- Blake has undergone three open-heart surgeries
since he was born, his first one was
the Norwood procedure that he had
when he was seven days old.
His second one was the Glenn procedure
which he had when he was five months old.
And then his third one was Fontan which
was performed when he was three and a half years old.
So, now he's almost five so we've
almost been a full year and a half without a surgery,
and it's an amazing feeling.
But seeing the difference after each surgery
was what's really, kind of profound,
they each have their uniquenesses about them.
Obviously the Norwood kept him alive,
it kept blood flowing through his heart.
The Glenn started the rerouting in his heart
and helped his body start to deal
with the fact that he was getting big,
and he was getting more active,
and it had to pump more blood to his body.
But it hurt his head because he had never
had that much blood going to his head before,
so he constantly had these headaches,
and it was just an awful recovery for him,
and because he was so small, he couldn't
tell us anything, he could just cry and be sad.
And then after the Fontan at three and a half
he was a kid, he was a kid with a personality,
and opinions, and he recovered amazingly.
He went from having oxygen saturations in the 80s
to being 99 or 100, which he still is when
he goes and visits the cardiologist every six months now,
and being able to do things that we never thought
he'd be able to do, but it also puts
a lot of fluid in his chest, and so we
were in the hospital, what seemed like forever,
it wasn't, but it was about 17 days
after his surgery just letting all the fluid
drain away from out of his heart.
So you have a kid who's feeling good
and wants to go home, can't leave
because he's got chest tubes, but to see him now,
all of those things were completely worth it.
When he came out of his third surgery
I realized that it was the first time
I had seen my child pink.
He was pink.
He had pink lips, he had pink fingers,
there was no tinge of blue to him,
and when he woke up all he could say, is
"Why won't anybody hold me?"
And it was just, I mean, I laughed,
I cried all about it because I was so happy
that my child was here and he was pink,
but so just wanted to embrace him and couldn't
'cause his little chest was cut open.
One of the things that Brian had decided
very early when we decided to put him
through the series of three surgeries
is that we were going to raise him as a normal kid.
We wanted him to have the best childhood that he could have.
Because his heart will never be fully repaired,
we don't know what the outcome for Blake is,
we don't know what the future holds for him.
We are very optimistic because science
has advanced so much, even in the year
since he's been born, I think that there's
a lot of hope for him and his heart,
but we wanted to make sure that he
had the best childhood that he could.
So it was important to us that within
his limits, that we allowed him to go places,
we allowed him to interact with other kids,
we allowed him to play sports that didn't impact his chest.
We wanted him to be able to play sports
as long as it didn't impact his chest.
We approach everything with, let him try it,
we are always there to support him
and we always make sure that he knows
that if he needs to take a break then he can,
we keep him well hydrated, you know,
we live in Texas, so it gets hot,
so we need to be able to be sure
that he takes breaks and he doesn't
spend too much time out in the hot sun
getting dehydrated, but as far as he knows
he's just like all of his friends
and just sometimes he runs out of breath
a little bit faster so he'll sit down
and he'll take a sip of water
and he goes right back out there.
We kept a thorough blog of everything
that was happening throughout Blake's surgeries,
throughout, really the first four years of his life,
and it wasn't my decision, it was Brian's decision,
and I'll tell you how it happened was because
I got tired of talking to people on the phone.
Because I'm so emotional, every time somebody
called me when Blake was first born I got
too worked up every time somebody called,
and I'm a writer as one of my passions,
and so Brian encouraged me to channel
that energy into a blog so I didn't
have to repeat myself all of the time,
but what it turned into was not only
a catharsis for me, but also a resource for other people.
I've had people contact me from all over the world
that have told me how it gave them hope
and strength when they didn't know
what was happening when they faced
a diagnosis, or when their child
was about to go through surgery
and they didn't know what to expect,
it gave them something to refer to,
and to me that's the best thing possible
that could have come out of it
is that if we could help one other person
then it was totally worth it.
One of the things that was very important to us
when Blake first underwent his surgeries
is that we signed him up for a clinical trial.
In the clinical trial was to monitor
the oxygen levels in his brain
while he was on the heart-lung bypass machine.
They suspect, the hypothesis is, that the lack
of oxygen to the brain can cause some amount
of brain damage in these children
who are on the heart-lung bypass machine for awhile,
and the trial was to monitor it.
To take an MRI beforehand, to monitor it
very closely while they were on
the heart-lung bypass machine, and then to monitor
it after his surgeries.
And of course we don't know the outcome yet,
because they won't be revealed
until five years after the last person
goes through the trial, but knowing that:
A, either we're helping science and we're helping
advance science for some other child
or that our child may have benefited from
some new medicine or some new technology
was very important, and knowing
that he would never get less than the standard of care
through the clinical trial, I feel like
if there's an opportunity for somebody else
to try to advance science in this way,
then they owe it to themselves and they owe it to
their children and they owe it to all the other
children that are gonna be born
with congenital heart diseases to do the same.
I think that you have to take every day one day at a time.
You have to treasure every moment
and every laugh and every smile
that you have with these amazing children.
But you can't forget about yourself,
and you can't forget about the rest of your family
because you still are in this life,
you have this child with this remarkable heart,
this child that is living a remarkable life,
but you still have to be who you are,
and be true to yourself and be true to your family.
If there was one thing that I wish
I had known, it is that there is
the potential for an amazing quality of life
for these kids.
When we heard Blake's diagnosis,
when we were going through the first surgery,
all I kept thinking is, am I doing the right thing?
Am I putting this poor child through
this traumatic surgery to have no quality of life,
and what am I doing?
To see him today, and to see him happy
and smiling and playing with kids and going to preschool
and about to enter public elementary school,
it's huge, and I can't imagine not doing this for him,
I can't imagine not being connected
to the people we were connected with
when he was first diagnosed, to see other families
who had gone through it, and to see
that there is hope and there's
so much potential for these kids.