Sunday, January 31, 2010

On a Happier Note....

Sorry, my posts from November to January have been so grueling. I guess that was just my emotional place at the time and I had to let it all out. Thank you all for listening and providing comfort during those lowly times. I wanted to change the tone a little with this post, so I am writing about something happy that has happened with Allie's story. A few weeks back I received an email from a very sweet young lady wanting to use Allie's information for her school project. They were given an assignment to research a disorder and present their findings to the class. She had chosen Trisomy 18 and came across my precious Allie's story during her research. She put together a fabulous PowerPoint presentation which included some information about Trisomy 18 and some pictures of Allie along with many other precious T18 babies. When she informed me of how the presentation went, she told me that she had decided to just print out a copy of Allie's story from the T18 website to go along with her presentation. She said the other students were amazed by her story and just how beautiful Allie was, and that they were all asking if they could keep the printout for themselves afterwards. That just warms a mother's heart. I want to give a special thanks to Sarah for doing such a wonderful job and getting the word out there to a few more people about Trisomy 18.

Michael finally convinced me to take the plunge and cross over into the 21st century. I am now on facebook. :)


Sunday, January 17, 2010

For all you Facebookers.....I need your help.

First of all, I would like to thank you all again for your wonderful love and support. Your comments, cards, calls, emails, and gifts were so touching and comforting. To see so many remember Allie on her Angel Day meant so much to us. It was the perfect reminder of how many lives she touched and how much she is still loved.

With that being said, I try to get the awareness for Trisomy 18 out there as much as possible to help her memory live on as well. I have received an important message from Victoria Miller, the founder of Trisomy 18 Foundation, about an opportunity for the foundation to win $1 million toward the cause. This is a fabulous site for parents, friends, and family of T18 babies. Michael and I depended on its many resources to help get us through on several occasions and still use them to this day. All we have to do is vote. The only problem is that it is a Facebook challenge, and I do not have a Facebook account. I know, I know--you didn't realize there were still some of us out there that had not crossed over into the Facebook world yet, but there is. (I may be the only one, but there is at least one) :) So, I thought I could at least try to get the word out there to all of my bloggie buddies that have Facebook accounts or know of others that have an account. I would greatly appreciate you taking a minute to visit this site and voting for the Trisomy 18 foundation in memory of my sweet Allie. Don't forget to pass the message along to all of your friends also. Thank you all again. (Ends January 22)


Thursday, January 14, 2010

Our First Year Without Her

One Year--- Wow, I'm in such a confused state. So many people think of a year as being a long time, and it is to some degree. There were probably even some that couldn't figure out why we had such a tough time during the holidays because in their minds it had been almost a year since we had lost our daughter. But to us- it was our first Christmas without her, and it was having to start our first New Year without her. To those that it does not affect on a great personal level, then a year may seem long enough to move on and forget. For the ones like us who've lost their child though, we will never forget because those thoughts and memories are constantly close to our hearts. Therefore, in so many ways it feels like it was just yesterday, because all of my feelings, emotions, and memories are still so raw and vivid. How could it already be a year when the memories replay like broken records in my mind? It only takes something as small as a smell, a touch, a sound, a song, or a feeling for the outpouring of emotions to return. However, if you are speaking in terms of how long it has been since I've held her, kissed her, smelled her, sang to her, fed her, bathed her, comforted her, swaddled her, rubbed her soft hair against my cheek, or seen her smile then it feels longer than the words eternity can describe.

