A baby’s first Christmas is special for any parents.
But today will be a particularly memorable occasion for Johnny and Josephina Li, both 29, from Sydney’s west.
Their beloved baby Julian will finally be home with them after spending an incredible 197 days in hospital.
He was born prematurely at 32 weeks and almost died as he battled a rare and serious problem with his intestine.
Until this month, Julian had never left The Children’s Hospital at Westmead.
Today, the family will finally let the stress of the last few months go and simply enjoy being parents at their Guilford West home after the sleepless nights at Julian’s hospital bedside.
“We can’t wait just to have a barbecue and have our family around,” Mrs Li told 9news.com.au.
“We lost so much time with our family, so we’d like to catch up.”
Born premature weighing less than a bag of sugar
Mrs Li thought the couple were well prepared for the birth of their baby, with the due date July 15 marked in the calendar.
It was a smooth pregnancy until Mrs Li felt unwell and went to Westmead Hospital for a check-up on May 24.
She thought everything would be fine and she’d soon be on her way to work.
Then she went into labour.
“There was some sort of bleeding – they don’t know exactly what the cause was,” she said.
Julian was born weighing just 2.2kg, less than a bag of sugar.
The newborn was taken straight to intensive care as he needed help breathing.
The doting parents were told he’d likely be home in a week.
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Three days later, they received a call from doctors.
Julian had bile in his vomit, a fluid made in the liver that aids in digestion.
”We had no clue what that meant as first-time parents,” Mrs Li said.
“We were like, ‘oh it’s just vomit’.”
But the reality was far more serious.
Julian also had not yet passed his meconium, a newborn’s first poo.
Three weeks later, he still hadn’t and his body went septic.
Now, the parents were facing a confronting reality; their first child’s life was in danger.
“They ushered us out of the room, he was pretty much about to pass away,” Mr Li said.
“He was absolutely yellow, his eyes were yellow. He was very, very sick.
“He needed surgery to save his life.
“We thought that was it, we prepared for the worst.”
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Julian was given antibiotics and rushed to surgery to have an intubation tube inserted.
His body was not removing waste so he was given a stoma.
It saved his life, but the couple didn’t see him get much better.
Through all this time, they stayed at the hospital, sleeping at Julian’s bedside.
They have praised the staff at Westmead for their continued support, but admitted it was hard to see other infants getting better and going home.
Mr Li said it felt like there was “no hope”.
“Every baby in the nursery was going home one by one, we were just there,” he said.
After an eight-hour surgery on his bowel in August, Julian finally started to improve.
The Sydney parents were told he had a rare and severe problem with his intestine, and would also have to be fed through a tube.
Dr Juliana Puppi, paediatric gastroenterologist at The Children’s Hospital at Westmead, said this means Julian’s intestinal nerve or muscles prevent the intestines from contracting normally to move food, fluid and air through the gastrointestinal tract.
“For Julian, this meant he was unable to absorb the nutrients from his feeds, so his nutrition and growth were supported with parenteral nutrition, which supplies nutrients directly into the veins through a catheter,” Dr Puppi said.
The cause is still not known.
Parents ‘biggest gift’ is finally seeing baby Julian happy
Julian was well enough to go home earlier this month.
However, he still needs to be fed with intravenous fluid through a tube for 19 hours a day until he gets bigger.
Mr Li, who has stepped down from his high-level job to be around for his son, admitted they had mixed emotions about leaving the safety of the hospital.
“One part of us wanted him home ASAP,” Mr Li said.
“Another part of us is also somewhat scared because we have to manage all his care.
“His life is in our hands.”
Mrs Li said Julian is a “very smiley” baby who loves people and is already defying expectations, including eating solids.
“Seeing him happy gives us indication he’s feeling well,” she said.
It’s hoped Julian’s health will continue to improve, and eventually, he’ll be able to have his stoma reversed and be weaned off the artificial food.
He already weighs 7.85kg.
The beaming parents have already bought Julian an early gift for his special first Christmas, a toy car.
Julian hit the seven-month milestone last night, on Christmas Eve.
“That’s the biggest gift to us, having him home,” Mr Li said.
Westmead doctors were also thrilled to see him leave.
“Given the rarity of Julian’s condition, we weren’t sure when he’d would be ready or able to go home so it was just wonderful to be able to share the news with Julian’s family that after spending over six months in the hospital, they would be able to take him home for Christmas,” Dr Puppi said.
