Shop Away, Newbie Tubie Style

Below are NewbieTubie Package shopping lists and links to our wishlists for items we are in need of right now! This list is current and we keep our wishlists updated based on supply!

We are so thankful for each and every donation, we truly cannot do this without your support and generosity! We are in need of donor support for products as well as for shipping fees to keep going, so share our posts to help us reach more donors so that our loyal followers and community don’t have to keep funding it 😉

Thank you in advance and please don’t hesitate to reach out with questions or suggestions on fundraising or other possibilities ✨

ETSY: https://www.etsy.com/people/rsb4fc/favorites/newbie-tubies-wish-list?page=3

AMAZON:   MAIN LIST: https://www.amazon.com/hz/wishlist/ls/1J7LHVRD4V3A6?ref_=wl_share

BUDDIES NEEDED: One fun way to get involved is to sponsor a button buddy! All you have to do is pick out a special stuffed animal we can use to create a ButtonBuddy for a special newbie

You can purchase a buddy online & add a note so we know who it is from, can share your name with the newbie (if you’d like), & can send you photos when we create the Button Buddy and send it out! 📬

https://www.amazon.com/hz/wishlist/ls/W9IXBH9TFV4A?ref_=wl_share

Sponsor a Book! https://www.amazon.com/hz/wishlist/ls/A2HGIE93P9BL?ref_=wl_share

Another fantastic donation option is purchasing a tubie-geared children’s book!

Whether they are for little tubies, little ones who have a parent, sibling, or friend with a feeding tube, or for a tubie to share with their classmates, youth groups, sports teams, etc to help normalize the idea of tube feeding and take away any feelings of fear or anxiety for both the tubie and their peers/loved ones, these books can bring so much joy, love, comfort, & self acceptance to a little tubie and their team.

Both toys and books are a way kids learn about the world & normalize, so reading about feeding tubes with young kids can make this incredibly foreign concept, meaning the tubes & the idea of “eating” through the tube on your belly – into something they are aware of, have a basic understanding of, and don’t consider to be icky or scary or weird. It’s just a feeding tube, it’s how some people eat, let’s go play now. How cool is that? Kids are truly incredible in how open they are to learning and how ready they are to accept new ideas, new experiences, how many different ways you can achieve the same goal. We should all be raised with open minds and warm, welcoming arms, we should all live to accept one another and our differences. Life is boring any other way.

PAY PAL: positivelyrachel101@gmail.com // VENMO positivelyrachel/positivelyrachel101@gmail.comi

Of course, monetary donations are always welcome and appreciated We are currently running on fumes fund wise, it keeps us from sending more packages out. So share our pages. Share your own story, that’s what people love to read. If we sent you a package, post about it! Did it make a difference? Share a photo, ask them to support & then share in honor of you✨

ShoppingList: NewbieTubies Supplies (forever changing inventory)

*TUBIE ITEMS- We always need tubie pads **, clips**, tracheostomy pads, and more! Our Etsy list is the place to go!

*BARRIER CREAMS – We need barrier creams (similar to diaper creams!) for our newbies to use – 3x antibacterial ointment and calmoseptine ex.

CHAPSTICK – We are out of chapstick and it is that season again! send us your favorite kind to share with a newbie!

FACE MASKS/Self Pampering- (Skin care masks, not surgical/COVID masks) We love including care items as well as spa/pamering items like face masks & epsom soaks and nail kits to let people do at home pampering post op! A little self care is always comforting & refreshing while recovering or admitted

FACE MASKS – AGAIN? We do love including surgical masks, so if you make cute COVID masks, send them our way!

Baby Bath & More – bath supplies, fun bath paints & crayons, fizzers, foams, etc are always great; also sponges, towels, bubble bath, and bath toys & bath books! We also use baby socks, chewies, musical fun, and all care items.

Onesies – Solid colored onesies – if you have any of these on hand or see them on sale, send them our way!

FUZZY SOCKS – who doesn’t love these? 

