Love What Matters - Published February 2020

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‘The sounds, the smells, the whole NICU experience. It never leaves you.’: Mom of preemie creates nonprofit organization to ‘give back to the premature baby community’
Edited by Emily, Love What Matters

Published 12 February 2020
www.lovewhatmatters.com/the-nicu-experience-never-leaves-you

Photos supplied by NICU Cheer, mostly from Aaron Francis (Ashton's Dad: @afrancisphoto)

“On Mother’s Day 2016, I was just over 30 weeks pregnant when my son stopped moving in my belly. I had my cousin over that day and she was waiting to feel the baby kick, but it just never happened. I did all the tricks that day and night to get him to move. I drank a very cold drink, had a sweet orange juice, changed positions a number of times, but nothing would get him to move. He’d always been a total acrobat in my belly, as had his sister. Up until this day, he’d also had hiccups regularly, but there were none of those either, so I went straight up to the hospital the next morning. They checked him and kept assuring me he was fine–good heartbeat, blood flow, etc. I kept insisting something was wrong. During the scan, the baby moved and I didn’t feel it, so it was explained to me the most likely thing is the placenta had shifted and was now cushioning his movements. I was still not convinced, but by then, it was at the end of the day. They insisted on sending me home, saying, ‘Come back in a week’s time if you’re still feeling like it’s not right.’

I didn’t sleep all night. I just knew something was wrong, so I went back first thing the next morning. The intake nurse was less than supportive. She rolled her eyes at me and said to the medical student she was training, ‘We saw mum yesterday. We told mum to give it a week, but she’s come back today and wants us to tell her again that her baby’s okay so that’s what we will do. Mums always think they know best.’ She finished fitting the fetal monitor on to my belly and from there, things went bad very quickly. She immediately pulled the curtains closed, kicked the student out and left my room, only to come back shortly after with the person in charge, who took over.

From there it was a blur. That lovely staff member took my hand, sitting on the bed beside me and saying, ‘You need to call your husband. He needs to get here now. Your baby is coming out today.’ She went away for a bit and just minutes later was back saying, ‘Where’s your husband? He needs to be here. We need to start prepping you.’ I had sent my husband to take our 1-year-old for her vaccinations with our local doctor. I had to drop the bomb on him that our son was going to be delivered that day, saying, ‘Yeah, so they’re going to take the baby out, hun. You need to get here.’ He dropped Lily off with family and was there in no time, but it still felt like an eternity. While I was waiting for him to arrive, they began the extremely painful injections of magnesium (some mothers call it liquid hellfire and I think this is an apt name) to protect his brain and steroids to strengthen his tiny lungs. Unfortunately, the medication needs at least 12 hours in the body to have an effect on the unborn baby. Ashton continued to deteriorate.

All I could think was, ‘It’s too soon. He won’t survive being born now. It’s too early, he’s too small.’ I also remember willing myself to wake up from this nightmare. My belly hadn’t grown to the same big size it had reached with my first full-term baby at around the same gestation. I was still tiny, so I knew he would be too and that terrified me. My biggest fear was he would not survive the early birth.

When my husband arrived at the hospital, he told me one of the doctors came up to him and told him, ‘Your wife saved your son’s life. If she had waited even one more hour at home, we would have lost him and we would be proceeding with a stillbirth, not a live birth. Count yourself lucky, mate.’ It shocked my husband, but I was not that surprised when he told me later on since I knew something was very wrong when our extremely active little bub stopped all movement suddenly. A mother always knows. Always trust your mother’s instinct.

I’d stayed eerily calm through all of this chaos. When I rang my very best friend, Roxy, to tell her, she laughed and thought I was joking. It was horrible when I then had to convince her I wasn’t. However, when they had to prepare me for the emergency cesarean with a spinal, they would not allow my husband in the room. I was coping just fine until they wheeled me into the operating room. I remember counting 18 staff all standing there, waiting for me and for my baby when he came out and the adrenaline hit me all at once. The sheer number of people needed to save his life absolutely terrified me, so much I started convulsing and they couldn’t get the spinal needle in.

