Category: Feeding Tube

Feeding Tube, Mental Health, Micropreemie, NICU, Parenthood

The One Thing That Made Me a Happier Tubie Mom

by admin July 2, 2019

Whether you are a new tubie mom or a mom with many moons under your belt, I think we can all attest to the fact that tubie life IS HARD.

 

 

It’s hard not only for the many reasons that can lead to our babies having a tube (e.g. countless uncertainties and diagnoses, numerous hospital/doctor visits, food aversions, weekly therapy appointments, etc.), it’s hard because it isn’t what we thought motherhood was going to be.

None of our daily routines look like what we envisioned and it’s frustrating beyond words some days. Gagging, vomiting, severe food aversions, are all a reality for many of us and it’s mentally and physically exhausting.

My little L had her gtube placed while in the NICU and we were nervous but we were so excited to finally have our babygirl home.

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My tired exhausted self enjoying some snuggle time.

To say it was a learning curve is an understatement. Unbeknownst to me, this was going to be one of the hardest journeys second to the NICU.

My husband and I were exhausted from the regimented feeding schedule and all the processes that accompanied tubie life. Clamp, meds, unclamp, flush, clamp, beep beep, clamp… repeat. Sound familiar?

Not to mention I was pumping around the clock and dealing with wretched clogged milk ducts every single day.

And….. our L vomited A LOT. We were told to keep offering her the bottle, and if your babe was anything like ours, it was a struggle each time.

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Precisely how we all felt about feeding time. 

We would not only pour our energy to do all the tricks to get her to eat but we also poured our hearts and hopes, only to be disappointed 95% of the time. She never drank more than 30ml at one feed and this was rare.

But then, she’d puke that up more than half of the time.

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L’s first time drinking 1/2oz for us. Yes, she did puke it up shortly after…

I was exhausted and overwhelmed.

I remember crying in disappointment, not in her, but in me. Why can’t my girl eat? What am I doing wrong? Why is she puking all the time?

Then I remember crying in anger. This can’t be a good life for her! Why is this happening to us?? Why is she puking?! Why won’t she just eat??! Why can’t the doctors or therapists help us!?

Then after hours of researching, I would feel encouraged to find a solution. If only I did x, y, z, then that’ll fix everything.

Only to find that it wasn’t… again, my hopes were crushed and I felt discouraged many days.

As you can see, motherhood for me wasn’t the joyous time everyone protested it to be. Don’t get me wrong, I love my girl more than anything but I felt so angry all the time.

Until, I did this.

I was in one of my lows with tubie life. L must have puked 5-6 times that day and I was exhausted from cleaning up vomit and smelling like it. I was tired of being house ridden because we were afraid of the pukery in the car or in public.

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L with her infamous puke bucket

After my boo hoo cry, I remember thinking, this isn’t a good life for ANY OF US. I was so stressed out, my marriage was on the rocks, and I knew my girl could feel it.

Then it hit me. I don’t want my L to grow up thinking all she is worth is whether she can eat or not. So I had to stop focusing so much on that. Read that again.

There is so much more to L than her ability to eat. She was cooing, smiling, shaking toys. She had come so far from her little 1lb 10oz self. But if I wanted her to grow up knowing how amazing she was/is, then it had to start with me.

I had to make the shift from “Did she eat? How much? Did she puke? Oh nooo!! Dangit! How was she positioned? What is wrong now?” to

“Oh, she tried some! Cool.”

“As long as her food experience is positive.”

“Look at everything else she is learning.”

“She’s alive, I’m alive.”

“So what if she has a tube all her life? She’ll be quirky as all hell.”

I want L to have a healthy relationship with food. Not a stressful one. So again, this has to start with me.

Once I made this shift in my thinking, it was life changing. It wasn’t an immediate 180 but I felt so much more peace. Feedings weren’t as stressful anymore. There wasn’t this undue pressure 6-7 times a day. I was more able to enjoy motherhood and my marriage again.

