ANNIE GRACE SABIN - March 30, 2010 - August 1, 2010

ANNIE GRACE SABIN - March 30, 2010 - August 1, 2010

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Wednesday, July 28, 2010

A Fine Mess

I know that this post is way overdue. Annie is not doing well and it is has been hard to do anything but be with her right now. Although Annie came through Friday's surgery well enough, within 24 hours, she was struggling again. The fluid that we were hoping would decrease after surgery has come back with a vengeance, and she is again putting out more than a liter a day. In addition, Annie responded to this surgery as she has to surgeries in the past: with lots of swelling. The swelling makes it difficult for her lungs to expand and for the ventilator to give her the size of breath she needs to be well oxygenated. If she gets upset, this only makes the problem worse as she bears down in anger and fights against the ventilator, leading to a very scary cycle that is difficult to break. These issues began Sunday night, and when I arrived on Monday morning, it was clear that Annie was in really bad shape. The doctor wanted to meet with us and discuss where we should go from here. He told us that, as far as they are concerned, there is no hope that Annie can recover. I asked why, in spite of her terrible condition, had her kidneys and blood pressure suddenly improved. He had no answer for this, but told me that it did not matter as the chest tube output had not decreased with the surgery. He encouraged us to think about removing the support that we are giving Annie and letting her pass. He explained that, ethically speaking, there is no difference between putting a breathing tube in and taking one out. That while she is alive, it is because of the artificial support that she is being given and therefore, we might find peace in knowing that her death would be a "natural" one. Maybe that sounds good when you read it in a medical journal, but no journal article can account for what it is to be the mother of a bright-blue-eyed four month old daughter that is SO there. Granted, she makes no sound, but she is still there. She maintains eye contact for long periods of time and listens closely when I talk to her. She has a personality that is patient and mild. She has a spirit that lives in this body and who am I to decide when her mission is done? Her quality of life is not what I would want for any baby, but this is her life and she has known very little otherwise. Interesting, how her life is not viewed as inhumane until the doctors have nothing else to offer her. Of course, we don't want her to suffer; we love her more than anyone else possibly could. We did tell the doctor that if the struggle on the ventilator should continue, we were not willing to stand by and watch her starve for air for days on end; that if that were the case, we would view withdrawal of support as a merciful decision on her behalf. However, we have seen Annie swell many times in the past and watched her recover again and again. The doctor told us that he fully expected her swelling and breathing issues to worsen and never get better. Thankfully, he was wrong, and the swelling has decreased and she is again being ventilated successfully.

And, there you have it: what a fine mess we are in. We told the doctor yesterday, that as long as we can keep Annie comfortable, we would like to give her time and see if she will make the decision on her own. Neither one of us feels comfortable making this choice for her right now and are praying mightily that we will not ever have to. The truth is that we still have hope for Annie; we hope every day that things are going to get better and she will begin an upward climb. I don't think we will be done hoping until she is gone. At the same time, we fully understand that, medically speaking, her condition is hopeless. Finding peace between hope and hopelessness is quite a challenge. A fine mess indeed.

29 comments:

  1. I don't even know what to say. "I'm sorry" seems so empty for such a trial you are facing. I wish so much that Annie would recover and come home to be with her family. I don't know how you are staying so strong with the adversity you are facing. Your faith and strength during such a trial is so amazing. I will keep praying so hard for your family <3

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  2. I'm so sorry to hear this. I had high hopes that this last surgery would help her. I pray that a miracle will come your way, and soon. I can't imagine the pain that your family is enduring right now. You're in our prayers. I pray that peace and comfort will come to you no matter what the outcome may be.

    Love,
    Hayley (NILMDTS)

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  3. Amy,
    I am sorry. If I am asking why? I'm sure you must feel that 100x's more. Sweet little Annie is in our prayers and thoughts. Please know we still hold on to hope for your miracle and peace for all of you for whichever road your journey takes you on. xoxoxoxo
    Nikki

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  4. I have been hoping for an update! It seems so surreal - it feels like she should be getting better. I hope she does.

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  5. Oh Amy! My heart just breaks each time I hear a report like this. I am so sorry. Those bright-blue eyes have touched us all...even if just in pictures. I pray you and Cameron find strength and comfort right now.

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  6. My heart aches for you and your family. Your sweet baby is so beautiful and I have enjoyed getting to know her through the blog. I pray for hope and that the Lord will continue to comfort you. No mother should go through this trial. You inspire me and everyone that reads this. You are amazing. I will still hope.

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  7. I think Emily Dickinson captures the hope we all have for Annie:

    "Hope is the thing with feathers. That perches in the soul, And sings the tune--without the words, And never stops at all."

