A heartbroken mum said she longs for the day she can bring her baby daughter home.
Baby Matilda Bowcock has spent every day of her life in hospital under the specialist care of doctors. She was born via planned caesarean and was transferred to Alder Hey Children's Hospital just 30 minutes after she was born on November 18.
Mum Loren couldn't even cuddle her for five days. The 28-year-old still has no idea when she can bring her baby daughter home to live with older brother Harley, 11, and sister Mya, seven.
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Loren, from Bolton, said: "It's just like I'm not her mum. It's like something you see on the TV."
The mum was told at her 20 week scan that Matilda had a heart condition known as transposition of the great arteries. It means the two main blood vessels leaving the heart - the pulmonary artery and the aorta - are swapped over.
She had a septostomy, a life-saving procedure that widens or creates a hole in your baby's heart, when she was just a couple of hours old and has had over 14 operations included open heart surgery when she was just 12 days old.
Loren added: "You never go for the 20 week scan and think there is going to be something wrong. People don't realise that others have to live these lives until you're living it."
In January, Matilda had a cardiac arrest where her heart stopped beating for seven minutes, which Loren said felt like she had "lost her".
She said: "My life just felt like it was over. I just felt like I had lost her. There's been a lot of times where I've just broken down and thought that she's given up.
"She has got a good fight in her though, she really has."
Loren has only been able to start picking Matilda up on her own in the last two weeks, which she said made her feel like she's 'not her mum.'
She said: "When she had her chest drains in from her open heart surgery, she had them in constantly until two weeks ago. It's only been the last two weeks that I've been able to pick her up by herself.
"Every other time I've held her, she's had to be passed to me by a nurse."
Loren's two other children were unable to meet their sister until Christmas Eve because of how poorly she is.
She said: "Mya is seven and thinks Matilda has a poorly heart and they think it's broken and that she was born poorly. They knew I had to be away for a while but obviously it's gone on for a hell of a lot longer.
"They didn't meet her until Christmas Eve and it's hard to describe just how hard it is because my life is in turmoil. It's like I'm living two lives.
"I want to be at home with my other children and I want to be at the hospital so I can't win because wherever I am, I feel like I'm letting someone down."
Loren, a care assistant, has no idea when Matilda will be able to go home and has been told to instead "take every day as it comes".
She said: "There's been a few times we've thought she was getting there but Matilda has other ideas. I spoke to her consultant on Monday and he said I need to take things month by month because we're here for the long haul because she's really poorly.
"She is stable but she's a sick child. She just needs to get a lot bigger, a lot stronger and take every day as it comes."
Loren's family and friends have set up a GoFundMe page to help support her financially and help her pay the transport costs from her home to the hospital.
To donate to the fundraising page, please click here.
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