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

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

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Monday, April 26, 2010

How Much?

How much can her little heart take? How much can my heart take? These are the questions I kept asking myself today, by far the hardest day we have had so far with our Annie. This morning when I arrived in Annie's room, things seemed pretty much as they have all weekend. We have been waiting every day for her to make a move and show some progress. The first step that she needs to take is tolerating the diuretics they need to use to drain some of the fluid off of her very swollen body. Every time they try, her blood pressure drops letting them know that she is not ready.

Within an hour of my arrival this morning, her heart rate suddenly sky rocketed to above 230. The nurses called for help from the doctors and for the crash cart to be brought to her room. Her room was immediately filled with all kinds of people and equipment as they tried to figure out how to help her. After a few minutes, her heart rate started to come down some on its own, and the crowd in her room started to dissipate a bit. They decided to administer a drug that is intended to bring down the heart rate, but as soon as it hit her system, her blood pressure plummeted. At this point, they called for the crash cart again and requested that the paddles be ready if needed. I was standing against the wall, watching all of this happen and trying to not cry because I really didn't want to be escorted from the room. It felt as though every person that worked in the CICU was gathered around Annie's bed and clustered outside the door waiting to help. At one point, the charge nurse asked me if I was all right. I nodded my head yes, but immediately started to cry. If only she hadn't acknowledged me, I might have held it together. They administered epinephrine and lots of fluid and slowly her pressure inched up to a level that was still low but certainly more acceptable than where it had been.

While she made improvements initially, as the afternoon wore on, she again started to have spikes in her heart rate and dips in her blood pressure. It seemed that nothing that the doctors were administering was helping and eventually they did not seem to know what else to try. They would throw out ideas of what might help and then discuss it and decide why that would not work or would make things worse. I was actually getting sick to my stomach as I watched her continue to decline and listened to the doctors running out of options. At one point, one of the nurses mentioned that when she changed the bandage on Annie's chest, she noticed that it seemed to have some air trapped underneath. Some of them looked at it and felt that maybe they should have the surgeon come take a look. By this point, the feeling in the room was desperation and exhaustion as she had been declining for several hours with the alarms ringing incessantly to warn of her dangerously high heart rate and low blood pressure. Dr. Burch came to her room and within moments, he was requesting sterile instruments and drapes and they were preparing to go inside her chest again. We stood just outside her room and watched this doctor open her chest and hold her tiny beating heart in his hand. At that point, all I could think to do was ask for prayers, so I sent a text to those that are already programmed in my phone to "please pray for Annie now." For the next 20 minutes I watched (with my own heart in my throat) as the surgeon worked on her, pleading with Heavenly Father to help him help her. When he finished, her numbers were a bit better, but still not very good. He explained to us that he thinks she is still trapping air in her right lung and all of this pressure has caused a small part of her lung to rupture. This means that air is leaking into her chest cavity, putting even more pressure on her heart and probably increasing her heart rate. Today, he installed another tube into her chest to drain the air that is building up around her heart. He is very concerned that the fact that she is still trapping air means that she is still having obstruction of her airways on the right side. He said the procedure he did on Friday is the most drastic thing that can be done to relieve the pressure on the airways and he is not sure that anything else can be done surgically to remedy this problem. He hopes that as the extra fluid is drained from her body, and the swelling around her heart decreases, maybe the pressure on her airways will decrease as well and give her some relief. Tomorrow, they will scope her airways and see if they can find exactly where the obstruction is occurring and what, if any options we have. He told us before he left tonight that Annie is very sick and that her condition is "tenuous." Not very reassuring words. However, through the rest of the evening her heart rate has slowly crept down and things are starting to feel somewhat stable again. We will see what tomorrow brings. We could really use some good news. Thank you for your prayers- keep them coming as this little girl needs all the help she can get right now.


12 comments:

  1. You guys are in our prayers & thoughts. We will think of you today & pray for you guys. She is such a little fighter. ( girls are so tough:) Thanks for the update & sharing all that is going on, we love you! Stay strong!!

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  2. I am sorry things are so hard right now. I am praying for Annie and hoping she can get some of the fluid off. Please let us at IHH know if there is anything we can do for you.

    Hugs & Prayers,
    Christina
    Jacob's Momma

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  3. We are praying for Annie as well as both of you!!
    Ryan & Missy

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  4. Amy and Cameron I love you guys soooo much. I can't even imagine what you must be going through or feeling right now. I know that Heavenly Father will take care of everything. Remember that Angels are with these special little spirits. She is sooo beautiful and she has many important things that she needs to do. I know she is on the prayer roll, but I still needed to add her name as well as yours and I told the temple worker that she really needs Heavenly Father's help right now and she told me that she got goose bumps so I know that everything will be allright. You are in our prayers and we love you soo much.
    Hugs,
    Tammy Anderson

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  5. Annie is in our prayers and thoughts. I will be thinking of you and Annie today and I will be hoping for some good news. She is so strong and so beautiful. I know that Heavenly Father with take care of her. Thank you for keeping us updated. Stay strong! We love you!

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  6. I just wanted to let you know that I am thinking about you and praying for your peace and comfort as well as Annie's. I'm sure she's had a blessing, but I know that was one of things that helped me through some of the rough times when my baby was in the CICU. She was very "tenuous" for some time and her outcome looked bleak. It's been a very long road, but she is continuing to improve. I know that it was because of the priesthood blessings both she and I received. If nothing else, a blessing will bring all of you a sense of peace and comfort. You are a strong amazing mother and I just want you to know I'm thinking about you!
    Heart Hugs,
    Hollie

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  7. I saw that Annie was struggling on the IHH forum today. I do not know you, but I do know what it feels like to watch your precious little one fight for her life. I'm so sorry you are hurting. Know that you are not alone! I copied this quote from another heart blog when I was having a bad day: "Heaven's kindness will never depart from you, regardless of what happens...Bad days come to an end, faith always triumphs, and heavenly promises are always kept." (Jeffrey R. Holland) I hope for better days ahead for your baby.
    --Shannon (Mom to Ellie-tricuspid atresia, TGA, ASD, VSD)

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  8. Just wanted you to know that I am praying that today is a much better day.
    Nothing about being a heart mom is easy and there are days you just want to sit in a corner to cry and ask why? I do not believe God give us these children because we are weak, but are strong. Please know you have a whole strong army of heart moms/parents praying for you and Annie. We do not want to be in your way, but if you would like a visit just to be able to talk, please let me know.
    (HUGS)
    Carolyn Quigley
    President, IHH

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  9. We are sending lot's of prayers your way!! You are such an amazing family, I admire all of your strength and faith through this truly difficult time. We hope nothing but the best for little Annie and are so glad we have had a chance to be updated on her situation through this blog and all the emails. I hope that today has brought good news, and that she is improving. We love you guys!!

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  10. My heart hurts for you I am praying for your little annie I am send our love your way. Just remember tomorrow will be better and your little annie is so so strong. God knew that you could take care of her best and thats why he sent her to you ....Let me know if I can do anything for you

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  11. We are praying for you all. I just can't stop thinking about Annie and how hard this must be for your family. Hang in there. I am so sorry. Just remember, you don't always have to be strong-it's okay to let it all out.... just never lose your faith in the Lord because he will never leave Annie's side or your side. Love you guys....

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  12. Amy, may the Lord hold together Annie's little heart with his mighty hands...praying for you. Love, Heather Griffin

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