 OUR STORY
For Cameron. An update page for friends,
family, and well wishers of our little Cameron- born with HYPOPLASTIC LEFT
HEART SYNDROME(HLHS) on November 27, 2000.
Diagnosis: Shones'
Syndrome bordering on Hypoplastic Left Heart Syndrome, Left Pulmonary
Artery Stenosis, Hypoplastic Left Lung, Slow Emptying Stomach, GERD
(Gastro-Esophogial Reflux Disorder).
We have two sons. A beautiful 5
year old named Gabriel, and little Cameron, now 27 months old.
Journal Tuesday, April 1, 2003, 9:00
PM(CDT)
We would like to thank the doctors and nurses at UC
San Francisco, and Kaiser Hospital in Walnut Creek for their loving
support and expertise in our times of crisis. Also, to our friends and
family, who when the going got tough, never lost faith. Thank you so much
for your support, without it, I don’t know what we would have done!
--YOU WILL FOREVER BE IN OUR
HEARTS--
This story is
a work in progress...
THE PREGNANCY &
DELIVERY
The pregnancy was uneventful in all, no morning sickness to speak
of, all blood tests were normal, all ultrasounds were normal. At 11 pm on
11-26-00, a sudden gush announced that my water had broken. Giggling, I
jumped out of bed and ran to the bathroom, our 3 year old still asleep in
our bed. After a shower, my husband and I dropped a sleepy Gabriel off at
grammy & grandpa's house, and went to the hospital in Walnut Creek,
CA., our bodies shaking in anticipation of greeting our beautiful new
child.
The labor was also uneventful aside
from some drops in baby's heart rate a couple of times--which is often
normal during hard labor. In the late afternoon on 11-27-00, our son was
born!! Absolutely gorgeous with his dark hair and eyes, it was love at
first sight. He stayed with us that night, seemingly fine(his feet and
hands were blue, but we were told again and again that this was normal in
some newborns), he ate well, and was quite
alert.
GOING HOME?
The next day, we were
packed and ready to take our new baby boy home, when the discharge nurse
came in to give one final look-over. I soon noticed her intense gaze as
she listened to his heart for what seemed like hours. She said she could
hear a murmur, and called in the doctor. My memory from here fades in and
out; he said his murmur sounded suspicious, was probably nothing, but he
wanted to do an ECHO to be safe. He took our son. We were later called
into the Intensive Care Nursery(ICN), where we were told the worst news of
our life. Cameron has a serious heart defect, and will be put on a
breathing machine, given several drugs to stabilize him, and UC San
Francisco is on their way in an ambulance to take him to San Francisco.
Well I only remember two things after that, someone telling us to take a
picture of him "just in case", and going home after saying a mournful
goodbye with a plant in my arms instead of my baby. We were in total
shock. No baby of ours could have a birth defect, there must be some
mistake.
We drove to UCSF that night with the
instructions the transport team had given us. We came over the hill, Mt.
Zion, and there it was, a huge building looming in the night, 15 floors of
windows glowing, it covered city blocks, on both sides of the street. We
were told Cameron would be up on the 15th floor, so there we headed, our
three year old in toe(I needed him there).
A young doctor met us
there in the hall, he must have been pacing, waiting for us. He would let
us see Cameron, then wanted to have a meeting with us. We went into the
ICN, and in the back was our baby, almost unrecognizable now, covered with
wires and tubes, machines beeping and lights flashing. Again shock. All I
could do was hold his hand, my head hung low, tears silently falling to
the floor. My husband was my only strength, he was calm and assuring. I
don't know how long we stood there. I think there was a nurse there,
explaining the maze of life support to my husband; I heard none of it.
