3rd Annual Exam

We went to Salt Lake last week for Sarah’s annual post-transplant exam. It included two days of tests with a right and left heart catheterization, heart biopsy, EKG, x-ray, labs, echo and clinic visit. We went with worries clouding our thoughts, but tried to hold onto positivity as we entered the hospital. Besides the normal nervousness, we found out last week that two children we know who received hearts the same year Sarah did both have coronary artery disease, heart failure, and are listed for re-transplantation. Kelsen is separated from his brand new baby sister (and recovering mommy) as he lives in the hospital now until another new heart is available. Owen is living (with his mommy) in the CVICU in critical condition, far from stable, and has been moved to status 1A while he continues to fight. This news made us so sad, and a little worried about Sarah’s heart, considering the severe rejection and heart failure she experienced last fall.

We’re happy, grateful, and somewhat humbled to report that Sarah’s heart is still happy. Her rejection is as good as gone. The doctors at UofU said her biopsy was “negative” so we’ll take that as a “healthy, all clear, clean, and happy.” (For the “it-doesn’t-mean-anything-to-me-without-the-number” people like me, her biopsy results were: C1 V2 ISHLT0R pAmr1.) I know that doesn’t look like nothing, but you’ll remember that 1 (and 0) means none and 2 is very mild (and they usually don’t do anything to treat it). So, although it may not really look clean, a “negative” biopsy is what’s in the files! And, we believe the doctors with the files. 😉

Cath0516Her coronary arteries are clean, clear and beautiful. Her pressures were were described as great. I’m still in awe when I watch the monitor during her echoes and see a beautiful four-chambered heart working perfectly. They didn’t have final reports on many of the other tests at clinic, but everything else looked good! They are starting to decrease her prednesone (steroid) again, just a little at a time. We’ll go again in July for another biopsy to make sure the lower dose (down 5mg by then) isn’t causing more rejection. They want to bring her down at least another 5mg, but she hasn’t had the best luck with that in the past, so we’ll take it slow and check things out along the way. She still needs to go in for a check on her liver, a cancer screening with a dermatologist, and an annual “girl exam” in the coming months to make sure everything else is healthy too. With a compromised immune system, it’s super important to have these other things checked annually to make sure there are no problems elsewhere. Not the most exciting plans this summer, but we’ll just have to make my June and July trips to Salt Lake into super fun girl-time shopping trips with a little splash of doctor slipped in.

This past week I’ve been thinking…. This world of medically-fragile children we entered 23 years ago is a vortex of emotion. It’s filled with tears of sadness and joy, prayers of comfort and gratitude, moments of hope and despair. And often, like last Tuesday, there’s a tinge of guilt that clouds the happy news of stable and good health. Just as we absorbed the great news that Sarah’s heart is, in fact healthy again, I saw a Facebook post of about our little friend Owen that his mommy was waiting outside the OR to see if the doctors were able to save him following cardiac arrest. My heart hurt, and as I said a quiet prayer for her, I also added my gratitude that my daughter is healthy. …And then there was the guilt…. (It reminded me of the feeling I felt years ago in the NICU when our baby got to go home and so many others didn’t.) I can’t figure out why it so hard for me to keep those things separated in my mind and heart…. My happiness and gratitude have no connection to her pain and despair. Yet, my happiness somehow felt inappropriate in my heart, even though I know in my brain that it isn’t. It’s a compassion conflict that I’ll have to keep working on. Probably always. As long as there are abundant blessings in my life and people around me struggling…..

sharp34-everything-will-be-okay-in-the-end.-if-it-sharp39-s-not-okay-it-sharp39-s-not-the-end.-sharp34-plus-an-interview-with-amie-valpone-of-the-healthy-apple-about-living-positively-with-lyme-disease.I am so very grateful for Sarah’s good health, her beautiful future, and her gift of life. I pray for it to continue, and that her journey will continue to have countless happy reports. I also pray for Owen and Kelsen and their families, that they’ll have the strength and hope to endure their individual difficult journeys. We have learned that the collective power of faith and prayer is powerful. Please join me. Pray for acceptance, for comfort, for hope, for love, for health…for whatever God has in store for them…. This is one of the many inspirational quotes I have hanging on my bedroom wall.  I love it. Whatever the struggle is, just keep hanging on until it’s okay.

