The Story Of Our Little Warrior Neil Saiesh

Neil came home.

That sentence still feels unreal to write.

Neil came home… with a Hickman line in place and an NG tube running through his tiny nose, a tube meant to protect him from aspirating if he vomited. It was not the kind of homecoming anyone imagines.

But it was ours.

Something we never thought would happen… had happened.

Yes, our room had turned into a mini hospital setup. Machines, monitors, medicines, sterile zones, everything was in place. But none of that mattered.

Because Neil was home.

By then, Neil was two months old, corrected age, just a few days. And slowly, we began to see him.

Not just as a baby fighting to survive. But as a baby… growing.

Neil was smiling. First in his sleep.

Then more consciously.

His eyes began to follow things. He started looking around, observing more, becoming aware. His face began to fill out.

He started looking less like that fragile newborn in the NICU… and more like our Neil.

And while all of this was happening, we had a completely new life to learn.

Learning a New Life: Home TPN

Home was no longer just home. It was a controlled space. A sterile environment.

Two sterliums were placed – one outside the room and one inside.

No one could touch Neil without washing their hands and applying sterlium.

The Hickman line had to be handled with absolute care.

There was no room for error.

The monitor stayed connected.

And our life became routine.

Morning vitals – blood pressure, heart rate, SPO₂, temperature, sugar.

Evening vitals.

Every reading was noted. Every change was observed. Everything was updated in Neil’s TPN group. And the moment something felt even slightly off… we called.

Most often, we called Benjamin Anna.

And every single time, no matter how small the doubt, he would patiently listen… and guide us.

We were learning.

Every single day.

We started reading about home TPN with the help of our now-official medical research partner – AI.

We wanted to understand everything.

Because this was no longer just medical care.

This was our responsibility.

And in the middle of all of this… we saw something beautiful.

Neil was growing.

The nutrition was working.

His weight started increasing.

Slowly.

Very slowly.

Gram by gram. Day by day.

And every gram felt like a victory.

One gesture that will stay with us forever, once Neil came home, Dr. Dinesh came home to see him. Not just to check on Neil, but to check everything. The setup. The system. The environment.

If he was in it… he was in it fully.

And that gave us strength.

Learning Through Mistakes

We learnt. But we also made mistakes.

There were times we let air enter the line.

Thankfully, before it reached further, we would stop the infusion pump immediately… panic… and call.

And within no time, help would reach.

There were times we saw blood backflow into the line.

We didn’t even understand what we had done wrong.

But again…

we called.

And every time… someone came.

And in that process, Neil met his next angel.

His Shakti-man.

One day, when we had let air into the line and called Benjamin Anna in panic, he sent someone. And that someone became Shakti-man to Neil.

Somehow, Benjamin brother and Shakti-man became his favourites.

Every time Benjamin brother came home for line management, he would look at Neil and call him with so much love, “Laddoooo paiyaan…”

Neil was tiny. But his eyes were big. He would observe everything.

And so, in our world, Benjamin Mama became Laddoo Uncle. Shakti Mama became Shakti-man.

These names stayed. Because these people stayed.

Our days became structured.

Vitals.

Line care.

Medicines.

Observation.

Constant awareness.

We could not miss anything. Not even the smallest sign.

Yes, we called Dr. Dinesh for the smallest things. And every time, he would calmly bring us back to reality.

“I would not worry about this. This is expected.”

Somehow, that word “expected” became comforting. Because it meant we were not failing. This was part of the process.

Despite everything, Neil adjusted.

His body responded to TPN. His weight improved. His social milestones surprised us.

He smiled more. He interacted more.

It started feeling… normal.

A new normal.

We always knew our normal would never be like others. But this normal had Neil. And his smile.

And that was enough.

27th November 2024 — His First Bath

This day meant more than it sounds.

Because we had never imagined it.

Even with the line, the tubes, everything… we were scared. What could we do? What could he handle?

And then we remembered Dr. Dinesh’s words.

“He can do everything a normal baby can do.”

So we prepared. Nervous. Careful.

But when Benjamin brother is there… you don’t fear as much.

He came. Stood with us. Guided us.

And just like that… Neil had his first bath.

It felt like a milestone we had never dared to dream of.

