Written by Amber, Brentlee’s mom.

It was an uneventful pregnancy. I had a little more stress than usual, but nothing I couldn’t handle. The delivery was uneventful as well. A scheduled C-section at 39 weeks. She came out crying and we took her home after two days. Something just didn’t seem right, though. She was unable to hold down breast milk, so the pediatrician and I decided she must be lactose intolerant like her sister was, so we swapped her to formula after two weeks. At 3 ½ weeks, she still hadn’t made any progress, so I took her in to discuss another formula change. Once at the Pedi, they discovered she was running a 100.4 fever. Just enough to send us over to the local ER for a workup.

Once in the ER they ran their routine test and discovered something going on inside of her little belly. We were flown to Children’s Medical Center in Dallas and the roller coaster began. Once there, the doctors uttered the words Necrotizing Enterocolitis, or NEC. It was all a blur, nothing made sense.

Weren’t we just home all snuggled in bed?

NEC typically affects premature infants, but there are rare cases like Brentlee’s when the disease affects full-term infants. The NEC that affects full-term infants appears to be of a different etiology than the NEC that affects preemies.

Brentlee required surgery to remove some of her bowel that died, and we spent 98 days in the NICU, which was the most scary, humbling roller-coaster ride we had ever been on. Unfortunately, NEC claims the lives of nearly 500 U.S. infants each year, but we were lucky enough to keep our little angel. NEC was just the beginning of our long journey. Once in the NICU she also contracted enterobacter and klebsiella through her central line, staph, rhinovirus, and she developed a blood clot in one of her main veins. She was unable to absorb the nutrition she needed, so she had to have a feeding tube.

What should have been the most awful, miserable 3 months, ended up being the most humbling experience of our lives. Through all of the set-backs and discouragement we found light in her smile. She never gave up, no matter the circumstance, so we never did either. Brentlee is the strongest, most courageous little girl I have ever met. Most people wait a lifetime to meet their hero, and I gave birth to mine.