It has been an exciting week for Stella with some big changes!
Today she had a neurology appointment and it went really well (we haven't noticed any seizures so her meds seem to be working and her doctor is really pleased with her development.) She weighed 19 lbs and 11 ounces at her appt today (which was an increase since she saw the neurologist last in September, but she has lost 4 ounces since her pediatrician appointment on Oct 5.) On Monday of this week we started our transition to a homemade blended diet for Stella instead of formula and I am hoping that by getting real food she will start to gain weight and stay on her curve.
I have been talking about switching to a blended diet since May/June and have spent quite a bit of time looking into it and talking to people about it. My mother-in-law got us a vitamix blender and it arrived Monday so I finally decided it was time to just go for it!! I will be including a lot of details in this post and upcoming posts about "A Girl and her Tube" to help me keep a record of what we are doing and to help people who are interested in gtube feedings, blended diets, etc to have something to reference.
Since I began hearing about a blended diet I thought it was the best option to give Stella real food like a normal child instead of having a 1 year old rely solely on formula. I received a lot of information about why blended but was completely overwhelmed with the how. Now it seems easy- just blend whatever a normal child that age would eat and put it through her tube...but many doctors are against blended with tube fed kids because there is so much importance placed on the amount of calories given at each feed and the volume given each day. In order to get the doctors and nutritionists on board we had to have a plan showing that we would be giving a well-balanced diet in which Stella continues to get the amount of calories (or more) each day that she is getting from formula and that it is delivered in the same amount of volume. On top of this there is not one or even two go-to starting recipes that you should follow when you transition to blended. (It makes sense because every child has different dietary needs and/or allergies and one thing will not work for all kids.) All of these factors made it really difficult for me to decide what I thought would be best for Stella and how to go about it.
I finally came to a "conclusion" this past weekend and created a starting point that would be easy enough for us to transition as we learn what is working and what we should differently. We began a few months ago by giving Stella small amounts of various foods through her gtube before starting her formula (doing a single food for a few days to rule out any allergies.) Once we tried all of the foods that I could think of I was at a complete standstill about how to move forward. I have the Homemade Blended Formula that I got from Marsha Dunn Klein (one of Stella's therapists that we went to see in Tucson about oral aversion) and it has been somewhat helpful. I say somewhat because I had in my head that I needed to read through the whole handbook before I would be prepared to start a blended diet (procrastination/stalling!) and that it would give me a step-by-step route on how to do this. Again, there is not a right way for everyone when it comes to blended...but I am also figuring out that there is not a WRONG way either!
I did a lot of research and found a sample recipe that another family uses for a 2 year old who needs the same amount of calories and fluid volume that Stella needs daily. This sample stood out to me because it wasn't a consistent blend that was the same day after day and included everything in one blend (milk+fruit+veggie+milk+rice all blended together = something disgusting that I would never want to eat) instead this family does a "breakfast" blend with cereal, milk, and fruit, and then a "dinner" blend with protein, veggies, rice and milk. One of the important factors to me was that Stella's blend actually taste good because our ultimate goal is to get her eating by mouth and I don't want to offer her something that would make me vomit.
My plan of action was to replace half her calories with the breakfast blend for 3 days and give her formula for the other half, then try the dinner blend for 3 days with half formula to make sure that her body tolerates both new types of food. So far we have done 3 days of the breakfast blend (1 cup cereal, 1 cup fruit, 1 cup milk, 2 tbsp oil, and spices) and 1 day of the dinner blend (1/2 cup rice, 1 cup veggies, 2 oz protein, 1 cup milk, 2 tbsp oil, and spices.) SHE IS DOING GREAT WITH BOTH BLENDS SO FAR!! She is still vomiting occasionally but she throws up more on her formula feeds that she is still getting. After 2 more days on half the dinner blend and half the formula we will try to go to a full blended diet where she will get 2 feedings of the breakfast blend in the morning time and 2 feedings of the dinner blend in the afternoon.
We still have a lot to figure out with the blended diet but I am really glad that we finally made the decision to give Stella real food through her tube. I will continue to blog about the progress she is making, the things that are successful with the blended diet we are doing, and the adjustments that we learn to make along the way and I hope that when someone is at the overwhelming phase of not knowing how to start the process that my trial and error can help them.
These are some of the websites that I found helpful in my quest.
You Start With A Tube (Sacha's sample recipe is the one I adapted for us)
Ainsley Rae blog (this mom has videos that were helpful)
Food For Tubies (Great forum with lots of questions/topics)
No comments:
Post a Comment