To everyone who has followed our son Justin’s story, sent prayers, and offered supportive messages—thank you from the bottom of my heart. Your kindness has been a light in one of the darkest times of our lives. As a parent, the weight of seeing your child struggle for life is something I wouldn’t wish on anyone, but your support has made this unbearable journey a little more bearable.
Today, I visited Justin, hoping for some sign of improvement, but instead, I received news that broke my heart all over again. The neonatologist informed me that Justin’s already fragile heart has gotten much worse. The echocardiogram that was done today showed a severe decline compared to the one just five days ago. The rapid deterioration of his condition has left us feeling helpless, watching as the strength and hope we had been clinging to slips further away with every passing moment.
They started Justin on an experimental medication to help control the acid buildup in his body, caused by his condition. Thankfully, those levels have returned to normal, but the damage to his heart and brain has become too severe. Despite everything they’ve been giving him—seizure medications, diuretics, and other treatments—nothing seems to be making a significant difference. His swelling has increased in his face and feet, signs that his heart is failing. To see my baby suffering like this, knowing there’s little we can do, is unbearable. And even though they are doing everything possible, it still feels like we are losing him, little by little.
What hurts most, though, is the impact on our other children. Today, I brought my 3-year-old and 1-year-old to the hospital to visit their baby brother. Watching them love on him, so innocent in their affection, was gut-wrenching. My 3-year-old, in his sweet, innocent way, kissed Justin and said, “Look, he’s so cute. It’s going to be okay.” His words, though full of love, felt like a punch to the gut. The painful reality is that we don’t know if it’s going to be okay. But in that moment, I saw the purest love, and it crushed me to know what my children may have to face.
As we were leaving, my 3-year-old tried to take Justin out of his incubator, seemingly thinking we were bringing him home with us. It’s heartbreaking to see him so hopeful, unaware of the reality we’re facing. My 10-year-old has also been struggling. He’d been so excited to have Justin home and had even set up his bassinet and baby swing, convinced that his baby brother would be coming home soon. But today, after hearing the doctor’s words and seeing how fragile Justin is, my son broke down, unable to speak, unable to process the enormity of it all. The pain of seeing him hurt is just as unbearable as the pain of seeing my baby fight for his life.
What makes this even harder is the approach of the holidays. With Thanksgiving and Christmas just around the corner, I can’t escape the constant reminder of how different our lives are right now. Every Christmas song on the radio, every mention of family gatherings, only deepens the sadness. I’m terrified of the unknown, terrified of getting a call in the middle of the night or at any moment from the hospital. I don’t know what to expect anymore. The doctor was very clear with me today: Justin can’t keep fighting much longer. The emotional toll this is taking on me and my family is impossible to put into words.
I try to hold it together for my children, for my family, but it’s getting harder. The fear of losing Justin is consuming. What hurts the most is knowing that my children will have to face the loss of their baby brother, no matter how hard we try to protect them from it. Please, I ask for prayers not only for Justin’s health but for my mental well-being and the healing of my children. I don’t know how to help them process this pain, and it’s something we’ll carry with us forever.
Despite all the pain, I am so incredibly grateful for the staff at Children’s Hospital of Orange County. The nurses, the doctors, everyone who has worked tirelessly to care for Justin—they are doing everything possible to give him a chance. Their dedication has been a lifeline for our family, and I am beyond thankful for them. They’ve made us feel supported every step of the way.
As we continue to face this unimaginable situation, I am trying to hold on to the love and support from all of you. Your prayers, messages, and thoughts are helping me stay strong when I feel like I’m at my breaking point. I don’t know what the future holds for Justin, but I know that with the support of our family, the medical team, and all of you, we will get through this, no matter how difficult it may be.
Please, keep Justin in your prayers. And please, keep our family in your thoughts as we face this heart-wrenching battle. Every day is a gift, and we continue to hope for a miracle, even as we prepare ourselves for the hard truths. Thank you, from the bottom of my heart, for being there for us. It means more than you will ever know.