I first heard about Juniper through the BabyCentre app as her mum Seane is part of the November group of mums and bubs. I then followed this lovely family on Instagram and got to learn a lot about what being a micro-prem baby entails. Seane’s positive and resilient approach (plus Juniper’s gorgeous attitude to life!) encouraged me to make contact. She tells us about Juniper’s journey and answers some questions below.
I’ve learned a lot about Juniper and your family’s journey from your Instagram account but for those who aren’t familiar could you please sum up Juniper’s story?
Juniper was born at 24 weeks weighing 715g.
14 – 19 weeks – We suffered PPROM (Preterm Premature Rupture of Membranes) at just 14 weeks gestation which caused Juniper’s placenta to begin to pull away from her amniotic sack at 19 weeks, resulting in my first haemorrhage, and eventually rupturing completely resulting in further haemorrhaging followed by Junipers birth.
PPROM meant that Juniper lost almost all her fluid, she had no fluid left to grow and that alone put her at huge risk of restricted growth, poor lung development, joint issues, and cerebral palsy.
Because of these risks and of course the very high chance of Juniper simply not surviving I was offered and, at times, advised to terminate – every week from 18 weeks (the PPROM confirmation) until her birth.
Risks for her life increased further when her placenta began to rupture and I suffered 2 rather severe haemorrhages which obviously posed a risk to my health also.
I spent a lot of time in hospital from 19 weeks onward – it felt like forever and the bleeding was a constant reminder of what was happening. Some days were so incredibly hard to get through but my partner was incredibly supportive.
Our goal was to make it to 24 weeks (past viable age) and we did just that, but it really was a fight. Because Juniper wasn’t considered ‘viable’ our small town hospital wouldn’t transfer us to a bigger hospital until she reached 23+6 (the doctors strongly believed I was going to lose her). This scared us because if she were born here, she would not have survived due to lack of equipment.
23+5 Weeks – Sick of waiting and having a horrible feeling something was going to happen, at 23+5 my partner requested the hospital sent my information to RBWH Brisbane and he drove me the 5 hours with our 7 year old daughter while I was still losing blood. I remember arriving late on a Friday night and being more scared than I had ever been throughout this whole experience- I had the worst feeling – my anxiety really set in when my partner and daughter left to get some sleep.
That weekend was long and filled with tears as we prepared for what was supposed to be a very long stay. My partner was planning to leave Sunday evening to be at school and work Monday to return the following weekend when we were told the doctors will do a scan Monday morning, of course my partner decided to stay to be present for the scan.
24 Weeks – I went into labour at 10:30pm Sunday and gave birth naturally at 03:07am Monday – my partner made it for the birth and heard our Juniper’s first cries.
Weeks and Months after Birth – Juniper was intubated at birth as she couldn’t breath on her own and I waited a long 3 weeks for my first cuddle. No words can describe how that felt. Juniper spent a total of 8.5 weeks ventilated to assist with her breathing while her lungs grew. During that time I honestly lost count of the amount of times we watched our baby turn limp and blue while alarms sounded. It became normal to nudge and poke our baby to remind her to breath.
It was an extreme roller coaster for a good 2 months.
Then one day she was just ready… She was like a different baby. I remember the relief and joy I felt that day. I saw her and she even looked different. It was mostly up hill from that day, the tube was taken out and she went onto NIPPV (Non Invasive Positive Pressure Ventilation) followed by CPAP (Continuous Positive Airway Pressure) then high flow and, finally, low flow over the next 2 months.
From Junipers birth I had to express every 3 hours, 24 hours a day and continued until she was able to take suck feeds. It gave me something to focus on but at the same it was so draining (no pun intended). My life ended up revolving around expressing for quite some time.
Home – Juniper was transferred to our local hospital the day before her due date after 111 days at RBWH and got to come home 6 days later on oxygen therapy, which she remained on for 5.5 months due to her CLD (Chronic Lung Disease). With CLD being her only major health issue, Juniper had a rather uneventful journey compared to so many babies we met along the way. Don’t get me wrong – it was terrifying and draining in every way possible but despite all the scares and struggles we’ve been very fortunate.
Juniper defied every and all odds against her. Her doctor and all the doctors were constantly surprised and amazed with our June-bug, she certainly didn’t go by any books. She was also known as the Madonna of the babies as she didn’t need her last name to be known, I thought that was pretty special.
A lot of people are familiar with the term ‘premature baby’ but what makes a baby a micro-prem?
A micro-prem is a baby born weighing less than 800g or born before 26 weeks gestation.
You must have been through an emotional rollercoaster from very early on in your pregnancy? How did you stay so resilient and what support did you have?
When the PPROM was confirmed I researched every little thing I was told and all outcomes both good and bad. Basically mentally preparing myself as best I could.
