Day #3

We left the house at 6:50am and got in the parking lot of the hospital at exactly 7:45am and were there before most of the staff arrived. There was NO traffic this morning. That was a nice way to start the day. Cameron had to be woken up this morning, but Evan was awake at 5:30am because he peed out his diaper and was cold. Poor kid tried to fall asleep in the car, which would have been perfect, but the sun was just too bright and there was too much to see riding in the car so he never managed to doze off. I’ve already warned the feeding team that he will probably collapse in a sleepy pile when they put him in the highchair for lunch at 11:30am.

This morning’s arrival in the clinic was great because the check in nurse was running late and we were told to skip the weigh-in until later in the day, so this gave the boys about an hour of playtime before we started their breakfast sessions at 9am. I was surprised that they did this, because no one checked their temperatures this morning until the weigh-in, but thankfully I know that neither had a fever this morning. At breakfast sessions I observed only Evan because Cameron was in a different room not adjacent to us.

Evan refused his milk formula, yogurt, and scrambled eggs. He did entertain the idea of Rice Krispies cereal by picking up one dry grain of the cereal, lift it to his mouth, open his mouth like he was about to pop the grain in and eat it. But at the last second he let the grain drop from his fingers and went back to playing. Like Cameron, Evan’s feeding protocol (which I will have a copy of posted today, though I expect it will be pretty much the same as Cameron‘s) allows him to have any toys he wants throughout the feeding process to use as a distraction and a soothing method.

Cameron refused his milk formula, but did take 4 bites of yogurt from the spoon held by the therapist, though he made a face indicating that he didn’t really care for it. He also nibbled on a fruit loop cereal, though I don’t know if he actually ate one whole loop or just took a nibble. Either way I’m happy with that. Cameron was also offered his first French Toast sticks today and while he didn’t eat any, they did get positive reactions from him because he voluntarily touched the sticks and even let the therapist put one to his lips to kiss it.

One of the first surreal things about this whole experience is observing the boys through a one-way mirror. Often the boys will look at the mirror and you would SWEAR that they are looking directly at your eyes. It’s creepy. I know they can’t see or hear me, and I try very hard to not let them see me throughout the day, making sure I always peak around corners just in case the kids are in the hallway being transported to an activity, or if the playroom door is open with someone passing through and they might catch a glimpse of me. When we arrive as long as they see their toys in the playroom the could care less what happens to me and don’t ever ask about me throughout the day.

The other surreal thing is to meet other parents of the kids in the program and more specifically sit in a small dark room watching our kids through the mirrors and listening (because it‘s impossible in such a small space not to hear what is being discussed) to what the issues and treatments are for their tube fed kids. I have not met many yet, but am certain I will over the next six weeks get to know them. There are about 10 kids in the program right now, all of them are tube fed somehow and in varying degrees and with different conditions. There is a list in the kitchen that is visible through the door window that has all the kids allergies for the staff to be aware of. Some kids lists are frighteningly long and specific. I know at least one kid is a transplant patient, one has an unidentified mystery swallowing problem, one is autistic, and that’s about all I know. We are the only twins, the only ones with more than one kid in the program at the same time right now (though I think they have had siblings in the program together but not twins). I don’t look for the info on the kids but it’s not possible to not know some things through passing in close proximity. Hopefully we will make some friends, and at least so far I have met three parents who are happy with their child’s progress.

Edit Update: I did get a copy of Evan's feeding protocol, and it's pretty much just like Cameron's with just a few changes.