August 8, 2023 • 46 mins
Say high to Caroline👋Caroline is a happy and curious two year old girl from Peachtree City, GA who loves music, Bluey and staying busy!Throughout the month of August we’ll be shouting love for Caroline to help raise awareness for her rare medical journey with Hypoxic Ischemic Encephalopathy, Cerebral Palsy and Dystonia.
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Episode Transcript
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(00:01):
Give it a one word description ofeach of your kids, like their person
Daddy, you're going to do ittoo, Okay, so we're gonna put
you on the spot. Probably similarto bit Liam goodness, he's very focused,
I would say focused. Charlotte's fun. She loves to flip around and
(00:25):
just have fun. She always hasa smile on her face. Caroline is
curious. That's a good word.She likes to explore everything. Don I'm
gonna shift it a little bit.What are a couple of things that each
of your kids love to do?Leam loves to play baseball. That's his
(00:48):
favorite thing by far, is toplay baseball. Charlotte is as far as
activities, she's really gotten into tumblinghere recently. But she also likes to
draw as very artistic. It's reallygood at it actually. And then Caroline
just likes to move to be aroundother people. She loves to interact with
(01:10):
other people. She's a very happybaby, you know. Fortunately we're thankful
for that. Like she's very easygoing and happy. This month, we
are introducing you to a little girlwho is happy, determined, and without
a doubt curious. Everyone, MeetCaroline. My name is Seth Carnell and
(01:32):
this is the ghost Shot Love podcast. Today we are in Peachtree City,
Georgia, and are sitting down withCaroline's parents, Caitlin and Jeff, who
are ready to tell you all aboutCaroline. I occasionally try and pronounce the
diagnosis of our future child, buttoday, after a few attempts, I'm
(01:53):
just going to pass it along toCaitlin and Jeff, who will not only
say it correctly, but we'll tellyou all about what it means for Caroline's
medical journey and her daily life.I can, however, pronounce the name
of caroline siblings. She has abrother named Liam and a sister named Charlotte,
both of whom adore and care forCaroline in a way that will definitely
(02:15):
warm your heart. This is alwaysa favorite of ours, hearing about how
siblings of kids on rare medical journeysare stepping up and teaching us all about
inclusion and unconditional love. Leading thisconversation is Josh Veitch, our executive director
of Go Shout Love, and JessicaSanto, our family relations director and talented
(02:37):
photographer. Caroline Story is nothing shortof deserving. She is an extraordinary girl,
so please help us shout love forher by sharing this podcast on whatever
platform you're listening on or social media, just help us tell her story.
So you kind of have an interestingstory with Caroline besides her complexities that you
(03:00):
had her during the COVID year.Yes, so going into her journey,
did you know anything was going onwhen you were pregnant with Careley? No,
everything was normal. I had hypoomesis. That was the only thing that
was abnormal. But she was growing. She was always in like the ninety
(03:20):
to ninety fifth percentile. She wasbig and happy and everything seemed fine until
thirty six weeks to the day.I didn't feel her moving and I told
Jeff in the morning, I said, you know, I just don't feel
like she's moving, and we wereboth kind of like, well, she's
getting bigger, she's running out ofroom. This is also your third baby,
(03:44):
so you kind of know not toget too overthinking about it. Because
it was COVID. The older twokids were doing virtual school at home,
so I was trying to bounce fromcomputer to computer to help them throughout the
day with their work. And oncethey were done with school, they were
doing Kuman at the time, andI took them up there and I was
(04:04):
just sitting there. I was like, just give me a sign if I
need to go to the hospital.I just don't feel this baby moving.
So I stopped at Chick fil A, got a large coke and lemonade,
drank those didn't feel her moving,made dinner and I told Jeff. I
was like, I think we neededto call the doctor. But if we
(04:24):
call, like they're gonna make uscome up. And I delivered up in
Atlanta, so he said that's fine. So sure enough, they said come
on in, and thinking it wasgonna be nothing, they were gonna send
us home. He brought the dog, the two big kids. I had
to go in by myself because itwas COVID, and even the nurse was
(04:46):
like, oh, decreased feetle movement, the baby's got a heart rate.
It's fine. And the resident camein and she was gonna do a bedside
ultrasound and she just said, Ihave a feeling I want a full ultrasound,
so I'm gonna send you down.So she sent me down for a
full ultrasound. And she just didthat because of a feeling like there wasn't
anything that she saw that just nope. She was like, she has a
(05:06):
steady heart, right, there's novariability to it. But she's like,
I just have this feeling that weneed a full ultrasound. So she sent
me down and the girl who wasdoing the SANO I could tell she was
new, and somebody popped their headin and said, hey, I'm leaving.
Do you need anything before I go? And she's like, yeah,
I can't get this baby to wakeup. Can you see if you can
(05:27):
get her to wake up? Andturns out so when she said that,
were you like, okay, soundscorrect. I had a feeling once she
started and I didn't see her movingon ultrasound that something was up. And
then the girl that stepped in thesecond SANO tech kind of looked over at
her with a stern look and Isaid, I was innick, you,
(05:50):
nurse, I know that, lookwhat's going on? And she said,
well, I just I see thatthe court is wrapped around herneck twice.
I can't tell you if you're goingto have this baby right now, but
I can tell you you're not goinghome. So at that point, Jeff
had already started to drive back downto meet a friend halfway to get rid
(06:11):
of the kids. And the dog. You say, we'd like to quickly
because we were an hour away,our friends or family doesn't live anywhere nearby
the or knowing a way, solike we didn't have a necessary a family
member that could take them off herhands. But fortunately we had a lot
of good friends and have a lotof good friends here that are more than
(06:31):
I want to help us more ina buying. So that's kind of what
happened there. So I got backup to my room and the nurse was
in there waiting, and she said, I can't tell you're having this baby
right now, but I'm prepping youfor an emergency c section. And she
said that. The resident came runningin the room with papers and she said,
(06:53):
your baby will not survive if weinduce you. We don't know if
she will survive if we do anemergency c s So we're trying to do
everything as fast as we can tokeep you awake. Is there anyone who
can be with you? And Isaid, my husband is on his way.
She said, we will let securityknow tell him to just park and
(07:14):
run. He will not get stoppedbecause at that point there were two COVID
checkpoints. They said they know he'scoming, tell him to run, And
what's going through your mind at thatmoment? Are you thinking about what's going
through your mind? I'm sure everything. I was trying not to panic.
I was trying. I actually Itried to call him, but he's like,
(07:35):
I have the kids in the car. I said. All I said
was hurry, and I hung upthe phone and I called my sister and
she was trying to just talk tome about nothing. Neither one of us
had words, neither one. Idon't even neither one of us remember the
conversation, but she was just tryingto distract me. And then he walked
(07:56):
in the room and they said,okay, it's time. The fastest way.
We don't have a journey to getyou down there, can you walk?
So I had to walk down tothe O R. And halfway down
the hall they said we didn't doa COVID test, so they swabbed me
for COVID in the hallway, whichat that point didn't get your I think
(08:20):
people were just no one knew whatthey were doing in that's a weird moment
in time. So what was goingthrough your mind trying to get back to
the hospital, because that's no pressure. The day starts in as completely normal,
yeah, and then you go,you think you're going to an appointment,
that's just going to be a quickthing. Yeah, and then all
(08:41):
of a sudden, everything's changed ina matter of minutes. So what's it
like to get that call? Yeah? I mean, I honestly didn't know
really what was going on, becauseI was just trying to keep the other
kids calm and the dog and hurryup and get back. Yeah, go
ahead. But I knew, likeI knew Caitlin. I know Kitlin well
(09:01):
enough to know that like when sheI could just hear it in her voice,
like something was up, and Ididn't know what really, and but
I just all I could think aboutwas getting the kids to our friend and
like meet her friend, you know, and drop them off as fast as
I can and just hurry back tothe hospital. And it was probably about,
you know, a twenty thirty minutedrive from where I was to our
(09:24):
friend to meet our friend and thenback again. So I just I was
going as fast as I can Ican. The only thing I can remember,
honestly is like getting up there likesome it and reasoned not in the
greatest place, and like as faras there's a lot of homeless people that
around there, and this guy hadjumped out in front of the car I
was. I was on the wayback to the hospital, and I was
(09:46):
just frazzled, and I was likeI had to get around him, and
it was like I had just thelast thing I need right now, is
like just I was trying to getto the hospital and I walked in.
I just really wasn't thinking anything about, like other than being there and getting
to where Caitlyn wasn't seeing what wasgoing on, But I was trying to
(10:07):
focus on that at the moment,like just just getting in there and not
really trying to think too much aboutwhat happened or what was going on.
Getting rushed to the O. R. Jeff gets in, They paused you
to take a COVID test. What'sthe next thing that happens. They prepped
me for the C section. Hecame in and she was born. Within
(10:31):
a matter of minutes. She cameout and she was not crying. I
heard them say there was maconium inher fluid, which I panicked because I
was a nick nurse and I worriedthat she had aspirated. She started breathing
with just minimal stimulation. But shenever cried. She never made any noise
(10:54):
for the first twenty eight days ofher life. And they took her to
the nick and they said, shejust needs a little bit of oxygen,
but she's doing great. You know, We're just gonna take her to Observer.
So we thought, okay, andI just had this feeling after the
first time we saw her, Isaid, I told Jeff, I said,
something's not right, and they didn'twant me to go see her.
