway, we'rethere and met with doctor Canter and he
says this, He said, oh, I've done she had t tetrology of
follow. Yeah, so they calledt OF. So there's like four issues
going on with the heart, whichis tetra. Okay, And so he

(58:34):
said, I've done a thousand ofthese surgeries, he said, and I've
done five tries to be eighteens.And he said I can repair her heart,
but it's up to her to recover. And we're like, where do
I sign you know, like becauselike I trust this guy. Yeah,
he's done a thousand of these andhe's done five specifically. Like I was
like, oh, yeah, I'mglad this is the guy we're coming to.

(58:57):
Yeah. So we made the callto come to Choa to make the
move. Then it was in October. It was in October of twenty twenty.
You want to talk about the surgery, well we can, yeah,
go ahead, Okay. It waswell, she was supposed to have it
in September, but she was Theyhad all the pre op appointments. We

(59:19):
found out that she had a coldthe day, like the day before her
surgery. Well, they canceled that, you know, and I grieved that
because I'm like, well, becauseyou you I was just starting to get
back into teaching fitness classes and soI had to cancel that, and then
I had to basically cancel what Ihad just started. And then we had
already booked a hotel room at thehospital, took off the week, and

(59:44):
he took off the week, soit was like we had prepared and then
they canceled it. Yeah, soI grieved. I was sad because I'm
like, this takes a lot ofpreparation, so then there's probably a certain
sense of like this is gonna helpfix a lot, and like it's kinda
it's almost like a milestone you cankind of celebrate. Didn't exactly. Yeah,
So I wasn't looking at working,like, I wasn't really looking at

(01:00:05):
a lot of positions and teaching.I wasn't looking for a lot of classes
to teach at the time because Iwas waiting for her to get through it.
So then I had to put itoff for more time. So she
did have it on October twentieth oftwenty twenty and she was in there for
eight days, and they all said, you know, the cardiac anisthesiologist at
the surgery lasted for over eight hours. They had to go back in because

(01:00:29):
the pulmonary valve or whatnot was stilltoo thick and that would have caused problems.
So we went back in. Soit took like over eight hours,
which was really long. And thenthe cardiac anisthesiologist came in, which is
a thing. I didn't know thatthere was a difference, but she said,
oh, yeah, she has adifficult airway and as she gets older
it's going to become more difficult.You should consider jaw distraction surgery. And

(01:00:52):
that was when she was only tenmonths old. Well, and so I
said, okay, thanks for lettingme know. And she recovered beautifully,
like she had moments, of course, but she was only in the hospital
for eight days. And the doctorby the end of the time we were
there, he was like, well, she has proved me wrong. She's
recovered a lot quicker than we thoughtshe would. She has proved a lot

(01:01:13):
of people wrong from those first coupleof days. Yep. So she came
home and has been so remarkably doingbetter since. And you know at that
moment. But then but then cardiacwas no longer the issue. Her heart
was repaired beautifully. It was thebig issue that was starting was her oxygen
in her airway right, and shewould get when she would get a cold,

(01:01:35):
she would get hospitalized. And itbecame more often, like more,
every more frequently, and it becamewhere it was just she would go into
respiratory failure. And so all connectedto the thing that that in a theysiologist
recognized is that this is going tobecome your next problem. And she was
right about that. And you guysrecently had a surgery to then to do
the same surgery that she said youare want to consider. I had asked

(01:01:59):
the E and T doctor after thecardiac nfccy all just told us. I
asked him when I saw him thatleader, like a few months later,
and I said, would you pleaseconsider jaw distraction surgery? And he said
no, and he said, sheshe doesn't need it. We don't want
to go in that invasive I'd ratherbe conservative. And I said, okay.

