My Strong Little Journey: Jess, Xander & Jake- Twins at 30 weeks
Hello there. If this is your first time visiting My Strong Little Body, welcome! My name is Alana and I am a paediatric physiotherapist from Queensland, Australia.
My latest project is this: My Strong Little Journey, and it has been such an honour and privilege to be a part of.
I’ve asked real Mums and Dads, with real experiences of paediatric physiotherapy to share their story with me (and you); to let their guard down, and tell it how it really is on the other side of the fence. What it feels like to be the “parent of the patient”.
Sometimes the journey will be nice and smooth and simple and all the loose ends can get tied off nicely. There is a beginning and an end. A cure even.
But more often than not, having a child with a health condition can be really complex and messy. It’s a long, winding road. It can be tough on families. I’ve asked these parents to tell their story how they would’ve liked to have told their own friends and family. What they would have liked to hear themselves in the early days.
What I do know is this; these stories, no matter how small, are going to be incredibly helpful and reassuring for families going through similar experiences themselves, and I am sure they will also be really valuable for therapists too. Giving us the opportunity to walk in their shoes, even if just for a moment, is a wonderful gift these parents are giving and I am so humbled these families have opened up to me like they have.
So thank you for sharing your story today Jess. Jess is an old friend of mine who is the lucky Mumma of premmie twin boys, born 4 years ago.
LET’S HEAR ABOUT HER boy’s STRONG LITTLE JOURNEY AND HER experience as a mother, having twins born at 30 weeks.
As a mum of premmie twins, I sometimes participate in research studies on either subject.
The last one I did was a study on the impacts of pre-term birth on family, with one of the questions:
‘What are the positive impacts for your family, having a baby prematurely?’
I loved seeing this question in the study - I loved even more that it was asked before the inevitable ‘what were the negative impacts…?’ question. But what really struck me was that 4 years on, the positives are like a laundry list of ‘silver linings’, while the negatives are very few, and more of a waterway of trauma that ebbs and flows when we dip back into it from time to time….
My name is Jess, my husband Dean and I live in regional Victoria with our brood, Vivienne who is 6, and twin boys Alexander and Jacob, aged 4.
Jess and Dean with their ‘early-babies’ in the NICU
Our boys were born 10 weeks early in April 2016.
They were due in late June and if on time, it would have been after their older sister had turned 2 (yep, that right we ended up having 3 babies under 2 years old!). So much of our twin-birth story begins with:
‘well this is a surprise’
‘um, that was unexpected’
‘uh, this is unfamiliar territory’
and even an itsy bit of
‘maybe this is not meant for us’
… but on reflection the boys’ early arrival and our journey through that, and by the mere fact we have twins at all, has enriched our lives far beyond what we ever thought was in store for us. Our journey with our early-babies has changed us individually and as a family, in so many positive ways.
We were definitely not expecting twins! They don’t run in our family, and they are the ordinary 2 eggs-2 babies kind which resulted in fraternal twins or the non-identical kind. They didn’t share a placenta or a sac, I was healthy with no issues in my last pregnancy and so were categorised as low-risk, and while some multiple pregnancies do result in birth before 37 weeks (which is the point where premature meets full-term), many don’t, and we had no reason to think we would find ourselves experience very early pre-term birth.
I was aware however that this time would be different for us.
I had mothered our first baby with a ‘4th trimester approach’, a gentle transition from womb to life, with lots of baby-led feeding and sleeping (a privilege to experience, I now know!!) and I remember my first thought finding out we were having twins was, ‘how will I manage the ‘4th trimester’ with 2 babies and a toddler??!’ So the physical necessities and emotional responses for a baby’s gentle entry into the world were already front and centre of my mind before we had any inkling they would come early.
A routine ultrasound at 28 weeks picked up an anomaly in blood flow in Jacob’s umbilical cord.
'Absent end diastolic flow’ means that while oxygen was still reaching Jake, he was no longer getting enough nutrients for his tiny body to develop at the rate it should. He was then diagnosed with Intrauterine Growth Restriction or IUGR, which means a baby ‘spares’ growth of extremities to ensure his little brain can still grow - already a clever little warrior weighing less than a bag of sugar.
