New Diagnoses and Grief

Grief is a normal, natural reaction to getting a new diagnosis. I recently wrote about my own reactions to a new, unexpected diagnosis over at Teddy’s blog.

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Recently, my kiddo’s picked up a fair number of new diagnoses. Three were not surprises, one was. Sort of…

And I’m full on going through the five stages of grief over this.

And it’s ok.

I think, too many times, special needs and/or medical needs parents feel like the process we go through when we get a new diagnosis is weird or unacceptable or weak. But it isn’t.

It’s grief.

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Read the rest of this article over at Teddy Bear’s Journey.

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Somebody Asked…What are the benefits of a two piece diapering system?

At Wallypop, we primarily make – and champion – fitted diapers with covers. Somebody recently asked us about the benefits of a two piece diapering system over something like pockets or fitteds.

There are so many.

What is a two-piece diapering system?

Let’s start by defining a two piece system. A two piece diapering system consists of either a fitted diaper plus a cover, or a prefolded diaper plus a cover. The absorbent part and the waterproof part are completely separate.

Customization

Since the absorbent part and the waterproof part are completely separate, you can easily adapt your diapering system to fit your needs. Do you need super absorbency and breathability, and prefer natural fibers? Use an extra absorbent fitted diaper with a wool cover. Need something super trim? Pair a trim fitted with a thin PUL cover. Is your child a super wetter? Nothing beats the overnight pee-a-thon like a fitted plus fleece cover.

Fit

Two piece diapering systems typically are sized – just as Wallypop’s Perfect Size diapers. This allows a superior fit over one-size diapers, and reduces leaking issues.

Cost

Believe it or not, two piece diapering systems are actually usually LESS expensive than pocket diaper systems or all in one systems. First, covers can be worn several times before they need to be washed, so you don’t need to change both pieces every time. Second, they just simply cost less, generally speaking. Woot!

Reuse

As mentioned above, you need to own fewer things overall, because you don’t need to change the cover every time you change the diaper. Make your cloth diapering even greener!

Absorbency

A two piece system can easily be made more absorbent to suit your needs. Pockets and All in Ones can be hard to stuff with enough absorbency, but it’s easy to increase the absorbency of a fitted diapering system – either purchase more absorbent fitteds (we make extra absorbent fitteds especially for those heavy overnight pee-ers), or simply add doublers – the cover will still fit snugly over the diaper without gaping around the legs, as can happen with pockets and all in ones.

Drying Time

Because they are a two-piece system, fitteds with covers tend to dry faster than all in one diapers.

Natural Fibers

Fitted diapers are made with all natural fibers, and if you prefer to use 100% natural fibers, you can use wool covers.

Easier to Wash with Less Stink

Two piece diapering systems tend to be easier to wash and experience less stink as a result. All natural fiber fitteds don’t require any special treatment in the laundry, and most covers can simply be washed and set out to dry. (Wool covers DO require special treatment!)

There you have it! If you’ve never tried a two-piece diapering system, we’d encourage you to give it a try. Wallypop fitteds and covers are an affordable way to diaper your baby!

Simplify Your Life as a Special Needs or Medical Parent

Life as a parent to a medical or special needs kiddo can sometimes feel overwhelming! You’ve got regular parenting things to do. Regular adulting things to do. And then you’ve got a whole additional career as a nurse/doctor/therapist/care provider for your kiddo. And, of course, the ever-present need to do some self care, which everyone agrees is important but nobody seems to want to actually help make happen. Right?

The fact of the matter is that we’re all humans. Humans have a limited supply of time and energy. A disproportionate amount of our time and energy as parents to medically complex or special needs kiddos goes to our medically complex or special needs kiddo, leaving a smaller-than-most-people’s amount left for all the other things, particularly the regular adulting type things.

So the first step to simplifying your life is…

Recognize that you have to be purposeful about how to spend your time and energy.

I remember back before I had a medically complex child. I could just willy nilly decide to completely rearrange our closets. Or whatever. But these days, I just don’t have that same amount of energy, because I spend a large chunk of energy on keeping another human alive, and being interrupted constantly by the various urgent needs of the human I’m trying to keep alive. (I am trying to keep ALL my kids alive, obviously, it’s just that one of them needs a bit more parental involvement!) I have to be purposeful about how I spend my time and energy, if I want to be sure to have enough for the important things – not just the keeping-the-child-alive things, but the being-a-fun-mom things and the being-present-for-the-other-kids things.

