Sweet November Rain......

It is creeping closer. There are 25 days left until you turn(ed) 11. Eleven! Wow. Where do the years go? They keep slipping by so fast. Well at least when I use you as a reference point. Being a part of this blended family makes everything agonizingly slow. It's weird how depending on what you are looking at depends on how you view time. I remember the night before you were born. I took a belly picture. It is so weird because you are the only pregnancy that I did that with. Looking back on it I wish that I had done that with the other girls, but I always felt so big and awkward and well....just gross. I had hyperemesis gravidarum with all of you girls and it left me feeling the farthest thing from attractive. It was the least severe with you. Funny how that worked out. You know how all those women just "glow" when they are pregnant? Well that wasn't me. At all. Unless I was glowing from the sweat of the constant vomiting. But even then I was usually to dehydrated to sweat. Carrying a baby was literally hell on earth for me! And my brilliant self did it 3 times!!! People used to question why I had my tubes cut, tied and burned at only 22 years of age. I knew if I ever attempted another child that I would end up dead. Between you 3 girls, I had already covered all the bases in the "things that could go wrong" department. So the night before you were born, I proudly held up my shirt, standing there in a pair of your dads boxers and an over sized shirt, and I smiled. I had no idea that in less than 24 hours my world was going to be thrust upside down and shaken. My smile.....it's so naive.....so innocent. I was proud. I had made it dang near the full 9 months with you. I had extra ultrasounds and extra testing and everything said you were going to be perfect. It wasn't going to be a fight for you to live like it was for Carissa. We wasn't going to have to spend the first month of your life in the hospital. I was nervous but in all I was really excited to meet you. After all, you and I MADE IT! So at around 5am on Wednesday, November 29th, 2000, we headed in to Baptist Hospital where you were scheduled to make your appearance into this world at 8am via c-section. It was still dark outside. We discussed names. You were the only one that had a name when you were born. The other girls took awhile. Agreeing on something was never me and your daddy's strong point :) But you had a name. We were going to name you Chloe. But here you were about to be born and you still didn't have a middle name. So on the cold dark ride to the hospital that morning we tossed back and forth ideas until we finally agreed. You would be Chloe Mae Walker. It was so beautiful. I loved your name from the moment it was all pieced together. We got there and I shook with anticipation and fear. I was going to be awake for your c-section. This was all new to me. They gave me my epidural and piled on the warm blankets as I shook like a leaf. The doctor was a little late so you weren't born at 8am straight up as planned. They took me back. They prepped me. They made sure I was numb. I could feel them doing stuff to me but there was no pain. I just laid there quivering and silently praying. I locked eyes with Jason because I was to nervous to keep looking around. I felt exposed laying there on that table. Finally the doctor walked in, all scrubbed and ready to go. He started cutting. I could feel it but it didn't hurt. I guess my traumatic birth with Carissa had left behind some good scar tissue that needed to be cut through. It seemed to take forever although I am sure in reality it was probably only minutes. Finally at 8:23am, they pulled you out. You didn't cry right away. I only got to see you for a split second as the doctor held you over the divider. I thought he was going to drop you! Ha! You were all purple and slimy. They put you under the heater thing and made you cry. It was a sweet little weak cry but to me it was music. You were here and you were safe. I could close my eyes now. I think your daddy panicked for a moment as he tried to figure out how he was going to stay with me and go with you at the same time. He knew I would kill him if he didn't go with you so that was his final choice. It was a good one. He and the nurse took you down to the nursery where a bunch of people were waiting on the other side of the window to see you, including your sister. You were still purple. You had yet to turn pink. Not even close actually. You were more a shade of blue than anything. I wasn't there for all of this because I was still in the OR being sewed back up. But I guess your dad must of got to hold you up for everyone to see before being whisked away to the NICU. I guess during that brief glimpse your Aunt NiNi already knew something was seriously wrong and the look she gave my mom let my mom know too. Only they didn't know what. It would be a few hours before the doctors pinpoint what is wrong at this point. Also at this point, I was finally being taken into the recovery room where they pile more warm blankets on me and talk about my newborn. She was beautiful with her dark fuzz for hair. She weighed 6 lbs and 5 ozs and was 19 inches long. She would be my first and only daughter to have my dark hair. She had these dark bluish gray eyes and a whimper that was sweet instead of nerve wracking. I was laying there laughing with the recovery nurse when Jason and the other nurse came back.....without my baby. I got confused and serious real quick. They explained to me that they had to