The Drop-Off

I really should have posted these pictures a couple of weeks ago, but I was waiting for them to get downloaded from Steve’s phone, and then I was waiting to hear from her and see how she was doing in her college adventure before I posted a report. She obviously beat me to it, and what a wonderful report it was! (Click here to read it.) Miss Sarah is LOVING her new Salt Lake City life!

My mom always says it’s easier to have people you love go away when you can “see them in a place”. When you picture where they live, what they’re doing, and what things look like, it’s easier to picture them doing regular things and being content and happy. Sarah so beautifully explained what she’s doing, so here is where she lives and what things look like…

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Sarah lives at The Plaza Hotel… really. It’s kind of like the Tipton, except without Zack or Cody, or…well, anything else their “suite life” has in it. It’s dorm-style housing just for the girls from LDSBC on three floors with a commons room on the main floor and shared kitchens on two floors. It’s located in the train’s “free zone”, a block and a half from the school, City Creek Mall, her pharmacy, and Temple Square. (The Gateway Mall is only a few blocks away, too.) When Sarah goes out her door, she can look out a huge window and see the temple. 🙂

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Here’s Sarah’s corner of the room. She also has her own desk and wardrobe. Her room has a sink outside the bathroom, a small fridge and microwave, and small balcony where they can step out and breathe in the not-so-fresh smoggy Salt Lake City air. But it’s pretty.

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Here’s a picture of the unpacking. Finding homes for all the necessities. You know, like popcorn, bagels and laundry soap. While we were helping her settle in, we got to meet her sweet roommate, Amanda. Hearing how quickly they became friends and how well they have gotten along has done my mother heart so much good. If you love the people you live with, and actually like to be with them, too, life can be pretty wonderful. I believe that their roommate match wasn’t just two people who needed a room and were randomly stuck in one together. I think they really needed each other. Heavenly Father knows our worries and fears. He listens to our prayers. And sometimes what he wants for us matches perfectly with what we want. It’s such a comfort to know that she’s happy and loving her new, grown-up, independent, testimony-building, college education-seeking life.

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LOVING THIS PLACE!

The good-byes were a little hard, but I knew they would be. From this moment on, it will never be the same. It will be amazing, scary,  awesome, frustrating, incredible, challenging, and wonderful. But it will be different. We look forward to having this girl back home for visits and seeing the incredible changes that are sure to happen in the coming months.

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This one had kind of hard time for a few days. Both of his big sisters left him in 4 months’ time, and he’s feeling a little freaked out being the oldest at home and living in the basement without them. So glad they got to strengthen those relationships before the girls grew up and left home.

I kept it together pretty well until we got in the car and drove away. I had so many worries (which were mostly gone after Sarah’s first text message to me), but the most overwhelming feeling that actually brought the sobs to my throat was the gratitude I felt for her donor family. We still haven’t heard anything from them, and I wished so badly I could tell them of the incredible opportunity they gave to Sarah. I wish I could explain to them how much it means to us to see her living a life we NEVER expected her to have. It’s still a miracle to me, and I will be forever grateful for that one unselfish decision that gave her this second chance.

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20150110_174253~Julia

Liver, Lunch and Love

A couple of weeks ago, shortly before we dropped our girl off for her college adventures, I took Sarah down to Salt Lake for a liver clinic appointment. We left super early in the morning to be there in time for an 8:00 appointment at the U. We’ve decided we really like that clinic. Kerin, the nurse practitioner we see, is super nice and thorough. After casual conversation, she examined her and then talked to us about her last MRI in July. Comparing it to the one 8 months before that, Sarah’s liver is not only smaller, but the nodules seem to be smaller, and everything indicates that her liver is getting better. Because severe liver damage in congestive heart failure patients is so common, it has been re-categorized and is now referred to as “cardiac cirrhosis”. The blood wasn’t pumping back out of Sarah’s liver the way it was supposed to, so her heart was causing damage to her liver. When we “fixed” the source of the problem, her liver responded in kind and is now healthier than it’s been for several years (at least). It will take time with her healthy new heart for her liver to heal completely, but it’s well on its way! She may always have nodules and scarring, but the kind caused by heart failure are very rarely cancerous or turn into anything to be concerned about. Kerin suggested that because this trend of healing should just continue, she was going to talk to the team about long-term plans. She didn’t think there would be a need to repeat the MRI every six months anymore, and that maybe our visits could be annually, or even release Sarah from their care completely. The heart transplant team can keep an eye on her labs that show liver issues, and refer her back to clinic if there are indications of problems. Amazing.