~Julia

Pay It Forward

SeanMcGrath2Sarah was given an extraordinary gift three years ago… a second chance to live life. The miracle of a perfect angel heart given among grief and loss of a loved one on April 21, 2013 changed our daughter’s life forever. We hope to honor the life of her anonymous donor by encouraging all who can to “pay it forward” with a random act of kindness in Sarah’s name. We hope this sharing of love will have far-reaching effects.

photo credit: Sean McGrath

Perseverance and Matters of the Heart

20160127_145533_resizedAn opportunity to share our story came about again last November. Alaina, the editor of a monthly local magazine called Portneuf Valley Connector, attended church with us and kept track of our family during Sarah’s transplant. She contacted me and asked if I would be willing to write an article about perseverance for her January issue that would highlight a handful of suggested character traits to further develop in the new year. I have always enjoyed writing, and was happy to help her out. I was also excited about the opportunity to share our story and have something published that I wrote myself. When I finished my article, it was 3 times longer than the 500-word target she had given me. I edited it yet again and cut roughly 500 words out, but it lost so much of the emotion in our story that it just didn’t feel right anymore. Plus, it was still at least 400 words longer than would fit in the space she had saved for me. I submitted both versions and left it up to the editor. Alaina decided that my article needed to be published in its entirety and asked to run it as a feature article in February instead. I was really very humbled, but also very excited!! Being heart month, it was especially timely, and so cool to see in my mailbox when it finally came! (It was a little startling and unnerving to me that I ended up being the “Cover Girl”. I thought my picture was going to be a little square one at the bottom, like January’s had been. Uh, nope.) Since it’s a local magazine that only part of the Portneuf Valley gets to read, I asked for a digital version that I could share. So, here it is. My first published article. Three weeks later, it’s still a little surreal. But I think when I grow up, I’d very much like to be a writer. 🙂

~Julia

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The Things I’ve Realized

DonorDayFebruary is The National Heart Association’s Heart Month. February 7th-14th was Congenital Heart Defect Awareness Week. February 14th (besides being Valentine’s Day) was National Donor Day. I decided this year not to write Facebook or blog posts listing all the horrible things that come with heart disease, heart failure, or congenital heart defects. The numbers are disheartening and the statistics aren’t pretty. Anyone who’s read this blog the last three years knows and understands to some degree what those are. (If you are new here, and want to know more, please visit any or all of my posts of Februaries past. 2013 / 2014 / 2015  There’s a lot of heart-string tugging in the reading.) So although I didn’t spend any time writing about it last week, I did do a lot of thinking. I wanted to share instead just a couple of the incredible blessings from our journey that I’ve come to realize this week.

  • Practical knowledge – Before our heart baby, I didn’t know how a heart even functioned, let alone its intricate anatomy and how miraculously it works. I didn’t know how to help a skinny kid on a fat-free diet gain weight. I had to figure out how to avoid tripping over 100+ feet of oxygen tubing stuck to my toddler’s face and threaded through my house. I didn’t know the difference between a peripheral IV, a central line, and a PICC Line, or what TPN, Lipids, IVIG, or Thymoglobulin was. I didn’t know that heart failure causes collateral damage to other organs, or that intestinal disease and liver damage could heal with a healthy heart. I learned how to measure medicine and give shots, track vital signs, and watch for adema and cyanosis. I didn’t know that my daughter could be so strong and brave. (And I didn’t know I could be, either.) I didn’t know how incredible the love of family and friends could feel. I didn’t know very well how to reach out and serve people that are struggling until I learned what others did that helped me. I didn’t know that someone would be willing to make a very difficult choice in the midst of a tragedy that would completely change my daughter’s life and give her a second chance. I didn’t know how close my Savior was, or how completely His love and grace could comfort and heal me and the people I love. There were a lot of things I didn’t know before this journey started. I didn’t know that I needed to know them. I’m so grateful I do now.
  • IMG_5831My family – They are everything to me and I love each of them with all of my heart. (How is that possible?) In the beginning, it was just the three of us. Mommy, Daddy, and Sarah. We clung to each other through the first couple of years with her diagnosis, unsure future and first four surgeries. When it was time for her next one, we were a family of four. Rachel was almost two, and loved spending time with grandmas and grandpas, aunts and uncles, and anyone who adored her. When Sarah was sick as a teenager and throughout her later stages of heart failure and transplant, we were a family of seven. It had been so long since we had to do the hospital scene, we weren’t very sure how to do it without the three of us clinging to each other in the sterile rooms of the ICU like we did in the beginning. We learned the hard way that we had to keep some sense of “normal” at home. The four children left there to worry and wonder had to have someone to cling to as well. Grandma and Grandpa were blessing for sure, but just not the same as Mom or Dad. Our “period of separation” was probably the most difficult part of the whole journey for our family, but it was so very necessary. We learned what was most important to occupy our time, and our family always rang in at #1. The house was dirtier than it used to be, we ate cold cereal for dinner a lot more, and we told a lot of people “no” when asked to help with things. I think we even skipped school a few times. Above all, we most definitely cuddled more, went out for treats more often, and made sure the words we spoke were soft and kind. We always looked for blessings and miracles–things to be thankful for, especially when things seemed hardest. We worked together, played together, and fasted and prayed together. We learned to talk through our frustrations and fears and rely on the other members of our family to help us be strong. We believe that families can be together forever, and we’re grateful that we have learned how to love unconditionally and completely. Forever would be a really long time if we didn’t love each other so much!

