My name is Gena Taylor. I am 21 years old. I am a stay at home mom. I have a wonderful husband, Jared. We have been married for 4 years. We are blessed with two precious daughters. They are Alyssa Michelle and Emily Grace. Alyssa was born January 2, 1998. Emily was born June 4, 2001 and went to heaven July 24, 2001. Emily’s story starts on an early October morning. I woke up early so that Jared would be there when I took the pregnancy test. Sure enough, after almost a year of trying to conceive, I was pregnant. We were so happy. It was beyond words. We got what we had been waiting for. Our family would soon be “complete”. We got doctors appointments set up right away. Everything was going great. That is until my 21st week of pregnancy. We were so excited about going in for the ultrasound. We would soon know if we should buy girl or boy stuff. I never once thought anything could be wrong with her. She moved around more than Alyssa ever did. Jared, Alyssa and my mom came with me for the ultrasound. It was February 6, 2001. That is the second worse day of my life. First thing we found out was that she was a girl. We were happy. However, during the ultrasound, I noticed it was a little different than the one I had with Alyssa. The lady doing the ultrasound was telling me what was what and taking some pictures and telling me what she was doing the whole time. I remember her saying once, “Now, I’m taking some pictures of her cute little heart here.”. That caught my attention, but I blew it off. How naive was I? Afterwards, we went out to eat lunch and went to a few stores. We didn’t make it home until dinnertime. I was starting to make dinner when the phone rang. It was my mother-in-law, Paula. (For future reference, she works at the ob/gyn clinic) She asked where we were today and what we were doing. The phone call was rather short. She acted a little different, but, again, I didn’t think any more about it. A few minutes later, Paula and Haskell (my father-in-law) pulled up in the driveway. Yet again, this was odd seeing that she just called and didn’t say anything about coming over. It would come to be that I would never forget this day. Not for just getting to know that she was a girl, but for the worst news I’d ever heard. (Up to this point) Jared was outside working and she had asked him to come in because she had to talk to us. I should have known something was wrong. Then the words came. She told us that there was something wrong with Emily’s heart. They weren’t sure what exactly. They thought that maybe it had a whole in it. I was so shocked. I didn’t want to believe it. I couldn’t stop crying and the wait till the next day seemed so long. I went in the next day for another ultrasound. They couldn’t tell me if my baby would live or die and sent me to a specialist. It turns out that the specialist would be a two-hour drive from where I live. I would be going to the University Hospital in Oklahoma City. (Now OU Medical Centers) My first appointment was on February 15, 2001. I was so scared. It turned out that she didn’t just have a whole in her heart. In fact, they could only see a small portion of the left atrium and wasn’t sure if there even was a left ventricle. But her heart problems didn’t end there. Her aorta was messed up and they suspected she had Transposition of the Great Vessels. They thought she had Hypoplastic Left Heart Syndrome (HLHS). I was given the option of an abortion. I couldn’t do that. Not when there was a chance for her to make it. Deep down, I was praying that they were wrong and when she was born she would be fine. They told me that she had a good chance of making it. There were surgeries they could do to correct her heart. I was pretty optimistic myself. But I hated that there was anything wrong at all. I was very afraid of loosing my precious baby girl. I had to go to the specialist once a month for a level two ultrasound. Every time I went to buy her an outfit or a blanket, I wondered if she would ever get to use it or wear it. This was supposed to be a happy time for me. I was suppose to be happily buying things for my baby. Instead, I was wondering if she would live. I tried to stay optimistic yet keep in the back of my mind that there was a possibility she would die. That is a very tough thing to do. We could play games with her. We would put our hand on her , move the hand and she would follow it. It was so cute. They had decided to induce me two weeks early to make sure I had her there. They needed to have a cardiac team close by. I went in at 1:00 a.m. on June 4, 2001. They soon started the drip to induce me. It took , what seemed like forever, to get to a 4. Then it went really fast. After just a few pushes, Emily’s heart rate started to drop. They needed to get her out fast. It was too late for a c-section. They used forceps. It wasn’t no time and she was out. She was finally here. Born June 4, 2001 at 12:02 p.m.. She weighed in at 5 lbs. 6 oz. and was 18 3/4” long. She was beautiful. She wasn’t blue. She was a beautiful light pink. At first, when she came out, I didn’t hear her cry. I asked them, “Why isn’t she crying?”