G-Tube Skin Barrier Pad Tutorial + special needs spotlight

mad mim_g-tube skin barrier padYes, you just read that right–I’m posting a G-tube skin pad tutorial. Most of you–maybe ALL of you will be wondering what in the WHAT that is, but I’m not writing to you today. I’m writing to that one person who is searching for answers, maybe a little confused, overwhelmed, trying to figure out how to have and care for a G-tube fed baby. Basically, I’m writing to the mother I was one year ago.

Many of you know (and many of you don’t), that almost a year and half ago I had a sweet baby girl who had and has many health issues. We originally thought it was just a cleft palate (it wasn’t a just back then), but it soon became apparent that there was much more at play, although despite these many months, she is still undiagnosed.  Today I am honored to guest post over at This Little Miggy Stayed Home, and talk about our sweet Girly, and what’s it’s been like being the Mama of a special needs baby.

As far as this tutorial goes, there aren’t a whole lot of DIY’s when it comes to medical supplies. When Tiny first got her G-tube almost a year ago, we had months and months of stress and worry due to her sore and tender site (the gaping hole in her tummy).  It never would heal the way they thought it should, and it was a constant source of pain for her, and anxiety for us.  One of the things that really made a huge difference was when our wonderful speech pathologist Courtney suggested we find or make a skin pad to protect and act as a barrier between the port and her skin.  There are of course disposable pads that you can get, but we didn’t like them because you had to tape them down, and Tiny’s belly would get so raw and irritated with so much adhesive application and removal. Courtney had suggested these commercial pads called button buddies which I, like her, highly recommend if you’re not the DIY kind of person. I really don’t want to take away any business from them, but I know some of you are gonna do your own thing regardless, so I’d like to share what has worked really well for us.

These pads keep the port from moving around too much, as well as rubbing directly against her skin. If you have a g-tube fed baby and don’t know about these, then I’m so thrilled to proclaim the gospel of skin pad barriers!

I used soft flannel, folded it in half RST, and traced  around a 2″ washer (make the center circle smaller). If you don’t have a washer, the dimensions are 2″circle with a slit to the center and a 1/2″ diameter circle cut from the middle to create a donut.

mad mim_g-tube skin barrier pad

mad mim_g-tube skin barrier pad

Starting from the top left side of the slit, I carefully zigzagged around the two pieces WST so that all edges were sewn together, and then cut a small triangle of velcro and sewed it on with a small straight stitch to either side of the slit so that the two sides attach together.

mad mim_g-tube skin barrier pad

mad mim_g-tube skin barrier pad

mad mim_g-tube skin barrier pad

mad mim_g-tube skin barrier pad

Simple as can be, but worth their weight in gold!

mad mim_g-tube skin barrier pad

mad mim_g-tube skin barrier pad

37 Comments

Shauna

You, my dear, have just blessed some mother some where. Your courage and sense of balance through all of this is giving strength to another mom going through some ‘thing’, let alone those of us who know and love you. I am sure this has not been an easy path to walk on, but you have learned how to keep putting one foot in front of another. And sewing up a storm along the way!! God bless you, my Mim-sahib.

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Bonnie Titus

Yes, and I can confirm that. My son is getting his g-tube placed this Tuesday and his skin doesn’t tolerate the tapes very well (he’s had a NG tube for months now, the tape is totally destroying his cheeks). I want to feel more prepared (when upset need to do something) and I’ve seen pictures of kids with pads and figured that this was something that I can do that will help my son the most. I’m very happy to have stumbled across this blog and your helpful information. I have hemp/cotton fleece that I will be using with a layer of fun print flannel. Very soft and fuzzy 🙂 Thank you so much!

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Miriam

Oh I’m so happy for you! Our quality of life as a family improved SO much once my baby got her G tube, hope the pads help the transition! Thanks so much for commenting, and good luck!

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Krista

I just read your interview at This Little Miggy! You are an amazing mother! We all know that these children are extremely special, but I also believe that the mothers that they are sent to are angels. You are one amazing lady.

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the mither

Just looking into the eyes of our precious little Harper brings tears to my eyes. Love you both . . . .

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Anu*miki

I just read your interview. Beautiful description of your life with a special need kid. And you have every reason to be proud of her. She looks super cute in that last picture!

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Jacinta

In awe of what you’ve gone through and how you still manage to do so much …. you are definitely one strong woman! 🙂

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Aubrey Zaruba

i found you through the sns on this little miggy, and i’m dying of amazement at your sewing. i made a pattern for the first time yesterday, and nearly had an anxiety attack. i love love love what i’m seeing so far.