We "knew" all along that Allie's time on earth would be short, but nothing could have prepared us for this day last year. She had done so well. My guard was down, and I was clinging on to that minuscule shred of hope that she was going to be a member of the rare group of T18 babies that would survive for years. So much so, that I BELIEVED it with my whole heart. Allie had received a fantastic heart report just a few days prior to her first hospital visit. It was actually that day when we noticed something was different. On our one hour journey home from her doctor's visit she began getting fussy. This was not normal behavior for her. She was content 99.99% of the time. I tried feeding her, but it got worse. She started turning blue, and I began screaming for Michael to pull off the road. I thought she had strangled, but I didn't realize that it was the start of her soon to be problem. From that moment her condition worsened. It sounded as though she was extremely congested (almost like she had a cold), and we were mortified because we had tried so hard to keep her well. Mason had recently been sick (which we now know was the start of his asthma), but we had everyone in masks, we kept her isolated, and we used bottles and bottles of disinfectants. (Seriously- my family alone kept the disinfectant companies in business). By the end of the week we were taking her to the hospital, for what we thought was just a cold. It was very important that her cold not turn into something worse, so we thought that Children's could help keep the cold under control. Like us, they were having trouble finding all of that congestion it sounded like she had. Why did she sound so bad if there was no congestion was the question that baffled us all. Nonetheless, she seemed to improve some and they sent us home with oxygen. We rejoiced in the fact that we had survived her first hospital visit. After returning home on that Saturday, she didn't pull through the way we had hoped. I was up with her most of the weekend, and at one point I remember thinking that she was just being a typical baby finally that had developed colic or something. I know I was reaching for a long shot, but my faith was strong. By Monday her breathing had impaired to the point that it was necessary for us to return to the hospital. Keep in mind that during this time we were still thinking that she had a cold, and that if we could get rid of the cold then she would return to her normal happy self. Most of the images of those final days with Allie are still fresh and clear in my memory. Some things are a little fuzzy, but I do have to remind myself that I was running on very little sleep and a roller coaster of emotions. It upsets me (even though they are painful) that most of these images that are so clear today will also fade with the passing of time.

We arrived at Children's again, and it's as if I'm sitting back in that tiny emergency room when I recall this memory of my husband arguing with the doctor. He had never spoken to anyone with that tone before, but he was being completely heroic and standing up for his emotionally pitiful wife that wanted so badly to stay with her baby. Allie needed to be placed in the Special Care Unit, which only allows parents to visit during visiting hours. I remember looking up to the doctor and pleading with despair in my voice, "You don't understand. I don't know how much time I have with her, and I have held her almost every second of her life. I couldn't live with myself if something happened and her final moments were spent lying in a hospital bed instead of in my arms." He finally got the picture and pulled some strings for us so that we could remain with Allie during her stay in the Special Care Unit. The rooms in the Special Care Unit are basically cubicles that pretty much only have room for the bed and machinery. We were fortunate enough to obtain one that had doors and a small restroom, and they pulled two chairs in for us to have a place to sit. They also allowed me to keep her in my arms instead of placing her in the bed. It was such a rough night. My body was weak and aching, and my arms shook as I cradled her all night in the chair. I had been awake for 24 hours, and Allie was hooked up to a million machines and restless. She would stop breathing nearly every other breath, and I think we were beginning to realize that things were not looking good.

It was around lunchtime the following day when the team of doctors stopped by to talk. They basically told us it was time to make some tough decisions. We had made these decisions before she was even born "so it wouldn't be so difficult when the time came", but here it was...time to decide. This was another one of my many breakdown moments, and I was basically numb by this point. My brain was no longer functioning, and I didn't know what to do. I can remember being so angry, because I had prayed so hard for it NOT to happen this way. My prayer all along was for her not to suffer at all and for God to take away any decisions that Michael and I would have to make. (Obviously, I thought very highly of myself because I was expecting God to make it a no brainer for us and take away any responsibility.) So, why was she suffering, and why were we having to make the decisions that I didn't want to make? The next conversations are some of my fuzzy moments that I wish I could recall more clearly. I couldn't fathom how a cold could have done this to her, and this is when they proceeded to tell me that she did not have a cold but that it was the T18 playing out. My recollection of this conversation is a fog. I do remember the mention of apnea and that her brain was no longer sending the proper signals to tell her to breathe, but I cannot recall if they mentioned the second type of apnea. I'm not sure if it wasn't mentioned, or if it was mentioned and I just didn't pick up on it since I didn't know about it at the time. Oh, how I wish I would have known all that I know now back then. I'm not sure if it would have helped or changed my decisions, but maybe I wouldn't beat myself up so much. Allie had the typical apnea that is usually associated with T18 babies (which is the one they say is not treatable because it deals with the brain not telling you to breathe- this is also the one we knew she had and remembered the doctors mentioning), but I have since learned of another type of apnea that is due to a collapsed airway (which is treatable through surgery). I believe she had this one as well based on her symptoms. It makes you feel so ignorant to learn of things, you feel like you should have known, after the fact. It scares me to believe that I might not have done everything I could have for her or made the best decisions when in fact that is what I was trying to do. I have also read where some have actually had luck using caffeine for the apnea- again, all things that were unknown to us then. Even though it makes me question and she did still have the "untreatable" apnea, I'm still not sure if they would have even performed surgery on such a weak little one to take care of the second type. It just makes me feel like I didn't do enough for her, or that I didn't fight for her, or that I gave up on her. I did question why her chest was still moving sometimes when she had a spell if her brain wasn't sending the signal for her to breathe, but they never had an answer for me. My knowledge was lacking. Anyway, our decisions were based on our feelings and beliefs at the time, which were that it would be worse to intubate since she would not be able to recover from this type of apnea. In our minds this was going to prolong her suffering and we would eventually have to decide when to take her off the support, which meant we would be right back where we left off plus an additional decision. We just wanted her pain to be taken away. The doctors and nurses were all very sympathetic and nourishing, but I think T18 is not something that is well known in the field because so many of these precious babies don't survive long enough for doctors to gain the experience of working with them.