(01:02:20):
So I pushed for it in twentytwenty one and he denied it.
So that was discouraging, But Ibelieve I went with him because I just
agreed with him because well, he'sa doctor. Maybe he knows more than
what I do. You know,I was kind of pulling for that jaw
distraction. He said, no,let's wait, and then we waited,

(01:02:42):
and I would say in twenty twentytwo, she was in the hospital for
a week every two months, Sothat took a mental emotional toll on our
family of light. Sure, okay, here we go back back down,

(01:03:06):
you know, And it was mostlyalways connected to a yeah, always,
because what would happen. She hasa seven millimeter airway, So just like
me and you, you know,we get a cold, you get some
snot in there, you just getrid of it. Sure, you know
she can't she can't do that,Like she doesn't have muscles there to do
that. So just think about thesnot just like hanging out in your throat.

(01:03:30):
How you're gonna get in the airaround that, right, So then
it like the pulse ox would likeit's she's not breathing well, so I'd
have to get the oxygen on her, and then it would get to where
like she'd get a fever and thenwe're like, okay, pneumonia is going
to set in if we don't getto the hospital. So you had a
year of data that says this thingthat we asked for a year ago actually
is needed, yes, And sothen you were able to get that scheduled

(01:03:53):
for this year, right. No, we never, it wasn't scheduled.
It wasn't scheduled. Uh. Wewhen we went into the hospital, we
had been in the hospital every monthSeptember, October, November, December for
it. And then in January shewas hospitalized again and that's when they intubated
her and on the fourteenth and that'swhen a few hours later the E and

(01:04:16):
T met with a plastic surgeon.And we had never I never even told
her that I really wanted her tohave it. She came in with the
surgeon and said you've got to havethis surgeon like today And I said,
I said this two years. Yeah, that's frustrating. Well, a beautiful
thing about the the stay. Thisis the way my brain thinks. I

(01:04:38):
think, you know, God orchestratesso many things that we kind of miss.
And so whenever she was going tobe intubated, three different teams tried
to get down her throat and they'relike, Nope, can't do it next
team? Nope, can it?Like she's getting to where like this is
this is the end of a longcode, like the code was bad,

(01:05:00):
and so they're like, really justgonna do the on call E and T,
and so they called her. SoI see this. I'm sitting out
in the lobby because they're like inthe room freaking out. So I see
this lady run by me and likeyou know, street clothes or whatever.
She runs by me, and thenabout thirty forty minutes later she comes back

(01:05:24):
out and she goes, are youmister Leopard? And I was like,
yes, ma'am. And she's like, well, she said, I used
to work at Boston University and whichis a tryst to me friendly hospital,
and she said, seventeen years ago, there was a tris to me eighteen
baby that had difficult air weight andI used this not in the text book
technique to basically save her life.And she said, I used that technique

(01:05:47):
with adelin tonight. She said,last time I used this was seventeen years
ago. And so I was like, wow, she was on call,
Like God used the hospital scheduling toreally save her life. Because like the
three teams that tried like it waslike, we're not gonna do anymore.

(01:06:08):
And then she comes in and she'slike, however, it's not a textbook
one. So within the next twentyfour hours, we need to go in
the O R and put like areal one down in there and make it
stronger and more Uh what's the word, Uh, make it a word,
will stay longer or whatever. Sothey did that. They went in the
next day and she was there andwhat did she say about the tools and

(01:06:30):
such? Oh? Yes? Andthen yeah, so since since that situation
happened, because what happened was whatwas that she ran? It was in
the middle of the night and sheliterally parked her card on the front and
said, who cares if it getstold, Like I'm going she ran up
the stairs and then the ICU roomwas not equipped with all of the proper

(01:06:51):
equipment for a difficult airway. Sosince Adeline's situation back in January, they've
updated the rooms in this hospital withbetter equipment for innovation to be better equipped
for a moment like that. Yeah, so it's almost like the finally got
to the point where your attempt atthe band aid fixes is not going to

(01:07:15):
work. It's time to do theright thing. And so the surgery that
you'd asked for in twenty twenty one, or asked for it to be considered,
tried to push for. Finally outof absolute necessity, was done.
And that was in the beginning ofthis year. That was in January of
this year. Yeah, and thatyou were saying earlier before we started recording
that that has completely changed her pathand given her an opportunity to breathe more