(11:18):
And I was like, you cannotkeep me from my baby. And they
were like, well, you haveto be able to transfer from the bed
to a wheelchair before you can godown, and so she were like,
oh boy, You're like she's gonnado it. She was born just after
eleven PM, and they said,well, you can go down at two
or three am if you can transferinto a wheelchair. And so Jeff just
(11:41):
knew to set an alarm because heknew, no matter what, I was
going to go down to the neck. And the nurse didn't come in,
so he went out and got awheelchair and she was like, are you
this is you should not be goingand Jeff just said, just let her
and so we went down and shewas calm. At that point, did
(12:05):
I have to did you have tomentally prepare yourself as a nick you nurse?
Because you how do you go intothe nick you with your child in
there having been a nick you nurseprior? At first, I didn't really
have any real expectations. I justwanted to be with her. As the
days went on, I wasn't Iwas getting very particular about certain things.
(12:28):
I didn't like the way they wereswaddling, like she wasn't swaddled. They
weren't doing things developmentally appropriately that Iwas used to doing. They I think
they just didn't really know how totreat her as days went on, because
she didn't fit the typical nick youmold. You think nick you usually think
(12:50):
pretty, and they have a certaincourse that they do, whereas when you
have a child with hie, it'sa totally different ballgame. It We didn't
really talk about this, but itwas interesting, like we we purposely delivered
up in Atlanta because Caitlin wasn't nickynurse and something told her that like she
wanted to deliver at a hospital,it had a like a higher level of
(13:13):
nick you care than like would havebeen locally here. So that's why we
drove an hour, you know,to deliver up there. So like,
had she not chosen to do thatand we delivered here, I don't honestly
think that the I'll come with itthen even the same you know as what
the Sano tech that said, youknow, there's a chord wrapped around her
neck. She actually lives very closeto us and she just works up there
once every couple of months. Wow. And she said, you don't know
(13:37):
how lucky you are that you're uphere and not town where you live,
just because they don't have the capabilitiesto discover that as quickly and then be
able to react as quickly. Ithink so. And they don't have residents,
they don't have doctors there. Emoryhas doctors. They're twenty four seven,
they're obies, take shifts, they'rethere for twelve hours no matter what.
(14:00):
But yeah, so I want toI want to circle back eventually to
talk a little bit more about herdiagnosis. But I so at this point,
you're delivering in a hospital that youdidn't deliver your other two at out
of a gut instinct. You goto have her sonogram because of a gut
instinct of her not moving. Sowhat does that tell you about trusting that
(14:22):
instinct and when what advice do yougive to moms as to win to trust
that or when to when not tobecause a lot of the times as moms
were told everything's fine, everything's fine, and most of the time it is
how do you differentiate that gut feelingof we need to go now, we
need to do this? For sure, for me, it was just a
(14:43):
feeling that would not go away.With the other two kids, there were
times where I went in to thedoctor because I had a concern and they're
like, nope, it's fine,everything's fine, and that was it.
Concerned went away. I didn't,you know, once I was reassured.
But this was just like a naggingfeeling. So like if it if you
have a feeling that just won't goaway, go in and get checked.
(15:07):
It's usually a reason. There's areason they call it a mother's instinct.
And Jeff, as a you strikeme as a really like calm, reasonable,
analytical kind of thinker, is thatyeastly? I think yeah, I
think that preaby hits the snail onthe head. So as that in a
(15:28):
supporting role, as a husband,how do you handle that side of things
of being supportive and yet encouraging whilealso like it was Jess was saying,
sometimes it is nothing and kind oftrying to rationally walk through like these tough
decisions. How do you find yourrole in that? I think I just
have learned over the years, likeyou know, to trust her, like
(15:48):
her instinct and like what she needs. Like and even like I said,
she was in the hospital that wedid, like I know, if she
was always kind of like, hey, you know, people are gonna think
are crazy for wanting to go uphere to learn, and I said,
it doesn't matter, like you know, it is what you want, and
like I'm I support it because Itrust. I mean, I trust she
was a great NICKI need nurse.I know she doesn't sometimes like doesn't believe
(16:08):
me when I say that, butlike I trust what she says, and
like you know, so I youknow, I just you know, that's
the best I can do, isto support her, even though I trying
to think too much about things anymore, like they do in the details,
I guess of what's going on.Sorry, cramping my leg here. So
(16:32):
it spoken like a wise a wisehusband that has just learned to go and
do what the wife says. Yeah. Yeah, I think over the years
and like through the experience on Slive, I know, people a lot of
people say, like, you seemso calm, Like I think I just
kind of have to be out oflike I can't, Like, yeah,
you can't, you can't. There'sso many things that could trust you out
(16:56):
though, Like if you're not,then like it takes your toll on me,
so like I try to. I'vejust kind of become more and more
calm, honestly over time just becauseI have to be, which is I'm
not. There's nothing wrong with that. Just in the families that we've talked
to, everyone kind of has adifferent take on stress and dealing with the
complexities and all the unknowns, whetherit's the day to day stuff that has
(17:21):
to get done, or it's theunknowns or the future and all these different
things, which all those things arereal life for everybody. But obviously in
your situation with you know, achild in a complex situation, I'm sure
it's even more magnified. Have youguys found ways to like communicate or work
(17:44):
through that individually or as a couple, or any advice that you might have
for individuals or couples going through somethingsimilar. Yeah, I mean I think
we pretty pretty good Rabbi communication,Like we talked reblily, like do issues
that you know, we are goingthrough whatever at And I think the one
thing I would encourage people to do, And I think especially for dads,
like I think there's some groups thatI've joined since of this that I think
(18:08):
just tend to have a feeling likeI can't ask for help or I can't
h you know, there's something can'tbe wrong with me. So like I
think guys tended our father's tend tonot to like want to reach out for
help even though I needed. Ididn't wind up teaking out to have therapy,
But like I definitely would encourage peopleif they need it, to go
(18:29):
do it. Caitlin, at onepoint in time she was you know,
went to see a therapist because dealingwith all the emotions of everything, and
you know, she had a lotof feelings of guilt even though there's nothing
that she did that cause and allthat stuff and a lot of I think
other parents and moms especially carry thatstuff. And so I just encouraged people
to get help if they need itand don't be don't feel bad about needing
(18:51):
help, Like, yeah, canyou can you talk a little bit more
about the groups that you've found,because we we we hear that a lot
from moms that there's a lot ofespecially Facebook groups, but there have not
been as many resources available or atleast that we've come across that Dad's been
able to connect with the should be. Yeah, there are some like basically
even the main HIE group that webelong to, there's a subgroup that's for
(19:12):
days, but there's very little trafficon it. Obviously, I probably feel
like I'm crazy. I probably commentand done a lot of other groups and
like talk with a lot of timesit is moms that I'm I'm communicating with
or talking to, so it's alittle bit different, but I don't doesn't
bother me at all. But Imean, I think just there are groups
out there, but there tend notto be very much a lot of activity
(19:34):
or you know, every once ina while, there'll be a like on
an HIE group, there'll be anew dad would join the group and say,
hey, I'm dealing with this,I need and everybody usually jumps in.
Is encouraging and like Hey, youknow, reach out anytime you need
to. But it's not like theconstant ongoing chatter or anything going on there.
And there's just I wish it wouldbe for you guys. Yeah,
you guys deal with so much pressureand so much just like I said,
(19:57):
pressure to make sure everyone is takencare of. Yeah, there's a couple
of families, we get to knowthem, like I know, there's one
in particular that I think the wifeit's at her husband's striving a line I
offered, you know several times,like am wanting to listen if anything else,
Like I don't know yet obviously don'tknow them personally or whatever, but
(20:17):
I never did reach out. ButI think it's just harder. Like I
think there's this mentality that like youcan't have you can't ask for help,
or that you have to deal withit on your own. I'm supposed to
already have all the answers. Yeah. Yeah, So for me, I
just talking with Klein and you know, and just I always joke when I
go to whatever it is, ifI you know, even any employment I
(20:40):
have, sometimes I just I talk. I'm pretty quiet, but I tend
to talk, like I think that'smy therapy, Like it's just even it's
not schedule therapy, but people Iget to know people in the line sometimes
like it just all comes out andthat's my therapy that guys. But yeah,
I think we're finding more and morethat we have these conversations with families
and sometimes the guys take a littlebit longer to crack open, but when
(21:03):
they do, they have the mostamazing things to say. So if we
could just keep this going where youknow, dads are talking more and people
are realizing that dads have a lotto say and they need to say a
lot because they need to get itoff. Hopefully we can help kind of
destigmatize that a little bit. Andlike at work, sometimes it's hard,
it's hard for him to relate topeople because people get so wrapped up in
(21:26):
these issues and it's like this isthis is nothing like what we deal with
at home. Is So, likehe did find a group at work that
they do some they're trying to starta group to work with people with disabilities
and become more accessible in their company. So he's trying to see if that's
an avenue of something that he couldgo about to help we get back.
(21:52):
There's it's been great, like justthe connections you make through this whole experience.
