Abby feeds from a bottle!

Nix continues to heal well despite a minor infection confirmed in her wound. She’s certainly relieved that her usual pre-natal insomnia seems to have gone and she can enjoy some better sleep at night – at least until Abigail comes home!

Last week after my update Abby’s condition seemed to plateau somewhat. Her overt external fitting and twitching had all but gone and she remained stable and monitored in her cot. Two things meant that we had a few ‘down’ days last week. The first was that of her feeding. Abigail's ability to suck and feed from a bottle was one of the big hurdles to her coming home from hospital and she just didn’t seem interested. She seemed to spend so much of the time asleep or very drowsy that she just wasn’t able to wake up enough to attempt sucking. Doctors were again unsure whether her drowsiness was the result of her medication or deeper problems. There was even concern from the medical staff that Abby’s actual sucking action may have been affected by the hypoxia (lack of oxygen in the womb) which would've meant that she might never suck or feed herself.

The second concern of ours was her eyes. Abby seemed to be opening her eyes quite a bit more (despite her drowsiness) but she often had involuntary and uncontrolled eye movements rolling into the back of her head. Obviously this was a very a visible sign of something not quite right and so it did concern us a great deal. Again, doctors seemed unsure as to whether it was her anti-convulsive medication or some level of brain damage.

The weekend brought much better news after the plateau of last week, though. On Saturday an extremely perseverant healthcare assistant managed to get Abby to finish about half of each of her first two feeds of the day from a bottle. This was fantastic news and meant that she clearly did have the sucking reflex there. Since then, she has been feeding from a bottle for some of her feeds every day and although the progress is often slow, it is at least a start.

Abigail does seem a bit more awake these last few days and is even making some tiny ‘normal’ baby noises. Although she still seems to have occasional involuntary eye movements, she does seem to be able to fix both eyes on something and focus as far as she’s able to at her age. Doctors have today undertaken an EEG brainwave scan which did pick up some small abnormal brain patterns that may be akin to very minor ‘fits’. This may well correspond to her eye movements.

The other good news of this week is that subsequent to the Monday ‘grand’ ward round, doctors decided that Abigail’s anti-convulsive medication would be stopped immediately. This is because of her improvement and the fact that she doesn’t appear to have fitted for about a week now. The medication will remain in her system for another week, so her effective dosage will not drop to zero instantly. Obviously, doctors will be monitoring Abby closely this next week to check for any abnormal activity again.

Abigail will undergo an extensive MRI brain scan tomorrow (Thursday) at 11am at Kings College Hospital in London. This is primarily to check for any structural abnormalities in the formation of the brain, but will not rule out any developmental problems even it the scan comes back perfectly clear. It will, of course, still be good news to know that her brain is all there! As one consultant put it to me: “An MRI will allow us to see that the brain is all there. It will not tell us if it’s all working.”

All in all, doctors continue to be pleased with Abigail's progress. In the short term, her next major hurdles are for her to really get the hang of bottle feeding so that she can be withdrawn from her tube, and that her MRI scan tomorrow is successful and clear. Rebekah and Joshua have both been able to see, talk to and cuddle Abby and are just as smitten with her as we are. Life is tiring travelling to the hospital once or twice a day but she is worth it, and whatever happens we are very grateful for the opportunity to care for such a beautiful little girl. I’ll endeavour to write another update in a few days after the initial MRI results.