. They told me not to worry and a second later I heard her cry. It was the most beautiful sound. My husband and I got to hold her for a few minutes and then they took her away for an echo on her heart. They said it should take about 45 minutes. Two “hours” later they came to tell us the news. Her heart wasn’t what they thought it was. In fact her pediatric cardiologist (who has worked there for over 15 years) had never seen a heart like her’s before. He couldn’t give me a classification for it, much less a name for her heart defects. They told me that her heart was working. They were amazed. They didn’t know why her heart was working, considering all the heart defects. (I believe this was our miracle)They told me that she would have to have at least 3 surgeries to correct her heart, but they could wait for now. I still don’t know all of her heart problems, but I’m working on that. This is what I do know. Let me start out by saying that I don't know if I'm getting this all right. I can barely decipher the doctors writing. Ok, it was kind of like "Hypo-plastic left heart syndrome" (HLHS), but with more complications and more complex. She had "Criss crossed av connection", "Double outlet left ventricle"(DOLV), Double outlet right ventricle"(DORV), (2)"Atrial septal defect"(ASD), "Patent foramen ovale"(PFO) "Large Ventricular Septal Defect"(VSD), "Pulmonary stenosis", "Severe pulmonary branch stenosis", "small mitral valve". It's really rare and there's so many things wrong with it. Her pediatric cardiologist said that her whole heart was twisted and pointing in many different directions it shouldn't normally be plus there were things in the wrong spot and going the wrong way or not there at all. Like, HLHS, which in case you don't know, is in her case where the left ventricle consisted of just a small valve which happened to be behind her right ventricle and her left atrium was small, misshapen and behind her right atrium. The atriums were also pointed the wrong ways. I don't think any part of her heart was "normal". After birth she didn't declare herself. Her heart wouldn't tell them if she would need a shunt or a band around her outflow tract (which was too large) They were waiting for her to declare herself on one of that heart defect. It was a waiting game. They wanted her to get as big as possible before they did surgery. However, over the next 34 hours she wasn’t allowed to eat. She had an IV, but they didn’t want her to eat just in case they had to do surgery. She had to stay in a special nursery. She was hooked up to a lot. (Or so I thought at the time) However, when she did get to eat, she ate like a little piggy. ( I breastfed) They told me that was a good sign. Sometimes when a baby has a heart defect, they get tired while eating. I had to wake her up to feed her every two hours. At first, she didn’t even cry when she was hungry. They told me they would aim for her first surgery to be around 3 or 4 months as long as there were not any complications. After only 3 days in the hospital, she was released!!! I’ll never forget that day, it was June 7, 2001. We stayed an extra night in Oklahoma City. Mainly because I was scared something would go wrong. The only thing they left me with was ’if she turns blue to rush her to the emergency room’. Early the next morning, we took her home. I was so proud of my baby girl. She was such a fighter. After about a week, she would usually cry when she was hungry. She was staying awake longer and opening her eyes more. I loved every minute with her. I was probably a little over-protective. After she turned two weeks old, she gradually started eating less. Her pediatrician told me not to worry about it. That is also, when I found out that she had a genetic disorder called Velo-Cardio-Facial Syndrome. Neither, Jared or I have it. It was present at the time of conception. Their reasoning is that it just happens sometime. I held her all the time. I played with her, talked to her, sang to her. As I wrote when she 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!”. You see, I knew what I had before I lost it. From two weeks on out, I gradually watched my precious baby girl go down hill. Keeping the doctors informed all the way. I just held her helplessly. I can’t put into words how much I wished I could take it all away and make her healthy!!! It just wasn’t in my hands. I would lightly put my lips on her cheek and she would chase her mouth over to my lips. She would hunt for me, when she was hungry. It was darling. She would look at everything with such amazement. She made the cutest little facial expressions. The saying a picture is worth a million words, surely applied to her. Emily’s big sister, Alyssa, asked every day if she was big enough to play. Alyssa would help me give her a bath and change her diapers. Alyssa would help me sing