(01:07:41):
regularly. And I would assume thenwhen she does have a sniffle, better
be able to handle that. Andand we've got behind you, there's the
suction machine there. When she doeshave a sniffle, because of her airway,
we can actually help it out.Yeah, and it's we go to
the hospital. Yeah right, youknow, so we can eliminate like that

(01:08:04):
trip where that's really what they woulddo is they would go they would have
to suction her every four hours tokeep the snot out. But they had
to take like there, you hadto be a respiratory therapist. It was
a deep suction. It wasn't justlike superficial stuff that we can do at
So, yeah, we can perfeseshe was getting stuff stuff down there.
Yeah. So yeah, then uhyeah, so so, yeah, I

(01:08:28):
was going to say that with themental health aspect, it's also affected Autumn.
And so last year, when wewere getting hospitalized so much, I
was having to stay in the hospitala lot, and so Autumn was dealing
with separation anxiety. So the mentalhealth aspect, you know, like when
you think about choosing life for yourchild, you don't think about how it
affects everyone, Like I just didn'tthink about that. So it's affected her

(01:08:56):
and she's been diagnosed with anxiety aswell, and so she sees a counselor
and it's been really helpful. Sowe have literally all been trying to recover
from that situation. We're all strugglingwith anxiety from being there for three months
and now we're trying to get backto a normal, kind of a weird
normal way of life. Yeah.Yeah, So it's it's been helpful for

(01:09:18):
her to talk to a counselor.Yeah, And so we don't we don't
doubt that there's a reason for that, and we think that that's going to
help her in the future. Butwe also have seen like for the last
year, she won't sleep with anybodyelse. She has to even stay in
our bedroom with us. We haveher like on a little cot because she
won't stay in her own room.So I've been told that's common with like

(01:09:42):
medically fragile kids, the siblings areaffective in that way. But that's definitely
like the whole mental health thing isis huge all around. It's affected all
of us, yea to where weh a few weeks ago, Adeland had
a little sniffle and Kat was like, Jeff, Adlans get a little sniffle.

(01:10:04):
I think we need to, youknow, suction. And Autumn was
in the other room and she camein and she goes, you're not going
back to the hospital, are youall? And I said, no,
honey, no, We're gonna dothe suction. It's gonna be fun.
And then Kat looked at me likeman like. Autumn was in the other
room and she heard the possibility ofgoing back to the hospital and just like
sent her full PTSD type exactly,and it was it was struggle. The

(01:10:30):
hardest point that I had was whenAdeline was in the hospital for three months.
My dad was in hospice that wholetime. He was put in hospice
right before she was hospitalized. SoI was going back and forth. But
we were going back and forth betweenAdeline and Delonaga, which is like an
hour north up from the hospital too, and you know, making sure that

(01:10:51):
Autumn is doing well and dance andher activities, and so it was really
difficult. And then my dad passedaway on April's second right, and so
she was discharged on April thirteenth.So the funeral was the next weekend,
on April the ninth, and soshe was discharged a few days later.
Well, it didn't really I didn'treally hit rock bottom until I got home

(01:11:15):
because I was still focused on takingcare of her and advocating for her because
she wasn't being treated right by someof the people there, and so I
was still advocating. And so whenI got home and I was here,
that's when it like it all allthe way. Yeah, So my mental
health the worst, Like I washaving to be strong for her in the

(01:11:36):
hospital. But then when I camehome, that's when I was like,
that's when I kind of fell apart. So it took me some time to
recover. And our marriage, Imean, it hurt our marriage. I
mean, you know, because wewere we were not we were basically living
apart from each other for three months, like we would literally be passing each
other on the interstate on the phone, I love you. We would have

(01:11:58):
to switch places because one of uswould have to eat her from school.
Yeah, and then one of usneeded to be with Adeline well. And
in the midst of all this Julyof last year, I stopped the IT
work and was able to go onstaff here at our church just a mile
from here as a student pastor,because that's my heart and my passion.