MINI GERM X – you can get these for 97C at Walmart as well as at any pharmacy or the dollar store! It is SO important that our recipeints have these while they heal, especially since they are having surgery during COVID19. So when you shop for yourself in person, for pickup, or online, add in a few for Newbie Tubies! Also on Amazon

Mini QTips- right by the mini germ x are mini qtip containers! We love these for every package so send them our way next time you see them! Also on amazon

Thank you to everyone who reads, shares, and donates to our efforts. You areall making a difference for someone who’s is in need of happy mail and love, so you can feel good about that. Sometimes giving feels even better than getting, and I can guarantee that this is one of those times 🙂

Strength for All; A NTCP Shirt Fundraiser

In October of 2017 I had my GJtube surgically changed into two separate tubes – a jtube and a gtube – after months of tube trouble due to my severe dysmotility throughout my GI tract. This surgery was insanely painful due to complications brought on due to my EDS, so my recovery was long painful, and during that time I relied on my parents for EVERYTHING. I couldn’t sit up in bed on my own, couldn’t walk, shower, brush my hair, or seemingly do anything else because all of these movements require abdominal contractions/tension and every time that happened I was in excruciating pain.

It was during that time that I began thinking about how lucky I was to have my 24/7 support team who were there for me always, no matter what, no complaining, and I just couldn’t bear the thought of anyone going through this alone, so I decided to be there for every tubie I could. Chronic illnesses are one of those “find out who your real friends are” situations and it can be brutal and shocking seeing who it is who puts the effort in, my goal is to step up and be that person when I can, but also to encourage others to do the same; so two years and lots of work later, over 300 packages have been sent out to first time tubies. 

To celebrate this milestone we’ve started a shirt fundraiser to raise money to contribute to Newbie Tubie Care Packages! 

Living with chronic illnesses or other conditions that cause one to be unable to eat enough to sustain themselves on their own and cause the need for a feeding tube is incredibly challenging, and that’s a massive understatement. Imagine life without your favorite foods , without the ability to go out for ice cream or coffee or a drink with friends, not sitting around the table and eating thanksgiving with your loved ones, having to come up with options not involving food for social gatherings or first dates, and explaining to people why you aren’t eating or what that little knobby thing on your tummy is.

Feeding tubes require incredible strength and self awareness, they are life changing, but they are nothing to be ashamed of, they are a gift that gives life back to more people than you would ever imagine – young and old, boys and girls, and due to so many different causes or conditions, feeding tubes are so much more than just a life sustaining piece of plastic, so join us in spreading awareness and celebrating year 2 of Newbie Tubies as well as the gift that so many of us are given through feeding tubes – the gift of nutrition, energy, and a life we may not have had without them.

Whether you’re a tubie or not, purchasing a shirt shows your support and love for tubies and contributes to our care package program that sends packages (free of cost) to first time tubies. No matter where your strength comes from, these shirts represent that strength.

We run on donations and these shirts are super cute, so it’s a win-win! You do not have to be a tubie to be Tubie Strong!  Purchase a shirt for yourself and wear it proudly, no shame, just strength and power in your self and appreciation for the gifts we often take for granted.

Thank you so much <3

*Link below! Currently open until Nov. 21st.*

**SHOP HERE!**

you can also donate to PayPal @ rajinone@aol.com or check out or wishlists on Amazon or Etsy!

Love & Gratitude,

Positively Rachel

Newbie Tubies turns Two!

In November we will hit our 2 year mark, I cannot believe it! We will also have sent out OVER THREE HUNDRED PACKAGES at that time! We have already had over 300 applications sent in and have filled at least 75% of those, how incredible is that? 

Unfortunately right now, Newbie Tubies has no remaining funds for shipping boxes or purchasing the extra items that aren’t donated, so in order to continue as we hope to, we need YOUR help to get there. 

We’ve had some incredibly generous donors who send us tubie pads, heating pads, supply bags, and other tubie products and we have shopping lists for amazon and etsy for easy online shopping as well as shopping guides for inexpensive items from target, walmart, & fabulous dollar store finds, but none of that covers the $14 shipping cost that each box costs, and I simply can’t afford to pay out of pocket for any more boxes.

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There are so many ways we can raise money, but I cannot do it alone! 

ALL of my artwork profits go towards shipping costs, so check out the shopping site as well as my facebook page to see the artwork that is available and supports this project! There are also vinyl bags, shirts, onesies, and decals that are made to support the project as well! I take commission for both paintings and vinyl so email me or message me if you have an order!

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True amazement and joy when the littles get a buddy, this single toy helps them feel confident and less “different” from others.

We hope to do a shirt fundraiser, so keep an eye out for that as well as for an upcoming raffle! Share our page and these posts so we can get as much attention as possible, every tiny bit helps.