We took a walk across the sky bridge to Primary’s to visit nurses and say hi to some of our favorite people there. We got to see a couple of our favorites that were working that day, and were amazed at the techs and nurses she didn’t have often that remembered her so well (by name) and were so happy to see her. Emily (one of our favorite nurses) said that she couldn’t believe how different Sarah looked and was so grateful to see the “after” of one of her sweet patients. She said it’s really a treat to see them when they’re healthy, and it doesn’t happen often enough. We went over to say hi to our friends, The Rainbow Kids Palliative Care Team, and wandered around until we found their new offices. We gave reports and got hugs and were invited to the lunch they host every Tuesday for parents of their patients. We left the hospital for a while to buy Sarah’s books and supplies, and get a couple things figured out for school at the LDSBC the next week. We headed back to the hospital for free lunch, and to see the rest of the Rainbow Kids. Usually when we visit, we only get to see a couple of them. We were go glad (in this transitional time for Sarah) to have been able to see all of them that day! I’m not sure how many times I heard them say things to her like: “Ya know, Sarah, we’re right up the hill/just a phone call away/your support away from home/here if you need anything….” I was so relieved especially to hear one of them say, “Sarah, you’ll always be one of our kids.” I hope she will use that resource to help her out if she’s ever lonely or struggling and doesn’t want Mom or Dad to know. It made me feel a little better about her being away from home.

During the lunch, we met a sweet mom from the Logan area whose newly adopted baby daughter was there recovering from her first surgery. She was born with a few of the same heart defects Sarah had. We had a great visit and loved hearing her tell of her sweet angel’s arrival and journey so far, and then shared Sarah’s story with her. She was so grateful to have met a fighter—a survivor—so early in their journey that could give her so much hope for her sweet baby. I love that Sarah can be that for people. It makes my heart smile.

Because we were talking with our new heart friend, we didn’t get a chance to say goodbye to all the Rainbow Kids, so Sarah and I wandered the hallway back to say goodbye. On our way there, we ran into Sarah’s transplant cardiologist, Dr. Everitt, who we love so very much. 0106151340It was something we were hoping so badly would happen because it was her very last week at Primary’s. She has taken a position as the head of Cardiology Transplant department at Denver Children’s Hospital. She is so amazing and we know that she played a very big role in saving Sarah’s life. Because of her expertise, her ingenuity, her compassion, and her stubbornness, she was able to make things happen…just for Sarah. Besides us, there are a whole bunch of parents who entered the transplant world whose “babies” were in her care that are so sad to lose her. There will definitely be a part of each of us that goes with her to Colorado. I think it may have been a little easier on us though, because with Sarah’s imminent transition to the U for adult care, we were going to have to say goodbye soon anyway. We’re just so grateful that things worked out perfectly that we had an unlikely meeting in the hallway and she took a minute so we could all say goodbye!! Always amazed at those non-coincidental tender mercies…. We are happy for her to have this opportunity, and the kids in the Denver area are so lucky to have her.

We had a wonderful day together and enjoyed our visits with people who cared so much for her (and us) during such a trying time in our lives. There were so many hugs and smiles, it was such a boost to my soul to see how Sarah’s journey has affected so many other lives. We loved sharing perspective and faith with a new friend just beginning this journey. We loved our walk around the business college campus, and I loved watching how excited Sarah was about this new adventure in her life. We loved rocking out to Sarah’s favorite ipod playlist in her dad’s new car, and talking and laughing in our 5 hours of travel that day. I will miss those long-ish day-trips together, but am so grateful for those hours of mostly undivided attention and time these past few years. What a blessing. Love, love, love that girl.

