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

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

Background

Wednesday, July 21, 2010

Holding Fast

Monday morning, as I was reading articles online (I do this all the time right now), I decided to look up chylothorax (a condition that we believe Annie has and could be causing much, if not all, of the drainage from her chest). I had already read these articles, weeks before, but began to review them again. As I read about the treatment options for this condition, I realized that we have tried all but one: a thoracic duct ligation. We were planning to do this during her last surgery, but the night before she went into the OR, Dr. Burch let me know that he didn't think it was necessary and that he wanted to avoid having to operate on her right side, which he would have to do in order to ligate the duct. He proceeded with the surgery on her left side, and not only did she respond very poorly to the operation, it did nothing to decrease the drainage. After reading about the procedure on Monday, I started asking some of the doctors why a ligation was not an option at this point in time. After talking with several doctors, I realized that while I was not alone in thinking that this might be successful, Dr. Burch was opposed to doing the procedure. Hoping to understand his views better and to possibly convince him to try once more to resolve all the drainage from Annie's chest, Cameron and I requested to meet with him. Tuesday afternoon, we sat down with him and discussed the possibility of doing this minor surgery (of course, we know that no surgery for Annie is minor at this point). He let us know that he does not feel optimistic that a thoracic duct ligation will put an end to all the fluid and is concerned about how Annie will respond to any procedure, as she is obviously very fragile right now. He told us that he does not have hope that Annie will survive, regardless of what we do. However, he said he was willing to do the procedure, if that is what we wanted. Next, we met with the head of cardiology and he let us know that they had received word from Stanford. Interestingly enough, the only recommendation that they made was to do a thoracic duct ligation. After meeting with both of these doctors, Cameron and I decided to ask Dr. Burch to do the ligation. We are, of course, very worried about how Annie will respond to another surgery, but do not believe that we will feel peace in her passing if we don't turn over this one last stone. Dr. Burch is planning to do the surgery sometime on Friday.

What a long and difficult struggle this has turned out to be. When Annie was born, I could never have predicted that we would be here, almost four months later, still holding our breath in anticipation of what will be. In one moment, our hearts are filled with hope, and in the next, they are heavy with despair. Some days, I feel complete trust in the Lord to carry out what I know is His perfect plan, and others, I feel nothing but panic at my inability to control any of this. More than once, we have been taken to the brink of death with Annie, sure that she cannot survive much longer, and yet, she lives on. So much contradiction. So much back and forth. So little ability to keep the peace that comes and goes. Last week, I joked with one of the Nurse Practitioners that when our days in the CICU are behind us, I might need to be treated for Post Traumatic Stress Disorder. He quickly responded, in all seriousness, that this may indeed be necessary. This same NP spent almost an hour with me today, talking about the toll that all of this is taking on my life and offering excellent advice on how to cope with the immense stress and pressure that I am under every day. He was recently an LDS bishop and, because we share the same beliefs, we were able to talk about the spiritual elements of this journey as well. During the conversation, he referred to Jospeh Smith's experience in Liberty Jail. He pointed out that even though Joseph had already seen God the Father once, and Jesus Christ on more than one previous occasion, at this dark time in his life he questioned where They were. He wondered how They could stand by and watch his suffering without intervening. The Lord responded to his cry and promised peace and future blessings to Joseph if he would endure the trial well. I was so grateful that he talked about this, because every single day this week, I have read and re-read these exact verses of scripture and have felt some of what Joseph felt then. In spite of previous experience that has taught me otherwise, I have sometimes felt alone in this. At times, I have pled for peace and felt none. And yet, like Joseph, I have also felt His promise of future peace and blessings, no matter how Annie's fight for this life ends. I am holding fast to that promise and doing my best to endure this well.

10 comments:

  1. One of my favorite songs is by Rob Gardner and one vs. says "Who knows what trials may come our way? How will we meet them? What will we say when kneeling before Him? Will He approve? God gave us trials that we might choose." You have chosen well my friend. I know there is much to learn even from feeling alone. Someday you will be able to sympathize with another who also feels that way, as Christ sympathizes with you. In many ways this is yours alone. We love you and pray for you and Annie always. We will think of her on Friday especially.

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  2. Amy, Cameron, and Family,
    I can't imagine the pain and emotional toll this must take on each of you every single day...for months. Living right on the brink between life and death for such a long period of time is something I can't comprehend. I pray for Annie daily. I pray for your family daily. I pray for her doctors and medical team. My children pray for Annie. We will be praying that the thoracic duct ligation will work and stop the drainage from Annie's tiny body. We will pray she has the strength to endure this surgery. Her spirit is amazing and her fight is one of the most amazing I have seen since our plunge into the world of CHD. I'll be fasting and praying for Annie and her doctors on Friday. Please know how much we love and care about all of you and know that Annie is a remarkable little baby...with a remarkable mission. We love you and wish we could do more to ease your pain. Our prayers and faith are with you.

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  3. Sometimes enduring it well means just surviving. And that's okay. Sometimes we go to bed at night hoping the next day we will be in a better place, if not physically, then spiritually. God made our minds. He understands their limitations in this life and amazingly enough, loves us anyway. He knows our doubts and fears and has compassion when we try to have complete faith but don't know how. I truly believe that the greater the trial, the greater the reward. We love you and pray that the glimpses of faith and comfort will be enough when the natural man returns with all of its doubts and fears.

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  4. Annie is in each of our prayers by name. We think about her and always call her "sweet Annie". We love her and your family! I bet Conner and Annie were little buddies up in heaven before they came to earth :) I know he is thinking about her :)

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  5. praying...I wish I had some uplifting words to give or to say. So I pray and pray.

    "Lord God, Please be with Annie as she faces these struggles. Allow her to feel the warmth of your love and peace as You are the only one able to hold her in Your arms. Please guide the Dr's and surgeons as they make decisions on Annie's behalf. we know that through You Lord there is Hope. Please continue to give her family the strength to be her advocate and voice. Embrace them in your love so they do not loose sight of You Lord. We ask these things in Your Name Jesus Christ. Amen"

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  6. I am amazed at your beautiful ability to use the written word to share this experience with us. No matter what the news, you express your feelings with grace and beauty and inspire us. You are fighting for Annie with great energy and love and that gives us hope that we might be able to do the same in our own trials. Annie is blessed to have you for her mama. We are blessed to hear her story and see her(and your) strength.

    Love,

    Teala Wilson :)

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  7. "WOW" What a very amazing post. I love to see when parents are such advocates and question reasons to why this or that? It's very interesting that you would be led to what Stanford would later suggest. . .I would tend think you were inspired so you could have a better understanding of what the proceedure would include.
    Such great remarks by the NP too.
    Sending my love and prayers, tomorrow will be a big day for all involved.
    (HUGS)
    Carolyn - IHH

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  8. Praying hard that tomorrows procedure goes well. You are teaching me with every post to trust in the Lord and nothing else will matter. He will keep his promises, always.
    Keep fighting Annie!
    Kerry

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  9. Hi Cameron and Amy. This is Marci (May), Cameron's cousin up in Idaho. I just wanted you to know I have been reading your blog and praying for your family. We love your little Annie!

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  10. Dear Amy,
    I have been following your blog. I think of you everyday and so admire how you have handled all of the trials that you have had with your little Annie. I will keep you and her in my prayers. You have always been so special Amy. I remember with fondness our Young Women days. Just know we all are hoping for the best. Love, Jan Hansen

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