Meet Caela | Mother of Two

This Mama's story...

Being a mom is wonderful. The most rewarding part of motherhood is watching my kids conquer the world, defy odds and exceed all expectations. I am Caela and I am the mama of two toddlers; Sawyer, 4 and Cruz, 2. Originally a California girl, my husband Adalid and I now live in Maryland with our two children. I am a full-time working mama and although it is not easy, with constant communication and teamwork with my husband, we make it work! As parents, we have had quite the journey thus far but we are always evolving and growing with our children and their needs. When my daughter Sawyer was born our world shifted, but our world completely flipped upside down when our son Cruz came along. With Sawyer, it was long nights with little to no sleep and adjusting to the fact that we could not go anywhere or do anything without bringing her along. These were adjustments that we were at least somewhat prepared for. What we were not prepared for was the flip. With Cruz, we had no idea that anything was wrong until the day he was born. Once he entered our family, our lifestyle changed dramatically. It was chaos at first and then it became our new normal.

Cruz was born on his due date, June 17, 2016.  The entire pregnancy had been healthy and normal so it was a complete shock when he was whisked off to the NICU. Over the next couple of days, it became clear that Cruz needed the best medical care possible to help him survive. He was transferred to Johns Hopkins and stayed there for 4 months. At Johns Hopkins, Cruz was diagnosed with Pierre Robin Sequence, Ventricular Septal Defect (VSD), broncho- and trachomalacia, and lung disease. We would learn later that his main diagnosis is Campomelic Dysplasia (CD), a very rare form of dwarfism with an exceptionally low survival rate. The mutation in Cruz that caused his CD is the only known form of that mutation in the world.

At 2 months, Cruz received his trach and he started to do better but It was clear that he needed his heart repaired ASAP. Once he received his VSD repair he did a complete 180. His sweet personality started showing through more and more and he was able to reach milestones that, at a few points in his life, no one thought he'd reach. He was ready for his graduation to the rehab hospital. Rehab was an 8-week whirlwind of intensive training for Adalid and I. We learned how to care for a baby who had a trach and was tube fed. Ten days before Christmas 2016, we were able to take our sweet baby home. Home, however, wasn’t all sunshine and rainbows. In the year and a half that followed, Cruz has been to the operating room on 11 separate occasions, has had at least 34 procedures and has been intubated and medically paralyzed for an extended period of time. To date, he has had a mandibular distraction surgery, a tracheostomy, an open-heart surgery, a g-tube placement, a cleft palate repair, and, most recently, two granuloma removal surgeries. Not to mention that he receives a bronchoscopy every time he goes into the OR. This kid has been put through the ringer.

When I was first allowed to hold Cruz chest to chest after his heart surgery, I was in a rocking chair and we rocked for hours. The rocking motion was very comforting for my babies. They were always the calmest and safest in my arms rocking back and forth. Whether I was nursing them, comforting them, cuddling them, or rocking them to sleep, these were the moments I felt most connected to my babies.

When we first came to understand that our baby was broken, it was soul crushing. It got a lot worse before it got better and there were some very dark days. What got us through those dark days were the wonderful doctors and nurses who work in the PICU for Johns Hopkins Children’s Center, our family, and our friends. We met wonderful people in the hospital who also had children fighting to survive and we were able to forge a deep connection with them. Nothing is promised with Cruz. Because he has no one in the world to compare himself to, nobody can tell us what to expect or answer any futuristic question with much certainty. What we know for certain is that Cruz is the happiest, sweetest, smartest little boy. He has the best big sister who loves him unconditionally, a dad who has never been prouder of a son, and a mom who will go to the ends of this earth to fight for him. For now, that is enough.