Black Friday

We have now spent 2 days in a hell like state - although life was not too much better previous to this. Lets go back to the beginning.
On the 19th November 2010, our beautiful baby Ava was born. 3 days later she was in intensive care fighting for her life. She had profound hypoglycaemia, caused by my breast feeding. She had been feeding for 2 days but only getting the colostrum which did not have enough calories in to sustain her. By the time my milk was through it was too late. The consultant explained that Ava had not made the switch from burning glucose for energy to burning fat for energy. This left her with 0 glucose in her body - only one other case like this had been seen in the north East ever!!!! Your brain needs glucose to function and as such her brain shut down and started to die. It is a miracle she is even alive today. I had nursed her all that first night we were home from hospital, on my chest - kangeroo care all night - this I believe had saved her life. Why did you not contact the hospital straight away I hear you ask? Well we did 3 times for advice because Ava stopped feeding at 8.30 that first night. The response was always the same - leave her a few hours and try again.
The midwife arrived late morning and as we attempted a bottle feed she had an apnea (when the baby goes blue). The ambulance was called and we were rushed to hospital. Within 30 mins she looked like the picture you see on my profile.
It is now 14 weeks later and Ava has reached lots of her milestones - rolling over, smiling, holding her head up. We were told she has permanent brain damage but what effect this will have for her future we don't know. The reason for this is that being a baby she had hardly begun to use her brain and there is a slim possibility that she can rewire her brain and use different areas for her skills.
However, in the last few weeks Ava has stopped gaining weight and her head circumference is now off the centile chart. The consultant told us this Friday that her brain is not developing at the rate it should be because of the sustained damage to the cortex which is further backed up by the fact that she doesn't hold your attention like a baby should. It is hard wired into all baby's to look into a persons eyes, Ava doesn't do this very often and then only holds your gaze for a few seconds. He told us that she is going to need a lot of support in the future, how bad it will be he can't say. He isn't saying she won't make mainstream school but he isn't saying she will either. Ava also has epilepsy and fits dozens of times a day, she is on medication for these but so far it isn't working.
I decided to write our journey together to help us through the dark days ahead. We have made it this far, we will continue to climb the mountain. On a positive Ava smiled, giggled and rolled over today.