my husband Jay and I step into a hospital elevator over 30 weeks pregnant
hospital elevator over 30 weeks pregnant
hospital elevator over 30 weeks pregnant with our second baby girl Ruth there are
with our second baby girl Ruth there are
with our second baby girl Ruth there are a lot of buttons to choose from we’re
a lot of buttons to choose from we’re
a lot of buttons to choose from we’re headed to the third floor the neonatal
headed to the third floor the neonatal
headed to the third floor the neonatal intensive care unit or the NICU the
intensive care unit or the NICU the
intensive care unit or the NICU the nikah is the on the third floor just
nikah is the on the third floor just
nikah is the on the third floor just above birthing and two floors above
above birthing and two floors above
above birthing and two floors above maternal fetal fetal medicine so the
maternal fetal fetal medicine so the
maternal fetal fetal medicine so the elevator is crowded with nervous dads
elevator is crowded with nervous dads
elevator is crowded with nervous dads pregnant ladies and parents of small
pregnant ladies and parents of small
pregnant ladies and parents of small children
children
children there’s quick eye contact and brief
there’s quick eye contact and brief
there’s quick eye contact and brief smiles in that space but it’s all
smiles in that space but it’s all
smiles in that space but it’s all changing as we hit each floor and that
changing as we hit each floor and that
changing as we hit each floor and that bell sounds and everyone gets out
finally it’s Jay and I holding sweaty
finally it’s Jay and I holding sweaty hands we look at each other this is
hands we look at each other this is
hands we look at each other this is going to be hard not like things I used
going to be hard not like things I used
going to be hard not like things I used to think we’re hard boss that doesn’t
to think we’re hard boss that doesn’t
to think we’re hard boss that doesn’t get you meetings with no agendas hard
get you meetings with no agendas hard
get you meetings with no agendas hard like though awareness that your child
like though awareness that your child
like though awareness that your child has a rare challenging disease who may
has a rare challenging disease who may
has a rare challenging disease who may never leave the nest this is our first
never leave the nest this is our first
never leave the nest this is our first visit to the NICU we had planned to
visit to the NICU we had planned to
visit to the NICU we had planned to limit the ultrasounds with Ruth because
limit the ultrasounds with Ruth because
limit the ultrasounds with Ruth because we had some scares with my other
we had some scares with my other
we had some scares with my other daughter charlie
daughter charlie
daughter charlie she had markers for Down’s and Turner’s
she had markers for Down’s and Turner’s
she had markers for Down’s and Turner’s that turned out to be nothing so we
that turned out to be nothing so we
that turned out to be nothing so we scheduled our 20 week sex reveal and
scheduled our 20 week sex reveal and
scheduled our 20 week sex reveal and there were shadows on Reese heart and
there were shadows on Reese heart and
there were shadows on Reese heart and she was really down low in a ball and
she was really down low in a ball and
she was really down low in a ball and they really couldn’t see much
they really couldn’t see much
they really couldn’t see much so we scheduled a fetal echo cardiogram
so we scheduled a fetal echo cardiogram
so we scheduled a fetal echo cardiogram to follow up I remember going to that
to follow up I remember going to that
to follow up I remember going to that appointment not really worried I’m
appointment not really worried I’m
appointment not really worried I’m looking back I actually don’t remember
looking back I actually don’t remember
looking back I actually don’t remember the details of the appointment only that
the details of the appointment only that
the details of the appointment only that we got to talk to the doctor right away
we got to talk to the doctor right away
we got to talk to the doctor right away and he seemed nervous to tell us what we
and he seemed nervous to tell us what we
and he seemed nervous to tell us what we were unprepared to hear those shadows
were unprepared to hear those shadows
were unprepared to hear those shadows were tumors on Ruth’s heart so for the
were tumors on Ruth’s heart so for the
were tumors on Ruth’s heart so for the next six weeks I went to two to three
next six weeks I went to two to three
next six weeks I went to two to three non stress tests a week and ultrasounds
non stress tests a week and ultrasounds
non stress tests a week and ultrasounds every other they wanted to keep a close
every other they wanted to keep a close
every other they wanted to keep a close eye on that bundle genetics counseling
eye on that bundle genetics counseling
eye on that bundle genetics counseling regular visits with the midwives and
regular visits with the midwives and
regular visits with the midwives and meeting with the team of professionals
meeting with the team of professionals
meeting with the team of professionals that would be helping us before and
that would be helping us before and
that would be helping us before and after the birth it was exhausting at
after the birth it was exhausting at
after the birth it was exhausting at best but we wanted to make it to that