But there's a family that we knowfrom back at home that they so
we're going seeing company I do,and just we don't talk regularly, but
like just even that they've the scheduleda couple of calls, you know,
or I talked with them. It'sjust about things we're doing, from insurance
issues or just whatever. Like they'rethere for you know that those people are
(22:17):
there for you. I think it'sit's been good. I've been trying to
It's hard. I think the biggestthing I think for me at work is
it's just like it's having people likeunderstand or relate to you, like what
what's going on? Like it's justa how can you? How can people
get better about doing that? Whatwould be some things that they could do
(22:37):
that would help. I don't know, it's a tough thing because like I
think, like unless you're like ina situation where you have a child that
has special needs or something that's verydifficult to relate to you, and I
think I think people mean well andlike they're don't I would definitely would not
say people are not supportive at work, but like they're it's just a hard
thing to relate to, you,Like, and when we meet families that
(22:59):
have kids with not necessarily the samething, but maybe a different medical need,
like they just kind of get it, like and it's because they live
at day to day so it's Idon't know, it's a I think the
biggest thing people can do is justbe like understanding and open to I guess
everybody's got things going on, Like, it's not just us with medical there's
(23:22):
there's you know, a million thingspeople have gone on in their personal lives,
So it's not just this, butpeople being more like understanding empathetic.
Yeah, I think people are gettingto be more that way, especially like
during the COVID situation. I thinkthat's brought a lot of that out.
You get to know people more personally. I think working from home and like
seeing people's family life like more realtime and like meetings and stuff like that
(23:42):
is kind of brought some of thatout. So well, it seems like
Caroline's already kind of paving the wayfor you in that regard in work and
inclusion. What about her siblings?What has Carolyne taught each of those too?
Because they love her a lot.You can tell that they do.
Her brother has definitely changed a lot. He has become very protective of her.
(24:06):
He very much worries about her andhow people will treat her. How
do you handle that as a motherseeing your son worry for your daughter.
We've tried talking to him. Hedoesn't like to talk about his feelings.
We've tried having him talk to otherpeople. He doesn't love that either.
(24:32):
We found that sports are a goodoutlet for him. So once, but
baseball was over in the fall,he went to basketball. But he's really
picked up on other kids in schoolaround him, if they're getting picked on,
or if he notices somebody that has, you know, maybe a settled
(24:53):
disability and doesn't get picked for teams. He notices that and he tried to
He doesn't try to be overly,Oh no, I'm picking you first,
but he recognizes that. He doesn'tlet those kids get picked last. He
will help those kids in class toget the right answers to when they're working
(25:15):
in a group. You know,he'll say hi to kids that he knows
that gets picked on, just sothat they know that there's somebody there.
Even if he's not great friends withthem. He tries to just say hi,
and he just tries to be niceto everybody, And I think that's
(25:37):
really come He's always been a sweetkid, but I think he's just recognized
that his sister is going to havesome challenges growing up, and he doesn't
want to treat anyone negatively because hedoesn't want anyone to treat his sister that
way. Charlotte's been kind of quietand reserved. She's recently come out of
her shell, and she's very detectiveand she's willing to tell Annie One and
(26:02):
everyone about her sister's gtube and herAFOs and no, she doesn't walk,
but watch out what she's going totell you on her eye gays. So
she just tries to kind of includeher sister in on everything. When we're
at baseball games, she'll go runaround and play and then she'll come back
(26:22):
and be like, Okay, wellCaroline, can Caroline come with me?
So she'll take her in the strollerand run around and play with the other
kids. And then it's taught otherkids around her that she's not scary.
She's just like you. Just becauseshe can't talk, she can still tell
you what she wants. Kids they'rethe best teachers in her cards to that.
Yeah. I mean we've had kidscome up and be like, what's
(26:44):
that when we're giving her water somethingin her gtube? So we tell them.
Sometimes they'll say, oh, canI see sure? And then you
know, the parents are like,get back here. Don't ask questions.
What are you doing? You like, what's your advice about that? Let
kids be kids, kids are curious, Let them out questions. What if
what if the child asks something wherethe parents like, oh my gosh,
I can't read you ask that?Or are they you know, we would
(27:07):
just tell the parents, you know, it's totally fine. Yeah, we
don't mind at all. This ishow kids learned. This is how the
world gets to be more inclusive.This is how people become more empathetic and
understanding if they can see other kidsdoing something that's different. You know,
we always just say, she doesn'tdrink water by her mouth, so it
(27:27):
just goes straight into a tube anddo her tummy, you know. And
most kids are like, well,I like to drink from a straw,
And we're like, yeah, isn'tit so cool that you get to drink
from a straw? And hers justshe doesn't even have to work for it.
It just goes straight into our jummy. I think the biggest thing is
is like don't for parents and adults, like don't worry about saying the wrong
thing, like because I think theytend to act the other way, like
(27:48):
don't like just to stay away.And like I can remember this one time
we met a lady at a momat the a lake near our house.
We can take the colf cart there, but the we met her and her
son had a feeding tube. Carolynwas on the continuous feed at that time,
so we had the pump and everythingwith us, and she saw that
and she's like just started a conversationabout it and whatever. And I can't
(28:10):
remember, honestly, like what allthe her son had had. I think
we had CP as well, butshe we just talked to her for a
while and like we were learning andasking questions, and she she you could
tell us she was so relieved.And nobody ever stops and talks to me
when I'm with my she had onekid. She nobody ever stops and talks
to me because they're afraid to likesay the wrong thing. Like she's like,
she was so happy just to talkto somebody, and I think we're
(28:34):
fortunate because we do have other kids, and like they, we do have
like they have friends through that group. Like if you're a single or you
have one kid that has a disabilityor special need, I think it's even
harder because like you just lovely peopledon't I don't think intended to exclude you.
It just happens because like it,you know, they can't do the
same things. They can't run aroundwith the other kids and or whatever that
(28:55):
you know, there's always something thatkind of limits them in some way,
and that like you just come ofstuff getting included on things that we are
fortunate because we have the other kidsthat we kind of still have those activities
and things we get pulled into.But I would say in terms of like
adults too, we've noticed that wedon't get invited to things people. We
still have friends, but you know, we have one set of friends who
(29:19):
are great, and they always askus, hey, we're we have a
babysitter, were born out, Canyou guys come nine times out of town?
We say no, they still keepasking, And just because we can't
go, it doesn't mean that wedon't want to be included, you know,
it means the world to us whensomeone asks us if we can do
(29:41):
something, even if we know we'renot going to be able to And even
though this couple knows that we're notgoing to be able to do, they
still ask and the invite still matters. Yes. Yeah, And that's the
thing is like, and I getit too, because like there's so many
times we we don't we can't gobecause you know, we've got she's got
(30:03):
to go to better, we've gotto take care of her. We're trying
to do therapy with her when wecan any free time we haven't. It
just it's just it's hard to go. Le's to say yes, and like
so you kind of get a situationwhere it's not like you don't want to,
but like that's more important right nowis looking after Carolina, making sure
she's getting everything she needs. Sodon't be offendedive we say no. Yeah,
(30:26):
Let's talk a little bit about thosetherapies just for a minute, because
Gosha loves helpefully helping for that tohappen a little bit more for you guys.
So, she's been in therapy,intense therapies since she was how long
she started when she was seven daysold, and she started intensive therapy,
and the nick you she was gettingtherapy five days a week, she would
(30:48):
get PT twice a week, OHTthree times a week, and then speech
five days a week. So speechfor her at that point was feeding therapy.
They were trying to teach her howto suck when she was born.
She did not suck, follow orhave a gag reflex. So, and
this, I guess we didn't reallycover the medical complexity so that she does
(31:08):
have going on, so really quickly, how do we how do we describe
her diagnosis if you can? Yep. So Caroline was diagnosed with HIE,
which is hypoxic a schemic encephalopathy.That means that she did not have blood
and oxygen flowing to her brain priorto birth because her cord was wrapped around
(31:29):
her neck twice, she had atrue knot in her cord, and her
cord was wired or hypercoiled, sothey said it looked like an old fashioned
telephone cord. So all those thingswere kind of the perfect storm to lead
to her not getting adequate blood andoxygen. And when your body doesn't get
blood and oxygen, the first placethat shuts off too is your brain,
(31:49):
so we learned when she was abouttwelve hours old, they let me give
her a bottle and we quickly learnedthat she could not swallow properly. Her
vitals changed. She dropped from beinglike one hundred percent oxygen down to forty.
Heart rate dropped, and they hadto kind of bring her back from
there. They thought she was havingseizures, so they started an EG.
(32:15):
She did not have seizures, whichled them to an MRI where she got
the HIE diagnosis. From there.When she was one, she was diagnosed
with cerebral palsy and dystonia in herarms. So the dystonia is she can't
control her arm movements. It's justkind of a twisting and turning of her
muscles. It can be very painful. Hers has gotten better a lot better
(32:38):
with therapy, but that's her bigdiagnosis. And then actually just a week
ago, she had her first seizure. A lot of kids with HIE are
prone to epilepsy and having seizures.For her, we don't know what this
means. Since it was the firstone. We don't know if it was
related to illness. We don't knowif this is epilepsy coming out we're kind
(33:00):
of an awake and see on thatyou just describe that all very well.
So these on the diagnosis you saidthat she was in an MRI. Is
that you said, yes? Andhow is it the amount of blood flow
(33:20):
still to the brain is that howthey're able to tell or how does the
n maria help diagnose that? Soshe has damage. They can very clearly
see that part of her brain isdamage. There's two areas for her.
