Wednesday, January 28, 2009
MAJOR PRAYER REQUEST!
Ok, I was going to write a REALLY funny blog today but, I am not feeling quite up to it. Yesterday, I received an email from someone who has become quite a good friend and is an amazing photographer! Not too long ago she shot an adorable princess for me to put on my site named Zoey. Zoey's mother is a friend of hers that she and her husband BOTH are in need of your prayers. I ask that all of you who have children take a quick second of you time to STOP and take a minute to remember how greatly appreciated a prayer would be if this was your child. Then, take a second and just thank GOD for your healthy children. PLEASE take 5 minutes to read this little angel's story.
Not sure where really to begin. I apologize for not updating quickly and as things happen. I probably should though. I want everyone to know what is going on so prayers can be prayed but sometimes I just do not have the strength to do it. I definitely am in a funk, a slight depression and just completely overwhelmed. I am unsure of how to put these feelings into words. Zoey has been moved up to the PICU (pediatric intensive care unit.) On the floor her breathing was becoming very labored and she was working so very hard to breathe. Her oxygen levels were dropping and the pneumonia was not getting any better. Her lungs were full of mucous. The left lung was especially bad and she was barely passing any air at all through it. She was brought up the unit to be placed on a CPAP machine. This would help to keep her lungs open with positive air pressure and give Zoey a break. This way she did not have to work as hard to breathe. Before we came up the doctor had a talk with me. A talk that I will never forget. He explained to me that he spoke with Zoey's neurologist in length about her condition. Zoey is very sick. Yes, she does have infantile spasms. Yes, she does have partial focal seizures. These are horrible conditions alone not to include everything else that is going on with her. Her brain is not developing correctly. There is something underlying that is causing these problems and we may never know what it is and in turn never know the proper way to treat it. With all that said, things look bleak. Zoey’s neurological condition and status are determining the rest of her future. I know all of these things. I have taken the time to prepare myself for the worst but I never thought that this would actually happen No matter how hard you try to prepare yourself for something like this, it will never make it any easier. I never thought I would be discussing what Zoey’s treatment plan would be. He told me that Derick and I needed to discuss how far we wanted to take this and what exactly we were willing to put Zoey through. I literally felt the life sucked out of me at that moment. I do not want to make those decisions. This is my 5 month old daughter. She has not had a chance to live her life. She is not 90 years old and I can say that she has lived her life to it’s fullest. But at the same time, what about her quality of life now. Since day one Zoey has rapidly declined. She sleeps and seizes. Besides her first day of life, I have never had a moment where I felt connected to her; where I felt like she was in the world with me. I have never had her look into my eyes and I know that she saw me or was a part of my world. She has fought so hard to be where she is today. I have never seen her awake to enjoy the world around her. I wonder if she even knows that she exists. She is never awake or able to move any part of her body. This is no life for her. Oh the pain…I am so scared. I am scared to loose my child. These have been the longest 5 months of my life. It seems like I have been doing this for years but at the same time it seems like just yesterday I was pregnant and giving birth to my daughter.Our time in PICU has been overwhelming and we have had a couple of scares. We actually had to change a to Bipap machine instead of a Cpap. A bipap helps with inspiratory function as well as expiratory. She is breathing on her own but she is working very hard to do that and not talking deep enough breathes. She will tire out very quickly at this pace and that in turn can cause other problems. We have almost had to intubate twice but each time Zoey has pulled out on her own (or by the strength of god.) She is so strong and such a fighter. She has fought through some very rough times and I am sure that there are more to come.Derick is here with me now. He came up Monday and is going to stay until Thursday. We have a family meeting scheduled tomorrow with the doctor, social worker, case manager and nurses. This will be to discuss long term care for Zoey. This will include palliative care options, intubation, a tracheotomy and if any of this will help. From the neurological stand point, Zoey is not going to get any better. Her brain is not developing at all. There is no communication between both sides and there is very little myelin. Without the development of myelin she will not live. If there is not normal function in the brain, there is not normal function anywhere else. She is rapidly declining and has been doing so since birth. She has lost a lot of function. They only expect this to get worse. I have no idea what to do. I want to fix all of this. I want to yank her up out the hospital bed and take her to another hospital. I want another opinion. I want some one to be able to tell me what is wrong with my daughter and what we can do to fix it. I talked with Zoey’s geneticist on Friday. We discussed how we have tested for a lot of things, over and over again, and everything is negative. He does still believe that it is something genetic and that we just may never know what. I am not happy with that answer. I can’t fathom loosing my daughter because no one can figure out what is wrong. Well, what about the next child that this happens to? You don’t just say “oh, we had that happen to a girl once before.” I keep replaying in my head what I could have done differently, where I could have taken her, what I did wrong?? The geneticist says that it is no one’s fault and there is nothing that we could do to change this. Derick and I just carry an abnormal gene and they met up at the wrong place. He told us that if we choose to have more children there is a 25% chance this could happen again. Another thing that makes me very upset but I will not even get into that now. Derick and I have no clue what our decisions are about Zoey’s care. I don’t want to loose her and neither does he. At the end of the day, we want to know that we did everything possible for a our little girl. We want to make sure that we left no stone unturned and that we never gave up. But then there comes a point when we don’t want to see her go through this anymore, where our heart hurts for her and where we feel selfish for putting her through all this. I would never be able to live with myself though, knowing that I just gave up. I just want to crawl up in a hole and not come out. Derick has mentioned that he would just love to run away and not come back. The situation is just too hard and overwhelming to deal with. I can’t believe that people actually go through this everyday. I hurt for everyone that has to make these decisions. I want to ask that you continue to pray for Zoey’s miracle and COMPLETE healing. “Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my father in heaven. For where two or more come together in my name, there I am with them.” Matthew 18:19-20. I am still clinging to hope that this can all change and that our God will perform a healing and miracle in our Zoey’s life. I ask that you pray for strength for Derick and I. That we are able to walk by faith and that we continue to place one foot in front of the other. I apologize again for not updating. I am sorry for not calling or answering my phone. Some days I just can’t do it. I just can’t go through it again. We love you all and thank you for your support.
Thank you for taking the time to read this story of an adorable angel who is fighting so hard as we speak just to breathe. Please remember her parents who are faced with this decision about something that is to most of us, UNIMAGINABLE. Thank you for popping in and know that ANY time you or anyone you know of are in need of prayer, RIGHT HERE starts a HUGE prayer chain of people all over the world! I am ALWAYS willing to post! Prayer is power! EVERY ONE'S voices WILL be heard!
Thank you for being such amazing customers. I love all of you!
Posted by Miss Things Boutique at 1/28/2009