We came home after dinner!
I had a meeting with our doctor and the dietitian and it was agreed that we were ready to take the show home. Jason and I were each feeding the boys alone successfully and as a complete family. We went over all trouble shooting scenarios and I feel confident about it. The main key is to stay the course and never change the therapy. If we can maintain the skills we've learned and Jax has a bad feed or a bad day, he will always come back up if we don't waver.
I had to bring Jax over to the outpatient feeding clinic (it's all connected to the hospital) to get his final discharge weight and use the scale we'll be using for future appointments. Mr Beefy weighed in at 23.6 lbs, so we know where we left off.
The doctor and dietitian told me to not weigh his food, but to only keep track of his fluid intake. I need to not obsess over every meal and just stay the course. Jax goes back for a full check up from the team in 2.5 weeks. I'm going on a weekend girl trip in a week and the docs coached me into letting go of the control and letting Jason have the reigns for a few days. I'm not allowed to ask for updates from each meal and only an update from the end of each day (meal wise). Oh my gosh, that will be hard!
This is the plan for at home:
Jax gets 3 meals and 2+ snacks. He needs to consume 18 oz of the high calorie milk + whatever food he can eat within the time limit (20 mins a meal, 10 mins each snack). He will get one can of Pediasure (his formula) through his tube at bedtime. We need to also try and get an additional 8oz of water into Jax through the day. This is our plan now until Jax's stomach can start handling a larger volume in one sitting. It seems like he'll be non-stop consuming fluid, but he only takes on average of 4oz during a meal, so that's why. His tummy should start showing progress of volume tolerance as we move forward. I mean, look what he did in 2 weeks!
We are not to work on textures and remain with smooth and puree food/fluid right now. The feeding team said Jax isn't like a baby working his way up with food textures. So we will go by their lead and coaching when we want to start working our way up the texture ladder.
I received a high calorie blenderized recipe booklet. I've made my grocery list and plan to pick up an immersion blender tomorrow. I will probably prepare a bunch of meals and freeze them to have as back up. *What are the best kind of freezing containers? I'd like individual meal sizes if possible.
Jax got one of Brady's yogurt smoothies and 5 bites of chocolate ice cream as his bedtime snack since that's what we had in the house. Tomorrow I'll give him yogurt and some stage 2 baby food to get by until I can blend up his meals.
Most of the meals are a main dish just blended with things like sour cream, whole milk, gravy or butter. It won't be "hard", but I need the ingredients, the blender and just a little bit of time.
It's always stressful coming home from the hospital with unpacking, sorting, dealing with prescriptions and new schedules. This time, the stress was simply getting settled back in, but more than anything... the schedule is SO CHANGED! Being gone longer than a week means tons of laundry, a house needing cleaning and a load of paperwork for work starring me in the face. It will all work itself out over the next few days I'm sure.
Jax only gets one tube-feeding a day at bedtime. While his meals will still be very therapeutic and take my or Jason's complete attention, it's still really AWESOME to think of Jax never having to run around with his backpack on again. It's mind blowing to be totally honest.
We are in the mix of the next step, and while it's a little hectic and will take some getting used to... we're actually in the game :)