take you to NICU but to not worry because a lot of c-section babies had to go to the NICU. I guess they can get fluid and stuff trapped in their lungs. Something about not going through vaginal birth, and fluid and common......It was all supposed to make me feel better. But it didn't. I wanted to go to you right then. Jason went back. I had to wait until they moved me to my room and brought me a wheelchair. I probably would have just gotten up and gone down there if I could move my legs. I started staring at my legs, willing them in my mind to MOVE as the tears welled up in my eyes. This was supposed to be the baby that didn't have to go to the NICU!!!!! What seemed like days later (although reality says maybe an hour or so) they took me to my room. I demanded a trip down to the NICU. I can't tell you who all was there or what else was going on. I was confused. I sat in the NICU staring at you laying under your oxygen hood with a ng tube already ran. Sigh. I keep my cool as the nightmares of Carissa in the same place flashed through my head. We were asked to go back to our room so that doctors could come and talk to us. They came and said they had doctors come over from Children's hospital to come over and run some tests on you. Something was wrong but they didn't know what yet. The excitement of the morning was starting to fall away a little piece at a time. Shortly after, a doctor from Children's hospital was standing in my room. "We think your daughter might have a heart defect. It's pretty bad. We aren't sure what yet so we more doctors coming over to look and test now". I don't know what I felt at this point. I just remember staring at that doctor with my blank stare....willing myself to understand. I said ok and waited patiently for the next round of doctors. I was confused. Where was that healthy baby that I was supposed to have? There was an eerie quietness inside me as I waited. It's almost as though I was trying to convince myself this was all going to be ok while preparing myself on the inside for whatever was about to come. Hours passed and then finally there was a pediatric cardiologist standing before us. He was ready to talk now. "Remember how earlier we said we thought your daughter had a heart defect and that it was pretty bad?" "Yeah" was my very weak reply as I could feel that his next words were going to change our lives forever. "Well....your daughter does have a heart defect but it is about 3 times worse than what we originally thought. She actually has 3 major defects." He goes on to explain that in most of the cases they get one really major defect and then a bunch of other smaller defects that go along with it but in Chloe's case she had 3 MAJOR defects. He made sure to stress that to me. Explained to me that she also had no spleen at all and her liver was completely in the wrong spot. It functioned, but wasn't where it should be. As she grew there was a chance that her intestines could fall and rotate and if that happened then that would be intestinal surgery in the future. But for now they needed to take her back to Childrens with them because she needed open heart surgery. NOW. Only problem is, he explained, they had never had a case like hers before. They weren't sure how to proceed. All they did know was that if they didn't move quick, she would die. They already had the medi-flight ambulance on its way to pick her up and he was headed back to the hospital to pull together a team so that they could video conference with some of the best doctors in the world and come up with a plan for my baby. The room is spinning at this point and I am just staring at the doctor as he asks if I understand. Yes i said. And no. What the hell just happened??! I ask him about a heart transplant (how the hell did I move into survival mode so quick?! Heart transplant?! What?!) (P.S. remember this question for wayyy later down the line). He said no. That her best chance would be to fix the heart she was born with. I said ok, signed some forms, and quickly made my way back to where Chloe lay in the NICU. A nice nurse looks at me with deep sympathy. She snaps a couple of Polaroids for me and leaves them. Medi-flight will be there soon to take her away. She's not even half a day old! There wasn't even time for picture taking during the chaos of the morning. I stand by her bed with my hands on her, big giant tears sliding silently down my face. The doctor that delivered her slips in and watches the scene for about half a minute before putting his hand on my shoulder, turning me to face him and explaining that I didn't do anything wrong. Sometimes, he said, women that do everything right have sick babies. And sometimes women that do crack have healthy babies. There is no explaining it. It just happened. And it wasn't my fault. He asked me if I understood and I said yes. But in the days to come I would categorize every single thing I ate, drank or did while pregnant in an effort to understand. I would also learn that the missing spleen and organ displacement had a name. Heterotaxy. I won't learn how rare and fatal heterotaxy is for many years. There is no information on it and doctors don't know how to treat it. They consider you a CCHD baby and that is what I go off of for all the months that you live. I will leave you with me standing at her bedside with big giant tears of shock, terror and sorrow streaming down my face. My entire world has been drop kicked . From this point on, life is never the same. Now we just wait. They will be here to take you soon.........