We are Joanne and Scott Beedie, co-founders of Helping Little Hands, a charity providing food, wellbeing and other practical support and advocacy services to families with premature babies at King Edward Memorial Hospital (KEMH) and Perth Children’s Hospital in Western Australia.

Our mantra is ‘the best way to look after a premature baby is to look after the whole family’ because research shows the medical benefits for babies and parents when parents are involved in the care of their premies. However, we also know from our own personal experience how difficult it is in practice for parents to be able to achieve this and how much a rollercoaster the NICU can be. So, everything that Helping Little Hands does is to enable parents to be involved in care and to support families through their NICU journey.

We launched Helping Little Hands after our second son, Lewis, was born at 27 weeks at KEMH. Lewis was a twin, but his brother Logan was lost at 21 weeks due to twin-to-twin transfusion syndrome. This is our story.

Joanne

It’s Easter Sunday and I’ve had a few big pains. Another exam, I have some morphine and try to get some rest. I wake up 20 minutes later with a terrible pain in my back. In a blur, I think I need the toilet, but as I reach down I can feel the top of Lewis’ head! I hit the alarm and scream for help and suddenly my sons are here. Lewis and Logan – they’re entwined so much I can’t understand what I’m looking at. So many faces, voices trying to calm me…and then they take my babies away.

Scott

I feel a relief he’s here. I don’t understand the risks of the NICU, but at least it’s not weekly scans to see if he’s still alive. I know this nightmare started months ago, but we’ve been so focused on just getting this far, we’re not prepared for the NICU at all. As we enter the NICU for the first time, I’m pushing Joanne in a wheelchair, trying to steel myself for the unknown we’re about to meet. The sights and sounds are so alien, the rows of beds, the constant beeping of machines. We approach Lewis’s incubator and I feel displaced, like I’m watching another couple take this journey. Welcome to the sight of a 940g 27 weeker!

Joanne and Lewis Beedie, sharing their very first cuddle and valuable skin-to-skin time.

Joanne

I see Lewis underneath a mountain of tubes and wires, hidden by a CPAP hat and cradled in a towel nest. His head is the size of a tennis ball and there’s not an ounce of fat on him. His arms and legs are so small I could slip my wedding ring over them. His skin is like tissue paper. Staring down through the incubator it’s more like looking at a science experiment than meeting my son.

Scott

His nurse performs his first cares. She places a wet cotton bud in his tiny mouth and pulls out little streaks of gunk, then swaps a sensor between his feet. Now she places one hand under his head, the other under his bum and flips him over. I feel a little bit sick, we leave him and retreat to the relative safety of the maternity ward. I then go home to be there for our two-year-old Archie when he wakes up. He’s a big brother now, but it will be a long time till he gets to meet little Lewis.

Lewis Beedie in his NICU crib.

Joanne

I can’t really remember what happened last night. Did I visit Lewis first, did I hold Logan afterwards or did I have to express before any of that? I’m in a hospital room, alone, without either of my babies. The feelings of guilt are overwhelming. I haven’t done a great job so far and now I’ll be going home without them.

Scott

We meet Lewis’ doctor. She sits with us and looks us in the eye. I’m not sure what she’s saying, but just the tone of her voice assures me she’s in control and will guide us through the biggest challenge of our lives. It’s unspoken, but she seems to know we’re in shock, to know we’ve been through months of fear and we just need someone to grasp onto as a way of coping.

Joanne

I suppose now we‘re into the routine of the NICU. Lewis is growing and starting to look like a ‘real’ baby. Every day I sit watching the monitor as I cuddle Lewis; his heart rate settles and his oxygenation improves. I can feel my own heart rate calm, my own breathing settle and muscles start to relax. Look, his monitor alarm has stopped beeping and if I close my eyes I can almost convince myself I’m relaxed. I’m a real parent, and this is normal. Well maybe for five minutes, until he desaturates and his alarms go crazy again.

Joanne and Scott Beedie in the NICU with Lewis.

Scott

Now that I’m back at work, I feel like I’m failing to give anyone enough of my time. But even if I can only grab an hour a day, getting support from the nurses and being made to feel responsible for cares helps me feel like a real parent. I don’t feel so much like a bystander as I understand more of the medical jargon, what all the figures on his charts mean. We don’t need much, just a few minutes a day to update us on how Lewis is doing. Not ignored during rounds, not the back of a white gown or language we can’t understand.

Joanne

We’ve learned to celebrate mini milestones. Lewis reaching 1kg, a drop in oxygen, the caring nurses who take photographs or write in his journal. But there have also been some truly awful days: spikes in his bilurubin the doctors can’t explain, blood transfusions, chronic lung disease, inconsistency between staff. One day I’m allowed to reposition the sats probe and the next I’m getting told off. The days when someone checks Lewis’ name band and asks ‘so where is Twin B?’

Scott

People don’t seem to understand the need just to be with Lewis. My sister said ‘well it’s not like he knows you’re there’. My mum wants me to take it easier on myself and play golf with my dad. I know they’re doing their best, they flew in from Scotland to help, they’re looking after Archie, putting food on the table, keeping the house somewhere near clean. But they just don’t understand that time away from Lewis just makes it worse, adds to the guilt, adds to the fear of what we’ll find when we next see him. The support from our friends is dropping away too. I suppose people assume Lewis is fine, assume we’ve learned to cope. It feels like we’re on this rollercoaster ride alone.

Joanne and Scott Beedie with Lewis, proudly wearing his first Scottish kilt.

Joanne

So many parents have come and gone, new babies admitted, some just for a few days, others just starting their long-haul journey. We haven’t really talked to any other parents, we just move around each other eight, nine, ten hours a day. I’m not here to make friends, this isn’t a club I wanted to be in.

Scott

Waiting for our turn at rounds this morning, I heard the doctors discussing each baby’s condition. I was trying not to look at a mum in the corner crying because she couldn’t find a parking space and was late for cares. There was a nurse on the phone asking a parent why they haven’t visited their baby for a week. I think they don’t have childcare for the other kids, or dad’s away on FIFO, or there’s no money for petrol, or mum needs to save her maternity leave for when bubs comes home.

Joanne

I’m so hungry, but today I don’t want to grab another soggy sandwich from the hospital café. It’s painful seeing happy families arriving in with the balloons and flowers for the newly arrived ‘term’ baby. When we’re struggling, the nurses seem to notice and our social worker pops by. When she first introduced herself, I thought, ‘I don’t need a social worker, we don’t have family problems, it’s not my fault that Lewis came early or that Logan didn’t make it’. But that was before I understood the power of someone just caring, someone to talk to.

Joanne, Scott and Archie Beedie, ready to take Lewis home from hospital.

Scott

Lewis’ due date is in two weeks, so we‘ve started to talk about maybe getting home. It seems like some impossible event, we’ve been here so long I can hardly remember our normal life. For the last few days he’s been stuck on 26 per cent oxygen. It’s just a little, but every time they try dropping it a fraction, his desats increase. Yesterday our nurse mentioned that babies are sometimes sent home on oxygen. But when we leave here, I want all the wires and tubes gone, there’s no end to this if you make us go home with it.

Joanne

Today’s the big day! I’ve got Lewis’ coming home outfit ready – a little babygrow with a fox on the front and a white handknitted shawl given to me by a beautiful nurse 13 weeks ago when I was on bed rest. Archie meets Lewis for the first time and holds him, looking down making soft cooing noises. And then we get in the car and go home and everything seems calm and safe and good.

If you are interested to learn more about Helping Little Hands, please contact:
[email protected]
www.helpinglittlehands.org
Facebook @helpinglittlehandsAustralia