January 9, 2024 • 43 mins
Paisley was diagnosed with Neonatal Marfan’s syndrome shortly after birth, a condition occurring at a frequency of 2 to 3 people per 10,000.Paisley’s medical story began with a dramatic entrance, marked by a c-section due to her fluctuating heart rate. The discovery of a heart murmur, turned-in feet, and unusually long fingers prompted a swift transfer to a different hospital, where the diagnosis unfolded. Neonatal Marfan’s syndrome, a rare connective tissue disorder, became the new reality for Marissa, Chris, and their newborn daughter.
Amidst the shock and uncertainty, the couple navigated the complex world of rare medical journeys, seeking answers and understanding.
Amidst the shock and uncertainty, the couple navigated the complex world of rare medical journeys, seeking answers and understanding.
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Episode Transcript
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(00:04):
Hey everybody, Welcome back to theGo Shout Love Podcast. My name is
Seth Carnellen. Today we are inPiedmont, Oklahoma, meeting Miss Paisley,
who is our feature kiddo for themonth of January, kicking off the year
in twenty twenty four. Now,Miss Paisley was described by her parents as
loving, determined, and outgoing,and she lives up to every single one
(00:25):
of those words. From the momentthat we walked in the door, she
was smiling at us, wanted toplay with us, and was saying hi
to us all throughout the time whenthat we were there. She is nothing
short of delight and I wish everybodywould have the chance to meet her.
We do our best with the video, with the podcast and pictures, and
please take a look at all thosethings, but it doesn't really do justice
(00:47):
to the personality of Miss Paisley.So we'll do our best to try to
communicate her story through her parents,Marissa and Chris, who will guide us
through everything Paisley, from her dailylife to her medical journey with neon Nato
Marfan syndrome, which is a syndromethat doesn't come with a lot of answers.
It is still being learned about andis different for every kid or every
(01:10):
person who's diagnosed with it. Sothey will walk us through the medical journey
of how they found out about thediagnosis, about the delivery of Paisley,
and everything that has happened to themsince. Before we begin, I want
to remind everybody that Go Shout Lovewe are here to do amazing things for
amazing families with kids on rare medicaljourneys. So each month we shout love
(01:30):
for these families through the sale ofcreative apparel that are inspired by the kids.
And this month, Love Your PeopleDesigned is inspired by Paisley, who
knows her people and loves them well, and so every purchase in January will
go on to help with the costof therapies for Paisley. So visit our
website Go Shout dot Love and youcan purchase a T shirt or a hat,
(01:55):
hoodie, plenty of other items thatwill go and help support Paisley and
her family. Now leading this conversationis Josh Speech, our executive director of
Go Shout Love. You will hearoutside noises and Paisley playing in the background.
Even though it was recorded in December, it was very nice outside a
little brisk, but it was lovelyand so we sat outside and recorded this
(02:17):
episode with Marissa and Chris, whowere a great couple to talk to.
And I hope you enjoy it asmuch as we did. Marissa, Chris,
thank you for having us in youat your home and introducing us to
your family. And so let's startthere. You have a pretty special little
(02:37):
girl. Tell us her name andage, and then we'll get into learning
a little bit more about her.Her name is Paisley and she'll be two
in February first, So we're recordingthis in early December, so we got
a couple months to prepare for thebig, the big number two, oh
yeah, coming up. And Chris, what would what were would you describe?
(03:00):
Would you use to describe Paisley's personality? I would say Paisley's personality is
a outgoing b fearless and see ifI had to use a word to describe
her, I would say, whatis the use? Maybe we said loving?
(03:21):
Loving? She loves her people.Yeah, she knows every person in
her life's name and she says themover and over. And she woke up
this morning and the first thing shesaid was, you know, Daddy,
uncle Tad. She loves her people. So she is a people person absolutely
through and through. And we've beenhere only a few minutes and she is
(03:44):
on the move and she is sheshares well. She uh has a really
cool cowboy hat cowgirl hat that litbites up. Yeah, and she was
quick to share that and let ustry it on, which was fun a
show off. Yeah. So shewhat right now she's swinging and that's putting
(04:05):
a big smile on her face.Mom. What else does she love to
do? She now that she's moremobile, she wants to walk all the
time. She loves to eat,well literally eats anything and everything. Yeah,
she doesn't have anything that she turnsdown at all. So she has
(04:25):
a great palette and she likes herswing obviously. So yeah, she likes
to hang out with her dog too. Yeah. Yeah, I mean she's
just the people person for a littlealmost two year old. Yeah. And
so tell me a little bit aboutyour journey. And like you guys were
(04:46):
telling me before we started recording,that you've been we're in the Oklahoma City
at Oklahoma City area, and yousaid you've been here around nine years?
Is that right? Nine years now? Yeah? And so and Paisley is
your first and so you were newinto this parenting thing, and parenting is
a challenged Seth and I were justhaving this conversation on the drive how difficult
(05:08):
it is sometimes to be a goodparent. So parenting a struggle or difficult,
tons of stresses. Yeah, ofcourse. And then you introduced some
medical complexities and I'm sure that.So let's get into a little bit about
Paisley's story and and how at whatpoint you kind of learned that there might
(05:33):
be some indicators of some some otherthings happening. So we didn't find out
anything until she was born. Therewas no warning prior to birth or anything
like that. We had actually showedup for the last ultrasound prior to having
her her scheduled date, and theydid the ultrasound and they said that the
(05:56):
fluid in the ambiotic sac was low, and so our doctor let us know
that we were going to have herthat day and to go home and pack
your stuff and come back to thehospital and get ready to have a baby.
Yeah. And how far from thedo date was that. I think
it was two thirty eight, twoweeks, two weeks prior. Yeah,
so she almost made it for aterm and which is a great thing.
(06:20):
So yeah, we showed up atthe hospital and they went to give Marissa
the medication to start the process,and we actually we had a family friend
that was our labor and delivery nurse, and so about twenty minutes later they
came back in and they said somestuff was going on with her heart and
(06:44):
that we were going to have tohave an emergency C section and it was
time to go. Yeah, soyeah, they wield her back there,
willed Marissa back there, and Iwas pacing like a madman in the in
the room. Still scary, youknow, Oh yeah, I mean I
was almost in tears at that point, and you know, just stood there
(07:08):
and held Maurice's hand, and thenthey brought Paisley out via c section,
obviously, and you know, justwaiting there, listening for the cry,
to make sure she's breathing and everythinglike that. So you know, heard
a cry immediately, and you seeyour child for the first time, and
you don't know any different. Imean, I never had a child before,
so she looked completely normal to me. And you know, they brought
(07:31):
her over to the table and wetook pictures and I held her and everything
like that, and then they letus know that they were going to take
her up to the nick You saidthey heard a heart murmur like at that
point, but they didn't think anythingelse really until like hours later probably,
(07:54):
and then she was in the nickYou. They at a separate hospital.
They took her from me, andI never met her for two days,
and then he met her with hismom. They went to the other hospital.
This is all during COVID, sowe're under COVID regulations to not allowing
family or friends into the hospital.And so originally when she was they took
(08:22):
her to the NIKEI. At thefirst hospital, they called in the pediatrician,
the head pediatrician. It was youknow, midnight at that point,
and she came in and when shewas born, her eyes were gray,
they didn't have any color, andshe has the cupped ears, and so
there was some big concerns there.So they let us know that they were
(08:43):
going to be transferring her. Thedoctor came down, gave us a bunch
of medical terminology and then left,and I actually chased the pediatrician out of
the room and asked to Uh.I was like, hey, you got
it, what's going on? Giveme give me break it down for me,
(09:05):
And the original concern was that shehad what's called rebella, and so
that's a pretty I mean, frommy understanding, it's extremely, extremely rare,
even more so than the condition thatshe has. So they let us
know that they were going to betransferring her at that point, and they,
thankfully, Oh You Children's was fiveten minutes away from the hospital we
(09:28):
were at, and so they transferredto OU Children's and we spent the night
at the other hospital, and thenI went over there the next morning with
my mom, and Oh Your Children'swas extremely accommodating and understanding of the situation,
and they actually allowed my mom backthere even though it was COVID protocol.
