Light & Joy - Our Prem Story
I, like anyone, am so many things...
Friend to people I admire so much. Wife, to my awesome husband Dean. Mum to our beautiful 4 year old Vivienne and to our tiny warriors, ex 30 weekers Alexander and Jacob. And more recently, advocate and champion for all prems!
I have been so humbled to be asked to share our story. Our prem and our intersecting ReadyStepGrow story.
Because that’s the true story here. How we have, over the last 18 months, with the help of ReadyStepGrow, Simone and her amazingly gifted team, woven our prem story, the one filled with trauma, grief, pain, worry and the dark unknown into another story. A story filled with light, gentle guidance, self-paced progress, shared vigilance and advocacy and through this we have found healing, and a new, more certain direction for our boys and for our family in the rooms of ReadyStepGrow.
When I reflect on our journey there are some moments, some conversations, some feelings that will be forever burned into my memory. One of them is the words of my OB when we first learned I was going to be a twin Mum - ‘are you seeing what I’m seeing?” Another of them is the words of our ultrasound Doctor at a routine scan at 28 weeks - ‘this is a little unusual’. Another, is at an ultrasound appointment at 29+6 asking the Dr when they think we’ll be delivering these tiny babes and the response, ‘as soon as you get a 3 in front of your gestation”. And right he was, the very next day the boys were born by caesarean at Frances Perry House.
I had spent 10 days at Epworth Freemasons on bedrest, delivered at Frances Perry House at 30 weeks exactly, due to reverse end diastolic flow and subsequent intrauterine growth restriction (IUGR). Basically twin 2, our Jacob John, his placenta was breaking down giving him no blood flow from the placenta back to his tiny body which then started to shut down blood flow to anything but his brain. He was born 1061 grams not breathing. His brother almost 400 grams bigger at 1460g was born screaming. The boys were transferred to the NICU at the Mercy, Heidelberg shortly after their birth
By the time I got to the Mercy it was day 3, and I was in some kind of motherhood limbo, no babies, just milk, so much milk! No Vivienne who wasn’t yet 2 years old. Life was upside down and I saw for the first time our new reality for the next 75 days; isolettes, monitors, hand sanitizer (so much hand sanitizer), uniforms, breast pumps and beeping…
From there, minutes turned into hours of kangaroo cuddles interspersed with alarms for pumping and chatter with staff and canteen coffee. I got a little routine, it was not great but it was ok we’re going to do our time and we get to go home – right?
I got my first twin cuddle on day 9. By then Xander was off all oxygen support, Jake was on low-flow – which is really good for their gestation. And as I was holding them I said to Dean “Is Jake labouring to breathe? Can you see that?” Dean, an engineer, looked at the monitors, reading the numbers said “Nope! He’s all good, he’s ok.”
But he wasn’t ok. Jake crashed overnight and was re-intubated. By the time we arrived at his bedside he was being tested for infections that can be catastrophic to babies. Jake was treated for sepsis from day 10 through to day 21.
I remember his bed during those days being like an eye in a storm. So much activity around his small body. Towers of meds by his bedside that grew taller by the hour. The once friendly banter of the nurses became concerned looks and pats on my arm and conversations focused around medical plans…
This is when we really realized, with all the best people in the world at our side (and I truly believe we had them with us) nothing is guaranteed. We may not even get home in one piece.
I had read those posters around the hospital encouraging parental advocacy. If you notice something, say something.
Well, I had seen something, something with my mum eyes and this is the point I was slapped awake. An epiphany! This journey is not just about time. This journey is time, plus luck, plus skill, plus input.
Over our time in the NICU we had one Doctor in particular whose advice really resonated with us and one who was actually quite pivotal in the evolution of how we managed our children’s health.
She had, had a kind and quiet word to Dean at the boys admission to the Mercy that had reassured him that we could work with the team around our boys to achieve better outcomes to treatment
During Jake’s infection, it was this Doctor, who by this time we had grown to know, pulled me aside as well and had a good chat to me about the part I could play in this journey. She spoke about the boys as individuals and not ‘all premmie babies’.
