- When I was pregnant with Blake,
the pregnancy was completely normal.
I was healthy and my daughter was born early.
And so we suspected that Blake was going
to come a little bit early.
And we, but that was it.
That was the only thing that we anticipated,
would be a little bit different about
my pregnancy with him.
At my 20 week ultrasound, where they check
the anatomy and check the gender,
everything was great.
Everything looked fantastic.
There was no abnormalities, and
he had all four chambers of his heart.
At 35 weeks, Blake came into this world
as a surprise, it was a lot earlier than we
had wanted him to be here.
But he was a healthy weight, he was fine.
He was OK, everything was OK to come into the world.
Of course they took him directly to the NICU
when he was born, just because he was
technically considered a preemie, and they
wanted to check everything out.
They took Blake from me immediately when he was born
because he was early and they wanted to
check out, make sure everything was OK.
And I didn't get to see him for almost 24 hours
after he was born, because they kept running
a lot of tests on him.
They wouldn't bring him to my room.
They let me go see him in the NICU
but they just wanted to keep a close eye on him.
And it wasn't until later that they told me
he was breathing a little bit rapidly.
Which is why they were keeping such a close eye on him.
And they wanted to be sure that there wasn't
water in his lungs because he was early and
because he was delivered via C Section.
They thought that it just might be some extra
moisture in his lungs.
And so they wanted to keep a eye on him.
After about 24 hours I was getting up
to go see him in the NICU and they
told me that I couldn't come in.
Because they were running tests on him
and they didn't want me in there at the time.
Of course this alarmed me.
'Cause I didn't know what was happening.
But I went back to my room, took a shower.
And it was while I was in the shower,
that a cardiologist came into my room in the hospital.
I could hear him through the shower,
I could hear him talking to my husband.
And he, and Brian said to him,
"Well you can just tell me, what's going on,"
"and I'll tell Tiffany."
And he said, "No, I'm gonna wait"
"until she gets out."
"Go ahead and call me, here's my cell number,"
"When she gets out."
I finally got to talk to the cardiologist and
he told us what was wrong with Blake's heart.
We were absolute in complete shock.
There was a little bit of denial,
because we had the ultrasound
that showed all four chambers of his heart.
I thought something had to be wrong.
How could this possibly be?
How could you go from, having four chambers
and being developed at 20 weeks to
at 35 weeks only having two chambers
of your heart fully developed?
I just, I couldn't comprehend what that meant.
And of course I'm so thankful for the doctors
for diagnosing him so soon after he was born.
Within the first 24 hours of being born.
But none of that registered in my head at the time.
All I can think about was there has to be
something, a mistake.
There has to be a mistake.
This can't be my child.
He, everything was fine.
I didn't have anything wrong with me.
And they said that they think that
sometime after that 20 week ultrasound
that he may have suffered a heart attack
or something similar in utero which caused
the left side of his heart to stop developing.
We don't have a history of
congenital heart disease in our family.
There were no signs that made us feel like
this could even be a possibility.
So I think that added to the shock of the situation
and then of course I started blaming myself.
I started thinking of everyday, every minute
of my pregnancy was there something that I did
that caused this.
Was there something that I did
that caused this beautiful perfect child
to be born with half a heart.
And it, ya know, everybody says
they don't know what it is.
There's no signs that point to any kind
of behavior ya know whether it be exercising,
or working or whatever I did during that time.
There's nothing that points to
anybody caused this.
It just happened.
But at the time you can't help
but blame yourself.
And wonder why, why did this happen
to this perfect child?
I think the hardest part after
hearing the diagnosis was hearing what
our options were with Blake.
The cardiologist told us we had three options.
That one, we could put him on a list
for a heart transplant.
But because he was a newborn that
hearts that size, healthy hearts that size
are very difficult to come by.
And he told us we could enjoy our time with
Blake, but let Blake pass.
And that would happen within probably
a week or two of his birth.
Or we could go through a series of three
palliative surgeries, meaning that
they will never cure his heart.
They will never make his heart whole again,
but they will extend his life
and increase the quality of his life.
But that meant that we had to put him
through open, three heart
open heart surgeries at a minimum.
And that the first one had to happen
when he, within his first week of life.
So, Brian and I are both fighters.
We're not the kind of people that
just give up and we certainly weren't gonna
give up on Blake.
That wasn't even an option for us.
So we decided that we were gonna go
through the series of three surgeries,
because we owed it to Blake to let him
have the best quality of life that he could have.
After that it was just a kind of crazy,
let's look at Brian's insurance, let's look at
my insurance, let's figure out which one
Blake's gonna be on.
Because we're talking about millions of dollars
worth of medical intervention that's happening
and you have to check about lifetime caps.
And you have to check about in network and out of network.
It was crazy.
We also, we're also very lucky that we
had family in Houston, and it made our decision
to go to Texas Children's Hospital a very
easy decision.
Having one of the best, congenital heart programs
in the country, because we had access to
that medical center and to the amazing
and wonderful Dr. Fraser.
That was what we wanted to do, and so
once we made that decision, everything was
focused on getting Blake to Dr. Fraser,
and to Texas Children's as quickly as possible.
And figuring out all of the insurance,
and logistics to make that happen.
At Texas Children's, they are really
great because they have an entire
medical team that's assigned to you.
And especially with these children
with single ventricle hearts,
they are very delicate and they're very fragile.
And so they keep a very close eye on these children.
So we met with Dr. Fraser and we met with
the cardiologist that was assigned to us.
We met with Dr. Fraser and his team that he
has assigned to Blake.
It was a very interesting conversation,
because Blake has a single ventricle heart,
there's no question about that.
Hypoplastic left heart syndrome means that
he only has one side of his heart.
The right side, that's functioning.
But it also generally means that
the aortic arch is also very hypoplastic,
which means it's also very small.
And his is small, but it's not as small
as some kids that have the same condition he has.
And they think it's because he had
that 20 weeks, at least 20 weeks where his heart
was developing normally and so, his arch
developed more normally than say a child who
had this condition from the moment of conception.
So it was interesting because they said his
prognosis looks very good, but of course
we don't guarantee, we can't guarantee anything
but this is our success rate.
And our success rate comparatively to other
hospitals around the country.
So it was very reassuring knowing, A, that
we had made the best decision in terms of care
and hearing their prognosis for him
and how they were more hopeful
for him than many children.
The other thing that I remember very,
very vividly, Dr. Fraser telling me was
that it was going to be harder than
this surgery normally is.
It's normally a very difficult surgery.
The Norwood is the first surgery
and it's very difficult,
but because Blake was so small.
He had, because he wasn't eating regularly,
he was being fed through a feeding tube, he
had gotten to under five pounds.
And so they were very worried about
being able to close his chest
and to be able to sew him up after surgery.
And so that was the only major
concern that they had outside of a normal repair
of a single ventricle heart.
I feel like the situation we went through with Blake,
forced Brian and I to be stronger.
It forced each of our strengths to shine.
And allowed us to compensate
for each other's weaknesses in the situation.
He is very pragmatic and very matter of fact
about the way things have to be approached.
I'm very emotional and very, I'm a feeler.
And so, ya know, I wanna be sure that
everything is right and everything feels right
and that everything's OK with our family.
That was the other thing we had to think about.
We had a two year old daughter,
whose life was about to be turned upside down.
Because of this decision that we are making
and have no idea what the outcomes would be.
So I think it takes both of those types of,
a feeler and a planner to be able to
successfully get through something like this.