They transferred us to a regular room and the waiting began. She started small amounts of morphine to try to help keep her comfortable. A few family members and friends came to say their goodbyes, and before long it was just the three of us again-- and we waited. Those were some of my lowest moments. How could I just sit there and watch my baby die? Her pitiful weak cry was heart wrenching and her little breaths continued to weaken. I felt helpless. She was a fighter from the beginning and now was no different. She fought and struggled until the next day (January 14, 2009). I was now going on 3 days of no sleep. I refused to close my eyes even for a second because I wanted to spend them all with her. My arms and back burned with pain, but I wasn't letting go. I was delirious now and not sure if any of my words made since, but it was ripping me apart to see her in such a frail state. Her hoarse little whimper will forever be imprinted into my brain, and there was so much I didn't understand. My argument to the doctors and nurses was, "You are telling me that she is not in pain, but if she is not in pain then why is she crying?" At least I think that is what came out of my mouth. They tried to explain that she wasn't in pain, but that she was scared. Well, that didn't make me feel any better. My baby was absolutely terrified by the fact that she couldn't breathe and there was nothing in the world I could do about it. How horrible! We had watched Allie struggle for three whole days. Her apnea had become more frequent and it was taking her longer and longer to snap out of spells. Each breath she did have grew more shallow and weaker. It was late that evening when my parents arrived with Mason. All it takes is for me to close my eyes and I can still see every detail of that hospital room and every moment. I was sitting in a chair by the window and the rest were all in the floor playing cars with Mason. My mom was sitting nearby and Allie stopped breathing. She had done this a thousand times before, but this time was different, and I knew it. I screamed for Michael and clenched her to my chest. I was rocking her back and forth and quivering. The word "NO!" repeatedly escaped my mouth. She was cradled in her parents' tearful arms and with one last small gasp of air, she was gone. I was crushed. I imagined myself just disintegrating right then and there, or falling limp- never to be moved again, or Michael having to put together a double funeral because I could not imagine trying to continue to live. I was standing still as the world continued to rotate around me. What I didn't want to realize at the time is that God had me wrapped in his arms, and he wasn't going to let that happen.

We were soon able to feel a sense of peace because this tiny baby that was still held tight in our arms was free from this world. This was something I never thought we could feel, but she was no longer in pain, she was no longer suffering, and she was no longer struggling to survive. She was happy and whole and with her Father in Heaven. This day changed my life forever and it has been a rough road trying to live life without her, but we've struggled to continue on in hopes to be with her again one day. We have continued moving even though most days were more like a push. It's as if we are trying to stand still on a conveyor belt full of heavy boxes, and no matter how hard we try to stand still that belt keeps moving and those boxes keep piling up until it eventually forces us forward. We've experienced a multitude of emotions on this journey of grief, including many that I regret. I hate that it took me so long to come back to my senses and realize that God was not out to get me, but rather it was Satan trying to break me down all along. Thank you for allowing me to share these bittersweet memories with you. Allie was a very special little angel, and we feel so honored to be called her parents. We love her so much and miss her terribly. This has been an extremely tough week just recalling all of the painful memories that its associated with, but please pray for us today as we try to make it through the day that we lost our daughter.

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