The Story Of Our Little Warrior Neil Saiesh

This is my personal favourite chapter.

When I started writing this story, I was secretly waiting to reach this part.

Because this chapter…

was bliss.

Were there challenges?

Oh, hundreds.

Maybe more.

But this was the phase where we got the best of Neil.

The happiest version of him.
The cutest version of him.
The most magical version of him.

And the memories from this phase…

are enough for a lifetime.

It was the beginning of March 2025.

Neil had just finished his fifth surgery and had come home with a G-tube – a Mic-Key button. The surgery had relieved the stricture near the pylorus, and the hope was simple now.

He should start pooping again.

Yes, there would still be anal excoriation because of the acidic bile output. But pooping meant things were moving. It meant the intestine was functioning.

Compared to everything else we had seen…

this felt manageable.

So naturally, we were eagerly waiting for poop.

And Neil?

Oh, my Neil.

He was growing.

Finally moving his hands and legs with more strength. Smiling more. Making sounds louder than before. Becoming cuter every single day.

We were now waiting for one number.

7 kilograms.

That was the weight we were aiming for before transplant.

Our lives had become so different that weight was no longer measured in “healthy” or “unhealthy.”

It was measured in possibilities.

I consciously want to remember this phase in two parts.

The first – the beauty.
The joy.
The glory of Neil during these months.

And the second – the challenges he silently endured while still continuing to smile through all of it.

Because if there is one thing Neil taught us, it is this:

Strength does not always look loud.

Sometimes…

it looks like a smiling baby connected to wires.

March to June 2025.

The happiest part of our journey.

Neil had a routine now.

He would never sleep quickly at night. He would take his own sweet time. And he was the lightest sleeper ever.

The slightest sound and his eyes would open immediately, followed by tiny crying noises demanding attention.

Attention seeker.

That’s exactly what he was.

And honestly?

We loved every second of it.

By now, he had started taking baths almost every day. He had started recognising people, sensations, touch. He would respond when spoken to. He had begun trying to hold his neck.

He was still connected full-time to TPN. Wires were always around him. Yet he would still try moving around as much as he could.

Every day, his weight became our result day.

We would weigh him hoping for a miracle in grams.

Some days:

• 100 grams up
• some days 70 grams down

We were nowhere close to thinking in kilograms yet.

Our world existed in grams.

March 2025.

Despite just returning from surgery, Neil became super active very quickly.

We celebrated Holi with him. Made little hand and footprint paintings with colours. Dressed him in a cute onesie.

And by then, Neil had learnt something very important.

How to pose.

The moment he saw a phone camera, he would start making more sounds, more expressions, more movements… and eventually cry dramatically at the end.

As I write this now, I feel overwhelmed all over again.

Because Neil was finally becoming…

a normal growing baby.

Yes, with a hundred challenges.

But somehow, all of it disappeared with one smile.

One squeaky little sound from him… and the entire world felt okay again.

Neil had started losing hair because of long-term TPN nutrition.

One of the side effects of not having normal oral nutrition.

Of course, we panicked.

And of course, we called Dr. Dinesh like it was the biggest crisis in the world.

And like always, he would calmly put us back in place.

“Not something to worry about.”

And we would go right back to enjoying Neil.

One of my favourite things was watching him sleep.

He would hug a blanket or a teddy bear and sleep curled to one side so peacefully.

I miss this.

God, I miss this.

Sometimes I would just lie down next to him with my hand resting on him while he slept.

And I would simply admire him.

That feeling…

there are no words for it.

April 2025.

Tamil New Year.

We dressed him up beautifully.

Neil was nearing 5 kilograms, and somehow reaching 5 felt like reaching 50.

It felt huge.

Like years of achievement packed into one number.

But every gram had been worth it.

By now, Neil had started playing peek-a-boo.

Not just responding to it.

Initiating it.

He would take the towel himself, cover his face, and then wait for us to react.

He had also started biting his hands constantly.

Chewing on them.

Exploring everything.

He had started playing with toys. With balls. With sensations.

Watching him do ordinary baby things felt extraordinary to us.

And then came 25th April 2025.

Our anniversary.

The first anniversary we got to celebrate with Neil.

That happiness itself felt unreal.

We remember thanking God that we were not rushing to a hospital emergency that day.

That itself had become a blessing.

That’s Neil with his favourite Ladddoo Uncle (Benjamin Anna)

Neil loved his Laddoo Uncle.. In all sense..

And that’s Neiloo with his next favourite Sakthi-Man….

Benjamin Anna and Sakthi-Man! They were his guardian angels – in all sense

That’s Neiloo with his another favourite Mama – Krishna.. His Krishna mama who would visit him often and keep grabbing kisses from him and showering him with kisses..

May 2025.

By now, Neil had started recognising people very clearly.

Especially my mother.

His Baanuma.

Oh, the joy he had when he saw her. He celebrated his Banuma’s anniversary on May 1^st with all the smiles and joy….

He would jump in excitement. Stretch his hands toward her. Demand to be picked up.

And she would happily give him every bit of attention he deserved.

Playing with him. Hugging him. Carrying him endlessly.

Their bond was beautiful.

Something I will treasure forever.

We slowly started taking him out for little walks.

Typically after bath time, we would disconnect him for about 3–4 hours.