(09:48):
So that was the last I hadheard prior to meeting her or seeing
her again. So we met withthe doctor and he let us know that
A she could hear, B shecould see, So those were immediate reliefs
there. Brain functions seemed to befiring normally, which was an extremely you
(10:15):
know relief, those really really goodnews, but we still knew that there
were some major concerns. So laterthat day Marissa was allowed to leave the
other hospital for a few hours andI took her over there and she met
Paisley for the first time, andwe we met with a cardiologist at that
(10:37):
point who gave us some indicators thathe suspected that what she had was neo
natal marfans, which we had neverheard of before. So we had to
wait for geneticists to run their testsand she was in the niqu for another
four days and then she was allowedto come home, which a thankfully we
(11:01):
live close to the hospital, sowe were able to kind of, you
know, go home, get somesleep, come back, spend time with
her, and do all those things. So they they did their testing and
they the doctor called me about aweek later and the cardiologist let me know
that, yeah, she has neonatal mar fans and that it was going
(11:24):
to require a lot of extensive visitsto the to the hospital. So it
was kind of you're a week orso in and you're you're getting some clarity
and recognizing that this is a longterm journey. Yeah, and we stayed
off of the internet. She didn'tgo so you that's what was that instructed
of you? No, that wasyou just and were like I felt like
(11:48):
I was really naive to it becausethey're like, well, we think it's
this, but we don't really know. And I was like, they keep
saying we don't really know, sowe're not going to go down a rabbit
hole if I don't even know thatthat's what it is. Yeah, But
then all the doctors when they wouldmeet us and we'd say what she had,
they'd say, I'm sorry, andwe're like, okay, so this
(12:11):
isn't good like something it had tobe tempting at least to google it,
right, I mean, yeah,I didn't google anything until we got to
for sure diagnosis. I wasn't gonna, you know, venture down that rabbit
hole, like you said, sowe didn't want to at the same time,
like you're so caught up in thecraziness of a newborn that you don't
(12:33):
have time. There's two like feelmoments that I want to come back to.
First, for you, Marissa asmom, that first night to not
even not only is she not inyour room, you're not with her for
that first night, she's not evenin the same hospital, and even though
it's only five minutes away for you, it probably doesn't feel like only five
minutes away. Yeah, that asmom, what was that feeling? Like?
(12:58):
I think it was. It wasscary because I didn't know what was
going on and also just coming outof like from being out of the C
section, and they're telling you allthis information and I was just still so
out of it that I'm like,I don't even know what's going on,
Like why are we being told allthis right now? And so I feel
(13:18):
like I relearned her like birth basicallyvia like Chris, because my mind just
she was so out of it.But I would say it was just scary,
like you don't know what to expect, but you're glad she's there,
but you also don't know what isto come when they take her to another
(13:41):
hospital because they feel like theirs isn'thigh enough to be able to care for
her. I'll to touch on thatmoment I remember from that that that night,
at that moment when they they becausethey brought her in and she was
in the incubator and you know,she's in this glass box essentially, and
(14:03):
they handed Marissa this piece of fabricand they said, we want you to,
you know, put this on yourselfand then we're gonna put it in
the box with her so that sheknows your smell and to be sitting there
and watching my wife, you know, have to that's her first interaction with
her child. It was just it'sa moment that I will never forget.
(14:26):
So it was, you know,it just plays in my mind. Sure,
it's not easy. I'm sure tosee to see your wife go through
that. Oh yeah, you knowyou you have all these expectations when you
when you find out that you're goingto have a child, and then to
have everything you know, kind ofI don't want to stay torn out from
(14:46):
underneath you. But just changed immensely, very different than what you expect.
Exactly went that day thinking oh,okay, we're gonna have a baby,
and then it just goes up ina world wind of craziness. Yeah.
The second field moment I wanted tocome back to is when the repeated sories
(15:07):
that you would get from from doctors, when that when the diagnosis is discussed,
What did it What did it feellike to hear that from a doctor
or from a medical professional. Imean, it sucked. It was hard
because they're supposed to give you theanswers and they're supposed to help you,
(15:31):
and they also don't know a lotabout new natlemar fans either. So everyone's
learning together and you're like, okay, so does the Internet tell me what
to do? Because you guys alsoare like, well it could be this
and I don't know, but Imean the same thing scary. You hear
(15:54):
those words and you kind of justrethink, like, is this how is
her life going to be? Whyare people saying? Sorry? Like,
what what are we supposed to expectout of this diagnosis? Did you feel
that in those conversations the majority ofwhat was being discussed focused on what she
(16:21):
might not be able to do inthe future versus recognizing who she is now
and could be. I think itwas more the surgeries, Like their big
focus for her is her heart isthe main problem. And so when they're
telling you your daughter's going to haveopen heart surgery and it could be early,
(16:45):
it could be later in life,you don't know. Yeah, but
they definitely just make you think alittle different. Yeah, So for someone
who is not familiar at all withfans and as you said, not that's
rare and a lot of people arestill learning and either one of you can
(17:06):
answer it doesn't whichever you feel isbest. But and Seth will probably use
this as part of our video inthe beginning, if you could just say
what the diagnosis is and then how, like in Layman's terms, what that
means and how that affects Paisley's dayto day life. That kind of set
(17:26):
it up for a listener to understandkind of what what she's going through.
Okay, Paisley has neotle mor fans, which affects the connective tissues in her
heart. So essentially the valves shehad dilated valves or sorry, excuse me,
(17:48):
some of her valves were prolapsed.She has a dilation in the aortic
route. Uh So everything that kindof connects to the heart is affected by
it. And it's not necessarily theheart itself, it's just the tissue that
surrounds in. The Other things thatare affected are that she has extremely long
extremities, so her fingers are elongated, she's very tall for her age.
(18:15):
She has she's almost double jointed forlack of a better medical term, so
she has extreme flexibility and a lotof her limbs, and then she has
some scoliosis as well. Those areall things that are affected. Usually her
(18:36):
eyes, Yeah, you'll see extremenearsightedness, so she wears glasses. But
yeah, that's kind of a briefoverview of what's going on now that you
know what it is. Do youguys know if this is more genetic based
or were there tests that they couldhave ran earlier, or is this something
(18:56):
that just kind of develops in utero. I think it's it's like I looked
it up recently. It's like aseventy five percent chance that a parent has
it and only twenty five percent thatit's a random thing. And they think,
based off of us and talking withus, that it just randomly happened.
(19:17):
We didn't do genetic testing anyways.We felt like, no one's done
it that we know, and alltheir kids are fine, Like, what
do we have to worry about?So we kind of just let it go
and found out later and then evenafter Paisley was born, you haven't done
that to know whether or not you'rein the seventy five or twenty five.
We also wanted to avoid feelings of, you know, is this my fault?
(19:42):
Sure? Yeah, you know,did I did I do guilt?
Yeah? Yeah, So we decidedto decline at least for now on the
genetic testing for us. Sure.That way we don't have to, you
know, feel guilty either way.Yeah, where she's one and only.
So that also was a reason We'relike, we're not going to do this.
