August 27

Will is having a little bit of a rough time. He's been getting an upset tummy a lot, gassy and frequent dirty diapers. We're not certain if it's normal preemie fussiness, gas, or a reaction to the increased calorie milk preparation or something I ate that came out in the breastmilk but he's been increasingly restless and grunty the last couple days, tensing his arms, bearing down and straining like he needs to go to the bathroom and curling into a ball. They're switching which type of additive is mixed into the breastmilk and giving him Mylicon drops for gas to see if that helps. He's been somewhat hesitant to nipple feeds today too, and making little noises that he's uncomfortable. Poor little guy. He's only happy for stretches of time when he's being held and rocked, I felt horrible leaving him fussing today.

We spoke to the charge nurse again today and I gave her a list I'd made of Will's care regarding diaper changes, oxygen level, bottle feeding etc. When we spoke yesterday she asked me to write out what he does best with for those things so I made a bullet style list and she agreed with it, so it will be posted in his room and in his chart, and each new nurse will be required to read it and abide by it unless there is a compelling reason not to. It's all simple, straight forward stuff like feeding him first then doing diaper changes when he's already awake and fussing to be fed so he doesn't waste his eating energy on throwing a fit, and using the same type of nipple for all feeds. I also spoke to the doctor today, but there wasn't much significant development from that. We decided if Will pulls out his feeding tube or needs it changed that we'll leave it out until he needs to be gavaged again. So far the standard practice is to immediately replace it whether he needs it just then or not, I'm running on a theory that having the tube in his throat may impede some nippling ability based on something my father mentioned about throat irritation, so it's worth trying how he does without it. Not likely enough to merit removing the tube since removing and replacing it is a little traumatic, but if it's out anyway we have permission to leave it out and he can try nippling feeds without it until he fails to nipple a complete feed when it will be replaced. So I guess that can be viewed as progress. We're trying to organize a care conference (meeting of all types of personnel involved in his care) for Wednesday.