Feeding challenges are common in the NICU, especially for premature babies.

Often, the issue is explained as a lack of a coordinated sucking reflex that develops with time and maturity.

For Ophelia, it was more complicated than that.

She was premature, but she also had a brain injury. It was not simply about strength or endurance. Much of it came down to motor planning. Her body did not consistently know how to organize the movements required to safely feed.

Early on, she had no effective sucking reflex at all. But even then, there was something I noticed almost immediately: she would feed well with me, yet refuse or struggle significantly more with nurses.

She was determined, even then.

It was never completely absent ability. It was inconsistency. Effort. Timing. Comfort. Regulation.

Over time, she also developed oral dysphagia.

Oral dysphagia refers to difficulty coordinating the muscles needed to chew and swallow safely. In her case, I believe part of it was influenced by the intensity of feeding expectations in the NICU environment itself. Feeding was not simply nourishment. It was structured, timed, monitored, and constantly pushed because growth and intake mattered medically.

But for neurologically injured infants, feeding is not always straightforward.

Sometimes the body is still trying to figure out how to coordinate breathing, swallowing, sensory input, and movement all at once.

What ultimately helped Ophelia was not more pressure. It was less.

We shifted away from rigid expectations and toward exploration. I let her feed herself whenever possible. I stopped focusing so heavily on “how much” and paid more attention to engagement.

I gave her anything she was willing to taste, touch, or put into her mouth.

Oddly enough, the first thing that consistently worked was chocolate hummus.

Once I realized she liked it, I started putting it on everything. That became our starting point. Not a formal feeding plan. Not a perfectly structured therapy strategy. Just a small opening that helped feeding stop feeling like a battle.

At the time, she still had an NG tube in the NICU.

An NG tube, or nasogastric tube, runs through the nose into the stomach and is commonly used for temporary feeding support. I became very comfortable managing it. I knew how to check placement, pull back for stomach contents, and troubleshoot problems.

I wanted to bring her home with it.

I asked. Then I pushed. Then I begged.

But it was against hospital policy.

We were told directly that too many children had died from complications related to NG tubes for them to feel comfortable discharging her home with one.

At that point, the decision became painfully simple: continue fighting to stay in the NICU with the NG tube, or move forward with a G-tube placement and finally go home.

We had three other children at home who still had not met their sister.

She was no longer critical.

We wanted our family together.

So we made the difficult decision to place the G-tube.

A G-tube, or gastrostomy tube, is placed directly into the stomach through the abdomen. It allows nutrition, fluids, and medications to be given safely when oral feeding is unreliable or unsafe.

For us, it was never the ideal plan.

It was the pathway home.

Once we were discharged, feeding became something I tracked constantly. I kept detailed journals documenting every feeding, how much she took orally, how much went through the tube, and how long everything took. I tracked patterns obsessively because after time spent in the NICU, that level of monitoring felt normal.

Then one day, after reviewing everything, our pediatrician looked at me and said:

“We’re no longer in the NICU. I trust you are giving her what she needs.”

I have never forgotten that moment.

Not only had she had cared for Ophelia from birth she was also my pediatrician for the entirety of my childhood, and it felt like a quiet shift from constant oversight into trust.

Over time, feeding slowly improved.

Not perfectly or linearly. But steadily enough that after about eight months, shortly after transitioning to a Mickey button, we were able to remove the G-tube entirely.

Looking back, one of the hardest parts of feeding difficulties after HIE is that they do not always present dramatically. Sometimes it is not outright refusal. Sometimes it is inconsistency, exhaustion, long feeding times, coughing, gagging, or simply the feeling that something is not working the way it should.

Parents often recognize feeding dysfunction long before they have the clinical language for it.

You do not need perfect terminology to advocate for your child.

Feeding after HIE is rarely just about hunger. It involves coordination, endurance, regulation, sensory processing, and safety all at once. Decisions surrounding NG tubes, G-tubes, and feeding support are deeply emotional, but they are also practical decisions made inside very real circumstances.

Most of the time, they come down to one thing:

Getting your child home safely and helping them progress forward.

Resources & Further Reading:

• American Speech-Language-Hearing Association (ASHA) — Feeding and Swallowing Disorders in Children
• Nationwide Children’s Hospital — Percutaneous Gastrostomy (PEG) Tube Placement & Care