to her and loved to hold her. Anytime Alyssa was talking near, Emily would turn her head towards her to listen. She was so incredibly precious. On July 18, I called her pediatric cardiologist because of her appetite and the bottom of her feet would turn blue. When I rubbed them it would go away, but they were turning blue often. He told me to come in the next day. So, July 19, I took her in to see him. (Emily had a problem with the amount of oxygen in her blood. In normal, healthy babies it’s in the upper 90’s. When she left the hospital when she was born, it was in the lower 90’s.) Her oxygen level was 79. He did an echo and told me that she would need to go ahead and have her surgery ahead of schedule. That between her top two chambers of her heart, there is a wall where there are two holes. In her case, this was helping her. She needed those holes. So, this meant they would have to do an open heart surgery and completely open that wall. They were going to do a couple more things while they were in there too. He told us that he wanted to do a catheter first. This is where they put a needle up the large vessel in her leg that leads to her heart, shoot in a dye while doing an ultrasound. This is to see in which direction her blood inside her heart is going, the exact pressures, etc.. We were to bring her in on the following Monday, July 23, for this. (That day was Thursday) Then her surgery was scheduled for Wednesday, July 25. They wanted to give her a day to rest in between. It seemed to be happening all too fast. I was so scared. I knew this day was going to come sooner or later. I just thought it would be later. I wasn’t ready for this and Emily wasn’t big enough. Saturday, Alyssa, Emily and I went to my mom’s house. Everyone came over that day. My sister, her husband and two kids were there, my brother, my mom and my dad when Alyssa, Emily and I showed up. We spent a nice day. The bottom of Emily’s feet had turned blue and stayed blue. I kept rubbing them but this time it wasn’t working. It would go away for a few minutes then come right back. She had one of her throwing up spells. (She threw up a lot and it would literally shoot out of her nose. It scared me every time. I had to get all that out of her nose.) After that she turned a grayish blue color. It didn’t stay long, but it gave us all a good scare. It looked like she had a little trouble breathing. I prayed it would just go away. She was acting different that day. I knew something was wrong. That evening she still hadn’t gotten any better. I was too concerned. I called the pediatric cardiologist, but got an answering machine, so I left a message. I kept thinking maybe I’m over exaggerating. After all, she just has to make it through the weekend! I kept telling her “Come on Emily, don’t make Mama worry. You can make it. Hang in there. You go to see the doctor on Monday. Don’t do this now!!!”. I was so hung. I didn’t know if I should really call the doctors emergency beeper or not. Then the palm of her hands turned a light shade of blue. That had never happened before and I couldn’t rub it away. I kept thinking (more like hoping) I was just being paranoid. Just about that time, Paula shows up. She takes one look at her and says, “I’d go ahead and call his emergency beeper.”. That’s all it took. I got the phone and called him. I left him a voice message and a couple of minutes I got a phone call back. I told him what was going on and he asked if we could go ahead and pack some things and bring her in to the Emergency Room at Children’s Hospital “tonight”. I told him “yes”. He told me that she might need that surgery earlier. Jared, Emily and Alyssa were asleep. Emily was laying on Jared’s chest. I woke them up and told Jared what was going on.. It would take us two hours to get there so I started packing immediately. I was running around the house like a mad woman. I let Paula hold Emily so I could get things done faster. I called my sister to babysit and called my mom to tell her what was going on. My parents came with us and Jared’s parents had to pack and would be up there soon. She was hungry when she woke up but I knew I shouldn’t feed her in case they had to do surgery. Even though Emily was hungry, she was such a good girl on the way there. When we finally got there, the ER was packed!!! We got in and her oxygen level was in the lower 30’s!!! Soon, her pediatric cardiologist arrived and told us that she was a lot sicker than she acted. Emily was crying and wiggling all around. They had put oxygen on her and she kept pulling it off. I held her as much as I could while we waited to be transferred to the PICU. I still hadn’t fully realized just how bad it was. Here I was standing holding my baby girl hooked up to oxygen in the ER and I still didn’t get it. I was probably in denial. I held her as we took her up to the PICU. If I had only know that was the last time I would hold my precious little girl alive.... I would have tried to enjoy it a little