It's the foulmus on both sides andthe cortical spinal tracks. So the way
she was presenting when she was inthe NICKU when she was six days old,
(33:44):
they sat us down and said theydidn't think she would ever move anything
below the neck based on where herdamage was, that she would not be
able to see or hear. That'skind of where we started. And then
they said, your best hope isto try intensive therapy. Yeah, And
so we started the next day.Yeah, and she's been doing that NonStop
since then. Yes, she didnot respond to painful stimuli, she did
(34:07):
not respond to touch, and wewould sit there and the occupational therapist had
us just run our finger up herarm. Nothing ever happened, And then
one day she brought her arm up, bent her elbow, and that was
what they wanted to happen. AndI'm I'm guessing that had to feel like
seeing your kid ride their bike.Like the amount of like pride and joy
(34:30):
and like like all this work thatshe's been putting in, Yeah make you
pretty proud, mama. Yes,Yeah, it's just encouraging. And like
the you know, the group,the HIA group is the big thing is
like there is hope, you know, hope for HI and likely that's the
biggest thing. And the whole thingis like no matter what the doctors tell
you, and a lot of timethat's they don't know. So they tell
(34:52):
you that you're looking at the brainand MARII and they're telling you that these
are the facts, like there's damagehere and here, but they don't know
two kids will be the saying likeyou could have the same damaged areas and
they could have totally different outcomes.So like they can ever tell you.
So like the biggest thing is justto not give up on the fact that
like something you know they can do. You know, neuroplasticity is like a
(35:13):
huge thing with with kids that havebrain damage, and like, you know,
only they can show us like whatthey're capable of, and you just
got to give them whatever you cantools and therapies to help them, you
know, retrain their their brain torewire it, if you want to think
of it that way, to toto be able to communicate. Because the
biggest thing with all this is justthe the damage to their brain. Like
(35:34):
your brain controls everything, and likethat's that's what happens, is that you
know, there's those damages, youknow, affect different things for different kids,
and different even like I said,same same areas affected different two different
kids would have different you know results, you know. So it's what are
some of the major things that she'sworking on now. Sitting is our biggest
(35:54):
goal right now. She's getting alot stronger, her body has calmed down
quite a bit. She used tojust throw herself back all the time.
Now she well kind of sit withvery minimal support. She did sit for
five seconds by herself. Yeah,it's very like a baby steps Like it's
(36:15):
it's real slow, Like can youguys try not to cheer two out second?
So do intensive therapies help with that? Yes, So we just did
a five day intensive therapy down inFlorida, and she we were hoping that
(36:37):
she would get stronger with sitting withit her she decided she was going to
start eating by mouth more, whichis great. So we're using her G
two bless she's eating purest by mouthfour times a day. Now. We
are going to Tennessee next week fora physical therapy intensive and so we're really
(36:59):
hoping to work on sitting, armycrawling. Those are kind of our big
ticket items right now that we're workingtowards. And a lot of people don't
know this, but insurance doesn't usuallycover intensive therapies that they do not so
that's an out of pocket expense foryour family, it is, Yes,
So we are doing a three weekintensive. So not only are we paying
(37:22):
for three hours a day, fivedays a week for three weeks out of
pocket. Yeah, they also haveto live there, drive their drive there.
Jeff will still be at home withthe big kids, so they'll have
food expenses here. I'll have foodexpenses there. So it's just a big
(37:42):
Yeah. We've been really fortunately,like you know, we have. It's
been creative funding friends or family tostay at places instead of renting if we
can. Like and one thing Isay about like just the people you meet
throughout this journey, Like they're peopleare so like willing to help you,
Like if even if someone we didn'teven know, like a play somewhere like
that, they're so like generous andlike people to help to help ease the
(38:07):
burden. Uh, I need financiallyto make those things happen because they know
it's it's a huge benefit to thethe kids. Yeah, I'm gonna just
really quick talk about this. Ifwe don't end up using it, that's
fine, but if we do,I think it'd be cool to have it
on podcasts. You had a Tshirt design idea about a singer and a
(38:32):
song that you heard in the Nick. You specifically about a line from that
song. Tell us a little bitabout that. So we were driving up
to the Nick one day and Jeffthat this song comes on every day when
I'm driving up there. He said, you have to listen to it.
It really ends on every day whenyou were driving. Yeah, it was
on the rate all the time.It was popular at the time. Chris,
(38:52):
Chris Stapleton, you know a songand like it really has nothing to
do with like you know, ifyou think about the later of the song,
it's like nothing to do at allwith like the situation. But there's
just some like lines in it thatkind of resonated, like just felt like
they made sense for us at themoment. But what was the line?
Do you remember the hills in thevalley would be like, there's mountains of
(39:17):
the climb, there's mountains to climband rivers across it, totally space,
I've got it, I've got itright here. Oh I did have it
right here? Can you movegra onmy phone over there? Let see?
(39:38):
It was there's rivers to cross andhills to climb. And then you said
that reminds us of how far we'vecome and how we continue to climb hills
big and small every day. Yeah, yeah, that's really neat. It's
a good reminder for all of us. Yep. And then there was a
line about no matter how like drivingmiles and miles. We used to drive
(40:05):
an hour and a half each wayfor therapy towards the week, and we
drove an hour to get to theneck. You every single day when she
was in the neck, how wouldyou describe you were day to day life
(40:25):
now compared to that first maybe evencall it three or four months. It's
I think it's more routine now,Like I'm also like thinking back on she
had so many like monitors and thingslike wi was constant noises around the house
like beeping, and you know,changing her feeding pump, her abneum monitor,
(40:45):
her paul socks, and like justtaking care of her like day like
it was. I mean, shehad caffeine, she was taken rabiliar leave,
We had all sorts of we hadto change out her, her feeding,
Caitlin was having a pump. Imean, it was just like chaos
on the like we were just tryingto survive. I think it's it's more
calm now, like more structured,but like there's still I feel a lot
(41:06):
of guilt, like you know,like any free moment we have, like
we should be doing more therapy withher at home, or we should be
doing this or that with her.Like that's the hardest part is that.
But you gotta balance like the otherkids, like they they gave up a
lot during all those times when wewere caring for Caroline, and we gotta
make sure that they're me and takingcare of two and we need some time
(41:28):
to ourselves too, to like takecare of ourselves. We don't probably do.
It's good with Jah I was akid, but it started to balance
all that stuff. Jeff, whatwhat about Caroline makes you most proud?
I think just that she's like determined, you know, like she's very like
(41:49):
determined to show us that she's willingto do whatever. And she's I don't
know, she's a happy little girl. And I'm like, that makes me
the It would be honestly tougher.I think if she didn't smile for the
longest time, but I think ifshe if she didn't have that, you
know, I think that'd be harder. I don't us all, but she
(42:09):
you know, she knows. Shelets us know that she's she's okay,
and she's gonna show us what shecan do. And that's I think one
of the most happy proud about it. Kalen wouldbout you makes groud to be
your mother. That she is sodetermined and works hard no matter what is
(42:31):
thrown at her, from what wewere told to what we see. She's
kind of always just said nope,I'm gonna do it my way, kind
of like her mom. I wouldmaybe use the word stubborn sometimes in the
(42:52):
most COMMI but I think the bestis that she's gotten stronger and now she'll
give it's it's a hug, andwe perceive it as a hug. She
will put her arms around your neckand most people would think she's not doing
(43:13):
but we know that it's nice toknow that we can feel her love.
When she was in the Nike andthe day we got her MRI results.
I just told Jeff, I said, I just want her to know I
love her. That's all I wantfor her is to know she's loved,
and we know she is. Andnow we can tell that she knows.
(43:43):
Is that your biggest hope for her, for her features to always know how
much she's loved. Yes, Ithink you've done that. Ye good,
I'm good. Was there anything elsethat you guys want to talk about that
we didn't touch on? I thinkmaybe just for a parents and stuff that
(44:07):
going through your stuff like this isjust to give yourself a break sometimes and
h's realized you can't do it alland you're doing the best you can.
And what would you tell a dadright now that's just at the starting gate,
like you were driving to that equipment. I don't, I just I
(44:30):
think throughout the whole thing just likejust have faith and believe that you'll get
through it. I think one ofthe things that tossed most every time we
like you know, we go toappointment and they tell so you need to
do this, or like this isthe new thing that she needs right now,
Like it's overwhelming. It's like justyou would never believe that you could
do all those things. Like butI think back, I tell kit when
(44:51):
sometimes like when even like she hada she was a a cast at one
point two for her hip displasia,and it's like she's you know it,
it's hard to say, like it'sjust another thing we got to deal with,
and like you're like it's amazing howhow much you can do once you
get like it's the routine. ButI mean you do give up a lot
of things, but like you cando it, Like that's if you you
(45:15):
can do it, like anybody cando it. It's it's not that we've
choosed it if we had to,but like you can do it, like
anybody can can do it. Andif you get hard news, take it
for what it is. But letyour child show you what they're going to
do. Because the doctors tell youwhat they know, but what they don't
(45:37):
know is how these kids are sodetermined and what they're really going to do,
And don't be afraid to seek outa second opinion. Find the doctor
that is going to rally around yourkid more than somebody else, because we've
we've gone through several doctors until wefound our team, who is Team Caroline.