(20:07):
What would you gain? Yeah?Absolutely? Yeah. Yeah. So
so you you all of the thingsthat you just outlined, Chris, are
those pretty standard markers and kind ofindicators for the diagnosis or is every case
kind of unique? From what weread? The geneticist gave us, you
(20:30):
know, a print out of whatthey had known at that time, and
we read through it and essentially everythingthat was a indicator of neonatal mar fans
is highlighted in her. So wewere like, this is I mean,
it's it's for sure that it's likeyour whole body is connective tissue. So
(20:51):
there's a lot of things that canbe. The joints are affected, the
children have like respiratory, that's It'sIt's interesting because when I was prepping to
be here, I was looking atour doc that has all of her information
in her picture, and I wentback as I looked at her birthday and
(21:11):
I thought she's too tall. Ican't only be because all I said was
she was one and then I sothen I was like, well she's almost
too so that makes a little bitmore sense. But then for you to
say that, like, yeah,I can totally see I can totally see
that in her. Yeah, she'stechnically like the height of a two year
(21:33):
old, yeah is what. Yeah. So you know, also, when
we first got the diagnosis and theinformation from the geneticis you're given the information
that life expectancy for most children withher uh diagnosis, you're looking at two
(22:00):
years at that time, is whatit said. And I think that was
another reason that we got so manysorries from the doctors and things like that,
because that was kind of the informationthat they knew about. And so,
you know, and now since they'veswitched that information actually online and Marissa
(22:22):
was looking at it the other day, what did it say. It's it
says like more it doesn't really havean age anymore. It just says like
each child is different, but withmedical advances, they can be adults.
So so that was another scary moment, was you have to prep that she
(22:42):
might not be too But now ifyou watch her, you're like, there's
no way, like, this isnot her. It doesn't define her,
right, Yeah, So when whenyou're given that information of the expectancy of
around two was that outdated information atthat time. It just hadn't been updated,
(23:07):
or have the medical advancements in thisamount of time been just that great
that they've been able to learn moreand adapt rapidly. I think that it
probably just they hadn't updated the informationat that point, and so you know,
there's I mean, I think thatin regards to life expectancy, each
(23:27):
child is case by case. Sowhat was explained to me by the doctors
is that on the level of marFans, neonatal mar Fans is the most
severe on the spectrum, and thatwithin that, within the neonatal mark spectrum,
there's obviously levels of severity to thatas well, And so I think
(23:52):
that those kind of things indicate caseby case. So that was at least
how it was explained to me.And you mentioned that with the with myur
Fans, that you're there's the eitherguarantee or strong possibility that there's going to
need to be heart surgery, Yeah, at some point, and so you
guys have already had to go throughthat, Yeah, And so tell us
(24:12):
about what led up to that andtiming around that and what that experience was
like. So with her, wewere originally told that there was a good
chance that she was going to haveto have heart surgery before one, but
that the longer obviously that you canprolong that, the stronger you know,
(24:33):
recovery and things like that. AndI'm just assuming that's because of developmental progress
and how healthy the child can beto recover faster. That's what I would
guess. I mean, she's onnumerous medications, and those those helped with
like the because her heart valves leak, so the medication slows the leak edge
(24:56):
down, and she's on heart pressurecation and she uh, she's also on
medication that I think, uh,you know, it's just about alleviating the
pressure that the valves are under.So as she's continued to grow, the
medications have been upped, and it'salso how much how her heart responds to
(25:17):
that. Fortunately, she hasn't hadany adverse response to any of the uppages
and medication and dosage. So,uh, you know, we we made
it to a year. I hada lot of when Marissa found because Marissa
found out originally the cardiologist called andlet her know, and my my grandfather
(25:41):
was in the hospital passing away atthat time. So I hopped on a
plane right after her first birthday,literally the day after, and I was
headed to Arizona and I got Igot called from my brother when I got
to the airport letting me know thatmy grandfather had passed and that and that
Marissa calls me. I'm driving andMarissa calls me and she said, you
(26:03):
know, I know you're going througha lot right now, but I also
wanted to let you know that Paysis going to have to have open heart
surgery. So it's like all thesethings are culminating at one time. And
so but she, you know,she made it to the ear mark,
which is what we wanted, andthat's all we could have asked for her
from her at that time, andasked for the doctors to get her to
that ear mark to give her thestrongest possibility of the best recovery possible.
(26:30):
So, you know, we scheduledthe appointment to come in have heart surgery.
Fortunately, Oh You Children's has oneof the most amazing cardiatric surgeons in
the in the country, so heworked his magic on her and she was
(26:51):
in the hospital including day of surgery, a total of I think five days.
That's amazing. I told us,like, oh, probably like two
weeks or so, and her cardiologisthe like continues to be like, I
always tell you guys something and sheproves me wrong, so I'm just not
going to tell you. That's likethe that's like the perfect case of under
promising over deliveredy five days and thenit went down to one week, and
(27:18):
then they were like, oh,I think five days, and yeah,
well that's a sounds like a greattestament to both the care and quality of
the of the surgeon and team there. But then also Paysley's toughness and resilience
to fight through that, and that'sawesome and it's inspiring. It. It
inspires me to when I'm having abad day or I'm having, you know,
(27:44):
an off day, we'll say,uh that I know that things could
always be worse, and that,you know, if my daughter can push
through what she's pushed through, Ican tackle pretty much anything. So I
always kind of make fun of herbecause she'll get mad about some little thing
and we're like, you had openheart surgery, You're fine, you got
(28:04):
exactly it'd be all right, You'regonna get through. You can go without
that extra thing, right, absolutely, So if I'm doing the math right,
that's in the around May of thisyear that she had surgery April.
That's her surgery. So yeah,that's awesome, and so she's no issues
(28:26):
recovering from that. She's done wellwith that. Good. They So when
when she was first when she firstcame home from the hospital and she was
originally born, the cardiologist wanted tosee her every two weeks, so we
did every two weeks and then hewas like, I think we can stretch
it to a month, and we'relike okay, and then he was always
stretch it to three months, andwe were like, this is amazing.
(28:48):
We don't have to be at thehospital every other week to see and go.
It's it's because they're going to bestressful, you know, with the
e kgs and you know, allthe testing and stuff like that. So,
uh, to be able to haveit stretched three months at that point
where we're like, this is thisis amazing. This is as good as
it gets. And then recently,you know, they continue to monitor her
(29:08):
valves and continue to monitor the heartrate and things like that, and uh,
we were just told that she's nowstretched to six months aesome. Do
you have to do any sort ofmonitoring at home? No, that's awesome.
I mean, unless there's anything thatindicates with her physically that she she
is having an issue, you knowthat, then we're free to live our
(29:32):
lives day to day. That isgreat news. Well, sorry, if
you already asked us, So youdon't know if any if any follow up
surgeries coming up in the next fouror five years or something like that,
there will be another one her.The aortic route will have to be replaced,
not repaired. But as long asthat grows as she grows and doesn't
(29:57):
grow faster than her and gets liketoo large, then so that's just a
constant monitory. Yeah, when theythink, okay it he told us.
I mean we've never even heard Imean at the beginning we heard two years
till of life expectancy, and nowhe's like, I think she might be
(30:17):
like, no surgery till she's ateenager. Like a teenager? Do you
do you? Is it hard tohear that? Like, is there is
there a part of you that wantsto just be careful with that? And
because I guess I'm not asking this, well, if I'm in your shoes,
it's I think there's an element oflike is this too good to be
(30:40):
true? To go from an expectationor like a something that could be on
one end of the spectrum so terribleto try to absorb and deal with To
be like that almost feels like toomuch of a relief to get news like
that. Does that make sense whatI'm asking? Yeah, No, I
get exactly what you're saying. Ithink I can answer for me person only.
