Addison Isabella Brown: October 2009

Thursday, October 15, 2009

It's been a long time!!!

Boy have we been busy! Again I can't believe that I haven't updated Addi's blog as often as I should. Austin is almost finished with his Freshman football. He did an awesome job as the Quarterback and I am so proud of him. Andrew's team came in 2nd at the Youth football tourney. He did an amazing job this year. And Addi, well, Addi has been super healthy and that is what we pray for each day. Her pulmonologist has taken her off her oxygen at night. Now that was a celebration! We are all excited about that, especially Addi!

We took a 4 day trip to the Big Apple! We went to see the Yankees and the Red Sox play. What a great trip. We ate hot dogs at Nathan's in Coney Island! YUMMY! What a great night. It was a very tiring trip but way too much fun! We hope to go back soon. The boys have found their love for the big city! I think they liked the subway the best!

So I have posted some recent pics of NYC and others...hope all of our followers and families of children with CdLS are doing great. I pray for you all daily and wish I had more time to read your blogs! Now that I have three jobs I am strung out pretty thin and hope someday to be down to one that allows me to spend MORE time with my sweet baby Addison!!!

Addison's Story

After our boys reached the ages of 13 and 8, Sean and I decided that we really wanted to have one more child before we reached an age where our bones were too brittle to play in the backyard. After having to buy blue clothes, cletes, gloves, pads, etc, we were overjoyed that we were actually going to paint a room in our house PINK...I'm talking Laffy Taffy pink, bubble gum PINK, the kind of pink that when you see it you want to lick it...PINK. We even picked out her name and had pacifiers made enscripted with her name. No one knew the name but Sean and me. It was a fun little secret that only he and I had. I even loved being pregnant. I wasn't really sick to my stomach, everyone commented on how beautiful I was. It truly was a dream pregnancy. I didn't gain that much weight either. That should have been my first clue that something might not be right. I was told that she wasn't going to be but maybe 6 pounds. Okay...Yes!... I could do that! Austin was 9 pounds 5 ounces and Andrew was 8 pounds 4 ounces. Piece of cake... The day finally came...the nursery was ready, the boys were ready and excited about their new sister, and I just wanted to see her precious face. It was August 30, 2007, I couldn't wait to meet the tiny little angel that had made me feel so beautiful inside and out. She arrived with coal black hair...and it was thick and curly! But...she wasn't crying...why wasn't she crying....someone please make her cry... my heart skipped a beat ...I knew that my fragile baby wasn't breathing well. All of a sudden she was taken from me before I even got a chance to count her toes. What could possibly be wrong? I tried to calm down as they took my sweet baby to the nursery. I tried to tell myself over and over that there wasn't anything to worry about. It seemed like hours before someone came in to tell me that my darling daughter had a hole in the roof of her mouth, only 3 fingers on her right hand and she was also sruggling to breathe. What? What did you just say? Surely I misunderstood. I was then hurriedly told that my baby would be taken to Riley Children's Hospital. Riley Children's Hospital? Did I hear you correctly? Strangers are going to take my baby away from me? What happened to that dream of holding my baby and bonding...bonding?...how was I suppose to bond with her? All the books tell you this is the most important moment for a baby. All I wanted to do was hold my precious little one, touch her, feel her, and tell her that I loved her. I wanted to tell her that no matter what I would be there for her. Questions started to fill my mind. Was she going to live? Was she going to be alright? What is wrong with my little girl? Can I go with her? Everything after that sems like a blur. I did get to touch my little one, through a hole in an enclosed incubator, just as the Riley Transport team came to take her away. My heart lurched out of my chest as the very tiny incubator wheeled my baby out the door to another hospital, in another town...not down the hall like I had planned in my dreams for 9 months. So there I was left alone. I told Sean that I would be fine but to please go with our daughter, Addison, her name is Addison...did I tell anyone with Riley that? She's not just baby girl Brown...she has a name...Addison Isabella Brown. The most beautiful name in the world. I said prayer after prayer since I couldn't go with her. No one would release me until the morning. I had no one to tell me that things would be ok, no one to tell me what was wrong, no one to hug me and tell me that my daughter had God with her the whole ride there....So began my journey into foreign territory. I walked into an enormous building that I had only heard from other unfortunate families. A building where miracles happen all of the time, but a building that was unfamiliar and frightening to me. Where do I go? Where was my baby? Who was kissing my baby and holding her tiny fingers and telling her that I was coming? Did she know she was sick? Did she have pain during the night? Someone please tell me that everything is going to be ok.My sweet darling daughter was the tiniest thing I had ever laid eyes on. She was perfect from head to toe. I could see her pretty eyelashes, dark and long, her eyebrows, dark and perfectly shaped, her little body lying there so peaceful. So peaseful that you would never know that anything was wrong. Then someone came to tell us that Addison had Cornelia de Lange Syndrome. The questions started again...What? What is that? Is is like Down Syndrome? I was searching my brain for some link that I could connect with....come on Angie, you're a teacher, you've worked with Special Needs children before...Oh, no, Special Needs...my baby has Special Needs? I just wanted to hold her...make it all go away...wake up from a nightmare like I have never had. As the days went on we learned about CdLS, made connections to the CdLS Foundation, found some answers... But never imagined that Addison's journey wasn't near over...just beginning. They proceeded to come and tell me a multitude of things