I’m Blue and I’m a single mama to a sweet little toddler who is two years old, Calendula! 

We are so thrilled that Calendula just received a heart transplant after living together at the hospital for 14 months. 

Going through a health crisis in early childhood has been incredibly difficult and having help on Calendula’s heart transplant journey has been critically important to receive. We have the fortune of being able to join COTA to fundraise for the lifetime of transplant-related expenses. 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy youth. 100% of each contribution made in honor of their patients helps meet transplant-related expenses. COTA’s services are free to families, and all donations are tax deductible to the fullest extent of the law.

After noticing Calendula getting lethargic and regressing on eating and other milestones at 10 months old, I brought them into urgent care, where we were directed to the emergency room, where I then found out that Calendula was experiencing heart failure. Their heart was very enlarged and had a blood clot in their left ventricle. 

I had done everything “right,” I had attended their well-baby visits, noticed and reported their increased fussiness and decreased appetite and new grunting sound during a wellness visit in September, but it came down to the deep attunement I hold with my baby that pushed me to seek care beyond our simple wellness visit… Something was very off. It was the consistent, telltale grunt and increasing lethargy that pushed me to not wait longer. Cardiac doctors since have reassured me these symptoms can be easy to overlook outside of an acute care setting, easy for an everyday pediatrician to miss. 

We were given emergency transport to Seattle Children’s Hospital, the closest place for baby Calendula to receive specialized pediatric cardiac care. We learned their left ventricle struggled to pump blood effectively (which is how the swelling mounted and the clot formed), and they were stabilized with various medicines while the medical team began to explore what would be next. Their heart was very enlarged and after several weeks of optimizing heart medicines that help with function and positive heart remodeling did not show a significant improvement, so our medical team began to talk about heart transplant.

It is nobody’s plan to face such a difficult medical crisis with their children and it certainly wasn’t my plan to be a single mom, but I do know that we have an incredible community of people around us that have already helped so much. When we first entered the hospital, I did a gofundme that helped cover me getting to be with my baby at the hospital in a different city initially. Then, we learned that this journey of supporting Calendula is going to be much longer than a few weeks. The transplant process had us living far from home at Seattle Children’s Hospital from October of 2024 until April of 2026. All that time was particularly costly to be displaced from home and I will face ongoing transplant-related costs as a single mom and parent of two. I am so thankful for COTA, and for help with transplant-related costs.

This COTA fundraiser is meant to be large and ongoing to help us with all transplant related costs, from any medical expenses that may be not covered by insurance, to helping with the costs of traveling and living at the transplant hospital waiting for a heart (as there is not a pediatric heart transplant facility where we live).  Right now we’re fortunate to have OHP, a state health insurance plan, but who knows how programs like OHP will be gutted in the coming months. This fundraiser has already made a tremendous difference for us. 

This doesn’t just impact my child and I financially, we really had to uproot our lives and be isolated from our community. I took time off from contracting because, before I was a carpenter, I was a nanny and a teacher. I really value close and secure attachment. I wanted to be there helping Cali be grounded and to support them continuing to hit their developmental milestones despite requiring constant hospitalization to remain medically stabilized. Being able to take time off from working as a single mom and be in a different city with my baby in their foundational years is profoundly important, which is very tangible to me as a former nanny and teacher. I am happy and fortunate to be present here at the hospital in Seattle with Cali in order to give them the best emotional support to help my baby regulate through the medical trauma and the best nutrition support that I can, breast milk, which also provides them comfort and other health benefits. I long to stay closely connected and attached with them. Hospital nurses in the CICU are skilled and kind, but they are not babysitters or Calendula’s parent. I helped my child learn to walk three times during this time, they were almost walking independently when they needed to get a Berlin Heart, then they even had to learn to sit again after heart surgery for implanting the Berlin Heart, then they were almost walking with the Berlin Heart when they received their heart transplant, but regressed again after open heart surgery to receive their new heart! I am thankful to have been there to support my child’s persistence and development through all these big medical events. 

Having a parent present with them in the room not only helped Calendula emotionally and developmentally, it also meant a personal caregiver was consistently present to help make sure Calendula didn’t pull out any of their medical interventions, like their central line IV directly to their heart or their feeding tube, as most of their stay they don’t have a one-on-one-nurse, often nurse assignments are two-to-one or three-to-one. Less interventions having to be changed out and replaced means Calendula is more safe from infection and medical complications. 

I love being my child’s mom. I cherished getting to play with them trying to keep a routine together, despite medical procedures so frequently and workers in and out of our room at all hours of the day. It was an intense way to live, but I was glad I could be there the whole time. Even at times when I wasn’t able to breastfeed them for comfort due to medical interventions, I have had the privilege of at least being here to play them my ukulele and sing and pat their head until the hard stuff passes. 

Thank you for supporting COTA for Calendula and for sharing our story.