I we just live day to day, and so that's kind of how
(31:03):
I view it is. Every dayis a blessing and that I'm not I
feel like at first there, Ilived with a lot of I lived with
a lot of anxiety about life expectancyand how and uh, you know,
(31:27):
I put a lot of I kindof think, how to phrase this,
I feel like I kind of likelived with a lot of that in my
own head and just absorbed a lotof that and dealt with it personally.
As far as the concern about lifeexpectancy, uh, and how if worst
(31:51):
case scenario happens A how am Igoing to deal with that be? How
am I going to take care ofmy wife in regards to that? And
so? And I don't know ifthere's a there's a way to do that,
But that was a lot of myconcern, and then as she's continued
to thrive, we I just Ijust like I said, I continue to
(32:13):
just enjoy each day and I don'tput as much emphasis on it as I
used to and try not to,you know, let it limit my my
joy and my happiness with her oranything like that. So I think sometimes
I just don't even think about it, especially when doctor's appointments are spread out
(32:34):
and you just kind of forget thatsomething's going on, and when you're around
her all the time, she's justa normal kid. Yeah, And I
think that makes it easier to notfocus on the bad news that we've gotten
because she's showing us completely different thanwhat we were told, and so we
(32:57):
just kind of I look at thatbecause she's doing her things, and it's
like the medical side of it canjust take a back seat to Paisley and
Paisley Yeah, yeah, yeah,which is I mean a huge blessing that
we don't have to be concerned twentyfour to seven because when she was first
came home, and you know,you're concerned with her getting you're concerned with
(33:23):
her getting sick, you're concerned you'remonitoring or eating because another part that they
let us know is that sometimes becauseof the accelerated height and uh accelerated height
and that her weight will will drop, she's not going to be able to
retain weight as easily. So theyconstantly wanted us to monitor her eating.
(33:46):
That was a big marker for hercoming home from the NICKU. So it
was something that I put a lotof emphasis on when she came home,
was making sure that you're just monitoringMILLI leaders. You're like, Okay,
how many MILLI leaders did you drinktoday? All of these things. So,
because she's growing more rapidly and becomingbigger, then then what would be
(34:07):
she's always going to be low weightbut long and lean. Yeah, they
don't seem concerned the like I mean, she's doing what she's doing and she
constantly eats, you just can't,I'm sure to be is extremely stressful if
you had a girl that you hadto have eat and she just doesn't want
to. Yeah, they told usthat, you know, maybe maybe a
(34:30):
g I tube would be something thatshe would have to have, you know,
in the future. But nothing seemsto indicate that she eats like a
mac truck. So you won't alwaysbe able to talk about your daughter,
like you can get away with thatwhen she's almost too But I think she's
going to be long and lean forlife. So good on her. I'm
(34:52):
jealous. She is so active andfun and friendly, so out side of
the potential or that she will needanother surgery on the aortic route in the
future. Are there any other dayto day things of therapies and specific things
(35:15):
that she's going through now to kindof help her continue to thrive. She
does physical therapy just to help strengthenall our muscles with the flexibility she has.
Everything's got a stay strong. Andthen she does occupational therapy. But
the physical therapy has changed her likedrastically. She changed in three weeks.
(35:38):
Three weeks ago, she couldn't evenstand up or like that. Are you
serious? Ye, your world haschanged in less than a month. Oh
yeah, I feel like it's beenlike that since she's been born, though,
is that? And she just everymonth presents something new, Every month
presents you know, a she's likeyou said to regular, you know,
(36:00):
toddler. So you're going through learninghow to talk, learning, how to
you know, call, learning howto do all these things, so you're
growing in that aspect. But thennow to you know, be working with
the physical therapists and regards to uh, you know, all the things that
she's learning and getting stronger and moreexploratory. And as we were just talking
(36:23):
about trying to take a little right, little dirt never she's making it real
to have a serious conversation. Ohyeah, absolutely love it. So he's
always on the move. Yeah,so's so cool to see. I would
I would assume that those moments ofchange, noticeable and quick have to just
(36:46):
be like a reminder, like aconstant reminder of the blessing of like all
that she's achieving. Considering where whatthe starting point expectations that you guys were
oh to go from Yeah, thecoming from the day that she was born
and being told you know that shehad potentially rebella to you know, where
(37:06):
we're at now, where we're walkingand talking and playing and just constantly into
everything. You know. It's it'slike you said, it's an immense blessing
and we're extremely fortunate to be ableto do what we're doing with her.
A lot of a lot of familiesthat we talked to find support but also
(37:32):
educational resources in in connecting with otherpeople that have been on a similar type
of journey or have a similar diagnosisor medical path. Have you guys been
able to discover any communities like thatthat have been helpful to you? Yeah,
I am like on a Facebook group. Yeah, it has its pluses
(37:54):
and its minuses. You wanna where, you want to read it, and
you want to know all the things. But everyone's so different too that you're
kind of like, well, thisdoesn't affect her, so I don't know
what to think or could this affecther later? And so I kind of
just you read it for support andknow that the heart is the one common
(38:17):
denominator. So everyone's other journey isdifferent, but the heart is the same
and they all have to vibe withthat. Yeah, it's very started dance
party, she is. I loveit. We'll keep talking while she opens
(38:39):
the karaoke machine. It's so good. Well we'll start to wrap down.
But I'm curious, chrispher you,what what are you most proud of in
Paisley's journey? Man? I wouldsay just her tenacity, like her ability
(39:02):
to overcome everything that's been presented toher and do it in a way that
is beautiful and graceful and just headon. I would say, she tackles
everything just head on, and shecomes out on top and better than expected.
(39:25):
And that's that's been what I'm mostproud of. Like I said,
she inspires me to be a betterperson, not just a better dad,
but just a better overall person.I'm kinder to people since you know,
having her and being watching her gothrough everything that she's been through, it
makes you realize that you don't knowwhat people are going through in their day
(39:50):
to day lives, and you haveto be kind to one another because you
don't know. Yeah, there's alwaysmore under the surface. Yeah. Absolutely,
Ye Marissa, what about you?I think just like her determination to
keep going no matter what's thrown ather. If she falls down, she
(40:15):
gets back up and she said,try again, try again. And it
just shows you that no matter whatlife hands to you, you got to
keep going and keep trying to dobetter and be better and accept Like Chris
said, you don't know what everyone'sgoing through, and if you looked at
her, a lot of people wouldn'treally know that what's going on underneath her
(40:40):
little chest. But she continues tojust show us and show others and people
around her that you can do whateveryou put your mind to. One question
that we often like to ask people, if you could go back to your
younger self, especially right around thetime of going through those scary days in
(41:06):
the very beginning, and you couldtell yourself one thing, what would you
knowing what you know now? Whatwould you tell yourself that it gets better?
It's hard, but not to focuson the scary and the bad.
(41:28):
And just to kind of that cliche, it is what it is saying you're
just we'll figure it out. Andme and Chris have always our life saying
is we'll figure it out, andwe continue to do it, and she
continues to figure it out and showus that she's going to be better than
(41:52):
what we were telling. I wouldsay, you know, you're stronger than
you know, and that you're you'reable to deal with you know, and
take on an immense amount of weight, and that you know your shoulders are
(42:16):
broader than you think they are,and you're gonna you're gonna be able to
carry on as a father and takecare of your daughter and take care of
your wife, and you know,tackle the day to day and so you're
stronger than you know. It wouldbe something that I would would go back
(42:38):
and tell myself because it's something thatI constantly worried about, even when I
didn't know that she had a medicalcondition. Than Jesus is that you at
(43:06):
go Shout Love, we do amazingthings for amazing families with kids on rare
medical journeys. Each month, weshout Love for families through the sale of
creative apparel inspired by the kids.This month's Love Your People design is inspired
by Paisley, a determined and outgoingtwo year old from Oklahoma who knows her
people and loves them well. Everypurchase in January will go to help with
(43:29):
the cost of therapies for Paisley.Visit our website at goshout dot Love to
support Paisley through the purchase of aT shirt, hat, hoodie, or
other items.
