Tube Weaning - Day 10

To say that the last 10 days has been a roller coaster ride is a major understatement. The last week has definitely been the most stressful we've had since our NICU days. We've no doubt got more bumps ahead of us, but the progress Max has made in the last couple of days has been nothing short of astounding.

We've had some major up and down moments since Max began eating, as was to be expected. This is whole new territory for him and he's learning to eat much in the way that a 6 month old would do when first encountering solids. In a matter of days he's had to grow from someone who's never eaten before in his life to someone who MUST EAT to satisfy this strange, instinctual thing called hunger that he's feeling for the first time. It must have been beyond strange and confusing for him to learn the connection between hunger and eating.

I am proud to say that he has accomplished this, and more than we could have imagined. Currently he's only eating about 1/4 of the calories he needs, but considering he's only been eating for 3.5 days we think he's doing pretty great. Now that he's started eating he is being supported with tube feeds to provide him with 20% of his usual calories and 60% of his usual fluids until he begins to gain weight. He hasn't lost too much weight yet so we have some time before we need to worry about him eating more.

Currently we're riding the wave of answering any food whim Max may have. Currently his loves are graham crackers (he's had about a dozen of them today), globs of peanut butter, and chocolate. Not exactly what you might consider 'first foods', but tube fed kids rarely wean onto purees. He's also tried hummus, crackers, rice rusks, sweet potato fries, breaded veggie mock-chicken, homemade nutella, peanut butter cookies, apple, pancakes, orange, carrot, parsnip - all to varying success. He keeps coming back to his trusty graham crackers though. It's almost otherworldly to watch him take a big bite, chew, swallow, and go back for more like he's been doing this forever. The first graham cracker he ate on day 7 took him 2 hours to get through. Today I watched him blow through two of them in 15 minutes. This is the same kid that 2 weeks ago would gag and throw up on a grain of rice. We just sit and stare at him most of the day in slack-jawed wonder. More than a few tears have graced our faces.

We've got a long way to go in terms of getting enough volume, calories, variety, fluids, etc, into him - but for right now we're riding the high of having an eater. Our kid eats. With his mouth. It's just amazing.