Three years ago today (May 15, 2005 )our "true" journey
into the world of CHD's began. I say "true" journey
because we had Olivia who had a small ASD, so we had been the
pediatric cardiologist, echo, EKG route, but had been told to
take her home, let her grow and not worry about it - so that's
what we did. So, please indulge my multi-part update as I reminisce
about where we have been as we get ready to jump back in this
world again in three weeks.
Three
years ago I woke up with my healthy 9 day old baby girl. It was
a Wednesday. Looking back it is easy to see that she wasn’t
a healthy baby girl. But we had been to her doctor on Monday,
when she was a week old. She had a clogged tear duct, just like
her older sister, and I just wanted Dr. Sullivan to see her anyway
as she is a wonderful family friend, too.
When
the nurse weighed her we were surprised to see how much weight
she had gained in a week. I thought maybe the scale was wrong,
and of course it seemed like all she DID was eat, so it didn’t
worry me too much. Dr. Sullivan examined her that morning, pronounced
her healthy and listened really intently to her heart because
of Olivia’s history. She didn’t hear any murmurs.
Her heart rate was a little high, but still within normal range.
So, I took her home.
The
next day, Tuesday, Olivia woke up with a double ear infection.
Back to the doctor we went. While there I mentioned to Dr. Sullivan
that I knew she had just seen Maddy yesterday, but I was concerned
that she was breathing fast. While we were there would she just
check her again? Of course she did, this time she said she did
hear a slight murmur and she went to get her colleague to check
her. He was the doctor who saw Maddy at the hospital after she
was born. He also heard the slight murmur and they agreed her
breathing was fast, but it could just be her body adjusting to
her newborn circulation. We would keep any eye on her, and if
I became concerned I was to call.
The
next morning was Wednesday, May 15, 2002. I got up early while
Maddy was still sleeping. Todd had gone back to teaching for the
remainder of the year and I woke Olivia up so her Papaw could
come get her to take her to preschool. Maddy and I spent a relaxing
morning. She was sleepy and didn’t want to wake up much
and was having a hard time latching on to nurse. She really didn’t
eat much and fell asleep as soon as we started. I laid her down
in her bassinet so I could take a shower while she slept.
When
I came out of the bathroom I peeked down in the bassinet to see
if she was still sleeping. It was then that I became aware that
even while sleeping very deeply, her breathing was very fast.
Her chest was rising and falling like she’d been running.
I looked at her neck and I could see the pulse pounding there.
I tried to rationalize this all away, knowing that babies have
faster respiratory and heart rates than adults, but I also knew
they should be slower when they were fast asleep.
To ease my worry I decided to count her respirations and take
her pulse. I counted her respirations a couple of times, and never
counted slower than 84 per minute. Now, I really couldn’t
remember what a newborns respiration rate should be while they
were sleeping, so that was a little worrisome, but not startling.
Then I went to take her pulse. That was the scary thing. I couldn’t
count fast enough to take her pulse. I thought I must be doing
something wrong. After all, I’m not a nurse, I’d just
had a lot of first aid training because it was required to teach
special needs preschool. So, I tried again, but it was just beating
so quickly that I couldn’t count fast enough.
It
was just after 8:30 in the morning, so I decided to call Dr. Sullivan
once again. I felt silly, I mean, I had just been to see her two
days in a row, but I just had this gut feeling that something
wasn’t right. I called and spoke with the receptionist and
told her what I was seeing. Dr. Sullivan came to the telephone
and I kind of sheepishly explained why I was concerned. I apologized
for bothering her and told her I was probably over-reacting, acting
like a nervous new mom.
She
assured me that I wasn’t the “over-reacting type.”
She told me she wanted me to take Madalyn down to the emergency
room at Children’s Hospital. She told me not to rush, take
my time, but she would call ahead and let them know I was coming.
Okay,
so here I am home alone and trying not to panic. I called up to
the school so I could get a message to Todd what we were doing.
I was fine until talking to the secretary and then I just started
crying. I think that scared her and she ran and got Todd out of
class to come to the phone. I told him not to come home, I was
going to have my Dad go down with us and I was sure everything
would be fine. I would call him and let him know what they said.
After
we hung up, I called my Mom at work and told her, then called
my Dad and asked him to come pick us up and take us down there.
I woke Madalyn up and took her upstairs to get her dressed. I
remember picking her up and holding her close to me as we walked
back down the stairs and saying, “Maddy, don’t do
this to me. Mommy can’t handle this.” I wasn’t
sure what was going on, but I knew something was wrong.
Todd
called back to ask me to wait for him, he was coming home. The
three of us headed down to the hospital. I just remember praying
the whole time we were driving. I just wanted her to be okay.
We
got to the emergency room and Dr. Sullivan had called so they
were expecting us. The triage nurse came out and listened to her
heart. I’ll never forget the look on her face. She pulled
us back into a room and started calling for a “trauma”
room. Now, I had watched enough “doctor” shows on
TV to know THAT wasn’t a good sign!