As days turned to weeks, many doctors and nurses would measure Jacob’s growth to assess the ‘tipping point’ between his physical distress and his brothers gestation. In some cases increased monitoring will be able to give a baby more precious time in the uterus to grow and for lungs to develop, and while I was on 3 weekly ultrasounds, then hospital bedrest, then twice daily CTGs to monitor movement and heart rate, I was reassured that this level of monitoring could go on for many more weeks. I became acutely aware that every extra day we could provide them would make their NICU journey that much easier.
However in Jacob’s case, it meant he would not grow any more than what he measured at that routine ultrasound, and we would soon learn his placenta was quickly failing. he would need to be delivered immediately. For us that decision did not just impact Jake, but also his twin brother Alexander who was tracking along nicely.
It wouldn’t be our story to limp across the line, we were going to be a freight train…
The boys were born by caesarean section at 30 weeks exactly. Alexander was first out, weighing 1460g and trying so hard to stay where it was warm that he actually clung to me as he was born! Jacob came 2 minutes later weighing a mere 1061g and not breathing.
I didn’t get to see the boys for the next 3 days, as their best chance at survival was another hospital and an hour away.
The tight confines of your baby in-utero over those final weeks of pregnancy, as uncomfortable as it is, is all for the purpose of your baby building strength and gaining weight. The stretching and rolling and pushing against your tightly stretched skin from the inside, the kicking against your ribs, organs and bladder in the middle of the night, is enough to build strength in our tiny humans through resistance. This is something a prem baby misses out on, and what can feel like endless days of waddling and feeling too big to get off the couch for an expectant mum, this time sets our tiniest humans up to be strong, adjusted and capable bigger people as they grow.
The NICU attempts to mimic the womb in many ways.
The NICU attempts to mimic the womb in many ways;
Warm isolettes
Low stimulus (isolettes covered in blankets)
Meaningful firm touch (no light stroking)
Limited handling except for long stretches of skin-to-skin contact (which is proven to improve vital signs in humans)
and ‘nesting’: a prem baby is repositioned time and again in his warm isolette (under the direction of a specialist NICU physiotherapist) to help his tiny body grow as intended, but also to be cocooned in bedding that keeps him curled to improve core strength.
Our 75 days in the NICU showed us the difference having the chance to implement these practices can make.
Xander’s lungs were well developed and he had no significant health issues, so with minimal intervention, few cords and low monitoring, we could frequently hold him and feed him, the nurses could roll him and nest him on schedule and he quickly put on weight.
Jake was his direct comparison, with Chronic Lung Disease (poorly formed lungs) and an infection that brought us very close to losing him. He had big IV paddles on his little limbs, which splayed his body and built strength in his limbs but not his core, breathing apparatus which made him difficult to manoeuvre from his isolette so reduced our skin to skin contact, and on his many ‘bad days’ he could only sleep in one position that best suited his little lungs. His body reserved energy for breathing, not growing, and his head flattened and nostrils were damaged.
This was not the ideal 4th trimester…
But at a time I grasped silver linings like slivers of light to show us the way through an unfamiliar and dark time. I felt life had already provided me with some tools to help the boys get through this time.
I had experienced PND with our first born only a year earlier and the wonderful supports offered by the council where we lived had me at a regular ‘mums and bubs’ group that focused on ‘helping mum and moving bub’, so early movement and exercises had been part of my mothering dialogue before the boys were born. Cross-body actions, various ways of approaching tummy time, critical movements to build coordination, understanding eye contact and face recognition and all the ways to build relationship in the early days.
It meant I knew what the boys were missing out on, but also empowered me with new and creative ways of where I could step in to fill the space if I could.
I sang them the same lullaby so they knew it was me, especially during a medical-intervention when I wanted so badly to take their pain away.
I worked with staff and stayed for rounds, I took my role as a partner to their medical care team and parental advocate very seriously and it was my experiences up to that point that gave me the confidence to do that.