(46:04):
At go Shout Love, we doamazing things for amazing families with kids
on rare medical journeys. Each month, we shout Love for families through the
sale of creative apparel inspired by thekids. This month's the Hard Roads are
the Ones Worth Choosing design is inspiredby Caroline, a happy and curious girl
from Peachtree City, Georgia, whocontinues to climb hills big and small every
(46:28):
day with determination, even when theroads are difficult. Every purchase in August
will go towards the cost of intensivetherapy for Caroline that is not covered by
insurance. Visit our website at goshout dot Love to support Caroline through the
purchase of a T shirt, hat, tank top, hoodie, or other items
Give it a one word description ofeach of your kids, like their person
Daddy, you're going to do ittoo, Okay, so we're gonna put
you on the spot. Probably similarto bit Liam goodness, he's very focused,
I would say focused. Charlotte's fun. She loves to flip around and
(00:25):
just have fun. She always hasa smile on her face. Caroline is
curious. That's a good word.She likes to explore everything. Don I'm
gonna shift it a little bit.What are a couple of things that each
of your kids love to do?Leam loves to play baseball. That's his
(00:48):
favorite thing by far, is toplay baseball. Charlotte is as far as
activities, she's really gotten into tumblinghere recently. But she also likes to
draw as very artistic. It's reallygood at it actually. And then Caroline
just likes to move to be aroundother people. She loves to interact with
(01:10):
other people. She's a very happybaby, you know. Fortunately we're thankful
for that. Like she's very easygoing and happy. This month, we
are introducing you to a little girlwho is happy, determined, and without
a doubt curious. Everyone, MeetCaroline. My name is Seth Carnell and
(01:32):
this is the ghost Shot Love podcast. Today we are in Peachtree City,
Georgia, and are sitting down withCaroline's parents, Caitlin and Jeff, who
are ready to tell you all aboutCaroline. I occasionally try and pronounce the
diagnosis of our future child, buttoday, after a few attempts, I'm
(01:53):
just going to pass it along toCaitlin and Jeff, who will not only
say it correctly, but we'll tellyou all about what it means for Caroline's
medical journey and her daily life.I can, however, pronounce the name
of caroline siblings. She has abrother named Liam and a sister named Charlotte,
both of whom adore and care forCaroline in a way that will definitely
(02:15):
warm your heart. This is alwaysa favorite of ours, hearing about how
siblings of kids on rare medical journeysare stepping up and teaching us all about
inclusion and unconditional love. Leading thisconversation is Josh Veitch, our executive director
of Go Shout Love, and JessicaSanto, our family relations director and talented
(02:37):
photographer. Caroline Story is nothing shortof deserving. She is an extraordinary girl,
so please help us shout love forher by sharing this podcast on whatever
platform you're listening on or social media, just help us tell her story.
So you kind of have an interestingstory with Caroline besides her complexities that you
(03:00):
had her during the COVID year.Yes, so going into her journey,
did you know anything was going onwhen you were pregnant with Careley? No,
everything was normal. I had hypoomesis. That was the only thing that
was abnormal. But she was growing. She was always in like the ninety
(03:20):
to ninety fifth percentile. She wasbig and happy and everything seemed fine until
thirty six weeks to the day.I didn't feel her moving and I told
Jeff in the morning, I said, you know, I just don't feel
like she's moving, and we wereboth kind of like, well, she's
getting bigger, she's running out ofroom. This is also your third baby,
(03:44):
so you kind of know not toget too overthinking about it. Because
it was COVID. The older twokids were doing virtual school at home,
so I was trying to bounce fromcomputer to computer to help them throughout the
day with their work. And oncethey were done with school, they were
doing Kuman at the time, andI took them up there and I was
(04:04):
just sitting there. I was like, just give me a sign if I
need to go to the hospital.I just don't feel this baby moving.
So I stopped at Chick fil A, got a large coke and lemonade,
drank those didn't feel her moving,made dinner and I told Jeff. I
was like, I think we neededto call the doctor. But if we
(04:24):
call, like they're gonna make uscome up. And I delivered up in
Atlanta, so he said that's fine. So sure enough, they said come
on in, and thinking it wasgonna be nothing, they were gonna send
us home. He brought the dog, the two big kids. I had
to go in by myself because itwas COVID, and even the nurse was
(04:46):
like, oh, decreased feetle movement, the baby's got a heart rate.
It's fine. And the resident camein and she was gonna do a bedside
ultrasound and she just said, Ihave a feeling I want a full ultrasound,
so I'm gonna send you down.So she sent me down for a
full ultrasound. And she just didthat because of a feeling like there wasn't
anything that she saw that just nope. She was like, she has a
(05:06):
steady heart, right, there's novariability to it. But she's like,
I just have this feeling that weneed a full ultrasound. So she sent
me down and the girl who wasdoing the SANO I could tell she was
new, and somebody popped their headin and said, hey, I'm leaving.
Do you need anything before I go? And she's like, yeah,
I can't get this baby to wakeup. Can you see if you can
(05:27):
get her to wake up? Andturns out so when she said that,
were you like, okay, soundscorrect. I had a feeling once she
started and I didn't see her movingon ultrasound that something was up. And
then the girl that stepped in thesecond SANO tech kind of looked over at
her with a stern look and Isaid, I was innick, you,
(05:50):
nurse, I know that, lookwhat's going on? And she said,
well, I just I see thatthe court is wrapped around herneck twice.
I can't tell you if you're goingto have this baby right now, but
I can tell you you're not goinghome. So at that point, Jeff
had already started to drive back downto meet a friend halfway to get rid
(06:11):
of the kids. And the dog. You say, we'd like to quickly
because we were an hour away,our friends or family doesn't live anywhere nearby
the or knowing a way, solike we didn't have a necessary a family
member that could take them off herhands. But fortunately we had a lot
of good friends and have a lotof good friends here that are more than
(06:31):
I want to help us more ina buying. So that's kind of what
happened there. So I got backup to my room and the nurse was
in there waiting, and she said, I can't tell you're having this baby
right now, but I'm prepping youfor an emergency c section. And she
said that. The resident came runningin the room with papers and she said,
(06:53):
your baby will not survive if weinduce you. We don't know if
she will survive if we do anemergency c s So we're trying to do
everything as fast as we can tokeep you awake. Is there anyone who
can be with you? And Isaid, my husband is on his way.
She said, we will let securityknow tell him to just park and
(07:14):
run. He will not get stoppedbecause at that point there were two COVID
checkpoints. They said they know he'scoming, tell him to run, And
what's going through your mind at thatmoment? Are you thinking about what's going
through your mind? I'm sure everything. I was trying not to panic.
I was trying. I actually Itried to call him, but he's like,
(07:35):
I have the kids in the car. I said. All I said
was hurry, and I hung upthe phone and I called my sister and
she was trying to just talk tome about nothing. Neither one of us
had words, neither one. Idon't even neither one of us remember the
conversation, but she was just tryingto distract me. And then he walked
(07:56):
in the room and they said,okay, it's time. The fastest way.
We don't have a journey to getyou down there, can you walk?
So I had to walk down tothe O R. And halfway down
the hall they said we didn't doa COVID test, so they swabbed me
for COVID in the hallway, whichat that point didn't get your I think
(08:20):
people were just no one knew whatthey were doing in that's a weird moment
in time. So what was goingthrough your mind trying to get back to
the hospital, because that's no pressure. The day starts in as completely normal,
yeah, and then you go,you think you're going to an appointment,
that's just going to be a quickthing. Yeah, and then all
(08:41):
of a sudden, everything's changed ina matter of minutes. So what's it
like to get that call? Yeah? I mean, I honestly didn't know
really what was going on, becauseI was just trying to keep the other
kids calm and the dog and hurryup and get back. Yeah, go
ahead. But I knew, likeI knew Caitlin. I know Kitlin well
(09:01):
enough to know that like when sheI could just hear it in her voice,
like something was up, and Ididn't know what really, and but
I just all I could think aboutwas getting the kids to our friend and
like meet her friend, you know, and drop them off as fast as
I can and just hurry back tothe hospital. And it was probably about,
you know, a twenty thirty minutedrive from where I was to our
(09:24):
friend to meet our friend and thenback again. So I just I was
going as fast as I can Ican. The only thing I can remember,
honestly is like getting up there likesome it and reasoned not in the
greatest place, and like as faras there's a lot of homeless people that
around there, and this guy hadjumped out in front of the car I
was. I was on the wayback to the hospital, and I was
(09:46):
just frazzled, and I was likeI had to get around him, and
it was like I had just thelast thing I need right now, is
like just I was trying to getto the hospital and I walked in.
I just really wasn't thinking anything about, like other than being there and getting
to where Caitlyn wasn't seeing what wasgoing on, But I was trying to
(10:07):
focus on that at the moment,like just just getting in there and not
really trying to think too much aboutwhat happened or what was going on.
Getting rushed to the O. R. Jeff gets in, They paused you
to take a COVID test. What'sthe next thing that happens. They prepped
me for the C section. Hecame in and she was born. Within
(10:31):
a matter of minutes. She cameout and she was not crying. I
heard them say there was maconium inher fluid, which I panicked because I
was a nick nurse and I worriedthat she had aspirated. She started breathing
with just minimal stimulation. But shenever cried. She never made any noise
(10:54):
for the first twenty eight days ofher life. And they took her to
the nick and they said, shejust needs a little bit of oxygen,
but she's doing great. You know, We're just gonna take her to Observer.
So we thought, okay, andI just had this feeling after the
first time we saw her, Isaid, I told Jeff, I said,
something's not right, and they didn'twant me to go see her.