So, this Heart Month, instead of feeling sad for people like us who have been touched by congenital heart defects, heart disease, organ failure, or other life-altering struggles, take a few minutes to think about the things you’ve gained through your own struggles. Maybe you have also learned things that you didn’t used to know. Like us, maybe you’ve learned to look for tiny blessings to be thankful for, or how important it is to love your family a little better and squeeze them a little tighter. Most of the heart families I know wouldn’t want you to feel bad for them. Most of them are actually grateful for their struggles because of how much they’ve gained, and what they’ve become through their experiences of struggle or loss. But just in case they need it tonight, please think of them. A prayer wouldn’t hurt, either.

~Julia

Rejection and a Tough Cookie

October 29, 2015   Sarah’s having her first UofU heart biopsy and cath this morning. She was a little nervous, but so far the experience has been much warmer, kinder, and better than we had anticipated. Praying for good results. But if not, then the ability to accept them with faith and courage.

That’s what I sent out to our extended family the morning of her biopsy. Sarah suspected things weren’t quite right, but we had no idea things were…so bad. Here was the follow-up post later that day.

Sarah’s numbers from the cath indicate rejection. We don’t know what kind (cellular or antibody induced) yet, but they want to get treatment started right away. Checked into the University Med Ctr for a few days for high doses of steroids. We’ll get biopsy results later today and make a more complete plan. We’re disappointed, but very pleased with her doctors. Dr.Omar said in broken English, “Do not cry….. We will get you better.”

The following day, after we had a little better idea of what was going on, I updated our “Primary Children’s Heart Transplant Family” on Facebook with this post:Nov 1 2015

October 30, 2015   So, we came to the U for biopsy and clinic yesterday and ended up here. For a few days. Severe cellular rejection is the villain, Dr. Omar is our new hero. Still waiting for DSA and antibody mediated rejection results. Sporting a new PICC line, a lovely super-sized gown, and growing roid cheeks. Also, lost 4 pounds of fluid overnight. Sarah’s smile is back!

And this one to explain a little better for our family:
Doctor said Sarah is responding well to the medicines. Another dose of thymoglobulin (the stuff that grabs and destroys antibodies) and IV steroids today, and another one tomorrow. Planning to keep up med changes (higher doses) through the weekend and do another echo next week to recheck progress. If everything looks good, they’ll discharge her. She’ll be in for another biopsy in two weeks to check rejection again. For now, she’s feeling good, happy, and doing well at the big kid hospital.

This is the post we made for the “world” on our personal Facebook pages. It was immediately flooded with comments of support, love, and prayers on her (and our) behalf. I’m constantly amazed at the brigade of soldiers we have standing ready to offer faith, service and love.