Hey everybody, Welcome back to theGo Shout Love Podcast. My name is
Seth Carnellen. Today we are inPiedmont, Oklahoma, meeting Miss Paisley,
who is our feature kiddo for themonth of January, kicking off the year
in twenty twenty four. Now,Miss Paisley was described by her parents as
loving, determined, and outgoing,and she lives up to every single one
(00:25):
of those words. From the momentthat we walked in the door, she
was smiling at us, wanted toplay with us, and was saying hi
to us all throughout the time whenthat we were there. She is nothing
short of delight and I wish everybodywould have the chance to meet her.
We do our best with the video, with the podcast and pictures, and
please take a look at all thosethings, but it doesn't really do justice
(00:47):
to the personality of Miss Paisley.So we'll do our best to try to
communicate her story through her parents,Marissa and Chris, who will guide us
through everything Paisley, from her dailylife to her medical journey with neon Nato
Marfan syndrome, which is a syndromethat doesn't come with a lot of answers.
It is still being learned about andis different for every kid or every
(01:10):
person who's diagnosed with it. Sothey will walk us through the medical journey
of how they found out about thediagnosis, about the delivery of Paisley,
and everything that has happened to themsince. Before we begin, I want
to remind everybody that Go Shout Lovewe are here to do amazing things for
amazing families with kids on rare medicaljourneys. So each month we shout love
(01:30):
for these families through the sale ofcreative apparel that are inspired by the kids.
And this month, Love Your PeopleDesigned is inspired by Paisley, who
knows her people and loves them well, and so every purchase in January will
go on to help with the costof therapies for Paisley. So visit our
website Go Shout dot Love and youcan purchase a T shirt or a hat,
(01:55):
hoodie, plenty of other items thatwill go and help support Paisley and
her family. Now leading this conversationis Josh Speech, our executive director of
Go Shout Love. You will hearoutside noises and Paisley playing in the background.
Even though it was recorded in December, it was very nice outside a
little brisk, but it was lovelyand so we sat outside and recorded this
(02:17):
episode with Marissa and Chris, whowere a great couple to talk to.
And I hope you enjoy it asmuch as we did. Marissa, Chris,
thank you for having us in youat your home and introducing us to
your family. And so let's startthere. You have a pretty special little
(02:37):
girl. Tell us her name andage, and then we'll get into learning
a little bit more about her.Her name is Paisley and she'll be two
in February first, So we're recordingthis in early December, so we got
a couple months to prepare for thebig, the big number two, oh
yeah, coming up. And Chris, what would what were would you describe?
(03:00):
Would you use to describe Paisley's personality? I would say Paisley's personality is
a outgoing b fearless and see ifI had to use a word to describe
her, I would say, whatis the use? Maybe we said loving?
(03:21):
Loving? She loves her people.Yeah, she knows every person in
her life's name and she says themover and over. And she woke up
this morning and the first thing shesaid was, you know, Daddy,
uncle Tad. She loves her people. So she is a people person absolutely
through and through. And we've beenhere only a few minutes and she is
(03:44):
on the move and she is sheshares well. She uh has a really
cool cowboy hat cowgirl hat that litbites up. Yeah, and she was
quick to share that and let ustry it on, which was fun a
show off. Yeah. So shewhat right now she's swinging and that's putting
(04:05):
a big smile on her face.Mom. What else does she love to
do? She now that she's moremobile, she wants to walk all the
time. She loves to eat,well literally eats anything and everything. Yeah,
she doesn't have anything that she turnsdown at all. So she has
(04:25):
a great palette and she likes herswing obviously. So yeah, she likes
to hang out with her dog too. Yeah. Yeah, I mean she's
just the people person for a littlealmost two year old. Yeah. And
so tell me a little bit aboutyour journey. And like you guys were
(04:46):
telling me before we started recording,that you've been we're in the Oklahoma City
at Oklahoma City area, and yousaid you've been here around nine years?
Is that right? Nine years now? Yeah? And so and Paisley is
your first and so you were newinto this parenting thing, and parenting is
a challenged Seth and I were justhaving this conversation on the drive how difficult
(05:08):
it is sometimes to be a goodparent. So parenting a struggle or difficult,
tons of stresses. Yeah, ofcourse. And then you introduced some
medical complexities and I'm sure that.So let's get into a little bit about
Paisley's story and and how at whatpoint you kind of learned that there might
(05:33):
be some indicators of some some otherthings happening. So we didn't find out
anything until she was born. Therewas no warning prior to birth or anything
like that. We had actually showedup for the last ultrasound prior to having
her her scheduled date, and theydid the ultrasound and they said that the
(05:56):
fluid in the ambiotic sac was low, and so our doctor let us know
that we were going to have herthat day and to go home and pack
your stuff and come back to thehospital and get ready to have a baby.
Yeah. And how far from thedo date was that. I think
it was two thirty eight, twoweeks, two weeks prior. Yeah,
so she almost made it for aterm and which is a great thing.
(06:20):
So yeah, we showed up atthe hospital and they went to give Marissa
the medication to start the process,and we actually we had a family friend
that was our labor and delivery nurse, and so about twenty minutes later they
came back in and they said somestuff was going on with her heart and
(06:44):
that we were going to have tohave an emergency C section and it was
time to go. Yeah, soyeah, they wield her back there,
willed Marissa back there, and Iwas pacing like a madman in the in
the room. Still scary, youknow, Oh yeah, I mean I
was almost in tears at that point, and you know, just stood there
(07:08):
and held Maurice's hand, and thenthey brought Paisley out via c section,
obviously, and you know, justwaiting there, listening for the cry,
to make sure she's breathing and everythinglike that. So you know, heard
a cry immediately, and you seeyour child for the first time, and
you don't know any different. Imean, I never had a child before,
so she looked completely normal to me. And you know, they brought
(07:31):
her over to the table and wetook pictures and I held her and everything
like that, and then they letus know that they were going to take
her up to the nick You saidthey heard a heart murmur like at that
point, but they didn't think anythingelse really until like hours later probably,
(07:54):
and then she was in the nickYou. They at a separate hospital.
They took her from me, andI never met her for two days,
and then he met her with hismom. They went to the other hospital.
This is all during COVID, sowe're under COVID regulations to not allowing
family or friends into the hospital.And so originally when she was they took
(08:22):
her to the NIKEI. At thefirst hospital, they called in the pediatrician,
the head pediatrician. It was youknow, midnight at that point,
and she came in and when shewas born, her eyes were gray,
they didn't have any color, andshe has the cupped ears, and so
there was some big concerns there.So they let us know that they were
(08:43):
going to be transferring her. Thedoctor came down, gave us a bunch
of medical terminology and then left,and I actually chased the pediatrician out of
the room and asked to Uh.I was like, hey, you got
it, what's going on? Giveme give me break it down for me,
(09:05):
And the original concern was that shehad what's called rebella, and so
that's a pretty I mean, frommy understanding, it's extremely, extremely rare,
even more so than the condition thatshe has. So they let us
know that they were going to betransferring her at that point, and they,
thankfully, Oh You Children's was fiveten minutes away from the hospital we
(09:28):
were at, and so they transferredto OU Children's and we spent the night
at the other hospital, and thenI went over there the next morning with
my mom, and Oh Your Children'swas extremely accommodating and understanding of the situation,
and they actually allowed my mom backthere even though it was COVID protocol.
