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Thankfully Lily arrived safe and went into the High Dependency Unit of St. Michael's B ward. On Thursday the doctors were saying that it might not be Edwards as her organs seemed fine. This of course was good news but it was a double edged sword. IF it was not Edwards, it was some other chromosome disorder, which meant that my husband or myself might be carriers. If we were carriers, then our other two girls might also be carriers. I think, even today, that that Thursday was the toughest day of this whole journey. I wished and wished that she would live & that they had it wrong but if that wish was to come true then it had far reaching consequences for our whole family. However all the wishing in the world would not change who Lily was. She was unique and special and to be with us for a very short time as on Friday 4th she was diagnosed with Edwards. The head cardiologist confirmed that Lily had the heart of an Edwards baby with an ASD and a VSD present. Once they were confident with the diagnosis they sent us back to Mayo General on Saturday the 5th to begin what they called 'comfort care'.

From Saturday 5th to Wednesday 16th of April we tried to get our heads around this disorder and what it entailed. They told us we had a few days with her. They told us she would have episodes of apnoeas. They told us she probably wouldn't get bigger as her digestive system probably wouldn't work. They told us she might not go home as she needed high flow oxygen. She proved them all wrong.

They couldn't tell us how long Lily would live really. No-one ever knows with this syndrome, as statistics tells us she should not have lived to birth. Everyday we thanked her for staying with us, for giving us time to get to know her and love her. We planned her funeral. We got family and friends to come and see her to say goodbye. We took hundreds of photos and hours of footage on a camcorder. Every night we kissed her goodbye as if it was the last time we'd see her alive. I would whisper to her to 'keep breathing'. And every morning she was wide awake waiting for me. Waiting for her cuddle, kisses, a chat and a massage! We also brought Lily's sisters in to see her. We felt this was so important for them to see her, to hold her and to form memories with her.

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