She encouraged me to observe, take note, to be part of this journey, she helped me to see where and who I could speak to, how I could speak, to really affect change and benefit the boys. And this encouraged me to find my feet on the ward. I was at rounds, I contributed to conversations, I watched, I listened. And I think it’s really important that I say here, that I also trusted. There was no me against anyone. I trusted the team we had around us and we were just that. A team.
Because in what happened to be my last interaction with this awesome Doctor, which started as a rare and personal two-way conversation about her career, future aspirations - a dream for a clinic just for prems that provided holistic support to meet the challenges preterm babies face - sound familiar?
She spoke with such passion and detail, I mean she even spoke of the décor! I could see the passion for her work. I had felt it in our interactions and I recall how I was simultaneously listening to her and realising that this wasn’t the end of our journey here at the Mercy. The boys were going to need a safety net of specialists to get them the best start possible. And without a clinic like she was painting with her words, I was going to have to find these people myself. I would need to be my own advocate for my babies.
And it was that word advocate, ADVOCAAATE that hung in the air and somehow seeped in by osmosis and planted a seed deep inside my mothering and has grown there ever since…
I know some of you will have known the Doctor I’m speaking of, Dr Hayley du Plessis. We were so honoured to have met her and so fortunate to have had her on our journey. I think of her often and fondly. It was like she handed me the flashlight I would need to help me find our way through this chasm that is prem life (before I even knew I needed one) and I was, and I am, still so saddened by her passing.
As parents to premmie babies, we learn so quickly that the NICU is like a cocoon, so much longing to leave and then the ‘leaving’ feeling so completely ‘sudden’ and then you’re somewhat adrift when you do.
Xander was home first at 59 days; his brother 3 weeks later at 75 days and with home time comes the questions, the questioning …
And for the most part, we have few people to check in with; Maternal Child Health Nurses with varying knowledge of a prem or IUGR baby, Specialist appointments weeks apart, Mothers groups with other nervous mums with full-term babies, and dare I say it: Facebook forums! It’s like a door to a whole other world has been opened to us, but with no roadmap to help us navigate through.
Ready Step Grow is the safety net that caught us after months in the NICU
We started at RSG at 6 months actual after the whirlwind of NICU and hospital in the home. We were still in shock of having twins (I think that shock remained until the boys were a year old to be fair) but in that time, ReadyStepGrow had already caught us and anchored us and in truth, it really still does.
Talking to my prem-Mum squad, both through RSG and elsewhere, I’d say we often have a level of worrying-observation around our kids. It’s chicken/egg type stuff; is being prem the reason something is happening? Or is such and such a sign of something deeper?
And any one of those mums struggling with questions as important as these are keen to find help, are keen to feel heard and supported just like we do at ReadyStepGrow. But do they have the same level of support in one place? The answer is, it’s not likely.
In our time at RSG, we have accessed a physio for Jake’s walking, a speech therapist and OT and dietitian for Xander (all subsidised through the generosity of the RSG donors). Jake learned to walk in a RSG class. To be surrounded by Mums and Dads that day who understood my relief to see our babies (who have fought so hard for every milestone) witness along with me my baby, gain his confidence and walk! I will never forget that day…
I believe for me, our first child taught me how to be a Mum. Having preterm twins taught me how to be ME. To strip back the layers of self-doubt, perceived judgement and expectation, to break me down, only to let me rebuild myself with only the bits that really, truly matter.
And it is because of this I know that, an advocate isn’t necessarily born, sometimes we are made. Through experience and challenges and mistakes. And the regret of “why didn’t I just speak up, ask one more question...?”
Because as parents to preterm kids, we must learn to speak another language so that we are heard and heard quickly like our life, or the lives of our children depend on it!
ReadyStepGrow gave me the words, the language to go and speak for my children, to cut through the medical disconnect, to speak ‘up’ for me and my family and to keep searching until my questions are answered. As if the quality of our lives can depend on it.