Abigail comes home

It’s been over a week since our last update when we received the dreadful news about Abigail’s prognosis. As a family we have very much been in grief and shock for Abby and her future, although ironically she has otherwise continued to flourish and grow despite her problems. Contrary to doctors’ initial expectations, she’s now completely off all medication and her feeding also improves daily. She is gaining weight well and is now around 7lb 11oz, up from her birth weight of 6lb 14oz.

At the beginning of this week Abby’s feeding tube was removed and she's been feeding very well from a bottle and her sucking reflex is certainly there now. Today’s brilliant news was that Nix, the children and I today collected Abby from hospital where she was discharged from Special Care. She has spent this afternoon and evening with us as a family and it’s a great feeling to have her home at last after nearly a month in hospital. This evening Nix gave Abigail her first proper bath and Rebekah and Joshua have been absolutely lovely with her and dote on her all the time.

SCBU nurses have suggested that Abigail should now be taken off her strict four-hourly feed pattern and switched to feeding on demand which could be interesting as she still doesn’t really make much noise and has yet to cry properly. Tomorrow or Monday we are hoping to take her for her first walk in the country.

The next few days, weeks and months could well be the easiest as far as her caring needs are concerned, but we have been promised all the necessary support, back-up and resources necessary by the hospital, paediatricians and the community healthcare professionals. It still remains to be seen the actual extent to which her brain damage will affect her, although we have been told that doctors fully expect her to be very severely affected in many ways. Nix and I are resolute though, that we are by definition able to provide her with the best possible care, and Becky and Josh will certainly be a large part of that as they stimulate and relate to their new baby sister. We have decided that for the moment we will not be telling the children anything specific about Abby’s condition, especially since we are in no position to give any definite certainties about what may happen. We are also very aware of ‘labelling’ Abigail, even for her own brother and sister – we’d rather they know her simply as Abby and not have any preconceived ideas.

We are both convinced that our best course of action for these first few months is to treat and care for Abby as a ‘normal’ baby and deal with any issues as they arise. To that end we will be seeking to offer her, Joshua and Rebekah as rich and as wholesome an experience of life as we are able.