~Julia

Clinic Report

A few weeks ago, we went back to Salt Lake for clinic and another appointment. I don’t know why we keep forgetting to report about our clinic visits right away. Guess life has gotten back to “normal” enough that we forget people still want to know the details of this journey. 😉

20141014_122844aSo, for clinic, we got to go to the brand new Primary’s Eccles Outpatient Building. It just opened at the beginning of October. It’s so beautiful, sparkly new, and clean. Loved the theme that flows freely to the new hospital remodel, and feels comfortable, yet child-friendly. It’s just wonderful! The darling balloon lights in the lobby and cafeteria were my favorite thing!

Sarah’s clinic appointment went well. We got to meet and become acquainted with a few new transplant team members. Sarah’s echo looked good (consistent with others in the past), and her labs all checked out OK. One of her drug levels was a little high, but they decided that the antibiotic she was on (for a sinus infection) was probably the most likely contributor. We’ve had her labs drawn again off the antibiotic, and everything’s just perfect!20141014_155413a

While we were in Salt Lake, we also did the neuro-psychological testing I mentioned that we were planning to have done. She spent the greater part of a day doing testing to check her abilities in areas like academic, reasoning, memory, and concentration. We felt it would be good to know how her brain works, and what skills/helps she might need when she gets to college in January. We discovered, much to her delight, that even though she’s taken a few years off from school, she’s still scoring average to above average in most areas. We were really happy to find out that her processing and memory recall is also normal, when given enough time to pull it out of her brain. When the task is timed, she usually came in below average, but when given time to complete the task, her answers always were average or higher. So, we concluded (and the psychologist will write reports for the college to include this) that she simply needs extra time to complete tasks. Timed tests will need to not be timed, or shortened instead, so she has adequate time to remember and process the information she needs to answer the questions. She will also need to develop some strategies as she goes in order to memorize information, and may need a little extra tutoring when learning new skills. No sweat. It was good for her to be assured that she CAN do college, and that her development and health issues haven’t really impacted her ability to learn and process information. I’m so excited for her to realize what she really can do with her second chance.

So, the question I still get asked most often these days is “How is Sarah doing?” I’m thrilled to report that she is doing incredibly well. She seems to be getting along just great with her angel heart. She is healthy, loving her life, and feels great almost every day. She is taking good care of herself, making plans for her future, taking steps toward independence, and developing stronger relationships with family and friends. We truly couldn’t ask for more…. 🙂

~Julia

Incredibly Nice Things #4: PF Changs

pf-changs-logoA few days before we moved Sarah back home from Salt Lake last summer (July 2013), Grandma and Grandpa took us out for lunch to celebrate. We went to PF Chang’s in downtown Salt Lake City after the lunch rush, to avoid the crowds. This business of protecting Sarah from germs was a little tricky at the time. When the hostess asked to seat us, I requested a table in the corner, all by itself, on the opposite side of the room where the other guests were placed. We must have been quite a sight when the waitress found us. Sarah had on her mask, and I was armed with the hand sanitizer and a large pack of clorox wipes. We quickly decided on the best place for Sarah to be seated, and like a mad woman I wiped down the entire table, her chair, and her menu. And then, I wiped the menu again. (Just a word of advice…never look at the wipes when you’re done sanitizing a menu.) When the waitress came back, I apologized for my over-zealousness with the wipes and explained that Sarah was immuno-compromised, and we had to be careful. She took the dirty wipes off the table to throw them away, and with a sweet smile on her face, excused my antics as if they were a common occurrence. PFChangsLettuceWrapsWe ordered their amazing lettuce wraps as an appetizer, with a separate plate and a spoon so we could take Sarah’s portion off the plate before the rest of us ate from it. Following an amazing lunch, we picked a couple of desserts to share, and again, ordered a separate plate and knife so we could cut some off for Sarah. Our waitress was so sweet and accommodating, I was touched when she instead brought us each a separate plate to share the desserts. In my almost constant state of near-tears, I told her how much I appreciated her service and kindness, and how much this outing had meant to us because we were celebrating Sarah’s recovery from a heart transplant. At just a little prompting from her, I told her the shortest version of Sarah’s story I could muster, and thanked her again for helping us feel normal again and have a great lunch out together. She congratulated Sarah, told us how happy she was for us, and walked away a little teary herself. As we were finishing off our deserts, the waitress came back, grinning ear to ear. She announced that she told her manager about our celebration and that they decided they wanted to help us celebrate. Then as she handed Grandpa the check, which had the total zeroed out, and “Congratulations!” written at the bottom, she said, “It’s on us today. [huge grin] Oh, and also, here are four $10 gift certificates to help us celebrate our 20 year anniversary. Come back soon!” pfchangsWe were all speechless. On our way out, I stopped to thank her, and because I’m weird like that, I had to have a hug. So that day, we got a FREE lunch (with appetizer and desserts), $40 toward our return trip, and a hug from the waitress. It was a marvelous afternoon, and I was grateful for the opportunity to share Sarah’s amazing story, touch another’s heart, and be the recipient of such kindness, yet again. Sometimes I still can’t believe all these incredibly nice things…even though I was there. So, if you live in the Salt Lake area, and you find yourself in need of a place to eat lunch, go to PF Chang’s. It’s one of my new favorite places in Salt Lake. 🙂

