A Girl and Her Tube: The Beginning of a Blended Diet

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)

You Say Goodbye and I Say Hello

The past two weeks have been filled with family time - family departures, family arrival, and family visits. 

Monday Oct 8th my brother, Scott, his wife, Amber, and their 3 kids Reagan (6), Garrett (5) and Everett (11 months) got on a plane to embark on their journey to move to Pretoria, South Africa.

I am very lucky to consider Scott and Amber not only part of my family but also very good friends. "Nothing makes the earth seem so spacious as to have friends at a distance: they make the latitudes and longitudes." (Henry David Thoreau) The Earth definitely feels a little bigger with them being so many miles away instead of just ten minutes and saying goodbye at the airport was hard and we will miss them a lot but we are excited about this wonderful opportunity they have to share God's love and grow themselves. 2+ years is a long time for us to go without seeing this Thomas family (even with the advanced technology we have with Skype and Google Talk) so we are really hoping that we get the chance to go to South Africa in the next year to visit them. The main thing holding us back is the approval of Stella's doctors that she is healthy enough to visit a 3rd world country (we've received one YES! so far but we have many more to go.) 

A few days after we said goodbye to the Thomas family we got to say hello to David's mom, Cathy, who came to visit for a few days. Stella loved seeing her Nana and spending some quality time doing some fun activities. We really appreciated that she brought some of the cooler Seattle weather with her and we were able to spend time together outside. 

We enjoyed getting together with Stella's Nana and her Aunt Laura for lunch

 We had a great day at the zoo

 Nana took Stella in the petting Zoo area and Stella loved to touch the goats.

We tried San Tan Brewery and Stella showed Nana how she likes to drink water and taste food (she loved to taste their cheese dip for their pretzels)

The weather was even nice enough to enjoy a morning hike at Usery Pass

It was such a blessing to have quality time to spend with each of these family members and to make some new memories since we don't get to see each other every day. Stella's life has definitely taught us to cherish the moments that we have with the people that we love and we are thankful to have these people in our lives - they are a few of the many people that helped us to get through the days we spent at Phoenix Children's Hospital and we are lucky to call them family.

A Day of Celebration

Today was an important day in the Sridharan household for two reasons:

1. Stella Grace Sridharan is 18 months old today

and 

2. David and I celebrated the day that began our family - today was our 5th wedding anniversary.

What a crazy, wonderful, emotional whirlwind the past 5 years have been for us! 

We always wanted to start a family after enjoying about 3-5 years of marriage and we imagined that we would have 2 kids back to back (or close to it.) We would worry about things like what to name our kids if we had boys or girls, what they would be like when they were teenagers, what types of family vacations we would go on...normal things like that. In our wildest dreams we never talked about if we had a special needs child or if we had a child with medical issues - we just assumed that nothing like that would happen to us. It's crazy to think that 1 out of 100 kids are born with a heart defect and there are so many families going through a similar situation to ours; I had never met someone with a child born with a CHD before Stella was born (or at least they weren't talking about it!) Now I would never wish that any child would have the issues that Stella has and if I'm being honest I would have to tell you that I wish that Stella didn't have ANY medical concerns. Having to endure our situation has caused strains on our marriage and on our relationships with everyone around us...but it has also brought us so much closer together. I love Stella so much just the way that she is and I am thankful for everything we have gone through because it has taught us so much about life, love, God, and everything that is truly important. But for Stella's sake I wish she could be "normal" because the road she's traveled and the road she still has ahead of her is not something a child should have to encounter. 

It's hard to believe that Stella is already 18 months old...although we have had some really LONG days the past year and a half; overall it has flown by. She already has such a big personality and I can see her stubbornness shine through (somedays I have to remind myself to be thankful that she is so strong-willed and stubborn because when she was fighting for her life it was those traits that kept her alive!) She has her moments but most of the time she is a very happy, social little girl-her doctors are amazed by her constant smile especially with everything she has been through. Stella has a long way to go to catch up with what a "normal" 18 month old is able to do but she is making a lot of progress and with her strong-willed personality it is evident that not many things are going to hold this little girl back!