(11:18):
And I was like, you cannotkeep me from my baby. And they
were like, well, you haveto be able to transfer from the bed
to a wheelchair before you can godown, and so she were like,
oh boy, You're like she's gonnado it. She was born just after
eleven PM, and they said,well, you can go down at two
or three am if you can transferinto a wheelchair. And so Jeff just
(11:41):
knew to set an alarm because heknew, no matter what, I was
going to go down to the neck. And the nurse didn't come in,
so he went out and got awheelchair and she was like, are you
this is you should not be goingand Jeff just said, just let her
and so we went down and shewas calm. At that point, did
(12:05):
I have to did you have tomentally prepare yourself as a nick you nurse?
Because you how do you go intothe nick you with your child in
there having been a nick you nurseprior? At first, I didn't really
have any real expectations. I justwanted to be with her. As the
days went on, I wasn't Iwas getting very particular about certain things.
(12:28):
I didn't like the way they wereswaddling, like she wasn't swaddled. They
weren't doing things developmentally appropriately that Iwas used to doing. They I think
they just didn't really know how totreat her as days went on, because
she didn't fit the typical nick youmold. You think nick you usually think
(12:50):
pretty, and they have a certaincourse that they do, whereas when you
have a child with hie, it'sa totally different ballgame. It We didn't
really talk about this, but itwas interesting, like we we purposely delivered
up in Atlanta because Caitlin wasn't nickynurse and something told her that like she
wanted to deliver at a hospital,it had a like a higher level of
(13:13):
nick you care than like would havebeen locally here. So that's why we
drove an hour, you know,to deliver up there. So like,
had she not chosen to do thatand we delivered here, I don't honestly
think that the I'll come with itthen even the same you know as what
the Sano tech that said, youknow, there's a chord wrapped around her
neck. She actually lives very closeto us and she just works up there
once every couple of months. Wow. And she said, you don't know
(13:37):
how lucky you are that you're uphere and not town where you live,
just because they don't have the capabilitiesto discover that as quickly and then be
able to react as quickly. Ithink so. And they don't have residents,
they don't have doctors there. Emoryhas doctors. They're twenty four seven,
they're obies, take shifts, they'rethere for twelve hours no matter what.
(14:00):
But yeah, so I want toI want to circle back eventually to
talk a little bit more about herdiagnosis. But I so at this point,
you're delivering in a hospital that youdidn't deliver your other two at out
of a gut instinct. You goto have her sonogram because of a gut
instinct of her not moving. Sowhat does that tell you about trusting that
(14:22):
instinct and when what advice do yougive to moms as to win to trust
that or when to when not tobecause a lot of the times as moms
were told everything's fine, everything's fine, and most of the time it is
how do you differentiate that gut feelingof we need to go now, we
need to do this? For sure, for me, it was just a
(14:43):
feeling that would not go away.With the other two kids, there were
times where I went in to thedoctor because I had a concern and they're
like, nope, it's fine,everything's fine, and that was it.
Concerned went away. I didn't,you know, once I was reassured.
But this was just like a naggingfeeling. So like if it if you
have a feeling that just won't goaway, go in and get checked.
(15:07):
It's usually a reason. There's areason they call it a mother's instinct.
And Jeff, as a you strikeme as a really like calm, reasonable,
analytical kind of thinker, is thatyeastly? I think yeah, I
think that preaby hits the snail onthe head. So as that in a
(15:28):
supporting role, as a husband,how do you handle that side of things
of being supportive and yet encouraging whilealso like it was Jess was saying,
sometimes it is nothing and kind oftrying to rationally walk through like these tough
decisions. How do you find yourrole in that? I think I just
have learned over the years, likeyou know, to trust her, like
(15:48):
her instinct and like what she needs. Like and even like I said,
she was in the hospital that wedid, like I know, if she
was always kind of like, hey, you know, people are gonna think
are crazy for wanting to go uphere to learn, and I said,
it doesn't matter, like you know, it is what you want, and
like I'm I support it because Itrust. I mean, I trust she
was a great NICKI need nurse.I know she doesn't sometimes like doesn't believe
(16:08):
me when I say that, butlike I trust what she says, and
like you know, so I youknow, I just you know, that's
the best I can do, isto support her, even though I trying
to think too much about things anymore, like they do in the details,
I guess of what's going on.Sorry, cramping my leg here. So
(16:32):
it spoken like a wise a wisehusband that has just learned to go and
do what the wife says. Yeah. Yeah, I think over the years
and like through the experience on Slive, I know, people a lot of
people say, like, you seemso calm, Like I think I just
kind of have to be out oflike I can't, Like, yeah,
you can't, you can't. There'sso many things that could trust you out
(16:56):
though, Like if you're not,then like it takes your toll on me,
so like I try to. I'vejust kind of become more and more
calm, honestly over time just becauseI have to be, which is I'm
not. There's nothing wrong with that. Just in the families that we've talked
to, everyone kind of has adifferent take on stress and dealing with the
complexities and all the unknowns, whetherit's the day to day stuff that has
(17:21):
to get done, or it's theunknowns or the future and all these different
things, which all those things arereal life for everybody. But obviously in
your situation with you know, achild in a complex situation, I'm sure
it's even more magnified. Have youguys found ways to like communicate or work
(17:44):
through that individually or as a couple, or any advice that you might have
for individuals or couples going through somethingsimilar. Yeah, I mean I think
we pretty pretty good Rabbi communication,Like we talked reblily, like do issues
that you know, we are goingthrough whatever at And I think the one
thing I would encourage people to do, And I think especially for dads,
like I think there's some groups thatI've joined since of this that I think
(18:08):
just tend to have a feeling likeI can't ask for help or I can't
h you know, there's something can'tbe wrong with me. So like I
think guys tended our father's tend tonot to like want to reach out for
help even though I needed. Ididn't wind up teaking out to have therapy,
But like I definitely would encourage peopleif they need it, to go
(18:29):
do it. Caitlin, at onepoint in time she was you know,
went to see a therapist because dealingwith all the emotions of everything, and
you know, she had a lotof feelings of guilt even though there's nothing
that she did that cause and allthat stuff and a lot of I think
other parents and moms especially carry thatstuff. And so I just encouraged people
to get help if they need itand don't be don't feel bad about needing
(18:51):
help, Like, yeah, canyou can you talk a little bit more
about the groups that you've found,because we we we hear that a lot
from moms that there's a lot ofespecially Facebook groups, but there have not
been as many resources available or atleast that we've come across that Dad's been
able to connect with the should be. Yeah, there are some like basically
even the main HIE group that webelong to, there's a subgroup that's for
(19:12):
days, but there's very little trafficon it. Obviously, I probably feel
like I'm crazy. I probably commentand done a lot of other groups and
like talk with a lot of timesit is moms that I'm I'm communicating with
or talking to, so it's alittle bit different, but I don't doesn't
bother me at all. But Imean, I think just there are groups
out there, but there tend notto be very much a lot of activity
(19:34):
or you know, every once ina while, there'll be a like on
an HIE group, there'll be anew dad would join the group and say,
hey, I'm dealing with this,I need and everybody usually jumps in.
Is encouraging and like Hey, youknow, reach out anytime you need
to. But it's not like theconstant ongoing chatter or anything going on there.
And there's just I wish it wouldbe for you guys. Yeah,
you guys deal with so much pressureand so much just like I said,
(19:57):
pressure to make sure everyone is takencare of. Yeah, there's a couple
of families, we get to knowthem, like I know, there's one
in particular that I think the wifeit's at her husband's striving a line I
offered, you know several times,like am wanting to listen if anything else,
Like I don't know yet obviously don'tknow them personally or whatever, but
(20:17):
I never did reach out. ButI think it's just harder. Like I
think there's this mentality that like youcan't have you can't ask for help,
or that you have to deal withit on your own. I'm supposed to
already have all the answers. Yeah. Yeah, So for me, I
just talking with Klein and you know, and just I always joke when I
go to whatever it is, ifI you know, even any employment I
(20:40):
have, sometimes I just I talk. I'm pretty quiet, but I tend
to talk, like I think that'smy therapy, Like it's just even it's
not schedule therapy, but people Iget to know people in the line sometimes
like it just all comes out andthat's my therapy that guys. But yeah,
I think we're finding more and morethat we have these conversations with families
and sometimes the guys take a littlebit longer to crack open, but when
(21:03):
they do, they have the mostamazing things to say. So if we
could just keep this going where youknow, dads are talking more and people
are realizing that dads have a lotto say and they need to say a
lot because they need to get itoff. Hopefully we can help kind of
destigmatize that a little bit. Andlike at work, sometimes it's hard,
it's hard for him to relate topeople because people get so wrapped up in
(21:26):
these issues and it's like this isthis is nothing like what we deal with
at home. Is So, likehe did find a group at work that
they do some they're trying to starta group to work with people with disabilities
and become more accessible in their company. So he's trying to see if that's
an avenue of something that he couldgo about to help we get back.
(21:52):
There's it's been great, like justthe connections you make through this whole experience.