Benjamin Anna would reconnect him again in the evening.

Those few disconnected hours felt like freedom.

So we slowly became brave.

First temple.

Then church.

And then one day…

we took him to a mall.

A simple outing for most people.

A miracle for us.

And the funniest part?

He slept through most of it.

But we did not care.

Because we had once believed moments like this would never happen for us.

And yet…

they were happening.

His voice was magic.

If you heard his voice, you would instantly fall in love with him.

Neil started meeting his uncles – Recognising them now..

And amidst all this happiness…

there were still battles quietly happening.

1)

When Neil came home after surgery in March, one part of his abdominal wound had opened slightly.

Initially, Benjamin Anna tried managing it conservatively. Tight dressings. Careful wound support. Hoping the skin would close again naturally.

But after 4–5 days, we realised it had opened more.

A stitch opening sounds small when spoken aloud.

But imagine a surgical wound opening on your own body.

The pain.

The burning.

The discomfort.

Now imagine that on a tiny baby who had already undergone multiple surgeries.

And yet…

Neil smiled.

He would cry during dressing changes. Cry in pain.

And moments later?

Back to smiling. Throwing his hands and legs around. Demanding attention.

Around this time, we came across something almost magical.

Placental powder.

Human placenta has remarkable healing properties, and Dr. Dinesh and Dr. Anil suggested trying placental powder on the wound.

It helps tissue regeneration.

And honestly?

We saw magic happen.

Within about two weeks of careful application, the tissue slowly began healing. Skin started covering the opening again.

Those two weeks were extremely delicate.

An open wound meant high infection risk. We handled him with immense care.

But he recovered.

Like he always did.

2)

Neil underwent blood tests every week.

By now, we understood most of his blood work ourselves.

His liver function tests had always remained elevated because of long-term TPN.

Since nutrition was bypassing the normal digestive route, the liver was under continuous stress. Bile flow and liver metabolism were constantly affected.

At one point, Dr. Dinesh had to manage his TPN very closely because we could not risk permanent liver damage.

High-calorie TPNs containing lipids helped him gain weight faster.

But they also worsened the liver function.

So every decision became a trade-off.

More calories and better weight gain?
Or protecting the liver long term?

Trust me, all of this sounds incredibly alien.

But when you live inside it every day, these terms stop sounding medical.

They become your language.

And these decisions…

were never easy.

3)

He wasn’t pooping still..We had expected it to. But, it did not…

Instead, the contents would drain through his Mic-Key tube. And because there was continuous drainage, there was no major abdominal distension, no dangerous bloating, and most importantly, no persistent vomiting like before.

Yes, there was anxiety.

Every parent waits for something as basic as their child pooping without ever imagining it could become such a significant milestone.

But the doctors were clear and reassuring about it.

As long as there was output draining and the abdomen remained soft and stable, there was no immediate concern. The larger plan was to avoid repeatedly opening his abdomen now and instead assess everything properly during the transplant surgery itself, to then understand what exactly was still blocking the passage internally.

So we learnt, once again, to live with uncertainty.

And slowly, even this became part of our normal.

4)

Around April–May 2025, Neil developed a severe skin infection.

By then, we had started consulting Dr. Shyamala from Apollo Children’s Hospital for his vaccinations and general paediatric care.

The first time we narrated Neil’s story to her, she looked at him and said:

“This is a brave boy. I hope God gives him a beautiful future.”

The infection worsened quickly.

Rashes developed around his eyes, nose, and mouth. His skin started peeling.

Some mornings, his eyes would be completely stuck shut.

We would carefully use warm water to slowly open them.

Watching him like that…

was heartbreaking.

And still…

he smiled.

Played.

Made sounds.

Responded.

Finally, Dr. Shyamala identified the issue.

A deficiency of Vitamin K / Biotin.

Something that was not adequately present in his TPN composition or supplements.

He was receiving multivitamins.

But this specific deficiency had been missed.

Immediately, the supplement was added.

And within about fifteen days…

we started seeing recovery.

The rashes reduced.

The skin healed.

His face became normal again.

And through all of it…

my little boy smiled through the pain like a warrior.

——

I have countless photos and videos from March to May 2025.

Those memories are painfully alive.

Every time I look at them, something inside me breaks all over again.

He was so beautiful.

So perfect.

So magical.

His eyes…

God, his eyes were gorgeous.

I cannot explain his cuteness.

He was our cutie pie.

Our chakkareee.

P.S. – I would happily give all the credit of RCB winning the title to my little Neilooo.!!

But Neiloo knew, I was not gonna leave him not making a CSK fan!!!!

The happiness.
The challenges.
The ordinary moments that felt extraordinary.

It was our journey.

And we were finally moving forward.

Closer toward transplant.

Closer toward the next phase.

Waiting for Neil to become 7 kilograms.

Waiting for the future we had imagined for him.

Until June arrived.

June came with its own share of happiness and heartbreak.

The beautiful part was that my sister was coming down to India with my 7-year-old nephew. He had been waiting so long to meet Neiloo, and finally, that little dream was about to come true.

We were looking forward to those moments. Family. Laughter. More memories with Neil.

And somewhere in the middle of all that excitement…

we did not know that the slightest turbulence ahead
would lead to a hospitalisation that would last nearly three weeks.