that were wrong with my beauty. She was possibly near-sighted, had a tethered cord, cleft palate, and she didn't pass her hearing screen. I broke down into tears, uncontrollable tears. I tried very hard to hold all of my tears for when I knew that no one was watching. But for someone to tell me that my baby may never hear me say the words, I love you, well, that broke me into a million pieces, a million pieces that I thought were already broken. I didn't realize that I my heart could break more. We did get to take Addison home with us 3 weeks and 1 day later. It was so exciting. I had learned about the monitor that she would be on, the NG tube that ran through her nose and into her stomach to feed her, and the oxygen that she would be Once I got her home I watched her sleep every minute of every day praying that she wouldn't stop breathing, praying that I would have the strengh to replace her NG tube once a week as needed. I made a connection with God that fall. He was with my daughter and I everyday like I had never felt him before. I guess He knew that I would need someones shoulder to lean on because Addison started throwing up...projectile throwing up...throwing up her NG tube...what was wrong now? She wasn't gaining weight, she wasn't growing...so time went on everyday the same. I fought with the throwing up, replacing her NG tube a couple times a day...all the while crying and praying that by some small chance a dark hole would come out of the ground and swallow me up, taking me away from this nightmare that had just gotten worse. It happened day and night...I am exhausted. I would ask myself, what is sleep? Can I get some of that yet? The doctors finally realized that she had Pyloric Stynosis. She was rushed back to Riley for a Pyloral Myotomy. Ok, I thought, I now know about Riley and this will be fine. I can handle this. Addison recovered nicely and came home within a few days. She was later admitted to Riley again for pneumonia for about a week. She had a G-tube surgery, so no more tube inside the nose, that was a relief. So, time went on and she was like new again. We were doing good, going to basketball games, having fun with our sweet baby. She was so cute with a smile to die for.Then, one day she just wasn't herself. I called the doctor immediately and as I was driving down the road a feeling of urgency came over me. I knew that something was seriously wrong. I couldn't drive faster, I got stuck by a train, and little did I know, Addison was fighting to breathe. By the time I had gotten across town to the doctors, Addison was in serious trouble. They immediately called an ambulance and had her transported across the street. My heart sank again. This was not good and my baby was still so little, tiny, and lifeless laying on that stretcher fighting to stay alive. Hold on baby, I kept saying in my mind...hold on, God is with you and he will take care of you. I still can't talk about her trip across the street. It was so horrifying that I get knots in my stomach thinking about it. The Riley Lifeline team finally got there and I did feel a little lift off my shoulders. But again, strangers were now caring for my daughter when it should have been me, holding her, rocking her in our soft, cushy chair at home.Addison was in the Pediatric Intensive Care Unit when we finally got to Riley. She was intibated and sedated. She really was lifeless, fighting for her life. For 6 weeks I prayed that she would have the strengh to breath on her own. For 6 weeks I walked the same long halls, with the same brown walls, trying to understand why my baby was lying in a bed here and not at home. For 6 weeks I held her tiny hands and sang made up Ladybug songs in her ears. For 6 weeks I called my family giving them updates with good news only to call them back again with bad news. For 6 weeks Sean and I drove to and from Riley trading places so that our boys had some semblance of a normal life. For 6 weeks I didn't see my husband but for about 5-10 minutes in passing every other day. For 6 weeks I took showers in a bathroom at the hospital at 6:00 in the morning just so I could be there when the doctors came in for a checkup. For 6 weeks... Would this ever end? When was my baby going to wake up? Can she hear me? Will she be the same when she comes to? Will she still smile and laugh like before?Then one day she began to hold her own. Each day she got a little stronger and began to come back to me. Finally we were preparing to bring her home once again. We learned about the oxygen, the monitor, CPR, all over again. As if we were ever going to forget from the first class we had to take in order to bring her home from the NICU. As I walked out of the building with my daughter I almost felt like a thief. Addison had been here long enough that she didn't feel like mine. I felt scared and lonely. I would miss all of the nurses/doctors who had become my family. Was she going to be able to hold her own? I felt elated that I could sleep in my own bed and she would be in her beautiful pink room where she should be laying her head each night. I was taking my baby home again!Since then Addison has been admitted to Riley a couple of times and she sees about every doctor imaginable on a regular basis. I didn't even know that there were so many doctors for so many issues. We love each and every one of those doctors who tell us what a good job we are doing. Who tell us each time that she is growing and progressing well. The ones who help us with all of our questions concerning her difficulties. I love each and every one of the nurses who held my hand for 6 weeks while I tried to make some sense of what they were telling me. I thank all of those special nurses and doctors who let me cry on their shoulders when things weren't going Addison's way. Each time I walk through those doors I pray for all of those people who have looked after Addison with such care and concern. Each person we have met and continue to meet touch our lives in new and wonderous ways. Do I still ask why me? Yes, sometimes I do. But...look at her picture and you'll know why I make it through each day, each hurdle, each moment ... Welcome to Addison's journey....it's a roller coaster of emotions and we wouldn't trade it for anything.

Addison Isabella Brown

Thursday, October 15, 2009

It's been a long time!!!

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