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And, coincidentally or not, she started to drink more or at least allow things in and around her mouth without gagging and puking.

Even as a licensed therapist I struggled with tubie life… it took me 6+ months to get to this place and I needed this perspective change.

This isn’t to say I gave up trying to find out the source of her vomiting or inability to eat, but there wasn’t this pressure to figure it all out right then and there.

There were still moments of disappointment and frustration but they became less intense and less frequent with time and practice.

This was a new way of thinking and like any other skill, I had to keep practicing to become better at it..for it to become second nature.

Your brain is like a muscle, and the way you think is a skill. Learning something new will take time and practice for you to be good at it.

So allow yourself some grace as you learn a new way of thinking. Allow yourself to feel what you feel but gently nudge yourself to think differently, to believe differently as you’d like a best friend to do for you when you’re upset about something.

I know for damn sure it isn’t easy. But you’re not alone mamas. Whether it is a gtube, CP, trach, mobility issue, speech issue, whatever the struggle is, we all struggle and it’s a process of grieving. So many of us out there struggle with this very thing, though our plates may look different, we still feel the weight.

So, please feel free to comment about your tubie (or special needs) mama journey and your own experience with the ‘shift’. It may just be the one thing another mama needs to hear.

Happy Shifting Mamas!

 

xx, Mary

Feeding Tube, Parenthood, Travel

Tips For Flying With a Tubie

by admin May 14, 2019

 


In March, I flew to Florida with my tubie. It was just me and her. It was her first time flying so I made sure it was a nice short flight in case things went terribly wrong. I would be lying if I didn’t say I was nervous about how things would go. I mean, it can be stressful flying with a typical toddler, mind you a tubie toddler.

When you have a special needs babe, traveling can feel daunting. See my post on 22 Tips to Keep Your Sanity as a Tubie Mom. There are so many more factors to consider and things to remember. What makes it even more overwhelming, is that every “typical” worst case scenario related to flying with a toddler is multiplied because it won’t be typical… it will be tubie-cal (haha 🙂 )

Things went… good. We had some meltdowns. We had some hiccups, but we survived. And, we plan to make another trip in the upcoming months.

So, if you are thinking of traveling with your tubie but are weary of how to even do it. Here are some things I learned that might help you.

Disclosure: This post may contain affiliate links that earn me a small commission, at no additional cost to you. I only recommend products I personally use and love, or think my readers will find useful. View full disclaimer.

Pack extras

This sounds like a no brainer but what I mean is pack extra feeding supplies but don’t overdo it. I packed enough + one more day. If you pack too much, it can get cumbersome toting it all around.

If you’ll be gone for an extended period of time (think one or more weeks), I would consider shipping the bulk of your feeding supplies beforehand and just bringing a couple of days worth with you.

Prepare with a Book

In the month leading up to our trip, I purchased a book about flying. Maisy Goes On A Plane . This story is age appropriate and cute. It shows all the different “steps” to going on a plane and I believe it helped lessen some of the unfamiliarity for L. She’s about 2 by the way.

Get the better seats

So, flying on Allegiant, they charge next to nothing for their flights, but they charge for everything else. Still, if I don’t check any bags in, I can get away with some cheap airfare. One thing I splurged on on the return flight was extra legroom. Since L is under 2, she flew free in my lap. I will NOT be doing this again but if your babe is still quite small and not so squirmy, go for it. If your babe is like mine, get the extra legroom seats. It made our flight more comfortable, and I actually had room to reach down and grab things from our diaper bag underneath the seat in front of us.

Sometimes I even let her stand in front of me to stretch her legs and get her squirmies out.

Get to the airport early

Another seemingly no brainer but here is why. Security will flag your bags and have you step aside to check everything. I mean, everything. They had me remove all of L’s Nourish pouches and medications to be scanned and tested individually!