Separate the Necessary from the Feels Necessary.

Think through the things you do or think about regularly. Which ones are REALLY necessary? Which just feel necessary? Only you know which task goes in which pile, but it’s too easy fall into the trap of categorizing not really necessary things as “necessary” because they FEEL necessary. Doing my kiddo’s meds is necessary. Vacuuming the rug is not (usually) necessary.

One way to help you sort your “things” is to ask yourself “what are the consequences if this doesn’t get done?” If I don’t pay my bills, I have to pay late fees, or I have my water and electricity shut off. Paying bills is necessary. If I don’t dust the mantle, I have dust on the mantle. Not necessary. If I don’t cook dinner for one night, our family will survive. People will find something to eat. If I never cook again, our family will have poor nutrition and perhaps start losing weight. Cooking is not necessary, but ensuring everyone eats healthy food IS necessary. If I don’t mop the floor, I have a dirty floor. Mopping the floor is not necessary. (But when my son was immediately post transplant on high doses of immune suppression and rolling around on the floor licking things, vacuuming the rug and mopping the floor was a lot more necessary.)

I want to note, there’s a category of “not necessary” things that are things that bring you joy. I have a friend who loves baking bread from scratch. It isn’t necessary, but she enjoys it. These “not necessary” things should, in moderation, be considered to be just below the “necessary” things in importance. They’re important to your mental health.

Do the necessary things first. Do the not necessary but I love them things next. Do the not necessary things if you have leftover time and energy.

Eliminate, Streamline, and Delegate

Thinking still about all your “things,” what can you eliminate entirely? What can you streamline? What can you delegate?

Are there things on that “not necessary” list that can be eliminated? Your spouse’s workplace’s annual picnic that always stresses you out, for example? This year, just don’t go. Make up an excuse if you need to. Making the bed? Not necessary. Eliminate it, unless having a neatly made bed brings you enough joy to be worth the time and energy investment.

What can you streamline? Laundry? If your family has enough clothes to make it a week, consider only doing laundry every week. At our house, we wash laundry one day a week – my ten year old actually does this. It’s several loads, but it’s not so much that it can’t get done in one day. Then the next day, I fold it all. It takes an hour or two, but I set aside the time, put on a movie, and get it done. This is a much more efficient use of time and energy, compared to carrying laundry down and up the stairs daily, having to fold daily, having to walk to all the bedrooms daily, etc. (And, to be really honest, folding could be eliminated, as well. Plenty of families just dig clean laundry out of a laundry basket without any long term damage!)

Paying bills can usually be streamlined. First, as every bill comes in, we check the due date, and then put the bill into a folder marked BILLS that lives in the kitchen. We’ve shuffled due dates around over the years so I only have to sit down to pay bills once a month, unless the odd, unexpected, due-before-the-next-time-you’ll-pay-bills bill pops in. I have Pay Bills as a recurring event on my to do list, it pops in every month, and this is literally the ONLY time I think about bills. I only have to log in to the bank website once a month. I only have to sit down with that folder once a month. I only have to THINK about bills once a month. In reality, if you aren’t as much of a control freak as I am, you could streamline this further by just having all your bills – or as many as possible – auto-pay.

Really, any task that is regular and ongoing can usually be done a bit more efficiently by doing it in larger chunks – but you need to decide for yourself which way is easier – not just physically, but mentally. We don’t have a dishwasher, so we hand wash dishes. This would be more efficient if we let them build up for a few days… but seeing dirty dishes stacked in the kitchen makes me feel gloomy, so we wash dishes daily.

And finally, what can you delegate? I’ve had a handful of things over the years that I’ve just had to sit my husband down and say, “ok, look. I can’t do this thing any more. I need you to do it.” Washing dishes, for example. It used to be my job and then my daily task list with our medical kid just got too long, and now it’s his job.

I also highly recommend having older kids, lol. As my other kids have gotten older, they’ve taken over a LOT of my tasks for me, for which they are paid an allowance. It’s definitely convenient!

Make your Necessary items Easier

This requires some out of the box thinking sometimes. I have to get my oil changed, but I don’t have to be present for that to happen. I can use a facility that comes to me, or I can use a facility that will come get my car.