It was through our hospital I found an early intervention program designed especially for prems. Founded by an ex-teacher and NICU nurse Ready Step Grow provided an amazing suite of professionals from OT, Nutritionist, Speechy, Physio, and Psychologist who through regular play-based activities helped us heal and grow as a family.
Jake back visiting his NICU physio at 4 months old
Regular assessments helped me see my babies as individuals and we met their individual needs based on their own ability and capacity.
We focussed on core-strengthening, stimulus tolerance, food eversions and feeding issues, and we had specialists who were on our journey being able to intervene and support us along the way. Jake saw the NICU physio for positional plagiocephaly (flat head), for core-strength like learning to roll and tummy-time; and when his brother had already been walking for 6 months and Jake seemed stuck in ‘bum shuffling’ mode, we saw his physio for help with his crouching which soon turned into walking.
Jake learnt to walk in the rooms at ‘Ready STEP Grow’ - surrounded by mammas of early-babies all with our own basket of pain trauma and challenges we were working on. we cried like babies, while the babies laughed at their silly mammas.
Services like ‘Ready Step Grow’ are wonderful but they can be expensive and difficult for families to access. When I saw Alana’s work with her book and online options it made Paediatric Physio accessible for anyone interested, concerned or conscious of development in babies and meant every baby could have the support our boys were so lucky to have.
While hospital out-patient programs recognise prematurity up until a child is 2 years old, many ‘issues’ for prems are picked up at school age; lack of concentration, sensory processing disorders, emotional regulation, physical issues relating to core strength that impact concentration and learning, but by then the work is a bigger mountain to climb and far more progressed than it needs to have been.
There is a push to have prematurity recognised up to school age and not cut-off at 24 months when we stop correcting their due date and birth date.
What I see now is the ongoing effect of intervention in the NICU for Jake. He lacks a body awareness his brother has, and as a mamma I see his confidence is lower than his actual ability. It means he is nervous to try scooters and bikes and running and the things he sees his brother do.
but if NICU taught me anything is to not compare our kids, any kids - and he is on his own journey just as we all are.
Jess and Dean and their beautiful brood today.
These days, our boys are in kindergarten and I find I am still advocating for them as we navigate early childhood education. In any young child’s life, months make a lot of difference when reaching milestones and the boys were almost 3 months early.
But we are so, so lucky. We have built our tribe from our time in NICU, from our multi-mums groups and where we live. It took us a while to feel it, but we have been doubly blessed with 2 little rascals at once and an opportunity to help advocate for families in this space.
NOTE FROM ALANA
I want to extend my thanks once again to to Jess, for opening up and telling us her story of being Mum to Jacob and Alexander (and Viv!). I hope with all my heart it resonates and is helpful to other Mums and Dads going through a similar experience.
For those of you going through the NICU period right now- please know there is a light at the end of the tunnel. I think Jess really wants you to see that.
I was actually quite in awe reading Jess’s story, how she had so obviously researched everything to do with the care of her babies so meticulously, even in the midst of the post-natal experience that had come so unexpectedly early.
At a time when most of us are already heading home and just trying to get our heads around feeding and settling our babies, Jess took it upon herself to research the importance of all the NICU intervention, to the point where she felt empowered enough to say she was taking on a role as a ‘partner to their medical care team’ . I loved this, and I hope it helps other Mums feel more empowered too- to know they can really step up and advocate for their babies, not only in a NICU environment but all the way through to school years. As Jess so beautifully described, premmie baby’s journeys often don’t end when they say goodbye to NICU and it’s important they are advocated for and get the support they need for the years ahead.
And as is the case with all of the My Strong Little Journey stories so far, the continual message from these families seems to be to ‘find your circle’. Surrounding yourself with professionals that can support you in all aspects of the development of your child is so very important, but the common thread intertwining all of these Journeys is the importance of finding other parents going through the same thing. They will become your people. Your support and comfort. And for many that bond lasts long after the days of medical intervention are over.
Do you have a story you would like to share? Please get in touch. I would so love to hear from you.