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

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

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Saturday, May 8, 2010

Never The Same

Annie is doing well. Thankfully, this week has not been nearly as exciting as the last. She is finally making progress- slower than I would like, but at least it's progress. Over the last few days, the doctors and nurses have removed two femoral lines, two chest tubes and her foley catheter. She is starting to be weaned from some of the many medications she is on and they are starting to feed her a very small amount of food again (currently, a half teaspoon an hour). She is VERY slowly starting to lose some of the extra fluid that is in her tissues. The main goals for the upcoming week (besides getting rid of more fluid) are: 1) to get her atrial lines out of her heart as they pose the biggest infection/ thrombosis risk; and 2) to begin to wean her from the ventilator. Once the lines are out of her heart and the last two chest tubes are removed, I will finally be able to hold her some (depending on how willing her nurse is to bend the rules). I can hardly wait! The more awake and alert she gets, the more anxious I get to hold her again. It is frustrating to only be able to rub her head or touch whichever foot or hand is not currently occupied with an IV and all of the accompanying gauze and tape. I can't help but feel like she is missing out on so much. By the time we bring her home again, she will no longer be a newborn. Babies are supposed to spend the first few months of life wrapped up snug, sleeping, eating, and growing. Annie is unable to do any of these things (except sleep when she has enough pain medicine on board) and is instead recovering from major open heart surgery. I feel so sorry for all that she is going through and just hope that we can make up for the lost time as she heals.

As some of the bandages have come off of Annie's chest this week, I have been able to get a really good look at the incision running down her mid-line and the sutures holding it together, as well as the several small holes in her chest where central lines and drainage tubes have been placed. Just two weeks ago, she had that beautiful flawless skin that all babies come with. You would never have guessed by looking at her that she had such serious problems with her heart. She now has these scars that she will carry with her for the rest of her life. I know it's trivial when looking at the big picture, but a part of me feels sadness, even for this. In this small way, she will never be the same again. Of course, I know that these scars are the result of her life being saved. Would I trade them for her perfect baby skin to be restored? Obviously, I would not. I am so grateful for the skill of the surgeon; grateful that something could be done to preserve the life of my baby daughter; grateful that I have her here with me now. It is so interesting to me that while I feel some sadness for her scars, I feel deep gratitude for them as well.

We found out that Annie had heart defects on a Wednesday morning. Friday night, I spent most of the night on the couch because I could not stop crying and I did not want Cameron to wake up. After a very long night and just a few hours of sleep, I woke up Saturday morning and really knew for the first time since receiving the news that I was never going to be the same again. I had to accept that this was going to be one of those experiences that would change me forever. I realized that morning, that while I could not choose how things would turn out for my baby, I did have some ability to choose how things would turn out for me. I could let this experience make me angry and bitter and spend the rest of my life feeling cheated, or I could exercise my faith and grow from the experience. I could let this be an opportunity for my testimony to be strengthened, or I could let it fade in the sadness I was feeling. I could focus on the terrible moments and choose to never see the sweet ones, or I could count my blessings, even on extremely difficult days. This was the first of two goals I made that morning (I will write about the other goal another day): to come through this with my faith, my optimism, my testimony and my trust in God intact; to not be bitter and angry, no matter the outcome. Obviously, this is a very long term goal as we will deal with Annie's heart defects for her entire life. I am finding that some days it is easier to do this than others. I know that, just like Annie, I will always carry some scars from this battle for her life. The bottom line is that neither one of us will ever be the same. I am praying, that even on sad and bitter days, we will always leave room for optimism, gratitude and growth.

8 comments:

  1. Amy, thank you for your faith. I have a hard time reading your posts, what with my postpartum and all. But it makes me feel better that everyone else cries too. You are the best. We always pray for you.

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  2. Dear Amy,

    Even though I talk to you often I wanted to leave a written message to you. Your blogs touch me so much. I am so grateful to have a daughter such as you. As Annies' grandpa it has been hard to see her put through so much. And as you father it is difficult to watch your suffering as you tenderly love and care for Annie. As I think about what you are going through my memory drifts back to a special experience I had with you when you were a little girl (about 6 years old). You probably remember. You had been to my office many times and loved riding the chair up and down and playing with the air and water syringes. Finally the fateful day arrived that you had a cavity. You couldn't have been happier. Finally we were going to be able to use the handpieces and other equipment and have some real fun. I remember trying to be so careful and gentle as I administered your first dental injection. Feeling quite confident that I had given a totally painless shot I was surprised at the look on your face. It was a look of total bewilderment. Your eyes started to mist over and your lip started to quiver and then with all the courage you could muster and probably seeking some reassurance from me you said " love you Dad." I didn't know how difficult it would be to do a simple filling looking through tears. Well, againg I find myself looking through tears as I watch the pain my daughter and grandaughter are going through. Only this time instead of looking to your earthly father for reassurance we all hve to look to our Heavenly Father. And even more surely that your earthly father loves our Heavenly Father loves you and is infinitely aware of all you are going through. I know you have felt His presence. I am grataeful for such a wonderful daughter and grandaughter. I am grateful for a loving Father in Heaven and the Savior He has provided. I am grateful or the peace He has granted that "everything will be okay".

