Naomi's Heart Journey

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Naomi's Heart Journey Naomi was born 3/22/2016 with HLHS and other heart issues. She received a heart transplant on 8/15/2016. She is now in remission from PTLD.

This page is to help keep our friends updated on her journey. Our daughter Naomi was born with a broken heart on March 22, 2016. We were completely unaware. She was airlifted to another hospital and after tests, we were told she has a "one of a kind, unique heart", and that she needed a transplant. She waited in ICU for 145 days before receiving a new heart. We honor the hero who saved her life through organ donation. Naomi came home for the first time, 5 days short of six months old. Transplant is not a cure, but it is a chance for a better life than the one you had before. Naomi must take medications every day, her whole life, to help her body not reject the heart. Because of the meds, she will be susceptible to more illnesses that may land us in the hospital here and there. She will need regular biopsies of the heart and special check-ups. We are walking this journey in faith and we welcome you to be part of the amazing work God is doing through our baby girl.

I didn't want to remember, at first. The journey was already heartbreaking and hard enough. But I'm so glad I said yes w...
15/08/2025

I didn't want to remember, at first. The journey was already heartbreaking and hard enough. But I'm so glad I said yes when our hospital social worker asked if we wanted to start Beads of Courage. It is the most powerful representation of Naomi's survival and triumph over so much. She can show her scar, I can recite her surgeries. But her beads SHOW every needle stick, night inpatient, x-ray, chemo infusion and heart surgery. It's the most tangible thing a child can view with pride and bravery. Let's do another nine years! 😁

We've marked every "heartiversary" by giving back in some way to a group or organization that has helped Naomi. The firs...
15/08/2025

We've marked every "heartiversary" by giving back in some way to a group or organization that has helped Naomi. The first year, we held a gift card drive to gift every family in Duke's pediatric cardiac ICU. The second, we helped with a fundraiser for Donate Life NC. The third, we gave funds to Naomi's child development center. Fourth year, we hosted a donation drive for Levine Children's Hospital's cardiac ICU, for kids' blankets, socks and headbands. Fifth through eighth years saw us give to Naomi's elementary school, Beads of Courage, a year of random donations in the community, and a request to help a friend who had cared for Naomi before she could attend daycare.
This year Naomi is quite adamant she does not want to take part in any giving. As her mom, I can understand how she feels and I respect that. But you are still going to get a request from me!
About seven months after we became a family of three, I lost my job due to budget cuts. I looked for work for 18 months. One of the nonprofits that kept us fed--and we know how much Naomi loves food--is the Fuquay Varina Emergency Food Pantry. In fact, if you remember, Naomi was very clear that for her 5th birthday, she wanted to do a food donation drive for them. A photo from back then is below.
These volunteers do hard work, important work. Tasks that don't always get noticed or praised. But they keep showing up because they care about people. They know children shouldn't go hungry. And the food is really good!
So, if you can, please make a donation to the Fuquay Varina Emergency Food Pantry today. I went yesterday in person (they are on site Tuesdays and Thursdays) and shared Naomi's story and wrote them a check. They were very touched and I know they would be so grateful for your support, in memory of Naomi's donor and in thankfulness for these nine years with her. Thank you so, so much. https://www.fvfoodpantry.com/

Nine years ago today, Naomi received her new heart, the gift of life. She was transplanted in the small hours of 8/15/16...
15/08/2025

Nine years ago today, Naomi received her new heart, the gift of life. She was transplanted in the small hours of 8/15/16 and came back to us with pink skin instead of dusky blue. She was kicking through the anesthesia and woke up alert. It was amazing to see the change.

The donor family accepted my letters for a while, but did not write back. I understand and respect their privacy. Then they moved, and I've been unable to reach them. As this sad anniversary for our donor's father, sister and brother comes each year, I hope they still know I remember them. I'm so thankful for these nine years I've been gifted with Naomi. For precious memories as a family and special moments with her sister, for miracles witnessed and not letting defeat have the last word. We'll always try to honor Naomi's donor and hold her memory alive.
I am indebted to groups that have lent their support and encouragement like Beads of Courage, Children's Organ Transplant Association - COTA, Levine Children's, Donate Life North Carolina, Kid Again - Central Carolinas Chapter, Make-A-Wish Eastern North Carolina, Icing Smiles, Inc., ELONTHON Dance Marathon, HonorBridge and others. I'm grateful for the perspective this journey has given me: every day is a day to celebrate being alive, having another moment with people you love, doing things you have passion for. 💙💚

Every year, World Organ Donation Day is marked on August 13 to raise awareness about the life-saving power of organ dona...
13/08/2025

Every year, World Organ Donation Day is marked on August 13 to raise awareness about the life-saving power of organ donation and to honor donors and their families for their selfless contributions.

