Only 5 months ago yesterday, Sarah was wheeled down the hall with her mommy’s arms around her and taken to the operating room where she would receive a new heart and begin her second chance at life. It’s so amazing, humbling, and miraculous to be a witness of the many miracles and blessings that have happened in her life since that incredibly unselfish gift was given in the midst of what we can only imagine was excruciating pain and loss. So, we celebrate her 5th month with that new, healthy heart with as much gratitude as we can muster in ours. We hope her donor family has found some peace, and that at least a little of that comes from knowing that their loss has prevented ours.

Sarah had a biopsy on her heart last Thursday. It came back PERFECT once again! She was a little nervous since she’d been sniffly, and there were different doctors doing the procedure, but she went in under conscious sedation again, and came out like a champ. All her pressures were the same or better, and there was absolutely no sign of rejection in the tissue sample. At her clinic visit, we learned that her Prograf level is a little low again, so we bumped the evening dose up to match the morning one. Because everything looked good in her biopsy and her echo, the doctor also cut her Prednesone (steroid) in half again. We’re hoping that she’ll respond well and in another few weeks we can discontinue that one (and at least one of the preventative ones) altogether! The cardiologist didn’t see any reason for us to come in again next week, so we’ve got a 3 week break (with the exception of a blood draw in Tremonton) from any appointments in Utah! Hooray! At her clinic visit the week before biopsy, the other change that was made is the beginning of transition to the adult transplant clinic. We knew this would happen eventually, but we just don’t want to grow up! 🙂 Sometime after 6 months, she’ll likely be transferred to Intermountain Medical Center (still within the IHC family) and be followed by the transplant team there. Our coordinator, Emily, went there just this month, so although we’re not excited for the change, we will be very happy to see and work with her again.

Life is good. …Better than good…. I still can’t believe it’s been five months. And I still can’t believe how perfectly matched her new angel heart was. Looking back now, I just feel so much gratitude. We are grateful to a loving Savior that walked the path with us through this journey and offered up His grace to give us strength sufficient to endure it triumphantly. We are grateful to our loving Heavenly Father for the innumerable tender mercies and blessings that were poured upon us daily. We are grateful for the many prayers and thoughts that were offered up to Heaven which helped strengthen and sustain us in our hardest times. We are grateful for the incredible purpose Sarah must have on this earth, and that we have the unexpected pleasure of watching it unfold. Lastly, we are grateful for the family who decided to save lives when they had to say goodbye to someone they love. For these things (and many more), we will be forever grateful.

~Julia

I keep thinking of John Mellencamp’s song, “Small Town” as we’ve worked through a couple of hiccups with getting Sarah some of the things she needs. We live in a city with a population of 54, 277 people. It’s the 5th largest city in the state and covers 28.2 square miles. I learned tonight that Pocatello was ranked twentieth on Forbes list of Best Small Places for Business and Careers. (Huh…who knew?) We have Idaho State University, a brand new state-of-the-art hospital, three high schools, and even a Costco. You’d think it would be a big enough town to have access to her life-sustaining medicine and lab processing in a town like this. Well, apparently not. When I was in high school, my friends and I would talk about getting out of this town…there’s nothing to do here…can’t wait to move away……blah, blah, blah. Well, here we are, raising our family in this wonderful little town where Steve and I both grew up (and if God allows it) where we’ll probably live forever. It’s a really nice community, a peaceful place, and has everything we need…almost.

Problem #1 became apparent shortly after we moved back home, when we had to get Sarah’s mycophenolate (cellcept) and tacrolimus (prograf) refilled. (They’re her two anti-rejection meds, and since she started on a specific brand, it’s best that she stay on it so we don’t screw up her levels with a different generic that may be a little different.) Our home-town locally owned pharmacy we always use (because we love them) couldn’t get them in the specific generic brand she needed. We talked about doing mail-order, or having Primary’s pharmacy send it to us, but with refill time and mailing time, it could get a little tricky getting it always in time. So, after calling almost every pharmacy in town, I found one that could get it but doesn’t accept medicaid, another one that could get some in for us but wouldn’t guarantee that they always could, and finally…talked to a very nice pharmacist at Ridley’s that happens to be in our ward that said, “sure, no problem” and then got us exactly what she needs. So, as inconvenient as it might seem to drive across town to pick up her medicine, it isn’t really that big of a deal. In our city, that drive only takes about 15 minutes, anytime of the day. I guess living in a small town does have its advantages. Problem #1 solved.

Problem #2 became apparent when Sarah needed her drug levels checked after we discontinued her fluconazole and raised the prograf four weeks ago. We went in on a Saturday morning to our local hospital outpatient lab to have her blood drawn. It took until the following Wednesday evening for the transplant team at Primary’s to get the results. (Apparently, they send all their samples to a lab in California and the courier doesn’t take them on the weekends…so, we wait for 5 days to know anything….huh…really?) Sometimes that’s ok, but when we’re waiting to see if she’s at a good level or not, 3 days without enough medicine could cause some problems. So, we talked about it and decided that since the team was so nice to let us go home (if we were still in Salt Lake, this wouldn’t be an issue at all…), we agreed to take her to any IHC hospital we could so the samples would go to the IHC central lab and results would be available on the system for the team to see the same day, as soon as they’re processed. The closest IHC facility to us happens to be in the even smaller town of Tremonton, Utah. But it’s only an hour and a half away, instead of two and a half. So, Steve took her there three times last week to have those levels checked for same-day results. The lab techs have been very nice, and with lots of communication from the transplant team, they have accommodated our unique situation quite well. So, not ideal, but Problem #2 has been solved too.

