On the 24th November 2015 our world shifted forever we became proud parents to our first baby a little girl but all was not as it seemed ...

After a traumatic three day labour which ended because of foetal distress in a emergency caesarean, proud Daddy Craig was handed our gorgeous bundle of joy, at this point I could only look on from the operating table in amazement. Lilian appeared to have lots of bubbles in her mouth,  and after a few moments was taken from Craig as doctors became concerned about her breathing, we both looked on in panic but were reassured when theatre staff said she was ok just needed some additional oxygen support, and she would be brought back to us as soon as they could, with this she was taken to the neonatal ward. I hadn't had chance to hold her or really even look at her, all I could think of was that I wanted to see her little feet and hold her. Later that evening after hours of waiting, we were still in recovery I had bled badly in theatre and had a drain in but all we could think about was where is our little baby. My mom who had been in the delivery room when the doctors rushed in and exclaimed there was no time to wait I needed a caesarean had not even glimpsed her granddaughter , no one had been allowed to see her. Finally five hours later a doctor came walking over to my bed, Craig and I held hands as we were told what they had found when trying to pass a nasal gastric tube ... our baby had no join from her oesophagus to her stomach instead all there was, was a pouch and to make matters more complicated she had a trachea oesophageal fistula (a join between the oesophagus and trachea) , our heads swam with the information that she was to be ventilated and transferred to a speciality bed in intensive care at the Children's Hospital and needed surgery as soon as possible. The moment she left we burst into tears , holding each other , asking 'why us', not knowing how to take it all in. I was given the option that night of staying down in recovery so that as my daughter was transferred into a specialist neonatal transfer unit I could glimpse her, it was the hardest two minutes of my life I had waited another 4 hours it was 2:00am and they pushed her in, she was in an incubater , I couldn't see her face because of all the tape and there were tubes everywhere. I didn't even get the option to hold her hand and that was it she was taken from me.

I spent the next two days in a blurr , yearning for my baby, Craig was dividing his time between me in one hospital in floods of tears and Lilian in another fighting for her life. She had the 'fix' operation at 17 hours old, I couldn't believe a baby so young could be so strong, the operation was a success and within three days she was off intensive care on the neonatal surgical ward, I remember asking the nurses who knew abit about these TOF/OA (for short) babies what the average length of stay following correction was, I was told a month. Lilian was discharged after 10 days! She was so tough, had such a little temper but it had come in handy, at day 7 when she had tried a bottle for the first time she had loved it and when finaly her feeding tube had come out it felt like such an achievement.

We finally got to take her home, she was placed onto medication for reflux something these children nearly always suffer from, and told we would see her miracle surgeon for a follow up soon. Unfortunately it wasn't going to be as simple as that , in her 13 weeks on this earth she has been admitted into hospital 4 more times, she has battled pneumonia, bronchitis, has had 3 respiratory arrests with me and her daddy having to perform CPR on her twice ,had three more anaesthetics and been diagnosed with another condition tracheomalacia often associated with her birth defect, 2 weeks ago today she underwent another life saving operation for this and is now back home where she belongs fighting fit. Who knows what the future will hold for our amazingly brave little TOFling these individuals see hell and back but they are so special and such little fighters. She will have more obstacles to overcome unfortunately the main one being eating which can be a tricky subject for the rest of her life, but we know she is destined for greatness and is so loved, I thank god for her every day.

During our stay in intensive care we were informed by a nurse of a website and Facebook support group, who could offer us and Lilian support and teach us all we needed to know. We both go on the TOF Facebook page ever day, it is amazing how supportive we find it, we get to talk to other parents of children like Lilian and even adults who have the defect , we learn more and more every day to help her, but they need our support. There is very little awareness and this can be challenging for example with GP practices and schools, we want to help raise money to help support the amazing people running this charity who are trying to help children like our amazing Lilian Grace, please help us.