Life After NICU

My Little ‘Tubie,’ The Beginning of a New Journey

Sitting in a hospital room, watching James sleep, tracking his vitals on a monitor. An all too familiar situation. We’ve been here a few times before, but this time there’s one very big difference. This time he’s not just recovering, he’s getting ready for a new beginning. One that starts with a well-nourished, healthy little boy. That makes my heart happy. There’s no telling where that can lead us!

The night before surgery didn’t feel like a new beginning though. I cried as I watched my happy little boy taking a bath, wondering if we were doing the right thing. We have agonized over this decision and spent so much time doing research, questioning, waiting, talking with doctors, and getting second and third opinions. We’ve literally taken years to come to a place of acceptance. We first discussed a g-tube before James left the NICU. And even after all of that, there’s still doubt. If only I could find a roadmap, laying out exactly what we’re supposed to do in great detail, leaving nothing to chance. I guess until we find that elusive map we’ll continue to take careful steps down this path, doing our best to make the right decisions for James.

After reading a few pages of posts in a ‘tubie’ Facebook group, I was beginning to reconsider what the right decision is.  It’s overwhelming and down right scary to read about some of the issues that come up with g-tubes. I was sucked in at first, reading every post and comment, looking at photos, crying as I thought about all the what-ifs and things that could go wrong. I hate the possibility of causing James more pain. Finally I had to stop. I’m thankful there are places to go with questions if/when they arise, but I can’t prepare for all of the worst case scenarios. I don’t know what problems we will have. I don’t know how James’ body is going to react, or what our worst case scenario will be. There are lots of unknowns. I certainly want to be aware and know what to look for, but my focus can’t be on everything that can go wrong. That’s not the way to begin this journey.

James Recovering

Thank goodness Mickey Mouse keeps his mind off the discomfort following surgery.

Good things are going to happen as a result of James having a g-tube, and I have to focus on those. I know I will need to remind myself often, especially at first, but I want the benefits of this journey foremost in my thoughts. This is what it’s all about.

  • Mealtime stress is gone.
  • The pressure to eat is gone.

Just those two are huge!

  • James will gain weight.
  • His health will improve.
  • His development will improve.

And those are just as huge. Everything we’ve wanted and worked so hard at achieving over the past couple of years is now within reach. I keep reading each one of those statements over. I’m not sure you can fully understand the weight that’s been lifted unless you’ve experienced the stress and heartbreak of a child who struggles to eat. To be certain of those five statements is truly incredible. To know that James will be stronger and healthier, that brings tears to my eyes. That’s what lets me know we’re doing the right thing. The scary stuff may or may not show up, too. If it does we’ll deal with it and move on. But every one of these positive outcomes will occur. It doesn’t get any better than that!

So with that in mind, I’m excited about this journey and anxious to start seeing results. I know James will be feeling better soon. The discomfort of surgery will pass and he’ll be back to his sweet, busy little self. We’ll figure out new routines and learn more about what having a ‘tubie’ really means. And soon we’ll start to see a healthy, strong little boy emerge, and we’ll know it was all worth it.

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8 thoughts on “My Little ‘Tubie,’ The Beginning of a New Journey

  1. Alison, I loved reading this post and wanted to encourage you about the g tube as it seems you have read lots about the “bad stuff” that can happen.

    My goddaughter, born at 24 weeks gestation had a g tube placed prior to discharge from the NICU 6 years ago. At the same time she had a fundo done as well due to severe reflux. The g tube nourished her for 4 years because she WOULD NOT let anything pass through her mouth. She had been intubated for a long time obviously as a 24 weeker and nothing was going in that mouth and down that little throat if she had her way. She received tube feeding for 3 years at which time she did the feeding program inpatient at Our Children’s House (which I know doesn’t work for all children). She improved after that with oral feeding but still wasn’t ready to go “cold turkey” from the tube. Around age 4 she was ready and the tube was removed in a simple in office procedure (amazing) and she has been rocking the eating thing ever since….you would NEVER know what she went through and how we all struggled to get that baby girl to eat.

    Remain hopeful……and enjoy some peace at meal time knowing that he is getting what he needs and that he will not associate struggles with food……

    Much love and best wishes,

    Lisa Grubbs, President NICU Helping Hands

    • Thank you so much Lisa. I really do like to hear the successful g-tube stories. It gives me so much encouragement and makes me stronger in my belief that we’re doing the right thing. We’ve struggled with this decision for so long, and now that it’s done we’re going to focus on the positive. I know a lot of good things will happen as a result of this tube and he’s all the better for it.

      Thank you so much for your encouraging words this morning. Exactly what I needed!

      Alison

  2. I know it is so hard making all of these tough decisions for our special little guys, and sometimes the possible outcomes can be scary, but it sounds like you and Andy have made the best decision you can for James. I felt a sense of defeat in finally giving in to the g-tube for my James, we had so far overcome FTT, cyclic vomiting, and dysphagia, and yet we still ended up between a rock and a hard place for his many medications. Since getting the g-tube he has become fairly reliant on it, but feedings are no longer an emotional struggle, his seizures are better controlled and I don’t have to worry about him not eating, getting dehydrated, or not getting his meds. I hope for your James that his recovery will be quick and smooth and that he will flourish with the benefit of good nutrition. I know getting rid of the stress involved in feedings is huge in itself!

    I am always here if you want to talk or commiserate!

    • You’re so right. There are so many big decisions to be made, and it seems when you finally work through one there’s another one right behind it. I’m glad your James’ seizures are better controlled with the tube, and not worrying about getting dehydrated is pretty big too. I know I’m looking forward to being able to put meds for James through it. It is such a struggle and often ends with him vomiting it back up if we are able to get it down. Trauma none of us need.

      I think about you guys often and hope you’re both doing well. Would love to see you guys again! Take care Rose.
      Alison

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