Shanley
| A few hours
after she was born, the nurse came to take Shanley to do some routine
blood work. The nurse told me
that she would have her back in my arms within the hour. I laid my head
down and fell asleep. I
suddenly woke up and looked at the clock.
It had been almost 2 hours since she left. Fear came over me and I
quickly woke my husband up and called for the nurse.
A few minutes later the nurse, pediatrician and my doctor came in
to talk to us. I had never
been so scared in my life.
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They
explained that there was a problem, and can't quite pinpoint what it was.
They needed to put her on a medication to keep her ductus from closing.
Besides the shock of all this, we had no clue what this meant. They then
explained that a Flight team was on its way from a major city where we live to
take her to a major hospital.
Here
we were just a few hours ago, proud new parents, and now we are afraid that her
life is in danger. The flight crew brought Shanley in for us to see her before
she left and gave me a Polaroid picture of her. She did not look like the same healthy baby I saw just a few
hours ago. She had all kinds of wires and IV's surrounding her, and even more
purple in color.
After
2 days of tests and meetings with many doctors, we finally found out what was
causing her to be sick. She had Coarctation of the Aorta and needed surgery to
repair the problem.
Shanley
had successful surgery the following day. When she was 1 week old, my husband
and I finally got to hold her. Everything
went well, and we all came home 2 and one half weeks later.
Not only did I fear bringing home a new baby, I feared of her condition -
so many things to remember and watch for.
When
Shanley turned a year old, we returned for her second follow up visit.
Shanley needed a procedure called valvuloplasty.
We spent one night in the hospital and were able to return home. When
Shanley turned two years old, she needed to have the procedure done again.
Shanley stayed in the hospital for only one night.
After
this procedure the doctor then briefly stated that they did as much as they
could, but can't overcorrect because of the other problems.
At this time my husband and I were stunned.
What other problem? He briefly
explained that the left side of her heart was smaller than it should be. He
informed us that she would need more surgery in the future, but she was too
small at this time. My husband and I were
very confused, this is the first we heard of another problem besides her COA.
Just
after Shanley's fourth birthday, we returned for all the routine exams with
the doctor. Shanley needed to have
surgery to repair or replace two valves in her heart, and we needed to make an
appointment with the surgeon. I rushed home in great shock and called my husband
immediately.
Shanley
was then diagnosed with Shone's complex. The
aortic and mitral valves needed to be replaced with artificial valves. Shanley
would need to be on blood thinners for the rest of her life, and a few other
medications for a short time after.
Three
weeks later we entered the hospital for her fourth surgery. Expecting the
surgery to last four to five hours, my husband and I prepared ourselves as much
as we could. Towards the end of her surgery, I began to feel the fear again that
something was wrong. With my
husband at my side we began to pray. Shortly
after that, the nurse walked into the waiting room.
When I looked at her face I immediately knew something was wrong. The
nurse explained that Shanley's heart was just not strong enough to do all the
work by herself. At this point we
had know idea what was going on. The
nurse stated that Shanley's heart needed time to rest and heal.
What
does this mean?
She
then told us about ECMO. They were waiting for the ECMO team to arrive to place
Shanley on the support. My next question
to the nurse was, what if her heart doesn't want to work in its own after
this? The nurse just shrugged her
shoulders.
The
emotional roller coaster that we experienced cannot be described.
I thought the world was ending, and feared so much that I would never be
able to hold Shanley in my arms again.
After
10 very long hours in surgery and ECMO in place, Shanley was taken to PICU. We
were only allowed to see her for a few minutes at a time. At this time, the
doctor gave us a fifty-fifty chance of Shanley getting through this.
My husband and I sat beside her feeling so helpless and knowing that
everything was up to her, she must fight as hard as she can. We talked to her all the time, trying to encourage her to
fight and telling her that all of our family was outside waiting to see her.
Five
very long and difficult days later, the doctor decided to do a "trial off".
This is when they turn the machine off, but keep everything hooked up to
see if her heart would be strong enough to work on its own.
The trial off was successful, and the next morning she was life-support
free. Two days later she was taken back into surgery and had a pacemaker placed.
Just hours after the surgery, the doctors told us it was time now to start
waking her up and letting her breathe on her own.
The
next several days were very difficult for Shanley. She participated in physical,
occupational, and speech therapy, and improved every day. At this time my
husband and I knew that we had a lot to be thankful for. Three and a half weeks
later, Shanley returned home from the hospital.
Shanley
is doing very well now. She will
need more surgeries in the future. Eventually,
she will outgrow her metal heart valves and pacemaker wires.
Just
3 months after Shanley's surgery, our pediatrician heard a heart murmur in our
one-year-old son. Bailey was diagnosed with Aortic Stenosis in January 2000.
Although Bailey's heart disease isn't as severe as Shanley's, we
worry about both of our children. We do not think about what's ahead right
now, we live day by day and enjoy our time with our children.
My
husband and I, Shanley, and her
little brother Bailey thank our
family and our friends for all the support they have given us. We truly believe that all the prayers and the support given
help us live each day to its fullest.
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