Baby Nini has a shock of black hair that defies gravity when not combed into submission. Her large eyes, which her mum calls “deer eyes”, are round with curiosity and she has the chubbiest of cheeks.

Now over nine months old, she weighs in at 7kg. It may not seem like much, but considering her birth weight was a mere 750g or the equivalent of five peaches, this is a major cause for celebration.

Born this February 6 at 25 weeks and three days, Shelyn Chua Yun Ni is what doctors call a micro premie, a term for a baby born before 26 weeks of gestation or lighter than 750g.

But daddy Veroy Chua and mummy Astral Lim call her something else. She is their “little fighter” because Nini has beaten several medical odds to be where she is today.

Much too soon

The pregnancy began without incident and Astral, 41, expected nothing less. Her first pregnancy had gone very smoothly. Her elder daughter Scarlet was six days past her due date and had to be induced twice.

But this time round, at Week 20 of what should have been a 40-week pregnancy, Astral started spotting and experiencing contractions. She was diagnosed with placenta previa, a condition in which the placenta lies very low in the uterus and covers part, or all, of the cervix.

Astral Lim had a normal pregnancy until Week 20 when she began spotting and experiencing contractions, and was put on bed rest.

Bed rest was ordered. Although she was expected to carry the baby to full-term, the bleeding and contractions did not stop.

“I remember crying on many nights, praying to God to protect me and the baby. There was fear inside me and I didn’t know how to manage that fear.”

Then, at Week 25, Astral started having “very bad contractions in the middle of the night that lasted two hours”.

“I was scared because the pain didn’t subside. I had never had such bad contractions before.”

A visit to her gynaecologist revealed a possible infection near her placenta and she was hospitalised for observation and treatment – steroids to strengthen the baby and antibiotics to fight the infection.

Despite that, her water bag broke that night.

“My whole heart stopped. I didn’t dare to move.”

Worse news was to come. Her gynaecologist told them that the baby had to be delivered that day and that she had only a 50% chance of survival.

“He said that even if she survived, it would be very difficult for the baby and for us.”

The Chuas were given two options – to terminate the pregnancy or to carry on knowing the risks.

“When the doctor talked about the so-called termination of the pregnancy, the baby kicked. She hadn’t kicked me the whole day but she kicked then.”

Recounted Veroy on his Instagram post: “We knew that our little fighter was telling us to not give up.”

“Why God? Why?”

Astral was transferred to the KK Women’s and Children’s Hospital (KKH) because the hospital is better equipped to handle premature babies.

The trip was a difficult one.

“They didn’t want the baby to come out yet so I had to hold the baby in. I kept praying to God. I told Him, ‘The baby is in Your hands.’”

At the hospital, their faith took hit after hit.

“There was a lot of conversation and commotion over me. The doctors kept saying they couldn’t find the heartbeat or they couldn’t scan the baby. They were very worried and I felt devastated.”

Added Veroy, 35: “There were a lot of doctors. For some, you could see (the concern on) their faces …

“I felt that kind of stress and hopelessness.”

By then, some seven hours had passed. Astral was in tremendous pain and running a fever because of the infection.

Said Veroy: “We played praise and worship songs on a loop because she was so afraid and we were in despair.

“I had to be zai (calm) for her but a large part of me was not sure if we were going to be fine.”

When his wife was wheeled into the operating theatre, Veroy wept.

Astral and Veroy with their elder daughter, Scarlet. Less than two months after this picture was taken, Astral would go into premature labour with her second child.

“I let my emotions totally take over. I asked God, ‘Why like that? Could we have done anything better?’ I was very afraid that I would lose Astral.

“Until today, we still ask, ‘Why God?’ We still cannot reconcile why because there wasn’t a proper medical reason.”

The caesarean section took three hours because Astral’s placenta had fragmented into many pieces in an effort to protect the baby from the infection and doctors had to painstakingly remove every piece.

The start of a faith journey

After the delivery, Nini was wheeled into the neonatal intensive care unit (NICU).

Said Veroy: “My first thought was fear. I was afraid to see her because I didn’t know what to expect.

“But when I saw her in the incubator with the blue light, instead of feeling fear, there was this hope, this strength. Seeing her in front of my eyes made the fight real. We had gone through so much and Nini had pulled through.”

Nini in the incubator the day she was born.

At a birth weight of 750g, Nini was fully formed, complete with the tiniest of fingers and toes.

But her skin was translucent and her eyes were under-developed and fused shut. What worried the doctors most were her lungs. Until they were properly developed, she would not be able to breathe on her own.

“The doctor told us the next three to five days were critical. So, we started living our journey like that … in days and in weeks.

“But the moment we started this journey, I knew it was going to be a faith journey. There was no other way to do this but by faith,” said Veroy.     

Meanwhile, Astral was recovering in the ward and did not get to see her baby till three days later.

