Garrett
We are now the parents of a very active
toddler with Congenital Heart Disease, but it has
been a long road to get here. My pregnancy with
Garrett was perfectly normal with the exception
that 3 weeks prior to my due date, my water
broke. After a long labor, Garrett entered the
world with a bang!
They thought he
had broken his collarbone since he wasn't moving
his right arm, and he didn't have very good apgar
scores, but it appeared that those problems were
transient.
He did have jaundice, so they took him
to the NICU to go "under the lights." I
remember crying when I was told he had jaundice because I
so wanted to have him with me and thought my baby was
sick. In retrospect, I was acting very foolish. Little
did I know that his jaundice would save his life.
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Garrett stayed in the NICU for 3 days
when his heart started to fail. My husband and I were
given the diagnosis of HLHS, Hypoplastic
Left Heart Syndrome, a very serious heart defect. If they
hadn't caught it in the hospital, Garrett would probably
have died.
We were given the choice of a heart
transplant but the chances of finding a heart were slim,
a risky three stage surgery which wouldn't repair his
heart but would make it functional, or taking him home
until he passed away a few days later.
We chose surgery and Garrett was air
transported to a Children's Hospital where, at 6 days of
age, he underwent his first open heart surgery. The
surgery was a success and after 3 weeks, we were driving
our little heart baby home to Ashburn, VA. Talk about a
long drive home from the hospital!
Garrett outgrew his first repair too
quickly and needed his second surgery at 3 months. Once
again a success and we were home only 10 days later. His
last surgery was when he was 15 months old. All looked
well and we were home in 8 days. I thought we were home
free and was elated, but Garrett developed major pleural
effusions and peritonitis, and was re-hospitalized in
Virginia.
While in the hospital, Garrett had a
major stroke that left him paralyzed on the right side
and unable to talk. Garrett was in the hospital for a
total of 45 days on this go around, and had nursing care
at home for another month afterwards.
At 16 months, Garrett was home with his
surgeries complete, and we entered his toddler years. For
a long time, my husband and I called Garrett "the
toddler who didn't toddle." Through intensive
physical therapy, he had come a very long way, from
paralyzed to crawling and cruising, but he was showing no
signs of walking. Friends and family would continually
ask me when he was going to walk. The doctors had told us
that he probably would, but he also might not.
My experience is that with toddler aged
stroke victims, this is the general answer you get.
Around Christmas, when Garrett was 22 months, we had been
told at a pediatrician appointment that we should think
about the fact that Garrett may not ever walk. Well, like
any toddler, Garrett will not be told what not to do, so
he got up and walked across the room! He practiced the
rest of the night, and three days later, he was walking
up and down the aisles of the grocery store with proud
parents behind him. Unfortunately, now he wants to walk
in the grocery store all the time…no carts please.
He is still behind in language, he has
only about 25 words at the age of 27 months, but we are
working on it. He won't ever get his right arm function
back…at least that's what the doctors say. We'll see
what Garrett thinks.
Discipline is an issue in our house.
With a toddler with chronic health problems, it is easy
to give in to every tantrum and desire. Though we are
probably more indulgent than the average parent, we like
to think we are striking a good balance.
The strength and perseverance of our
son has been amazing since he was born, and I'm sure he
has more surprises in store for us. We treat each day as
a family as a gift, and for the most part, we treat
Garrett like a regular toddler, which is, after all, what
he is!
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