~Julia

July Clinic

On July 31st, Sarah had another transplant clinic visit. Everything looked great…echo, labs, etc. (You’ll remember that she doesn’t have to have another biopsy until next April–unless things look sketchy–so we’re still just watching for symptoms to point to any rejection until then.) We’re happy to report that once again it looks like her heart and body are still getting along very nicely. She did get a stomach bug in mid-July that was still hanging on. They ran more labs and a sample to make sure that she didn’t have any of the nasties transplant kids often get (CMV, rotavirus, and a slew of others). They all came back negative. (Yay again!) But, a week later, the diarrhea still hadn’t gone away, so they reduced the dose of her CellCept (one of her anti-rejection drugs), which can sometimes cause diarrhea, and increased her steroids to keep things balanced. They’ve decided she has norovirus (good old-fashioned “stomach-flu”) that can’t heal completely because of her compromised immune system and the drugs she’s on that can irritate the bowel. They told her to keep lots of fluids in, and we have checked drug levels to make sure they are not being affected too much. Now, a couple more weeks later, her bowel is having good days and not so good days, but overall, things are getting better, and her Prograf level is still perfect.

In clinic, we talked about a few things that were put on the back burner when we were listing her for transplant. We sought permission and direction about having her wisdom teeth pulled, since she wants to be completely out for the procedure. They’re deeply impacted and the dentist says they have to come out. She decided she’d rather do it sooner than later, so we’ll be doing that in the next few months–wherever we can find an oral surgeon that has a dedicated anesthesiologist that’s comfortable working with a patient post-heart transplant. Hmmm…that could be tricky. We also talked to Julianna (our social worker) and she suggested that we get an appointment for the neuro-psych testing we had also wanted to do before Sarah’s listing. She had told us that researchers have found some correlation with learning disabilities, developmental delay, and cognitive function issues in kids with congenital heart defects. Sarah seemed to “catch up” OK after each of her surgeries, but as she got sicker and sicker in her late teens, we could see that her reasoning and memory were genuinely affected. Julianna encouraged us to still have this testing done before she starts college, so she can have a better picture of how she learns best and what areas she might need more help in. Then, in turn, we (and the college) can give her the tools and help she needs to be successful after chronic illness, transplant, and complications/issues during recovery. So, it looks like we’ll be doing that in the next few months, too.

She also asked permission to go to Alaska. Dr. Everitt just laughed, looked at me and said, “Mom, can she go?” She’s so excited to go with Grandma Dixon, and they’ve already bought their plane tickets for nine days at the end of September. They talked about going on this trip to see my sister and her family way before transplant (after her high school graduation), but she never got “better enough” to go. Well, now she is not only better enough, she doesn’t have to have special letters to travel, oxygen on the plane, OR take extra care while she’s there.  I’m excited that she’ll have this opportunity to travel without her parents, and try her independence for more than just a few days. I’m super jealous, but so happy for her to have this experience.

