So the word ‘home’ started to be thrown about. This scared us a lot and yet, on the other hand, is what we had been working so hard towards. I hadn’t been expecting it yet though. It had been thought that Ruby would be in hospital for 3 months and yet here we were, only 4 weeks in, and it seemed to be an option. Our goal of Christmas was possibly a reality, but would it happen and did we have as much confidence in ourselves as the professionals had in us? To take our little girl home, totally ng tube fed, on several medications, having seizures, risk of choking, aspiration, chest infections… the list went on. This was the scariest task put in front of us. I spent most of my time in total shock and slight denial that everything somehow would be ok. Was it hope?
I think a mother’s instinct somehow kicks in. I was so green to this new world we seemed to be entering into, and it scared the life out of me. I didn’t think I was strong enough. I have always battled anxiety and would worry to the extreme. So who thought it would be a good idea to give me, Lisa, a little girl who was going to need so much care and dedication, and bring so many new things into my life that would terrify me and add a whole new set of worries? I just could not understand this and still to this day don’t. But amongst my worry and anxiety I’m also a very stubborn and strong minded person. I had made a promise to Ruby that I would do everything for her, so coming home? Let’s do this.
A discharge meeting was arranged and all the professionals were in place to make bringing Ruby home possible. I sat like a scared kid with my notebook in hand and a list of questions… notebooks and lists were my life for the next 5 years. Present in that room were our paediatric consultant, dietitian, physio, community children’s nurse, discharge coordinator… the list goes on. These were the people that we needed to help us bring our baby girl home. What do most others experience when doing the same thing? A nervous daddy walking in with the carseat in hand, the new baby’s first outfit, a beautiful blanket and cute hat, taking their baby home in what should have been the happy “typical” way. As I sat in that room I couldn’t help but want this so much. But my reality was now so very different and as many people shared with me: “I was no longer going to Italy, my flight had changed to Holland, I had to buy a new guide book, learn a new language, and meet a whole new group of people who I would never have met before. Holland was a different place and less flashy, but I would soon see that it had windmills and tulips. Ref: Emily Kingsley”.
The 16th December 2012: the day was prepared and we were bringing Ruby home. Along with our “typical” carseat, going home outfit and blanket that granny had knit, we had bags of syringes, sterile water, spare ng tubes, dressings, tegraderm tape, PH strips, several medications, MR10 monitor, lists, notes and phone numbers for the paediatric ward. We bundled everything together including our precious girl and took the steps out of that neonatal unit into the unknown. Into the frightening world of having a life limited child and everything that brought. To say it was overwhelming & terrifying would be a huge understatement.
We drove home in silence, not a word. Ruby was asleep in her carseat, the click of the MR10 monitor going off with her every breath, a sound that would become so normal. We cautiously carried Ruby into our two up two down terrace and I set up in the kitchen what would become a permanent feeding station. I plugged in my double breast pump, which would earn its moneys worth over the next year. I settled on the sofa, lifted my precious girl out of her carseat and held her for the first time in the comfort of my own home, Ruby’s home, without the ever watchful eyes. This is where our real bonding would begin, the learning process of knowing what Ruby needed, knowing her seizures, knowing that she wasn’t in danger. Now started the 18 months of solid sleepless nights, nights filled with constant cerebral crying and us trying everything to ease our baby girls discomfort. We would welcome our first medical professional into our home the next morning, and these appointments would become overwhelming, but these people became my friends, the people I saw everyday, the people that I shared more with than my family and friends, the people that saw me in a complete broken mess. This was the start of something that would challenge everything within me. I had no idea what we were going to face and how long our journey would be, but I was in it and I was there for Ruby. Looking back on this now, not wanting to sound completely cheesy and cliche, but I am the person that I am today because of Ruby. She taught me how to feel & possess incredible love and strength.
Though she be but little she is fierce.
Lisa xx