Let Us Introduce Ourselves…
Alicia & Ollie
I’m Alicia, President of Heart Families of Nevada. I was 25 years old and 23 weeks pregnant when the ultrasound tech told me something didn’t look quite right with our baby boy's heart. I didn’t know what to say or do. The last thing anyone wants to hear is that something is wrong with your baby that is growing inside of you. After a few more weeks, a change to a high risk doctor, and lots of doctors’ appointments, we found out that our sweet baby boy had a double right sided aortic arch with a vascular ring. This means that Oliver had two aortas instead of one and the aortas were wrapped around his trachea and esophagus, crushing them and causing a vascular ring. We found out afterward that our sweet baby would need to have heart surgery shortly after birth. We were so worried and scared for our Oliver.
A few days before Oliver was born I met another heart mom named Brooke. She came to my house the day he was born and dropped off a hospital survival kit. This brought me to tears and included things like, baby blankets, socks, and hats for my baby to wear while in the NICU. I cannot express how much it meant to have someone who went through what I was about to go through come to support me and help me. I knew I had to pass this on to other heart moms and families.
After Oliver was born he was closely monitored in the NICU for a few days but was then able to come home with us. A few weeks later we were back for the surgery to correct his double right sided aortic arch and vascular ring. Having someone take your baby away from you to go perform heart surgery is something I would never wish upon anyone. It was scary and so hard. But we also knew that Oliver was in the best of hands. Our surgeon was Dr. Ciccolo, one of the best pediatric thoracic surgeons in the nation.
Thankfully, the surgery went well and Oliver was such a strong little heart warrior. It was a big and hard recovery for such a little body but after a stay in the CICU we were able to take our sweet boy home!
After we got home, my husband and I felt very strongly that we needed to help other heart families get through their journeys. Because of our experiences and the many people who blessed our lives, we decided to start Heart Families of Nevada. We create heart family care kits for the families to use while they are in the hospital. Having a baby diagnosed with CHD is life changing and we want these families to know that they are not alone! We know how much it means for someone to show you the love and support that can only be offered by someone who understands and has been through what you are going through. We hope to continue to grow and help thousands of families through their heart journeys!
Alexis & Celine
Hi I’m Alexis, Vice President of Heart Families of Nevada, and mom to Celine. Our story began when I was 24 weeks pregnant and our ultrasound technician found an anomaly with Celine’s heart. She was diagnosed with a coarctation of the aorta, a vascular ring and a VSD. This discovery was shocking and very emotional for me and our entire family. As a new mother hearing there’s something wrong with their unborn baby’s heart, you feel so scared and alone. We went to Desert Perinatal with Dr. Wilkes who truly took the best care us, along with the best cardiologists from Children’s Heart Center of Nevada. But I still felt so scared for what motherhood would be like with a heart baby.
A week before Celine was born I met Alicia, a heart mom who introduced me to her son Ollie who had a similar diagnosis and heart surgery. She insisted on meeting me to give me a heart family basket, filled with thoughtful and useful items to help me bond with my baby and care for myself while in the NICU and CICU. I can’t say enough about how comforting it was to connect with another mom who understood what I was going through when I felt so numb. She told me I wasn’t alone, and what happened to Celine was “normal”. I needed to hear that so badly and suddenly my perspective turned around... I began to feel optimistic.
Celine was born on January 22, 2020 via scheduled c-section, and underwent her open heart surgery on January 29, 2020 at one week old. To hand our beloved baby to Dr. Ciccolo to repair her heart was the hardest and best decision we ever made. Nothing can prepare you for that pit in your stomach feeling of worry and concern. We spent over an agonizing month in two different hospitals (Las Vegas and Phoenix) undergoing two surgeries before Celine finally came home. And when she did, it was the best homecoming for our family to have her home healthy, happy and thriving!
Makenzie Johnson
Hey, I’m Makenzie, secretary of Heart Families of Nevada. I was 25 weeks pregnant when I was sent to a high-risk doctor with complications on my end. There an ultrasound was performed to check on Magnolia’s growth. During the ultrasound, I felt like something wasn’t right, a few minutes later, the ultrasound tech told me she found an issue with Magnolia’s heart. I will never forget that moment sitting alone feeling so defeated and heartbroken, waiting for results, hoping it was a false finding. Once the high-risk doctor came in, she confirmed that Magnolia had a double aortic arch with a vascular ring. I was shocked, mainly because I had just had my 20-week anatomy scan with my regular OB and was told that her heart looked fine. We were told Magnolia would need surgery to correct the defect sometime within the first year of life. As a first-time mom, it was so scary not knowing the unknown, but the cardiologist we met leading up to the birth made us feel like family, and we knew we were in good hands.
On November 2, 2021, Magnolia was born a month early. She was sent straight to the NICU, where she was monitored closely. At three weeks old, we walked Magnolia into the OR to have her strawberry-sized heart made stronger by surgeon Dr. Ciccolo. It was the most gut-wrenching decision to hand our daughter over to the nurses, but we knew it was the best decision for her. When Magnolia was four days post-op in the hospital, Alicia and Alexis came to deliver a heart family basket to my husband and me. I was in a complete haze trying to get through that day, but I remembered being so happy to have finally met someone with children with a similar diagnosis and had been in our shoes. Their emotional support was such a blessing to us during a difficult time. Magnolia was discharged a few days later, and after spending a month in the hospital, we were so incredibly grateful to bring our daughter home happy, healthy, and flourishing.