So, imagine, two pouches per day, five day trip, plus one extra days worth, meant 12 bags that had to be removed and tested. Plus four liquid medications, opened and tested for vapors.

Fortunately, we traveled through a regional airport that is tiny tiny, so lines were very short. Still, this process took at least an extra 15 minutes. I wasn’t counting because lucky for me, L was screaming bloody murder the entire time and could not be consoled.

Even if this process didn’t take that long, the process of taking things out and putting things back in the bag did. Which brings me to my next tip.

Put all medical supplies, food, and medications in clear plastic bags.

I put all of the Nourish pouches together in one clear trash bag, medications in a large ziploc bag, and all feeding supplies in another clear trash bag. I then placed everything in one of our rolling carry ons. Airlines will allow a carry on size luggage for free if its containing medical supplies. Don’t get stuck pulling out multiple things from different bags, you’ll thank me later.

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Diaper bag (left).   Lucy’s medical bag (right).
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L’s medications, Feeding extension, Split Gauze, Noise machine, Portable Cleaning Kit (left). Nourish pouches, Infinity bags, Infinity pump and charger (right).

You want to make sure you carry these items on in case someone loses your checked bag or it gets delayed. By placing them all in bags, you are 1) protecting them from those germy gray bins, and 2) making it easier to remove/put back during security check points.

Bring a letter of medical necessity

I requested a letter stating of L’s diagnoses and need of medications and feeding supplies to be carried onto the plane. We didn’t need it, but I would hate to think what would happen if you did and didn’t have it.

Bring your pump bag

I used our owl backpack both as our on-the-go bag and her overnight feeding station. I did not want to lug around an IV pole, so I just got a command hook and hung the bag near our bed. You could also just use command hooks and/or velcro to adhere the pump wherever you need. Cheap and easy enough.

Pack the best diaper bag possible

Here’s what I mean, airlines allow you to bring a diaper bag at no charge. So besides the usual diapering necessities, you also need to pack tubie accessories. I used a large backpack like this one, so I could put our small lunchbag (medications, ice pack, and blenderized food pouches) at the bottom plus all of our necessities.

I packed

  • 5-6 diapers (you never know if you get delayed or they’ll have a marathon of accidents),
  • a SMALL pack of wipes (meaning, a half used pack because full ones are 1) hard to carry when holding babe in the other arm, and 2) the security is going to check this too and if it’s smaller, it’s easier and faster to do),
  • a change of clothes for both you and babe. In case of a pukery hits or a messy diaper. We don’t normally have pee leakage during the day, but what do ya know. It happened while 30,000 ft in the air. And, lugging the full pack of wipes, diaper, pee pad (my disposable changing pad), trash bag for wet clothes, and babe on my hip was no feat maneuvering the tight rows on the plane.
  • Heck, pack a small diaper changing wristlet or something. It has to have been better than what I did.
  • Emergency g-tube Kit (see the kits I have here)
  • Pencil box with our g-tube supplies (see mine here), it includes 60ml syringes, extension, and medicine syringes, so if I need to feed L, I can easily with this box
  • Tons of snacks (if your child is oral). Keep these in a larger ziplock, because security might want to check this too (oddly they did for us). I also used these Ubbi snack cups that have a lid so things did not spill out when tossed around.
  • Something to drink or suck on (e.g. bottle, Paci), this helps to relieve ear pressure when flying
  • Sanitizer, Lysol wipes
  • Toys: iPad with downloaded videos from YouTube or games, Buckle pillow, Quiet Book, and the Melissa and Doug Water Wow books (these books are like the best investment EVER, tubie or not, all you need is water and they are reusable!)

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This is our mack daddy diaper backpack. I have diapers (I didn’t end up taking this much but this is the only pic I have); small pack of wipes, pencil case of feeding supplies (syringes, extension), diaper bags, cooler bag with L’s food, bottle, and medications that need to be cold.                      (Not pictured = clothes, g-tube kit, lysol wipes, and snacks). I even shoved a bit of L’s clothes in here, plus her toiletry needs.

