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

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

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Thursday, May 13, 2010

Be Strong

Just when I thought I could breathe again! I was so looking forward to blogging good news this week, so I will start with that. On Monday morning when I arrived, I was told that the doctors had just removed Annie's atrial lines. I was excited about this and asked the nurse how many more days she thought it would be until they removed her final two chest tubes and I could hold her again. She surprised me when she said, "You know, I think we might be able to work it out and let you hold her today." With permission from the doctors, she pinned the chest tubes securely to Annie's blanket and with the help of the respiratory therapist, very carefully placed her on a pillow on my lap. While it was a bit awkward, trying to manage all the tubes, lines and the ventilator, I was so happy! For four hours, I did not move as I did not want her placed back in her crib until they really needed her there. It felt like a huge milestone and was something I had been looking forward to for two-and-a-half very long weeks. Cameron was able to hold her Monday night as well. Tuesday was better than Monday, as this time I felt more comfortable with all the extra things that accompany her into my arms. Wednesday morning, was even better still. However, Wednesday afternoon, her condition became more complicated again.

Before Annie had surgery, I was worried about so many things: How long will she be in the hospital? Will the surgery give her relief in her breathing? Will she be able to come off of the ventilator? If she can't, then what? Will I be able to manage all of her needs at home? How long until her next surgery? What will her quality of life be? How scary will a common cold be for her? Will she still be at risk for "episodes" like the ones she had before surgery?.......on and on and on. The Monday following surgery, all of these concerns were put on the shelf. The only thing I was worried about that day, and for the entire next week, was keeping her alive. Although things began to improve last week, it wasn't until this week that I started worrying about all these details again. It occurred to me that this was a good thing as it meant that I was no longer fearing constantly for her life. As I rocked her yesterday morning, I felt grateful for how far she had come, and the progress that she was finally making. Shortly after 2:00 in the afternoon, while I was still holding her, her heart rate suddenly soared to above 230 beats per minute. The nurse very quickly removed her from my arms, placed her in her crib and called for help. The doctors immediately came to her room and again the crash cart was delivered to her door. All I could think was, "not again!" "I cannot do this again!" Thankfully she only stayed above 200 for about a minute and returned to a more stable heart rate without intervention. For more than half-an-hour, she continued to spike every 5 minutes or so, always resolving on her own. The doctors decided that maybe her picc line was too deep and was aggravating her heart. The IV team was called to pull the line back and she was also given a strong sedative to help her relax. By 3:00 she was no longer having these spikes and at 5:30, I left for home, hopeful that all was well again. Just as I was pulling into my neighborhood, Annie's nurse called to let me know that she was doing it again. I was so discouraged to hear this news. I met Cameron back at the hospital and she continued to have these spikes in her heart rate every 5 to 10 minutes until after 2 am. This morning, the doctors decided to increase one of her medications in hopes that it will resolve these issues with her heart. It will take two to three days for the increased dose to take full effect. We won't know until then if this will remedy the problem. So, again, we wait and watch and hope and pray (this is becoming the routine for Annie!). Today, she has made gradual improvements. Her heart rate is still higher than they would like it and she is still having lots of arrhythmias, but they are not as fast or as dangerous as the kind she was having all through the night. Hopefully this means that the medicine is slowly starting to work and will bring a resolution in the coming days.

Lately, when people ask me how I am feeling, I usually say "tired." I feel like I prepared myself for a sprint, but Annie's recovery is proving to be more of a marathon. I have watched so many families come and go in the CICU while we keep waiting for Annie to get better. Some days (like yesterday), it is hard not to get discouraged. But, I keep thinking about a scripture that I love. It is actually the theme scripture for the Young Men and Young Women this year. It is Joshua 1:9 and it says "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee withersoever thou goest." In January, when it was introduced as this year's theme scripture for the youth, I knew immediately that it would be my personal theme scripture this year as well. Whenever I am feeling worn out, worried, tired, discouraged or afraid, I think of this scripture and remember to "be strong and of a good courage," knowing that He is most definitely with us and will never leave us to do this alone. Of this, I am sure.

12 comments:

  1. I am so glad that the medicine is working and that she is improving. I love that scripture! It is so true, He will never leave you alone. I believe He is with us more, when we need Him the most! I am constantly thinking about you, Annie and your Family. Please let me know if I can help out in any way! Annie is so strong and I hope that you have her back in your arms again, SOON!
    Love,
    Morgan Ferran

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  2. Amy,

    It was so nice talking to you yesterday. I love that scripture. Truly there are angels attending the sweet children and families at Primary's.

    Hugs & Prayers,
    Christina
    Heart Momma to Jacob

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  3. I am SO happy that you've gotten to hold her! I remember the first time I got to hold Elaina after her OHS, all the tubes and wires... the balancing act and desperately trying to hold still so that the nurses wouldn't put her back in bed... Pure bliss!!! I can guarantee that it did as much good for Annie as it did for you! Hang in there! I know it's hard to watch other heart babies come and go, but Annie is on her own journey. We spent 143 days on one admission, over 90 of those days were in the PICU/CICU, and so I understand how discouraging it can feel to watch others come and go. I am so proud of Annie, she is doing such a great job, and so are you! Keep being strong for that precious little one! You are in my thoughts and prayers.
    HUGS!!!!
    Hollie

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  4. hang in there Amy and Cameron. So glad you got to hold her, that is awesome. You are still always in our prayers, with love to your whole family.