We have actually talked a few times during Sarah’s life about moving our family to Utah to be closer to her doctors and hospital. It may have made things a little more convenient sometimes (OK…a lot more convenient this past year), but her doctors always assured us we lived close enough and should be able to work it out. We are grateful that that’s always been the case, and we’ve been blessed to enjoy our small-town Idaho home with the love and support we gather from our great community and still have the best care we can get for our daughter only 170 miles or two-and-a-half hours away. When they’re supposed to, things always work out. I love what President Gordon B. Hinckley, a beloved prophet and leader of our church used to often say, “Keep trying. Be believing. Be happy. Don’t get discouraged. Things will work out.”

~Julia

Sarah’s latest clinic visit was last Thursday, the 29th. We totally failed to post a report the last time (on the 15th). Steve took Sarah that day, and after a week of non-report I volunteered to post a little something, and then followed that up with a non-report. So, here you get a two-appointments-in-a-row report instead. (Let me just say here as a disclaimer of sorts that from this point forward, if you don’t hear a report for a while, just assume things are going along beautifully and our sweet daughter is loving her new life, and she and her new heart are getting along fine. That way you won’t have to wonder. Life is good.)

Sarah’s still doing great! Her transplant team (coordinators, nurses, doctor) are almost “giddy” with joy when we go see them. There’s cheering, laughing, and smiles all around. I told them last week that after our great experiences each time we come see them that if we ever get bad news at clinic, I’m not real sure how I’m going to be able to handle it. So we put in a request to keep to the theme and not go there at all. 😉 Two weeks ago, they discontinued Sarah’s fluconazole (medicine that prevents fungal infections) and had to double her prograf (one of her anti-rejection meds) dose because of the interaction of the two. After waiting almost a week for prograf levels from our hospital’s lab (that’s a story for another day), they realized that they’d need to double them again. After a couple of drug level blood checks, things are at an optimal level and all is well in the med department. Two weeks ago, they also decreased her prednesone (immuno-suppressing steroid). She’s lost a little more of the puff in her cheeks and feels great being at that level. She has also been able to stop taking any insulin, and the endocrinologist cancelled our appointment this month. So, transplant team told her she didn’t need to check her blood anymore. She was super happy about that. She’ll still check here and there as she feels she needs to, but looks like her body’s all done with high blood sugars and we can cross diabetes off her list of possible complications. Echo looked great, white blood count was still low, but coming back up, other electrolytes looked good… all reports were good yet again!

We got to see Zack and Julie there at clinic too, and then they joined us in Sophie’s Place for some music therapy. (Zack’s last biopsy showed a little rejection, so they’re working on re-regulating his meds. Otherwise, he seems to be doing pretty well…busy as a happy and healthy two year-old should be.) It was fun to see them again. We’ve been missing their little family. We made a quick stop to the CICU to see our favorite nurses, and got to see one of Sarah’s housekeeper friends and a doctor in the ICU that cared for her a lot. BONUS! It was fun to show off our healthy girl, and such a treat for them to see how far she’s come since her CICU days! After that, we got to go up and visit a special little almost two year-old girl waiting right now for a new heart. We delivered a bunch of cute little decorations Sarah made for her room, and offered a little love and support. I honestly walked out of that room strengthened by her mommy and her beautiful perspective. I told her she was “amazing”. Still trying to figure out why I said that…. She responded much the same way I do. I laugh and roll my eyes when people tell me that. I know to them I may appear amazing, but in that situation, there’s really nothing that feels amazing about it. You just do what you have to do, if you want to do so much more than just survive. Thriving and loving and finding joy along the way is the only way, and this mommy (and her sweet family) have found lots of ways to do that. I was so happy to finally meet her face to face, and her cute little angel made us laugh and smile, and totally made our day. After our visit, we stopped at Baskin Robbins for ice cream (yes, we did have ice cream for lunch). Sarah also had a great visit with her psychologist and set some goals to help her deal with being “abandoned” every day by her family while we’re at school and work. She’s still healing, working on getting stronger, figuring out what she wants her future to be (since she has one now), and making necessary adjustments to find her own rhythm. I’m grateful she has a safe (non-family) connection that can help her work through these things. The most exciting thing about those goals, though, is they were a result of realizations and thoughts she had pieced together on her own. Her personal growth has been so amazing to watch. After all the visits and appointments, we had a small supper and visit with Aunt Vesta. She’s my angel of a great-aunt that Steve and I stayed with while Sarah was in the hospital.

Since our wonderful visit to Salt Lake, Steve has taken her to Tremonton for blood work twice (7:30 a.m. blood draw) for same-day results to check her prograf levels. Both came back A-OK. 4-times the prograf seems to be a good dose right now. Life’s been good, except Sarah has caught a bit of a sick bug this week that one of us brought home from school. (A week and a half in school, and two brothers already had head colds. Sheesh!) We were so careful, but I guess the bugs have a way of finding the weakest immune system anyway. Now that we know what she can take (which isn’t much) to help her feel a little better, we’ll just keep a close eye on her vitals, and let the team know if anything changes. Prayers will most assuredly help, too. I’m confident this is just a small bump in her new life she’ll need to get used to. Might as well face it now. If she recovers without complication, I imagine this experience will empower her to see that she really can LIVE her life, and survive the irritating germs along the way, too.

~Julia