The Parallel Story of Ellanor
HOW ONE LITTLE GIRL WAS VERY PERSISTENT
THE SHORT VERSION...
Ella's Picture Gallery
SOME OF OUR FAVOURITE PHOTOS
Spare A Thought
A COMMUNITY SERVICE ANNOUNCEMENT
THE SERVICE WE HELD IN 2004
THE STORY OF AN EARTH ANGEL
The Lowdown on Twisties
BALANCED TRANSLOCATIONS 101
You're Not Alone
How to help a loved one REQUESTED TIPS ON WHAT TO SAY (AND WHAT NOT TO SAY) TO A GRIEVING PARENT
Information For Friends
AN OPEN LETTER ABOUT INFERTILITY
A SELECTION OF SITES FULL OF SOUND ADVICE, SUGGESTIONS & COMFORT
Ella's Story -
Why 'ERW' Design?
My name is Kirrily. Together with my husband, Steve, we would like to share a little of our story with you.
ERW Design came about quite by accident. I was halfway through an eventful fifth pregnancy, after enduring four miscarriages, and had resigned from my office job early on this time to ensure I was as stress-free as possible!
I was in contact with an old client from my previous employment when the subject of her need for a website came up. Thinking Steve could assist, being very technically minded and possibly up for the challenge of creating this site, I nominated him! Aside from holding down a busy and demanding fulltime job, in hindsight it seemed more sensible to him that he should teach me the basics and encourage me to practice on this site. After all, my "dream" had been to raise our family at home with a business of my/our own - up to this point, though, we had not been successful in starting a family, and besides, I hadn't a clue what the business would be either!
So Steve and I set about creating a website for our first paying client. It was great because it filled my days while I carried around my very active and growing bump, and it also beat doing the temp office placements which had been coming less frequently.
That was in November 2003. Our little girl was due the following March. I assumed I would not only have plenty of time to complete this job, I might also be able to start the next project which came about at Christmas time, when I mentioned to someone in passing what I had been doing. I had visions of registering a business (at the time, we were going to call it WhatWorks, a play on our surname, for want of a better name), establishing myself and obtaining more work whilst tending to our baby daughter in her wakeful times.
Well, not only did Ellanor Ruby decide to come ten weeks early on January 13th weighing 1581g, she was born with a fairly rare congenital heart defect, diagnosed two weeks after she was born. Known as truncus arteriosus, it is basically a condition for which there is a solution, but these operations are life-long, life-threatening and not altogether successful when performed on premature babies.
The outlook was grim. But we held out hope, the future was not completely without its positives. Surely the cardiologists' warnings were all the worst case scenarios. After all, our precious girl had been so fighting fit in her first two weeks of life. She had a fiesty, determined, strong nature and everyone encouraged us with words of "little girls are fighters" and "she'll be fine, you'll be looking back on this time and saying 'why were we so worried'". Deep down, and keeping it to ourselves, Steve and I weren't so sure. But, as anyone who has experienced neonatal intensive care units knows, with the good spirits of the nurses and doctors, and other babies' happy stories around us, what more could we do than live each day as it came? All we could do now was watch over her as she neared a more stable size before they operated to correct her heart.
As I type this story, Ella's brightly coloured, crazy-faced, googly-eyed giraffe, "Raffi", looks down at me from his vantage point above my screen. He was a companion toy, bringing a bit of sunshine and colour to her 'cot'-side every day in an otherwise pretty dull, bland and depressing hospital ward - I look on him as being Ellanor's personal assistant. And he was always there with that stupid grin, no matter what the day would bring.
Ella continued to thrive on my expressed milk. She was gaining weight and very interactive with her mum and dad, gazing at us and following our voices, cooing and sucking her fingers when we sang and even getting into the habit of tucking up her little bottom for us when we changed her nappy - what a good helper!
In her third week, at 33 weeks 'gestation', Ella took a small turn for the worse. Her breathing, whilst always rapid since birth and alerting the doctors to the possibility of heart trouble, grew faster and she was working pretty hard. The decision was made to put her onto CPAP, assisting her with breathing via tubes blowing air just inside her nostrils. We were assured it wasn't necessarily a step backward, as it would allow her to concentrate more on growing and less on her respiration. She improved and stabilised, and for the next week she was comfortable.
The time for her operation was nearing. As she reached closer to the target weight of at least 2.2kg, Steve and I were increasingly apprehensive but still hopeful.
It was February 12th 2004, four weeks and two days after she was born, when Ella contracted a very sudden onset of NEC (necrotizing enterocolitis) while still in the hospital. Despite all efforts, just a few hours later she let go of her fight on life, free of pain and drugs and tubes and noise. Steve and I are so blessed that she visited us, albeit way too briefly, and we know the essence and energy that surrounded her and made her so familiar to us will now remain a part of our family, no matter how big it grows or how long it takes us to have more children.
So, to cut a very long story short ... Why ERW? They are Ellanor Ruby Whatman's initials, of course! This business, in reality, was realised only after, and because of, her life and death. I was fooling myself to think I could care for a baby AND a fledgling business! Although, given a choice between the two... of course I would swap my life for hers if I could.
In memory of our dear baby daughter, we have dedicated our new venture to her and by 'raising' it in place of raising Ella, we honour her daily. I feel a great sense of security working from home, somehow I am closer to her. She is our reason and reward for persevering to conceive our dream for five years so far; she has filled the void we both had in our hearts; and she is now the Chief Executive Officer - the Boss! - just as she would be if she was here in person.
Raffi, the PA, is tapping his hoof and checking his watch. Time to get back to work, he says.