July2014ClinicdayThe afternoon was filled with a visit with a couple of darling little boys who have been on the transplant list for more than 100 days and their incredible mommies. Sarah was sad that she couldn’t get close and we couldn’t go in and play (because we didn’t know if she was contagious or not), but it was a life-changing experience for me, being on the other end, and trying to offer hope and love to those walking a similar path. (I’m hoping to share their stories in more detail later, but I need to get permission first.) After the visits on the 3rd floor with them and a favorite nurse, we went to Zuppas Café for lunch. We had delicious bowls of soup, and Sarah had her first crème brûlée. (Kind of a deprived, isn’t she?) After lunch, a nice, young man named Zack took us on a tour of the LDS Business College and introduced her to some of the interior design students. Sarah was enraptured, and that led to her decision only days later to attend in January.

The next day, she had an MRI on her liver. We got a letter a week or so ago that said that her liver is cancer-free, and things look good. Always a relief to get those kind of letters.

So, things are going well for Miss Sarah. Her tummy is getting better, her liver is healthy, her heart is doing an incredible job, she’s studying for her written test to get her driver’s permit, going back to work (full-time) as soon as her tummy finally allows her that freedom, finishing her application to LDS Business College, and preparing for a trip to Alaska. Oh, and she has a couple of weird procedures/tests we need to have done in the next few months. Whew! She seems to be handling the whirlwind of change a little better than I expected. I think I’ll just hang onto her hand and try to enjoy the ride until it’s over. Oh, wait… this IS just the beginning, isn’t it? …Yeah, a great new beginning….

~Julia

Incredibly Nice Things #3: Fundraiser

DSC_0140I really should have written this post a long, long time ago. I was so overwhelmed with the feelings of love and gratitude, I didn’t know what to write. Then waiting for pictures from a friend became my excuse… and then, well…life happened, and the fundraiser ended up on my list of “incredibly nice things people did”. The community fundraiser was such a huge help during our journey that we created a special page for it. (Plus, there were way too many special pictures to put into one post!) You can click the “Fundraiser” tab at the top of the page, or this Fundraiser link will take you there. If you know of any amazing stories that happened behind the scenes, we would love for you to comment and share them. Miracles happen every day. Please take a few minutes to look through the pictures. See if you can feel the love in that room…like we did!

~Julia

P.S. There were so many people that were involved in this amazing event. I didn’t name any names, for fear of leaving a couple (hundred) out. You know who you are, and from the bottom of our hearts…we love and appreciate you.

Incredibly Nice Things #2: Deseret Book

swindle-ofoneheartjosephThe second incredibly nice thing someone did that I wanted to write about was Sarah’s Deseret Book Gift. When I came home after Memorial Day (2013, when she was suffering so much with the ICU Psychosis, infection, and psychotic reaction to Levaquin), I went into Deseret Book at the mall. I wanted to get her a copy of her all-time-favorite painting by Liz Lemon Swindle, “Of One Heart: Joseph In Liberty Jail”. It has come to mean so much to her and given her much strength in the past, and I thought it might be a good birthday gift to help give her perspective through her recovery. (You can read about what this painting means to her in her own words, posted September 2012.) As I was sorting through all the prints, a nice smiling lady with a name tag that read “Debbie” came back and asked if she could help me. I told her about Sarah, her recent heart transplant and the hard time she was having lately, and that I was looking for that specific print to get her for her birthday. We couldn’t find one in stock, so she set me up on the website at the computer at the counter to search while she helped some other customers. We found just one, a 5×7 print, that could be ordered, but probably not in time for her birthday.

Throughout our conversation, Deb told me that her daughter had also spent a lot of time at Primary Children’s over the years including several brain surgeries. This daughter has since become a nurse and works at our favorite hospital. She told me she would like to buy the print for Sarah, and give it to her as a gift from a stranger that had walked a similar road. I, of course, objected, and told her she that was kind, but that it was not necessary. Deb looked at me in the eyes–actually straight through me–and told me that when her daughter spent so much time in the hospital, the love she felt from people around them (especially the strangers) brought so much strength. She had promised herself that anytime she could, she would do kind things for people who were walking that road and needed a little love. Of course, the tears flowed freely and that stranger, my newest friend, hugged me long and tight–right in the middle of the store. I thanked her and gave her my phone number so I could come pick it up when it came in.