    Keep fighting, you beautiful and strong little angel! You are so blessed, although you don't have words of your own, to have loving, wise, and faith-filled parents as your voice and advocate.

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  8. Everyday I hold my breath while I look for a post. As a nurse I have seen the odds be beaten and miracles happen. As a daughter I thank my parents for going against the odds 54 years ago. As a parent I can't even imagine your strength you have shown these months. I feel honored to know you and your beautiful child through this blog. I think of you and pray for you and yours everyday.

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  9. Amy,
    I still think about you and little Annie every day.
    I am so sorry you are still going through this. I think if Annie could talk, she would tell the Dr.'s everything that you have. You are her voice, her advocate. Keep pushing.
    I pray that you will be blessed with peace, strength and courage.
    I love the song on your blog. I wish there was something I could do for you. Give you some more strength or something.
    All of my love,
    Tiffany~ Isaac's mom

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  10. Keep trusting your instincts, and promptings, you and a Kind, Wise Heavenly Father will work things out. Annie is lucky to have such wonderful people on her side. Much Love, Kerry

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  11. You are in my heart and prayers daily. Tell annie We believe in her and will be here praying for a miracle............I believe in her recovery and send our love to you and your family

    Ivy

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  12. Don't let anyone push you to a decision that you are not at peace with making. You are good parents. Annie knows this, God knows this and I have been given the privelage of witnessing this first hand. Annie knows what is right for her and for your family, stay strong with your faith in this. You are in my thoughts and prayers daily.

    Staci (angel Bridger's mom)

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  13. Amy,
    My name is Michelle and I'm a heart mom as well. My sweet baby girl received a heart transplant at Primary Children's Hospital in December.
    I came across your blog about a week ago and since then I haven't gone a day without crying, praying and worrying about your sweet, beautiful Annie. I read your entire blog in one setting. Your posts are absolutely beautiful and I have learned so much from them. Thank you. And a special thank you to Annie for teaching me.
    Amy, I admire you. You are such a good mom. You are doing an amazing job and Annie is so lucky to have you. You and Annie will always be in our thoughts and prayers.

    Love,
    Michelle (Madison's mom)
    cooperandmadison.blogspot.com

    P.S. Check your e-mail.

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  14. I was so hoping for a good update. I am so sorry Amy and Cameron. We are still hoping that Annie will decide to stay. You are constantly in our thoughts and prayers!

    The Swindlers

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  15. My heart goes out to you. I truly understand the position that you are in, and I agree with your decision. It was SO wonderful to get to meet you and Annie. Her spirit is so strong and amazing, her life is a blessing and a miracle. You will continue to be in my prayers.... Praying for peace, guidance, understanding, and most importantly, for a miracle. Hang in there!
    Love,
    Hollie and Elaina

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  16. You are right to continue hoping...for He is a God of miracles.

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  17. A few years back, my sister was faced with the following dilemma... have a "therapeutic" abortion and undergo chemotherapy OR go ahead with the chemotherapy knowing that it may cause you to lose your baby. She just couldn't say yes to aborting her baby, but went ahead with the chemotherapy which she needed to stay alive in order to care for her other child. I can honestly say that I would not have thought any less of her no matter what the decision... but she had to seek the Spirit and make a decision she could feel good about. Yes, her son was born early and with complications due to her illness and other things as well. They had 8 glorious months to love and care for their little brother. I was privileged to help her dress him for burial and hear her bear testimony that the time would come when she would hold him in her arms again.

    Prayers and love come your way from the Crandalls ^_^

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  18. Sweet Amy,
    You and your precious Annie have been in my thoughts the past months and particularly in the last couple of days. I am so impressed by your ability to write and share your experience during this difficult time and I think it is clear by the amount of comments on this post, in addition to your others, that you and your family are truly in everyone's hearts right now. I do not know exactly what you are going through or how difficult it must be for you to be in such a tragic "mess," but I completely agree that your little Annie is indeed "there" and that she is not only aware of you but that she can feel your love and concern for her.

    Know that you are loved and supported,

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  19. "Hard" doesn't begin to describe the process of letting go does it, Amy. Letting go of desired outcomes and accepting/ accomodating 'what is' can take a lifetime. Either outcome with Annie will be life-altering. Neither will be what you desired. Sometimes parents *do* have to make the hard decisions. Holding you in my heart... <3

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  20. Amy, Cameron,

    we love you both SO much. You have stayed true to everything good I ever saw in you each and together. You are continuing to be wonderful examples and just as you have in the past, you are making the right choices now. Annie is so blessed to have you and your other beautiful children to love her. You just keep trusting that guiding light and you will be at peace. We are behind you, praying for you all. You are succeeding as you bear this humbly and seeking God's will along the way. You will be blessed to know it and with great peace. Bless you.