best but we wanted to make it to that
best but we wanted to make it to that magical forty weeks we didn’t make it
magical forty weeks we didn’t make it
magical forty weeks we didn’t make it that long the last ultrasound showed
that long the last ultrasound showed
that long the last ultrasound showed that Ruth wasn’t growing at the rate
that Ruth wasn’t growing at the rate
that Ruth wasn’t growing at the rate that they wanted and for a child that
that they wanted and for a child that
that they wanted and for a child that was facing possible heart surgery the
was facing possible heart surgery the
was facing possible heart surgery the best plan of action was to get her out
best plan of action was to get her out
best plan of action was to get her out her conversation with the doctor that
her conversation with the doctor that
her conversation with the doctor that day was great he said I want to schedule
day was great he said I want to schedule
day was great he said I want to schedule the induction we said awesome when would
the induction we said awesome when would
the induction we said awesome when would you like to do that he said noon and I
you like to do that he said noon and I
you like to do that he said noon and I looked at him and said it’s 10:00
looked at him and said it’s 10:00
looked at him and said it’s 10:00 you’re crazy if you think I can get home
you’re crazy if you think I can get home
you’re crazy if you think I can get home pack trying to plan for care for my
pack trying to plan for care for my
pack trying to plan for care for my other daughter Charlie being the working
other daughter Charlie being the working
other daughter Charlie being the working mom that I am I packed my week with
mom that I am I packed my week with
mom that I am I packed my week with client meetings so I said we could get
client meetings so I said we could get
client meetings so I said we could get back at 2:00 we checked in at 3:00 Ruth
back at 2:00 we checked in at 3:00 Ruth
back at 2:00 we checked in at 3:00 Ruth was born at 1206
it was a great birth and I got to see
it was a great birth and I got to see her for a moment before she was taken up
her for a moment before she was taken up
her for a moment before she was taken up to the third floor with my husband
I was not alone I was with my doula we
I was not alone I was with my doula we had planned for that in our birth plan
so let’s talk about that birth team that
so let’s talk about that birth team that I had they taught me everything I apply
I had they taught me everything I apply
I had they taught me everything I apply now in parenting midwives doulas the
now in parenting midwives doulas the
now in parenting midwives doulas the birth classes I went through I’ll have
birth classes I went through I’ll have
birth classes I went through I’ll have the same message your body was made to
the same message your body was made to
the same message your body was made to do this you’re along for the ride you’re
do this you’re along for the ride you’re
do this you’re along for the ride you’re a vessel after the birth the goal was to
a vessel after the birth the goal was to
a vessel after the birth the goal was to make the trek up the elevator to that
make the trek up the elevator to that
make the trek up the elevator to that third floor getting to see Ruth was
third floor getting to see Ruth was
third floor getting to see Ruth was amazing not being able to hold her was
amazing not being able to hold her was
amazing not being able to hold her was heartbreaking so we took shifts being
heartbreaking so we took shifts being
heartbreaking so we took shifts being upstairs and resting in the recovery
upstairs and resting in the recovery
upstairs and resting in the recovery room for moms and babies a couple of
room for moms and babies a couple of
room for moms and babies a couple of hard moments there you’re surrounded by
hard moments there you’re surrounded by
hard moments there you’re surrounded by moms taking care of newborn babies I
moms taking care of newborn babies I
moms taking care of newborn babies I would hear them crying at night while I
would hear them crying at night while I
would hear them crying at night while I was getting up to pump gonna get a huge
was getting up to pump gonna get a huge
was getting up to pump gonna get a huge lift when I got to go up to see Ruth but
lift when I got to go up to see Ruth but
lift when I got to go up to see Ruth but the hardest day by far was when I was
the hardest day by far was when I was
the hardest day by far was when I was discharged for the hospital without my
discharged for the hospital without my
discharged for the hospital without my newborn no one warns you about the pain
newborn no one warns you about the pain
newborn no one warns you about the pain my head knew she was in the right spot
my head knew she was in the right spot
my head knew she was in the right spot team of professionals taking care of her
team of professionals taking care of her
team of professionals taking care of her but my heart hurts and I cried the whole
but my heart hurts and I cried the whole
but my heart hurts and I cried the whole way home
in these moments I feel the heartbreak
in these moments I feel the heartbreak is when I know I’m not being a vessel
is when I know I’m not being a vessel
is when I know I’m not being a vessel for my child in those moments that is
for my child in those moments that is
