I wanted to documented our journey with good 'ol tube feeding... sorry, this may be long! I have been tube feeding Bela for 2 years and 8 months.
The horrors of the NG tube are STILL with me. I cannot think about it without having horrible thoughts, but as Tanner always has to remind me, we did what we thought was best for Bela at the time. IF I could go back in time, (which is a very silly thing to say, because I can't) I would have NEVER subjected Bela and our family to that devilish little tube for as long as we did. Getting through a year with that thing was probably the single hardest thing on me we'd been though up to that point . It really was that bad. We tried and tried to get her eating before we put in the G-tube, but she was just not ready yet. I know that she needed the G-tube in order to learn to eat. It was a very crucial step for Bela. She needed lots of time to heal from the pain and trauma that the NG tube caused her. A week after her first bday I stormed (quite literally) into Dr. Graziano's office and with tears in my eyes begged her to schedule us asap because I was not going to put it in again. I was DONE. I know I was not the first mom she had seen in that condition . She scheduled us the next morning and told me Bela would never see one again. Although terrified of another surgery, there was real relief on that day. Her g-tube has been good to us. It has allowed us over the last year and 8 months to very slowly break down the trauma that the NG tube, breathing tube, suctioning, reflux, aspirating, gagging, and vomiting had caused. She really had SO much to overcome. It took several weekly therapists, trips to Tucson to work with more therapists, and lots and lots of work at home. And now.....
1 year and 8 months later...
We said goodbye to the G-tube today!!!!!
I'm still trying to wrap my brain around it. This morning about 9 a.m. I was in the laundry room doing laundry and Bela was in my room watching a cartoon. It's right down the hall so I can hear everything that goes on in my room. I came in with a pile of laundry and noticed she was holding something in her hands.. I thought it was nail polish or something. I put the laundry in my closet and went over to see what it was and to my astonishment, it was her tube. What's wierd about it is that the balloon the holds the tube in her tummy was completley inflated. You have to deflate the balloon in order to get it out of the tiny hole in her tummy. I have NO idea how she got it out, and how she did it without any pain, crying, or any peep at all. It was all the sudden just in her hands. She never usually messed with it, she knew if she tugged it hurt. It's a mystery.
So anyway, I sorta freaked out for a minute, trying to decide what to do first. It's ironic because I hadn't used her tube in 10 days. I decided it was time to stop giving her food here and there through her tube and to see what she was able to do without using it at all. Her eating has been so great lately so we were giving her a 'trial run'. I really felt like I was just holding her back by giving her a little of her food through the tube.. She wasn't having to be truly hungry. Her eating skills were finally there, so I went for it. She's been doing so great, there was talk of possibly removing it in a month or so IF she maintained her weight. But I wasn't sure if I should just seize the opportunity to just go ahead and be done with it for good or stick it back in. Only thing was, her hole looked completely shut tight already. I had no idea how long it had been out, but the hole is so small it closes up really quickly, so you don't have a big amount of time to get it back in if it comes out. It looked like it'd be really hard to get it back in, not to mention painful for her. I called Tanner twice, but he was in a meeting and didn't answer. So I called her cardiologist NP for her opinion. She told me to just go ahead and leave it out, that it would probably be a good thing for Bela and thought maybe Bela was just trying to tell us something. She's really good at that usually. So what was done was done! It was OUT! I'm still trying to wrap my brain around the fact the she no longer has a tube. It's really wierd after so long to not be able to feed her even if I wanted to. I'm just so used to it.
After I talked to the NP, I went back in to talk to Bela. She was still playing with her tube, and I asked her what she had. She held it way up and happily said, 'My tube!' Then I asked her if she was all done with her tube, and she clapped her hands and said 'All done, mommy! Yeah Bela!'
I feel really hopeful about this. I had been confused about what to do and Bela decided to make the decision easy for me. I think it was an answer to prayer really, because I had been praying a lot lately through this little 'trial run' about her eating and about knowing when and if she would be ready to remove the tube. It feels like a blessing. Then she proceeded to eat a great, big lunch right after! She still has her days and meals that she doesn't want to eat much, but she's 2 and that's just normal. Then there are meals where she eats great. I just HOPE so much that it's enough. I want to just be able to trust her to eat when she wants and how much she wants. I can't begin to say what it would be like to not have to count calories, and to count every bite of food she takes. And I am seriously considering burning her tube feeding supplies that take up two drawers in my kitchen! Just throwing them away just doesn't seem like enough..:)
Hopefully today marks the very end of Bela's tube feeding journey. It's cause for celebration around here!
Eating her M&M's during conference. She was 'playing bingo'. She loves chocolate.