Skip to main content

The positives of having a feeding tube

This shouldn't come as any surprise but having a child with a feeding tube, some days are just plain difficult, frustrating, messy, challenging, emotional, etc. BUT, I like to look at the silver linings, and in the past 21 months, we've definitely found silver linings to our feeding tube cloud. In the spirit of Thanksgiving since it's November now, I thought I'd write about some of the positive aspects of having a tube-fed child.
First and foremost, there is the peace of mind that comes from knowing that my baby who was essentially starving herself & now has no desire or knowledge of how to eat, can survive because of the feeding tube. It has literally saved her life, and that's a HUGE silver lining! This is a picture from a few days before she got the tube:
She was 2 months and 3 days old and weighed 8 lbs, 8 oz., which was less than a 2 lb gain since birth. She was miserable, I was miserable, and even though life with a brand new NG tube was exhausting and had a new set of challenges to it, the feeding tube SAVED her. As she slowly lost any desire to eat, it became her lifeline and it keeps her alive now that she doesn't know HOW to eat (or want to :).

We have seen different positives at different times during all of the phases Raya has gone through. One of the positives that hasn't always felt like a positive is the many opportunities we've had to raise awareness of what feeding tubes are for and why children have them. I think it happened more when she had the NG tube since it was right there on her face, but we do still get a lot of questions. Sometimes it's thoughtless comments from people who probably didn't mean to be hurtful, sometimes it's innocent questions from curious kids, and sometimes it's questions from people who genuinely want to know. However the questions & comments come, I love opportunities to help educate and explain to people why Raya has a feeding tube and what a blessing it's been for her. Before Raya got her NG tube, I had only known one or two other people with feeding tubes and never imagined that I'd have a child who would need one.


2 months old at PCH
For the first few months, I only knew one other mom that had a child with a feeding tube. She was always great about giving me suggestions & helpful hints about how to work around the NG tube and it really helped to have someone that understood what we were dealing with. Slowly over time, I would run into other parents of kids with feeding tubes. Then when I was really starting to feel alone, I stumbled upon a website called Feeding Tube Awareness that was started by mothers of tube-fed children who wanted to clear up misconceptions about feeding tubes and educate the public. Suddenly, there were pages and pages of people with stories about their lives with tube-fed children. Not only that, but there was a link to their facebook page which has become a wealth of support and knowledge for me as we have dealt with different issues that have come up. (**If you or someone you know has a feeding tube, you REALLY need to check out both of those links!!**) No matter what the issue is, there is SOMEBODY on the facebook page that has dealt with it before and can offer helpful suggestions. I have been privileged to "meet" so many amazing mothers who have been through such difficult challenges with their children's health. Learning their stories & what they've been through has helped me to really appreciate the things that have gone right for Raya.

I've always considered myself lucky when it comes to getting my 3 older kids to take medicine. They're almost always willing. :) However, if it hadn't been for the feeding tube, there is NO way that we could have gotten medications (at least 2 doses twice a day) for the past 22 months down Raya's little throat. She was never very good at swallowing her Prevacid, so I've always been grateful to have a reliable way to get the medications directly to where they needed to go.

And along those same lines, there have been times in the last 2 years when Raya's very skinny big sister has gotten sick and I have been SERIOUSLY tempted to put an NG tube in her just to keep her hydrated. All it took was Kaida throwing up a couple times and suddenly seeming very frail to help me realize what an advantage Raya's feeding tube is if she ever gets the flu (heaven forbid).

This one is kind of silly but it's actually nice to have some extra medical supplies laying around. A month or two ago Raya's big sister got sick and I thought it might have gone down into her lungs, so I pulled out the little hospital standard issue stethoscope that we have 2 or 3 of and listened to her lungs. Low and behold, one side sounded crackly and the other side didn't. I took her to the doctor and sure enough, pneumonia. Then last week, Kaida fell off of the bathroom counter and split her ear open. We just happen to have a ridiculous supply of gauze but it's hard to find other uses for gauze that has a hole in the middle and a slit in one side. It worked great on her ear while we waited for her turn at urgent care. Then there's the abundance of medical tape. I think we have some of just about every available variety and it's been used for every imaginable purpose in our house. (I plan to do a post very soon about what our favorite adhesives are and how we've used them for their intended purposes so stay tuned for that. :) They've taped pictures on the fridge, notes to kids on the bedroom doors, Angry Bird eyebrows & beaks on kids' faces for Halloween, labels on herb pots, and of course tape is Raya's favorite thing to play with. Then there was the puke bag she used for a trick-or-treat bag. :)

Catering to my lazy side, I have much appreciated the fact that when we're out & about, all I have to do is pour more formula into the feeding pump bag and push a few buttons & she's good to go. The only catch is remembering to bring everything that's required in order to do that. :)

Since we've started giving Raya real pureed food through her tube, I've come to appreciate how nice it is to be able to feed her a perfectly healthy diet. I don't have to beg & bargain to get her to eat healthy food, I just puree it and squirt it in her stomach. :) Not to say that there won't ever be an issue with that, but for now I'm just pleased as punch that I can feed her things like turnip greens and canned vegetables without any resistance. :)

I'm sure there are things I've left out. It may just be a phase that we are in and there may be more ups & downs in our future, but right now things are good and we are grateful!

Comments

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …