So, Mackenzie was born with hypoplastic left heart syndrome, which is HLHS, and what that means is
that her left ventricle is underdeveloped, to the point where it does not function. So she's
a single ventricle patient. Both of her major arteries come out of her right side of her heart.
We found out about Mackenzie's heart defect when I was 16 weeks pregnant. The ultrasound
tech was having like a hard time seeing the left ventricle, and so she took a bunch of pictures
and measurements, and then when they came back to talk to me, they just said that they didn't see
the left side of her heart. And and like something like that could be like incompatible with life.
So they like warned us like you're gonna come back in two weeks but we're not sure
if there will be a heartbeat. You know they they didn't know if it was fetal distress,
and they didn't know what was causing that um low heartbeat. But then her heart like
tried to kind of like reconfigure itself since there wasn't that left ventricle, it it did the
double outlet right ventricle because it like it tried its best to like work with what it had
which was actually like pretty, I mean that's what we heard some of the doctors say like,
you know her heart did the best, you know with how it was developing, yeah and they're
like that double outlet right ventricle like helped it and her aorta actually was was okay.
Which typically the first surgery is like um days after birth. They have to fix the
aorta because it's so narrow and her aorta was good size the whole time, so she avoided that
first surgery completely, when they're the most fragile, just because her aorta developed fine.
So she had her first stent at five weeks. She had her pacemaker surgery at five months. She
had a second stint at seven months, which they just kind of enlarged the first stent. Then she
had her Kawashima procedure, which is like a mix between the Glenn and part of the Fontan,
at 15 months, when she was finally big enough for that. And that was like her open heart surgery,
to kind of reroute her circulation so that she can live with a single ventricle.
But they said that since the surgery went well, there's no other like planned surgeries out in
the future right now. They're going to see how she does with this one,
because it is kind of like a blend between the second and third stage
of the the repairs they typically do for a hypoplastic left heart.
They really have their procedures kind of dialed in, they know what they have to do,
and they are complicated surgeries, but they have a really good team and we felt comfortable.
We were nervous the whole time, I think I was more nervous than you were,
but we had full confidence that they knew what they were doing.
And they have the adult congenital heart doctors there too, so she may not be able to see her same
like Dr. Patel, but then she could switch over to one of the adult congenital heart um physicians.
So I think that's just great that like they would have this you know continuity of care
her whole life, from the day she was born until she reaches adulthood and still needs that that
congenital heart care. I think that we're thrilled with the level of care that Mackenzie's received
at the Congenital Heart Center, and everyone is just like so willing to explain things to us, and
let us ask questions, and say there's no there's no dumb question, like ask what you're feeling.
And I think they've just been like it's really a comprehensive program and they have you know
everything that we need there, and I've been I've been really thrilled with the care she's received.
I had no clue the services that they offered and the depth of those services, and now that we need
a whole bunch of them, it's very reassuring to know that there is nothing that we have wanted
or needed that we didn't have. And so not only are we just thrilled with the medical staff,
but the fact that the cafeteria is open 24 hours a day - there's always a hot meal.
Um the custodian staff, pastoral, you know, food services, everyone was just which is wonderful.
The whole heart center is...having it here, rather than in Chicago or St. Louis, I don't know what
we would have done. We would have missed out on so much of life. And our son had, our oldest son,
had just started kindergarten like right after or right before she was born. So having you know,
the Children's Hospital so close to home, we were able to like help him with his homework,
and get them get them from school and do their homework and put them to bed,
and then we were able to go back to be with Mackenzie at night, and it was just like,
it was just such a blessing that we were able to do that, because I feel like
you know, it might have been harder on on them, had we not been able to be home.
Like had they had to be with their grandma or someone for such a long period of time,
so we're just thankful that we were able to do both, and you know be there for Mackenzie,
and be there for our our boys. Yeah, yeah I think at this point we're taking one day at
a time. We count every day as a blessing um and uh we're expecting to have a lot of them.