If you are a recipient of a package share a post about what Newbie Tubies means to you, how it helped you and why it’s a cause to donate to. Hearing personal testimomy about what we do and why and first hand experience about the impact it makes can go far, so share that on your social media pages, email it to your doctors or family members and have them share it – let’s MAKE THIS HAPPEN TOGETHER! 

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My first package sent! Now I’ve sent over 20!

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A newbie tube with her matching, tube fed hedgehog!

I hate asking for monetary donations, but right now, I have to do so if I want to send out any more packages. If you have fundraising ideas or are interested in helping out in any way, I’m all ears. 

Thank you so much for reading, sharing, and helping in any way you can. We truly appreciate every one of you and you are making a difference for so many.

 

 

Information for donating and contact information:

Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/1J7LHVRD4V3A6?ref_=wl_share

Paypal: rajinone@aol.com

Facebook: Newbie Tubie Care Packages // Positively Rachel

IG: newbietubies // positivelyrachels_art

Email: positivelyrachel101@gmail.com

 

Chronic Illness Dictionary

New to the spoonie life? Are you the patient or a loved one/caretaker/friend trying to support a spoonie? We have a lot of chronic illness “lingo” that can be confusing to the “real world,” so I decided to create this list to help get some of these out there and easy to find 🙂 This list contains many of the common words and acronyms you will come across  but I’m sure I’m missing something! If you have other words/acronyms I missed, comment and I’ll add them in! I plan to do so as things pop into my mind, as well 🙂

And off we go!

  1. “Spoonie”- chronic illness patient; a term based on @TheSpoonTheory that aims to explain the level of fatigue we face as well as what simple, daily tasks can take so much energy from a “spoonie.”
  2. “Tubie” – a term used in the chronic illness world to talk about individuals who are tube fed; not an insult, we use it about ourselves and one another all the time.
  3. “Stoma” – the tube site, the area on your outer abdomen where the tube enters, and is used to keep it clean and comfortable as much as possible.
  4. “Feeds” – formula that goes through the feeding tube to sustain and nourish patients; “Time for feeds” is like “Time for supper!” except a lot less fun.
  5. Tubie Pads: similar to gauze but much cuter, used to help keep the tube site clean, healthy, and CUTE 😉

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Tubie pads donated by some of our VIP donors : @newbietubies @turkeytotcustoms @HomemadeTubieHappiness @DorkyLittleEtsyStore

  1. “Vent” – if you have a feeding tube that is in your stomach (gtube/gjtube/NG tube) you can “vent” it if you are nauseous or have air stuck in your gut (which doesn’t move). It is often done with a drain bag for gravity or a syringe for suction, which requires more caution – ick!
  2. A cental line ( hickman or port, picc line) – essentially a long term IV that is placed into a large blood vessel near the center of the body most often through your chest and ending at the heart; used for IV treatments like chemo or IVIG, TPN, medications, IV hydration, etc.
  3. Brain fog – cognitive dysfunction that comes with conditions like dysautonomia, ehlers danlos syndrome, fibromyalgia, etc. and causes severe problems with word finding, on the spot thought processing, short term memory problems and sometimes long term as well, lack of mental clarity and trouble holding conversations, etc. // People often say they feel that way too, that it’s normal when you’re tired, it happens as you age, etc., but if you felt the fog we feel as patients, you’d be very glad your fog is not what we experience.
  4. Motility (GI) – movement of the digestive system and its ability to move anything in there along with it throughout the GI tract. When there isn’t proper movement, undesirable symptoms can come up and you can be at risk for conditions like gastroparesis. Gastroenterologists who specialize in these conditions are called “motility specialists.”
  5. Flip/flipped – if you have a GJ tube  you can experience a “flipped” tube, this is when the j-arm comes up from the intestine and into the stomach, where it doesn’t belong. To fix this you have to have it rewired in IR.
  6. Tubie Friend” – a stuffed animal or a doll with medical devices to match your own, so feeding tubes, central lines, oxygen mask, etc.; these are incredibly comforting and meaningful for all ages.
  7. “Button tube” – low profile feeding tubes have an extension that can be removed, leaving only the “button” when you’re not using it! The other surgical tubes don’t have that option, and we usually call them “dangler” tubes or catheter tubes.26610760_10211000346221389_75216378_o.jpg

13. “leaker” – individuals with cerebrospinal fluid leaks

14. Zebra – a zebra is representative of rare diseases, sometimes patients refer to themselves and others with such conditions as zebras themselves

