The Big Tube Wean: Day 4

For the first time in Brenna’s life, I’m washing bibs on a daily basis.

And when you’ve never before gotten to do something as simple, as “typical,” as wash bibs for your 2-year-old, because she never needed to wear bibs before, you realize that washing bibs is a ritual that you’ve been craving. Washing bibs excites you.

We’re in the middle of Day Four of The Big Tube Wean, and it can best be described as “fair.”

Fair because we’ve had both exciting ups and frustrating downs, as expected.

Fair because breakfast has been a battle field, and it took me until today to realize that apparently she’s not going to be starving when she wakes up like a 3-month-old. I’d been trying to rush her straight to the kitchen table after she awoke and got changed, but she was having none of it. And maybe she just won’t be a big breakfast eater. Either way, breakfast has been tempting me to open a wine bottle this week.

Fair because Brenna rapidly lost weight the first two days, and we were beginning to really worry that we were approaching her weight loss maximum too quickly. Again, weight loss is something we expected, but that didn’t save me from a day of worry and frustration yesterday. Thankfully, we had a big celebration last night, when she was only down a tenth of a pound from the night before.

Fair because she is all over the place with the amounts she is consuming. Her feeding therapist encouraged us to try to get her 1 tablespoon of food at each eating opportunity (meals and snacks). The highlights have been a few meals where she ate close to 2 tablespoons of food.

Tombstone pizza – a favorite

But despite the slow successes and the weight loss, the overall stress of half-starving my child has been less than I imagined. Because fixing real food alongside with the rest of the family instead of mixing up formulas and blended food in a syringe has been nothing short of a dream.
To celebrate, I’ve been dressing Brenna in her new clothes – like an outfit that both tucks in AND zips up! She’s a sucker for a good vest, so she’s impressed too.

We’ll take these little successes, and we’ll hold on tight to them during the many times we feel like throwing the plate through the window. And we’ll keep praying for more bites. For slow weight loss. For patience and unwavering faith. And for the opportunity to keep washing bibs.

Comments

  1. Anonymous says

    Great news. I am glad it is not as frustrating as you thought. And what Boggs relative would not like to eat food!! Keep chugging along! Rosemary

  2. Anonymous says

    Love the new vest! Thanks for the update. Every time I sit down to eat with my kids I think of you all and say a little prayer that your mealtimes are going well!

  3. says

    Have you tried peanut butter yet unless she is allergic? This is what helped my son with CIE-nb gain weight. We have texture issues with some fruit and vegetables. The key is to keep trying foods and finding what she likes. Keep up the good work :)

  4. Anonymous says

    Great news. I am glad it is not as frustrating as you thought. And what Boggs relative would not like to eat food!! Keep chugging along! Rosemary

  5. Anonymous says

    Love the new vest! Thanks for the update. Every time I sit down to eat with my kids I think of you all and say a little prayer that your mealtimes are going well!

  6. says

    Have you tried peanut butter yet unless she is allergic? This is what helped my son with CIE-nb gain weight. We have texture issues with some fruit and vegetables. The key is to keep trying foods and finding what she likes. Keep up the good work :)

  7. Anonymous says

    I think you’re amazing.

    I see you having the “typical” fights with Brenna very soon over food. For example – “Eat 2 more bits and you can have a dessert”. Or, “finish your peas before you have ice cream”. And my favorite, “How do you know you don’t like it if you haven’t even tried it”.

    When you’re having those arguments, do you think you may even wish back for the tube feeding days where Brenna had no input on the great nutrients you were giving her?

    I have children your kids ages and all my friends have kids this age. Kids eating is stressful for everyone and as always your situation is exponentially harder. I have so much admiration for you. Keep it going!

  8. Anonymous says

    I think you’re amazing.

    I see you having the “typical” fights with Brenna very soon over food. For example – “Eat 2 more bits and you can have a dessert”. Or, “finish your peas before you have ice cream”. And my favorite, “How do you know you don’t like it if you haven’t even tried it”.

    When you’re having those arguments, do you think you may even wish back for the tube feeding days where Brenna had no input on the great nutrients you were giving her?

    I have children your kids ages and all my friends have kids this age. Kids eating is stressful for everyone and as always your situation is exponentially harder. I have so much admiration for you. Keep it going!

    • says

      We do have food out and offer her food pretty much all day. But she is still getting some tube feeds and also naps for 2 hours, so there aren’t as many opportunities to eat as you might think. Also, she eats more when we’re all eating together.

    • says

      We do have food out and offer her food pretty much all day. But she is still getting some tube feeds and also naps for 2 hours, so there aren’t as many opportunities to eat as you might think. Also, she eats more when we’re all eating together.

