My Mommy and Daddy
tried for a little over a year to get pregnant with me. They
really wanted me a lot, so that early October morning they found out I
was in Mommy's tummy, they were so excited!! I already have a
sister named Alyssa. She was born on January 02, 1998. Mommy
and Daddy had wanted to have two children, so I made the family
complete. To meet my siblings, please click on their names at the bottom
of this page.
going great until Mommy's 21st week of being pregnant with me.
February 06, 2001, Mommy, Daddy, Alyssa and my Granny went to the doctor
office for a routine ultrasound. While at the doctor office all
went well. They all found out that I was a little girl!
Afterwards, we all went out to eat and celebrate. Mommy still
didn't know that I was holding secrets of my own. That evening
when Mommy was cooking dinner, the phone rang and it was my Meme.
My Meme works at the doctor office where my Mommy goes. Soon, Meme
and Papa came over. They already knew my little secret and had to
tell my Mommy and Daddy. They asked Daddy to come in from working
outside and then the most horrible words Mommy had heard so far came...
"There's something wrong with the baby's heart. They don't
know what yet, but you need to go in tomorrow for another
ultrasound." Meme said. The doctors thought that I might have a
hole in my heart. This news broke my Mommy's heart.
She cried a lot and was so scared for me. But she knew she would
do all she could to save me. The doctor sent my Mommy to a
specialist in Oklahoma City. That's a two hour car trip and I made
my Mommy need to stop to use the restroom a lot.
2001, My mommy went to the specialist. Mommy was so scared of what
they might find out. It turned out there was a lot more wrong with
my heart than the other doctors had thought. These doctors weren't
sure either though. They thought I might have "Hypo-plastic
Left Heart Syndrome". In that case, they told my Mommy
there was about a 70% chance of me making it. They would just have
to do some "re-plumbing". Mommy really didn't want to
believe it but was pretty optimistic that I would make it. This
made Mommy fear a lot. Mommy had a new fear that she had never had
before. She never thought anything could go wrong with babies and
if they did it was extremely rare, but she was wrong. Every time Mommy went to buy an outfit for
me, she wondered if I'd get the chance to wear it. The doctors
told her to be positive, but to keep in the back of her mind that I
might not make it. (Just so it wouldn't be a complete shock if something
went wrong.) But Mommy was in a bit of denial. Still, I
could feel Mommy's fear growing as she learned more about what they had
to do to save me and what the chances were of surviving and leading a
"normal" life. After
numerous dr. appointments, they finally decided to induce my Mommy a
couple weeks early that way I could be born with their pediatric
cardiologists standing by.
At 12:02 p.m. on
June 04, 2001, I was born. I weighed
5 lbs. 6 ozs. and was 18 3/4 inches long. After they wiped me off
some and did what they needed to, they handed me to my Mommy. I
was a little small, but my APGARs were 9 and 9. Mommy said I was beautiful. Daddy got to hold me too. But
soon they took me away to do an echo on my heart. They told Mommy
and Daddy it should take about 45 minutes, but they were wrong.
After 2 hours of trying to figure out my heart, they came back to them
with the news. My pediatric cardiologist had worked at that
hospital for 15 years and never seen a heart like mine. In fact,
by looking at my heart with all the things wrong with it, they didn't
even know how it was working. But it was working and that's all Mommy and Daddy
cared about. They kept me in the PICU. So, if Mommy wanted
to see me, she had to come to me. The doctors had me hooked up to
monitors and I had an IV. At first they wouldn't let me eat and I
was getting really hungry. They were waiting to see what my heart
was going to do. Either I'd need a shunt or a band, but my heart
didn't want to tell them. So, they finally let me eat. When
Mommy nursed me the first time, I ate a lot! Even though my body
was so very tired, I nursed for 30 minutes! The doctors were so
impressed. Mommy and Daddy were so proud of me. After only 3
days, I got to leave the hospital. The doctors said I needed about
3 open heart surgeries, but they could wait for now. I sure was
glad of that. I think everyone was. They said as long as
there weren't any complications my first surgery was to be when I was
about 3 or 4 months old. They wanted me to get as big as I could
first. We went back to this hotel where we stayed the night.