Acronyms you may come across:

NTCP: Newbie Tubie Care Packages

NP: Nurse Practitioner

PCP: Primary Care Physician

GP: Gastroparesis

EDS: Ehlers Danols Syndrome

POTS: Postural Orthostatic Tachycardia Syndrome; a type of Dysautonomia

MCAS: Mast Cell Activation Syndrome

NPO: nothing by mouth, long term or short term, often just 24hrs/overnight before surgery or certain procedures such as tube replacements, or even for fasting blood work

TPN: total parenteral nutrition, nourishment coming straight from an IV bag into your central line in order to stay nourished; can be short term or long term and is used as a last resort for dysmotility/gastroparesis patients who can no longer tolerate oral intake or feeds into the jejunum.

 

Types of Tubes:

GJTube: through your stomach and into the intestines; has access to both stomch and intestines

Jtube: a feeding tube that enters straight into the intestine; most complex and serious surgery out of the 3 surgical options, mostly used for those of us with severe dysmotility not just in the stomach, but also through the lower GI tract – small and large intestines/colon/etc. – and hence cannot keep the j-arm of a GJ tube “down” due to the lack of movement/pull.

Gtube: a tube through the abdomen and into the stomach directly, no lower access

NJ/NG: tubes going through the nose instead of the gut; usually used for short-terTm help for babies, individuals hospitalized, etc. or trials for feeds before surgery for G/J/GJ surgery.

 

*If you have any suggestions for words/phrases I should add, let me know- I’m always happy to have opinions from others 🙂 *

xoxo

Rachel

 

 

 

 

How and What to Donate!

If you’re here, I think it is safe to say you have some interest in this project, and I’m sure we can find something you would like

I have created a list of some of the possible donations we could use, however there are endless options and each package is different depending on age, gender, and interests of each person!

Right now (Jan 17) I have an 18 year old male, a 31 year old mom with two kids under age 4, and three girls between ages 16-19 who like either blue or pink, horses or dogs, and glitter or bows.

There’s lots of differentiation, but they appreciate anything I can send them that is comfortable, tube related, age-appropriate, or simple things that relate to their interests.

 

Newbie Tubie Packages

Donations needed–

Care package items:
(Get on amazon, dollar store, Walmart/target,etc)

-Bath bombs, bath salts, natural soaps
-Self care/pampering goodies (face masks, nice body wash or lotion, dry shampoo, etc.)
-Cute hair ties, clips, headbands
-Mini lotions, germ x

-Soft blankets, socks, stuffed animals
-Coloring book/pens/colored pencils
-Small toys and goodies for kids

-Makeup sized bags (fit in purse/backpack)
-Inspirational quote books/journals
-Goal books, guided journals

Medical/health related:
(Walmart, drugstore, amazon)

-Heating pads (rice/microwave), heating stuffed animals
-pill crusher, pill splitter

Tube supplies:
(Found on Etsy, online)

-Tube clips (for long tubes)
-Cute medical masks
-Heating pads
-Tube belts
-Tubie pads

 

Pending projects

-I hope to begin making tubie friends, what we need for that –Sterile, unused button tubes, extensions, long tubes, etc.
other items used include stuffed animals, superglue, needle and thread — we have most of these, just need the tubes!

 

Anything else that will fit in a care package or help make a tubie feel more comfortable post-surgery/during their transition to tube feeding!

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I also accept re-gifting! If Christmas brought too many fuzzy socks and coloring books or one too many scented candle and bottle of the same old lotion, I’m happy to take anything off of your hands that you just wont use!

Spring cleaning brings about lots of unwanted (and unused) items. Donating to my project doesn’t usually come to mind first, but ewe appreciate these items, we need these donations as much or more than other organizations who take such items.

Just keep us in mind for your extra, package sized goodies.

Positively Rachel Art & Design: Sales for my own artwork and products I create are another fabulous option!  You can help us by purchasing a painting! Decorating your house can help us send a package to a new tubie! All profits go towards shipping and shopping costs for newbie tubies!

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If you are interested in making a monetary donation, my pay pal account is: rajinone@aol.com

You can contact me at positivelyrachel101@gmail.com  if you have any questions, want to mail or drop something off, etc.
For more information about ways to help with the project or just about how it came about, please check out the blog titled “The Start of Newbie Tubies” 🙂

Thank you!