Feeding Tube Update: Part I

This is my freaking cute kid, my little Quinn girl! Here’s an update on how things are going with her feeding therapy and her G-tube {who she calls “Buddy”}.

Today was our last day at High Hopes therapy center for kids in Nashville (because we are moving, more on that later.) and I’m having ALL the emotions.

Hopeless to Hopeful….

We have been seeing Quinn’s speech pathologist, Lori, at High Hopes for a year now. It’s been the biggest blessing imaginable. Lori has walked us through many ups and downs and frustrations. The first day I met Lori I probably looked like a living psycho because I cried a lot and had no idea what to expect. But man! She and Quinn just connected immediately. Quinn has made more progress with her swallowing and eating this past year than we ever could have imagined, so I’m sharing that now 🙂

Before we came to Lori we had been through 4 different therapists for Quinn’s swallowing disorder/aspiration/feeding issues. We had even been admitted to an in-patient feeding program at one point, and THAT was disastrous.

I was admittedly feeling hopeless a year ago, wondering if there was someone who could even help us at all. Quinn was crying, fighting, and having extremely high anxiety around any drink or food item that we or any therapist would try. Her aspiration (liquids/food going down the trachea instead of down the esophagus like it’s meant to) was still lingering and causing issues at every turn. Every therapist we tried either told us they weren’t sure how to help Quinn or they worked with her for a while only to tell us that she wasn’t progressing. Some of that had to do with Quinn being so young and needing more time to get stronger, but some of that was also just needing to find the best person for the job. And we sure found that at High Hopes. We are SO sad to be leaving Lori, and we’re praying we get connected to someone for this next stage who can continue working with us. And who will love Quinn as much as “Miss Glori” has!

{No idea why Quinn called her Glori instead of Lori. But it is adorable.}

Her Triumphs…

  • Aspiration: Over the past year, Quinn has learned to control her swallowing muscles and does NOT aspirate liquids anymore!!
    So huge.
    This was the main issue when she was extubated as a baby that kept her from being able to feed at all. It’s why she came home with the tube in the first place, the inability to breathe/swallow/feed all at once without de-satting and choking. So anyways, now here we are almost 3 years later, and her latest chest x-ray and check-up showed that her lungs are finally CLEAR from any signs of aspiration.
    {If I weren’t pregnant, I’d be celebrating with all the wine.}
  • Drinking: Quinn drinks fluids by mouth now! Up until now, Quinn couldn’t drink enough of anything to keep herself safely hydrated. So we had to not only feed her meals through her tube, but extra fluids too. But now, Quinn drinks enough water to do it on her own! She has a more difficult time with other drinks like milk, smoothies, juice, etc, but milk has started to come moving right along. So we are working a lot on adding other drinks to her repertoire.
  • Eating: The list of foods Quinn eats now has grown.
    {Except vegetables are a literal joke, and if we give them to her, it’s as if we have asked her to eat a whole colony of mutant ants covered in dirt.}
    *eye roll*
    A year ago, Quinn would MAYBE, over the course of a whole day, be able to eat half of a banana and like…3 crackers. Maybe.
    NOW. Now she has a whole list of things that she can eat at almost a normal amount. We have many, many days that she goes almost the entire day without needing a tube-fed meal! She enjoys so many things that a typically-eating toddler enjoys. She has learned more about hunger and when she is hungry {we still have some work to do in this area}.But all of this means we know she is capable of eating, she shows a lot of interest {when she isn’t being a butt stubborn toddler}, and she CAN do it.This is no longer medical, peeps.
    This has left the medical-issue building and roamed right into psychological/behavioral. It’s time to overcome this!

Her Next Steps…. A Tube Weaning Journey

After a long year of uphill climbing, Quinn has reached the point where her therapist and all of us think that all she needs now is a final push to get her past this last hump. Quinn is almost 3, so let’s be real, soooo much of what she’s dealing with now is simply toddler behavior. But also, sweet girl has only known her tube for her entire life. She’s never known a day without it. And truthfully, neither have I. It has become so normal to us, such a part of how we’ve done our life, that she has become dependent on it. It’s like a crutch.

She knows that her tube gets fed if she doesn’t eat. So a lot of her just feels unmotivated. I would too if I were in her shoes I bet!
{OK. Maybe I wouldn’t. I love food so much I would marry it. I don’t understand anyone who looks at a plate of food and goes “nah, better not.” I have fourth meal every day. So scratch my empathy}.

This exact interaction often happens at meals where she’s struggling:
Me: “Quinn, it’s time to take bites and feed your tummy, or I will have to feed buddy with the tube.”
Quinn: “Mommy, just put it in the tubie, I don’t want this food.”
Me: *she has morphed into a smarter species….must change tactic…*

Totally a CRUTCH!

The thing is, Quinn has been cleared medically of any issues holding her back from eating and drinking. This tube dependency is nothing other than just that now…she has proven that she can do it! We just need a team that can help us navigate the best way to wean her off the tube safely and without causing damage emotionally, physically, or psychologically. Because tube weaning without medical supervision can turn out BAD and be quite dangerous.