20140707_122824About a week later, I got a call from Deb that they had worked some magic, the print was in, and she (and her manager, Chris) were having it framed and putting together a whole gift bag for Sarah for her birthday. She wanted to make sure it would be ready in time. I couldn’t believe what I was hearing. It was overwhelming that the love of strangers could fill up empty spots in my heart I didn’t even realize were there. It was an incredible surprise and gift, and I was excited for Steve to pick it up the next day and bring it to Salt Lake with him just in time for her birthday celebration.

When she opened the gift bag, she discovered not only the painting she loved so much, but a wooden bust (also of the Prophet Joseph Smith), a novel, a couple of smaller inspirational “talk” books, a journal, and some other treats and little things. (Since it’s been so long, we honestly can’t remember exactly what else was in there… probably a Utah truffle bar or some other treat, lip balm, maybe a pen….) It was so generous, so kind, and so thoughtful. I told Sarah the story about what had happened, and that the gift was from Deb and Chris at Deseret Book, and she was just about as amazed as I had been. It was another simple gesture that was such a huge strength for the Brown family.

I saw Debbie at Deseret Book again just before Easter, almost a year later. I reminded her about Sarah and thanked her again for gift that they had sent. I gave her the happy report about Sarah’s one year anniversary coming up in just a few days, and how well she was doing with her new heart. She hugged me hard again, and told me how very grateful she was to hear such wonderful news. This time both of our eyes were welling up with tears as she stood at the register and took care of my purchase. There are such wonderful people in this world, with good hearts so full of love. We feel very blessed to have “run into” some of them along the way throughout this incredible journey.

~Julia

Incredibly Nice Things

I’ve been keeping a little scrap piece of paper that says “Incredibly Nice Things People Did” so I wouldn’t forget to someday blog about the kind surprises we’ve had through this journey. I shared these four events with family members as they happened, but then somehow between the clinic reports they got lost and I never shared them with the world. They were little things in some people’s eyes, but huge for us, and I wanted to publicly thank and recognize the kind-hearted people who shared their love, and didn’t even know Sarah or our family.

Incredibly Nice Things People Did #1: A Good Luck Necklace

In the middle of January, a year and a half ago, Sarah was awaiting word of her listing for a heart transplant. An article hit the front page of the local newspaper that told her story, and a couple of days later, she was finally listed. Sometime that week, she received in the mail a very kind, anonymous letter and a beautiful handmade necklace that deeply touched our hearts. I hope the designer of this necklace doesn’t mind me sharing parts of her letter. She (I’m taking liberty here to assume that this gift was created and sent by a female….) said that the article in the paper quickly grabbed her attention and through tears and smiles, she realized how much Sarah has already been through and how strong she is. The author shared shared her own story about a surgery that completely changed her life. She was sustained by prayers of family and friends, and knew she was completely in God’s hands. She is grateful that God saved her life and allowed that experience to change who she was. The support she received had a huge impact on her life, knowing that complete strangers were praying for her. She added that she knew Sarah’s journey wouldn’t be an easy one, and that she would be continually praying for her during her waiting and recovery.

Then she explains her enclosed gift…

DSC_0068I designed a little necklace for you because simple words and symbolism tend to have a bigger impact than we realize…. I admire birds and their symbolic meaning of freedom. However, God has shown me that birds have a dynamic meaning to them. “Do not worry. Look at the birds, free and unfettered, not tied down to a job description, careless in the care of God. And you count far more to him than birds.” (Matthew 6:26 – The Message Version) A lion of course symbolizes many things including fierce, strength, courage, and brave. All of which you are, always remember that! Hope is more precious than anything in this world, so many people need it and yet so few hold on to it. Don’t ever give up on your hope Sarah. The lock and key–God is opening new doors for you, a new journey to embark on that will draw you closer to him. And after reading your blog…I simply included your favorites; pink and green. 🙂

I hope the love and gratitude with which the gift and that letter was received was somehow felt by this sweet individual. I hope she was able to feel it returned to her many times over as  she carefully and thoughtfully wrote that letter and created the beautiful necklace, and then waited quietly while Sarah received it. Being anonymous, there was no way we could even begin to thank her for such a special gift, and for the many many prayers she (and I’m sure her friends also) offered to God in Sarah’s behalf over the following months. But the story of that necklace doesn’t end there….