Baby wear if you can

Of course depending on the age of your tubie, this may or may not be pertinent. But this was a life saver, because I could calm L down by holding her without actually holding her, and my hands could carry, pull, and push everything we needed.

This was a life saver while moving through the airport, especially the security check point. Because you have to place the stroller up on the machine, and trying to unload all your belongings plus holding a toddler would have been an absolute nightmare. I baby wore her until we got on the plane.

Bring a lightweight stroller + Mommy hook

Boy, oh boy, did I research this one to death. I heard of these amazing lightweight compact travel strollers that fit on the plane! But…. after hours and hours of watching videos and reading reviews, I came to find out US based airlines DO NOT let you bring strollers on board regardless of how small it is. The international flights are more family friendly and allow this practice.

I ended up choosing one that was lightweight (11lbs) and was still fairly compact and had alllllll the best things (e.g. extra large canopy, easy but deep recline, adjustable foot rest, stand up fold, and one handed folding / steering). I chose the ZOE XLC in Navy. Not only is it good for travel, but I plan to use this as my daily stroller and keep my umbrella as a backup.

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Having a stroller may sound cumbersome but I was able to toss some of my baggage on it while baby wearing L. I also put her in it to nap while we waited to board and she slept like a log. Plus, I just plain needed it while in Florida so it was a no brainer.

Use a mommy hook on the stroller to hang your pump bag to feed baby on the go.

Accept help

There will be many times when you will need that extra pair of hands, picking up a dropped toy, putting up your carry on, even pushing your stroller in front while boarding. I was pleasantly surprised how many strangers offered to help me lug everything, and it definitely made things easier.

Breathe, breathe, breathe

There will be trying moments and moments that will wreck your nerves, but you will get through it.

The things I kept thinking of during some of these moments were: the fact I will never see these folks again, so I don’t care if my child annoys them with her squealing cry or bump of their chair (I, of course, try to minimize as much as possible); and second, the joy of getting to visit my family in Florida.

Take lots of deep breaths. There will be a lot of learning moments. You learn only by living. So don’t just stop living because it is uncomfortable to learn! I don’t ever want L to feel like her “special need” is a hindrance to doing things, so I refuse to do the same.

Just think, when you are done… you will have single handedly traveled hundreds of miles as a bad ass tubie mom. 🙂

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What are some tips/tricks that you have learned for traveling with a tubie? Leave a comment below and share the wealth 🙂

xx, Mary

 

Feeding Tube, Micropreemie, Parenthood

How I Stayed Afloat As An Unemployed Special Needs Mom

by admin March 23, 2019

When you join the Special Needs Mom group, you are thrown for a loop. Everything changes about your life. Your day-to-day routines. Your relationships. Your work. Your finances. Often times, you have to give up your job to take care of your little one.

This is what happened to me when I gave birth to my micro preemie baby. She was born 3.5 months early and was in the NICU for 5 months.

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During the first month, I was out of work to recover from my c-section…which hurt like heck!

I was fortunate enough to have maternity leave so my job was protected, but it wasn’t paid. I had accumulated sick days to help cover some of our living expenses in the first few weeks. Thankfully I have a wonderful workplace where generous colleagues donated their sick time to help me out too.

When I was able, I returned to work while my babe was in the NICU. But, I was at a lost for when my baby came home. I was out of any paid time off and my position was no longer one I could fulfill. So, I had to make the difficult decision to leave my dream career so I could begin my new job, a stay-at-home-mommy.

After the first couple of months, it became very apparent to my husband and I that there was no way I could have continued to work outside of the home and still provide the care my daughter needed.

Every week was filled with numerous specialist appointments, therapies, and countless hours on the phone with insurance and medical providers. Not to mention the tube feedings and vomit clean up duties around the clock.

