"The Hardest Baby" - Does She Get a Certificate For That?

We were sent home on NEDS (Neonatal Early Discharge Service) on November 12th. Frankie was 38 weeks old and still had a feeding tube. Nevertheless we were assured that within a few weeks, she'd just 'take off' or 'turn a corner' or some other transport related analogy. Heck, the NEDS lady even showed us reviews from other parents, singing the praises of the program. Pages and pages and pages of reviews. We were convinced. Staring at the walls of our house sure sounded better than staring at the walls of the special care unit while Frankie learned to feed. So off we went.

Every 2 days, nurses visited the house. They weighed Frankie, watched her try and feed, wrote copious notes then left returning again in two days time to repeat the process. All the while, nothing changed. Nothing got better. Frankie continued to fuss around feeding. When I got sick of Frankie having a go at a breast feed on some days and screaming at my boob on others, I gave up breast feeding, convinced it was me she didn't like. Expressed breast milk in a bottle though seemed to have the same effect. Frankie went from screaming at a breast to screaming at a bottle. After six weeks of having us record our every feed attempt, ph level, wee, poo and more, and them writing copious notes but doing not much else, we were referred to a long-term feeding tube program. They had given up on us. Give up on Frankie. Accepted that she just wasn't going to feed. And I was heart broken.

'Long-term' and 'feeding tube' are not four words you want to hear put together. Especially when you'd read the reviews of countless parents who raved about how their baby had been weaned from the tube within a week of being home.

As the NEDS nurse left our house for the final time, she looked genuinely sad that she hadn't been able to help us. I'm still not convinced though that she wasn't just sad she didn't get a good review out of us. Her parting words of wisdom were, "Of the 150 babies I've managed, Frankie has been the hardest." Great, thanks for that. Does she get a participation certificate at the very least?