Wednesday, January 28, 2009

Empty Arms

I find it odd that I originally created this site to share Allie's progress. Today marks two weeks that I have been without my precious Allie, and yet it feels like an eternity since I have been able to hold her in my arms and kiss her little sweet head. My arms ache to hold her, and oh what I would give for just one more kiss. It is extremely difficult adjusting to life without her, because she had pretty much been attached to me for almost 14 months, so I find myself reaching and looking for her and then breaking down when I remember that she is no longer with me. I miss her more and more every day, and I know that only time will ease this pain. We have tried to get out of the house a few times to attempt to get our minds off of things, but that is difficult to do when you go to public places because there are babies everywhere you look. Please don't get us wrong, we are not upset that other people have babies, it is just that seeing babies makes us miss our sweet angel. Even though we expected to loose our Allie one day, it still didn't make it any easier to say goodbye, and I guess it was still a little unexpected because she had been doing so well.

In the big scheme of things, her passing was quick. One week we were receiving a great report from her cardiologist and the next week she was gone. Her condition changed so quickly, but looking back I think the signs were there we just didn't want to accept them. It all started with what we at first thought was a stuffy nose. She seemed to be having trouble breathing, and as the week progressed she worsened. By Thursday she was not eating well, so our heroic neighbor along with Dr. Sabens suggested taking her to Children's Hospital for fluids. She was given fluids through an I.V., and she also had to have some oxygen because her level was low. They did blood work to see what type of infection she had, and like us, when they tried to suction her nose nothing came out. We went to a room and stayed the next night as well for observation, and she seemed to drastically improve. All of her tests showed that she had no infection in her body, she was breathing better, and she was eating again. Saturday, we were discharged with some oxygen, and we were thankful that we had conquered her first trip to the hospital. Only two hours after she had been home, she began to have respiratory trouble (frequent apnea episodes). The Hospice nurse and Dr. Sabens wanted us to take her back to Children's, but we were very reluctant. We asked if we could just observe her through the night, because I think we knew what would happen if she had to go back to the hospital. She did well through the weekend, but on Monday she stopped eating completely. We knew we had to take her back, because we had already decided that no matter what we were going to keep her comfortable, and letting her get dehydrated would not be keeping her comfortable. Therefore, we made the trip back to Children's with horrible thoughts of possibly not getting to bring her back home, running through the back of our minds.
She had to have another I.V., and we chose not to do any other blood work. They decided that it would be best for her to go to the special care unit so that she could be closely monitored due to her frequent apnea episodes. Under our circumstances we were able to stay with her and hold her while she was in the special care unit, and she was monitored through the night. It did not take us long to realize that her time was drawing to a close. When the team of doctors came in the next morning, the focus of discussion had changed. We were now having to make decisions that no parent should ever have to make, and it was extremely overwhelming. Michael and I were basket cases. I have to be honest, it was not easy watching Allie suffer through her last few days. We had many moments of weakness. I vividly remember sobbing uncontrollably, and pleading, and questioniong. I think that if I could have briefly unhooked Allie from the monitors, then Michael could have completely demolished that hospital room in an instant with the monitor machine that was constantly beeping. We are human, and I truely believe that these are normal feelings and that God will forgive us for our weakness. Our main goal was to keep Allie comfortable, and that is what we tried to do. They moved us to a regular room and we started her on morphine to help if she had any pain. She was crying a lot, and the doctors tried to explain that she was not really in pain. They said that she was just exhausted and scared from not being able to catch her breath. Because she was crying so much, it was hard for me not to think that she was in pain. I didn't want her to be in that state of discomfort. On Wednesday Allie's heart rate started correlating with her apnea spells. Her brain was just no longer sending out the proper signals to tell her to breathe, and her little body was having to work too hard. She was such a fighter, and she fought to the very end. Around 5:30 that evening my little angel took her last breath and her heart stopped beating. It felt like someone had reached into my chest and ripped my heart out, but in that same moment there was a sense of peace that fell over me. I could feel the presence of God in that room, and that is when I realized that it was time to let her go. We had watched her suffer for three grueling days, and we knew that she was no longer in pain. I think that we were able to have peace because we knew that she was safe in the arms of Jesus and completely perfect. We were able to give Allie her last bath, did some hand and foot prints, and take a few last pictures. The most difficult moment for me was when I had to hand her over to the nurse and leave the hospital with empty arms. That entire time, from when she had passed until midnight, I was able to be with her and still hold her, and I think that it almost tricked my brain a little because she was so content and looked so peaceful that it was almost like I still had her in my arms just like always. Michael held me close and whispered to me, "It is not really her, Susan." Looking back at her, I knew that it was just her body. She was now an angel in Heaven. I feel so honored to have had Allie as my daughter on earth for almost five months, and she will forever be with me. She touched more lives in those short months than most people do in a lifetime. She was such a blessing, and loved by all. Her big brother also adored her and he asks about her a lot. Even though we have been very honest with him and explained that she has gone to Heaven, he is three and just can't completely comprehend. He gets upset from time to time and says things like, "When is Allie going to get here?", "....but I wanted to play with her!" He misses her dearly, and we know that it is going to just take time for all of us. We have been so touched by everyone's thoughts, prayers, and cards. Thank you all again for all you have done. Please continue to pray that God will give us strength.


