Audrey's First Call for Room Service

 Monday morning rounds brought a big surprise: the doctor who will be doing all of baby A's post-op procedures, the gastroenterologist Dr Manfredi, had a family emergency and is out of town until next Tuesday, so we won't be doing her dilation this week after all. We'll be waiting in the hospital until he gets back and proceed with the plan from there. In the meantime, Audrey's Boston surgeon (Dr. Jennings) encouraged me to let her try eating whatever she wants. His thought was that it would help her throat stay open to keep it used.

Hello, Room Service?  I'd like to place an order for... everything.

I got really excited and ordered dairy-free blueberry pancakes and chopped bacon and strawberries (both whole and pureed) for her. I chopped some of the strawberries up into tiny bites, likewise broke up the pancake into small bits, to give her some of everything to try. After a very long (1.5 hr) wait, during which she decided to participate in New York's Fashion Week by emptying her suitcase and trying everything on,

 

 the food finally arrived. It was so exciting to see her sitting down to her very first meal of food without needing to chew through a mesh bag! 

She took it very seriously (way overdue for morning nap by that time, as I had been unprepared for the food prep to take that long) and took her first bites very cautiously, but soon got into it more. 

 She liked the strawberries the best but gave the pancakes a genuine chance. 

 

She seemed to be doing so well with the chopped strawberries that I decided to see what she would do with a whole one. She took the berry, nibbled a tiny bite, chewed and swallowed, and then stuffed the whole thing in her mouth at once, chewed once and then swallowed. I knew what would happen next before it happened-- her throat is only about a half inch wide at the narrowest point, so the strawberry had to come back up. In true toddler fashion, she grabbed up one of the two big chunks and put it back in her mouth, chewed a little more and swallowed it right back down. Then she started working on a bunch of pieces of the pancake, (and wouldn't you know the feeding team came in right about this moment and was chatting with me and observing us doing this,) and then Audrey suddenly got this look on her face like "Oh crud. It's stuck. Wait for it...." bam, the stuck stuff had to come up again too. Me and my big ideas-- 

I blamed the blueberries for blocking up the works, but the feeding team said it is common for kids with EA TEF to have lots of trouble with bready foods. They were gently recommending that we go back to purees only (nothing too liquidy either, remember, she is not allowed to drink anything thinner than honey textures right now due to aspiration in her swallow study) and I could feel some unbidden desperation creeping into my attitude as I argued at how great she was doing on the chopped fruit, so they gently compromised on that as long as it's well chopped. Their thought was that they want to keep it a positive experience for her and not cause her to retch, which could bring back an oral aversion. She is doing well on learning to chew but is not quite there yet, so they want to give her more practice. They suggested that I go get her some dissolve-able snacks like the Gerber cereal stars to practice on, but unfortunately the hospital didn't have any so later that day I walked to the grocery store with a sweet friend who showed me the way, and Audrey now has a well stocked cupboard of dairy free and team-approved treats. 

(She is allergic to the protein in cow's milk, sometimes called casein.) This morning she enjoyed sampling all of her new treats for breakfast (especially the Gerber maple waffle wheels), and even asked for them by name, "treat!"
 

For lunch she happily sampled purees of meatballs, corn, squash, chicken noodle soup, strawberries, and apple cobbler. She got most interested in the meatballs, and insisted on taking the spoon from me after a few bites and giving it a whirl herself. That was so exciting and fun for both of us! There was meatball puree everywhere, but it was sticky enough that she got a lot on the spoon and into her mouth, I was so proud of her! She finished her meal off with a few puffed curls of veggie-flavored Pirate Booty (a salty snack similar to cheese curls but with no dairy). Then we got to have a couple of hours break from her tube feeds, and she and I went down to the garden and she got to crawl around-- she is loving pulling herself up right now, and has just started coming to a stand on her own and is practicing a few seconds without support, might not be long before those big first steps!-- and found something I'd never seen before, a little playground near the garden. Since she was free of tubes she actually got to slide down the slide! It totally made her day, and mine, as she laughed and laughed to go "1, 2, 3, wheeeee!"