Feeding Tube Update: Part II

Okay, so I’m FINALLY coming up for some air after the craziness of the past 2 weeks. All packed into those were the Cincinnati Children’s Hospital trip, moving from Nash–> Atlanta, unpacking, getting settled, lining up all our new Georgia stuff, AND then some nasty respiratory bug attacking Quinn…. shew. Maybe I still need some air 😉

But I have been wanting to write out how our appointment went with the multi-disciplinary feeding team up in Cincinnati. So here goes!

 We had Quinn’s appointment early that Tuesday morning, and the night before none of us slept much in our hotel. So going into it, we were all exhausted and we were nervous about how Q would do being so sleepy. But she was a champ. She was charming as always and didn’t hesitate to show everyone in the room my pregnant belly by attempting to lift my shirt clean up over my head haha!

A speech pathologist, occupational therapist, pediatrician, and dietician all came into our little room and sat in a circle with us. We let Quinn sit in a highchair and gave her a meal to work on and eat so they could observe her. While she ate (in her own interesting way with her own techniques ha), all of us chatted. We talked about her journey, how far she has come, and what her struggles are now. We probably discussed it all for an hour. They were each so kind and helpful, and they each made great points.

We went into it with this goal: that they would all think Quinn was ready to start the tube weaning process. We were hoping that after our meeting, they would make a plan with us to begin to wean her off the tube safely and gently give her the extra push to eat on her own.

Wellllll we did not get that this time around, which at first made us feel discouraged; but we quickly came to realize that what we got was even better for her right now.

First, the team gently told us that we as her parents need to try some different mealtime/table techniques with her. Honestly, and I feel terrible about this, I think we have been putting SO much expectation and pressure on her to make these huge strides and to get rid of Buddy sooner than later, that we’ve actually made her more stressed over it. And we totally saw that while at the appointment and while the team asked us a million questions.

One of the most humbling things as a parent is when you realize that what you’re doing out of the best intentions may not be working like you thought it would….then admitting when you need to re-evaluate and try something different. Obviously nobody wants to hear that they aren’t helping their kid like they think they are! But we want to learn from our mistakes and try again, so we have been implementing the advice they gave us. And it’s already gone so much better. 🙂

Secondly, and I didn’t even THINK of this part of the whole thing, the team brought up Quinn’s digestive needs as far as being regular goes. Right now, because she’s extremely picky and still has aversions to a lot of veggies and fruits, Quinn has to get all of those in her tube with milk (which she has trouble drinking) to keep her body going potty like it should, if ya know what I mean. And in my mind, toddlers are all pretty picky right?? Haha. So I thought maybe the fruits and veggies would just come with some more work and therapy. But the reality is, if we took away any of those from the tube right now, her digestive system would be in some trouble because she can’t go without that stuff. Constipation would seriously (and already does quite often) cause her some pain and discomfort. So the tube stays until she drinks and/or eats the things she needs for digestive health.
So. All in all, it was really a good experience. The staff was awesome, and they pointed out the things we weren’t seeing. They told us to keep going with her feeding therapy and to keep working on her skills. MAN I am so sad we won’t be going back to High Hopes to see Lori, because she was amazing with Q and I know she could do the best job 😭 But we are working on finding someone here in ATL who can pick up where Lori left off and hopefully keep the progress moving.

I love this one of Q and her daddy looking over the city. Cincinnati was cooler than we thought it would be.

I hope that made sense. We are so very proud of our girl…and it’s easy to forget how little she still is, how far she’s actually come, and how hard she tries when we’re in the harder moments. Which is totally unfair to her. She’s going to absolutely soar, she already does! And we know she will move on from her feeding tube when she’s ready. We just need to be okay with where she is right now, and keep encouraging her to be brave.

Sweet girl- In the grand scheme of things, this tube is so minimal. You’ve fought through it all, and this tube is the least of the worries we could have had! We are grateful for you. You are strong and courageous! This little time is such a small blip in life, and even if it includes the tube, we are in it with you and will always be here to guide you. You are healthy and happy and that’s what matters to us. We love you endlessly! Thankful that Buddy has made it possible for you to thrive so far.

Xo.

4 thoughts on “Feeding Tube Update: Part II

  1. You are doing great mama. Hard journeys are best walked one foot in front of the other. Sometimes the expectations of where we want to be and where we actually are disapppointing but I truly believe God takes us by the hand on gentle walks rather than quick sprints. Quinn is doing amazing and You are doing so amazing! Dont fault yourself for wanting progress and believing for more for her that is what mamas do – we are their cheerleaders!. She is so lucky to have a mama who keeps fighting for her, keeps believing for her but who also knows when to rest a bit before moving forward. Just think of this as another rest stop before she grows some more. Little steps make bigger strides . Praying for all who come along side you in Atlanta to walk the journey with you.

  2. Hey, you’ve already figured out how the parent thing goes–try, mess up, try something else! And then when you think you’re figuring it out you have another kid who’s totally different and none of the same things work with them!
    Thanks for sharing your journey. Praying for y’all. ♥

  3. So glad to read this update Ansley. You are right – Quinn has come so far and she’ll get thru this too. We know she’s a fighter! Love you sweetie!

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