I told myself that whatever happened, happened and I would cope and accept it as it came but I was wasn’t giving up on my baby, I couldn’t – after all I was the one suffering through the pregnancy she was going strong the whole time and that alone kept me hopeful and positive.
At the time we found out about our issues we were in Far North Queensland about to move south and away from all my family and friends, so once we moved we had very little support, it was basically just the 3 (or 4) of us and we kept each other strong.
Do you have any tips for helping parents bond with their baby whilst in the NICU?
My tips for parents would simply be to stay positive, especially around your baby – they vibe off the energy you put out to them and it truly does make a huge difference.
Get involved with everything you possibly can when it comes to your babies care and have as many cuddles as your baby can handle. Touch and read to them – let them know you’re there.
You have another daughter as well, how did your family deal with everything together?
For the 16 weeks in Brisbane myself and my family stayed at the Ronald McDonald house, our other daughter went to The Lady Cilento Hospital School from Monday to Friday. We got into a routine and just made it work – you do what you need to do.
Between myself and my partner, we spent at least 12 hours a day at the hospital with Juniper. One of us would spend the afternoon with Miss 7 and we’d spend time together as a family on the weekends and most evenings.
Sometimes it was hard and when that would happen we’d take a step back and slow down. Miss 7 coped so incredibly well with the whole experience and I will forever be so so proud of her.
Do you think there should be more awareness and information given to parents about preemie and micro-preemie babies? Would this help them to make more informed decisions if they found themselves in the same situation?
There definitely needs to be more awareness about prematurity and all the things that can cause it. Not only would it help women make more informed decisions but make NICU less daunting for new mums – not knowing is always scary.
I knew nothing about the NICU world or what was available until I experienced it all first hand.
Does your day-to-day life differ now because Juniper was a micro-preemie?
When we first came home with Juniper she was still tiny and on home oxygen so things were always going to be different compared to bringing home a term baby – it never really felt ‘different’ to us. The oxygen made things hard sometimes (some days I’d just be over it all). Running into the shop, doing school runs or going anywhere was more of a chore but given how delicate her lungs were and how long we had been in hospital I didn’t want to go anywhere anyhow, I just wanted to enjoy being home with my baby and having her all to ourselves.
Once Juniper was bigger it all became a little more easy and then when she came off the oxygen ay 5.5 months corrected (9 months actual) it all became even easier again as she could roll around and play without tangling herself and really start to enjoy growing and learning.
Other than that Juniper has always hit her milestones in time for her corrected age and that always gave a sense of ‘normal’. It was all normal for us… All in all even the hard days at home were better then any day spent in hospital.
**corrected age is the age from the due date & actual is from birth**
Anything else you’d like to mention?
Our journey was draining (emotionally, physically, financially) and full of the lowest lows and highest highs but given the alternative being never meeting our amazing little girl… I wouldn’t have changed a thing.
The strongest people I have ever met have also been the smallest.
Ill also add that when we finally brought Juniper home it was just 2 days before she was admitted back to hospital with a horrible staph infection and zinc deficiency. I would not wish that upon anyone – out of everything we had been through it was by far the worst thing to watch her go through and really ruined her start at home as it also resulted in breast aversion and severe reflux. It was heartbreaking and took a month for her to fully recover. After 4 months of her fighting to survive it was just too much and it was the thing that broke me after all that time, I really struggled to accept it and cope with it.
If there was one thing you could share with other mother’s or those thinking of having children what would it be?
For mothers planning, expecting or parenting you’re own best is the best you can give to your children and as long as you’re doing that then you are doing amazing.
We are all stronger then we think we are.
What resources do you suggest for further information and is there anyway we can help to support families with premature and micro-prem babies?
There are foundations like ‘The L’il Aussie Prems Foundation’, ‘RBWH Foundation‘, ‘Life’s Little Treasures Foundation’, ‘Miracle Babies Foundation’, ‘Mater Foundation – Mater little Miracles’ and many other local foundations to each major hospital dedicated to sick and premature babies.
The Lil’ Aussie Prems Foundation also has an amazing Facebook group for parents of premature babies of all ages from all over Australia to come together and support and guide each other through the roller coast ride that is being a preemie parent.
Milk banks are another way to help support premature babies and their families. RBWH has their own Milk Bank that provided pasteurized human donor milk to prems all over QLD and like most Milk Banks they are seriously under funded.
I myself donated over 120L of my milk during my stay which fed 74 other babies and helped give them an even better start. I donated a further 100L to 5 babies through a Facebook page “Human milk for Human babies” after noticing such a high demand for women and babies who don’t have access to Milk Banks and having such an over supply.
You can follow Seane and her gorgeous family here on Instagram.