Life with a Feeding Tube

We try to educate others about our everyday life as much as possible, especially when it comes to unique medical things that we ourselves knew nothing about six months ago.

That is the goal of this post: to show what it is like to feed Tori through a G-Tube and how that affects our lives.

Tori first received a feeding tube on February 6, 2015  (NG Tube, which goes through the nose to the stomach). She had stopped nursing well and wouldn’t take a bottle. This was a symptom of Krabbe but we didn’t know that at the time.

Hershey Medical Center provided us with adorable stickers for the tube because, as the nurses said, if she was going to have a tube it would at least look cute 😉

She had her G-Tube/Nissen surgery on March 23rd at Hershey Med and I was afraid to take care of it. Other Krabbe parents had said it would make life so much easier but I didn’t believe it. This was much scarier than a tube through her nose – this was a portal directly into her stomach!

But, they were right. The G-Tube makes feedings fairly simple, and the Nissen has greatly decreased her vomiting (a Krabbe problem that she had from birth).

Another plus was that we were able to see her beautiful face again!

So, what do feedings look like?

Well, to start, here is what our schedule looks like currently:

Having a strict schedule helps us ensure that meds are given at the proper increments (some have very precise rules about timing), and it also helps us plan excursions because we easily know what she will need while we are out.

There are many pieces of equipment and many supplies that are always on hand and they are delivered to our home monthly: feeding bags, G-Tube extensions, syringes, etc.

On the left is the G-Tube, also known as a MIC-key Button. We replace it every few months at home. We use the pads on the right instead of gauze to absorb any residue that comes out of the tract. The pads are changed 1-2 times a day.

Below is the pump and pole that we use at home. Her adaptive stroller also has a pole, and we have a portable IV pole for traveling. This works far better for us than the backpack that came with the pump because we always had issues with keeping the bag above the pump to avoid air getting into the tube.

The pump regulates the speed of the feed to ensure that she can tolerate it. She currently eats 125mL over an hour, five times a day. This is slower than it was even a month ago, and it will slow down further as the disease progresses.

We use three feeding bags a day, switching them every other feed.

Tori is still on breastmilk thanks to generous friends who donate their pumped milk to us for free. Some have even shipped it across the country for us!

The milk is frozen in bags in one of our deep freezers (we had to buy one just to hold all of the milk we receive!). If I am on top of it, I try to defrost the milk for the next 24 hours by letting it sit on the counter for about an hour – that way it is still really cold and can safely go in the fridge. I then pour the proper amount into five bottles and add the MCT oil to it (MCT oil is a coconut-based oil that is easily absorbed into the body. Tori has difficulty processing fat of any kind so this is helping her gain weight).

The bottles are then placed back in the fridge until it is time for a feeding. We have a breastmilk warmer that is fantastic and it ensures that the milk is warmed evenly and safely.

The milk is then poured into the feeding bag, the pump is primed (pushes milk all the way through the tubing to ensure that air isn’t pushed into Tori’s belly), and we begin the feed.

One of the pros of tube feeding is that she doesn’t have to be awake.

The milk goes through the extension into the MIC-key button and into Tori’s stomach. After each med or each feed, we flush the tube with 5mL of distilled or bottled water.

She has gained three pounds since her surgery four months ago! This process is complicated but it has become part of our daily life and we rarely think about what a pain it can be (except now, as I write all of this out, haha).

Her doctors have encouraged us to still allow her to taste small amounts of things so that she isn’t deprived of the joy of taste. We often forget simply because of the stress of everything we have to do each day for her, but when we do remember she really appreciates it!

I miss the ease and convenience of breastfeeding, but knowing that she is safely consuming her calories without risk of aspiration makes all of this worth it.

Headed home!

Today was a good day.

I was finally well-rested (slept for 10 hours!!) because Brennan “made” me go home to sleep (like I would have said no). So thankful.

I got to the hospital at 9am and Brennan went home soon after that to shower and sleep, since he didn’t sleep well at the hospital.

We both learned how to feed Tori through the G-Tube (also called a Mickey Button). We learned to vent the tube if she has gas in order to burp her that way, and many other tricks.

She slept really well all day and it wasn’t even from pain meds!

                          

The feeds slowly increased all day to ensure that she would tolerate them well.

At 9pm we fed her 75mL by gravity (as opposed to a pump) and she did well! We signed our discharge papers and headed home!

Pray that she continues to heal well from the surgery and that she will be comfortable. And that she will sleep well. 😉

In Recovery…

Tori’s surgery went well and it took an hour LESS than expected! They were able to do everything laparoscopically so she won’t have any scars.

She is now sleeping in her recovery room and we are tempted to sleep as well. 😄 So thankful that she did so well!

  

Update on Feedings and Surgery

We were told yesterday that Tori’s g-tube/Nissen surgery will be at 8am on Monday in Hershey. We will arrive at 6am.

Poor Tori has been throwing up most of her feeds in the past few days, which is obviously not good for her (or for our laundry pile 😉 haha).

  

To try to help Tori tolerate her feeds this weekend, we decided to slow down her feeds from 3.5oz over 30 minutes to 3.5oz over 60 minutes. 

It has mostly worked thus far. She just threw up on me as I was typing.

Of course, this means that eight hours a day will be spent holding and feeding her until Monday, but she needs the calories and hydration!

Also, she has been coughing occasionally (not consistently at all), so we are praying she isn’t getting sick (it would be the first time ever). If she is sick, no surgery on Monday. I think it is just from her drooling so much when she sucks on her pacifier. 😄

Thank you all for your continued prayer and support! We still absolutely believe that God can heal her and are praying that He will.

For those not on Facebook, here are some pictures from the week:

   

                                 

Surgery Date

Short update…

Tori’s g-tube surgery will be on March 23rd in Hershey. She will be in the hospital at least two days, likely more.

We also have decided to go ahead with the Nissen procedure at the same time. We read about it, heard from a couple of Krabbe moms who regretted not doing it at the same time, and watched how many times Tori spit up or threw up this weekend, and we feel that it is the best move to make. We don’t want to have to do this, but it will make her more comfortable.

This also means that we likely won’t come to California until April now.

Only three more weeks of the NG tube 😄