“Our family is complete”: Parents of baby Ni Ni, who spent 417 days in the hospital, celebrate her first CNY at home
by Christine Leow // January 20, 2023, 1:42 am
The Chuas – Astral, Veroy and their daughters Scarlet and Sheyln, or Nini – together at home for the very first time this Chinese New Year. From the time she was born in February 2021 till March 2022, Nini was living in the hospital because she had been born severely premature. All photos courtesy of Veroy Chua.
This Chinese News Year, the Chuas will be having dinner with their extended family. It may seem a modest plan to most but it is a momentous one for them.
It will be the first Chinese New Year they will be celebrating with their younger daughter Shelyn, or Nini as they like to call her, at home.
“All this would not have happened without Him.”
Until last March when she was already over a year old, Nini had lived in the hospital.
“Last Chinese New Year, we couldn’t even be with her because we caught Covid on the first day. We were very upset because it was also Nini’s birthday. She was in the hospital and spent her birthday alone,” said daddy Veroy, 37.
Added mummy Astral Lim, 42: “This year, I feel complete. A family should always be together.
“I’m very grateful to God. All this would not have happened without Him.”
Nini was born at just 25 weeks and three days. A baby needs 39 weeks of gestation to be considered full-term.
Nini was so premature, she was a “micro premie”, a term reserved for babies born before 26 weeks or weighing less than 750g at birth.
She weighed 750g on the dot. Such babies have a 75% chance of survival. Doctors gave Nini 50%.
A real fighter
Yet at every turn, Nini beat the odds.
“Every time the doctor says it is not going to happen, God showed it could happen.”
At birth, she was in danger of brain bleeds. She did not experience any.
The steroids she needed to strengthen her underdeveloped lungs could also affect her brain’s development. But she suffered no side effects.
Too tiny to breathe on her own, she had to be intubated (a tube was inserted through her mouth into her airway). She could not swallow. Medication had to be delivered through a catheter from her wrist to the veins near her heart.
Each of the procedures that were meant to save her life also put her at risk of losing it. She survived them all.
Said Astral of her daughter: “She is really a fighter.”
Nini developed conditions common to premature babies that affected her lungs, heart and eyes.
After some 200 days, she developed pneumonia. Yet through it all, she continued to grow and develop.
Veroy added: “Nini has always been a miracle child. Every time the doctor says it is not going to happen, God showed it could happen.”
Nini would spend a record 417 days at KKH Women’s and Children’s Hospital.
Every breath she takes
Nearly 10 months since her discharge, caring for Nini at home has been nothing short of a massive, co-ordinated operation.
Nini still cannot breathe independently, so she is hooked up to a ventilator via a tube inserted into her trachea or windpipe through an opening near her throat.
“I told her, Bi, we have come a long way from being so panicky and so fearful. This has bonded the three of us.”
The setup also includes an oxygen concentrator that filters out the nitrogen in the air, allowing her to breathe in more oxygen.
A pulse oximeter monitors her breathing and oxygen intake, as well as her heart rate.
Because Nini breathes through a trach tube, she needs a dehumidifier to warm and moisten the air, otherwise the dry air may make her cough and harden her mucus.
The Chuas have learnt to be hyper vigilant. They watch Nini at all times and sleep with her to the lullaby of her various machines, always ready to perform an emergency trach change should her trach tube get dislodged.
Even if the trach tube does not fall out by accident, it has to be changed weekly.
It takes three people to execute the procedure. Every Monday evening, Veroy, who runs a real estate business with Astral, makes sure he is home early for that.
Said Astral: “Nini is very, very cooperative. She will lie down very still which makes the whole procedure easier. It takes a lot of cooperation between me, Veroy and Nini. If Veroy and I are not on good terms with each other, we cannot do this.”
Veroy agreed: “I told her, Bi, we have come a long way from being so panicky and so fearful. Now, we only need to look at each other and we know. It has bonded the three of us.”
