Xavier's Story

Sunday 13th Sep

I’m gonna be a bit of an emotional mess for a minute but bear with me please – I hope it will be worth it.

I have a cause that is so close to my heart, that not many people in this chapter of our lives know too much about. Maybe because somewhere along the way it stopped being my story to tell, maybe because the pure fear and emotion of the time has eased - a little, maybe because I just didn’t think people would care because they’d heard it so many times, or they didn’t feel it the same way that those who were there with us did. I don’t know why honestly.
But this year, 16 years after the journey began, something in the universe has pulled me to share it again and to step back in to making a BIG difference, not just the small ones we’ve quietly continued doing on our own.

16 years ago I had a cheeky 2yr old and a very chunky 3week old. Noah & Xavier.
I was meant to return to work that day, while Xave stayed with Grandma, but instead Jase & Noah headed in without me as this absolutely indescribable feeling of instinct screamed at me internally to take my newborn baby to the hospital. He had been windy all night and unsettled, nothing unusual for a baby, but I just could not quiet this panicked voice screaming inside of me.
That instinct saved my baby’s life.
That day, the 13^th September 2010, our baby boy began the biggest fight for his life as we watched helplessly, begging and pleading for answers and for the universe to keep him with us, to give the doctors and later the surgeons the answers they needed to help him. We were eventually transferred from Caboolture Hospital to the Royal Children’s in Herston that first day. Following an ambulance with your baby in it, with lights blaring is a surreal feeling…
Over the next two days at RBCH Xavier was poked and prodded, xray’d and MRId, injected with dye, started bruising and swelling around his stomach before our very eyes, and yet time and time again we had absolutely no answers. Jase sobbed as he held him still for a Lumbar Puncture, something he still says to this day is the worst thing he has ever had to do. Xave wasn’t feeding, he wasn’t passing body fluids, he wasn’t even crying – despite the constant tests and needles. And somehow that was one of the worst parts, his little body didn’t have the energy to cry. Instead all that energy was being diverted to fight and keep himself alive. We were watching our little boy die and right then no one had any idea what to do. Those first few nights they set us up in a family room in the hospital, right down the hall from him. We slept briefly, simply from pure exhaustion.  
Two days later, on Wednesday the 15^th September, Jase had just left to drop Noah to daycare, which also happened to be where we both worked. I won’t even go into how unsupportive they were (we worked at a large daycare centre near the hospital) throughout everything, but it was with them that we learnt no matter how much we sacrifice for a job, to an employer we will always be dispensable. Jase had only just left when the team of doctors and surgeons came into the room. As I stood there stroking the bruising on my sweet babies belly, unable to make eye contact with them, they told me our little boy was dying and that they still had no answers or way to heal him. The last chance they had for answers was to perform explorative surgery, that afternoon, and they hoped that by seeing inside his little body first hand, they could find a way to save him. They told me to call back Jase and Noah, to call any other family and to have them come in as this was our only chance to have a goodbye as he may not make it through.
I remember holding the edge of his tiny crib, my knees wanting to give way, blinking back the tears, willing my then fiancé back to my side. Thinking how could I give them permission to cut open his perfect little body and leave it with a permanent scar if it wasn’t even guaranteed to save him. How could I say goodbye to this little boy who had already stolen so much of my heart. How was the world this unfair and what had he done to deserve this?! What had we done to cause this?!

I made that call, to Jase, to tell him to sign Noah back out, to both get back to the hospital asap, I choked as I told him we had to say goodbye, just in case. That I had just forced myself to sign the hardest forms I had ever signed in my life, still are.  

Together, we said our goodbyes, we dragged them out. I remember Noah being held over the crib to kiss Xavier’s head (the little Mahey Monkey Noah had bought him when he was born sitting above him like a guardian angel) and once he had kissed his head he shifted down and kissed a spot just above and to the right of Xave’s bellybutton. The nurses had helped me take little hand and foot prints in plaster…
It was then time to wheel him to the elevator and to the surgical floor, while still holding back the tears that had burned behind my eyes threatening to burst free all morning. Holding Jase’s hand as we looked at our baby, willing him to keep fighting and to stay strong like we knew he was. We held him before they took him in. Smelt him, drank in every inch of his little body and felt his warmth. We poured every ounce of strength that we had into him before handing back. They carefully gave us time to reluctantly hand him back, promising to leave Mahey there with him when we couldn’t be there. That monkey is still here today. He watched over our baby for us when we couldn’t and somehow that made such a silly little difference to us.  I remember them wheeling our baby away as we stepped back into the elevator, the doors closing and I fell. I fell into Jase and everything I had fought to keep inside poured out. He had already been my rock for 6years by then, and I honestly still don’t know how he had the strength to continue to be what I needed right then while feeling the same way I did...

