bringing Ronnie home was something entirely different to the ‘norm’. To start we had a health visitor every other day who was always joined by a community nurse, every other day (Sundays included) they came and weighed Roo, they checked his oxygen levels and the updated his GP with every digit. These women became part of our family, Brandon had two extra aunties that helped with making breakfast and getting his uniform on for nursery, one would tie his shoe laces while checking SATS and the other would be making me tea while i showered. on the days in between my aunt, robs mum, my best mate, sisters, cousins all chipped in to help. a newborn will make you tired, a newborn with a heart defect will push you to limits you didn’t know you had. Ronnie slept in 30-40 minute intervals, his heart worked harder than anyone else, so burnt energy at a rate we struggled to understand, he was always hungry, always sick. crying wasn’t an option, it strained his heart, waiting a few extra minutes for food wasn’t an option, he really was starving. Weight gain was a huge deal for us, an ounce could make the difference between life or death. We didnt even realise how different our lives were though, or how tired we had become .. we adapted and accepted without a second thought, our son needed us to.
A few days before christmas 2013 we were admitted for an MRI at The Evelina childrens Hospital, its attached to St.Thoimas where Roo was born and its where we lived after his first surgery. Plans were being made for his second op, but we were given the green light to be home for christmas.
On February 24th 2014 we were admitted with a plan for surgery the next day, i stayed with Roo that night and Rob had to come back the next morning, he arrived at 7am and preps started. At 8pm that evening my little boy was still in surgery, he had needed a pulmonary artery transplant and they couldn’t stem the bleeding, everyone was there and yet i couldn’t tell you what anyone looked like that day. When he was finally wheeled back to PICU we discovered his chest was still open, all those hours of bypass had left his tiny little body too swollen to stitch back up. 7 days later he went back in to theatre to close his chest, they were unsuccessful with more complications, but they did manage to stop the bleed around his pulmonary artery. The days either side were filled with physio to get the gunk off his lungs, dialysis to drain fluid off and a million tests in between. Eventually his chest was able to be closed and we were letting him wake up, as he did it was clear he wasn’t right, Roo had suffered several strokes under sedation and couldn’t move the left side of his body, he was reliant on the ventilator and his oxygen levels were dropping constantly.
Wednesday 12th March 2014; Rob had been asked to show his face in the office, neither of us could agree on whether this was right to do or not but we were making headway right? So sitting in AMT on the ground floor of the Evelina, with my aunt for that 5 minutes break, a nurse comes down to me and tells me i need to be by my sons side, she didn’t know how long he had left and a consultant would be round to talk to me soon. For days id refused to speak to Doctors, i didn’t want to hear anything negative, i couldn’t hear the words ‘comfort care’ again, the pressure was building in my head and i wasn’t coping. Now not only did i HAVE to talk to them, i also had to tell Rob.
In that doctors office i felt like i was being read my rights, in a ‘these are your rights but the cuffs are going on anyway’ way. Ronnie’s kidneys were failing, his stomach had shut down, his heart was in no fit state to fight anymore and an infection had spread through his entire body. No spline, no immune system, no fight. He couldn’t breathe without a ventilator and his lungs were struggling – the outlook was ‘bleak’ .. a doctors words i still shiver at. To stand even a glimmer of a chance at fighting the infection, Roo needed to go back on the ventilator, this meant anesthetic, he was too weak for anesthetic. Potentially it could be months on a ventilator if he survived it going back in, and then it was more surgery, but what they could do to save all of his organs at that point .. even the doctor didn’t know.
This was the moment, this was the big one. We both knew the options in front of us were not really options. Our son was dying, he has severe brain damage and everything below his heart had given up and shut down. I felt every ounce of control i had start to leave me but we knew he deserved more than a hospital bed. Phone calls were made in a blur, people came .. my dad stormed around the hospital demanding a priest, we had him christened that night.
Thursday 13th March 2014; We met with a palliative care team, well Rob did, i mostly watched Ronnie like a hawk and drank stupid amounts of coffee. plans were made to move Roo to a hospice the next day, Demelza Hospice in Eltham had a space for us. Somewhere in between me avoiding all the professionals out surgeon collared Rob and told him the one thing that gets me through most days; “Ronnie was one in 6 billion, most babies with his diagnosis dont get to this stage in surgery (normally they are terminated before birth) This may not have panned out for Ronnie, but we have learnt from him, his little life wont be in vain”
Friday 14th March 2014; At around 3:30pm we were sat in the back of a children’s service ambulance, the traffic parted ways like the red sea as we blue lighted to the hospice – i wanted to get out and thank each and every car personally. We arrived to our family waiting for us in a room full of butterflies, we dressed Roo in little PJs and he waited for every single person to come in and say something before finally at 8:50pm i kissed my angel goodnight.
A couple of weeks ago i had to move for one of those ambulances, i hope i gave someone else the extra minutes needed, that someone gave us once.