more.... I would have given her a million kisses and held her so tight. If only I had known that was the last time I would hear her cry... I remember laying her down on the table and the nurses telling us what they were going to do and that I had to leave while they got it all done and they would call us back in there in about 15 minutes. They gave her an IV and hooked her up to a lot of stuff to monitor her. They kept her on oxygen and gave her something to make her go to sleep and to paralyze her. They also inserted a breathing tube. They did that so she could get some rest and stop pulling everything off. They wanted her body to just concentrate on her heart with no distractions. How was I to know, that I would never seen my baby girl’s eyes again. For, she never woke back up. Her oxygen level did rise a little, but not enough. At 11:00 a.m. (Sunday), they did the catheter. They had decided to do something called a “balloon” to open one of the holes in the wall.(previously mentioned) They thought it would be less risky than surgery and it may have held off the surgery at least by a few days. (Enough time for her to get her oxygen levels back to normal.) To everyone’s disappointment, it couldn’t be done. It turned out that the vessel in the leg they went through was wavy instead of straight, which made it very difficult to get in. Also, there wasn’t enough room to get the balloon through. They were afraid if they pushed it too hard they might make a hole in her heart and she could’ve died right then. After a while of decisions, they decided they would have to do the surgery immediately. They told me that without it, she would have a 0% chance of surviving. I wanted to give her every chance there was. I didn’t want to lose her. But she was still very sick and the surgery was more risky due to that. They took her to the surgery room at 3:20p.m.. There was a good chance something could go wrong and we’d loose her, but without it, she had no chance. Her surgeon kept on telling us that she was a very sick little baby.... However, I did not realize that he meant she was on death’s door. The whole time we were waiting, my mind was still in shock. I wasn’t comprehending the seriousness of this. “I kept thinking that this couldn’t be real. Could it??? She’ll be okay. She just has to be!!! The surgery is just a little early. That’s all.”. Around 7:00 p.m. Sunday evening, her surgeon (top in the state, top 10 in the US) came in to update us. He told us that there were some complications during surgery, but her heart was doing well. “She’s ALIVE!!! Thank God.” They accomplished everything they went in to do in surgery. The surgeon accidentally snipped her colon, but fixed it. He told us that he didn’t expect that to be a problem. But he noticed there was a lot of blood, so he thought maybe he had accidentally snipped something else. He opened her up all the way... My poor baby.... He found that the catheter must have went through the vessel at some point and no one realized it. They had turned it in to her IV. So, the fluids from the IV(blood, medicine and normal IV fluids) were draining into her tummy. He pushed it back through and fixed it. But it had already made her tummy swell a great deal. So much so, that when he went to put her heart back in, there wasn’t enough room. He had to drain some of the fluids first. He did get it back in and sewed her back up. Soon, they took her back to the PICU. It didn’t seem soon to me though. Her heart rate was too fast, but her oxygen level and blood pressure was stable. It was so hard to watch my sweet little girl lie there on the bed, hooked up to everything. I just had to keep in my mind that this was helping her. There were times when every one was very optimistic and times they weren’t. The first 6 hours after surgery was very critical. We prayed a lot. They said if she made it through the first six hours without any complications that she would be heading on her way to recovery. Six hours passed. We were all so excited! I thought this meant she would be okay. How wrong could I have been? She had one bad episode that night. Her blood pressure had went down real low and they were having trouble getting it back up. It scared us. The surgeon had told us that even though she couldn’t respond to us, that she could still hear us. We kept telling her not to give up and to fight. We told her how much we love her and couldn’t wait to hold her. He was only worried about an infection at this point and was ordering a brain scan for the ’next day’. This was a good sign to me. I thought this meant she would be okay. How wrong could I have been? Before this it was second by second, minute by minute. And now he was talking in days!!! Unfortunately, her tummy kept swelling. Her organs had started to swell too. Soon, everything was a “temporary” fix. The surgeon had told us that opening her back up was the last big thing they could do to save her life. The surgeon decided to open her back up on Monday. They