The Story Of Our Little Warrior Neil Saiesh

NICU – A place that changes you. Inside out.

You walk in as a parent, but you don’t walk out the same person.

Because inside those walls, you see everything.

You see babies thriving.

You see babies not thriving.

And the hardest part is this, you never know which side you are on… until you are in it.

Since Neil was born two months premature (31+1 weeks), he was taken straight to the NICU after birth. His tiny organs needed support. Time. Care.

And so, our journey as parents began… not with holding him, but with watching him through glass.

I had a C-section birth. And I was told I could only see my baby the next morning (6^th September 2024).

Jerrin had already gone into the NICU. He had seen him. When he came back, he was happy. Excited. Almost glowing. He showed me videos of our little boy, tiny legs kicking, small hands moving, alive in ways that instantly filled the room with hope.

I watched those videos again and again.

But it wasn’t enough.

I wanted to see him.

I wanted to touch him.

I wanted to hold him.

I wanted that warmth.

I wanted to see what we had created.

But the wait felt endless.

They say a C-section is a major surgery. Your body needs rest. Time. Care.

But none of that mattered to me at that moment.

The physical pain… it was nothing compared to the anxiety. Everything else faded into the background. There was only one thing that mattered.

Getting to him.

The next morning, the doctor asked me to start walking. I didn’t hesitate. Every step hurt. But I took them anyway.

Because each step meant I was getting closer to him.

Closer to my baby.

Closer to my miracle.

Closer to my Neil.

Quick side story of his name – Neil Saiesh:

We named him Neil Saiesh.

That name carried more thought, more meaning, than we had ever imagined a name would.

We had a mix marriage (Hindu-Christian). And naming our baby was not just about choosing something that sounded right. It had to feel right. It had to belong to both of us. It had to honour both our faiths, without taking away from either.

We wanted something neutral.
Something meaningful.
Something that would stand beyond religion, and still hold both our beliefs within it.

And so came Neil – a champion.

And Saiesh – a coming together of Sai Baba and Eshu (Jesus Christ).
Two forms of faith that we both held on to, deeply and completely.

Maybe Neil was always God’s child.

And in every way that would unfold ahead…

he was an undefeated champion.

Coming back –

I entered the NICU.

The protocols. The hand wash. The sterile silence. Everything felt slow. Heavy.

And then…I saw him.

My tiny piece of joy. My wonder. My everything.

He was perfect. Perfect in ways I cannot even define. Perfectly formed. Perfectly moving. Perfectly crying.

He was beautiful.

I touched him.

And in that moment, it felt like a lifetime of joy rushed through me.

There are no words for that feeling. None that can truly hold it.

But alongside that joy… there was something else.

Something I was not prepared for.

He was covered in tubes. Connected to machines that made sounds I did not understand but could not ignore.

Monitors beeped constantly.

His heartbeat flashed across a screen.

There was oxygen support helping him breathe.

He had PICC lines running into his tiny body, carrying medicines meant to keep him safe.

His little toes…They had blood spots. Marks from where blood was being drawn, again and again, to check if everything was okay.

He was so small. And yet, he was already enduring so much.

And then came the reality check.

When your baby is born prematurely, you are not prepared for what your own body might not be ready for.

No one tells you that you may not lactate immediately.

No one prepares you for that gap.

There is so much information in the world. So much guidance for full-term pregnancies.

But here… there was silence.

We were told our baby needed feeds.

The hospital mentioned donor milk.

But it was not strongly insisted upon.
There was no pause to help us understand what it truly meant. No time to think. No guidance on how critical that choice could be.

And the reality we later discovered was even more difficult.

Donor breast milk through the Milk Banks are not easily accessible.

Milk banks, at least in Bangalore, are extremely unorganised.
They run on very limited stock.
Access is not immediate.
Priorities are set internally, and unless you push, insist, and follow up relentlessly, you may not even get a small quantity.

We didn’t know that then. We didn’t know we had to fight for it.

We didn’t know that even getting 50 ml could require effort, awareness, and urgency from our side.

And in that moment, when everything was happening so fast…

Formula was suggested.

Our baby needed to be fed. So we said yes.

At that point, we didn’t know what else to consider. We didn’t even know what questions to ask.

We were just parents trying to do the right thing.

Looking back, this is not about regret.

This is about awareness.

Because this is a reality that needs attention. No parent in that situation should be left uninformed or unprepared when it comes to something as critical as feeding their premature baby.

The days that followed became a routine we never imagined.

Morning visits to NICU.

Evening visits to NICU.

Standing beside his incubator.

Touching him softly.

Speaking to him gently.

And then leaving.

Leaving him there.

Leaving our piece of joy behind in that room with doctors, nurses, machines.

Walking away from your own child…That is something no parent prepares for. But we learned.

Day 5 of birth.

A day we never want to relive.

We were told three words.

*Necrotising Enterocolitis. NEC.*

Words that meant nothing to us at that moment.

Words that would come to mean everything.

NEC is a serious condition seen in premature babies, where the intestines become inflamed and can start getting damaged. In severe cases, parts of the intestine can even perforate. It can escalate rapidly and become life-threatening.

But at that moment, we didn’t know the depth of it.

Not yet.

Things escalated quickly. A paediatric surgeon was called in.

He walked in, looked at the X-ray, examined Neil, and then turned to us.

“The clinical condition and the X-ray are not matching. But the X-ray looks bad. The intestines may already be perforated. We need to stop feeds immediately. He can only be fed through IV.”

Our world stopped.

We didn’t understand everything he said. But we understood enough. Something was very wrong.

From that moment, everything changed. The NICU was no longer just overwhelming. It became terrifying.

From Day 7 to Day 12, our baby was NPO (Nil per Oral) – meaning he was not given any feeds and all the nutrition to him was provided through IV line placed on his tiny hands and feet.

Day 12 of birth.

By now, we had learned to fear the next update.

And this one confirmed it.

We were told his condition had deteriorated. There was fluid collecting in his abdomen. He needed immediate drain placement.

Which meant one thing for him…

More pipes.

More tubes.

More pricks.

We were not prepared for this.

We had imagined bringing him home.

Holding him.

Living life with him.

Instead, we were watching him fight for his life.

And somewhere in the middle of all this…

Guilt took over.

What did we do wrong?

Where did we go wrong?

Could we have done something differently?

These questions didn’t come once.

They stayed.

They grew.

They consumed.

The medical world spoke a language we were still trying to understand.

Every day, a new term.

Every day, a new update.

I remember the NICU rounds. Doctors would walk from baby to baby, smiling, reassuring other parents, sharing progress. And then they would come to us.

“Baby of Nisha… things look a little bad.”

That expression and the sentence stayed with us.

And then came another.

“He may need immediate ventilation.”

And just like that…

He was ventilated.

Machines began to breathe for him.

That night…

We sat outside the NICU.

The whole night.

Not knowing what to say.

Not knowing what to do.

Just crying. Just praying.

Because at that point, prayer was the only thing we had left.

That night changed us.

Until then, we were new parents trying to understand an unfamiliar world. But that night, we became something else.

Parents who understood that love is not always about holding your child close.

Sometimes, it is about standing outside a room, completely helpless, and still believing with everything you have that your child will make it through.

Neil was only days old.

And yet, he had already faced more than most do in a lifetime.

Machines were breathing for him.

Tubes surrounded him. Numbers defined his every moment.

But beyond all of that…There was something no machine could measure.

His will.

Because even in that tiny body, in that overwhelming silence of that night…He was still fighting.

And as long as he was fighting… we knew this story was far from over.