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Laura

My son wants to coordinate making sets of these for his Boy Scout Eagle project. How many would you recommend putting in a set for a family? We are hoping to find a hospital or organization willing to let him do this.

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Miriam

Laura I am absolutely thrilled about this idea, I think it would be fantastic. Just yesterday I was in the ER with our little Tiny, and all the Drs and nurses mentioned how great her little pad was, and how they wish they were more readily available!
I would say about 7-10 per family, as they go through them a lot like they do underwear. Another thing that would be really awesome to include with them is a little mesh laundry bag. They are so small and easily lost in a big load so I now always wash them in the little bag and have found it makes it so much easier to keep track of them.
This is so great, I would love to help in any way I can!
Miriam

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Miriam Matthews

Found you today thanks to the great google, lol.

My 21month old girl just got a g-tube put in 3 weeks ago (after having an NG since birth). I was going to buy some pads like above, but no one in New Zealand makes and sells them. But this is so easy, I’m going to have to make some for my munchkin. My munchkin was also born with a cleft, bilateral lip and palate and is also undiagnosed so far.

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Miriam

Miriam (lovely name, btw, don’t meet too many other Miriams!) I CANNOT believe that you had an NJ for that long!!! Tiny had an NJ for 6 months, and it was a huge trial–so hard to keep in, so hard to put back (NJ has to be put back in Floroscopy), so hard to move her around, to tape, etc. Seriously, how did you do it?? You will love having a G tube, it has made our lives SO much easier, and so much more normal as well. It will be exciting the first time it gets pulled out though!;) We’re pros now at that, too. I guess you can get used to anything, right??

We actually are fairly certain that we know our little Tiny’s diagnosis now, it actually came about by way of a reader’s comment! She has Cornelia de Lange syndrome, and so these last few weeks have been quite a lot for us, taking it all in. But I know how hard it is not knowing, I hope you guys find some answers soon.

Have a Merry Christmas, and let me know if you ever have any questions making these little pads! They helped us out so much!
x Miriam

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Miriam M

Munchkin pulled hers out a lot but our community nurse taught us how to replace as we only needed to test by aspirating and testing the acidity of it.

It’s more annoying than anything at the moment, not having a diagnosis, especially when I looks things up (that I see other parents write) and munchkin matches a few things, that are almost the same on everything else. lol

I managed to make one pad fine, but that was only because my mum used the sewing machine, all I did was cut it. lol. So I think I’ll stick to cutting a whole heap out and asking my mum to sew them together :p

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Miriam

Oh man, I was always jealous of you NG’s! We had to drive an hour and pay crazy radiology bills every single time she yanked that sucker out!
And I really do feel for you. I know how hard that is–not knowing, especially when everyone is offering you their two cents and trying to diagnose your baby for you. I actually stopped looking things up, and am surprised that I even looked up CDLS when the reader commented. I just did, and it was just right. I know what you mean about the characteristics being about the same for every little thing, it’s frustratibg. But with Tiny and this syndrome, it was like OH. MY. GOSH. this is it. The facial features alone were enough to convince me, but going through the list, there were so many things that I would never have dreamed were part of her syndrome–just little quirks even, and there they were on the list. So what I’m trying to say, is when you find it, you’ll know I think. In some ways knowing is harder because for us at least, it was having to give up hope that she would just grow out of her problems, and realizing how extensive and radically this will affect her (and our) life. But on the other hand, it’s hard to stare down the monster when you don’t know what he looks like, and so in that way knowing the possibilities can be the beginning of the healing process. I really do wish you luck and answers, I hope you meet with the right people and find the answers you need.
x

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Angie

Thank you! I have a very active 7 year old who just got a g tube. Granulation tissue keeps forming around her site. I heard these pads really help with the friction and any leakage or puss that might occur. Thank you for posting this. I am getting my sewing machine out today!!

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Rachel

Thank you so much for this. I found this tutorial months and months ago, when my daughter was losing weight and diagnosed with FTT, and doctors were starting to mention a g-tube. I saved this post in hopes that I wouldn’t need it, but…just in case.

Baby got her mickey button last week and it’s wonderful. I’m making her a set of these pads tonight.

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Miriam

RAchel I am so glad that you found this, and I just want to say, our world totally was 100% better after our little girly got her tube, it was huge for us. I hope that things get better now for you too!

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melanie

I am the mother with the new little 2 wk old, also with a cleft and other issues, trying to prepare myself for a g tube surgery in the next week or two. Thank you for this post!