Everyone was so proud of me! They thought I was such a little
fighter. Mommy didn't get much sleep cause she was so scared
something would happen and she wouldn't know what to do. Even
though they taught Mommy and Daddy both CPR before they left the
hospital with me. The next
morning I got to go on a 2 hour trip home. Naturally, they had to
stop and feed me on the way home. I liked to have things my way.
I wasn't sure what this 'home' thing was. Everyone was so excited
that they were going there with ME. Soon, we were at this cozy little place where I had my own room.
I was hardly ever in my room though, I really don't understand that.
But it didn't bother me any cause I slept with Mommy and Daddy. I
soon realized that this was the "home" they were talking
really loved to sleep on my Mommy's chest. That was the best.
Everyone always held me and I could feel how much everyone loved me.
They would sing to me and play with me and Mommy had some strange thing
in front of her face a lot that made a bright flash.
I had a
lot of doctor appointments and I really didn't like them. After I
was about 2 weeks old, I didn't have the strength to eat very well.
Gradually over the next several weeks, I ate less and less. It was
scaring my Mommy and making her nervous. My
heart was diagnosed as: Criss-Cross Heart, Complex Double Outlet Right
Ventricle, D- Transposition of the Great Arteries, Restrictive
Patent Foramen Ovale, Hypo-plastic Left Ventricle, Large Ventricular Septal Defect,
(2)Atrial Septal Defects, Sub-Pulmonary Stenosis, Hypo-plastic Right
Pulmonary Artery, Hypo-plastic Left Pulmonary Artery, Right Aortic Arch
with abnormal branching pattern, coronary artery anomalies and Severe Mitral
Valve Stenosis with mitral valve hypoplasia. (For more information on heart defects,
please visit here.)
Let's just say that my heart was twisted and turned, pumping wrong and
not complete. But the love that came from my heart was the purest
ever seen. It was also when I was about 2 weeks old that my 'other' little
secret got out. Mommy got a call that told her that I had a
genetic disorder called Velo-Cardio-Facial
Syndrome. Mommy had NO idea what it was, she had never even
heard of it. Mommy was learning a lot with me, but a lot she
didn't want to learn by me having to deal with so many problems.
things down from time to time and she wrote this when I was 5 weeks old:
“We are so lucky to have such a beautiful baby girl! We love her so
much! Personally, every second of every day, I am grateful to have her.
I know what I have and plan on and am deeply enjoying every moment!”.
As you can see, my Mommy didn't have to lose me to know what she had.
Mommy worried a lot and she watched my health gradually deteriorate,
keeping the doctors up to speed the whole time. She really felt
helpless a lot. Mommy would've done anything to take all my
problems away, but it wasn't up to her. When I was hungry, Mommy
would put her lips to my cheek and I'd turn my head and try to catch
those lips. I loved to just stare at my Mommy and I'd have to say
she liked looking at me too. Everything was new to me and Mommy
could see the amazement in my eyes and she said I made the cutest little
facial expressions. Mommy was always telling me how much she loved
me and how precious and beautiful and strong I was. Mommy really
made me feel special. Mommy said that I made the whole room light
up when I came into one, but I saw everyone's faces light up when they
On July 18,
Mommy was really worried about me and called the doctors. My
circulation wasn't doing to well and my feet were turning blue and I
wasn't eating very well at all. The doctor had them bring me in
the next day. My blood oxygen level was low and so they did an
echo again. You see, there was two holes between the top two
chambers of my heart. But I needed those holes to help my blood
flow and one of them was closing, depriving me of much needed oxygenated
blood. So my doctor decided that I couldn't wait till I was 3 or 4
months old to have my first operation, I needed it now. So, they
set up an appointment for Mommy and Daddy to bring me up there.
The doctors wanted to do a catheter first, so they told Mommy and Daddy
to bring me back on July 23(4 days later). They would do the
catheter on that day, give me some time to rest, then do the surgery on
July 25. Mommy got really scared. She knew I'd have to have
the surgery sooner or later, but she wished it was later when I was
bigger. But I had to have things my way. The Saturday before
I was scheduled to go back to the doctor, Mommy, Alyssa and I went to
Granny's and spent a nice day over there with most of the family.