(09:48):
So that was the last I hadheard prior to meeting her or seeing
her again. So we met withthe doctor and he let us know that
A she could hear, B shecould see, So those were immediate reliefs
there. Brain functions seemed to befiring normally, which was an extremely you
(10:15):
know relief, those really really goodnews, but we still knew that there
were some major concerns. So laterthat day Marissa was allowed to leave the
other hospital for a few hours andI took her over there and she met
Paisley for the first time, andwe we met with a cardiologist at that
(10:37):
point who gave us some indicators thathe suspected that what she had was neo
natal marfans, which we had neverheard of before. So we had to
wait for geneticists to run their testsand she was in the niqu for another
four days and then she was allowedto come home, which a thankfully we
(11:01):
live close to the hospital, sowe were able to kind of, you
know, go home, get somesleep, come back, spend time with
her, and do all those things. So they they did their testing and
they the doctor called me about aweek later and the cardiologist let me know
that, yeah, she has neonatal mar fans and that it was going
(11:24):
to require a lot of extensive visitsto the to the hospital. So it
was kind of you're a week orso in and you're you're getting some clarity
and recognizing that this is a longterm journey. Yeah, and we stayed
off of the internet. She didn'tgo so you that's what was that instructed
of you? No, that wasyou just and were like I felt like
(11:48):
I was really naive to it becausethey're like, well, we think it's
this, but we don't really know. And I was like, they keep
saying we don't really know, sowe're not going to go down a rabbit
hole if I don't even know thatthat's what it is. Yeah, But
then all the doctors when they wouldmeet us and we'd say what she had,
they'd say, I'm sorry, andwe're like, okay, so this
(12:11):
isn't good like something it had tobe tempting at least to google it,
right, I mean, yeah,I didn't google anything until we got to
for sure diagnosis. I wasn't gonna, you know, venture down that rabbit
hole, like you said, sowe didn't want to at the same time,
like you're so caught up in thecraziness of a newborn that you don't
(12:33):
have time. There's two like feelmoments that I want to come back to.
First, for you, Marissa asmom, that first night to not
even not only is she not inyour room, you're not with her for
that first night, she's not evenin the same hospital, and even though
it's only five minutes away for you, it probably doesn't feel like only five
minutes away. Yeah, that asmom, what was that feeling? Like?
(12:58):
I think it was. It wasscary because I didn't know what was
going on and also just coming outof like from being out of the C
section, and they're telling you allthis information and I was just still so
out of it that I'm like,I don't even know what's going on,
Like why are we being told allthis right now? And so I feel
(13:18):
like I relearned her like birth basicallyvia like Chris, because my mind just
she was so out of it.But I would say it was just scary,
like you don't know what to expect, but you're glad she's there,
but you also don't know what isto come when they take her to another
(13:41):
hospital because they feel like theirs isn'thigh enough to be able to care for
her. I'll to touch on thatmoment I remember from that that that night,
at that moment when they they becausethey brought her in and she was
in the incubator and you know,she's in this glass box essentially, and
(14:03):
they handed Marissa this piece of fabricand they said, we want you to,
you know, put this on yourselfand then we're gonna put it in
the box with her so that sheknows your smell and to be sitting there
and watching my wife, you know, have to that's her first interaction with
her child. It was just it'sa moment that I will never forget.
(14:26):
So it was, you know,it just plays in my mind. Sure,
it's not easy. I'm sure tosee to see your wife go through
that. Oh yeah, you knowyou you have all these expectations when you
when you find out that you're goingto have a child, and then to
have everything you know, kind ofI don't want to stay torn out from
(14:46):
underneath you. But just changed immensely, very different than what you expect.
Exactly went that day thinking oh,okay, we're gonna have a baby,
and then it just goes up ina world wind of craziness. Yeah.
The second field moment I wanted tocome back to is when the repeated sories
(15:07):
that you would get from from doctors, when that when the diagnosis is discussed,
What did it What did it feellike to hear that from a doctor
or from a medical professional. Imean, it sucked. It was hard
because they're supposed to give you theanswers and they're supposed to help you,
(15:31):
and they also don't know a lotabout new natlemar fans either. So everyone's
learning together and you're like, okay, so does the Internet tell me what
to do? Because you guys alsoare like, well it could be this
and I don't know, but Imean the same thing scary. You hear
(15:54):
those words and you kind of justrethink, like, is this how is
her life going to be? Whyare people saying? Sorry? Like,
what what are we supposed to expectout of this diagnosis? Did you feel
that in those conversations the majority ofwhat was being discussed focused on what she
(16:21):
might not be able to do inthe future versus recognizing who she is now
and could be. I think itwas more the surgeries, Like their big
focus for her is her heart isthe main problem. And so when they're
telling you your daughter's going to haveopen heart surgery and it could be early,
(16:45):
it could be later in life,you don't know. Yeah, but
they definitely just make you think alittle different. Yeah, So for someone
who is not familiar at all withfans and as you said, not that's
rare and a lot of people arestill learning and either one of you can
(17:06):
answer it doesn't whichever you feel isbest. But and Seth will probably use
this as part of our video inthe beginning, if you could just say
what the diagnosis is and then how, like in Layman's terms, what that
means and how that affects Paisley's dayto day life. That kind of set
(17:26):
it up for a listener to understandkind of what what she's going through.
Okay, Paisley has neotle mor fans, which affects the connective tissues in her
heart. So essentially the valves shehad dilated valves or sorry, excuse me,
(17:48):
some of her valves were prolapsed.She has a dilation in the aortic
route. Uh So everything that kindof connects to the heart is affected by
it. And it's not necessarily theheart itself, it's just the tissue that
surrounds in. The Other things thatare affected are that she has extremely long
extremities, so her fingers are elongated, she's very tall for her age.
(18:15):
She has she's almost double jointed forlack of a better medical term, so
she has extreme flexibility and a lotof her limbs, and then she has
some scoliosis as well. Those areall things that are affected. Usually her
(18:36):
eyes, Yeah, you'll see extremenearsightedness, so she wears glasses. But
yeah, that's kind of a briefoverview of what's going on now that you
know what it is. Do youguys know if this is more genetic based
or were there tests that they couldhave ran earlier, or is this something
(18:56):
that just kind of develops in utero. I think it's it's like I looked
it up recently. It's like aseventy five percent chance that a parent has
it and only twenty five percent thatit's a random thing. And they think,
based off of us and talking withus, that it just randomly happened.
(19:17):
We didn't do genetic testing anyways.We felt like, no one's done
it that we know, and alltheir kids are fine, Like, what
do we have to worry about?So we kind of just let it go
and found out later and then evenafter Paisley was born, you haven't done
that to know whether or not you'rein the seventy five or twenty five.
We also wanted to avoid feelings of, you know, is this my fault?
(19:42):
Sure? Yeah, you know,did I did I do guilt?
Yeah? Yeah, So we decidedto decline at least for now on the
genetic testing for us. Sure.That way we don't have to, you
know, feel guilty either way.Yeah, where she's one and only.
So that also was a reason We'relike, we're not going to do this.
