Category: Ruby

Defined as “a medical condition from which there is no cure that will shorten a person’s life or where a child will not reach adulthood”.

The diagnosis given to your new born baby by paediatric professionals, what does it even mean? What do you do with that information? To then come home with your baby who is “life limited”

This one was pretty big for me, it took a long time for me to actually get my head around it. This term that was used so often to describe Ruby either in medical settings, or the copious forms that needed filling out. I think I used it for a long time as a way to not actually let myself fully realise what it meant for me, and for Ruby. I think it went hand in hand with the denial phase. To think about it meant I was thinking about how many days, months, years that I would actually get with Ruby, and this was a totally impossible thing to know or to even predict, it was an unknown.

Im not sure you ever feel at peace with having a life limited child, but as I thought about it more, and became more confident in myself and in Ruby and what her medical needs and limitations were, it helped in realising what this meant for us. Ruby was extremely medically complex and with every chest infection, seizure, bout of sickness , you always had deep in the back of your mind, would she get through it this time? Did she have enough strength this time?  With each hospital admission, would we get her back home with us again? This was an extremely hard thing to live with, but I never let it be at the forefront of my thoughts. I didn’t let it consume me. I had decided that that was of no benefit to me or to Ruby, and wasn’t a healthy way to live our lives. It made more sense to me to know Ruby inside-out, to know her every move, to be strong and confident and to be her advocate, to know the strength that Ruby had within her.

          

We had made a decision that we would live as “normal” a life as we could, as “normal” as a life with a medically complex life limited child can be. So yes we were always out and about, always in a coffee shop, out for walks, going to the beach, hotel stays, weeks away, we wanted Ruby to experience as much as she could in her life, a lot of which she was unable to comprehend unfortunately, but I truly believe a lot of it she did. The beach was one of her favourite places: the sound of the ocean, the wind in her face, the smell of the ocean, the calmness and joy it brought her will forever live in my heart. There were plenty of events cancelled along the way: trips away, Ezra’s first birthday party, every bank holiday we were sure to be in hospital. We spent three New Years in a row in hospital, but we had to be just like, whatever, there was no way I could let myself get annoyed about those things it was of no benefit to Ruby or us and was a battle that wasn’t worth it, it was what it was and I was ok with that, it was “our normal” and you know what I liked our normal, we knew no different. In order to function within the crazy world of having a complex needs child you had to go with it, learn what was worth fighting for and know what was a waste of energy. Don’t get me wrong there were plenty of times I was like not again, come on like give us a break for a minute. When we were in hospital that much you help yourself to the supplies you needed, make your own tea and toast, pretty much did the ward rounds and had a direct phone line you knew you were there far too much.

Should a parent have to think about what they would want at their child’s funeral? What that would look like? Make sure you would financially be ready for that; how is a human brain, a mother, ever suppose to comprehend that of their little one? To think about what the future would look like without their child in it. There was no way you could let these thoughts and feelings fill your everyday thinking, if I did I would not have been able to function on a basic level for Ruby, these things I tucked away at the back of my mind and only let them come out every now and then, otherwise they would have fully consumed me.

I got five precious years with Ruby,  and I will forever be thankful for those five years, but in turn I will forever be pissed that I didn’t get another five years. What I wouldn’t give to have that time all over again.

“Though she be but little she is fierce”

Lisa xx

 

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

 

 

There we stood in a world where we did not have a clue what was going on.  It was 3 weeks in and we were still in the neonatal unit living out of hospital, asking permission to touch our daughter and to change her nappy, scared we would do something wrong under the watchful eyes. This wasn’t how it was supposed to be, this wasn’t what we dreamed of,  our expectations were completely smashed. Our normal was going to be a new normal and we were completely petrified of what was ahead.

Continue reading “Diagnosis and Unknown”

Ruby Powell, born Sunday 11th of November 2012 at 1:50am weighting a big 8lb 12oz. She was full term 40+3 

I went to hospital a naive first time mummy in the throws of labour, no clue what to expect or what was ahead of us. 

I laboured and was considered a “low risk” pregnancy, everything seemed to be going ok with no concerns raised. I was labouring for a while so a doctor was called.  Ruby was delivered by vacuum delivery, and there seemed to be no reason for concern, from what we knew, everything seemed to be going to plan. 

Continue reading “Becoming a Mummy”