    Love, Dad

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  3. So glad to hear little Annie is progressing! Thank you for sharing your journey with us - your testimonies are truly inspiring. We continue to pray for you!

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  4. You're right. You'll never be the same. I'm not the same. I had a really tough pregnancy with Elaina, and kept telling myself that the restrictions and bedrest were worth it for a "healthy baby". Little did I know what awaited me at her birth. As I trace her numerous scars, I am reminded daily of the earthly trials she (and I) have faced. I tell people that they are her medals of honor! Even though I am changed, I wouldn't have it any other way. It has changed me for the better! I truly look forward to meeting you! Hopefully sometime soon? Are you planning on attending the IHH picnic on Saturday? (If you can tear yourself away from Annie, I know what a strong pull she must have on you!) If not now, then the time will come. You're doing a great job, and I hope you had a wonderful Mother's Day!
    Hugs,
    Hollie

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  5. I hope you had a wonderful Mother's Day because you are a wonderful mother. Thank you for sharing your journey and lifting so many others with your positive attitude and testimony. We should be lifting you. Annie is blessed to have such a strong mother.

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  6. Thanks for sharing your thoughts and feelings. Yes, you are right . .this changes your life forever. . .and though the trials at the time seem so insurmountable, it's growth that could not achieved any other way.
    I honestly believe as mothers we were given these heart babies because God knew we were strong and loving, not weak or without faith. I am glad that there have been some improvements and that you will get to hold her very soon, if not already :0)
    I hope you didn't mind that I copied the picture from your blog to include Annie in the IHH newsletter.

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  7. Your little Annie and your expressions of faith are beautiful! Thanks for sharing!

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  8. My dear Amy Annie,
    I just read your most recent post, about all that you and Cameron went through the day of Annie's second surgery. My heart literally aches for you, and the tears spill over. It is hard for me to watch little Annie Grace suffer so, but the most difficult part for me is watching you, and wondering just how hard it must really be, and worrying about you. I see the strong woman you have become, and I know that your faith will continue to sustain you through each and every moment of every day and trial you will face.

    I am grateful for Cameron, for this good man you married, and for the way in which he is always there for you; I am so grateful you married your very best friend. I remember well the strong feeling I had when I first heard him speak, that the two of you had much in common, and how I hoped you would someday meet. I am so thankful that "someday " did come, and for all the love and joy he has brought into your life. I am grateful for the 6 beautiful grandchildren the two of you have brought into my life.

    To this day I remember very clearly what you looked like at Annie's age, and how thrilled I was to finally get a beautiful little daughter. I remember in that recovery room, way back in 1975, I kept drifting off and then waking up again, asking the nurse one more time if I really did have a little girl. I was filled with an indescribable joy and constant thoughts of white lace and bright colored bows with which I would someday adorn your hair. And then I cried, over and over. I remember it like yesterday. And then when you finally got enough hair to really work with, how you loved to wear it in french braids. I long to see Annie one day in french braids.

    You were a lovely child to raise, so very happy, always helpful, always grateful. You loved the out of doors, always, and wanted to be out fishing and camping with your brothers and your dad from the very start. You had a love of the beauties in nature from a very young age.

    I remember once when you were about 4, we were driving south on State Street in Sandy, and you were looking east out the window at the beautiful red and yellow patches covering the autumn Wasatch Mountains. Suddenly, I heard you exclaim, "Heavenly Father did such a good job!" It is one of the sweetest memories I have of you and I carry it with me always.

    What a wonderful daughter you are, always thoughtful of others, always the one to go out of your way to make others feel included. Last Christmas that "other" was me, and I will never forget what you did. My heart overflows with love for you, my sweet daughter.

    Your posts have been so very touching to read. You have a gift with the written word, and these words you have written here will be a treasure for your family forever, and someday your own grandchildren. Please know that I am here for you always, and how very, very much I love you. I know that Annie is in your heart every minute of every day; please know you are both in mine.
    Love, mom

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