I have to feed my family, but I don’t have to cook every meal from scratch. I can do take-out, I can do meal kits, I can buy pre-cut vegetables, I can buy healthy meals that are half prepared from the grocery store. My community also has several options for services that allow you to purchase full, made from scratch meals.

Keep a To Do List

Make a list of all those “feels necessary” things that you were unable to eliminate or delegate. See, we’re not going to just not do them. Obviously, you can’t go forever without mopping. We’re just not going to worry about them quite as often, and we’re not going to waste energy thinking about them. Write them down. Make a list. Post the list somewhere. Every day (or week, whatever works for you), take 15 minutes and work your way through the list. Set a timer. When the timer dings, you’re done. Next day (or week), start where you left off. See – those things will get done. But they don’t need to take up your mental energy any more.

Say No

It’s OK to say no. Even to your own kids. Sometimes kid activities fall into “feels necessary” but they aren’t really necessary. You don’t have to let your kids sign up for tons of activities. One activity per child is plenty, unless one of them drives and can drive the others. If you’re the only driver, you have to take an honest look at yourself and your schedule and decide if you have the stamina.

What about extra family commitments? Aunt Bertha’s going to be in town and the whole family wants to plan a weekend full of activities!! It’s OK to say no. Or to say yes, but only for an hour.

What about literally everything else? Say no. Next time you’re asked if you’d like to serve on x group, or commit to joining y activity on an ongoing basis, just say no, unless you’ve really thoughtfully considered it and decided you do have the time and energy. It’s OK to say no.

Take A Break

If you’re feeling really snowed under, it’s OK to take a break from things, instead of fully saying no. Tell your book club you won’t be there for a few months, but you’ll be back in October. Tell your child’s therapists that you need a break for a month or two. Reschedule flexible appointments like eye exams. Sometimes taking a month (or more) long break from the daily grind is just what you need!

Get Organized

I feel like this piece of advice is almost worthless. Those of you who are naturally organized are already organized and those of you who aren’t, aren’t likely to become so. There are countless books, blogs, etc., about getting organized if you’re interested. Having a good system set up for records, for appointments, for medical supplies, etc., saves you time in the long run, and also helps you avoid mental clutter. If you always keep necessary paperwork in the same spot, you don’t have to waste mental energy stressing about where you put whatever piece of necessary paperwork you suddenly need.

Essentials Only During Crisis

During a crisis, pare down to only the essentials. Put off everything that isn’t vital. Afraid you’ll forget something entirely if you don’t handle it right then? Get yourself a file folder. Put everything in it, and write yourself a list on the outside. If it’s something with a deadline, write that in your calendar. Then you can stop thinking about it.

Take Advantage of Slow Times

BY RESTING FIRST! This is something I almost never do, but that doesn’t make it bad advice. When you have a slow period – things with your kiddo are going smooth, no new crises, etc. – REST FIRST.

When you’re all rested up, that’s when you can play catch-up on all the things you neglected during a crisis. Go find that folder where you stashed all the things, and start dealing with them!

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I hope these tips will help you find some peace by simplifying your life a little. Take what you can use, leave the rest.

Blended Diet Hacks

Have you decided to blend up real food for your feeding tube, or for the tubie in your life, instead of using commercial formulas? This is usually a harder path to take, without a lot of support from medical personnel. Here are some tips your nutritionist or doctor probably didn’t tell you – and probably doesn’t know.

1. Modify the Bag

If you run your blended food through a feeding pump, first, choose an Infinity pump. Infinity works SO MUCH better for blended diets than Kangaroo. Second, if you’re experiencing a lot of alarms and troubles getting the feed through the pump, modify the bag by snipping off the flow limiter.

Look at the cartridge part of your feeding set (the hard plastic part with the blue). One of the blue tubes has a picture of a drop of water on it. Pull that off. Underneath, you’ll see what’s in the picture. See the part I circled? It’s like a little knob? Cut, snip, or break that part off. (I prefer to just bend it back and forth until it breaks off.) Reassemble the cartridge. Voila.

2. Cap your syringes

We wrote a whole blog post about this! Many 60 mL syringes don’t come with caps, which is a shame. But you can use old extensions (clamp them shut near the part that connects to the syringe, cut off the extra) or even the caps from your feeding sets, if you also use a pump.

