The next 21 days following Erin's transfer to Alder Hey were surreal. It is hard to describe my emotions as we dealt with the fact that our beautiful newborn baby had a congenital heart defect and required surgery in order to survive. She spent the first week of her life on medication to support her heart and you would never have known there was anything wrong with her. I treasure the memories that we have from this time and we really got to see her personality begin to shine through. We were able to feed her, change her nappies and bathe her and I almost felt like a proper mummy. She was incredibly brave and very expressive - always letting medical staff know when she didn't like what they were doing to her with a sideways look of disdain. After a slow start with feeding she began to really love her milk; guzzling it down as fast as she could. Her daddy and I were totally in love with her - she was absolutely the most perfect daughter. Of course, we were also apprehensive and worried about her heart surgery, scheduled for 16th November, when she would be 1 week old. However, neither of us ever anticipated or prepared for the fact that she may not make it. We had discussed consent with the doctors and the risk of the operation was explained as 2 - 5%. The thought that we may be leaving hospital and returning home without our little girl never crossed our minds.
The day of her operation will remain forever as one of the worst of my life. We were told it would last about 6 hours, but she was in theatre for 12 as there had been complications. That night Erin bled into her lungs and she needed to be put on an ECMO machine - a type of bypass. I am grateful to Ronald McDonald House for many reasons, but this night is one of the biggest reasons why. Thanks to them we were sleeping only 3 minutes from the ICU. When Erin experienced difficulties they phoned us and we were by her side within minutes, meaning we could give her a kiss before she underwent yet more surgery. We almost lost her that night.
The next 2 weeks were spent with Erin in ICU - she remained critically ill for the whole time and things were very different from the week before. Her chest remained open from the operation and she was attached to multiple machines. We were no longer able to hold or cuddle her and she was barely conscious. The moments when she opened her eyes were both lovely and horrible for me. Lovely because I had the opportunity to look into the deep blue of her beautiful eyes and reassure her that I was there for her always, but horrible because I was so concerned that she may be in pain. The staff on the ICU were wonderful, both to little Erin and to us, but I will save my thoughts about their kindness for another day.
Finally, after 22 days of incredible bravery, Erin passed away at 5pm on Thursday 1st December, 2011. She had experienced difficulties with her lungs over the previous 2 weeks and after further bleeding the doctors felt that there was nothing more that could be done for her. I held her in my arms as she took her last breath, totally devastated that my little girl who had filled me with such love and pride was being taken from me. The day that she was born changed me forever as I became a mummy and the day that she died changed me again. I can't fully explain the amount of love and pride I feel when I think of her. She will forever remain my gorgeous baby girl; no longer in my arms, but always in my heart.