There are so many moments during our NICU experience that could have gone so many different ways. Our experience was heavily influenced by the people who surrounded us; other parents, nurses, doctors, Ronald McDonald Charity volunteers. But a massive influence for us, during our entire stay at Nepean Hospital in Penrith, was the Nepean Neonatal Intensive Care Unit Parents' Support, otherwise known as, "NNICUPS". Formed in 1992 by the mother of a premie baby born at 27 weeks, NNICUPS continues to grow, with the parents of premature babies joining this amazing organisation to help raise funds and awareness for the families who come through those doors. My first encounter with NNICUPS was Easter weekend. I was holding Carter. I remember sitting there thinking, "What the f**k am I going to do to brighten Easter for the older kids". We'd been at Nepean for a few weeks and, to be honest, I really thought Carter would have been transferred to Dubbo by now. We spent the little money we did have on a few Easter eggs for the kids, as well as a couple to leave next to Carter's crib, as the kids were so worried that the Easter bunny wouldn't find Carter.
John went to the NICU in the middle of the night to ensure that the Easter bunny would definitely find Carter. "NNICUPS left a bag of Easter chocolates next to all of the cribs in the NICU!" John explained when he came back to our room, showing me a photo he'd snapped of Carter's.
I couldn't believe that someone would think of us. Those bags of chocolates weren't really for Carter.. they were for all the parents who were missing out on their baby's first Easter.. for the parents who were missing out on Easter with their other children, or the usual family festivities they'd come to look forward to each year. Those chocolates were a reminder to all of us that our babies weren't just a bed number or a certain length gestation, they were babies that were spending their first Easter under horrible circumstances.. babies who may not even see another Easter. That night, I felt like someone was looking out for us.
When Carter was 68 days old, he got really sick. We weren't sure what was wrong with him, but in the space of an hour, he was having big drops in oxygen sats and taking a long time to come up, he went back on oxygen, and found himself back in the humidity crib in ICU. Cultures, gases, an NPA and an EEG - they didn't know what was wrong with Carter, but he was rapidly deteriorating. The morning he was moved back into intensive care, I had walked out of the bay and into the hall, breaking down in the middle of the walkway. I was so scared. I didn't know what was happening to my little boy and I had no idea if they'd be able to fix him.
As I pulled myself together, I saw one of the beautiful NNICUPS volunteers down the corridor. "Mel?" I said, walking towards the familiar face. I'd met Mel and her beautiful daughter the eve of Mother's Day, when they delivered some beautifully personalised chocolate bars for all the mamas in the unit, "Hey! What's wrong?!".
"Carter's sick. He's back on oxygen and they've moved him back to intensive care", I could barely control the shake in my voice. "Do you wana get out of here?" she said to me, "Let's go grab a coffee!" Mel and I sat at our little table in the private hospital cafe just chatting. No. Not just chatting.. LAUGHING! We laughed about how hilariously similar our daughters were and compared the length of time it took to hear all about their 'itchy' pants each morning. For an hour, I forgot about where my life was at that moment. We hurried back to the NICU to make it back for Carter's next set of cares. As we walked in, I was met by the nurse looking after Carter, "He's just having an EEG so we're going to push his care times back a little today". I walked into the bay and saw him with all these wires stuck to his tiny little head. I knew he wasn't in any pain, but the sight was a confronting one. During our coffee, I explained to Mel how I'd begun photographing everything that Carter is going through, "Not just to document it and be able to show him one day, but to cope through these tests and procedures that he has to go through and there's nothing I can do but watch". "Why don't you take a few photos", Mel said gently, knowing that I was having a hard time seeing him like this.
Finally, the EEG was done. The first piece of tape was pulled off, ripping Carter's hair out with it. It was the first time I'd really heard him cry. My heart was breaking and there was absolutely nothing I could do for him. Another piece of tape.. and another.. then another.
He was crying so hard that there was no longer any noise. I stood next to him with my hand on his belly, trying desperately to comfort him.
"STOP! JUST STOP! Just give us a minute!" I couldn't watch him cry like this any longer. I just needed them to give him a break.
Of all the horrible things he's been through, tape coming off his head should be a walk in the park, but it was the kick in the guts while we were down. He had been through so much, could we not just take a bit more time in removing all this tape?! My heart was so broken for him. My shirt soaked with tears. I'd forgotten that Mel had taken my camera so I could give my full attention to Carter.
He was finally tape free and had begun to settle again. I turned around to Mel and she handed me my camera, "I took some photos for you. I know it was a hard moment, but this is the stuff you'll wish you had photos of when you finally leave this place".
Mel's presence gave me hope, that things can improve. Mel's daughter was the reminder of how strong and resilient these little babies are.
Having the support of a mother who has been there before, a mother who knows that heart-wrenching feeling of being absolutely helpless, it was everything I needed that day. Mel and I had only briefly met once before this day, but the support she gave me was like I'd known her my entire life, like she knew exactly what I needed, when I needed it. This is what NNICUPS is about.
They provide a level of support that no one else can really give you, unless you've been there before. It's not just emotional support either, it's practical support too! NNICUPS are continuously raising money to help improve the unit and upgrade the equipment that kept our boy alive. They host fortnightly suppers for NICU families, and are regularly asking what they can do to help. Our entire experience would have been very different if we didn't have access to this incredible support network and the volunteers who selflessly give their time for parents who desperately need a bit of light in some pretty dark moments. Thank you to the beautiful hearts behind NNICUPS and to the wonderful doctors and nurses who ensure that parents know that they have this support. If you're a parent at Nepean NICU, and you need support - emotional.. practical.. or you just need a bloody break from the shit hole you've found yourself in?!.. get in touch with NNICUPS! They will be the lifeline that pulls you through some pretty shitty days, I promise! NNICUPS is a non-profit organisation, with money raised and donated going back into the babies and families of Nepean Neonatal Intensive Care Unit.
If you would like to donate to an organisation that gives their heart and soul to their cause, you can contact NNICUPS via email; NNICUPS@hotmail.com and you can also follow them on Facebook by clicking here!
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