3. Insulated Tote To Safely Carry Filled Syringes

Wallypop's syringe tote

Formula is much easier to carry around. It’s shelf-stable. But actual food isn’t – particularly not when blended up. Many feeding tube users find they prefer to carry their feeds already drawn up into syringes for feeding on the go, rather than carry a single syringe and a jar or bottle full of food. Refilling syringes can get messy and usually requires more of an interruption to your day, whereas bringing prefilled syringes reduces the hassle factor quite a bit. If you find you prefer toting prefilled syringes, our Syringe Tote is for you. I’m so excited about this newer addition to my line of feeding tube accessories! It’s double-insulated, has two large compartments inside, and one small compartment, and it’ll hold 5-6 60 mL full syringes plus an ice pack and small accessories like a 20 mL syringe, Gtube cushions, a few predrawn liquid medications, etc.

4. Know your extension

shows three types of extensions

Some people feed their blenderized diet directly into the button using a slip tip syringe. Some people prefer to feed through the more typical Y-Port extension. But many tube feeders prefer one of the two single-port (or bolus port) extensions – the right-angle bolus extension or the straight bolus extension. I personally prefer the right angle bolus extension for pump feeding (no med port to pop open) and the straight bolus extension for syringe feeding (requires less pressure, in my opinion). Get a few of each from your DME and see what you like.

5. O Ring syringes

a miracle syringe

Regular rubber-plunger syringes stop working after a VERY short period of time. Many blenderized diet users prefer syringes with an O-ring instead, such as the Miracle Syringe. These syringes are often sold by stores that cater to squirrel rehabbers. O-Ring syringes are also sometimes available through DME suppliers, so be sure to ask before you pay out of pocket. Miracle Syringes are Catheter-tip, but you can also get adapter tips to make them into a slip tip if you prefer to feed directly into the button, without using an extension. If you use EnFit, NeoMed makes O-Ring EnFit syringes that you can get through your DME or online medical supply stores. Why bother with getting an O-Ring syringe? They last forever and glide like an Olympic ice skater. I bought a handful of syringes in 2013. I still use them. They still work like a dream.

6. Oil Syringes

If O Ring Syringes aren’t an option for you, you might notice that the rubber plunger syringes provided by your DME start to stick after a very brief period of time. Putting some oil (olive, coconut, any food oil) on the plunger will help keep it sliding smoothly – some people prefer to dip the entire plunger in oil, while others prefer to just slide a few drops down the inside of the syringe.

7. Don’t open RFB all the way

If you use Real Food Blends, don’t open the packet completely! If you’re filling syringes, just open a corner of the packet, and stick the syringe in. If you’re filling a feeding set (bag), just open a corner of the packet and you’ll have more control over where that food goes – and it’ll be easier to squeeze out every last bit.

8. Get a longer hang time with an insulated bag cover.

So many nutritionists and doctors shoot down the idea of a blended diet solely on the basis that the food can’t hang at room temperature for long. And they’re right – it can’t. But it’s like they’ve never heard of insulation and ice packs. Insulated covers plus an ice pack for your feeding sets allow you to have a longer safe hang time – even all night without having to refill. They also will let you carry a feed all day at a safe temperature without having to refill. These really make tubie life just so much easier.

9. Fill pouches with syringes, Fill Syringes with Pouches


Some blended diet users like using baby food packets (either single use or resuable) to carry their blends. Yes, some makers of empty baby food packets sell fancy, expensive equipment to fill the bags, but you don’t need that. You, you lucky tube feeder, have access to syringes! Use your 60 mL syringes to fill the pouches. And then when it’s time to feed, if you push with a syringe, do the reverse – stick the tip of the syringe in the pouch’s opening and pull back on the plunger while gently squeezing the pouch from the bottom up. Easy, and no mess!

10. You do You: junk food, batch/meal, healthy, regular diet

There are so many ways to tube feed, and so many ways to approach a blended diet. You do what works best for YOU. Don’t worry about what Suzie on Facebook does. If you/your tubie doesn’t have any special dietary needs, and if they’d be eating a typical diet if they didn’t have a tube, there’s no reason you HAVE to do anything special just because they DO have a tube. Even with most dietary restrictions, most oral eaters don’t create spreadsheets to manage their daily intake.

