“I want to take a moment to express my deepest and most heartfelt gratitude to Totally Kids Rehabilitation for their incredible support in helping me bring my daughter, Emma, home. Emma entered the world far too soon, arriving at just 26 weeks due to serious pregnancy complications. From the very first week of her life, we were faced with unimaginable challenges when we learned that she had developed two air leaks in her lungs, a condition known as pneumothorax. As a result, she was intubated and placed under close observation to monitor her condition.
Like many parents of premature babies, we endured a whirlwind of daily worries and fears, constantly wondering whether our little miracle would survive and go on to thrive like any other healthy baby. Our NICU journey began with five grueling months characterized by uncertainty and an overwhelming emotional rollercoaster as Emma gradually struggled with her breathing. After reaching 46 weeks of gestational age, we finally received the news we had been hoping for—Emma was taken off CPAP. Yet this victory was met with another challenge; she developed a significant aversion to eating from a bottle, resulting in a heart-wrenching situation where she was consuming less than 10% of her nutrition orally.
After exhausting numerous feeding methods, the doctors presented us with a very difficult option: a G-tube. As a mother, I found this to be an unbearable consideration. Despite our fears, we decided to transfer Emma to Loma Linda Hospital in hopes of giving her more time before making such a monumental decision, however, before that transfer would occur the NICU doctors were presented with an alternative at Totally Kids Rehabilitation. We learned that they specialized in working with NICU babies struggling with oral aversion. This program offered a glimmer of hope, igniting our belief that there might be an alternative path for Emma that didn’t involve a G-tube.
The program was filled with invaluable resources tailored specifically for premature infants like our little girl, who had spent most of her life in the NICU. A weight was lifted when we found out that one parent could stay overnight with Emma. I immediately resolved to remain by her side for the duration of her stay, providing her with the comfort and connection she needed.
My husband and I made significant sacrifices to prioritize Emma’s well-being. The first week was exceptionally tough; adjusting to the new environment, being away from the familiarity of home, and the emotional toll of feeling helpless resulted in numerous emotional breakdowns. Thankfully, the staff at Totally Kids became much more than caregivers; they evolved into our essential support system, guiding me through those daunting and challenging nights. The unwavering commitment of both the day and night shift nurses provided us with the strength to navigate our toughest moments. The therapists—Speech, Occupational, Physical, and Recreational—truly transformed our experience. Their exceptional expertise allowed them not only to tailor their approaches to the unique needs of each baby but also to build profound connections with both the children and their families.
To further enhance our experience, we were fortunate that doctors and the nurse practitioner visited us daily. They took the time to openly address any and all of our questions and concerns with genuine kindness, knowledge, and relatability. This atmosphere of support made a tremendous difference in our journey. What initially felt like a painful ordeal gradually evolved into a life-changing experience for both Emma and me. As the days passed, Emma began to make remarkable progress, and for the first time, we could see a light at the end of the tunnel. After 37 days filled with hard work and determination, we were finally discharged from the hospital, and we did so without the need for a G-tube.
For anyone facing a similar situation, I wholeheartedly recommend Totally Kids Rehabilitation. Their dedicated approach and compassionate care truly changed our lives. Emma’s journey is a testament to the incredible work they do, and we will forever be grateful for their support in helping us bring our daughter home.”
–Written by Emmas Mom, Nancy