At this point, a man named Joseph (I don’t recall his exact role, I think anesthetist technician) came around and held my hands. I continued to shake uncontrollably as all of my fears hit me at once like a Mack truck, and he said, ‘You need more than a handhold don’t you? Do you want a hug?’ to which I sobbed, ‘Yes please.’ Then this lovely man pressed his forehead against mine and wrapped his arms around my upper torso while I hugged him tightly. They were able to get the spinal needle in. I never saw him again, but I will never forget him or his kindness. We named the very first teddy bear Ashton was given after Joseph.

 

The staff may have just been ‘doing their job,’ but they did it very well and with great compassion. I will be forever grateful for them and the staff who were far too busy saving Ashton’s life to talk to me. I appreciate them so much.

When I first saw our boy after he was whisked away, he was hooked up to so many computers, it looked more like a NASA mission than a baby’s area. The sounds, the smells, the whole NICU experience is something that never leaves you.

Every time I see a premature baby on a TV show, whether it’s fiction or reality, I cannot help but burst into tears as I just feel for the parents. I understand hospital staff must see mothers panicking about nothing all the time. The actual birthing unit and the staff of the neonatal intensive care unit (NICU) where he spent his first months were absolutely brilliant. They saved him when he came out early, they intubated him when he couldn’t breathe, and they nursed both Ashton and I through the next very long six and a half weeks before we could go home.

To honor Ashton and the journey he went through following his early arrival, I set up a not-for-profit organization called NICU Cheer to give back to the premature and sick baby community. We deliver gift bags to families of premature and sick babies, as well as hampers for the staff and boxes of toys, art, and games for the NICU family rooms too. We do this for three major hospital NICUs across Melbourne–The Mercy Hospital for Women, The Royal Women’s Hospital, and Monash Children’s Hospital. So far, we have done this three Christmases in a row. In 2020, I also want to do Mother’s and Father’s Day deliveries.

Seeing your baby with wires coming out of them all over is terrifying. It’s traumatizing and yet it’s also wonderful. It’s wonderful what they can do to keep our tiniest little ones alive. That is also why I started NICU Cheer, to give back to the NICU who saved him and to honor the pediatrician, Dr. Gillian Opie, who has been with us every step of the way, from that first scary day before he was even born. The staff is wonderful and they deserved to be made to feel as special as they are.

My son is now 3 and a half years old and still undergoing many tests for ongoing brain bleeds, undiagnosed extreme fatigue, and more. Even though he is too old for Dr. Opie’s Care (she is a neonatologist) and all of his testing is carried out at another hospital, she remains in charge of his care and helps us all the time with cutting waiting lists time, etc. She also has been a wonderful help in getting NICU Cheer established, as she welcomed my idea to drop off gifts. Each year, she even hands them out for us to the parents in the NICU on Christmas Eve. Last year, she came to the hospital, even though she was off on her annual leave, to meet us and help us unload and store our boxes of goodies and she was back again on Christmas Eve to hand them out to each of the cots in the NICU and special care nursery.

I often wonder if I would have had the strength to advocate for my baby the way I did if I had been a first-time mum, or if there had been a language barrier or any of the myriad of other reasons a mother may have listened to the advice to ‘wait a week.’ Ashton still has so many health and developmental issues going on, has been hospitalized a number of times, and has gone through years of testing. Every time, without fail, I have trusted my mother’s gut and it’s always been right.

For the first two years, we only delivered bags to the hospital where Ashton was born, but I’m so pleased to say for Christmas 2019, we tripled NICU Cheer’s deliveries from one to three hospitals and in 2020, we will also be doing Mother’s and Father’s Day deliveries for the first time, too. I spend all year contacting companies and requesting and collecting donated or discounted goods that go into the NICU gift bags. In three years, the bags have quadrupled in size and last year, were loaded with swag-bag goodies. It’s my way of giving back to the community you never want to be a part of, but once you’re in it, you make friends for life. That is the global community of parents who have had premature babies.”

Recipient: Federal Government Jaggajagga Community Volunteer Award 2020.
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