First day(s) at home

All I remember about the afternoon we came home from the hospital for the first time is that I was lost between the meds and milk and pump and jejunostomy and sterilizing and measuring and calculating. I remember standing at the kitchen countertop, barely spending any quality time with my now 7-months old new-born. It felt like I was with her only to work on her - train her to suck and eat, check the tubes for leakage, change her, turn her, do the physiotherapy exercises; what did I forget? I have always forgotten something. Or ran out of time to do it. Because meds were top priority. Ten times per day at the beginning. Between 6am and midnight.

It all felt like it would never get any easier. Let alone that it would end.

There was no room for mistakes. And yet, in the middle of the night, with eyes half shut (or half open for you optimists), it was impossible not to miss something. Sometimes I would forget to open the clip on the tube. Milk would flow until the pressure burst the clip open and spilled it all out on her and soaked her bed. I stopped counting how many times I had to change her and the crib in the dark, clean the tubes, bottles and set up a whole new continuous feed*. Our whole schedule for feed-training for the next day - collapsed.

It took me weeks to gain the confidence to open capsules, shake out the powder into a syringe, hold fingers in the right places for it all not to blow into my face (literally!), add water, but not too much as she couldn't suck nor swallow...

Little to say I was overwhelmed. But there was no time to stop and dwell. I was / am head-through-the-wall kind of person.

CONTINUOUS FEEDING - milk dripping slowly, over the span of few hours