November 1, 2015   Thursday’s heart transplant clinic didn’t go as well as we had hoped. Sarah’s biopsy and exam showed severe cellular rejection. They checked her into the hospital and immediately began treatment. She has responded well and our experiences at the big kid hospital have been good. We’ll check tomorrow and see how things look and do a biopsy again in two weeks. Her awesome doctor expects a full recovery. Counting our blessings, trusting God, and holding each other tighter.

Two days later, this was our follow-up post for our Facebook friends:

November 3, 2015   Today I’m grateful for the miracles of modern medicine. Five days ago, Sarah was checked into the hospital with labels like “severe rejection” and “acute heart failure” and today we’re taking her home. Without any IVs, oxygen, or medical equipment. Her heart is getting better and her body is no longer reacting so negatively to whatever set it off. So in a while, we take our sweetheart back home for a do-over with a truckload of medicines and hearts full of hope and gratitude.

Nov 1 2015BAnd our family’s message that same wonderful day:

Sarah’s going home! She’s got a bit to go before she’s all better, but definitely on the right track now. Going home today with a truckload of meds, but no oxygen, insulin or IVs. We’ll keep track of her at home in Idaho for a little while as she recovers and gets her strength back. She has another biopsy and re-check on the 12th. Thank you again for your love, faith and prayers. As Steve’s dad once said about Sarah’s journey, “Every day there’s a bump and a miracle.” Love you.

So we took her home and loved her. We helped get her back on the right track and get lots of rest while her heart continued to heal. She was back on most of her post-transplant meds from two and a half years ago, and her immune system was totally shot again. It really was kind of like starting over. A do-over. Only this time at home.
Here is the follow-up message we sent out and posted to let everyone know how she was doing following her next biopsy.
November 15, 2015   Just wanted to give a report of Sarah’s heart’s happiness level. She had another biopsy last Thursday. They found that the treatment was successful in helping to heal her rejection. It has changed from severe to moderate, an improvement we are very grateful for. They have decided to keep her on the increased doses of meds for the next month to continue this trend. They plan to do another biopsy in December, about a month from now. The doctor gave her permission to go back to school, where we hope she will be able to make up enough assignments to finish out the next 4 weeks of her semester successfully. We pray for this, as well as her good health in a more immunosuporessed lifestyle, continued healing of her heart, and of course, the intense gratitude we have for her new heart and second chance at life. ♡ Thank you so much for your love and prayers.
Since then, her rejection has slowly and steadily improved with each biopsy. In case you forgot what the numbers mean, C=cellular or needs medicine level changes and V=vascular, usually has something to do with antibodies, and is much harder to treat. Apparently, those two letter/number combos are unique to the Utah medical system. The scale goes from 1 to 5 (1 = 0, meaning none… no clue why). The ISHLT(-)R and pAMR(-) are numbers used internationally that show the overall rejection level.
  • October 29 Biopsy results: C5 V2 ISHLT3R pAMR2
  • November 12 Biopsy Results: C3 V3 ISHLT3R pAMR2
  • December 28 Biopsy Results: C2 V3 ISHLT0R pAMR2
  • January 26 Biopsy Results: C2 V2 ISHLT0R pAMR0
tough cookieWhen looking at the October biopsy results, it’s no wonder they were using scary words like “severe cellular rejection” and “acute heart failure”. She was a very sick girl again. But, as you can see, the numbers keep going down–and each time they do, she’s closer to a clean biopsy, and a healthy happy heart. I’ve been looking back at some of her posts where there was rejection we were treating (November 2013 / January 2014 / June 2015) and realized that she’s at a point in her recovery that we can breathe much easier now. Perspective is everything. I was a little concerned yesterday when she told me that the transplant team decided to reduce her steroids and some of her anti-rejection meds (which means also take her off her other prophylactic meds she will no longer need on the lower doses). They also decided to wait two months this time for another biopsy. I wanted to see zeroes all the way across before they loosened the reigns. But now I realize it’s time to trust and allow the angels in white lab coats to work their magic. One thing I’ve learned through this experience is that the doctors and transplant team at the U really do know what they’re doing. She’s in very good hands here. They have earned our respect and gratitude. Dr. Omar was right. They did get her better.
~Julia
P.S.   In case you’re wondering, Sarah missed about 3 weeks of classes during the hospitalization and recovery period in October and November. She was able to make up work in a few of her classes, but had to medically withdraw from one, and take an incomplete in another. Her good grade in that class is frozen until she makes up some class and project time this semester and then she will earn the grade she deserves, instead of one that reflects three weeks of missed classes. The other one, she’ll have to re-do another semester. She’s back in school again for her 4th semester and looking for a job now, too.
        Also, the most awesome thing happened with her recent procedures. The anesthesia she received on the first in October made her an emotional wreck. For the 2nd one, they used something else that made her super nauseous. The third time, her coordinator suggested that she just take a little Valium for her anxiety prior to her appointment and try the cath and biopsy without any anesthesia. It was amazing. She has done the last two that way, and comes out of the procedure happy, hungry (eating and drinking immediately), and wide awake. Don’t tell, but last time she recovered so quickly, we just “chilled” there together in her little recovery station and watched a show for a while to kill some time before her clinic appointment. 🙂 It’s awesome to see her courage, growth, and trust in the team that is caring for her. She truly is one tough cookie.