Before
I knew it, Madalyn was laying in one of those infant beds they
use. There were doctors and nurses all around. They did an EKG,
an echo and a chest x-ray first. It didn’t take anytime
at all to get those done. I remember standing beside her and holding
her tiny hand as they did the echo and thinking, “This is
it, from this point on our lives will never be the same.”
I asked the emergency room doctor what she thought. She said,
“We think it is her heart. We have a pediatric cardiologist
coming down to look at her.” I asked, “Can you fix
it?” and she answered, “I think so.” That was
what I wanted to hear. During the drive down, I knew it was her
heart. I still didn’t know anything about heart defects,
despite Olivia having one, but I was sure it was her heart. My
greatest fear had been that we would get down here and they would
tell us it was her heart and there was nothing they could do for
her.
The
cardiologist came down and examined Maddy. He said, “She
has a heart defect. Do you have a family history of defects?”
I replied, “Well, her older sister has one.” If things
hadn’t been so bad right then, the reaction of all the medical
personnel would have been comical at that time. They all just
stopped what they were doing and looked at me like I was crazy!
I told them that it was just a small hole, and I couldn’t
remember the name of it (what a great heart mom I was!).
Pretty
much everything else is a blur. I remember them trying to get
IV’s started on her. That was awful! She screamed and screamed.
I just wanted to pick her up and run away. I wanted to rewind
to that morning when I had a healthy baby girl and we were at
home, and she was just mine. She didn’t belong to this world
of heart monitors and IV’s and medical people rushing around
her. They finally got IV’s started and she had screamed
so much she was exhausted and had fallen asleep.
The
cardiologist pulled us aside. He drew two pictures on a piece
of paper. The first one was the “healthy heart” picture,
then he drew another one and started putting holes where there
shouldn’t be holes and crossing out areas of the heart that
should be there. He told us Madalyn had a severe heart defect
called Tricuspid Valve Atresia. She was missing a valve on the
right side of her heart, and because of that her right ventricle
had not developed so that it was basically useless. In order for
her to live, she would have to have a series of three surgeries,
and she would need the first one right away. Then he told us when
she was older she would have to have a heart transplant!
I
think the only thing I really absorbed from that conversation
was the word “transplant.” I wanted to scream! I felt
sick to my stomach, and to top it all off, my milk had come in.
Madalyn hadn’t eaten well that morning, and with all of
her screaming my shirt and the front of my pants were now soaked
through.
I
had to leave. I asked to use a phone and I called my mom at work.
I broke down sobbing. I told her I didn’t know what was
going on, but it was bad. I told her Madalyn would have to have
surgery right away, and she would still need a transplant when
she was older.
I
came to find out that that morning, Madalyn was in congestive
heart failure. She was not “blue” because her pulmonary
valve and artery were fully formed, so that was why she didn’t
appear symptomatic at birth. Unfortunately, her lungs were being
flooded with blood because of the insufficient circulation caused
by the missing right ventricle. I later found out her heart rate
when we arrived was 250!! No wonder I couldn’t count it
– that is 250 beats per minute! Madalyn was admitted to
the Pediatric Intensive Care Unit (PICU). We were under a constant
barrage of information that we were trying to process, and what
it boiled down to, was Madalyn was going to be stabilized and
then have surgery the following Monday.
As long as I live I will never forget the emotional trauma of
that first day, and the days afterwards. We were just so lucky
to take our baby back home again 22 days after that initial emergency
room visit. She survived her first surgery, a blood clot forming
in her right ventricle, and recovered well enough to go home with
us. Four months later we would go through all of this again as
she had her second surgery, the Glenn, on October 7. Fortunately
that was only a five day stay.
And
now, here we are, preparing to enter this hospital world again
on June 7. The past three years have gone so quickly, I can’t
believe it is time to do this again, I’m just looking forward
to getting it over with and having my baby home again. We’ve
learned a lot in the past three years, too. We’ve learned
that we didn’t really like that first cardiologist. All
he kept wanting to tell us were the things Madalyn would “never”
do. As in, “She’ll never play sports, she’ll
never be able to have children, she’ll never function as
‘normal’ children do.” We switched cardiologists
and found out that you “never say never” to these
heart kids! They will continually surprise you. Madalyn does and
will function like a ‘normal’ child. She may never
need a heart transplant. Those are not “guarantees”
for our heart kids, and who knows what the future of medical technology
will bring to them.
Most
of all we have learned from and learned to love the incredible
network of people that Madalyn has brought into our life. From
the surgeons, doctors, nurses and staff at Columbus Children’s
Hospital, the parents of other heart children we know “in
real life” and “on the net,” the members of
our church and how they have rallied around us, and the love and
support of strangers. Mostly the love and support of our wonderful
family. It is an amazing journey, and one we are going to continue
for a long, long time!
Thanks
for putting up with my meanderings down memory lane! Lots of love,
hugs and prayers to all of you!
Barbara
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