Neil began his little milestones. Every movement mattered. Every tiny action felt like an achievement.

If he moved his hand… it meant something.

If he reacted… it was a celebration.

Days passed. November moved into December.

We kept learning. Adjusting. Understanding what we needed to know… and what we didn’t.

Then came something that felt like progress. By now, his NG tube was removed…Or to say, he pulled it out..

Neil started pooping.

Not regular stool. But bilious output.

And that itself was a sign.

It meant the surgery connecting his intestine to the colon had worked.

And yes… he had the funniest pooping face.

And somehow… we enjoyed it.

Alongside this came excoriation.

His skin around the anal area turned red. It started peeling. He was in pain. Severe pain.

His scrotum became red. We searched for creams. Tried everything.

And yet… this little boy would smile.

A smile that could melt everything.

Neil’s favourite list

Soon, Neil found his favourite.

My mother.

His Baanuma.

He had his own bond with her. He would smile differently at her. Sleep peacefully with her.

And she loved him endlessly.

My father, who had always been scared of the medical world… slowly changed.

He held Neil.

For the first time.

And that moment… was everything.

Life slowly found rhythm.

There were blood tests every 10 days. But since blood could now be drawn from the line, the painful pricks reduced.

But one thing stayed.

Every single day.

A blood thinner injection.

To prevent clots in the line.

He cried every time.

And we felt that pain… every single day.

We celebrated his first Christmas.

Dressed him as a tiny Santa.

Then came New Year.

We dressed him again.

Moments we had only imagined… were finally happening.

And through all of this… Neil never stopped trying.

Despite the line. Despite everything.

He kept going.

The Team We Held On To

By now, we knew one thing clearly.

We were not letting go of Dr. Dinesh.

No matter what.

Even if he got frustrated with us.

Because we knew… he loved Neil. And he would do everything to give him the life he deserved.

The transplant surgeon, Dr. Anil Vaidya, was still in the US at that time, preparing to come to India to set up the intestinal rehabilitation program.

And then came the day we had to meet him.

It was 10th January 2025.

This meeting mattered.

Because it was about the future.

We met Dr. Anil along with Dr. Dinesh and the team. It was the first time we were meeting him, and by then Neil’s entire story was ingrained in me. I began narrating everything, every detail I wanted him to know.

Neil was in my arms while I spoke.

And somewhere in the middle of all that…

I noticed something.

While I was talking, Neil was busy with Dr. Dinesh.

Dr. Dinesh was playing with him, gently, naturally, and Neil was responding.

Smiling. Moving. Engaging in his own little way.

They were having their own conversation.

No words.
But full of expression.

Neil would react… and Dr. Dinesh would respond right back.

And in that moment… everything else faded.

Because what I was witnessing was not just a doctor seeing a patient.

It was a connection.

A comfort.

A bond.

And I remember feeling it so strongly…

maybe… Neil had found his person.

I know at this point, many of you reading this might wonder why I keep speaking so much about Dr. Dinesh.

But there are names in this story that will come up again and again. And his name the most..

Because these are not just doctors.

These are his angels. Dr. Dinesh was his angel..

The people who stood by him, built a system around him, and made sure he was never alone in this fight.

And no matter how much we speak about them…

it will always feel like we haven’t said enough.

Dr. Anil listened calmly. And in his calmest aura, said something that stayed with us.

He had seen children do well post transplant. And with everything Neil had gone through, and where he was now, he believed Neil would do well too.

That one statement gave us strength.

Post-transplant life had scared us deeply.

But this… gave us hope.

When we walked out that day, we felt something we hadn’t felt in a long time.

Clarity.

We came home believing…

things would be okay.

We didn’t know how.

But we believed.

The next part of this journey…

is best seen through pictures.

Because those moments…

were lived more than they can ever be written.

And with this you all would know – He was a poser… He exactly knew where the camera placement was and knew where to look at 😊

We did have a few hospital visits in between.

But nothing that turned into long stays.

It felt like we were moving forward.

But moments like these we cherished.. We were giving him the care he deserved and at home..

We could hold him, lift him, touch him… And he was growing up beautifully… Just like a perfect little one… For the first time, things felt it was returning to normal…

And then…

Neil started vomiting………Again…