Written by Ryland’s mother, Margaret Fontanilla
When I started working in the NICU as a new graduate nurse, I felt like a baby myself at 21 years old. More than a decade later, I gave birth to Ryland at 25 weeks gestation at the same hospital I’ve worked almost half of my life.
Having worked in the NICU for so long, I knew there were many things that could go wrong. But what scared me the most was necrotizing enterocolitis (NEC). I asked about donor milk, human milk-based fortifiers, and probiotics, but unfortunately, our hospital didn’t have the resources. Sadly, my son developed NEC at 6 weeks of life.
Ryland had been doing really well until he developed NEC. After visiting him the night he took a turn for the worse, my husband told me our son had been inconsolable. At home, I was waiting for his NICU camera to go back online. When it was down for hours, I knew something was wrong. That’s when I got the dreaded phone call in the middle of the night. They informed us Ryland had to be intubated. His tummy swelled and was firm to the touch. Six weeks into the NICU and my son was on a ventilator, which he had never needed before.
That week felt like a blur. I turned on my nurse brain and stayed by his bedside as much as I could. I connected with my NICU colleagues, and I was fortunate that they listened and welcomed me as part of the team.
Three days later, however, Ryland’s condition hadn’t improved. I looked at his dwindling platelet count and cried my eyes out to the neonatologist, begging him to call the surgeon as I knew then he would have to be treated surgically. After being loaded up the whole night with more blood products, Ryland underwent surgery the next morning. It would be the first out of four NEC operations.
Ryland ended up staying in the NICU for another seven months. My husband and I learned to be patient and manage our expectations, especially when things didn’t go according to plan. Ryland’s third surgery was supposed to have been his final operation, but it wasn’t. Thankfully, his fourth surgery seems to have done the job.
All through this, I learned to let go of any of my own pride. I asked for prayers because I knew my son needed them. I cried when I could, slept when I could, and ate when I could because I knew I had to be strong since my son needed me. I learned kindness goes a long way, and how important it is to fight for my son.
Ryland has now been home for two months. He still has a PICC line for his IV fluids that we run at night. Amazingly, he is eating well and gaining weight. I’m praying he stays on track so he will be off IV fluids completely by his first birthday and finally have his first tub bath!
I recently returned to work in the NICU. Having just been on the other side, it’s given me a new level of empathy, especially for the parents. This is just one of the many reasons why I am now a Nurse Ambassador for the NEC Society. I look forward to being more involved and helping to eradicate this disease. I know sharing my story will help others feel less alone so we can come together to build a world without this devastating disease.