Sarah wore the necklace the first time just days after receiving it. And later that night, she got her first call and offer for a new heart. (You may remember, it turned out that we could not accept the heart, and then began her pre-transplant treatments to get her in the best shape possible for when the right heart did come.) She didn’t wear the necklace much after that, but it hung in her room to remind her that a stranger loved her and was praying for her. After moving into the hospital and up on the waiting list, I asked her one day why she never wore it anymore. She said she honestly was scared to, because she wasn’t sure she was ready yet for her new heart. We’re really not superstitious people, but she felt that it somehow could bring her her new heart, and wearing it would demonstrate that she was ready. She didn’t feel ready. Weeks passed, and once when I went home to gather a few more things for her, I saw the necklace hanging in her room. I packed it to hang it in her hospital room to keep reminding her of Heavenly Father’s love, her courage, opportunities ahead, and the love and prayers of so many strangers, friends, and loved ones. Only days after my return with the necklace, she received news that a perfect angel heart was ready for her. We all know it wasn’t really the necklace’s doing, but that it was all in God’s hands how and when things happened in Sarah’s journey. Still, it was pretty remarkable how symbolic that necklace really was in her life, throughout this journey, and what it has come to mean to her. We have lovingly nicknamed this necklace her “Good Luck” necklace, and she still wears it with gratitude, courage and honor. Thank you to someone who offered a part of their heart to a sweet stranger. It truly strengthened Sarah, and her parents.

~Julia

Doing the Happy Dance

00a50f663379dc7cc7da3bd269be8e9bSarah had another biopsy today, the first one since med changes following her antibody-induced rejection showed up. She did really great, everything looked great at clinic, and we’ve been doing the happy dance all afternoon! Her biopsy results came back….SQUEAKY CLEAN!! No more rejection – of either kind! For the moment, there will be no changes to her treatment, and we don’t have to go back to transplant clinic for two months!! How’s that for enjoying this summer?! Feel free to join us in our happy dance….

A couple of weeks ago, we also went to the adult liver clinic at the University Hospital. She met with the nurse practitioner we worked with when they were evaluating for liver transplant almost two years ago. (Wow…can’t belive it’s been that long….) Anyway, she’s really nice, and we like her a lot. She asked what Sarah had been up to since she saw her last and she drawled, “Well…, I got a new heart…” Karen was so excited for her, and so happy to see how great she looked. It was kind of a fun reunion. She looked over her labs and history post-heart-transplant for a while, and then examined her. She said sometimes a major surgery like she had will cause problems with the liver, and with hers already sick, she expected to see some evidence of the trauma. However, there really weren’t any problems during her recovery with her liver, and no signs of stress on the liver, either. She told us that was a sign of a pretty resilient organ, to be able to bounce back after such a major surgery so well. It is her opinion that with her new heart, not only has the damage to her liver stopped, it is very likely that her liver will actually begin to heal. She said it might take a long time to see a change, but she gave us a lot of hope that things will actually look better in the years to come.

This is just so completely amazing. I’m so very grateful for the incredible people who are taking such good care of Sarah. I’m glad I just trusted them and didn’t worry about the rejection this time, like I did before. There was a lot more peace in my life, and my heart, just letting go and turning it over to Heavenly Father and the very capable angels in lab coats that take care of her. I really just don’t know how to contain my relief and happiness with another squeaky clean biopsy. How grateful I am that this rejection roller coaster has only been a six-month ride. A few of our transplant friends have fought it over and over, for such a long time…  I think I’ll just keep doing my happy dance, and spend some extra time on my knees tonight thanking Heavenly Father for blessing Sarah’s angel heart…and her life…yet again. Just another bump and a miracle… God is good!

~ Julia

Heart to Heart

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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’ billionclicks.org “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.

~Julia