If you want to feed chocolate cake through the feeding tube (and there aren’t any legitimate medical reasons not to), go for it. Regular people eat junk food occasionally, and tubies are just regular people who eat via a different route. Does it make more sense to you to bland up a whole day’s worth of food at once? Or a whole week’s? A whole month’s? Do it (use safe storage methods). Does it make more sense to you to blend per meal, just blending up what you’re cooking for everyone else, or what you’d typically cook for yourself? Do it.

Do you want to have your blended diet be super healthy? Go for it. Do you want to serve just a regular, every day, American diet? Go for that. Do you want to make a huge spreadsheet to track every calorie and every micronutrient? Do it! Do you want to never ever do that? Unless there’s a medical reason you need to, don’t!

*obviously, a certain portion of tube fed people DO have dietary restrictions, ranging from issues with food allergies to needing a renal diet, to being unable to digest most foods. Please use your common sense here.

11. Squeasy Gear

I don’t personally use Squeasy Gear, so I can’t provide any sort of personal recommendation, but many blending families swear by it for easy storage and portability of blended feeds.
graphic showing squeasy gear benefits.

12. Sharpie scrubs off glass

If you store your blends in glass jars, use a sharpie to label them. So many people try to use crayon, or stick on labels, or dry erase marker. Just use a sharpie. It won’t rub off… but when you wash the jar, your kitchen dish scrubby will take it right off.

19 Feeding Tube Hacks to Make Your Life Easier!

Are you new to tubie life and overwhelmed? Maybe you’re a long-time feeding tube user, but looking for some new ideas? These essential feeding tube hacks will make life with a feeding tube just that much easier!

Some are specifically for pump feeding, some are specifically for bolus feeding. And – we’re working on a future list JUST for blenderized diet hacks!!

1. Modify the bag

If you use an Infinity pump, you can turn your feeding set (the bag) into a gravity set with this hack. (A gravity bag allows you to feed using just gravity, no pump.) This modification also allows you to more easily feed a blended or thicker diet through the pump with fewer alarms and clogs. Look at the cartridge part of your feeding set (the hard plastic part with the blue). One of the blue tubes has a picture of a drop of water on it. Pull that off. Underneath, you’ll see what’s in the picture. See the part I circled? It’s like a little knob? Cut, snip, or break that part off. (I prefer to just bend it back and forth until it breaks off.) Reassemble the cartridge. Voila. WARNING: If you’re feeding a liquid, it will now run straight through the tubing with nothing to stop it.

2. Snap front sleepers

If you have a little Tubie, quit buying expensive modified clothing, and quit cutting holes in your baby’s clothes! Just buy some regular, off the shelf, snap-front sleepers or one-piece outfits. They are made by Carter’s, Kushies, Burt’s Bees, and I found a variety of other brands on Zulily and Amazon just now. These can be harder to find in larger sizes, but Carter’s makes snap front bodysuits up to 24M, and they also make little rompers (short sleeves/shorts). Burt’s Bees one piece long sleeve/long pants outfits seem to go to either 18 or 24 months, as well. Much past 2T, it’s hard to find one-piece outfits at all, but overalls allow easy access while still keeping the button or PEG covered.

3. For nighttime, route the tube up the pants leg.

Got a slightly bigger Tubie? Many parents find it’s best to route the feeding tube up the child’s pants leg at night and position the pump either near their middles or near their feet. It not only keeps the tube away from their neck at night, but helps keep things less tangled as they roll around.

4. Make any backpack into a Tubie Backpack

You can use Cord Clips to attach your feeding set (either on its own, or inside an insulated cover) to any backpack. We find we have fewer alarms if we then set the Infinity pump on the side opposite where the tubing goes in and out, and then route the tubing out the backpack where the zipper opening is. No special, expensive backpacks necessary. Use whatever you have onhand, or buy a normal backpack!

5. Get a longer hang time with an insulated bag cover.

Insulated covers for your feeding sets allow you to have a longer safe hang time. Add an ice pack, and most of the time, you can safely hang a feed all night without having to refill – or carry a feed all day at a safe temperature without having to refill. These really make tubie life just so much easier.