They had told us they expected surgery to last for a few hours. If it was too quick it meant they had found an issue that couldn’t be fixed and there was no hope. Too long and it meant complications. We sat up in the family room, staring out at the world passing below us in the gardens beside the EKKA that had recently been. An event and scene that held so many fond memories for us, including our engagement 3yrs earlier, where the view was reversed from the one we had then. I remember watching the few clouds float through the blue sky, seeing the jacaranda blossoms drift slowly to the ground, watching mothers pushing prams, families walking together, cars driving by. Thinking none of it was fair. Feeling so jealous of them in that moment. He went in around 1pm. Night had fallen when they came to find us…

They’re first words were the reassurance that he had made it out, he was in NICU. The relief was phenomenal. During the surgery they discovered Xavier had a rare birth defect, a hole in his mesentery wall (The tissues that hold your intestines etc in place). His bowels and intestines had fallen into this hole and had tied themselves into a knot, herniating and in turn necrotising – dying. He was literally dying from the inside out. They had removed all of this necrotic bowel, and went on to explain that he could survive with 80 percent of this section missing – Xavier had lost in the very high 70s. They went on to tell us that they had not performed surgery we would be waking up to a very different tomorrow. A tomorrow where it would have continued necrotising and our baby would have passed through the night. He had a new little accessory, well two to be precise. Two little rosebuds that created a double barrelled stoma, which would require him to have a stoma bag to receive his waste and to feed him through, until they felt he was strong enough to try a reversal. We got to go to him. His stomas were exactly where Noah had kissed him earlier that morning….

For the next few days we watched him grow stronger, until we could hold him again, and the joy and warmth that coursed through me when I finally held our sweet boy again was such a rush. In the meantime we learnt Stoma care. That was, interesting. I will never forget the feeling of the bag popping and warm orange liquid oozing all over my side, or the smell of the stoma powder and antiseptic wipes we used at least 10 times a day to clean the area when we had to replace the bags because they would become unstuck. We became Stoma care experts in a matter of days. But slowly we found a new routine, one that looked very different to how we imagined settling in as a family of four.
Jase and Noah moved in to Ronald McDonald House Herston, Xave and I moved into a little share room in Surf Ward, where I had my portable bed/armchair beside his giant cot. I pumped myself dry day and night to carefully syringe feed back into his stoma every few hours so we could get him strong. I swapped stories and desserts with the other mums in our room, each of us  sharing the triumphs, the tears and the heartache of our little ones. We watched families come and go around us, some together, some with empty arms and broken hearts. We saw miracles and life’s double edged sword all at the same time, when one teenage life was lost and led to a babies life being saved through the gift of organ donation.
We felt the love and strength of our family and friends as they visited, fed us and kept us sane. Our first family photo was when Jase was sitting holding Xave and Noah was climbing over the chair around them, we realised we didn’t yet have a photo together so I jumped in and we got a selfie, you can see the pure exhaustion mixed with happiness in our faces and the chaos. It was so far from perfect, but it was us.

It wasn’t all smooth sailing from there though, and the journey was only part way through. Eventually the nurses were able to convince me to spend some nights with Jase and Noah at Ronald McDonald House, complete with a direct phone line to the nurse station. It was a 20+ minute walk through the women’s hospital and up the street, or a very windy, hilly walk around the back streets of the hospital with about a gazillion stairs. One night we had friends arrange to visit and cook us a proper meal. Xave had been stable and I was secretly looking forward to trying to feel somewhat normal. I remember we had just gotten to the street that Ronnie’s was on and were about 3 minutes from the door when my phone rang. I knew before I answered that something was wrong…

What I forgot to mention was that Xave had a PICC line. It went in the crook of his arm and led directly to his heart, it helped feed him TPN (Total Parenteral Nutrition) to thrive and delivered medicines & antibiotics. It was an efficient way to prevent so many extra needles and give him the best chance of getting strong. With it however came increased risk of infection and because it led straight to the main vein near his heart we had to be so careful. This night Xave spiked a temperature and they believed it was due to an infection in his PICC line and asked me to return immediately to sign forms for urgent testing. When I tell you I have never run so fast in my life I am not exaggerating. I turned to Jase, told him I had to go and I ran. Up those gazillion steps, around the hills and to the back entry where the nurses had said they would meet me to let me in the emergency exit door. It was the most exhausting shortcut in my life. It was then my turn to hold my baby while he had his second Lumbar Puncture. This time I cried for him.
We managed to get the infection under control with minimal setbacks to his recovery, but from that moment I was so nervous to leave the hospital and his side again for fear of anything else going wrong.