for my child in those moments that is the selfish meri personally looking at
the selfish meri personally looking at
the selfish meri personally looking at the situation and how it’s affecting me
the situation and how it’s affecting me
the situation and how it’s affecting me the faster I recognize those moments the
the faster I recognize those moments the
the faster I recognize those moments the faster I get back to being the most
faster I get back to being the most
faster I get back to being the most important thing a vessel for my child
important thing a vessel for my child
important thing a vessel for my child let’s talk about Ruth Ruth has a rare
let’s talk about Ruth Ruth has a rare
let’s talk about Ruth Ruth has a rare genetic disease called tuberous
genetic disease called tuberous
genetic disease called tuberous sclerosis complex TSD and one of her DNA
sclerosis complex TSD and one of her DNA
sclerosis complex TSD and one of her DNA strands is shorter than it should be and
strands is shorter than it should be and
strands is shorter than it should be and that DNA fights tumors forming in our
that DNA fights tumors forming in our
that DNA fights tumors forming in our body
she was born with tumors on her heart we
she was born with tumors on her heart we currently are battling infantile spasms
currently are battling infantile spasms
currently are battling infantile spasms with medicine with this type of
with medicine with this type of
with medicine with this type of condition we are constantly monitoring
condition we are constantly monitoring
condition we are constantly monitoring where the tumors form and reacting she’s
where the tumors form and reacting she’s
where the tumors form and reacting she’s behind developmentally but she surprises
behind developmentally but she surprises
behind developmentally but she surprises us every day she smiles with her whole
us every day she smiles with her whole
us every day she smiles with her whole face through everything appointments
face through everything appointments
face through everything appointments AEDs blood draws and she started doing
AEDs blood draws and she started doing
AEDs blood draws and she started doing the most amazing thing in the past two
the most amazing thing in the past two
the most amazing thing in the past two weeks it’s that transition from baby
weeks it’s that transition from baby
weeks it’s that transition from baby it’s toddler when they’re holding on to
it’s toddler when they’re holding on to
it’s toddler when they’re holding on to a ottoman and they’re holding on to a
a ottoman and they’re holding on to a
a ottoman and they’re holding on to a toy and they let go of that ottoman and
toy and they let go of that ottoman and
toy and they let go of that ottoman and they’re standing I know she’s this close
they’re standing I know she’s this close
they’re standing I know she’s this close to walking and for a 15 month old that’s
to walking and for a 15 month old that’s
to walking and for a 15 month old that’s exciting for us
I’m telling you this I realize my
I’m telling you this I realize my process and the role I am in each step
process and the role I am in each step
process and the role I am in each step we have a lot of normal days we get up
we have a lot of normal days we get up
we have a lot of normal days we get up at 5:30 in the morning trying to get a
at 5:30 in the morning trying to get a
at 5:30 in the morning trying to get a two adults toddler and a baby out of the
two adults toddler and a baby out of the
two adults toddler and a baby out of the house by 6:30 so that’s a tornado if you
house by 6:30 so that’s a tornado if you
house by 6:30 so that’s a tornado if you can imagine all of us in it pink glitter
can imagine all of us in it pink glitter
can imagine all of us in it pink glitter fruit snacks into the car I actually
fruit snacks into the car I actually
fruit snacks into the car I actually take a deep breath when I get to work
take a deep breath when I get to work
take a deep breath when I get to work because that’s the easy part of my day
because that’s the easy part of my day
because that’s the easy part of my day work and where the roller coaster starts
work and where the roller coaster starts
work and where the roller coaster starts isn’t we see something new in Ruth could
isn’t we see something new in Ruth could
isn’t we see something new in Ruth could be more sleep less sleep seizure
be more sleep less sleep seizure
be more sleep less sleep seizure activity cold and flu symptoms fever
activity cold and flu symptoms fever
activity cold and flu symptoms fever vaccine reactions when anything out of
vaccine reactions when anything out of
vaccine reactions when anything out of the ordinary happens I’m in mom mode
the ordinary happens I’m in mom mode
the ordinary happens I’m in mom mode emotionally stressed full of anxiety and
emotionally stressed full of anxiety and
emotionally stressed full of anxiety and worried and for me worrying is the worst
worried and for me worrying is the worst
worried and for me worrying is the worst it’s double punishment you worry and
it’s double punishment you worry and
it’s double punishment you worry and then if it doesn’t come to fruition
then if it doesn’t come to fruition
then if it doesn’t come to fruition double punishment we send the new
double punishment we send the new
double punishment we send the new information so whatever part of medical
information so whatever part of medical
