Evie's Last Step--A Tubie Journey

Hi friends,

Evie is 6 years old and has had a feeding tube all her life. Yesterday was the first day ever that she had no formula put through her g-tube.  

At 5 weeks old, we broke out of the NICU (finally!) after getting a g-tube placed in her stomach so that she could gain weight at home. We started from using an overnight feeding pump and feeds every 3 hours on Pediasure formula, and praying she wouldn't spit up or set off her pump alarm overnight.  

We then figured out how to space out the feeds to transition from a NICU schedule to a real-life schedule.  

We then dealt with feeding aversion, with Evie turning away or crying when offered the bottle. As she got older, she accepted a little food by mouth, but not enough to sustain her. 

I furiously searched Facebook groups and read articles, trying to figure out how to help her leave the tubie life.  

We switched from Pediasure to Real Food Blends to let her body get used to less milkshakes and more real food. This was a huge step for her.  I think that was the scariest step--completely changing what was going into her body.  But it was worth it--her development took off after that, both cognitively and physically. 

We switched to blending her food and using a syringe to push food in through her feeding tube, and said goodbye to the pump.  She had years of feeding therapy, making baby steps in this marathon. 

After years of feeding therapy, and patience for her own timeline, she has been eating 3 meals and 2 snacks a day by mouth, and just getting supplemental formula.  Everyone agrees she is close. 

With a heads up to our feeding team, and unwavering support from our feeding therapist, we reached out to the Growing Independent Eaters (GIE) team online, and they have helped us with a plan to take the final step.  They affirmed our feeling that Evie is SO close to eating, and just needs the last push so that she will recognize hunger cues and own her independent eating.  (Side note--before GIE started, the only other programs available were long hospital stays in other parts of the country, or a famous program in Germany for several weeks, for thousands and thousands of dollars.)

As soon as school let out for the holidays, we had agreed on a schedule and a plan. When Evie says "All Done," we won't push her, and will focus on the fun of eating and spending time with us at the table.  We will point out how yummy her apple chicken blend and her cranberry sauce is, and present options.  And when she insists she is done, we will steel ourselves to say ok, and trust that she will eat like any other young person and have peaks and valleys of appetite.  

We won't see any changes (except maybe crankiness?) for 7-10 days.  Step 1 is no formula and increase water intake, and offer food every 2-3 hours.  Step 2 is no tube at all, except to maintain hydration and reduce constipation.  

For you technical parents out there, her current tube schedule has been in total:

• 5 oz Real Food blends
• 1-2 ounces Pediasure Grow and Gain
• 10 oz water

Our new Step 1 schedule is:

Breakfast

Morning Snack, then 60 ml water

Lunch

Afternoon snack, then 60 ml water

Dinner, then 90 ml water

Before bedtime snack

Bedtime, 90 ml water

I feel like we are on a precipice of a good thing, but the next few weeks will be a journey. Here are some FAQ's: 

How can you help? 

You can ask how we are feeling about the journey, what Evie's favorite food or snack is, or any other upbeat question  you can think of.  Unhelpful questions would be about whether she has lost weight or how much is she eating.  Telling her to eat all of her food is the opposite of what we are supposed to do right now. We are supposed to focus on the emotional part of food for her, to help her feel safe and willing to try other parts of eating.  You can help us focus on the fun as well, by asking her what her favorite ice cream flavors are, or what's her favorite snack/dinner food. 

How long will this take? 

We don't know. It's kind of up to Evie. But Step 1 is likely going to be 1-2 months, at best guess.  And then Step 2 also depends on how she does through cold season and whether she is drinking by mouth enough to stay hydrated (this is going to be a struggle).  It could be another year until she has the feeding tube removed. Usually the doctors like to make sure that it's a sustainable wean. Wouldn't that be a great Christmas present for 2021?

How did the last 2 days go?

Day 1 went smoothly! Just a little cranky in the morning, and then was more enthusiastic about snack time.  Day 2 was interesting--she kept asking for more breakfast and has been really happy about snack time. I'm getting good at blending peanut butter chocolate smoothies! 

Thanks for your encouragement and prayers for our journey.  Cheers for Evie are welcome! (Just don't tell her to eat all her food. :P She will eventually, and I can't wait to take her to McDonalds for whatever she wants someday!)