One of the things that was most heartbreaking was when Kai woke up, after essentially a month in a continuous seizure coma, was that he'd lost a lot of his skills.
He can't hold his head up anymore, he wasn't holding on to us when we held him, he stopped tracking with his eyes and he'd lost his suck. That last one was particularly heartbreaking for me, because it meant we were no longer breastfeeding. Kai's swallow is good, but his suck is uncoordinated at best. It's hard, because we used to use the dummy as a soothing tool, it worked like a magic trick! Now he pushes out the dummy as if it's the most distasteful thing ever.
I am pumping, so he's getting some breastmilk, but because I've been so stressed and we've been in so many different wards and had no routine my supply dropped. Dramatically dropped. I manage maybe half of his feeds now.
I'm so torn up about so many things - with no suck, he's unlikely to be able to eat, and we take such pleasure from food. From eating. A lot of our social life revolves around it. Thinking of quality of life, how will Kai manage? Will his life be less because he may not be able to eat? That all his feeds will be put down a tube?
And then there's the abrupt end to our breastfeeding time. Nursing was such a joy for me, they were the easy feeds of the day - no meds, just Kai and me. I was able to soothe him with the boob, and I'd relax into it. I loved breastfeeding him. Highlights of my day, a little segment of normal.
Now we don't even bottle feed. We try sometimes, but mostly he toys with the teat. We aspirate what we can from his stomach contents to check the tube is still in his belly, and then we hook him up to the feeding pump, hit a few buttons and away it whirls, beeping when finished. It couldn't be a more different feeding scenario.
Even worse is the (completely unnecessary, totally irrational) guilt about having to supplement with formula. I know it's best for him, that I'd never deprive my baby of food if he was hungry, but for me, I have a baby with a rubbish immune system. We know this. We know a cold can put him in intensive care. Feeding him breastmilk means he's getting in part, whatever small immunity I've picked up.
This is a tiny tiny edge, but I'm clinging to it as long as possible, and the guilt that I'm depriving my baby of a possible advantage because my body isn't cooperating is overwhelming.
I get on with it, because we're in hospice and we need to. But that doesn't mean I'm not sad, and guilty and trying desperately to increase my supply.
Instead, I'm doing my very best to appreciate what Kai can do. That he refound his voice, and has a very loud strong cry (healthy baby cry, sick babies are silent). That he so clearly enjoys physio and baby massage. That he found his smile for the first time (break my heart into a million pieces, I'm so happy he smiles), and he still responds to my terrible singing.
Small things get us through. Swings and roundabouts. Faith and fortitude.