aimee_bee_BY1"
home (4) about me (7) down syndrome (6) contact

five mickey button G-tube tips & tricks

Tomorrow will be one year since Lindie girl got her gastrostomy tube (G-tube). Initially, we were terrified of the idea of it, not wanting anything "extra" or "invasive." At the same time, we were exhausted of the daily NICU routine. Lindie struggled with eating during her entire 35 day stay in the NICU, not to mention the days before we arrived at the NICU. We syringe fed. We tried breastfeeding. We tried bottle feeding- bottle after bottle, nipple after nipple- all with no improvement. Finally, at the beginning of April we were ready for the "G-tube conversation" with her doctors.

We chose the G-tube for a couple reasons. One, our local children's hospital won't send babies home on an NG-tube (Nasogastric tube). So even though she did have an NG-tube for a few weeks in the NICU, it was not an option for us to go home with one. And two, we had been going back and forth to the hospital for a month with our two year old daughter. We were exhausted. She was exhausted. Chris was back at work. We were depending on our parents, who had been using their own sick days and personal days to help us get through. Life was crazy. We were ready to be home and begin our lives as a family of four and get some normalcy under our belts. The G-tube allowed that. It allowed us the ability to continue to try to breastfeed and bottle feed, while having the G-tube as a safety net.
I remember struggling with the fear of "just giving in" getting the G-tube and that if we could "just figure something out" we could make Lindie want to eat and then she wouldn't need it.

It makes sense if you know me. I'm a pretty non-invasive gal. I opted for two medicine-free, all natural child births. When I have a headache, I drink more water instead of take Tylenol. And when my kids are sick, I am hesitant to go straight to the meds. So the idea of getting a G-tube felt like a failure.
But Lindie needed it. She needed nourishment and it wasn't best for her to continue hanging in the NICU when she could be at home. It wasn't the best for her and it wasn't the best for our family. So we chose the mickey button G-tube.
On April 4, 2017 Lindie had surgery to put it in. It was pretty typical. She healed and we learned how to feed her with the mickey button G-tube. One week later we went home!
At first the G-tube felt like alien territory. I had no idea what to do or how to do it. I wouldn't leave the house for fear of having to (gasp!) tube feed her in public. I didn't know if a little redness was too much redness or a little moisture was too much moisture. I had no clue!

It got a lot easier with time. I grew more confident and learned how to tube Lindie in a variety of places: doctor's offices, coffee shops, parks and ballet studios- wherever babies eat, I G-tubed Lindie there! (And still do).
Now that's it been a year I feel a lot more confident as a Mama of a tubie. I've grown really thankful for Lindie's G-tube and am so happy we got it when we did. I also feel like I've learned a few tricks here and there when it comes to taking care of a babe with a mickey button G-tube, so I wanted to share some of those.
ONE, don't be afraid to call your pediatric surgeon. Seriously. I called them like five times in the first month home and about four of those times went into the office to get her G-tube checked. Lindie had a good amount of granulation tissue early on while her G-tube site was still healing. I was so thankful for our Pediatric Surgeon and his PAs who were always so helpful and kind. They would usually use some silver nitrate to help get rid of the granulation tissue. And eventually her G-tube site healed enough that the granulation tissue went away for good.
TWO, get yourself some Calmoseptine Ointment. (Also known as butt cream. Seriously! When Chris went to Walgreens to buy it he asked the pharmacy tech where to find Calmoseptine and she said, "Like the butt cream?" Poor guy!)

Early on when we first brought Lindie home her G-tube was still fresh. It took a good month or two to fully heal. In that time we dealt with a lot of redness and granulation tissue. I wish I had known about Calmoseptine then (and maybe I did but was too overwhelmed to remember at the time) but Calmoseptine is so great if you notice any redness. It clears it up quick! I just used some on Lindie tonight!
THREE, use a Boppy while G-tubing. When Lindie was little she had a lot of reflux. She needed to be G-tubed at an incline. We loved using the Boppy for this reason. As she got older, we began to tube her while sitting in a high chair, but the Boppy was so handy before she could sit up on her own.
FOUR, buy some G-tube covers. I was hesitant to buy these at first. Chris and I are pretty frugal, so I didn't want to buy anything "extra" if it wasn't necessary. I thought they were just for looks, but I quickly learned that they're not. For Lindie, the G-tube covers, or G-tube pads, help absorb extra moisture (leaking milk or stomach juices, maybe?) that comes out of her G-tube site from time to time. It's not a lot, but enough that if she doesn't have anything around her mickey button the extra moisture causes redness. However, if we use a G-tube cover then she's good to go! We usually use one all day and switch it out at night before she goes to bed. You can find them on Etsy or Amazon. Our favorite shop is Fashion Tubies.
FIVE, be strategic with clothing. One of my biggest fears is that Lindie will accidentally pull out her G-tube. (Ouch)! We've had a few close calls- once in the bathtub and a few times while feeding her, but typically Lindie is in a onesie or romper so that she doesn't have access to her mickey button. Very seldom will we dress her in anything else just for this reason.

Also, When Lindie wears onesies I dress her with the onesie on top of her pants (like the picture above). This allows easy access to her mickey button without having to take off their pants, which really is no fun in the winter time. I didn't discover this until Lindie was 10 months old, and I wish I had discovered it sooner!

And finally, in the summer I dress Lindie in snap-up rompers because they're so easy for tube feeding. Our favorites snap-up rompers are from Carters. I just bought her five for the summer because they are so easy!
Lindie has had the mickey button G-tube for the majority of her life. If you would have told me a year ago she would still have it and be using it today, I would have been really disappointed. And there is part of me that is bummed that she still has it and uses it daily.

That being said, I am so happy we got it when we did! Because of the G-tube, we are able to work with Lindie at her pace with eating. We are able to do therapy and try new strategies and allow her to have a voice in what she likes and doesn't like and do all this without the stress of worrying about nutrition- all because of the G-tube. For that I am so grateful!

If you're interested in our feeding routine, check out my Feeding Therapy Instastory over at @aimeeswift. I explain all of that there!

No comments:

Blogging tips