Finale

About a month ago (boy, how time flies…) Sarah had her very last appointment with her beloved transplant team at Primary Children’s Hospital. I can’t believe we’re at the point of closing that chapter of our lives and moving on. It’s been in the works for a long time now, but it’s still hard to let go. Lots of newness coming our way!

Sarah’s annual heart cath and biopsy went amazingly well. Having not had one for so long, she was out of practice and a little nervous. She had told the nurses that she wanted some versed (we call it happy medicine) to help her relax before they took her in. By the time the anesthesiologist came to talk to us, though, she had decided she was fine and didn’t want it after all. There is something amazing that happens as your medically-experienced child grows up. It’s incredible to see how she’s learned to cope with and now let go of the anxiety of these procedures. It was fun to watch her walk in and greet everybody like she owns the place and joke with them about the doctor’s bad taste in music. She did so great, and whatever they gave her to help her sleep during the procedure was a magic cocktail. She woke up feeling good, alert, happy, and totally nausea-free. That made her recovery so much easier. Her heart pressures were nice and low, coronary arteries wide open and beautiful, stent stable and strong, and labs were all wonderful. Most of her numbers are perfect. Better than they’ve ever been. There were NO donor specific antibodies (DSAs), which we were especially grateful to know. Her angel heart is healthy and happy in its new home.

And yet… biopsy results came back showing mild rejection (C2 V3 ISHLT0, pAMR2). It’s a puzzle to me how everything can look so perfect in every way and the biopsy still comes back like this…. The team (together with her new team at the UofU) decided to not change anything. They figured the rejection was a direct result of lowering her Tachrolimis (Prograf) dose (one of her anti-rejection meds). They brought it down a month before her biopsy to see how her body would react. They need her at the lower levels by now because higher doses of that medicine can cause lots of other problems if taken long-term. This is truly a balancing act and makes me grateful for the practiced and meticulous acrobats that handle her care. They added a new cholesterol medicine to keep her arteries clean, and left everything else the same. With a little bit of hope, and trust (and maybe some prayer, and pixie dust for good measure) her body should get used to the new lower Prograf dose (since she had no DSAs) and even itself out. She’s got some blood draws coming up to check things, and a follow-up appointment with the heart transplant clinic at the U next month.

In the meantime, she’s still at school in Salt Lake learning all she can about being all grown-up and living on her own, taking care of her medical needs all by herself, building life-long friendships, and picking up an occasional tid-bit or two about interior design. Life is so good for her right now. A pretty good finale for this part of her journey, I’d say. 🙂

~Julia

P.S. It was really quite strange to leave her in the capable hands of her boyfriend and roommate for the last 16 hours of her 24-hour adult-supervised recovery and head back home without her. I guess in time, I’ll get used to that change, too.

National Donate Life Month

NDLM_2015_FacebookAd_with WebsiteI had great plans to write this post at the beginning of the month, post stories of our new transplant friends to tug on your heart strings and convince you how important organ donation is, and motivate you to register to be an organ donor. The month whizzed past me though, and I fear I have now missed that opportunity. However, I’m guessing most of you who read this blog regularly have already been convinced. Watching Sarah’s journey and the miraculous change that has taken place through her second chance, should be enough proof to help you decide if you were sitting on the fence about registering to become an organ donor.