Work was asking when I would return, Jase had already returned. Partly to get some normal routine back for Noah but also we still had rent to pay, bills to pay and even Ronnie’s came at a small cost. It was the hardest thing for him to leave each day to go look after other people’s healthy babies while his lay in a hospital bed unsure of when we could take him home. I am so grateful to him for the sacrifices he made so I could stay by Xavier’s side every single day.  Noah stayed with me several days a week, entertaining everyone, or being entertained himself by the clown doctors and the therapy dogs or musicians. He kept our spirits high with his chubby grin, cheeky antics and happy personality. He would lay in with Xave and play with his mobile and toys we had brought from home. Playing with Mahey and ‘reading’ him stories. He was never much of a talker but with Xave he would just chatter away or sing nonsense songs while his baby brother looked up adoringly at him with his darkest of brown eyes, stark contrast to Noah’s piercing blue. It was never how I envisioned them forming their bond but it was what got us through those hardest days.

A few weeks after surgery we had the hospital newspaper come round and ask if they could do a story on him, complete with photos. It was the perfect time to pop some clothes on him and of course his superman outfit was the clear choice. He had always been our little Superman, our hero. We were also lucky enough to have a beautiful photographer come in, thanks to some friends who had reached out, to take some adorable Christmas themed photos of him in a little knitted stocking with a matching knitted hat.  It was the little things that helped give hope and that we remember most. The smells, even now the smell of hospital soap takes me right back there. That was my bodywash, shampoo, my everything lol
The sounds became soothing, the wardies and nurses became friends, the constant early morning routine and rhythm that became reassuring in a way. The corridors that were once a maze became a well worn path, scattered with so many faces, some familiar, some new. Some that stayed for a long time, others for just a fleeting day or two. What’s hardest to describe though is the profound understanding between parents, the smiles that could tell you exactly how their day was without a word to go with it - sometimes cheery, other times exhausted or stopped at the edges with worry, the gentle nod of empathy or the reassuring squeeze of an arm as you passed by without a word, the quiet exchange of books, or even snacks as we learnt each other’s favourites. Those walls see so much heartache, you hear it in the sigh of the walls as you pass by, in the silence of the elevators, in the steady hum of the halls. And I can tell you tears were shed for more than just our own children on many occasions. I call them our hospital family, because that is what they became. The only other people that we felt who could understand our pain, our silly little triumphs, our exhaustion and sometimes even our desperation. The ones who felt the longing for the outside, felt the loneliness of the inside and who we came to trust to watch our babies in those instances we just needed a breath of fresh air. My heart broke for those that had no choice but to leave their baby’s each day for whatever reason and return as soon as they could of an evening for a visit. But you can bet that we loved on their babies for them while they were gone.

Years ago I started writing out Xavier’s Brave Journey. It began as a way for me to release the pain and emotion I felt inside. It was cathartic. It was healing. It took me years to finally begin to write out the first 4 days (up to the day after his surgery), and I was so exhausted that I couldn’t keep going. The emotions, and the small details, of these parts of this journey I’ve not shared. And even though they seem so insignificant they also feel so important, as though parts of the story have always been missing. I never felt that I ever gave justice to the full experience that living in a hospital with a sick child deserved. I still don’t but finally writing out these emotions, reliving them, I feel that it deserves to be shared. People need to understand that there is so much more to it than having a sick kid. 

For years afterwards we fundraised every year. For Ronald McDonald House. For Royal Children’s Hospital. For B105 Christmas appeal (we even had Xave’s story shared). We donated to McHappy Day and participated in events. Over 6 or 7 years we raised nearly $25,000 ourselves. We were invited back to appeal days and thanked the people who helped our boy survive. I even had an old school friend contact me a few years later and ask me advice as their new baby was presenting with symptoms they remembered me describing in my stories. I advocated, I told them exactly what tests they needed to ask for, what to demand of the doctors and to not let them dismiss their concerns. They thanked me weeks later. Their son had very similar to Xave and they requested the tests I had advised that led to his diagnosis. That thanks made it worth it. It made every minute of re-living it and sharing it so publicly worth it.
Slowly the yearly shares slowed, the gratitude and the memories still resurfaced, but we stopped reliving it so publicly. We oddly mourned the demolition of the original Children’s Hospital that for a little while had become our second home. Xave even gets phantom bellyaches this time of year, with no clear cause but to us it’s become an inside joke.
This year though was different. This year I woke today and that pull was there. Then I opened facebook and an ad that I had seen a few times popped up, but this time with it come a story, and it was only when reading that story that I realised exactly what the ad was for. It wasn’t just some random event. It was a fundraiser for the new Children’s Hospital Foundation and Ronald McDonald House South East Qld. We’ve been to this hospital with Xavier many times, for his CMT, and his anaphylaxis and his checkups. It didn’t hold the same pull that the original had, it didn’t hold the memory of our Journey, but it does tell the story of so many others since it’s inception. And those children, those families, those stories deserve to have the same chances that we did. The chance to have a happy ending.

This year Jase and I will be participating in ‘All Night Long’ a 21km (or 41km for the extra keen) walk around Brisbane on the night of October 24^th to raise money to support sick kids and their families and to give them every chance possible to find their way back home.

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