It had not always been this easy. When the Chuas were learning to do the trach tube change at the hospital, Astral found it “very traumatising”.
“They had to clear us for this procedure before we could come home because it is a weekly change,” said Veroy.
“Astral was really affected by the trach change because when you take out the tube, you can see the hole in Nini’s neck. The first time they taught us how to do it, Astral broke down. She couldn’t do it.”
God with us
Nini had not always been this calm when she has to go through medical procedures. What has helped has been a Christian song that she loves – 能不能一生爱你.
The story of how the Chuas chanced upon the song is yet another miracle.
Recounted Astral: “I was having a difficult moment at the hospital. I was very upset about Nini and my Spotify app was on when the song just started playing on my handphone.
“It’s a mum’s gut feeling that your kid can do better than this.”
“I don’t even know how or why. We usually listen to English praise and worship songs. This was a Chinese song.”
The song, which speaks of a great desire to be in the presence of God and to love Him forever, comforted Astral so much that she played it to Nini. They soon realised the song calmed her.
In his Instagram post, Veroy added: “It has become Nini’s lullaby anthem. This calms and lulls her to sleep. And when we sing this to her especially when the night is all quiet, we feel God is with us.”
Even simple tasks are a struggle
Because Nini cannot do anything or go anywhere without all the equipment that helps her breathe, simple tasks can get complicated.
Bath time is a two-man job because Nini cannot stand on her own and requires help to be propped up even when placed in a tub.
Her trach tube has to be kept dry. So soaping and rinsing her off and shampooing her hair have to be done with great care. What should take 10 minutes takes Astral and their domestic helper half an hour.
Meals were a big challenge until recently. All her life, Nini had been fed via a tube. She had never tasted anything, not even water, and had no interest in eating.
“She was scared of eating. It took us one-and-a-half hours to syringe-feed her 30ml of water.”
“She is oral adverse due to all the things that she went through in the hospital when several nurses had to pin her down and put things into her nose and mouth to help her. As a result, she developed PTSD (post-traumatic stress disorder). You cannot go near her face or put things near her mouth,” said Astral.
But the Chuas were determined to wean her off NGT (nasogastric tube) feeding.
“As parents we see her; it’s a mum’s gut feeling that your kid can do better than this,” said Astral of her decision.
They engaged a speech therapist to teach them what to do, which included introducing skin contact and getting her used to being touched.
“At the start, it was very difficult. She was scared of eating. She didn’t know what it was like to be hungry. Everything we put in her mouth, she would push away. It would take us one-and-a-half hours just to syringe-feed her 30ml of water.
“Swallowing was also difficult for her and not a very pleasant sensation because of the trach tube.
“I cried a lot of time over feeding her because feeding requires her to be willing. It’s not something you can force,” said Astral.
After nine months, Nini has become more receptive to eating.
She now accepts pureed food. Her appetite remains small, which is why she is now 8.5kg compared to the 9kg when she discharged. But every mouthful is a triumph.
Lonely but never alone
In the middle of the interview, Salt&Light asked Astral how she has been doing. The couple laughed nervously.
“When people ask me, I feel like crying. It’s not easy to go through this journey as a mum,” said Astral, choking back tears.
As her primary caregiver, Astral has had to “cut off all my social life”.
“I’m tired and there is always this fear. Caregiving is a very lonely journey.”
It is made all the more lonely because Nini cannot go out of the house without taking all the equipment with her. As her primary caregiver, Astral has had to “cut off all my social life”.
There are rare times when she does go out without Nini, “just to remind myself I’m still Astral and not just mummy of Nini”.
“It’s easy to lose your identity when caring for kids. People always ask about her and not about you.”
Their older daughter, Scarlet, who is four, has also had to sacrifice her social life. They had to pull her out of pre-school because she kept falling ill from being exposed to other children and the Chuas were afraid that Nini would fall ill, too.
