NG Tube Journey

Hello everyone! My apologies for taking so long to write this blog! As promised, today I’ll talk about one major part of our feeding journey with little Braveheart. His NG tube days.

When I was pregnant, I prepared so much for breastfeeding and bottle feeding. I stocked up on nursing bras and nursing tanks, I made sure to have a breast pump, and we made sure to sterilize several Philips Avent 4oz baby bottles and nipples. We were ready for whatever came at us! Or so we thought. What we weren’t prepared for were syringes, feeding tubes, high-calorie formulas, “DermaPlast” and other things that became our feeding essentials.

Before we brought our little heart warrior home, we learned how to insert, check, and remove his NG tube.

An NG tube is a naso-gastric tube; a tube that is inserted through a nostril and threaded down into the stomach. It enables an individual who cannot eat or drink ‘normally’ to still get nutrients.

In the NICU, a nurse taught us, first by having us practice with a special baby doll, and then she had us actually insert and remove Braveheart’s NG tube. I was absolutely terrified to put the NG tube in for the first time. In fact, the scare factor never quite disappeared for me, but for my hubby who did like 90% of NG tube changes, it seemed rather easy. We were told that it had to be changed every 3 days, however, little Braveheart had a habit of pulling it out almost every day. He was constantly clutching it for dear life.

As much as we hated that tube, it became our new normal. Every 3 hours, like clockwork, we would hook the end of his tube up to a large syringe of special formula and let gravity do its job and deliver it to Braveheart’s little stomach. Generally, it was easy at home as we had set up a hook on the wall near his bassinet for these feeds. We would swaddle him so that he couldn’t pull it out, and give him a pacifier to suck on so that he would learn to associate a full tummy with sucking.

In public, tube feeds were a little more challenging, and often rather embarrassing. Until we learned to ignore the awkward stares of others and just smile back at them instead of cowering or trying to conceal what was going on.

I commend tubie baby parents, especially those with babies who have G-tubes or J-tubes (directly into the stomach or intestine) because I know those require even more care and close follow-ups with a specialist.

I still remember the day that we were given permission to remove little man’s NG Tube. With excitement and anxiety in our hearts, we reported to the hospital for a Modified Barium Swallow Study. It was quite interesting. I was fitted with a lead vest to protect me against the radiation, and then instructed to sit on a chair with Braveheart. The specialists added a special solution called barium to a small bottle of formula and we thickened the formula with oatmeal as we usually did. The only thing that would’ve been out of the ordinary to Braveheart, was that his thickened milk now smelled and tasted like berries.

For the first part of the study, I fed him the thickened formula with the barium while the specialists observed via X-ray. With the barium, they were able to see where the liquid traveled as he drank; whether he aspirated some into his lungs like he used to or if it went directly to his stomach. Then we thinned out the liquid so that it was less thick. And then it was thinned to normal formula consistency.

I remembered praying so hard that he wouldn’t aspirate any liquid into his lungs. Then we heard those amazing words. “He doesn’t need the NG tube anymore. He drinks perfectly. No aspiration.”

Whaaaat! We couldn’t be any happier. As we left the X-ray room, we realised something frightening and also hilarious. The nipple I had been feeding him from was a fast-flow nipple, one that we used since he took liquids by mouth so thickly. He didn’t even choke or anything. He’d passed the swallow study with flying colours.

We sat down in the waiting room and gave Braveheart one last tube feed. Then right there, I pulled that NG tube out and we had a tiny, quiet little celebration right there in the hospital lobby.

To say that our challenges with feeding were over there would be lying. Life actually got a little more nerve-wracking but to this very day… Braveheart loooooves his bottle!

 

Thank you for reading!