Lily continued to vomit for the rest of the day so the GP suggested reducing feed down to 5mls an hour and she would call again the next day (Tuesday). It felt like such a small amount going from 20mls to 5mls but her poor body just could no longer tolerate the milk.

Tuesday the 20th is a day I won't forget. I woke up in the morning thinking my beautiful baby had bad reflux and went to bed that night knowing that her digestive system had shut down. When the GP and palliative care nurse called at 3pm Lily had become very weak from all the vomiting. It was decided that we stop her feed and give her dioralyte instead. This would be much easier on her system and still keep her hydrated. Our outreach nurse called that evening and I then realised that this was not a temporary plan. She gentle informed me that Lily's little body was slowly shutting down and that we could have just a few hours. Lily was prescribed Oramorph for any pain she may have and Midazlom to relax her. We knew this day was coming but I don't think you can ever be prepared for it. My first instinct was to get out of the kitchen we had lived in for 5 weeks and move into the living room. Our families were called and that night was the beginning of the long sleep over!

We decided to get professional photos taken the next day. It was her 7 week birthday. Those photos will give me such comfort for years to come.