In observance of Donate Life month, we’ve been flying our Donate Life flag (whenever the weather has not threatened to tear it from its hooks), and been involved in planning the first Dash for Donation in Pocatello to be held the end of June. (More about that in a later post.) Steve called in to his friend Neal’s morning news talk radio show (on KID 590 AM) on Sarah’s heart birthday to talk about the importance of organ donation. (I wanted to post a link so you could hear it, but the sound isn’t working, so we’ll post that later, too.) There are currently more than 123,000 men, women and children waiting for life-saving organ transplants. 18 of those people die every day waiting. Here’s the crazy thing… 90% of Americans are aware of organ donation and support it, but only 30% have done anything about it. Why don’t they? I’m guessing they must have questions, don’t really understand, or simply haven’t cared enough to register.

Here’s a great video by HRSA posted on the Donate Life America website that explains organ donation and transplantation, and how it works. Click here to watch it.

Because someone said “yes” Sarah is living a life we never dreamed she’d have. Because someone said “yes” her little friend, Zack is pretty healthy (though his kidneys don’t particularly like the anti-rejection meds), growing like a weed, and doing all kinds of normal kid things. Because someone said “yes” our friend Abby gets to be a teenager and recently went to her first school dance. Because someone said “yes” Sarah’s blog buddy Lauren is serving an LDS mission in Salt Lake City and sharing the joy and peace that the gospel of Jesus Christ brings. Because someone said “yes” just a couple of months ago, our little friend Alex got another chance–just in time–and is home with his family and doing well now. Because someone said “yes” our cute friend Owen has had a great year and a half to be a “regular” kid. (He’s having some struggles right now, but he’s a fighter, and his angel heart seems to be healing and responding to treatment. Thank you for your prayers.) Because someone said “yes” our sweet friend Shiloh has been given an opportunity to grow up and run and play with her big sister. Her mommy said I could share a little news clip about their family and organ donation. Click here to see the cuteness. These sweet friends are just a few of the many kids we’ve been privileged to know personally and watch the miracle that came with life-saving organ donation. We love them all… and especially the people who gave them another chance.

~Julia

P.S. If you’re not already, the Donate Life America link above (or on the sidebar) will lead you to more information and connect you to your state’s registry. Thank you, from the bottom of our hearts.

 

Happy Heart Birthday!

DSC_0024aSarah’s two year anniversary with her angel heart was last Tuesday. I can’t believe it’s been two years already, and I really can’t believe how well-adjusted and comfortable her new heart has become in the last two years. As we contemplated our many blessings, we overflowed again with gratitude for her donor, and the sweet family that was left behind. With such a beautiful healthy heart, her donor’s life must have ended abruptly, and and we are so very grateful his/her family said “yes” even with such a difficult loss. We had a quiet little celebration with our family that was home (we missed Rachel so much) with a small, yet sparkly, balloon launch. DSC_0030aWe gathered together in the back yard huddle-style while Steve offered a solemn prayer of gratitude for Sarah’s new life, and comfort for her donor family. As we each took turns sharing what we are grateful for through this experience, we let our balloons go and watched them float to heaven in honor of her heart angel. It was a sweet moment of peace and reflection. I set up a “pay it forward” event on Facebook to help us honor Sarah’s donor’s life, and was completely overwhelmed when in just two days more than 2.5K “friends” had been invited to participate and do a random act of kindness in Sarah’s name on her heart birthday. The tears flooded my eyes to see that almost 100 people had committed to “pay it forward” and many others probably did without even letting us know. Thank you to everyone who did something kind for someone else that day. The greatest gift that could ever be given to our daughter can never be repaid, but it helps knowing that anonymous service and love is being spread around the country (or world?) in a very special angel’s honor. SeanMcGrath2

Sarah’s been home for a week or so after finishing her first semester at LDSBC. She has had so many good experiences there and has made so many good friends. She loves her life in Salt Lake, and can’t wait to go back next weekend for her summer semester. College life looks good on her, and she is so happy. Wisdom teethWhile she was home, we took advantage of the break and tortured her a bit by having her deeply-impacted wisdom teeth removed. She didn’t want to be awake for it, so we opted for surgery at the hospital. Except for the three-try IV placement, all went well. (We sure missed the pro’s at Primary’s during that. Her wrist is almost as bruised as her poor chin is now!) Although she’s a little less “wise” now, she is recovering very well, and has checked off another “normal” young adult experience on her list.