Instead, they hired tutors to homeschool her.
Despite the challenges, the couple maintained that raising Nini has brought them closer to God.
“One day, I just let God take over. I know that if she is not meant to be with us, it is okay because she is with God.”
“My relationship with God is now deeper. I’ve never been to Bible school or anything like that. So I go to God like a child talking to her father. I call him ‘Papi Jesus’ and I speak to Him about everything, even small things.
“I’ve questioned Him, ‘If you really love me, why do I have to go through this? Why our kid?’ He doesn’t say why but He shows me He is always present.”
Though the fear of losing Nini is real, Astral has made peace with God about it.
“One day, I just let God take over. I know that if she is not meant to be with us, it is okay because she is with God. That allowed me to let go and let God take over. It has helped me a lot. It has helped us a lot.”
Raising a child with medical challenges has given Astral a compassion for hurting children as well.
“In the beginning, every day was like there was fear. But then you see that God has been faithful. So despite the fear, I can trust.”
Said Veroy: “When I first met Astral, I knew she loves kids a lot. But now she has this burden for them. When she reads about other kids, she will cry. And she will tell me, ‘I just donated to this and to that.’”
Veroy, who was once a full-time worker in his church, has also experienced God in a whole new way.
“In the beginning, every day was like there was fear. But when you look back on the day and many, many days after, you see that God has been faithful. So despite the fear, I can trust.
“Now after over 400 days in the hospital and nearly one year at home with Nini, we are at the stage in our faith where we can totally trust Him.
“We see Nini and she is like our faith in life form – not perfect, but fights very hard.”
Two are better than one
God has also used their trials to strengthen their marriage. In their time at the hospital with Nini, Astral has seen how a sick child can tear a marriage apart.
“This is one of the toughest things that can tear us apart or we can support each other.”
Husbands have been known to leave the caregiving to their wives. Others have blamed their partners. Veroy has only been more steadfast.
Said Astral: “God has brought us together. Without God, we would not have come this far. God allowed this to happen but I can see the good in it.
“By putting Nini into our lives, we got to see how deep our love for each other runs. We are in this together. We are so deeply connected, he can feel it when I am not doing well. I always tell him, ‘Thank you for loving me so much.’
“He is very hands-on, very patient, gentle and nurturing.
“During the most difficult journey in the beginning, when I was crying and crying, and depression and PTSD hit me, he was always present. He guards my heart and soul and gave me a lot of support morally.
“I would never be able to rise above these trials without him always by my side.”
Added Veroy: “We are very thankful for each other. We always tell each other, ‘This is one of the toughest things that can tear us apart or we can support each other.’ I’m thankful, very thankful for her. It’s very tough for her.”
In God’s Hands
Nini is now able to sit up and crawl on her own, no small feat for a toddler who had, until 11 months ago, had spent all her time in a hospital bed, unable to move.
She can also make sounds to get attention or indicate her needs.
Her favourite toys are the medical supplies she uses and her best friend is her Jie Jie (older sister). Instead of watching cartoons, she watches Chinese praise and worship videos and listens to worship songs.
“Let Nini be a light to show that nothing is impossible with God.”
“She is very feisty, very playful, very curious,” said Astral. “She is also very clever and sensible. When we change her trach tube, she knows to stay very still. She’s like an angel when she does that. We didn’t teach her to be so quiet. She just knew.”
For now, the Chuas do not know when Nini can be taken off the ventilator or catch up with her peers in terms of development milestones. But they remain resolute.
Said Veroy: “When she was born, every step of the hurdle and challenge, Man said it was impossible. But today we have seen Nini scale everything. The impossible has become possible because with God, all things are possible (Matthew 19:26) and Nini’s life is proof of that.
“Ever since she has come home with us, it feels like everything in the past is the past and we just focus on the future.
“I told God, ‘It is up to You to deliver her. Let Nini be a light to show that nothing is impossible with God.’”
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