Meet baby Stella - born at just 22 weeks and five days

For a premature baby to survive at such an early stage is practically unheard of

Stella weighed in at just 440g at birth – little more than a can of baked beans. She was born due to my waters breaking prematurely, what the doctors called ‘preterm premature rupture of membranes’ or PPROM. We were told a few hours later that she wasn’t going to make it and that if we wanted to get her baptised, we best do it immediately.

In a state of shock, Rob and I called my parish priest and he arrived and baptised our little girl. Then night turned into day and our precious baby was still alive. We were told that she was writing her own story, but that it would be hour by hour with her for the next few weeks. The rules are unwritten when you have a premature baby at 22 weeks and five days. It’s unchartered waters.

“Some make it… and some don’t”
A few days after giving birth I was discharged to go home and our daily commute to the hospital began. Rob and I found it very hard emotionally, physically and mentally just to get through each day. Simple things like eating, or feeding our dogs, even watching television, became a chore. How can you relax when you have your very own flesh and blood fighting hour by hour to stay alive? Stella had more tubes coming out of her than I care to think about. She was being kept alive by a very modern high-frequency oscillatory ventilation machine (HFOV).

It was on trial at the hospital and quite possibly saved her life. To walk through the doors of the neonatal intensive care unit (NICU) every day requires an enormous amount of strength, a positive approach and faith. Looking around at all the other parents going through the same thing with their little premature babies is heartbreaking, especially when it becomes clear some make it and some don’t. I struggled to stay positive when the baby next to Stella died. I ached to cuddle my daughter. We’d only touched her tiny little body with one of our fingers because her skin was so sensitive to any kind of handling.

Related: One of my babies wasn't alive

Holding on
A little over three weeks after Stella was born we were pulled into a room with one of the neonatal doctors, the nurse coordinator and a hospital counsellor. We knew the news was not going to be good. They told us that they’d done all they could for Stella. She was on 100 per cent oxygen ventilation and there was nowhere else to go. Steroids to strengthen her lungs were suggested but came with possible side effects, such as poor growth, raised blood pressure and high blood sugar levels, and could be linked with problems with brain development later in childhood. But we decided the steroids were the best thing for her and our little miracle kept fighting. Two weeks later Stella came off the HFOV machine and was put on a continuous positive airway pressure (CPAP) machine. It was a massive step forward and also meant we would get our long-awaited cuddle. She was so tiny and light, still less than a kilo. It was the most exhilarating feeling, holding her skin to skin. We had waited so long and it was one of the best feelings I have ever had.

The very first time Theresa got to hold Stella, skin to skin

Our own lifelines
When you have a premature baby, the hospital gives you information about websites and groups you can join to talk to other parents going through, or who have been through, the same thing. Li’l Aussie Prems Foundation was one of the groups we came across. They offer a lifeline to those going through the trauma of having a premature baby and helped Rob and me through many dark hours. Just reading other people’s stories and sharing bits of ours and our fears was an enormous help.

Another amazing service we used was Look@MyBaby. Given that only parents and grandparents were allowed to visit the NICU, and with the scare of not knowing if Stella was going to survive, the hospital put us in touch with this invaluable, free service offered so that our loved ones could see Stella via a TV in a viewing room. We gathered our large families and in groups of four they went into the room and saw Stella on the TV screen. This service is so much better than photos. It gave our family a feeling of being closer to her and that in turn helped us, because they could see what was going on and what we were going through.

Related: I thought I had miscarried our baby

Look at her now!
Little things were massive steps for Stella, Rob and me. When she was moved from heavy ventilation to the CPAP was huge. The day she moved from the NICU 3 nursery to the NICU 2 at nine weeks old was momentous. The stronger she got, the closer it felt like we were to bringing her home. When she moved from the NICU 2 nursery to the special care nursery at 14 weeks we could finally see the light at the end of the tunnel. She still had a long way to go, but this was the nursery before home!

Stella came home exactly five months after she was born, when she was 3.5kg. What a great, emotional, scary, overwhelming and exciting day. The first few weeks at home were strange. We had to get used to being Stella’s sole, around-the-clock carers after five months of having her care being out of our hands. I didn’t sleep for three nights because I was terrified of SIDS. I was so used to looking at the monitor to see her heart rate and breathing that I found it difficult not to have that. I eventually relaxed enough to sleep at night. Rob and I loved getting to know Stella on our terms and I could cuddle and kiss her any time I wanted.

Stella is now eight-and-a-half months old (her corrective age is a little over four months). She weighs a healthy 6kg and although she’ll always be on the petite side she’s doing very well. She’s just had a check-up with the neonatal team was really pleased with her. She’s social, baby talking and doing nearly all the things a full-term baby would be doing. We’ve been told that there’ll be some kind of developmental delay but as to what and how bad, we won’t know until she’s older. Stella has defied all the odds to date, though, so anything is possible!