Tuesday, June 30, 2015

Tube Wean, Day 8

Today was our last full day with Heidi; she leaves tomorrow morning after breakfast. I'm sad to have her leave, but I know we'll be ok without her. I've put together a big list of puree-type foods that we can try, so that she doesn't get bored with the same old things until she gets better at chewing and swallowing solids.

For example, I found this recipe for "French-style soft scrambled eggs", which is eggs with milk and butter made in a sauce pan, stirred constantly so that there are very few chunks. I tried it this morning and it was a success! for once in my Pinterest life, ha ha! It was like I had blended up some scrambled eggs. They were very smooth and creamy. And Elsie ate some! She wasn't too sure about it at first, but willingly tried some, and then when we added some ketchup, she ate even more.

Then at lunch, we mashed up 1/4 of an avocado with some hummus, and we spread it on crackers with cheese. She ate several tablespoons of the spread, and then ate another tablespoon or so of just avocado. And I have discovered that blending up a cup of applesauce with a few peaches made the ordinary applesauce much more interesting to taste. So we are branching out from our original "safe" foods of peanut butter, cream cheese, and ice cream.

Speaking of peanut butter and cream cheese, we weighed Elsie again today. When we weighed her on Sunday, she was down about 5-6% of her weight, which is understandable. But we didn't want her to drop below 10% of her pre-wean weight. When we weighed her today, she was only down 6 ounces from her pre-wean weight. 6 ounces! Do you understand what this means? It means that while she did lose weight initially, she is gaining it back. Elsie is GAINING weight, strictly by what she is swallowing! As Elsie has increased her calories and volume orally, we cut back on the amount she gets via tube. The last time we gave her anything by tube was Sunday night. So since Sunday, she has gained weight by eating with her own mouth. Honestly, both Heidi and I were so surprised. We weighed her 4 or 5 times to make sure we measured her correctly, but it was the same each time. Elsie has GAINED weight. By eating. No tube. It's unbelievable.

Of course, her weight will fluctuate, as everyone's does, but as her eating skills continue to improve, as they already have in such a short time, she will be able to eat more and more, and will gain more and more weight. And soon, we'll be able to consider permanently removing the gtube from her stomach. This is not a decision that we would make lightly. Our feeding team plus pediatrician plus myself and Clayton would have to all agree together that she was ready to have it taken out. Once it's out, there's no going back, so we'd have to be 100% certain that she is ready. So she doesn't need tube feedings at the moment, but we'll keep the tube in for the time being to be sure she doesn't need it.

I am so stinkin' thrilled that I am even talking about taking out her tube! I can't believe this whole wean is actually happening. Hooray for Elsie!


  1. I can't even read this without crying -- I am SO thrilled that our little sweet pea
    is gaining weight by eating! This is so awesome!

  2. I am sitting her sobbing- Elsie gained weight by eating! So so excited!