'It's an anxious time leaving the security of neonatal staff' - Natalie's story

Family photo in the neonatal unit

Natalie's daughter Anya was born at 26 weeks. She describes taking Anya home from the neonatal unit, only for them to return to hospital a year later.

Anya (26 weeker, 1040g) was discharged from Liverpool NICU in April 2018 on oxygen.

While pregnant with Anya, I was admitted to hospital with breathing difficulty. I was suffering with necrotising pneumonia which escalated to other difficulties including sepsis. I was quickly moved to the intensive care unit and induced into a coma. My organs were failing and my veins had failed, my family were informed I didn't have much time left so they needed to act fast in order to try to save me and the baby. Anya was delivered by an emergency C-section and my family faced the most traumatic time not knowing if either Anya or I would survive.

A couple of days later my ventilation was reduced and my partner Danny informed me we had a baby girl.

Anya NICU couple of days old

Anya faced ups and downs like any NICU journey but the fight she had is what helped me through. Slow and steady progress, she's our actual miracle. I finally got to meet Anya when she was 18 days old, which was so emotional. I had been discharged from hospital late the night before. I still carry some guilt for this now, but I had to get my strength up for when Anya was home.

Like all parents on a neonatal journey we were desperate to bring our baby girl home, although it was also an anxious time as you have to leave the security of having the neonatal staff behind.

Bringing Anya home on oxygen was initially very daunting, even though we had been well prepared by Liverpool NICU. Our home had been checked over by the hospital oxygen team and the fire service before the oxygen was installed. We had our list of dos and don’ts; it felt like a great deal to take in and looking back now you have so many unnecessary worries.

Within days you adjust to the new way of life with oxygen. The oxygen team were great and really helpful, from the nurses to the person delivering the oxygen, always on hand no matter what the query.

We learnt quickly not to let Anya being on oxygen hold us back from going out and about enjoying family time. It does seem like a big deal at first, but once you get the hang of the portable oxygen it becomes second nature. We even took Anya on a family camping trip a couple of months after being discharged whilst she was still on oxygen.

Anya had a little bout of bronchiolitis a couple of weeks after discharge but, with it being at the end of the bronchiolitis season, it was very mild and I feel it lured us into a false sense of what the severity of bronchiolitis can be like.

Anya continued to progress throughout the summer months and even came off her oxygen at the beginning of August 2018. We had been informed by medics the first couple of winters can be especially hard for premature babies.

Big brother Louis like to help look after Anya on the unit

It was during October half term that Anya had her first chest infection, along with an ear and throat infection and hand, foot and mouth. She was prescribed antibiotics and an inhaler. We were away from home on our first family getaway so had to arrange through NHS 111 for Anya to see a GP. The doctor informed us that if Anya did not improve within 48 hours, she would have to be admitted to the local hospital. We returned home a couple of days later, Anya was checked over by her oxygen team and given her monthly injection for the bronchiolitis program that she qualified for. The antibiotics had begun to work and she didn’t need to be admitted.

We celebrated Anya's first birthday, a couple of days later she was admitted to hospital with bronchiolitis were she stayed for 11 days. This was so tough.

After the NICU journey earlier the previous year we truly did not expect our baby girl to be suffering so much again.

From seeing how much Anya had progressed throughout 2018, pulling herself up against furniture and crawling round so fast, to laying helplessly in a hospital bed unable to lift her head was absolutely heart-breaking. The noise of the machines and the smell of the oxygen took us straight back 12 months in a second.

Luckily, Anya did not have to be ventilated but it came very close. She continued to fight like she has since the day of her arrival.

Anya had a further four or five admittances to hospital with bronchiolitis during the following three months. The team of doctors at Whiston Hopsital, Merseyside were concerned about this and decided to prescribe Anya with long term medication to help keep infections from her lungs. The medics informed us that Anya will still suffer with bronchiolitis but the attacks should be mild enough to treat at home.

This medication seems to be working wonders with regards to her lungs however one of the side effects is nightmares which Anya suffers with each night. It is heart-breaking to listen to your baby girl crying for hours in her sleep each night, but it is the lesser of two evils.

On the approach to this winter, in November 2019, Anya had a number of infections, chest, ear and tonsillitis. She fought these off well with antibiotics and increased inhalers.

Our girl is bouncing and so happy. What a difference 12 months can make! We did not expect Anya to bounce back as well as she has done.

It's amazing how tough these premature and sick babies are. Their determination and fight is incredible. What they experience and have to fight off in their first couple of years is more than what some people face in a lifetime.

Family trip Summer 2019