“Veroy had shown me photos of her but the first time I saw her, I cried. I kept asking him, ‘Why is she so small?’

“I felt that I had failed her as a mummy. I kept asking myself, ‘What have I done wrong? What have I not done right? The guilt hits me so hard even till today.

Though fully formed at 26 weeks, Nini’s lungs in particular were under-developed.

Astral also felt robbed of her experience as a mother. Instead of nurturing her newborn and celebrating her milestones, she had to be part of difficult conversations and to constantly deal with the possibility of losing her baby.

“There was nothing I could do except cry and pray on my knees for God’s grace and mercy.

“I cried every day. I had PTSD (post-traumatic stress syndrome), depression, anxiety and fear that were part of a prematurity journey.”

Day 62, the first time Astral got to change Nini’s diapers.

Even on good days, little things could bring on the tears.

“I would suddenly bawl over the slightest trigger such as social media news, doctors’ updates or even daily senseless activities.

“I felt weak, suicidal and incapable of taking care of my firstborn or anyone else.”

Psalm 91 became her comfort, particularly Psalm 91:5 that promised protection against the “terror of the night”. The love and support of her family also helped “fill all voids in my heart”.

Only on Day 66 was Astral given the chance to cradle Nini in her arms.

Even as Astral dealt with the negativity within, the couple also had to fight the negativity around. Every doctor’s update brought the couple more sobering news.

Said Veroy: “During family conferences with the experts and specialists, they would always give us the harsh facts.

“We told them, ‘You are doctors on earth but we have a miracle Doctor and God is going to have the final say in this situation.’”

As they sought to believe in God for their baby’s healing, the couple told the doctors not to talk about Nini’s condition in her presence.

Said Astral: “I told them, ‘I’m a Christian and I want you to profess life over her. Don’t stand in front of my baby and profess death.”   

They printed Psalm 91 and pasted it over Nini’s incubator so that she would be surrounded by God’s Word. Every day, they would read the Psalm to her.

Said Veroy: “As we read, we visualised the Word made real in her life.”

They also played worship songs to her and prayed over her.

Added Veroy: “I sing her The Blessing. As we sing, we profess that she is going to have children and her children are going to have children. This has been our anthem for the season.”

Day 75 was the day Nini reached a milestone – she crossed the 2kg mark. It was also the first time Veroy got to hold his baby.

By now, all the staff at the hospital know the Chuas are Christians. Even the parents of other babies in the NICU are aware and some have even thanked them for playing worship songs to their babies.

Encouragement has come in other forms as well.

Through Veroy’s and Astral’s Instagram posts, strangers got to know about Nini. Many offered words of comfort and hope, shared encouraging life stories and told the Chuas that they would be praying and fasting for their baby. Some even sent gifts.

Said Astral: “Our page is flooded with prayers for Nini. We will sit there and read all the prayer to her.”

Added Veroy: “A lot of my guy friends say they have not been praying for a long time, but because of Nini, they have started praying.”

Friends sent sermons and songs to lift their spirits. Clients of the couple who are real estate agents asked after their baby.

Days of “small victories”, days of despair

Still, the days have been long and there have been medical challenges.

Right after Nini was born, there was the fear of bleeding especially in the brain.

When scans came back clear, the couple was faced with another challenge: Nini had to be prescribed various steroids to strengthen her lungs. These same medications could affect her brain development.

At just five days old, a peripherally inserted central catheter (PICC) line was inserted from her wrist to the veins near her heart for medications and nutrients to be delivered. Again, the procedure came with risks.

There were concerns that her heart might have an infection though scans showed everything was normal. But her lungs did indeed have an infection and, at one point, they collapsed.

Nini also developed a string of conditions common to premature babies – chronic lung disease (CLD), a long-term breathing problem; pulmonary hypertension; bronchomalacia; and retinopathy of prematurity (ROP), an eye disorder caused by abnormal blood vessel growth in the light-sensitive parts of the retina. 

After 202 days, there was another health scare. Astral received a call from the hospital saying that Nini was “not doing well”. She had developed pneumonia.

In the midst of these, though, there were also small victories, marked in the minutest of measures.

Nini at Day 53 weighing 1.54kg. Every progress, no matter how tiny, is marked and celebrated by the Chuas.

The number of grams Nini gains each day, the mere millilitres of milk she takes (newborns can down about 30ml per feed but just taking 0.1ml to 0.2ml for Nini was a triumph), the drop of even a few per cent in her dependency on oxygen, Nini’s curious gaze that hints at an inquisitive spirit – each was cause for the Chuas to “experience supercharged gratitude”.

And through it all, God gave them a faith they never knew they had.

Astral who says her faith was “never very hard-core”, learnt that “it’s okay to cry, it’s okay to feel weak, it’s okay to stumble at times”. She found herself leaning on God more than ever.

