Our Girl

On Sunday it is the first anniversary of the passing of Evelyn. I want to tell you about her, I am ready.

Evelyn was born at 32 weeks weighing 2Ib 15oz. I got to see her briefly before she was rushed away to NICU. She was so cute and looked like a little old lady, Evelyn was a beautifully fitting name. I was sown up and moved to recovery. A nurse brought an iPad to me in recovery that showed Evelyn in her incubator. She was so tiny and I couldn’t wait to have feeling back to go and see her. 

She was a TOF, which stands for tracheal oesophageal fistula. Her oesophagus hadn’t detached from her trachea and she would urgently need surgery to detach the oesophagus and attach it correctly to her throat. At barely 3 days old Evelyn was taken for surgery to correct her defect. While in surgery a further complication was discovered - Evelyn’s right lung had grown on her oesophagus rather than her trachea. This was a lot to take in. TOFs are born 1 in every 4000 babies, but Evelyn’s condition was so rare that it had only been seen once in at least 10 years in the UK. What was more incredible was that had been 6 months previous in Manchester and our amazing consultant was the surgeon who’d dealt with that anomaly. The right lung was removed. At 3 days old (and not forgetting 8 weeks early) our tiny girl went through 5 and a half hours of surgery. She was incredible. 

Man she was feisty. She was strong and you’d know if she wasn’t happy. I know I’ve said this before but her spirit animal has to be an elephant. Graceful, cute and unbelievably strong and powerful. She hated baths, caused you no end of grief for cleaning her. She had long limbs and they were powerful. We’d often find she’d propelled herself the length of her incubator and cot. She even spent one entire day without oxygen support with only one lung! 

She was beautiful. A cute tuft of fair hair on her head and big, dark eyes. Long legs and arms. A smile that just melted you. She suited deep purple and dusky pink, and looked particularly cute in a red baby suit from Marks. Basically she suited everything we dressed her in and it was pointed out by several nurses that the girl had style.

I would spend all afternoon cuddling her. Skin on skin. Hours just passed by, breathing her in. Her smell was so soothing. I sang to her, read to her and just talked to her about the life we had ahead. She loved me and I loved her and I felt I belonged. She taught me about life and what was truly important. Love, for others and for yourself. Unconditional love. 

She was our hero, our inspiration and our love. She lives in our hearts forever. To have survived for 15 weeks with only one lung was actually remarkable. She was unique and fought till she couldn’t fight anymore. That’s when you understand true love. To be able to see that your child has had enough of fighting and say goodbye. She opened her eyes one last time to say goodbye to us, we cuddled and kissed her and sang to her the familiar songs as she fell asleep for the last time. Evelyn - our girl.