Oh our beautiful Cali Camille. It’s hard to put into words how miraculous her story is. Through the entire pregnancy, we thought our baby girl was perfectly healthy, even with multiple ultrasounds, there was no indication that something was wrong. Just to think I almost didn’t go to THAT doctor appointment where that one doctor noticed her heart was enlarged. Born on Jan.31st at 33 weeks 4 days diagnosed with dilated cardiomyopathy from a de novo genetic mutation MYH7 that just affects the heart muscle. With a EF of 5-10%, they didn’t think she would make it through the weekend. She almost went into cardiac arrest twice, had heart rates of 240, respiratory destress, intubated 6 separate times, developed stage 2 NEC, had to be on countless sedation medicines and opioids and was ultimately too small for any life saving device.
For months, we watched our baby girl fight for her life in a hospital room. Day after day, she showed a strength far beyond her tiny body. Through wires, monitors, sleepless nights, and impossible odds—she fought. And she won. From day one, Cali wanted to be here. Its all she’s ever showed. We are in awe of her every breath. Her courage. Her resilience. Her light, even on the darkest days. She smiled through it all.
38 days in NICU
91 days in CVICU (almost all intubated)
57 days in CCU
51 days on transplant list
Total 186 days in the hospital
We have been waiting for this day for months and I am proud to say that our Cali has officially been DISCHARGED TODAY!!! SHARE THE NEWS!!!! 🎉🎉🎉🎉To the donor family of her new heart — the thought of your baby tragically passing and y’all having the love and care necessary to be ok with donating their organs in hopes of saving another babies life …. it’s indescribable the pain that makes us feel for y’all and the joy it gives us to know your sacrifice wasn’t in vein. We can never repay the gift you’ve given Cali but we promise to carry your child’s legacy with love, honor, and gratitude for the rest of our lives.
To the incredible medical team, nurses, and support staff—you’ve become family. If you’re reading this, you know who you are. From the NICU nurses we met the day we walked in, to the doctors who had to continuously tell us the day to day scary reality of the situation, to the CVICU nurses who held her hand through her darkest times, to the transplant team members that found, chose and carefully transplanted her new heart. We shared a lot of tears, a lot of laughs, a lot of hugs and a lot of time. Those memories, we will share together for life and although some are painful to relive, they are equally as beautiful. We cannot put into words how grateful we are. Thank you for fighting for her and loving her like one of your own.
We’re starting a new chapter—one filled with hope, healing, and more cuddles than ever. Thank you all for your prayers, love, and support. We felt every single one and God heard all of them.
We honestly could not have gotten through this mentally without everyone. To our daughter: You are proof that miracles exist. You are the definition of strength. And you are our greatest hero. As daddy told you before heading into your transplant surgery, quote “You’re a bad m’fer. Don’t EVER lose sight of who you are and how strong and brave you are. I know you’re scared but we’re scared to. Everything is gonna be ok. We love you and will be right here, waiting for you, whenever you need us.”Please continue to pray for Cali as she continues on this part of recovery and continue to cheer her on. In this next step, she continues on oral sedation weans and will have no immune system through 6 month post transplant. After that her immune system will be able to start building but will be weak and prone to getting sick extremely easy. She will have countless of weekly appointments, labs, tests, and monitoring.
This journey has changed us forever. Our girl is a fighter, a survivor, and now… finally, a little one who gets to sleep in her own crib tonight. 🏡💕