Today, we heard back from the surgical staff in Boston and they are
getting us in this month for Ellie’s surgery.
Ellie will have a full day of pre-op testing on Tuesday, May 26th
and will be admitted overnight. She will
go in for open heart surgery on Wednesday, May 27th with Dr.
Baird. They plan to do regular pre-op
testing on the 26th (blood work, other labs, etc.) plus some x-rays,
and EKG and a sedated echo. They’re also
thinking about doing an MRI on her chest, too… but will decide if it’s needed
that day. She’ll be under anesthesia this
day.
A smile on those purple lips... and some super exhaustion in those eyes.
But she's still such a sweet little girl.
On the 27th, the surgeon is going in and
repairing Ellie’s broken little heart. This
is quite a job, really. I reposted the
picture that I used to describe Ellie’s heart defect about a year ago to help
you visualize what she’s missing in her heart.
The surgeon’s planning to repair the huge hole in the ventricular septum
(the wall that separates the bottom half of the heart), patch the two large
atrial septal defects (holes in the wall that separate the top half of her
heart). The repair on the ventricular septum
will create a wall that will divide the one common valve (AV Valve) in her
heart and make it into two valves that beat against the new wall. These two valves will then operate like the
mitral and tricuspid valves that normal hearts have. Once he’s repaired the inside of her heart,
he’ll stitch it up and proceed to remove the band that’s around her pulmonary
arteries and any scar tissue that might be present from that surgery. We don’t have a time estimate on the surgery,
but I know that this is the surgery that we originally thought she’d have
(before we found out that the right ventricle was pretty small). At that time, they estimated the heart repair
at 8 hours. The removal of the PA band
and repair of the pulmonary arteries will tack on additional time, of course.
The drawing of Ellie's heart... in case you don't remember it from May 2014
This couldn’t have come at a better time. A week ago, Ellie started to act like she
acted when she was in heart failure. She’s
barely awake at all these days and we’re titrating her oxygen up a little at a
time to keep her stable. She’s on oxygen
support around the clock. I know this is
typical for ventilator-dependent kiddos, but it’s not typical for Ellie. She’s exhausted and we’re kind of limping
along until it’s surgery time.
With this news, we’re in the honeymoon phase right now. We’re so excited that Boston has the surgical
plan that we so hoped would be a possibility for Ellie… we’re thrilled that
they were able to schedule her in so soon… we’re excited to have the surgery
done and behind us… and we couldn’t be more excited about what this means for
Ellie’s quality of life and life expectancy.
Excited. That’s where we’re at
right now. We know that this wanes into
paralyzing fear, though. As much as we
try day in and day out to put this in God’s hands, it’s impossible to go about
our days without internalizing the heaviness of this all. We have faith that God will guide the hands
of the medical team as they run tests and perform surgery. We have faith that we’ll bring home a baby
that is much healthier than the one that we hold in our arms today. We have faith that He will carry our rugged
hearts through this victoriously just as He’s held us above water these last 8+
months. While we stand in the realm of
excitement now, we know that it’ll be a matter of days before that paralyzing
fear arrives and the reality of what’s about to happen to our baby sinks
in. We’re trying to stay on the excited
end of the spectrum for as long as possible… so if you see us in the next week…
please know that we are well aware of all that is about to happen to our
child. We’re well aware of the
incredible risk we’re taking on and putting her up against. We know this.
If we are happy and lighthearted… that’s because we’re still desperately
trying to hold on to the excitement side of things. Try to keep us there, friends… we need to be
there!
As long as this surgery goes as planned, this will be Ellie’s
last heart surgery. We’re no longer
looking at a 3-part repair on her heart.
Her second heart surgery should be her last… possibly forever. That’s the most amazing thing in the world to
me right now. We spent the last five months
thinking we’d only be able to have a 1-ventricle repair on our sweet girl. For a child with Down syndrome, that’s almost
a death sentence. Very rarely do those
kiddos live long enough to go to kindergarten.
I don’t know if I’d put it in those words before on this blog. If she was only able to be a 1-ventricle
repair, she’d only have a few years with us… and the quality of life in those
years would be pretty awful. That’s the
reality of what we were looking at before… three heart surgeries and then a
waiting game for organ failure and a possible transplant and very little time
with our bug.
With a 2-ventricle repair, our world has just opened
up. As long as this is successful, we
don’t have to look at the road that was so grim before. We still have plenty of hurdles ahead of us,
but Ellie’s quality of life will be normal (well, as normal as it can be while
she’s still on a ventilator). Her life expectancy
unchanged from any other person with Down syndrome. You have to understand that there was no
better news we could have gotten this week… no better time than now. God is surely showing off with this little
girl. Every. Single.
Day.
By the time Ellie is 9 months old, her heart will be
repaired. She went into heart failure
when she was 15 days old; she was given her first feeding tube at a month
old. At three months old she earned two
new holes that would help her eat and breathe for the next few years. Just before she was four months old, she had
her first heart surgery. She’s spent the
last five months getting stronger and developing into the amazing little girl
that continues to steal our hearts daily.
I can’t wait for her to be on the other side of this roller coaster of
surgeries and tests. I know they won’t
be over… I know different coasters will be waiting for her to board them, too…
but I think we’d all be happy to be out of the OR for a while.
I can’t complain… I know far too many families who have
walked a path I can’t begin to comprehend.
Far too many families who would be thrilled to have a child as “healthy”
as Ellie… know that I’m not taking this for granted, folks. I’m by no means complaining about where we
are… I’m thankful for where we’ve been and that we’re almost able to wrap up
another scary chapter in Ellie’s story.
I’m able to look ahead with so much hope and promise. I’m ready to take this little warrior to
Boston and bring her back for a life with less struggle, a life with less
exhaustion, a life that is (dare I say) “normal”. Praise God!
She joined us at the table and I let her gnaw on a green bean with
her brand new tooth - looking tired, I know.
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