Daddy couldn't be there cause he had to work, but I know he wishes he
could've spent that time with us. While over there, I threw up and
I was having a really hard time catching my breath and turned a grayish
color for a minute or so. Then my feet turned blue and stayed
blue. Mommy was really starting to get worried. I could see
the panic in her eyes and I wish I could have comforted her, but I knew
that in time, perhaps a lot of time, she would grow to understand. Then the
palms of my hands turned blue and my lips were a darker color than
usual. When Mommy got home and I still wasn't any better, she
called my doctor, but only got his answering machine. Mommy was
debating on calling his emergency beeper. But she was so scared.
She wasn't ready for any of this. Meme came over and helped her
see that I really did need to go to the doctor. So, Mommy called
his emergency beeper and shortly received a call from him. Mommy
told him what was going on and he told her to go ahead and bring me in
that night. He said that it sounds like she doesn't want to wait
for that surgery. I was sleeping on Daddy's chest and Daddy was
asleep too. We looked very peaceful laying there sleeping and Mommy
hated to wake us to take the two hour trip to the emergency room.
But knowing she had to, Mommy woke us up and told Daddy what the doctor said.
Since it was a 2 hour drive, Mommy had to pack really fast, call Aunt
Dyan to baby-sit Alyssa and call Granny and Papa. After we were
packed and ready to go, Meme went home to get Papa and their bags
packed. They were to meet us up there in the morning or late that
night. Mommy, Daddy, Alyssa and I headed over to Aunt Dyan's,
where we dropped off Alyssa and met Granny and Papa, who led the way to
the hospital emergency room. I woke up on the way there a
little hungry, but Mommy did the right thing by not feeding me. We
finally got to the ER and things went pretty fast from there.
Mommy was scared, but didn't know just how bad things were. I
wasn't happy at all, I cried almost the whole time. I was throwing
a fit, but Mommy tried to comfort me. My blood oxygen level was
extremely low and I didn't feel too good. They put some plastic
things in my nose that gave me oxygen and I really didn't like that.
I tried pulling it every chance I got. Mommy got to hold me as we
walked to the PICU. Mommy didn't know, but that was the last time
she would hold me alive. Had she known, I know my Mommy would've
given me a million kisses and held me so tight. But had she known
how it all would go, she might have done a lot different. Mommy
was trying to get me not to cry, but she didn't know that was the last
time she'd hear my voice. Mommy had to leave me on the table and
leave while the nurses tried to help me. I was sad to see Mommy
go, but I knew she was only doing what she had to. The nurses gave
me something to sleep and make it to where I couldn't move, put me on a
ventilator, gave me an IV and hooked me up to some monitors. They
were trying to make my body just concentrate on my heart. My
family went through a lot. First I had a catheter to try to fix my
heart, then when that wasn't possible, open heart surgery.
Everyone was praying for me. Mommy wanted so badly to take my
place, but that wasn't possible. There were some complications and
I just wasn't getting any better. After some time, the doctor told
my Mommy that there was a 50% chance that I would make it, but even if I
did make it, I would never lead a normal life and I'd need constant
medical attention for the rest of my life. This broke my Mommy's
heart. She felt so cheated and felt that I had been so cheated. Mommy was still in a bit of
denial for a while. Then Mommy realized I couldn't stay with her.
I'm glad she realized that I was going to a better place where my heart
would be perfect, I would have no pain and I would be at peace.
She never said the words out loud, but I could hear her. She told
me it was okay to go, that my body was just too weak and my soul much
too strong. Mommy said she loved me and that she would miss me
more than I'd ever know, but I knew that this wouldn't be the last time
I'd see my Mommy. I could look down on her and watch over
everyone. In the early morning hours of July 24,
2001, I heard God calling me home. I didn't want to go and leave
my Mommy and Daddy and family so sad, but God promised He would help
them and give them strength and that one day, when it was time, they
would all see me again. My Great-Grandma came to pick me up.