(20:07):
What would you gain? Yeah?Absolutely? Yeah. Yeah. So
so you you all of the thingsthat you just outlined, Chris, are
those pretty standard markers and kind ofindicators for the diagnosis or is every case
kind of unique? From what weread? The geneticist gave us, you
(20:30):
know, a print out of whatthey had known at that time, and
we read through it and essentially everythingthat was a indicator of neonatal mar fans
is highlighted in her. So wewere like, this is I mean,
it's it's for sure that it's likeyour whole body is connective tissue. So
(20:51):
there's a lot of things that canbe. The joints are affected, the
children have like respiratory, that's It'sIt's interesting because when I was prepping to
be here, I was looking atour doc that has all of her information
in her picture, and I wentback as I looked at her birthday and
(21:11):
I thought she's too tall. Ican't only be because all I said was
she was one and then I sothen I was like, well she's almost
too so that makes a little bitmore sense. But then for you to
say that, like, yeah,I can totally see I can totally see
that in her. Yeah, she'stechnically like the height of a two year
(21:33):
old, yeah is what. Yeah. So you know, also, when
we first got the diagnosis and theinformation from the geneticis you're given the information
that life expectancy for most children withher uh diagnosis, you're looking at two
(22:00):
years at that time, is whatit said. And I think that was
another reason that we got so manysorries from the doctors and things like that,
because that was kind of the informationthat they knew about. And so,
you know, and now since they'veswitched that information actually online and Marissa
(22:22):
was looking at it the other day, what did it say. It's it
says like more it doesn't really havean age anymore. It just says like
each child is different, but withmedical advances, they can be adults.
So so that was another scary moment, was you have to prep that she
(22:42):
might not be too But now ifyou watch her, you're like, there's
no way, like, this isnot her. It doesn't define her,
right, Yeah, So when whenyou're given that information of the expectancy of
around two was that outdated information atthat time. It just hadn't been updated,
(23:07):
or have the medical advancements in thisamount of time been just that great
that they've been able to learn moreand adapt rapidly. I think that it
probably just they hadn't updated the informationat that point, and so you know,
there's I mean, I think thatin regards to life expectancy, each
(23:27):
child is case by case. Sowhat was explained to me by the doctors
is that on the level of marFans, neonatal mar Fans is the most
severe on the spectrum, and thatwithin that, within the neonatal mark spectrum,
there's obviously levels of severity to thatas well, And so I think
(23:52):
that those kind of things indicate caseby case. So that was at least
how it was explained to me.And you mentioned that with the with myur
Fans, that you're there's the eitherguarantee or strong possibility that there's going to
need to be heart surgery, Yeah, at some point, and so you
guys have already had to go throughthat, Yeah, And so tell us
(24:12):
about what led up to that andtiming around that and what that experience was
like. So with her, wewere originally told that there was a good
chance that she was going to haveto have heart surgery before one, but
that the longer obviously that you canprolong that, the stronger you know,
(24:33):
recovery and things like that. AndI'm just assuming that's because of developmental progress
and how healthy the child can beto recover faster. That's what I would
guess. I mean, she's onnumerous medications, and those those helped with
like the because her heart valves leak, so the medication slows the leak edge
(24:56):
down, and she's on heart pressurecation and she uh, she's also on
medication that I think, uh,you know, it's just about alleviating the
pressure that the valves are under.So as she's continued to grow, the
medications have been upped, and it'salso how much how her heart responds to
(25:17):
that. Fortunately, she hasn't hadany adverse response to any of the uppages
and medication and dosage. So,uh, you know, we we made
it to a year. I hada lot of when Marissa found because Marissa
found out originally the cardiologist called andlet her know, and my my grandfather
(25:41):
was in the hospital passing away atthat time. So I hopped on a
plane right after her first birthday,literally the day after, and I was
headed to Arizona and I got Igot called from my brother when I got
to the airport letting me know thatmy grandfather had passed and that and that
Marissa calls me. I'm driving andMarissa calls me and she said, you
(26:03):
know, I know you're going througha lot right now, but I also
wanted to let you know that Paysis going to have to have open heart
surgery. So it's like all thesethings are culminating at one time. And
so but she, you know,she made it to the ear mark,
which is what we wanted, andthat's all we could have asked for her
from her at that time, andasked for the doctors to get her to
that ear mark to give her thestrongest possibility of the best recovery possible.
(26:30):
So, you know, we scheduledthe appointment to come in have heart surgery.
Fortunately, Oh You Children's has oneof the most amazing cardiatric surgeons in
the in the country, so heworked his magic on her and she was
(26:51):
in the hospital including day of surgery, a total of I think five days.
That's amazing. I told us,like, oh, probably like two
weeks or so, and her cardiologisthe like continues to be like, I
always tell you guys something and sheproves me wrong, so I'm just not
going to tell you. That's likethe that's like the perfect case of under
promising over deliveredy five days and thenit went down to one week, and
(27:18):
then they were like, oh,I think five days, and yeah,
well that's a sounds like a greattestament to both the care and quality of
the of the surgeon and team there. But then also Paysley's toughness and resilience
to fight through that, and that'sawesome and it's inspiring. It. It
inspires me to when I'm having abad day or I'm having, you know,
(27:44):
an off day, we'll say,uh that I know that things could
always be worse, and that,you know, if my daughter can push
through what she's pushed through, Ican tackle pretty much anything. So I
always kind of make fun of herbecause she'll get mad about some little thing
and we're like, you had openheart surgery, You're fine, you got
(28:04):
exactly it'd be all right, You'regonna get through. You can go without
that extra thing, right, absolutely, So if I'm doing the math right,
that's in the around May of thisyear that she had surgery April.
That's her surgery. So yeah,that's awesome, and so she's no issues
(28:26):
recovering from that. She's done wellwith that. Good. They So when
when she was first when she firstcame home from the hospital and she was
originally born, the cardiologist wanted tosee her every two weeks, so we
did every two weeks and then hewas like, I think we can stretch
it to a month, and we'relike okay, and then he was always
stretch it to three months, andwe were like, this is amazing.
(28:48):
We don't have to be at thehospital every other week to see and go.
It's it's because they're going to bestressful, you know, with the
e kgs and you know, allthe testing and stuff like that. So,
uh, to be able to haveit stretched three months at that point
where we're like, this is thisis amazing. This is as good as
it gets. And then recently,you know, they continue to monitor her
(29:08):
valves and continue to monitor the heartrate and things like that, and uh,
we were just told that she's nowstretched to six months aesome. Do
you have to do any sort ofmonitoring at home? No, that's awesome.
I mean, unless there's anything thatindicates with her physically that she she
is having an issue, you knowthat, then we're free to live our
(29:32):
lives day to day. That isgreat news. Well, sorry, if
you already asked us, So youdon't know if any if any follow up
surgeries coming up in the next fouror five years or something like that,
there will be another one her.The aortic route will have to be replaced,
not repaired. But as long asthat grows as she grows and doesn't
(29:57):
grow faster than her and gets liketoo large, then so that's just a
constant monitory. Yeah, when theythink, okay it he told us.
I mean we've never even heard Imean at the beginning we heard two years
till of life expectancy, and nowhe's like, I think she might be
(30:17):
like, no surgery till she's ateenager. Like a teenager? Do you
do you? Is it hard tohear that? Like, is there is
there a part of you that wantsto just be careful with that? And
because I guess I'm not asking this, well, if I'm in your shoes,
it's I think there's an element oflike is this too good to be
(30:40):
true? To go from an expectationor like a something that could be on
one end of the spectrum so terribleto try to absorb and deal with To
be like that almost feels like toomuch of a relief to get news like
that. Does that make sense whatI'm asking? Yeah, No, I
get exactly what you're saying. Ithink I can answer for me person only.
I we just live day to day, and so that's kind of how
(31:03):
I view it is. Every dayis a blessing and that I'm not I
feel like at first there, Ilived with a lot of I lived with
a lot of anxiety about life expectancyand how and uh, you know,
(31:27):
I put a lot of I kindof think, how to phrase this,
I feel like I kind of likelived with a lot of that in my
own head and just absorbed a lotof that and dealt with it personally.