I was exhausted and drained every day. Although my husband works very hard and makes good money, we, like most of you, were accustomed to living off two incomes and it was a stressful time to figure out how to continue to pay for everything.

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Above the obvious suggestions of budgeting, cutting out some luxuries, consolidating, purging and selling stuff around the house, and being frugal; it wasn’t easy, but I have actually been able to thrive in my new SAHM role and here’s how:

Disclaimer: Some of the things I mention are SC state run programs, which may or may not be available to you. I still share in that maybe you can research and find something similar where you live.

  1. MEDICAID

    This wonderful yet very complicated resource provides low income families the ability to receive medical services. It is basically like health insurance that is free to qualified individuals. When my daughter was in the NICU, she automatically qualified for Medicaid due to her prematurity. But once she was discharged, that all changed because now it would be based off income. My husband made too much but we desperately needed health benefits for all of my daughter’s medical needs for appointments and supplies.

  2. TEFRA aka KATIE BECKETT

    This is medicaid for children with disabilities. This program only looks at the child, their disabilities and THEIR income, which should be zero. This program has been an absolute life saver so we could continue going to our appointments and getting feeding supplies at little to no charge.

  3. GAS MILEAGE REIMBURSEMENT

    I learned of this from our case manager. The program is through Logisticare, a transportation service for medical appointments. This program offers two things: actual transportation for Medicaid recipients to and from medical appointments, or gas mileage reimbursement if they are being driven by someone. The reimbursement rate is $0.32/mile. It isn’t a ton, but it adds up when you’re driving to specialist appointments and therapies every week and you’re getting money to do what you would normally do anyway. I generally receive anywhere from $100 to $200 a month depending on our schedule.

  4. MEDICALLY COMPLEX CHILDREN WAIVER 

    I learned about this through our caseworker. This waiver allows us to receive in-home nursing care for my daughter at no charge. My daughter qualified for this program due to her prematurity and her g-tube. The interview was fairly straightforward. They asked about her medical conditions and what it all takes to care for her throughout the day (e.g. medications, tube feedings, etc.). This has been such a blessing! I was very apprehensive at first, but I don’t know what I would do without our nurses. They have become like family, and they allow me some reprieve, as well as the ability to do part-time work and side hustles for extra money.

  5. BABYNET

    This program is typically available in all states, but it is called something different. For instance, in Florida, it is called Early Steps. It is a program geared to providing therapeutic interventions for children under the age of 3 with anything necessary for growth and development. Our Early Interventionist comes once a week to provide therapy to help L meet developmental milestones, such as grasping, climbing, walking, talking, etc.

  6. HEALTH INSURANCE PREMIUM PAYMENT (HIPP) PROGRAM

    This program is through Medicaid and is a life saver too. Currently, we have private health insurance through my husband’s employer, but since it is a smaller company, our monthly premium is insane (like a mortgage insane)! We have Medicaid as our secondary insurance, and so Medicaid has this program that will pay for the child’s insurance premiums. The notion is that this would be cheaper than being our primary insurance and paying for all of the child’s claims in fully.

These resources are beneficial in two ways: by giving us the medical support for services and supplies; and giving me the time and energy to seek out part-time employment.

I never thought I would ever need to take advantage of resources like these, but here we are. Knee deep in specialist appointments, therapy sessions, and down one full-time income. I am SO thankful that there are programs like these because honestly things would be much more stressful. Now, I am a work-at-home-mommy, and I love it.

If you are in SC, feel free to reach out and leave a comment with questions or resources. If you are in another state and have suggestions on resources, share the love below so other mamas can benefit!

xx, Mary

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Feeding Tube, Parenthood

Everything You Need as a Tubie Parent: Emergency G-Tube Kits

by admin March 11, 2019

Having a child with a G-Tube is not your typical motherly experience. Your lifestyle is… different. Not bad, just different. Whether your child has a g-tube because of genetics, prematurity, or an illness, it is an unexpected curve ball. I know you can’t plan for everything, but having a g-tube emergency kit is an absolute must. It will ease your mind, trust me. You have enough on your plate as it is.