Cincinnati Children’s Hospital Trip….

This is where Cincinnati Children’s Hospital comes in! We’ve been referred there by her pediatrician and therapist, who both think the Tube Specialists there can walk us the rest of the way. This involves an overnight stay in Cincinnati NEXT WEEK! And a long, long day of observing Quinn, meeting with the team, and getting their thoughts and their plan into place. If they think she’s ready, that is…we are praying so hard that she is. We don’t want to push this too early and risk all the progress she has made. So we covet your good thoughts and prayers our way as we look into all of this for Quinn.

We travel to Cincinnati on Monday, stay the night, and spend Tuesday at the hospital with their Feeding department. We don’t know tons of details, but we do know that it could be the beginning of a whole new world for her and us.

We also know that, in order for her feeding tube to come out, Quinn has to go 6 straight months without needing it at all. This means 6 months of eating and drinking all she needs without losing weight at all. In fact, she has to show a normal pattern of growth during that time for the doctors to agree that she is ready to be tube free. So it’s still a long process BUT we are closer than we’ve ever been!!

She’s probably consuming, on average, around 75% of what she needs to on a regular basis. So close I can almost taste the tube-freedom.

This is “Bear” (original name I know) and Bear is amazing. Made by a company called Tubie Friends that give animals “surgery” to help kids feel like they have a special buddy who is just like them!

So. That’s about it for Part I! Thank you for reading, this was a long one. And if you think of us, we’d love prayers for our trip, the evaluation, and for the next step for Quinn, whatever they determine that may be!

xoxo,

Ansley

22 thoughts on “Feeding Tube Update: Part I

  1. If there was ever a kid or parents that can do this , it’s you all. Praying for your trip and journey ahead !! Also, I’ve heard Cincinnati has awesome food, might just be a upside of being preggo and traveling All
    The way there 👍🏻🤜🏻 #fourthmeal

    1. thank you!! That’s so sweet. and YES I’ve heard there’s an ice cream place next to the hospital and I’m so irrationally excited about it haha!

  2. This makes me SO SO happy!! Been praying for that little one since she was born. I am so proud of you three – this journey is not for the weak that is for sure. You can do it Quinn, we’re rooting you on little one. and moving?! Can’t wait to hear about that too! Love you guys!!

    1. Woody LOVE you always! You’ve always been the sweetest and most thoughtful friend. Thank you for the prayers since day 1, I’ll definitely always treasure you even from afar 🙂

  3. So, so proud and happy for sweet Quinn! And your beautiful little family. Many prayers and much love to you all! ❤️❤️❤️

    1. Thank you sweet Brittany!! I’m so thankful that you’ve kept in touch with us, you were such a special person to us in NICU days:)

  4. I remember a very determined child, named Ansley, who managed to accomplish everything she made up her mind to do. I do believe you have passed that wonderful quality down to Our precious Quinn. And I know we will see a “tubeless” Quinn very soon!! I can’t wait to get her and Brooklyn together. Our God is an awesome God!! I love y’all and pray for continued healing.

    1. Thank you Mrs Linda!! You’re so special to us! Thank you for praying for us and continuing to encourage me.

  5. I continue to pray for Quinn. And you. This is such a beautiful story of hope and love. Thank you for sharing your story and inviting us prayer warriors from cf in. God’s blessings on your journey.

    1. oh man, I definitely couldn’t imagine being in this without all the prayers coming from you guys! that’s for sure 🙂

  6. I’ve got a huge smile on my face… I’m so proud of your mom skills! You love with ALL that you have and then some more. I know Quinn will have an incredible testimony to share Jesus through because her Mommy always found a way to inspire her and display spiritual growth and wisdom every day of her precious life. As always, I continue to pray for your family and I know your journey has blessed so many… Love you, Ansley!

    1. oh gosh, thanks girl. I definitely don’t always feel like I’m equipped, and I feel like I let my frustration show all the time 😬 Even though I try not to! Haha! Love you:)

  7. Love reading about this as Mackenzie is somewhat similar. I’ll be praying for all of your specific hurdles! I know Quinn can do it too! You’re such a wonderful mom to her Ansley- I’m sure it can get frustrating at times, but I know God grave her to you for a reason ❤️ Sending lots of love and prayers 💕

  8. Bye bye Buddy. You’ve been a fantastic friend to be with Quinn this far but it’s time for you to go! Praying for OH next week sister!

  9. Ansley – Know we are praying for these specific things you’ve mentioned in this post. For a good trip to Cincinnati, that the doctors and specialists there will come up with the perfect QPP (that’s Quinn Program Plan) and that Quinn will be ready for this next chapter. We’re so happy to hear about all this great progress she’s made. Surely if she tries a Krispy Kreme donut or Dunkin Boston Cream one, there will be no going back to the feeding tube. Love you sweetie. Safe travels.

    1. Prayers for a successful start to the “tube-free” life! Super-Quinn can do this!
      Safe travels! Love to you all!

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