As far as the concern about lifeexpectancy, uh, and how if worst
(31:51):
case scenario happens A how am Igoing to deal with that be? How
am I going to take care ofmy wife in regards to that? And
so? And I don't know ifthere's a there's a way to do that,
But that was a lot of myconcern, and then as she's continued
to thrive, we I just Ijust like I said, I continue to
(32:13):
just enjoy each day and I don'tput as much emphasis on it as I
used to and try not to,you know, let it limit my my
joy and my happiness with her oranything like that. So I think sometimes
I just don't even think about it, especially when doctor's appointments are spread out
(32:34):
and you just kind of forget thatsomething's going on, and when you're around
her all the time, she's justa normal kid. Yeah, And I
think that makes it easier to notfocus on the bad news that we've gotten
because she's showing us completely different thanwhat we were told, and so we
(32:57):
just kind of I look at thatbecause she's doing her things, and it's
like the medical side of it canjust take a back seat to Paisley and
Paisley Yeah, yeah, yeah,which is I mean a huge blessing that
we don't have to be concerned twentyfour to seven because when she was first
came home, and you know,you're concerned with her getting you're concerned with
(33:23):
her getting sick, you're concerned you'remonitoring or eating because another part that they
let us know is that sometimes becauseof the accelerated height and uh accelerated height
and that her weight will will drop, she's not going to be able to
retain weight as easily. So theyconstantly wanted us to monitor her eating.
(33:46):
That was a big marker for hercoming home from the NICKU. So it
was something that I put a lotof emphasis on when she came home,
was making sure that you're just monitoringMILLI leaders. You're like, Okay,
how many MILLI leaders did you drinktoday? All of these things. So,
because she's growing more rapidly and becomingbigger, then then what would be
(34:07):
she's always going to be low weightbut long and lean. Yeah, they
don't seem concerned the like I mean, she's doing what she's doing and she
constantly eats, you just can't,I'm sure to be is extremely stressful if
you had a girl that you hadto have eat and she just doesn't want
to. Yeah, they told usthat, you know, maybe maybe a
(34:30):
g I tube would be something thatshe would have to have, you know,
in the future. But nothing seemsto indicate that she eats like a
mac truck. So you won't alwaysbe able to talk about your daughter,
like you can get away with thatwhen she's almost too But I think she's
going to be long and lean forlife. So good on her. I'm
(34:52):
jealous. She is so active andfun and friendly, so out side of
the potential or that she will needanother surgery on the aortic route in the
future. Are there any other dayto day things of therapies and specific things
(35:15):
that she's going through now to kindof help her continue to thrive. She
does physical therapy just to help strengthenall our muscles with the flexibility she has.
Everything's got a stay strong. Andthen she does occupational therapy. But
the physical therapy has changed her likedrastically. She changed in three weeks.
(35:38):
Three weeks ago, she couldn't evenstand up or like that. Are you
serious? Ye, your world haschanged in less than a month. Oh
yeah, I feel like it's beenlike that since she's been born, though,
is that? And she just everymonth presents something new, Every month
presents you know, a she's likeyou said to regular, you know,
(36:00):
toddler. So you're going through learninghow to talk, learning, how to
you know, call, learning howto do all these things, so you're
growing in that aspect. But thennow to you know, be working with
the physical therapists and regards to uh, you know, all the things that
she's learning and getting stronger and moreexploratory. And as we were just talking
(36:23):
about trying to take a little right, little dirt never she's making it real
to have a serious conversation. Ohyeah, absolutely love it. So he's
always on the move. Yeah,so's so cool to see. I would
I would assume that those moments ofchange, noticeable and quick have to just
(36:46):
be like a reminder, like aconstant reminder of the blessing of like all
that she's achieving. Considering where whatthe starting point expectations that you guys were
oh to go from Yeah, thecoming from the day that she was born
and being told you know that shehad potentially rebella to you know, where
(37:06):
we're at now, where we're walkingand talking and playing and just constantly into
everything. You know. It's it'slike you said, it's an immense blessing
and we're extremely fortunate to be ableto do what we're doing with her.
A lot of a lot of familiesthat we talked to find support but also
(37:32):
educational resources in in connecting with otherpeople that have been on a similar type
of journey or have a similar diagnosisor medical path. Have you guys been
able to discover any communities like thatthat have been helpful to you? Yeah,
I am like on a Facebook group. Yeah, it has its pluses
(37:54):
and its minuses. You wanna where, you want to read it, and
you want to know all the things. But everyone's so different too that you're
kind of like, well, thisdoesn't affect her, so I don't know
what to think or could this affecther later? And so I kind of
just you read it for support andknow that the heart is the one common
(38:17):
denominator. So everyone's other journey isdifferent, but the heart is the same
and they all have to vibe withthat. Yeah, it's very started dance
party, she is. I loveit. We'll keep talking while she opens
(38:39):
the karaoke machine. It's so good. Well we'll start to wrap down.
But I'm curious, chrispher you,what what are you most proud of in
Paisley's journey? Man? I wouldsay just her tenacity, like her ability
(39:02):
to overcome everything that's been presented toher and do it in a way that
is beautiful and graceful and just headon. I would say, she tackles
everything just head on, and shecomes out on top and better than expected.
(39:25):
And that's that's been what I'm mostproud of. Like I said,
she inspires me to be a betterperson, not just a better dad,
but just a better overall person.I'm kinder to people since you know,
having her and being watching her gothrough everything that she's been through, it
makes you realize that you don't knowwhat people are going through in their day
(39:50):
to day lives, and you haveto be kind to one another because you
don't know. Yeah, there's alwaysmore under the surface. Yeah. Absolutely,
Ye Marissa, what about you?I think just like her determination to
keep going no matter what's thrown ather. If she falls down, she
(40:15):
gets back up and she said,try again, try again. And it
just shows you that no matter whatlife hands to you, you got to
keep going and keep trying to dobetter and be better and accept Like Chris
said, you don't know what everyone'sgoing through, and if you looked at
her, a lot of people wouldn'treally know that what's going on underneath her
(40:40):
little chest. But she continues tojust show us and show others and people
around her that you can do whateveryou put your mind to. One question
that we often like to ask people, if you could go back to your
younger self, especially right around thetime of going through those scary days in
(41:06):
the very beginning, and you couldtell yourself one thing, what would you
knowing what you know now? Whatwould you tell yourself that it gets better?
It's hard, but not to focuson the scary and the bad.
(41:28):
And just to kind of that cliche, it is what it is saying you're
just we'll figure it out. Andme and Chris have always our life saying
is we'll figure it out, andwe continue to do it, and she
continues to figure it out and showus that she's going to be better than
(41:52):
what we were telling. I wouldsay, you know, you're stronger than
you know, and that you're you'reable to deal with you know, and
take on an immense amount of weight, and that you know your shoulders are
(42:16):
broader than you think they are,and you're gonna you're gonna be able to
carry on as a father and takecare of your daughter and take care of
your wife, and you know,tackle the day to day and so you're
stronger than you know. It wouldbe something that I would would go back
(42:38):
and tell myself because it's something thatI constantly worried about, even when I
didn't know that she had a medicalcondition. Than Jesus is that you at
(43:06):
go Shout Love, we do amazingthings for amazing families with kids on rare
medical journeys. Each month, weshout Love for families through the sale of
creative apparel inspired by the kids.This month's Love Your People design is inspired
by Paisley, a determined and outgoingtwo year old from Oklahoma who knows her
people and loves them well. Everypurchase in January will go to help with
(43:29):
the cost of therapies for Paisley.Visit our website at goshout dot Love to
support Paisley through the purchase of aT shirt, hat, hoodie, or
other items.
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