My Great-Grandma and Great-Grandpa were in a car accident in went to
heaven 10 months before me. She showed me the way to heaven and
told me that she would help take care of me along with other family that
I had up there, until it was time for my Mommy to come. After the nurses got done cleaning and
taking my body off all the machines, they took two pictures and got a
lock of my hair for my Mommy and Daddy. Soon, everyone came in to
tell me their good-bye's. There were so many tears. Everyone
held me one last time and my Papa was the last. He placed me back
on the table and had to walk out the door. It was so very hard for
him, I know. The only thing that made it even possible was knowing
that my soul wasn't there anymore. Mommy and Daddy had a beautiful service for me on
July 27, 2001. There were so many flowers and bears and balloons.
Mommy read a poem for me and they released balloons. Mommy
realized that we did receive a miracle. I was able to spend seven
weeks with them when the doctors had no idea how my heart was even
working. We got to spend most of that time at home and not in a
hospital. Though my death is so hard on my Mommy, she would still
go through it all over again, just to hold me one last time. I was
a baby girl with little chance, a victim of circumstance. My
family has learned a lot through me. Mommy still talks to me and
looks at my pictures everyday. Memories and love never fade away
and you even get to take them with you to heaven.
Unfortunately, the pain never goes away either. Mommy and Daddy
will always have a 'missing' little girl. For when I went to
Heaven, I left a gaping hole in their hearts that only I can fill.
June 28, 2002, Mommy had a little boy. They named him Garrett
Scott. He weighed the exact opposite of me, 6 lbs. 5 ozs. I
made sure Garrett was a healthy baby boy that had lots and lots of
energy and would keep Mommy really busy so she wouldn't be so sad.
My little brother has brought a lot of happiness to my family and he
will continue to do so for a long long time. My big sister thinks
of me often and tells Mommy about her dreams when I take her
flying. Though my sister and brother bring extreme happiness to my
family, they still miss me terribly. They still look at little
girls that would be about my age and that gaping hole in their lives
seems eternal. But my family can now look back and see the good
times and smile that I was with them for a while.
beautiful. She was tiny and adorable. At birth, she weighed 5lbs. 6ozs.
and was 18 3/4" long. She only got to a weight of 6 lbs. 10 oz. and
21 1/4" long. She had the most beautiful smile. I remember how she
would make those cute little baby noises as I would feed her. I remember
how she hated to have her hands and arms under the blankets. I remember
how I use to hold her so close. I remember those precious facial
expressions she use to make. I never got to hear her giggle, but I'm
sure it would have been adorable. I remember how I use to love to just
watch her sleep. I love the way it felt when I would kiss her little
cheek and she would quickly move her mouth to mine when she was hungry
and the way she would search. I miss how she would get mad when I
changed her diaper. I remember how she loved and insisted on taking a
bath with me. I remember how her umbilical cord fell off at exactly 2
weeks. I remember how she loved to be held and usually insisted it. She
had a very large attitude for such a small little baby. I remember that
days before she died, she just outgrew some of her preemie outfits. I
thought she would never get big enough to outgrow them. Only because she
grew so slow. She would wake me up around 6:00am every morning
ready to get up for the day. I remember how she use to look at
everything with such amazement in her eyes. I remember how she looked
for me every time she heard my voice. I remember how I could sing
"Hush little baby" and lightly rub her head or hold her hand
and she would calm down. I remember that I learned the difference
between her cries to know what she needed. I remember how every day,
Alyssa would ask if she was big enough to play. I remember how Emily
would respond to Alyssa's voice too. I know I miss her terribly!!!! I
want to hold her and rock her and sing to her. I want to see her smile
again!!!! I remember the love I could see in her eyes. I
remember knowing just how precious she was. I remembered her
smell, her scent.....That has slowly left what was left behind. I
remember how the weight of her body sleeping on my chest and feeling her
breathe was so soothing. As the song goes, If I had one wish, I
wouldn't wish for money, I'd just wish for one more day with Emily.
But I know that it wouldn't stop there...
Just click on the line below.
Go to the store Mommy made for CHD Awareness!
Buy products there and SHOW your support and raise awareness of Congenital Heart Defects!