information so whatever part of medical team it applies to and wait for the next
team it applies to and wait for the next
team it applies to and wait for the next steps and during that time I’m at my
steps and during that time I’m at my
steps and during that time I’m at my worst I’m a heart driven mom worried out
worst I’m a heart driven mom worried out
worst I’m a heart driven mom worried out of my mind my head and my heart are not
of my mind my head and my heart are not
of my mind my head and my heart are not aligned and after all this reaction we
aligned and after all this reaction we
aligned and after all this reaction we set up an appointment to address the new
set up an appointment to address the new
set up an appointment to address the new issue it could be emergent or it could
issue it could be emergent or it could
issue it could be emergent or it could be weeks depending on what kind of tests
be weeks depending on what kind of tests
be weeks depending on what kind of tests IEDs and MRIs take the longest and more
IEDs and MRIs take the longest and more
IEDs and MRIs take the longest and more in that appointment something changes in
in that appointment something changes in
in that appointment something changes in me I go from a mom to a caregiver we
me I go from a mom to a caregiver we
me I go from a mom to a caregiver we have a task to complete with a specific
have a task to complete with a specific
have a task to complete with a specific timeline and there will be some kind of
timeline and there will be some kind of
timeline and there will be some kind of outcome
outcome
outcome and path forward there’s no longer how
and path forward there’s no longer how
and path forward there’s no longer how are we gonna handle this I go back to
are we gonna handle this I go back to
are we gonna handle this I go back to being a vessel for my child’s just along
being a vessel for my child’s just along
being a vessel for my child’s just along for the ride the support for my family
because I am roofs mom I have learned
because I am roofs mom I have learned that I am braver than I imagined and I
that I am braver than I imagined and I
that I am braver than I imagined and I grow more brave in the impossible
grow more brave in the impossible
grow more brave in the impossible moments I learned that it’s okay to be
moments I learned that it’s okay to be
moments I learned that it’s okay to be afraid
now I recognize my fear I feel it
now I recognize my fear I feel it intensely and I willingly move through
intensely and I willingly move through
intensely and I willingly move through it as a result I can be transparent with
it as a result I can be transparent with
it as a result I can be transparent with my interactions with Ruth my husband and
my interactions with Ruth my husband and
my interactions with Ruth my husband and anybody else I could honestly share my
anybody else I could honestly share my
anybody else I could honestly share my mess with everyone around me and as I
mess with everyone around me and as I
mess with everyone around me and as I put Ruth in her crib at night and I read
put Ruth in her crib at night and I read
put Ruth in her crib at night and I read Charlie her book I feel in my heart in
Charlie her book I feel in my heart in
Charlie her book I feel in my heart in my head I have loved and guided them to
my head I have loved and guided them to
my head I have loved and guided them to the best of my ability that day and who
the best of my ability that day and who
the best of my ability that day and who knows what’ll happen tomorrow these days
knows what’ll happen tomorrow these days
knows what’ll happen tomorrow these days I do my best not to pose or pretend
I do my best not to pose or pretend
I do my best not to pose or pretend instead I’ve learned to be conscious in
instead I’ve learned to be conscious in
instead I’ve learned to be conscious in the moment and I learned that my family
the moment and I learned that my family
the moment and I learned that my family and friends are brave like me the people
and friends are brave like me the people
and friends are brave like me the people I want to share our story with are the
I want to share our story with are the
I want to share our story with are the ones that are sharing with me their
ones that are sharing with me their
ones that are sharing with me their chaos we are being brave together so no
chaos we are being brave together so no
chaos we are being brave together so no what makes you feel uncomfortable and
what makes you feel uncomfortable and
what makes you feel uncomfortable and deal with it head-on
deal with it head-on
deal with it head-on I don’t believe brave people have no
I don’t believe brave people have no
I don’t believe brave people have no fear I believe brave people recognize
fear I believe brave people recognize
fear I believe brave people recognize their fear faster feel it and move
their fear faster feel it and move
their fear faster feel it and move through it
through it
through it so for now today right now this is my
so for now today right now this is my
so for now today right now this is my floor and I know no matter where the
floor and I know no matter where the
floor and I know no matter where the elevator is going I will be brave when
elevator is going I will be brave when
elevator is going I will be brave when the doors open
the doors open
the doors open [Applause]
”
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