Finally we made it to the ward. Not far physically - PBG ward which was right next door to ICU in the old Children's Hospital - but it was a massive step forward and I did finally start to relax a little and believe that I would bring her home eventually.
I'm not sure that anyone would be interested in a blow-by-blow account of the next few months. We continued to have some bad days but they were more than outweighed by the good. Emily had had no proper nutrition during her time in ICU - only maintenance fluids as she couldn't seem to tolerate even the tiniest amount of feed. There was a short foray into TPN but that was discontinued when there was a concern about infection. So she left ICU at barely over her birth weight despite now being around 20 weeks old. She looks so skinny in this picture with Josh. Look at her stick legs! And the bald patch on the side of her head where she had a line in after all her other veins gave up the ghost.
Feeding, putting some weight on, and sorting out her long-term drugs were the next goals. She was still in quite severe heart failure and this was likely to continue for some months at least, still couldn't suck so all her feeds went down the tube and we gradually increased from 10ml an hour to something more reasonable. The feed had so many additives to increase the calories that it was as thick as custard and couldn't be gravity fed. It had to be pumped or syringed via the tube. We were patient though and she gradually gained a little weight.
