Lyra's Story, 26 Weeks   

Miracle Mum, Belinda shares her journey welcoming baby Lyra into the world and the value of having other mums going through the same journey to support her.

"My little girl was born at 26+5 weeks via emergency c-section at The Royal Women’s Hospital. We knew our best-case scenario was her being delivered early as for no medical reason my placenta had begun failing at 20 weeks. At 26 weeks I had steroid injections to give her lungs a chance and we knew it would be soon and that she would be born weighing around 500g.

Within five days my body went into preeclampsia and while still in my second trimester I gave birth to my little girl Lyra, who weighed only 519g.While she came out breathing it was too exhausting for her and so they had to ventilate her. So began our 120 day NICU journey...

Before this year I had only known two people to give birth prematurely but both were due to going into labour early, both above 30 weeks and both babies were over a kilo in weight.

I feel like for the first two weeks I just held my breath and waited for the worst to happen. I was dealing with my own physical wounds from the birth but suddenly I had this tiny, helpless baby that was born too soon. I felt like there was nothing I could do for her except sit by her side and listen to the constant beeping of her saturation level and heart-rate.

On my day of discharge, Lyra was five days old and I was beside myself that I would have to leave her behind. Even writing it now I have a wrenching feeling in my heart and tears in my eyes. Thankfully, this was also the first day I got to hold her. It took four nurses and I couldn't hold her for more than an hour but that hold meant everything. She belonged to me and I to her. I knew from that moment on I would spend every day by her side until she was finally home with me.

We were fortunate that our time in the NICU was not a rollercoaster. Sure, there were frustrating moments, times she went backwards with breathing, poor eye test results and many, many blood transfusions but in the prem world our little fighter was lucky.

Her main issue was (and still is) her chronic lung disease. Every day I would come in for rounds, terms and words that felt foreign at first became the norm and I learnt to read her monitors so in time I didn't jump at every beep. When I couldn't hold her, I read to her and I chose novels so that she could hear my voice for longer and we could go on an adventure together. My husband also read to her. I had to keep many family and friends away to protect her immune system. I encouraged them to record themselves reading her books on singing songs and I would play them for her.

For the first six weeks I spent 6-10hrs minimum with her every day and the stress took its toll. In the NICU you are constantly listening to beeping, you witness some truly scary moments; both my husband and I had our girl turn blue on us during cuddle time... it is in these times where you need self-care. The most important thing for me was to remain healthy so I could keep coming in and producing milk. I started going to Mothers’ Group, made friends with other NICU Mums and went for daily walks even if only to get coffee. This and making sure I slept well helped keep me healthy enough for her. It is hard but we need to take care of ourselves, even in these awful circumstances.

We spent over 60 days in NICU, where Lyra went from ventilation to CPAP and eventually High Flow (with a few backwards steps on each). When we were moved to High Dependency she was still too small to be in an open cot and had to remain in an isolette. She also didn't get her first bath until she was 75 days old.

By 95 days we had been in Special Care for over a week and on low flow when we were transferred to The Northern. This was incredibly hard. We had spent her entire life in this hospital; I was part of the Mothers’ group, my husband went to the Fathers’ group, the doctors and nurses knew me and I knew how things worked so well I could even discuss Lyra at rounds. It felt like our safety net, her first home, was being pulled out from under us. It was harder on my husband as he worked 5mins from The Royal Women’s and now it would take him over an hour to get to The Northern each night.

We moved and we survived; our plan post transfer was to get our daughter healthy enough to bring home on oxygen. We worked hard with the nurses, doctors and the Allied Health team to reach this goal and at 120 days we were allowed to finally take our little girl home.

Of course, once you leave the hospital your journey doesn't end; it can be very lonely and frightening. I am so lucky that I met an incredible bunch of mums going through NICU at the same time as me. All have their own stories to tell and some are definitely rougher journeys than others, but what we have is a support network of people who truly understand what we have gone through and can be a text or phone call away, even on days I am stuck with a sleeping baby in my arms.

Lyra is now a one year old and just over 7kg. She came off oxygen after 251 days in total, including weaning her where she only required it at night. Thank goodness, as taping her each night was becoming a fight and seeing her so upset broke her Dad’s and my heart every single time. Her speech pathologist, dietitian and respiratory specialist no longer need to see her unless we feel something is wrong. We still see a physio and a dermatologist but the latter is for her hemangioma and it is more just keeping an eye on its growth.

I've definitely struggled; especially now, a year out, I find so many emotions I pushed down are coming out. Having a great community of mums I met at The Women’s Mothers’ Group and Miracle Babies has definitely helped. It's nice to have people to talk to who understand and don't invalidate your feelings because you now have a healthy little baby.

Every day we are so grateful to the those who helped get us here and those who continue to help Lyra become this amazing little girl."   

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