Some of the things we’ve learned…. The world is full of good people with good hearts, who find joy in doing good things. Life is full of good (but sometimes hard) experiences that cause us to stretch, but always to grow. This journey we’ve been on has been full of God’s good blessings and never-ending love. ♥

~Julia

Movin’ on

Sarah had another cardiology transplant clinic appointment near the end of February, where all went well and labs, echo and exam looked great. We took a tour of the Cardiology Transplant Department at the UofU in preparation for her transition there this summer. We met one of the transplant coordinators who seemed really nice. (We already met the other one when she was being evaluated originally there for transplant, and she’s excited to have Sarah back.) We learned that if everything looks good at her annual cath & biopsy next month, things change dramatically once she gets to the U. At the adult clinic, (as long as things are going well) they only see you once a year for a full-day of cath, biopsy, poking, prodding, and testing. Beyond hospital_monumentthat, there are only quarterly blood draws, and simple phone calls to transplant if she gets sick, sees a doctor for anything, has any other health related issues or questions. I’m sure I audibly gasped when I learned that at year 5, the now annual biopsies will stop completely…. Oh, gone are the days of monthly/quarterly clinic visits, check-ups, and periodic reassurances to mom and dad that all is well in Sarah’s angel heart. Pretty incredible and so very exciting, but kind of unnerving, too. Her annual cath/biopsy had to be postponed until May for her wisdom teeth surgery, so that will be on the 11th, and will be our very last appointment at Primary Children’s. Transition to the adult world was eminent, but I think with her choice to do her last annual at Primary’s instead of the U, we’ve managed to suck every last possible moment out of our care there! So…here’s to growin’ up and movin’ on! Wish us… oh, I mean…wish Sarah… luck! 😉

~Julia

CHD Awareness Week 2015

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Yesterday was the first day of Congenital Heart Defect Awareness Week. Sarah’s journey dealing with her CHDs and subsequent heart transplant has affected so many more lives than just her own. This week we remember sweet angels and fighting survivors whose incredible hearts have touched all of ours….

I was just looking and I can’t believe it’s been three and a half years since we started this blog to chronicle Sarah’s transplant journey. It’s been that long since I was thrown into this heart world, meeting other heart moms and dads in the Intermountain area, and started to realized that it’s not a journey we’ve been on by ourselves. Many have walked this path before us, and still more are following behind us. There are so many people affected by congenital heart defects in this world. I bet besides Sarah, you know at least one other person who has had heart surgery of one kind or another. If you don’t, I bet you know someone who does. I am also willing to bet that if they’re under 30, it was most likely a CHD that needed repair.

In an effort to support the little people who struggle to stay alive, and the families of those whose tiny hearts just couldn’t work any harder, I offer my love, prayers and a gentle push for CHD Awareness. Here are a few CHD Facts you might not know…. (courtesy of Intermountain Healing Hearts)

  • Nearly one of every 100 babies is born with a CHD. Congenital heart defects are the #1 birth defect in the world.
  • Congenital heart defects are the leading cause of all infant deaths in the United States.
  • Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
  • More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
  • Surgery does not cure CHD. Many children will require additional surgeries and lifelong maintenance to sustain their heart health.
  • There are an estimated 2,000,000 CHD survivors in the United States.
  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
  • There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • In the United States, twice as many children die from congenital heart defects each year than from ALL forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

As hard as some of these facts are to read, I know that most of us wouldn’t trade the paths we’ve traveled for anything. These special children come into our lives and are immediately a source of light, a reason for hope, and a strength to many. They make us who we are. Talk to someone you know who is affected by CHD, ask if you have questions, and pray for healing and hope for the families whose “babies” are struggling right now.

If you’d like to do more, Intermountain Healing Hearts is having a social media campaign this week called Heart on Your Sleeve we’d love for you to participate in. They also accept donations for research funding at this same link.

~Julia