Tim and I were looking forward to the birth of our first child in July 2007. Jessie, however, had other plans and made a very unexpected entrance into the world on 2nd April at 25 (+6) weeks.
The three of us, our family and friends had a long journey ahead of us with many hurdles to overcome. Jessie weighed 1 lb 13 oz. She started life on ½ ml of expressed breast milk every hour. At two weeks old she underwent a heart operation to close a valve in her heart. She weighed less than 2 lbs but came through like the little fighter she was turning out to be!
She was continuing to grow, but the one area that didn't seem to be going according to plan was Jessie's lungs. We were told that we had to make a decision; Jessie needed to come off the ventilator before her already damaged lungs became worse. The steroids which were needed to help her were described as 'miracle drugs' but the downside was that they carried a high risk of Jessie developing cerebral palsy. At that point there was no decision to make; we would deal with the consequences if and when we needed to.
Twenty four hours after being given the steroids, Jessie had come off the ventilator. Over the next few weeks and months she continued to improve, with the odd set back, but on 17th July 2007 we were finally able to take our little girl home. She came home with chronic lung disease and had to be on home oxygen for five months, but it was far better than trekking to the hospital every day.
Our theory was that we had experienced the traumatic bit so the 'terrible twos' were going to be a breeze and she would be a wonderful teenager! Jessie is now a feisty three and a half year old diva who did 'terrible twos' spectacularly, so I'm not sure our 'teenager theory' is correct!
She has developed normally in every way except with her mobility. She was delayed in her movement and has spastic diplegia; a form of cerebral palsy, in her legs. Jessie has had to wear insoles, pedro boots and a splint on her left leg to try to stretch and strengthen her muscles. We don't know if it was Jessie's variable oxygen to the brain when she was on the ventilator or the steroids that have caused her cerebral palsy but, after everything our little star has been through, it is a small price to pay.
Jessie, Tim and I have had support from many sources including all the neonatal staff at the Leicester Royal Infirmary and the Leicester General Hospital. Jessie's Nanna heard about Steps and Jessie has been attending Steps sessions for two years, enjoying the incredibly wide range of activities. The staff at Steps, with their enthusiastic and encouraging approach, have been instrumental in developing Jessie's movement, confidence and independence. They design a specific programme of learning for every child's individual needs and provide a supportive, friendly environment for us all.
We now have a further addition to our family in Holly who, thankfully, came on time. All the staff at Steps have welcomed Holly and made us feel part of the Steps family.
Thank you so much to you all for supporting us so brilliantly through Jessie's journey.