In the meeting in a small room down a side corridor now. I don't
remember going there. Two doctors, Pediatric Cardiologists(I didn't even
know there was such a thing), they were young and good-looking. I remember
the woman, her blue eyes caring and compassionate, she looked intensely at
us. She started to explain what was wrong with our baby, they had already
done an ECHO and several tests. She started by saying "Cameron has several
issues", she was drawing a picture on a piece of paper in an attempt to
make us understand. Again I hung my head, my shoulders shaking as I
sobbed, tears forming a puddle on the floor below me. There was no denying
it anymore, something awful was wrong with our baby.
So we had
three options, 1)-COMPASSIONATE CARE, they would do nothing, we could take
Cameron home, where he would die in days or maybe weeks of congestive
heart failure and respiratory distress. 2)-HEART TRANSPLANT, even if we
were lucky (lucky?) enough to find a donor, the chances of survival were
low. 3)-A FAIRLY NEW 3-STAGE SURGICAL REPAIR, the "Norwood Procedure",
this option has the highest survival statistics, but the long term
survival is uncertain, because the repair itself is fairly new. "You don't
have to make any decisions tonight" they said "Go home tonight and rest"
they said. On the way home, one thought kept running through my head; the
thought of him being in pain was more than I could bear, however, if he
was drowning, would I just leave him there just because there was a chance
that he would have permanent brain damage from lack of oxygen? No, I would
dive into the water and rescue him without hesitation! I knew that we had
to give him every possible chance at life, so we begin our dive, I
thought.
DEFEAT
So I lay there that night, snug in my bed, and
thought of little Cameron, laying in his tiny hospital bed, my body aching
and exhausted from the labor and delivery just a day ago, and I thought to
myself; There's no way he can live through this, I'm going to lose my
baby. That night I found myself beginning to withdraw, to wither away. For
the first time in my life, I was having a crisis that I literally could
not bear. My mind began to wonder. I wondered if I died tonight, yes that
was it, if I died tonight, I could somehow leave a will or something,
something that would guarantee that my heart would go to him. After all,
the boys would still have my husband wouldn't they! But then reality comes
again, my heart would be far too large to fit into my tiny boy's chest.
Sometime in the night, defeated and exhausted, my eyes closed.
The
next morning I awoke with a sadness I had never known before. It was
there, sitting on the side of my bed, that I made a promise. The promise
was this--no matter how much it hurt, no matter what happens, or what the
doctor's say-even if we went to the hospital today and they said there was
no hope for Cameron, that he will die no matter what they try to do to
help him, and no matter how our hearts will be broken and our lives
destroyed--WE WILL LOVE HIM. For if he dies tomorrow, he will know that he
had a mommy and a daddy who loved him more than life itself, and a big
brother named Gabriel who was so excited at his mere existence, and lots
and lots of other people who loved him dearly, and prayed for him. He
deserved at least that much.
THE SURGERY
& RECOVERY
So for a week, we
waited for the day of his first surgery. Every morning we would drive for
2 hours to go to the hospital to see him, stay all day, and then drive
home. It was totally exhausting. And during this time, Cameron was on so
much life support that all we could do was hold his tiny hand and rub his
soft little head. My arms ached to hold him. And then the day came, we
came in that morning and they told us it was time. He would be the surgery
teams' first case that morning, we had only a few minutes. They took
him off the breathing machine, and let us take turns holding him. As we
sat there in the rocking chair they gave us, I could see the sun rising
over Central Park. It was the first time we were allowed to hold our
son since the murmur was heard, the weight of his tiny body felt so good
in my arms, and even though he was heavily medicated and so slept the
whole time, it was heaven, and when they came and took him from us, it was
hell.
Cameron’s surgery was long, very long. We were comforted by
the Cardiology Fellow who was following him, Dr. G. (You know who you
are). He had a sort of calm confidence, and light-hearted spirit that
moved and eased us. When the pack of doctors would come ‘round, we would
look to him. Cameron did well with his surgery, as he did well with the
rest of them. We have certainly had our share of complications along the
way - in fact, I think we may have had every complication out there i.e. :
Staph Infections, feeding problems, serious illnesses etc. And it seemed
to us for a long time, that every time a doctor would come around, they
would have more bad news for us, usually a new defect or problem found
that we didn’t know about yet. Each time they would say, this isn’t
necessarily a death sentence, but it sure complicates things. But he has
somehow managed to pull through them all.