“I have spoken to God a lot. Every day I speak to him. No matter how small the issue, I hold a conversation with Him. I ask Him to lead me every single day.”

Veroy, who experienced days “filled with faith” and days when he was “really worn out” in equal measure, wrote in his Instagram post: “But one thing for sure is that God’s promises are never-changing.”

A major battle fought

The realisation that much of how things turn out are beyond their control and their resolve to “just let go and let God” have not gone unchallenged.

In July, the Chuas faced their biggest hurdle of all. They were told that Nini had to undergo a tracheostomy, a procedure to create an opening at the front of her neck so that a tube could be inserted into her windpipe to help her breathe.

Nini had been intubated (a tube inserted through the mouth into the airway) for six months, far longer than the advisable period of one month for preemies. Prolonged intubation would eventually cause damage to her trachea, vocal cord, voice box, lungs, vision and hearing and open her to infections.

“It would be life-threatening,” said Veroy.

A tracheostomy would reduce her dependency on the ventilator, increase her mobility and give her a fighting chance being able to go home.

But the surgery came with major risks as Nini was still totally dependent on oxygen.

Said Astral: “They put the option like this, ‘It could save your baby but it will have a lot of risks.

“No baby has ever attempted a tracheostomy on a 100% oxygen dependency in Singapore. If you do the surgery, you have to be prepared to let her go.’”

The prospect was too much for Astral to bear. She locked herself in the cubicle of a public toilet and wept.

“I asked God, ‘Where are you when I need You?’”

It was then that a song started to play on her handphone which was in her pocket.

“It was Waymaker. I had never heard of this song. I didn’t even have it on my playlist. I was stunned,” said Astral.

Said Veroy: “God was telling her, ‘I am here.’”

The couple decided to go ahead with the surgery.

On the day of the tracheostomy, their surgeon told them that it would be the first time he would be operating on a baby who was still 100% dependent on oxygen.

Before the surgery, the Chuas were told that Nini was considered “high risk” because she was 100% dependent on oxygen. The surgery went without a hitch and Veroy wrote in his Instagram post after that: “We know it can only be God.”

Said Veroy: “It was supposed to be a very fearful day but, as I was praying and fasting, I saw a vision of a lion circling the incubator and leading the way into the operating theatre.

“It was as if the Lion of Judah was going to accompany Nini into the operating theatre, fighting on her behalf.”

The surgery was a success, a first for a premature baby totally dependent on oxygen. So rare is her case that Nini is now part of KKH’s medical research study.

How long more, Lord?

Over 300 days in, the Chuas are unsure how many more days there are to go before Nini can go home.

Said Astral, tearing: “There’s a toddler at home and our baby is in the hospital. Sometimes, I feel guilty that we spend such a large amount of time in the hospital that I’m not able to spend time with Scarlet.

Not having their two children under the same roof has been challenging for the Chuas.

Yet, leaving their baby behind was “a torture”.

“We would often sneak out quietly, hoping that she doesn’t know. 

“Our hearts will be in two places till the day she comes back home.”

For Nini to be given the all-clear to go home, she has to hit a few milestones.

She needs to wean off oxygen, pass her speech therapy, transit from continuous tube feeding to bolus feeding, and undergo early mobilisation therapy to strengthen her core and neck muscles because she has been lying down since birth.

Said Veroy: “When it first happened, we asked, ‘When will she be discharged?’ The doctor told us it would be at least three months.

The Chuas with Nini on Day 284, marking World Prematurity Day (November 17).

“Now, it’s more than 300 days. We’ve been doing this daily – visiting her, being with her while juggling work, life and our older daughter.”  

“We look back and ask, ‘How did we get this far?’ It’s really day by day. When our faith is not there, somehow God comes. It really is a case of ‘Your mercies are new every morning’ (Lamentations 3:22-23).”

Added Astral: “God always gives us strength for the day. Tomorrow, we leave that for tonight’s prayers.”

Even if Nini returns home, the path ahead remains unclear.

Said Astral: “I will be the main caregiver and a medical mum. We will need to learn how to change her tracheostomy tube, monitor her ventilator, do resuscitation, do suctioning and everything.

“We cannot be away from her at all till decannulation, when she has her tracheotomy tube removed. We don’t know how long it would be or how challenging it would be.”

At 291 days old, Nini transited to a home ventilator, taking her one step closer to being able to go home. She has to clear some milestones before she can be discharged including moving to a high dependency ward and decreasing her oxygen requirements to an oxygen concentrator.

But the Chuas refuse to be shaken by present uncertainties.

Said Veroy: “God sees the beginning and the end. And if you read the Bible, you know God wins whatever happens.

“In God’s eyes, Nini is already healed. In God’s eyes, Nini has perfectly working lungs.

“People who are intubated for too long usually have a raspy voice. But I have a vision of her being able to sing well and leading many to sing of His praises.”

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