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  5. I know you have lots of family and friends that are very concerned about you, but just so you know Cameron's office is very concerned about you, Cameron and your whole family as well. Most of us don't know you, Amy, but personally I know Cameron as a great attorney and a person of kindness, integrity and just an all around great guy. He has been there for me and my husband personally. Knowing Cameron is a very busy attorney, plus this and the rest of the family on his mind, making an overflowing plate for him, instead of bothering him with updates we find ourselves checking your blog. Right now I know the day to day stresses are hard enough to get through, but thank you so much in taking the time in writing this blog, it keeps us all informed.

    My daughter, Ammie, went through her own scare of having her baby in November. It wasn't even close to your experience, but you realize how fragile babies are, but in the same sense so resilient. This experience will make your blessings seem even sweeter, it is just sad you have to go through rough times to have that sweetness intensified. It really makes those normal and healthy things in your life seem even more special.

    Even if all of us don't say it directly to you, just know that we are thinking, hoping and praying for your entire family.

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  6. Perhaps the biggest trial of all is not the in details, but in the wonder of "How Long?". I will pray for you to have sustained energy! H

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  7. Yesterday I thought of that same scripture while I was holding Leah in my arms. I was singing the song from the YW General Broadcast. The part that we sang, "Be strong and of good courage. Be not afraid stand firm in the faith for the lord will be with you wherever you go. Be his. Be one. Be strong." Your blog always makes me cry. You are such a wonderful aunt and so brave. I love you!

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  8. We have come into each others' lives at this moment for a reason and though I don't know the reason yet, I am here to support you in whatever way I can. Your daughter is beautiful. Please know that she feels your love always. You, your daughter and your family are in my prayers.

    Staci (angel Bridger's mom)

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  9. Amy,
    I just came across your blog in a round about way....I am praying for you and Annie. Recovering can always be so uncertain with ups and downs...it drives me crazy. I can't imagine how scary and emotionally draining it must be on you and your family to be taking two steps forward and one back so often. Annie and her doctors and team of caregivers will be included in our family prayers and the individual prayers of all my little ones!! Our faith is being used on your behalf. You are an amazing person whose light shines--even through your blog!
    Nicole
    www.perfectbrokenhearts.wordpress.com

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  10. Kristen SmeltzerMay 16, 2010 at 12:20 AM

    I just found out about your sweet baby, Annie, and wanted you to know that Mike and I will be praying for you all. I'm so sorry that you have to go through this and I'm crying as I read through all of your posts. Keep that remarkable faith; remember that the Lord has experienced all our pains and sorrows; He understands what you and Cameron are going through as no one else can; He weeps with you just as He wept with Mary and Martha; He will rejoice with you, too, as you experience the miracles He has in store.

    All our love and prayers,
    Kristen Smeltzer

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  11. Amy,

    I have a lot of time to ponder now that I am a new mother. It seems that I spend so much time feeding Leah. These last few weeks, as I hold my baby, I ache that you can't hold yours. And I've done a lot of thinking. I have thought so much about the pain that Annie has to go through and I wonder why.

    My thoughts lead me to the conclusion that her pain is for us. She is too little to learn the lessons that pain can teach. Annie must indeed have been a brave spirit to volunteer for this.

    The Lord often taught in parables. So I call what Annie is teaching me, Annie's Parable. There are many lessons to learn. And for every person, it can be different. There is the simple lesson of patience. Enduring trials to the end. Knowing that "all these things shall give thee experience and be for thy good." The lesson of trying everything to save a life, or in symbolic terms, a soul. Each soul is worth every saving effort possible. He loves the hundred and will leave the ninety and nine to find the one. Or, when I think of the pain you are willing to let her go through, pain you would only submit her to if you thought the outcome more valuable than anything, I am reminded of the atonement. To watch His innocent Son suffer through tremendous amounts of pain, must have been excruciating. Our Father could only let this happen knowing that it was the only way to save us all.

    So as I have contemplated Annie and her purpose on this earth, I have found myself changing my prayers. I no longer pray that Annie will recover quickly. I pray that all who are touched by her life will learn the lessons they are meant to learn. And learn them quickly so that Annie may enjoy a miraculous recovery.

    We can't wait for the day you bring her home. We love your brave daughter and the brave woman you are.

    Sharon

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  12. Amy,

    I continue to check in on you through your blog when I can't see you in person @ the hospital. I'm so glad you got to hold Annie again, if only for those 4 short hours. May her heart continue to beat and get stronger every day. She will be in my prayers as I hope she will be able to come off the ventilator. I will also be thinking of you and the amazing mother you are. May you find strength in Annie, your other children, Cameron, and of course ~ Christ. May He bless you with many miracles ~ big and small.

    Emily

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