New promises…

d9ecd75719d54f127180f51a76137f5eHappy Thursday everyo – I’m terribly sorry. It is in fact Thorsday, not Thursday. I apologize. 😛 Okay, so you all know that my mom is amazing, wonderful, and an overachiever. So knowing who she is, it’s obvious that she is the one that always updates the blog. But now that the whole transplant/recovery is pretty much over, there haven’t been daily updates on here. I was talking to Mom the other day and I decided that I need to make a more regular appearance. I was a little concerned about what I would blog about since usually there isn’t any real new news. She said that this blog is about my “second chance” at life. Not just the procedure, but the journey – including my personality, quirks (that may or may not be new), how I have grown and changed, and what I am doing with my life now. As I (personally) post on here, you will get to know me more and I hope that I am not so weird and crazy that you all run away scared. Ehehe. I want to post something on here at least once a week. At least, that’s the plan… Next time, I will kind of introduce myself…again. (I have already done it, but it was before my transplant and before I was comfortable with who I am and my personality.)

I hope that you will enjoy getting to know me and my over all ultimate awesome weirdness and nerdyness!

— Sarah

Heart to Heart


See all these women? Many of them are my friends. And many of them are strangers. A lot of them shed tears and prayed their hearts out for our sweet Sarah. Some of them have sweet angels they love in Heaven. Still others of them have been through horrific experiences I can’t even begin to imagine. All of them have felt heartache and pain as they’ve watched their children suffer, or suffered themselves. …And ALL of them have been affected by someone’s very special heart.

These are just some of the courageous and strong women of Intermountain Healing Hearts, a support group we joined while Sarah was waiting for her angel heart. We had the opportunity to meet many of our new friends at the annual Heart to Heart Luncheon they held yesterday. It was amazing. So fun to finally meet some of our cheerleaders, our chocolate suppliers, our care package and hug deliverers. And we feel really blessed to be a part of a sisterhood like this. The feeling in the room was true compassion, charity, and love. Strangers, but friends through the fires and storms that have brought us together. It was kind of a lonely path we walked when Sarah was small. We felt like the only ones in the world with a special baby like her. (We knew it wasn’t true, but it really did feel like that.) Support groups like this can sometimes bog you down as you help carry others’ heartache and pain, but once you find the right balance in being involved, helping, praying and keeping your focus where it belongs, I believe it’s a blessing.

20140517_131735aThe room was beautiful, the food was great, the little goodie bags we got were wonderful—complete with the group picture (printed for everyone during the luncheon), one of Hilary Weeks’ “clickers” to count our positive thoughts, a beautiful hand-made charm bracelet and…yes, a full-sized Utah Truffle bar. (We’ve all gotten hooked on the little ones at the check-out line in the Primary Children’s cafeteria.) They showed a slide show of the moms/kids that were in attendance and included their diagnosis. It was sobering to see how many beautiful children and families are affected by heart defects and anomalies. And that was just a sampling of the ones that belong to this group! After the slide show, one of my all-favorite Christian singer/song-writers, Hilary Weeks spoke to us about our trials, the personal attention and grace of a loving Heavenly Father and Savior, and the power of positive thinking. She sang some of my favorite songs, and ended by singing along with the video of “Beautiful Heartbreak”. It was perfect.

When it was over, we visited with some of our friends, collected long-awaited hugs, and met new people that are on similar paths as Sarah’s. We were introduced to one mom in particular, whose 17 year-old daughter was recently placed on the transplant list. As we talked, we discovered how many heart defects and surgeries they had in common, and how very similar their teenage lives were, including liver damage and PLE. It felt so good to be able to offer support and love, and I hope they will reach out and lean on us through their journey. The best part about talking to this young woman’s mom was that she could actually SEE (by meeting Sarah) that her daughter’s life can be so much better than it is now. I pray we can help her though her journey, along with the many other mommies we met who have children with HLHS, fontans, and PLE. I would love to be able to be a strength to them, and to offer my empathy and love and show them there is much hope (especially when it doesn’t feel like it).

20140517_142106After we left, as we were walking down the hall, we crossed paths with Hilary and her sweet daughter. I told her I was so glad to have run into her again because I wanted to tell her that she’s one of my favorites, and that her song, “He’ll Carry You” had a great impact on my life during one of the scariest periods of Sarah’s recovery. I heard it on my Hilary Weeks Pandora station when I was getting ready for work one morning. I looked it up on Youtube and played it over and over and over. The tears streamed down my face and I felt as if I was wrapped up in the huge, warm embrace of my Savior. Everything she wrote in that song is really is true. He does know, and did lift my load, and carried me.

I love how sometimes, that love happens when you hear a true and beautiful song in your room when you’re getting ready for work, and sometimes it happens when you hug a friend that’s a stranger that prayed daily for your daughter’s recovery. That’s charity…Christ’s love in its purest form, it’s warm like a blanket, and it’s amazing.


Good news from weeks ago

I realized that I never posted  our good news from more than two weeks ago! So sorry to have forgotten to update. We told a few people, and it just slipped my mind after that…

Elizabeth, the transplant nurse practitioner called Sarah at the beginning of May to let her know that her antibody-induced rejection is NOT caused by Donor Specific Antibodies (DSAs). These are antibodies that her body could make (and did in the beginning) to specifically attack her angel heart. I’ve deduced, using my limited knowledge and a little logic, that the antibodies that have induced the mild rejection then must be just normal antibodies in her immune system. They fix this with a simple increase of one of her immuno-suppressants, and trying to find that perfect balance again. We are so happy that she no longer requires the five other IVIG treatments, and are hoping that her biopsy in June will show a change for the better. We also discovered in her antibody panel that she does not have immunity to a few things and needs to get a few of her immunizations re-done. She’s feeling very sympathetic towards all the babies and sweet kindergarteners getting shots right now. Sure stinks, but a small price to pay to keep her angel heart and body healthy!

So grateful for modern medicine, technology, and all these amazing people in charge of her care. We are so blessed to have such an incredible team of careful and caring doctors, nurses, pharmacists, techs, and others in her medical team to help her in this journey. Things would be so different (and scary) without all of them!