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  21. Amy, Our prayers go out to your cute family. We hope you get your miracle. I think about Annie on a daily basis and hope she will pull through. Thank you for your inspiring wisdom. You are a very strong individual. Best wishes,
    Jen

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  22. Look at how much of an influence Annie's life has already been. All of these comments of friends and family that love you and Annie. So many people know about Annie and are praying for her and your family. It's incredible. I love you guys.

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  23. My heart just aches for you guys having to watch Annie's journey be so filled with bumps and struggles. I know that you are taking all of the thoughts of the medical professionals into careful consideration and we pray that you are able to feel some spiritual guidance and peace as to know what Annie needs. It is a place that no parent would ever want to be in and I very much wish that Annie was able to be home with you all right now!

    Alli and Grant

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  24. Just want you to know that my prayers are with you. I can't but think that you have heavenly angels attending to you all.
    (HUGS)
    Carolyn - IHH

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  25. I am so sorry that you are going through this. I want you to know that our family included is continuing to pray for your family and your sweet Annie. Sometimes Miracles happen that medically can not be explained. We have witnessed some of those during our time in the hospital.

    Becca-Ellie's mom

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  26. I am so sorry to hear that she is not doing good. I just wish everyday that she will get better and go home. We will continue to pray for Annie and your family. It is so hard as a parent to watch your child suffer in the hospital, I believe that is the toughest thing a parent would ever have to do. I really am hoping for a miracle for her. Hang in there, and if you need anything please let me know.

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  27. Dear Amy and Cameron and Family,
    With sadness we just received a phone call from Sonny. While we were disconnected right away, we still got the message that she is coming down to Salt Lake tomorrow to be with you and your family.
    Amy, I have followed little Annie's life up to now and I want you to know that both, you as her parents and also little Annie have put up an admirable and valiant fight as long as she was permitted to remain upon this earth. What a glorious opportunity and blessing she has had to get to know her earthly family and spend some time with all of you and get to know you. What a thrill it must have been for her to experience your tender and caring love for her and her frail little body. What a choice blessing for all of you, to have this time together. The Lord has truly been good and merciful to allow little Annie that experience, because as far as the Lord and also little Annie are concerned, her mission was completed by receiving an mortal body, for that was all she needed to progress eternally. I can just imagine how heartbreaking it was for your entire family to watch little Annie struggle, but she was a "true little survivor and fighter", she wanted to remain with you for just a little while to get to know you. As you talked to her, she could feel of your love for her and as you looked into her blue beautiful and bright eyes, you could feel of her love for all of you.
    That is truly what eternal families are about, loving and caring and being there for and with each other.
    I know how Annie is rejoycing right now, being with her grandfather and all others who love her dearly and have watched over her along with you. How great her reunion with her Heavenly Father and her older brother, namely Jesus Christ will be. She is a noble and choice Spirit, having been born into a noble and choice earthly family. She understands eternity and its blessings, she understands and comprehends family love and family ties, she must be so grateful for the time she was allowed to spend with all of you. But now she is equally grateful to be back in her Heavenly Home. I am sure that she will be allowed to watch over you and be aware of the things that are happening in your life, because she is part of your family.
    As far as I see it, she was allowed to be with her earthly family. As you gathered today to be with her one last time, during her last minutes here on earth, she was truly "home" with her earthy family. You were united today, just as you will be united throughout eternity, for you are indeed an "ETERNAL FAMILY".
    May the Lord bless you during the coming days and years. May you always remember His great love for you in allowing Annie to remain in mortality for a few month and become an active part of her earthly family.
    Parting is one of the hardest things to do, especially when one has to let a loved one go. Sadness and tears are a very human and normal thing, emotions will run high, but I know that the Lord will send His comforting Spirit, as you deal with "letting Annie go to her Heavenly Home". What a comforting blessing it is to know the Gospel plan, the have the blessings of a Temple Marriage, and that of an Eternal Family. Nevertheless, the pain and sorrow will be overwhelming at times.
    If there is anything I can do to help, please let me know.
    I love you, Amy. You are such a wonderful young woman and such a special mother.
    Love always, Marion

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  28. Amy & Cameron:

    I'm so sorry to hear that Annie passed today. This has been an especially difficult time for you and your family.

    May the Lord bless you with comfort and insight in this trying time.

    Cousin Bonnie

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