(01:12:23):
But I didn't think I could doit again because of her and what was
going on and things and we didn'tknow the future and mental abilities and such.
And I hit some burnout when Iwas in South Carolina, so we
had a lot of things going onthere, and so it was a blessing
to be able to step into thatrole because she kept going to the hospital

(01:12:46):
and I was able to take mylaptop and work at the hospital and still
get done what I needed to do, whereas with the I I'd have to
be like in somebody's office, youknow, working and like remote sessions and
such. And it was a blessingto where I could be, you know,
doing what I needed to do,keeping up with my job, you
know, but I was salary towhere I didn't clock, I didn't have

(01:13:09):
to have the clock in. Icould be there with her. Gave you
the opportunity for presents while still beingable to do what you need to do
for work exactly. And so Iwas still able to teach. I was
still able to do everything I neededto do. But you know, but
so two nights I would spend atthe hospital and then Kat would spend the
other five And so that's kind ofhow we kind of ye and that's that's

(01:13:32):
not a sustainable model marriage for parenting, for any of those things. It's
eating, yeah right. And theyand they were like, oh, you
could go home, and I'm like, well yes, but there are so
many things that I saw that werelike, I'm not like a micromanager,
but they weren't doing things, yeahright. And they weren't giving her,

(01:13:55):
they weren't doing and know your childbest, yeah right, yeah, trust
that guy intuition. I feel likeit can definitely be intimidating when you have
medical doctors that I've gone to schooltelling you, no, she doesn't need
this certain surgery or it's good youcan go home. But there's something inside

(01:14:15):
of you that wants you want tostay there with her, and there's always
a reason why. Sure exactly.That's a good point and a piggyback on
that. It's a great point becauseone of our strongest advocacy if that's a
word advocating thing statement is we wantto change the textbooks because the textbooks say

(01:14:41):
trust me eighteen incompatible with life.Well, we want to say trust me
eighteen compatible with life upon intervention,like like I mean, and we've got
like several universities are sending us thesepackets in the mail and we fill out
these survey because they're like, youhave trust mean teen baby still alive after

(01:15:02):
the first year. We want tohave some data, right because nobody's we
don't have this, yeah, Andwe're like, well, really, like
she her surgery went well, Likeshe's feeding, like she's she's doing her
normal thing. And it's really becausewe decided to do the intervention, to
do the therapy, to do theingy tube, to go to the gtube,
to we did our you know,and and then some doctors or nurses

(01:15:27):
there would be like, oh,trust me eighteen. We know, we
all know what that means. It'slike we don't really need to care for
her like everybody else. And it'slike, no, we want to change
the textbooks to say that. Andwhat really started me on that was the
geneticist in Charleston. He was likinghis sixties. He was an old geezer.
It was hilarious. He was sofunny. He was like cracking jokes

(01:15:49):
the whole time. He was hangingout with us, and and he like
went over to Adeline and he's like, see this right here, see her
hand, See how it's clinched likethat. He's like, well, she
hers is not because we did thebraces and so they were able to Yeah,
they were at birth. And sohe's like, that's what happened.
I'd go in the nicku and I'dsee that hand and I'd be like quit
the bottles like he would like.That was how he recognized it. And

(01:16:13):
so he's like, think about becausethey weren't swallowing, right. Yeah,
he was like, what's going onwith this baby? And he's like,
this has got tried. Like hecould see the clinched fist and know exactly.
He's like, we didn't have bloodtests back then in the sixties.
Yeah, so he said what thedown syndrome, which is tries to me
twenty one. What down syndrome waslike back in the fifties. It was
like this, just take him homeand figure it out. He's like,

