My Life

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.

Everything was 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. 

February 15, 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 about. I 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.

Mommy wrote 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 saw me.

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. 

On 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.

Mommy Remembers

Emily was 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...