opened her back up all the way and left her open. (There was like a yellow colored tape that you could see through over the opening.) Afterwards, I went back into the room. Her surgeon was still in there. He came back to me, put his hand on the small of my back and pulled me forward. I guess he wanted me to really “see” how serious this was. They were still draining fluids from her stomach. He told me that when he opened her back up he noticed that her liver had ruptured, but since it was so swollen in there that it clotted itself. Just to think that at one point, our biggest concern was infection. How naive... It was killing me to see my little baby laying on that table, cut from top to bottom!!!! I could see her intestines. They were even cute. I remember how one almost looked like a heart. I stayed in there and held her hand and talked to her a lot. I would kiss her sweet little head and wish so much that I could hold her. But there was so much hooked up to her and she was on so many medicines. The surgeon told me that there was a 50-50 chance she would live. Of the 50% chances that make it, they never leave a normal life. She would be in the hospital with constant medical attention for the rest of her life. There had been too many complications and her oxygen had dropped severely low too many times. That’s when I started to feel her slip away... I was thinking,,, “NO! NOT MY BABY GIRL!!! SHE’S A FIGHTER!!! SHE’S GONNA MAKE IT!!! HE’S WRONG, SHE CAN’T HAVE BRAIN DAMAGE, I NEVER REALLY GOT TO KNOW HER!!!!!”. Monday was a very up and down day. The medicine would keep her stable but as soon as the medicine ran out, she would go back downhill till she got some more. She wasn’t becoming stable on her own. Early Tuesday morning she was falling fast and nothing they did helped her. When they did all they could do, including compressions for 45 minutes (Which I witnessed 30 minutes of), the surgeon came in to tell us the bad news that I already knew. It was around 6:00 a.m., the surgeon told us, “I’m sorry. She didn’t make it. The compressions really weren’t working and I thought she had been through enough and so have yall. It was my call and I told them to stop the compressions. I’m so sorry I couldn’t save your baby. I wish I could’ve done more to save your baby’s life.”. As he walked out the door, I saw a tear in his eye. My life ended that day, or so it seemed. Her life did. My life had been changed forever and I’ll never be the same person. I yelled, I screamed, I cried so hard I about passed out. It felt like someone had ripped out my heart. After, we were able to hold her and say our “good-bye’s”. They had wrapped her in a peach blanket and had a peach ribbon around her head. There was two Polaroid pictures laying with her, two pieces of paper that had a poem on each and her footprints on one and her handprints on the other, and a lock of her hair. She was dark purple. I barely recognized my precious baby girl. I picked her up. She was heavy!!! She use to way just 6 lbs. 10 oz. fully dressed. I sat down in the rocking chair with her in my arms, crying my eyes out and trying to talk to her. I told Jared that I wanted us to be alone with her for a moment. He bent to his knees to be beside us. This would be the last time to hold her. I told her how much I loved her, that I understood that she had to go, how much I miss her and that she’d always be with me. All of a sudden it hit me that she wasn’t there anymore. I was sitting there holding her dead body, not her. I handed her to Jared, who said his good-bye’s. Soon the others joined the room. She was passed around the room. Jared and I decided against an autopsy. We thought that her body had been through enough. Her organs had swelled so much that they had put so much pressure against her weakened heart that it could no longer beat. That was enough for us. Jared and I held each other as we walked out of the room. We talked to people about where to take her. My dad was the last one with her. He had to set her back down on the table and walk away. He said that was the hardest thing he has ever had to do in his life. I couldn’t have done it. The time after that is pretty much a blur. We had a lot to do and a lot of decisions to make in a short amount of time. Her funeral was July 27, 2001. She’ll be loved and missed always and will never be forgotten. I believe it would have took a miracle to save her and she already had hers. She lived for 7 weeks. If I knew what I know now, before I got pregnant, I would have still had her. I wouldn’t trade that time with her for anything. She was very much wanted, but I guess, God wanted her more. She was my baby girl with little chance. She was a victim of circumstance. I learned more in those 7 weeks than I had in my entire life and will ever learn. I learned that in life, it isn’t the things that happen to you that matter. It’s what you do about them and what you learn from them. Thank you for letting me share Emily with you.