>> I remember, my husband was crying and I said, "Did I do it?
I'm a mom now?" And he
says, "You don't hear him," then all I hear is.
That was Zeke, and then they brought him around the corner,
and I remember saying, "That's a big boy, he's a big baby."
Then I thought, "Oh, my gosh, he's so cute."
Then I wish to move away.
If I can be honest,
I was really sad.
I wanted, the golden moment everyone talks about,
and I didn't have mine.
I was already seeing
a high risk doctor because I have high blood pressure,
and so they did a check on Zeke.
I wasn't at Hopkins yet,
but a doctor came in and she said,
"We're going to have someone from
Hopkins come in and just take a look."
We see some things, but we're not sure exactly what we see,
but we'll have someone from Hopkins come over.
>> What happened in hypoplastic
left heart syndrome is the left ventricle,
which is normally the biggest pumping chamber of
the heart, doesn't form.
It doesn't form early as the baby's
heart's developing early in the first trimester,
but there's no way to have it form later or grow later, so Zeke,
instead of having four chambers with two big ventricles,
two big pumping chambers
really has three chambers in his heart with
his left atrium being small and his left
ventricle not being there at all,
and so he's only got one ventricle, one pumping chamber.
>> Mommy got you. [inaudible] let go of your hand.
I promise I won't.
>> Now I have two people to to think about.
I spent the first two and a half weeks
being right beside his side, 24/7.
Any time somebody came in,
I asked if I could assist in what they were
doing just to get an idea of it,
then finally he got to
a point where he was doing a little better on his own.
Yet, he was still in NICU,
but his chest was no longer open like he had the surgery,
he was recovering well.
We had so many wonderful nurses that just showed so much care.
One of the main lines I heard
a lot when we first got down there was that they
were a family and that they intended to
treat Zeke as he was their own,
and I can't say that we had a nurse that
didn't display that type of goal.
They prepared us, taught us how to give medications,
how to feed with the G-tube,
so I will say the whole team
in general did an amazing job of just preparing
us for what life was at home so that when
we finally did get to go home after the first surgery,
a lot of things was just review for us.
>> For his birthday and heartiversary,
we had his grandparents and
his godmother come out and we did a photoshoot.
The theme was boxing,
so he had a boxing ring in the background.
He had boxing gloves that said his name,
the family nickname for him is Champ,
so whenever he shows up to the event,
everybody says, the champ is here, the champ is here.
>> Before hearing the Zeke's diagnosis,
I had never heard the term HLHS before.
One of the biggest things for me was
learning how big the community is again
for HLHS and knowing
and realizing after a while, it does get easier.
>> Through this journey,
I think I've had a golden moment at least once a week.
Ever since he was born,
I've always have a golden moment,
the first time I got to touch him,
the first time I was able to kiss him,
the first time I was able to hold him.
First time coming home.
Just really big moments.
>> Just sit back and watch these little ones
that we have conquered
things that us as adults could never
even think or imagine of going through is amazing.