In 2025, the day falls on a Wednesday with the theme “Answering The Call”, set by the Organ Donation and Transplant Alliance. The theme acknowledges the work of healthcare professionals in the field while urging greater public participation and cooperation in organ donation.

Thank you all 💙💚💙💚💙💚

Naomi is honored to be included in a new donor photo wall at HonorBridge, our local organ procurement organization. OPOs...
19/07/2025

Naomi is honored to be included in a new donor photo wall at HonorBridge, our local organ procurement organization. OPOs are the transitional partner between donors and recipients. They pair potential donors with the next best match on the organ waiting list. They took some wonderful pictures yesterday and we look forward to seeing the finished wall!

Good morning! It's day 10 after Naomi's first symptoms and she's still testing a faint positive. She's getting breathing...
01/07/2025

Good morning! It's day 10 after Naomi's first symptoms and she's still testing a faint positive. She's getting breathing treatments and percussion vest use. Her O2 is good, but she is still coughing a lot, and stuffed up. I check in with Levine and they say she's doing well, considering.
I do feel all our precautions to protect Naomi were worth it. Getting Covid at age 9, instead of 4 or 5, gave her lungs more time to grow, and allowed more time for the vaccine to be fine-tuned. If this had happened in 2020 or 2021, Naomi may very well not have survived it.
Hopefully one last day of interventions will make the difference. She still wants to eat, and play, so we do a lot of coloring and games. Thank you so much for wishing her well and lifting her up! Here's a picture from a couple weeks ago where we toured a tiger rescue center. Naomi loved seeing them up close.

We avoided it for over five years, and Naomi now has Covid-19. Thankfully she is current with her vaccine, which means s...
27/06/2025

We avoided it for over five years, and Naomi now has Covid-19. Thankfully she is current with her vaccine, which means she has enough immunity to stay home and treat the symptoms. If she gets any worse, I will need to consider taking her to the hospital for inpatient/infusion treatment. She says the cough is the worst part right now, then feeling hot and the sore throat.
This is a photo from camp last week--Naomi enjoyed canoeing and "corcling", which is solitary canoeing in an inflatable tube.

Naomi is a rising 4th grader! 3rd grade was difficult and we have some remediation to do, especially in math. But true t...
14/06/2025

Naomi is a rising 4th grader! 3rd grade was difficult and we have some remediation to do, especially in math. But true to the class award she received (Evergreen Effort), she always tries and wants to succeed. She's tenacious and spirited. Thankful to her donor for these gifted days. 💚💙

Hello again! It's been an incredibly busy day. Naomi had eight tubes of lab tests drawn, then saw the oncology doctor. T...
06/06/2025

Hello again! It's been an incredibly busy day. Naomi had eight tubes of lab tests drawn, then saw the oncology doctor. The rituximab that cleared her lymphoma also removed her immunity from previous vaccinations, which was confirmed in her labs. So we have started a schedule to re-vaccinate Naomi.
Then she saw the pulmonology doctor where she took a spirometer test. She has good lung function, and the doctor will culture some of her phlegm since she is having some sinus issues right now. We were asked to continue using Naomi's percussion vest and inhalers for now.
Then we visited nephrology where they are testing Naomi's creatine level. As we approach nine (!!) years with the new heart, there's more concern about the work the kidneys are doing to filter the immune-suppressing medications. But for now, kidney function seems alright. We will see the urology team when we return in September.
And last we saw the cardiology team, where Naomi got her echocardiogram and EKG. These showed good heart function. Her doctors asked a lot about how things are going at home, and school, and the nutritionist came in to talk directly to Naomi about eating less sugar and drinking more water.
It was storming all day, so the drive home took longer. I'm very thankful for overall good reports and that Naomi gets to sleep in her own bed tonight!

Good morning! Naomi is in Charlotte for multiple clinics today. She will see doctors for her heart, lungs, kidneys and P...
05/06/2025

Good morning! Naomi is in Charlotte for multiple clinics today. She will see doctors for her heart, lungs, kidneys and PTLD. Hoping for good reports across the board!

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