Monday, January 26, 2009

What keeps me sane

Today was Michael's first day back to work. I knew it was going to be tough, so I decided that Mason and I needed to have a special day. We truly made a day of it, and I think it was something that we both needed. He and I had a great day together just getting out, and I honestly don't know how I could get through this without him. With God's help, Mason is what helps to keep me sane and get me out of the bed every morning.


Sunday, January 25, 2009

Celebration of Life Slideshow

Yay! We finally figured out how to get her slideshow on the blog. If you will go to the In Loving Memory of Allie Rebecca Brewer button to the left, it is now linked to her slideshow instead of the trisomy 18 site. We have a seperate link for her Trisomy 18 site now. The entire slideshow is about 33 min. long, but if you somehow have the time or can fastforward through toward the end, you have to see all of her smiles. It is an amazing site! This is how we wanted to play the slideshow at her service, but the setup didn't quite work out. We hope you enjoy watching her pictures from birth to New Years as much as we do. Thank you.

P.S. It was brought to my attention that people were unable to post comments on the blog, so I have corrected the problem. You should be able to post comments now. Sorry for the inconvenience.


Wednesday, January 21, 2009

Thank you

We want to thank everyone for all that you have done for our family during this trying time in our life. There is no way that we could ever find the words to thank you enough or even know who all has prayed and thought about our family. Allie touched so many lives! We greatly appreciate all who have made donations in Allie's name. It means so much to us to try to help others in memory of our baby girl. I have tried to post Allie's celebration of life video on the blog to share with everyone, but the file is too large :) Sorry. Saturday, we somehow managed to get through Allie's service. Some say that it is due to shock, but I like to think of it as God having his arms wrapped around us so tight that it has cut off our circulation. We are pretty much in zombie land and having a hard time believing that this is actually happening. Today marked one week without our Precious Angel, and it was an extremely difficult day for us both. Please continue to pray for our family. I will try to write soon about our last moments with our Little Angel. Thank you again for letting Allie be such a wonderful part of your lives.


Friday, January 16, 2009

Arrangements for Allie

We will have a short visitation before the funeral on Saturday. Visitation will begin at 1:00 PM on Saturday, January 17, 2009 at the Munford Church of Christ in Munford, AL. The service will begin at 2:00 PM after visitation. The burial will be at the Hillcrest Cemetary located in Munford.

In lieu of flowers, we would like for donations to be made in memory of our precious Allie to one of the following

Children's Hospital of Birmingham~

New Beacon Hospice of Anniston~

Trisomy 18 Foundation~

Each website is different so please make sure to note that the donation is being made in memory of Allie Rebecca Brewer by either typing it in the box labeled~ donations in memory of, or in the comments box if the site doesn't have a specific box. Thank you.


Tuesday, January 6, 2009


Welcome to our blog. We are the Brewer family and we have two magnificent children. A three year old son, Mason, and a four month old daughter, Allie. Our daughter has a chromosomal genetic disorder called Trisomy 18, Edward's Syndrome, which is typically thought of as not adaptable to life. She has already beaten the odds by surviving two months past the average life expectancy of these children. The purpose of this blog is to help provide updates of Allie's progress and other general information about our family. We are new to blogging, so be patient with us during our learning phase :) Thank you for visiting.


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