Tales from a NICU Journal, week five of thirteen

4th August 2024

A Promising Start

Last Monday, Benjamin was doing incredibly well. He’d had all his tubes removed—including his nose feeding tube—was taking full feeds from the bottle, and waking up on his own for milk. He was beginning to act like a normal baby, and we allowed ourselves a moment of relief and hope.

An Unexpected Setback

By Tuesday, however, things took an unexpected turn. Benjamin started showing signs of a cold and lost interest in his feeds. That night, he was moved back into ICU and placed on CPAP breathing support. The doctors began running extensive tests, alarmed by how quickly he had deteriorated.

There were no clear answers. They suspected a virus or possibly aspiration but couldn’t be certain. His feeding tube was reinserted, oral feeds were stopped, and he was placed back on the ventilator. The team began treating him for every potential virus or infection, running a full panel of tests, including a lumbar puncture.

A Difficult Time

This setback was incredibly hard to cope with, even more so than his initial surgery. Seeing Benjamin doing so well and then returning to the incubator with tubes, lines, antibiotics, antivirals, and breathing support was heartbreaking.

We endured a few sleepless nights, receiving phone calls from the medical team throughout the night, including one instance where they asked us to come in. It was an incredibly stressful time, and the uncertainty was overwhelming.

A Glimmer of Hope

By Friday, some of the test results started coming back. The only positive result was for Rhinovirus—a common cold. It turns out Benjamin just had an extreme reaction to it. Once that was determined, we began to see small improvements.

The ventilator was removed, and this morning, we were relieved to find him on low-flow breathing support—a significant step forward. His feeds are gradually being increased via the nose tube (currently 5ml every six hours), and we’re hopeful he’ll be able to try oral feeds again in the next couple of days.

Looking Forward

Today, Rachel and Mike are visiting with Esme, and for the first time in days, it feels like we can relax a little. We’re back to patiently waiting for Benjamin to get stronger and trusting the process.