(01:16:38):
that's kind of tries to me eighteentoday. And so he said, as
we do intervention, as we dothings, as we realize data can be
collected, they can thrive. Theycan you know, get nutrients through the
G two. They can you know, have the heart surgery and recover.
They can go through all these thingsand live upon intervention. And so the

(01:17:02):
reason why it was incompatible with lifeis because people would give birth and they
would go home and then they woulddie literally late hours later because there was
no there was no intervention or theywere only all for comfort care. And
now there's trajectory for positive momentum becausethere's cases like this where you can find
the right team yes that will helpyou prepare for all the scenarios, give

(01:17:23):
you the tools, and then actuallytake the chance on procedures that can be
life changing. So there's doctors atCHOA who are not tries me friendly.
They're just like sorry, band,And there's others who were like I'd like
to yeah, let's let's try,you know, let's just say, hey,
why not, let's do it.And so we just say we want
try some eighteen babies to be treatedjust like any other kid, except with

(01:17:46):
a few like a few caveats,like they need to be able to breathe,
you know, they need to beable to eat. They needn't you
know, some need like the herniasurgery and stuff like all for them,
the intervention and then see let himrecover, you know, like let him,
let him fight, let them befeisty, let him. And so
that's kind of what we try tosay, is like we want to change

(01:18:08):
the textbooks to say you can likeand he was like, he's right,
like you know, so let's sayfifty years from now, there's try some
eighteen babies. Who are you know, able to you know, like the
down syndrome kids. Now, wehave friends, many friends that we have
this one awesome girl at church.I see her all the time. I

(01:18:28):
talked to her. You know,she loves like when we do VBS,
she'll get up on the stage anddo the motions and stuff like she's awesome.
And it's because you know, likeher parents, it was intervention.
Yeah. Yeah, So down syndromewas done a death sentence. It was
like in the fifties. Yeah,so that's kind of like one of our
they're like retiring, like they're gettingto the age of retirement. So that's

(01:18:49):
one kind of like we try tosay, as we have opportunities like this
or opportunities to talk to other peopleor such, we try to get them
to understand like it's changed the textbook. Yeah. Yeah, And I always
my phrase, my go to phrasefor people when I talk to them and
advocate for them, as I alwaystell them, I said, it's better

(01:19:09):
to grieve than to regret, Likeit's I mean, because we have loved
her, and the longer we're withher, we love her, you know,
more and more. But I wouldmuch rather grieve a loss of someone
that I cared for deeply than regretnot giving her a chance. Yeah.
Well, I appreciate you guys sharingso honestly, especially on the mental health

(01:19:31):
element, that that's the real rawlife of a family with the child or
rare medical journey, and you guyshave given us a beautiful picture of that.
And for those listening, you didn'tget to see Adeline just wake up
from a excellent nap and Dad's armsand just stretch real big and share the
biggest smile. And to think thatthe world almost doesn't get a chance to

(01:19:56):
enjoy that light is would be heartbreaking. And so it is so cool that
you guys have advocated so well forher, and that obviously her built in
fierceness and drive has not only givenher joy, but has brought joy to
you guys and so many others.And so we are really grateful that you've

(01:20:17):
given us the chance to experience thatand to share her story with the world.
And so thank you. And we'rereally looking forward to shouting shouting love
for her and your family on noFall. So thank you, guys,
Thank you, so I appreciate it. Thank you, and go shout love.
We do amazing things for amazing familieswith kids on rare medical journeys.

(01:20:41):
Each month we shout love for familiesthrough the sale of creative apparel inspired by
the kids. This month's Bravery KnowsNo Size design is inspired by Adeline,
a feisty and tenacious girl from Dawsonville, Georgia, who maintains a joyful spirit
while facing each day with bravery.Every purchase in September will go towards the
cost of a screened in back porchthat will allow Adeline time outside, something

(01:21:06):
that is not currently possible because ofher extreme sensitivity to light. Visit our
website at goshout dot lov to supportAdeline through the purchase of a T shirt,
hat, tank top, hoodie,or other items.