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Miriam

Melanie, my heart is with you! It is a tumultuous, emotional, and stressful time I know, but just know that peace and confidence will come about everything, and that you will be become the absolute expert on your baby, and that whatever procedures happen (i.e. the g tube), that eventually the nurses will all ask YOU how to do everything exactly right. All the motherly instincts that just happen with nurturing etc also happen as you learn the care of your special baby, and everything that they require will become your new normal, and your family can thrive in whatever circumstances your find yourselves in. Sending love and strength your way!! xo

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Susan Fossan

I am so excited to make these for my daughter. She is 45 years old and has had a J tube for 3 years. It took 2 years and Stanford Medical Center to diagnose her. It looks like she will always be using this to feed herself and the gauze covering has been a problem. The nutritionist at Stanford told her about these pads yesterday, and we are so excited. Thank you for letting the crazy world of concerned mamas know of a practical way help our kids whether they are tiny ones or big ones who we are still so eager to help.
We are going to be adjusting the size of both the outside diameter and the inside circle to accommodate my darling girl. Thank you for your sharing and caring.

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Miriam

I am so glad that you found this little tutorial, and your adjustments sound perfect! I hope they turn out to be as useful to you and your daughter as they were for mine! All the very best to you!

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Lauren

Thank you for posting this! Our 8 month old has a g-tube and I bought her some really adorable covers on Etsy, but I really wanted to make her some myself. Our little one has a submucosal cleft and a very small jaw as well as some other issues and was never able to master the suck, swallow, breathe. The g-tube has been a life saver for us and these pads are the perfect frame and skin protector.

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Miriam

Lauren I’m so glad ythis tutorial was helpful! More than any other diy I’ve done, I love connecting with people over this one. I remember being there with my little girly, the gtube changed our lives it was so wonderful. The very best to you and your daughter!!

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Joyce

Thank you so much. I had a j-tube placed 2 months ago and I have been using split gauze but all the sites out there recommend these pads. Especially since I am getting granulation tissue build up. I am a 36 year old with a tube and I would like to say that granulation tissue indeed hurts and anything to help resolve it is worth a try. It also helps the pain level to have something between the button and my skin. I am planning on getting out the sewing machine today and making these. The washer is an amazing idea. I couldn’t figure out how to get a perfect circle. Thank you.

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Miriam

Joyce I’m so glad you found this, and I really hope it works for you. I also really appreciate the insight into what it feels like! Good luck!!

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Courtney

My sweet baby boy just got his g tube about 5 days ago, he also has a cleft! I was just researching things about g tubes and saw your link! Thank you for posting this, I haven’t thought about something like this! Glad to read about this so I can go ahead and make these before his g tube site gets irritated (his skin is beyond sensitive)! Thank you!!!!

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Miriam

You’re so welcome! And just remember that although it can be intimidating in the beginning, it gets so much easier and a total non issue as you become the expert on it all. Soon the nurses will be asking you how to care for him. My very best, hope these little pads make it a bit easier!

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Melissa Strack

My daughter was born 12 weeks premature and after many challenges came home 13 weeks later. She forgot how to eat and at 15 months needed a feeding tube to survive. She still has a long road ahead as a 12 year old. She does eat and drink by mouth but also gets about one third of her calories via her tube. Her stoma looks pretty good most of the time thanks to flannel skin pads made by her Nana and applying Calmoseptine. The pink ointment is difficult to wash out but if you make your own skin pads it doesn’t hurt as much if you have to throw away a few. I do gather up all the pads and soak them in diluted bleach prior to washing. This helps to remove blood, stomach fluids and formula stains too. I still use a 2×2 gauze pad over the button held in place by Nexcare blue low trauma tape since I don’t need to access the tube all day long. She only has the extension attached during feeding. Thanks for reading!

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mish

Hiiii
Omggg thank u sooooo much for sharing this tutorial . Ive been meaning to order a few from ebay but they dont deliver to canada… bummerr!!!! I thought theres no way i can make any myself but yayyyyyy thank u so much for sharing this and making it so simple.
Im still new to sewing. How do u make the sewing machine go zig zag like that. What setting is it. And will my regular needle work? Or do i need a special needle?
Thank u so much for answering my questions 🙂
God bless you and your angel

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Miriam

I am always so glad to hear this particular tutorial has helped someone, it was a small thing that helped us a lot.

The zig zag stitch setting will usually have a little image that shows a zig zag, but it’s hard to say cause every machine is different. My best advice is ask someone who sews a bit, or maybe just google zig zag stitch to find some images that help. Wish I could help you more on that point!
You don’t need a special needle, a normal one will be perfect.
Best of luck and blessings to you and your family!

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