But there's a family that we knowfrom back at home that they so
we're going seeing company I do,and just we don't talk regularly, but
like just even that they've the scheduleda couple of calls, you know,
or I talked with them. It'sjust about things we're doing, from insurance
issues or just whatever. Like they'rethere for you know that those people are
(22:17):
there for you. I think it'sit's been good. I've been trying to
It's hard. I think the biggestthing I think for me at work is
it's just like it's having people likeunderstand or relate to you, like what
what's going on? Like it's justa how can you? How can people
get better about doing that? Whatwould be some things that they could do
(22:37):
that would help. I don't know, it's a tough thing because like I
think, like unless you're like ina situation where you have a child that
has special needs or something that's verydifficult to relate to you, and I
think I think people mean well andlike they're don't I would definitely would not
say people are not supportive at work, but like they're it's just a hard
thing to relate to, you,Like, and when we meet families that
(22:59):
have kids with not necessarily the samething, but maybe a different medical need,
like they just kind of get it, like and it's because they live
at day to day so it's Idon't know, it's a I think the
biggest thing people can do is justbe like understanding and open to I guess
everybody's got things going on, Like, it's not just us with medical there's
(23:22):
there's you know, a million thingspeople have gone on in their personal lives,
So it's not just this, butpeople being more like understanding empathetic.
Yeah, I think people are gettingto be more that way, especially like
during the COVID situation. I thinkthat's brought a lot of that out.
You get to know people more personally. I think working from home and like
seeing people's family life like more realtime and like meetings and stuff like that
(23:42):
is kind of brought some of thatout. So well, it seems like
Caroline's already kind of paving the wayfor you in that regard in work and
inclusion. What about her siblings?What has Carolyne taught each of those too?
Because they love her a lot.You can tell that they do.
Her brother has definitely changed a lot. He has become very protective of her.
(24:06):
He very much worries about her andhow people will treat her. How
do you handle that as a motherseeing your son worry for your daughter.
We've tried talking to him. Hedoesn't like to talk about his feelings.
We've tried having him talk to otherpeople. He doesn't love that either.
(24:32):
We found that sports are a goodoutlet for him. So once, but
baseball was over in the fall,he went to basketball. But he's really
picked up on other kids in schoolaround him, if they're getting picked on,
or if he notices somebody that has, you know, maybe a settled
(24:53):
disability and doesn't get picked for teams. He notices that and he tried to
He doesn't try to be overly,Oh no, I'm picking you first,
but he recognizes that. He doesn'tlet those kids get picked last. He
will help those kids in class toget the right answers to when they're working
(25:15):
in a group. You know,he'll say hi to kids that he knows
that gets picked on, just sothat they know that there's somebody there.
Even if he's not great friends withthem. He tries to just say hi,
and he just tries to be niceto everybody, And I think that's
(25:37):
really come He's always been a sweetkid, but I think he's just recognized
that his sister is going to havesome challenges growing up, and he doesn't
want to treat anyone negatively because hedoesn't want anyone to treat his sister that
way. Charlotte's been kind of quietand reserved. She's recently come out of
her shell, and she's very detectiveand she's willing to tell Annie One and
(26:02):
everyone about her sister's gtube and herAFOs and no, she doesn't walk,
but watch out what she's going totell you on her eye gays. So
she just tries to kind of includeher sister in on everything. When we're
at baseball games, she'll go runaround and play and then she'll come back
(26:22):
and be like, Okay, wellCaroline, can Caroline come with me?
So she'll take her in the strollerand run around and play with the other
kids. And then it's taught otherkids around her that she's not scary.
She's just like you. Just becauseshe can't talk, she can still tell
you what she wants. Kids they'rethe best teachers in her cards to that.
Yeah. I mean we've had kidscome up and be like, what's
(26:44):
that when we're giving her water somethingin her gtube? So we tell them.
Sometimes they'll say, oh, canI see sure? And then you
know, the parents are like,get back here. Don't ask questions.
What are you doing? You like, what's your advice about that? Let
kids be kids, kids are curious, Let them out questions. What if
what if the child asks something wherethe parents like, oh my gosh,
I can't read you ask that?Or are they you know, we would
(27:07):
just tell the parents, you know, it's totally fine. Yeah, we
don't mind at all. This ishow kids learned. This is how the
world gets to be more inclusive.This is how people become more empathetic and
understanding if they can see other kidsdoing something that's different. You know,
we always just say, she doesn'tdrink water by her mouth, so it
(27:27):
just goes straight into a tube anddo her tummy, you know. And
most kids are like, well,I like to drink from a straw,
And we're like, yeah, isn'tit so cool that you get to drink
from a straw? And hers justshe doesn't even have to work for it.
It just goes straight into our jummy. I think the biggest thing is
is like don't for parents and adults, like don't worry about saying the wrong
thing, like because I think theytend to act the other way, like
(27:48):
don't like just to stay away.And like I can remember this one time
we met a lady at a momat the a lake near our house.
We can take the colf cart there, but the we met her and her
son had a feeding tube. Carolynwas on the continuous feed at that time,
so we had the pump and everythingwith us, and she saw that
and she's like just started a conversationabout it and whatever. And I can't
(28:10):
remember, honestly, like what allthe her son had had. I think
we had CP as well, butshe we just talked to her for a
while and like we were learning andasking questions, and she she you could
tell us she was so relieved.And nobody ever stops and talks to me
when I'm with my she had onekid. She nobody ever stops and talks
to me because they're afraid to likesay the wrong thing. Like she's like,
she was so happy just to talkto somebody, and I think we're
(28:34):
fortunate because we do have other kids, and like they, we do have
like they have friends through that group. Like if you're a single or you
have one kid that has a disabilityor special need, I think it's even
harder because like you just lovely peopledon't I don't think intended to exclude you.
It just happens because like it,you know, they can't do the
same things. They can't run aroundwith the other kids and or whatever that
(28:55):
you know, there's always something thatkind of limits them in some way,
and that like you just come ofstuff getting included on things that we are
fortunate because we have the other kidsthat we kind of still have those activities
and things we get pulled into.But I would say in terms of like
adults too, we've noticed that wedon't get invited to things people. We
still have friends, but you know, we have one set of friends who
(29:19):
are great, and they always askus, hey, we're we have a
babysitter, were born out, Canyou guys come nine times out of town?
We say no, they still keepasking, And just because we can't
go, it doesn't mean that wedon't want to be included, you know,
it means the world to us whensomeone asks us if we can do
(29:41):
something, even if we know we'renot going to be able to And even
though this couple knows that we're notgoing to be able to do, they
still ask and the invite still matters. Yes. Yeah, And that's the
thing is like, and I getit too, because like there's so many
times we we don't we can't gobecause you know, we've got she's got
(30:03):
to go to better, we've gotto take care of her. We're trying
to do therapy with her when wecan any free time we haven't. It
just it's just it's hard to go. Le's to say yes, and like
so you kind of get a situationwhere it's not like you don't want to,
but like that's more important right nowis looking after Carolina, making sure
she's getting everything she needs. Sodon't be offendedive we say no. Yeah,
(30:26):
Let's talk a little bit about thosetherapies just for a minute, because
Gosha loves helpefully helping for that tohappen a little bit more for you guys.
So, she's been in therapy,intense therapies since she was how long
she started when she was seven daysold, and she started intensive therapy,
and the nick you she was gettingtherapy five days a week, she would
(30:48):
get PT twice a week, OHTthree times a week, and then speech
five days a week. So speechfor her at that point was feeding therapy.
They were trying to teach her howto suck when she was born.
She did not suck, follow orhave a gag reflex. So, and
this, I guess we didn't reallycover the medical complexity so that she does
(31:08):
have going on, so really quickly, how do we how do we describe
her diagnosis if you can? Yep. So Caroline was diagnosed with HIE,
which is hypoxic a schemic encephalopathy.That means that she did not have blood
and oxygen flowing to her brain priorto birth because her cord was wrapped around
(31:29):
her neck twice, she had atrue knot in her cord, and her
cord was wired or hypercoiled, sothey said it looked like an old fashioned
telephone cord. So all those thingswere kind of the perfect storm to lead
to her not getting adequate blood andoxygen. And when your body doesn't get
blood and oxygen, the first placethat shuts off too is your brain,
(31:49):
so we learned when she was abouttwelve hours old, they let me give
her a bottle and we quickly learnedthat she could not swallow properly. Her
vitals changed. She dropped from beinglike one hundred percent oxygen down to forty.
Heart rate dropped, and they hadto kind of bring her back from
there. They thought she was havingseizures, so they started an EG.
(32:15):
She did not have seizures, whichled them to an MRI where she got
the HIE diagnosis. From there.When she was one, she was diagnosed
with cerebral palsy and dystonia in herarms. So the dystonia is she can't
control her arm movements. It's justkind of a twisting and turning of her
muscles. It can be very painful. Hers has gotten better a lot better
(32:38):
with therapy, but that's her bigdiagnosis. And then actually just a week
ago, she had her first seizure. A lot of kids with HIE are
prone to epilepsy and having seizures.For her, we don't know what this
means. Since it was the firstone. We don't know if it was
related to illness. We don't knowif this is epilepsy coming out we're kind
(33:00):
of an awake and see on thatyou just describe that all very well.
So these on the diagnosis you saidthat she was in an MRI. Is
that you said, yes? Andhow is it the amount of blood flow
(33:20):
still to the brain is that howthey're able to tell or how does the
n maria help diagnose that? Soshe has damage. They can very clearly
see that part of her brain isdamage. There's two areas for her.
It's the foulmus on both sides andthe cortical spinal tracks. So the way
she was presenting when she was inthe NICKU when she was six days old,
(33:44):
they sat us down and said theydidn't think she would ever move anything
below the neck based on where herdamage was, that she would not be
able to see or hear. That'skind of where we started. And then
they said, your best hope isto try intensive therapy. Yeah, And
so we started the next day.Yeah, and she's been doing that NonStop
since then. Yes, she didnot respond to painful stimuli, she did
(34:07):
not respond to touch, and wewould sit there and the occupational therapist had
us just run our finger up herarm. Nothing ever happened, And then
one day she brought her arm up, bent her elbow, and that was
what they wanted to happen. AndI'm I'm guessing that had to feel like
seeing your kid ride their bike.Like the amount of like pride and joy
(34:30):
and like like all this work thatshe's been putting in, Yeah make you
pretty proud, mama. Yes,Yeah, it's just encouraging. And like
the you know, the group,the HIA group is the big thing is
like there is hope, you know, hope for HI and likely that's the
biggest thing. And the whole thingis like no matter what the doctors tell
you, and a lot of timethat's they don't know. So they tell
(34:52):
you that you're looking at the brainand MARII and they're telling you that these
are the facts, like there's damagehere and here, but they don't know
two kids will be the saying likeyou could have the same damaged areas and
they could have totally different outcomes.So like they can ever tell you.
So like the biggest thing is justto not give up on the fact that
like something you know they can do. You know, neuroplasticity is like a
(35:13):
huge thing with with kids that havebrain damage, and like, you know,
only they can show us like whatthey're capable of, and you just
got to give them whatever you cantools and therapies to help them, you
know, retrain their their brain torewire it, if you want to think
of it that way, to toto be able to communicate. Because the
biggest thing with all this is justthe the damage to their brain. Like
(35:34):
your brain controls everything, and likethat's that's what happens, is that you
know, there's those damages, youknow, affect different things for different kids,
and different even like I said,same same areas affected different two different
kids would have different you know results, you know. So it's what are
some of the major things that she'sworking on now. Sitting is our biggest
(35:54):
goal right now. She's getting alot stronger, her body has calmed down
quite a bit. She used tojust throw herself back all the time.
Now she well kind of sit withvery minimal support. She did sit for
five seconds by herself. Yeah,it's very like a baby steps Like it's
(36:15):
it's real slow, Like can youguys try not to cheer two out second?
So do intensive therapies help with that? Yes, So we just did
a five day intensive therapy down inFlorida, and she we were hoping that
(36:37):
she would get stronger with sitting withit her she decided she was going to
start eating by mouth more, whichis great. So we're using her G
two bless she's eating purest by mouthfour times a day. Now. We
are going to Tennessee next week fora physical therapy intensive and so we're really
(36:59):
hoping to work on sitting, armycrawling. Those are kind of our big
ticket items right now that we're workingtowards. And a lot of people don't
know this, but insurance doesn't usuallycover intensive therapies that they do not so
that's an out of pocket expense foryour family, it is, Yes,
So we are doing a three weekintensive. So not only are we paying
(37:22):
for three hours a day, fivedays a week for three weeks out of
pocket. Yeah, they also haveto live there, drive their drive there.
Jeff will still be at home withthe big kids, so they'll have
food expenses here. I'll have foodexpenses there. So it's just a big
(37:42):
Yeah. We've been really fortunately,like you know, we have. It's
been creative funding friends or family tostay at places instead of renting if we
can. Like and one thing Isay about like just the people you meet
throughout this journey, Like they're peopleare so like willing to help you,
Like if even if someone we didn'teven know, like a play somewhere like
that, they're so like generous andlike people to help to help ease the
(38:07):
burden. Uh, I need financiallyto make those things happen because they know
it's it's a huge benefit to thethe kids. Yeah, I'm gonna just
really quick talk about this. Ifwe don't end up using it, that's
fine, but if we do,I think it'd be cool to have it
on podcasts. You had a Tshirt design idea about a singer and a
(38:32):
song that you heard in the Nick. You specifically about a line from that
song. Tell us a little bitabout that. So we were driving up
to the Nick one day and Jeffthat this song comes on every day when
I'm driving up there. He said, you have to listen to it.
It really ends on every day whenyou were driving. Yeah, it was
on the rate all the time.It was popular at the time. Chris,
(38:52):
Chris Stapleton, you know a songand like it really has nothing to
do with like you know, ifyou think about the later of the song,
it's like nothing to do at allwith like the situation. But there's
just some like lines in it thatkind of resonated, like just felt like
they made sense for us at themoment. But what was the line?
Do you remember the hills in thevalley would be like, there's mountains of
(39:17):
the climb, there's mountains to climband rivers across it, totally space,
I've got it, I've got itright here. Oh I did have it
right here? Can you movegra onmy phone over there? Let see?
(39:38):
It was there's rivers to cross andhills to climb. And then you said
that reminds us of how far we'vecome and how we continue to climb hills
big and small every day. Yeah, yeah, that's really neat. It's
a good reminder for all of us. Yep. And then there was a
line about no matter how like drivingmiles and miles. We used to drive
(40:05):
an hour and a half each wayfor therapy towards the week, and we
drove an hour to get to theneck. You every single day when she
was in the neck, how wouldyou describe you were day to day life
(40:25):
now compared to that first maybe evencall it three or four months. It's
I think it's more routine now,Like I'm also like thinking back on she
had so many like monitors and thingslike wi was constant noises around the house
like beeping, and you know,changing her feeding pump, her abneum monitor,
(40:45):
her paul socks, and like justtaking care of her like day like
it was. I mean, shehad caffeine, she was taken rabiliar leave,
We had all sorts of we hadto change out her, her feeding,
Caitlin was having a pump. Imean, it was just like chaos
on the like we were just tryingto survive. I think it's it's more
calm now, like more structured,but like there's still I feel a lot
(41:06):
of guilt, like you know,like any free moment we have, like
we should be doing more therapy withher at home, or we should be
doing this or that with her.Like that's the hardest part is that.
But you gotta balance like the otherkids, like they they gave up a
lot during all those times when wewere caring for Caroline, and we gotta
make sure that they're me and takingcare of two and we need some time
(41:28):
to ourselves too, to like takecare of ourselves. We don't probably do.
It's good with Jah I was akid, but it started to balance
all that stuff. Jeff, whatwhat about Caroline makes you most proud?
I think just that she's like determined, you know, like she's very like
(41:49):
determined to show us that she's willingto do whatever. And she's I don't
know, she's a happy little girl. And I'm like, that makes me
the It would be honestly tougher.I think if she didn't smile for the
longest time, but I think ifshe if she didn't have that, you
know, I think that'd be harder. I don't us all, but she
(42:09):
you know, she knows. Shelets us know that she's she's okay,
and she's gonna show us what shecan do. And that's I think one
of the most happy proud about it. Kalen wouldbout you makes groud to be
your mother. That she is sodetermined and works hard no matter what is
(42:31):
thrown at her, from what wewere told to what we see. She's
kind of always just said nope,I'm gonna do it my way, kind
of like her mom. I wouldmaybe use the word stubborn sometimes in the
(42:52):
most COMMI but I think the bestis that she's gotten stronger and now she'll
give it's it's a hug, andwe perceive it as a hug. She
will put her arms around your neckand most people would think she's not doing
(43:13):
but we know that it's nice toknow that we can feel her love.
When she was in the Nike andthe day we got her MRI results.
I just told Jeff, I said, I just want her to know I
love her. That's all I wantfor her is to know she's loved,
and we know she is. Andnow we can tell that she knows.
(43:43):
Is that your biggest hope for her, for her features to always know how
much she's loved. Yes, Ithink you've done that. Ye good,
I'm good. Was there anything elsethat you guys want to talk about that
we didn't touch on? I thinkmaybe just for a parents and stuff that
(44:07):
going through your stuff like this isjust to give yourself a break sometimes and
h's realized you can't do it alland you're doing the best you can.
And what would you tell a dadright now that's just at the starting gate,
like you were driving to that equipment. I don't, I just I
(44:30):
think throughout the whole thing just likejust have faith and believe that you'll get
through it. I think one ofthe things that tossed most every time we
like you know, we go toappointment and they tell so you need to
do this, or like this isthe new thing that she needs right now,
Like it's overwhelming. It's like justyou would never believe that you could
do all those things. Like butI think back, I tell kit when
(44:51):
sometimes like when even like she hada she was a a cast at one
point two for her hip displasia,and it's like she's you know it,
it's hard to say, like it'sjust another thing we got to deal with,
and like you're like it's amazing howhow much you can do once you
get like it's the routine. ButI mean you do give up a lot
of things, but like you cando it, Like that's if you you
(45:15):
can do it, like anybody cando it. It's it's not that we've
choosed it if we had to,but like you can do it, like
anybody can can do it. Andif you get hard news, take it
for what it is. But letyour child show you what they're going to
do. Because the doctors tell youwhat they know, but what they don't
(45:37):
know is how these kids are sodetermined and what they're really going to do,
And don't be afraid to seek outa second opinion. Find the doctor
that is going to rally around yourkid more than somebody else, because we've
we've gone through several doctors until wefound our team, who is Team Caroline.
(46:04):
At go Shout Love, we doamazing things for amazing families with kids
on rare medical journeys. Each month, we shout Love for families through the
sale of creative apparel inspired by thekids. This month's the Hard Roads are
the Ones Worth Choosing design is inspiredby Caroline, a happy and curious girl
from Peachtree City, Georgia, whocontinues to climb hills big and small every
(46:28):
day with determination, even when theroads are difficult. Every purchase in August
will go towards the cost of intensivetherapy for Caroline that is not covered by
insurance. Visit our website at goshout dot Love to support Caroline through the
purchase of a T shirt, hat, tank top, hoodie, or other items
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