The road we travel is
long and full of bumps, potholes, and deadly cliffs to the sides, and we
are only at the beginning, but this is the road we have chosen, and we are
thankful to be here. So many people we have met along the way are torn
away from the road, their only reason for being there having been lost,
and so yes, if you ask, we are thankful we are still here. We gladly
trudge through any obstacles that come our way, and do not regret one
single decision we have made. To date, Cameron has had 3 open heart
surgeries, 8 cardiac caths, a Gastrostomy Tube Placement surgery, a
sedated MRI, and countless procedures, pokes and doctor visits. When he
turned 6 months old, he had only been home for a total of 2 months. What
is he like?? If he were an adult, most likely he would be bitter,
depressed, and withdrawn. But not our Cameron-he's a fighter, he's
stubborn, he's a great bratty little brother, he loves to wrestle, he
loves to smile, he loves to be loved. All the time he spent hooked up with
tubes running down his throat, in his nose, etc...you would think he would
be traumatized. Well, think again. His comfort, sleepy time thing is a
cloth hat which has a bug print on it. Well, it has a red nylon cord meant
for going under the chin to keep it securely on his head....which instead
he uses to put up his nose, in his ears, and to rub the front of his
throat. Those sensations were there for much of his early infancy, and
they are a comfort to him. So you see, he is not an unhappy, traumatized
child. He is a wonderful, adorable, affectionate, and yes, sometimes
bratty little two year old, who is scary smart!
~ FOOD FOR THOUGHT ~ As late as the
1980's, people picketed and protested, saying that the heart could not be
operated on because the heart contained the soul. When that didn't pan
out, they said the soul was in the mind, and if you were to ask someone
who has had brain surgery, I bet I know what the answer to that would be.
Is not the soul of a man all encompassing, all surrounding, saturating
every cell, every thought, every emotion?? Was Elvis evil
because he swung his hips when he sang and danced? Seems funny
now, huh? There is a lot of controversy lately over stem cell research.
People say it's playing God - that is the most egotistical thing I have
ever heard. Humans cannot play God, be God, or mimic God, we may be able
to read the blueprints, but we are far from writing them.
Someday,
Cameron will need a heart transplant, doctors say all children with HLHS
will. Do you know the complications of organ
transplantation? Read up on it, if you're not. It is far
from a cure-all. My dream is that these wonderful doctors will be
able to grow my son his own heart, the one that he deserved to be born
with, using his own stem cells, having no possible risk for rejection. We
have been following Stem
Cell research, in the hope that this "science fiction" science will
some day save our son. So let's not be afraid of medical advances, after
all, if it weren't for medical advances, we wouldn't be looking at
Cameron's smiling little face and bright eyes today. And we wouldn't know
that he loves to play hide-and-seek, that he cracks up if someone gets
hurt, that he loves to sit in the dirt and put it down the front of his
diaper and in his hair, and then laughs about it, and that if you blow
your nose, he'll think you are crying, and come over to you and sit in
your lap, look right into your eyes, and say "what's wrong?" or "are you
ok?".
Cameron is now doing great!! He is in line for another
surgery, however, when this surgery will be done, is unknown. There are
new techniques and revisions being done for this staged correction, and
because of this, there recently have been some questions as to the optimal
time frame for the final stage. Cameron is watched closely by his
Pediatric Cardiologist, Dr. Cooper, and as of right now, he is doing very
well from a cardiac standpoint, and showing no need for more surgeries any
time soon. Who knows what the future holds for us, and of us?
For now, we'll greet each new day with a smile.
|
No one would ever have
crossed the ocean if he
could have
gotten off the ship in the
storm
~ Charles Kettering
~ |
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