Update on Lily

Lily has had her full heart operation. She had it about a week ago. I didn't want to write anything as there was a critical period of 3 days. Fingers crossed she is out of that now. The doctors were happy with her and she has been moved from Great Ormond Street Hospital to our local hospital, James Paget. She is still not feeding, but hopefully that will get sorted soon. Lily wasn't supposed to have her Op until 3 months from now when she had put on enough weight. However, because she was not feeding, her heart was racing and she needed help to breathe they decided to do part of the op last week (I think partly as an exploratory as they were unsure what was causing her heart to race etc; (they thought it was something other than the holes in her heart causing these) However, they did not find anything unexpected and decided to do the whole op. They now feel her symptoms which they were confused about, were her reaction to the holes in the heart. It was awful not knowing what was the matter and knowing that nobody else, including the staff knew what was the matter.

The last few weeks have been so hard. It is hard being away whilst this has been happening. Even though she has had the Op me and Tim are still cutting Australia out so we will be home earlier than expected. (Although we don't know exactly when that will be). The reason we were coming to Oz was to do the Bibbulmun track and we would have been out of contact whilst doing that. I don't want to be uncontactable at this time so we will come back another year and do it.