    • Anonymous says

      I admire you and your family so much. You always have a wonderful outlook and Brenna cannot get any cuter. I feel like every transition is so tough and then one day it feels like it’s been ages since it used to be the old way. My daughter has been refusing the high chair lately. She loves grazing out of a bowl on the ground. Her favorites are mushed up raspberries, blackberries, and blueberries….of course the messiest! The food out all day works for us too.

    • Anonymous says

      I admire you and your family so much. You always have a wonderful outlook and Brenna cannot get any cuter. I feel like every transition is so tough and then one day it feels like it’s been ages since it used to be the old way. My daughter has been refusing the high chair lately. She loves grazing out of a bowl on the ground. Her favorites are mushed up raspberries, blackberries, and blueberries….of course the messiest! The food out all day works for us too.

  9. says

    I think the one piece of relief with already having the feeding tube is that we can “supplement” anything into her diet…so if she eats great but won’t touch veggies, we can just blend some up and give them through the tube! :)

  10. says

    I think the one piece of relief with already having the feeding tube is that we can “supplement” anything into her diet…so if she eats great but won’t touch veggies, we can just blend some up and give them through the tube! :)

  11. Anonymous says

    My 2 year old would not eat breakfast either. As soon as she turned 3 breakfast was the first thing on her mind every morning! I love reading your blog. Brenna is so cute I just want to squeeze her!!

  12. Anonymous says

    My 2 year old would not eat breakfast either. As soon as she turned 3 breakfast was the first thing on her mind every morning! I love reading your blog. Brenna is so cute I just want to squeeze her!!

  13. says

    We did our tube wean on my daughter when she was almost two (and it did about drive me to drinking). Peer pressure worked wonders in the end. I was trying all the foods the feeding therapists suggested, when she reached over at dinner and ate some of her big sister’s Chinese food. Not super “healthy,” but we learned she will eat (or at least taste) what all the “big kids” or her friends are eating. She always had to feed herself and was super sensitive to textures (no purees or “slimey” foods). She is four now, and I won’t lie and say it still isn’t a struggle. However, she is tube free, eats table food and is gaining weight. Yes, she still drinks elecare from a bottle twice a day, but we did survive the great tube wean.

    • says

      I hope it helps! It can be isolating to have a child with special needs. I thought of you last night when we were at a birthday party. My daughter had a bite of a taco with meat and veggie (an achievement) and two pieces of chocolate cake. Yes, another example of “excellent nutrition” but she was just another kid shoveling down cake at a party. I would have laughed at you a year ago if you told me that she would eat like that. Yes, she looks different than the other kids, and her speech isn’t as clear, but she was eating cake and asking for more. I try to remember each day that the possibilities for the future are endless, even when the present is a struggle.

    • says

      I hope it helps! It can be isolating to have a child with special needs. I thought of you last night when we were at a birthday party. My daughter had a bite of a taco with meat and veggie (an achievement) and two pieces of chocolate cake. Yes, another example of “excellent nutrition” but she was just another kid shoveling down cake at a party. I would have laughed at you a year ago if you told me that she would eat like that. Yes, she looks different than the other kids, and her speech isn’t as clear, but she was eating cake and asking for more. I try to remember each day that the possibilities for the future are endless, even when the present is a struggle.

  14. says

    We did our tube wean on my daughter when she was almost two (and it did about drive me to drinking). Peer pressure worked wonders in the end. I was trying all the foods the feeding therapists suggested, when she reached over at dinner and ate some of her big sister’s Chinese food. Not super “healthy,” but we learned she will eat (or at least taste) what all the “big kids” or her friends are eating. She always had to feed herself and was super sensitive to textures (no purees or “slimey” foods). She is four now, and I won’t lie and say it still isn’t a struggle. However, she is tube free, eats table food and is gaining weight. Yes, she still drinks elecare from a bottle twice a day, but we did survive the great tube wean.

  15. Anonymous says

    I just stumbled across your blog today, and words cannot begin to described how much this post blessed my heart. I’m encouraged by your faith and your attitude towards life! My son is 6 months old… and we’ve been washing any where between 6-8 bibs a day (due to spit up problems). But you have encouraged me to be grateful for every little bib that I wash and to treasure the gift that God has given me. Thank you again for sharing your story!

  16. Anonymous says

    I just stumbled across your blog today, and words cannot begin to described how much this post blessed my heart. I’m encouraged by your faith and your attitude towards life! My son is 6 months old… and we’ve been washing any where between 6-8 bibs a day (due to spit up problems). But you have encouraged me to be grateful for every little bib that I wash and to treasure the gift that God has given me. Thank you again for sharing your story!

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