As told by mum Xenia,
We were in the NICU 6 years ago with an extreme prem that had been born on the 9th May 2018 by Classical C-Section under general anaesthetic. We were told she had about a 40% chance of survival but because her weight was good and she was a girl she had a a better chance. Born at 24 weeks + 1 day. 29cm and 676g. We went through that wonderful honeymoon period, I had my Kangaroo Cuddle the day after and it was amazing being able to hold my very tiny baby in my arms for the first time.
Unfortunately I had to be discharged from the hospital. It was 3 days after Celeste had been born and the day BEFORE Mothers’ Day. I had gone home that Saturday evening with an empty tummy to an empty nursery and cried the biggest ugliest cry. It had honestly felt like I had truly lost my baby. But the next morning I made a plan to get some chocolates and goodies and cards to thank those nurses who were on shift that day that were missing their Mother’s Day or being being able to share it with their own mother. I got to my seat and found this amazing package from the then Neonatal Trust (now Little Miracles Trust). What stood out to me the most was the beautiful Mother’s Day card to me from Celeste with her tiniest footprint. I have this and many of her very special keepsakes of her time in the NICU/SCBU.
Her brain scan on day 5 went smoothly but unfortunately very soon after that things went south. To cut a long story short – NEC stage 2 so NIL by mouth for 3 weeks. Many times bagged. Incredibly labile. Chronic Lung disease, she was on the ventilator for about 12 weeks. She had CRV. She was in between the NICU and the SCBU for 147 days. 5 months and 1 week! When she was 2 weeks old corrected she needed laser eye surgery as she had developed stage 3 ROP in her right eye and if we didn’t operate she could possibly go blind in that eye. We also found out a week before discharge that she had profound hearing loss in her right ear! This was so much to deal with! On top of that I had been pregnant with twins and lost the one (we call him/her Alex) between 8-12 weeks and then almost lost this one.
Well the scary stuff is long over and here are some pictures of our journey with our beautiful little girl Celeste! She is sweet and sassy and cheeky and talks up a storm! Super clever and is pretty much potty trained!
I wanted to share this because when I went through that scary journey I mentioned above and I had hunted and hunted for posts of any ex-24 weekers that had been through a similar journey but now a few years older and doing just amazing or even just normal – but struggled to find anything!
I hope this post and the pics below brings some mum and/or dad in the NICU / SCBU some hope of what you may be able to look forward to in the future especially when your journey has just started and it seems so far away – I cannot make any promises but may this give you and your family some hope for the future and if/when that day comes that you get to finally take your baby home – it’s a day you will never forgot and the friendships we formed with the parents there we still have some of them to this day!
Hang in there! You got this!”
Thanks so much for sharing your personal story.
We get a lot of positive feedback from families in a neonatal unit who read these stories and feel strength, hope and positivity knowing that they are not alone going through these experiences and feeling certain emotions.
If you would like to discuss sharing the story of your neonatal journey, we’d love to hear from you. Please email info@littlemiraclestrust.org.nz
If you want to help our support of families going through the stress and anxiety of a neonatal journey, you can donate here.
- The Little Miracles Trust provides support to families of premature or sick full-term babies as they make their journey through Neonatal Intensive Care, the transition home, and onwards. We do not receive any Government funding and are entirely reliant on the generosity of individuals, companies and organisations in the form of donations, value-in-kind donations, grants, sponsorship and fundraising events to supplement operating costs and fund our services and initiatives.
- As we are a registered charity (CC56619) with Charities Services New Zealand we will send you an IRD compliant tax receipt – this will happen automatically by return email
