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Monday, February 17, 2014

Goodbye George? Day One of The Big Tube Wean

A couple of weeks ago, we were put on hold after days of planning and preparation to begin a tube wean after Brenna's skin tested positive for strep and the arthritis in her hands was at its worst. There was a lot of pain, not much sleep and we knew we would be set up for failure to try to cut off her food supply at that time.

In a way, I'm glad that we held off - not simply from a health standpoint for her, but from a personal standpoint. Now, I am less nervous. Now, I feel really ready.

I am looking ahead, and I am feeling hopeful. The thoughts of the stress of this experience and the intense adjustment that this is going to bring for all of us are being trumped by the thoughts of Brenna eating. Thoughts of us eating together as a family. Thoughts of us traveling this summer without coolers full of blended foods. Thoughts of Brenna wearing adorable clothes that don't have snaps for access to her tummy. In fact, I even went out and bought a couple of sleepers that zip up and outfits that tuck in, to celebrate.

Today brings a culmination of all of those thoughts of both stress and celebration to the surface. Today is the first day of…

Brenna's Big Tube Wean

Brenna has been pretty much tube-dependent since her g-tube surgery in August 2012. Everyone always asks why she doesn't eat. And I wish we knew. My theory is that it all started because she has dairy intolerances that we didn't really know about at that time, and it was making her feel sick so she didn't want to eat. She also may have had terrible reflux or become averse to the taste of the medicines she was taking. Who knows. Eventually, we had to have the g-tube placed…and that brought on a lot more vomiting as we struggled with the amount to give her and how fast and what formula her tummy would tolerate.

And who wants to eat when they're throwing up?

Then eventually, she lost those eating skills, and she lost interest in eating because she has been so stuffed full every day from the tube. At this point, she doesn't really know that taking bites, chewing and swallowing are something you do to relieve the feeling of hunger. I think right now she just likes the way things taste. When she feels hungry, she points to her tube, like "fill me up, Mommy!"

But today, that's changing. Everyone keeps noting that we can always go back if this wean isn't successful - which I fully realize - but I don't want to go back. I want this to be the beginning of oral eating that just continues to get better until she is eating everything herself that her body needs. I want to tell George the Feeding Pump that he's been a reliable gentleman during this process, but he's no longer welcome around here.

And so today, we cut back on her tube feeds, to make her feel hungry and therefore to make her eat.

Brenna had been getting three feedings of blended food at mealtimes (we blend up meat, bread, fruits, veggies, oil, etc. to give through her tube), and 3 feedings of formula while she sleeps (morning, nap and night.) She loves to taste foods, and she has a lot of interest in eating, which is a great starting point.

Starting today, she is being allowed to wake up hungry. After attempts at eating breakfast, we will feed her half of her normal morning amount through her tube. Then she won't get another tube feeding until after dinner…so her tube meals are being cut in half, and she'll be able to feel hungry almost all day. 

For a child who has only taken about 15 bites of food at a time by mouth, this is going to be an enormous adjustment. She will be really cranky, she will be tired, and we're closely monitoring her for hydration and for weight loss. We have a weight loss limit that I pray we don't see too quickly in this process because the girl can lose weight like nobody's business.

We've been stocking up on snacks and preparing Brenna-friendly dishes. She loves meats, so I have sausage and taco meat at the ready, pizza is on hand of course (her favorite), and I made her favorite bolognese sauce too. And we've got some dairy-free foods to try out too, because we're still hesitant to give her much dairy (she's only had some bites of foods with dairy products in them, like cheese, and tolerated those well).

To be honest, I have no idea how she's ever going to eat enough to grow on her own, because the amount of food/calories she takes in is almost unbelievable... But then I look around at these other children with HI, and they're doing it. They're eating and drinking like crazy…and so I try to have faith.  And the beauty of already having the g-tube means that we can supplement as needed to ensure she continues to grow and stay hydrated and take medicine. 

Prayers are appreciated… prayers that the transition from tube-feeding to eating orally goes as smoothly and successfully as possible. I know you'll be rooting us on and celebrating each bite with us. This week has the potential to be a rough one in our house, for everyone. I have some posts already planned that share some other things that have been on my heart lately, and hopefully I'll also get several chances to update about The Big Tube Wean.

And I'm hoping that very soon I will be able to show you photos of Brenna with food all over her face after a big meal! :)


  1. Good luck!! I have an 11 year old that is allergic to dairy. Whey, casein, and the milk made great choices in dairy free foods. You might try Daiya cheese if you can find it. My kiddo loves it! You have your hands full, but from following you for quite some time, if any mom can do can!! Can't wait to hear how she does without George being so involved in her life!!

  2. Such a great little lady!!

  3. Prayers for Breanna! I wanted to let you know I mentioned you on my blog today as one of the blogs I read daily! :)

  4. If you have the Daiya brand non dairy cheese at your store they seem to look and taste better than go veggie in my opinion. We make pizza for my son with Daiya shreds and while it definitely isn't the same as real mozzarella it's not bad! Praying for Brenna.

  5. At least we know she has taste buds. Everybody loves Doritos! Lol I know this feels huge. I hope it goes more smoothly than you antiicipate. I can't imagine knowing that she doesn't really "get it" that she needs to eat to stop the hunger. And hunger definitely makes people cranky. So glad you have the green light to try this now. Good luck, Mama!

  6. You can do it, Brenna!!

  7. Good luck !! Lots of prayers for patience and success headed your way. And I hope that the steps forward are met with minimal ones backwards. It is a hard transition, and one that literally holds your daughter's life in the balance. And I think kinda like walking, until that little mind decides this is what she wants... pushing George out the door will have to be her doing :)

  8. I just found your blog. Our son is 8 years old who has a genetic disorder. He still has a g-tube. He will sometimes smell something I'm cooking and say it smells good. I'll stop and say, "Do you want to try some, honey?" He'll just say, "No thanks, Mom." He will eat some things by mouth, but very little. It hurts me so much to not see him eat. His specialist just continue to encourage us to try and get him to eat as we're able. He had a feeding therapist also. For some reason,he loves milkshakes from this one place in town, so we are constantly going there and getting him those. He is thin, but other than that, is very active and social.

    I send our love and blessings your way today.

  9. Hi! I just found your blog.
    Our son is 8 yrs. old and has had a g tube since age 2. He has a rare, genetic disorder. At times, I will be cooking and he'll say, "That smells good." I'll stop and ask, "Do you want to try it, honey?" But he just says, "No thank you, Mom." It breaks my heart. There are a few things he will eat a few bites of. He also loves a milkshake from a certain place here in town, so we are always going through their drive's the only thing he will take by mouth during the day at times. He is thin, but other than that, he is very active and happy. His specialist knows how hard it has been to try and get him to eat, and he has had a feeding therapist. He (our son) will say that food tastes funny in his mouth. This condition is so rare, that it seems no one knows why he doesn't want to eat. It is hard a lot of the time, but there is so much joy mixed in with it, too. He is the sunshine of our home and his brothers and sisters are crazy about him, too.

    I send you lots of love and hugs today for your little girl. You sound like an amazing mom.

  10. Hi Courtney,
    I found your blog through Mix and Match Mama today; and your story brought tears to my eyes and reassured me that God works miracles. We have a family friend whose little boy has down syndrome, and I truly believe that God gives special parents special children! Brenna is absolutely beautiful! Looking at the photos of her chowing down on those Doritos is hysterical! Thank you for sharing your story. You are one courageous mama!!


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