Feeds by nasal tube

Things have progressed a little since Tuesday. Abigail is now on milk feeds only (breast milk supplemented by SMA) and is being given the full amount for a baby of her size by nasal-gastric tube. She doesn’t yet seem interested in suckling at all – nurses are trying to encourage this by giving her a dummy occasionally. This could be because the medication she’s on is making her drowsy; getting her milk via tube means she doesn’t have to ‘work’ for it and so she’s not encouraged to begin sucking; or that some more serious brain problem is preventing her sucking action from working. In the short term, this is the next big hurdle for Abigail – if she can feed on her own rather than by tube she will be a lot closer to coming home.

The ‘fitting’ and twitching seem to have really reduced in the last few days and externally have virtually stopped altogether. No one yet knows reasons for this or whether it has stopped – an MRI brain scan is being organised (possibly at King’s College Hospital in London) for a few weeks time which will check for structural abnormalities. If it’s clear it will be a big step forward but still wouldn’t completely rule out any problems later in life. The kidney and bowel deficiencies noted after Abby was born seem to have been overcome as she is passing waste OK now.