6. Prep and label meds and feeds

If you feed bolus via pump, you can prefill the bag (or multiple bags for the day if you have the supplies) and label it with the time the feed is to be given using a Sharpie. We always store our feeds in glass jars (even back when he was on all breastmilk) and label the jar with a Sharpie. Sharpie washes right off glass jars with a scrubbie. (In the case of breastmilk, I labeled with date pumped, volume, and whether it was fresh or defrosted.) If you have liquid meds to be given at different times, check with your pharmacy, but many meds can safely be pre-filled in syringes. Find some containers, label them with either the time the meds are to be given, or with the name of the meds – whatever works best for you.

Some meds may need to be kept in the dark – in this case, cover your cup with a dark container. Some meds need to be kept in the fridge. I didn’t take a picture, but I have a set of labeled cups in the fridge, too. And some meds cannot be pre-filled in syringes. For those meds, I find it works easiest for me to put an empty syringe in the cup, then add a note to the cup, in the form of another label with the medication name. Then at med-time, both the note and the empty syringe remind me to draw up that med, and having the empty syringe right there with the other pre-dosed meds means I don’t have to take the extra step of reaching over to the empty syringes box. Which doesn’t sound like a particular hardship, but I prefer to cut out extra steps whenever possible!

PS, I keep my cups on top of our dorm fridge, which sits on the top shelf of some baker’s shelves in the bedroom. They’re at the top of my reach, and safely out of reach of the kids. Because it’s so high, I a) literally never see the top of that fridge, which is how I never realized it’s kind of dirty  b) toss empty syringes into the “dirty syringe” bin there behind the cups, evidently spattering bits of medications across the wall directly behind the bin, and across the top of the fridge. I guess you might want to avoid this by PLACING your used syringes into your Dirty Syringes bin, instead of throwing them like you’re on the all-star basketball team.

7. Dirty Syringes Bin

If you can at all avoid it, don’t wash (medication) syringes every day. (Wash food syringes every day!!) If you’re new to liquid medications, it might take you a while to build up a large enough stash of syringes to wash weekly. I personally just bought a pack of each size of syringes that we use regularly from a medical supply store (actually it was a vet supply store, but they’re the exact same syringes humans use) so I have a gajillion of them, but you can build up a stash just with what the pharmacy gives you (always ask for extras!) Put your used syringes into a Dirty Syringes Bin, and wash either weekly or when you run out of any particular size of syringe and need more.

Caution: keep a watchful eye the first several times you do this. We have found a few medications that even just that bit left in the tip of the syringe would get really gross sitting around for a week. Syringes with those meds need to be rinsed out same day. Most of the time, though, a good soak in hot soapy water loosens up any sticky meds, and a few good swishes of soapy water and then a good rinse clears out any leftover meds, even if they’ve sat around for a week. I really hate washing syringes, but having a whole bin means I can kind of get into a zone with it.

8. Give syringes a longer life with nail polish

Syringes tend to have one of two problems. Either the rubber tip stops functioning/gets stuck/breaks, or the numbers wear off. Cover those numbers with clear nail polish, and you’ll give your syringes a much longer lifespan – and you’ll dose your medications more safely over time!

9. Tote prefilled syringes with insulated ease

Do you feed Bolus feeds? One way to make that easier when out and about is to prefill your syringes, and then carry them in an insulated case. This avoids having to fill syringes away from home, which can get messy and inconvenient, and it’s faster, too!

10. Getting supplies you didn’t even know existed

When you’re inpatient, if you see the hospital using supplies you don’t get at home but seem super helpful, you can do two things, neither of which involve stealing. First, ask them if you may take whatever it is. If it’s disposable, chances are they’ll say yes. We’ve never had a hospital turn us down when we asked to save something noninfectuous that they were going to throw away. Second, ask for the REF number. Then ask your supply company if you can get some. Using the REF number helps your DME find the right part.

11. Command Hooks

Command hooks are so very very handy if you use feeding sets with your tube. You can stick one almost anywhere you might want to hang a bag. Some people use Command hooks next to the bed, put the feeding set and the pump in a backpack, and hang the backpack from the hook for overnight. Some people – including us – use Command hooks in other places around the house. For example, we almost always do a feed while doing school (we homeschool) so I stuck a hook next to my tubie’s spot at the table. You can hang just the feeding set and place your pump on a nearby flat surface, or you can put the feed plus pump into a backpack and hang the backpack.

