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

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


Tuesday, April 27, 2010

A Better Day

As I am sitting here tonight, Annie is more stable than she has been in 2 days. Thank goodness, because I feel confident that I could not have endured another day like yesterday. Late last night, we finally left the hospital after the nurses told us repeatedly how terrible we looked and promised they would call if anything changed. Between their 3:30 am phone call to us and our several phone calls to them during the night we did not get very much sleep. Throughout the night, she continued to have spikes in her heart rate at times, leaving everyone to wonder what was precipitating this. They increased her medication that slows the heart rate to nearly the maximum dose and worked to find the right level of sedation for her. By the time we arrived this morning, her heart rate was fluctuating between 115 and 130- lower than I have ever seen it. However, she seems to be very fragile and easily agitated right now. Even having a bandage changed can make her heart rate climb rather quickly. For this reason, the doctors have decided to hold off on the bronchoscope for now as they don't feel that she will tolerate it very well.

The goal since yesterday has been to get her heart back on the pacer, but until this morning, it has been racing too fast for them to "capture." Now the rate was lower, but they were still unable to pace it and believed that the wire was not working again. They were talking about the possibility of needing to go back in again to remedy this. Of course, I was not happy with the idea of another go-round inside her chest but knew that this might be the only solution to the problem. An hour later, one of the Dr. Burch's assistants came to try her hand with the pacer wires and was able to make it work- definitely an answer to my prayers. I was so relieved!

Throughout the day, her heart rate gradually increased. This would cause the nurses and doctors to turn the pacer up higher so that the rate of the pacer was faster than (and therefore not competing with) her own heart rate. By about 3:00 she had gone from being paced at 130 this morning to her own heart racing in the 160's. Finally, she settled down to being paced at 156 and for four hours has not raced above this at all. Her blood pressure has remained stable during this time as well. This is the best four hours Annie has had in the last two days. I just hope she continues to remain stable and we can work towards removing all of the extra fluid from her body and closing her chest soon.

This little girl is a fighter. I feel like we were very close to losing her yesterday, but her determined little spirit just would not quit. The doctors have told me repeatedly that they are very surprised at how well she has tolerated all of the drastic ups and downs in pressures and rates- much better than they would expect. I am sure that the sudden mass of prayers brought on by my text yesterday was noted in heaven. I can only imagine the army of angels that must have responded to the call. Certainly, those prayers were heard as Annie is with us still. I am so grateful for this.


  1. I'm glad things have calmed down a little. Hoping today is a good one!

  2. I'm happy that there is some improvement! Baby steps! Some things (out of many) that I've learned is that not only are these heart warriors stronger than the doctors predict, but they are they ones that set the pace. I would repeatedly tell myself, "slow and steady wins the race". The doctors also have to give you the worst possible outcome, it's up to us as parents to advocate for our children and remain as positive as possible (even if it doesn't seem positive.) Elaina's chest was left open for 10 days, and while that was not ideal, it was necessary and I was grateful after the fact that they didn't have to reopen her incision to get quick access to her chest. There are small miracles that precede great miracles. Hang in there! I know that some day we'll be able to meet in person, and I look forward to getting to know you better! You're doing a great job, and you're a wonderful mother and I'm sure that Annie agrees!

  3. Amy,

    You don't know me, I'm a fellow heart mom. I just want you to know that I have been following little Annie's journey and have been praying for her. I am so happy today is a better day for Annie and I hope that the set backs are far behind you.

    Deanna--Gracie's mom

  4. Amy,

    I just wanted to let you know that our family is pulling for you. Every prayer that is given in our home includes a plea for your sweet daughter and for strength and comfort for your entire famiily. Every time I drive by your home I pray and hope for you. Please know that we think of you daily just like so many others. May you be buoyed up by your incredible faith and by the love that we all send.


  5. I stopped by after hearing that Annie was in need of some extra prayers on the IHH forum. My heart aches for you after the experience you had this week. I know firsthand the absolute helplessness of watching your baby crash and seeing the many options for treatment fail. I am so glad that she is stabilizing a little today and I will continue to hold my breath and pray for your sweet little girl. These precious heart babies have incredible fighting spirits. We have had more miracles than I ever thought I would witness and I pray that Annie can have many more miracles brought by the hands of skilled medical professionals in the coming critical days.

    Heart Hugs!

    mom to Grant (HLHS, Heterotaxy, etc.)