Slowly the idea of going home started to be talked about. A social worker, outreach nurse, a dietician, the palliative team & a Jack & Jill co-ordinator came to see us. To say we were apprehensive was an understatement. We both felt that if Lily had a longer life in SCBU than at home, then, in SCBU was where we would stay. However, as the days passed & we had her 1st week birthday in the hospital we felt that quality was more important than quantity. We talked to the consultant and the brilliant nurses about what to do when/if she had an episode. We decided, with their professional opinions, that Lily would be given extra oxygen and a little rubbing to stimulate her but nothing else. We didn't want her to suffer and we didn't want to ventilate her, leaving the decision to us when to terminate her care. Lily, so far, had made her own decisions and had beaten the odds so we would let her decide when her time here was over.

Once we felt comfortable that we could cope with what our immediate future held, we left Mayo General on Lily's 2nd week birthday. What a special moment it was to get her home & celebrate her birthday with her sisters and extended family...