12. Carabiners

Carabiners are the other magic way to hang a feed. We use carabiners (or Velcro ties) to hang feeds in the car (from the carseat, from the headrest, from the grab bar above the door), in places where a Command hook won’t fit (backs of chairs), and from the stroller.

13. Prime the Infinity without a pump

One thing about the Infinity pump – it primes SO SLOWLY. Prime faster with a manual prime – before you load the cartridge in the pump, find the blue part with the water drop on it. Push it inward as shown in the picture. Hold the bag up in the air. Voila. Instant priming.

14. Clean your extensions easily

First, if you do continuous feeds, flush the tube regularly. I think the recommendation is to flush with water every 4 hours. This will help with food/formula build-up in the extension. If you bolus, you should already be flushing after feeds.

The easiest way to clean extensions is to fill a container with warm soapy water, attach a syringe to the extension, and pull, push, pull, push a few times, then rinse. I like to follow up with a good, strong squirt of water to the part where the syringe connects.

If that isn’t cutting it, use vinegar, then soapy water, then a rinse. Still not clean? Fill the extension with vinegar and let it sit for a bit.

Many people swear by squeezing the clamp but not quite shutting it all the way and pulling it up and down the length of the extension – it provides enough friction to get those stuck-on bits. You can also get extra long pipe cleaners, but you might find that using the cleaning brushes they sell for hydration backs that backpackers and other use is both easier and faster.

I need to add that the addition of EnFit makes cleaning extensions a bit more challenging. EnFit manufacturers recommend cleaning the moat areas with either a toothbrush or a specially designed EnFit brush, because you need another thing to keep track of. We haven’t switched to EnFit, so I don’t have any direct experience with this.

15. Cap 60 mL syringes with old extensions

Do you use 60 mL syringes for bolus feeds or flushes, but your syringes don’t come with caps? (First, how is this even a thing? Shouldn’t all syringes come with caps. Tubies need to go places, too!) Use old extensions. Just clamp and cut off the extra. Throw some superglue in there if you need to feel extra secure.

16. Use your phone alarms

Having trouble with missing feeds or medication times? Get yourself a dedicated alarm app just for tubie things if you like, or just use whatever app you use for your other alarms. Pick a dedicated alert tone JUST for feeds and meds (or one for feeds and one for meds, which is what I do). Then set an alarm for every medication time and every feed time. And DO NOT clear the alarm until you’ve started the feed or administered the medications.

17. Know your extension

Top – Y-port Right-Angle extension. The top end has a Y-port (one for feeds, one for meds – or if you’re using Enfit extensions, both ports are identical) and the end that connects to the button is a right angle. This is a narrow-gauge tube. This is what most supply companies send you by default, but you do have other options.

Middle – Bolus Feed Right-Angle extension. The top end has a bolus feed opening (or for EnFit, it just has one Enfit port) and the end that connects to the button is a right angle. This is also a narrow-gauge tube. This is my personal favorite for pump feeds. I use the Yport for medications, and then switch to the Bolus right angle for pump feeds. There’s no medication port to pop open.

Bottom – Bolus Feed Straight extension. The top end has a bolus feed opening (or the one EnFit port) and the end that connects to the button is straight. This is a wider-gauge tube. This is my favorite for syringe feeds. It makes pushing SO MUCH EASIER than trying to use the tiny right angle tubes, in my opinion.

18. Keep those connections secure and covered


Med ports can pop open. Curious little fingers can pry them open. Adults with dementia or other neurological concerns can absentmindedly – or purposefully – pull the tubes from the extensions, or pop open the med port. You can tape things together and tape the extra ports closed, depending on your situation. You can also purchase connector covers (they’re available in several styles – I like our own style, obviously, but there IS a variety of styles available – including hard plastic ones) that snap around the connections to keep them padded, safe from fingers, and safe from accidentally bumping open.

19. You don’t have to hang the Infinity bag

Though I’ve given numerous tips for hanging feeding pump bags – you actually don’t have to hang the Infinity bag. After you’ve added your feed, prime out all the extra air (hold the bag upside down and prime the tubing using the pump – this will go faster if you squeeze out as much extra air as you can when you put the cap on the bag), then lay the bag on any available flat surface. Infinity doesn’t need gravity like the Kangaroo bags do, so you can lay them down instead of hanging.