Here are the g-tube emergency kits I have created. The first is one to toss in your diaper bag. The second is one to keep in your cars for the big emergencies, like a long trip and potential strandedness.

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Some might think having two different ones may be much, but in my opinion, you can never be too prepared when you have a special needs child.

Mini G-Tube Emergency Kit

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Johnson & Johnson Mini First Aid kit – you can find these for $0.99 at Walmart or Target

This little box is perfect to stash in your purse or diaper bag. It is big enough to house the essentials in case you need to replace your babe’s button, but small enough to not take up so much space in your bag.

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Filled with all the essentials should I need to replace her G-tube

The essential things you need to have with you in case of an g-tube emergency:

  1. Alcohol wipe You never know when you’ll need it, especially if you have dropped any items
  2. G-tube button Ours is a AMT Mini One
  3. Lubricant I got this from our g-tube kit, but you can easily use chapstick, or so I am told
  4. Blue Tee Not exactly sure what this is technically called but it looks like the tees you use in golfing. You use this to insert into the button to keep the shape’s integrity as you insert
  5. Syringe I include a 5ml syringe so you can inflate the balloon with water
  6. Extension Important if you forget yours, lose it, drop it in nasty stuff, and need to give baby some meds, food, water, etc.
  7. Gauze Something clean for absorbing or wiping away the area
  8. Bandaid This is important in case your balloon has malfunctioned and you need to tape down a button into the stoma so it does not close up. The stoma can close rather quickly if nothing is inserted, so it is important to keep the stoma open to avoid another surgery

Big G-Tube Emergency Kit

The next G-tube emergency kit is for the bigger emergencies, like being stranded on a trip without supplies of any sort, or you need to something to hold you over for 24 hours.

This is a Red Cross First Aid case I got from Target one year. It was free as long as I purchased three first-aid items (e.g. bandaids, Neosporin, etc.).

I just love the cute colors and design!

 

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Here is my big emergency kit opened

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All of the items in my big emergency g-tube kit:

  • Nourish ready-feed meal replacement L uses this as a part of her daily diet. We feed this plus a homemade blenderized diet
  • 60ml and 35ml syringes I bolus feed L’s feed now via syringe, other syringe is for water flushes
  • Infinity feed bag I have this in here just in case I need to use our pump (not pictured, and assuming I have it but if I don’t, I have my large syringes) to feed over long periods of time
  • AMT Mini One Extension
  • AMT Mini One G-tube
  • 5ml syringe to inflate g-tube balloon and/or administer medications
  • Lubricant for inserting button
  • Antiseptic wipes
  • Split Gauze To dress her stoma
  • Waterproof Bandaid In case we plan on getting wet
  • Tape If the balloon will not inflate and I need to tape the button into the stoma so it won’t close

 

There you have it folks. Both of my G-tube emergency kits, big and small… both of my sanity savers. I remember in my early tubie days, I used to feel so anxious about things going wrong and not having the tools on hand when out and about. After being a tubie mom for 15+ months, I have had to use these a handful of times. Thankfully, I never needed to scramble or freak out too much because everything was right there.

Now, I never leave home without either of them, and I no longer feel anxious about potential tubie emergencies.

I hope this was helpful to some, and that maybe you will feel a bit less stressed as a tubie parent. 🙂

 

xx, Mary

What’s in your g-tube emergency kit? Leave a comment below 🙂

Feeding Tube, Parenthood

22 Tips to Keep Your Sanity as a Tubie Mom

by admin February 9, 2019

Being a mom to a tubie is not easy. It is actually pretty confusing, especially in the beginning, and very frightening. I have been on this tubie journey for 15 months now and want to share some of my tubie mom wisdom, so maybe it can make your life a little less stressful, because let’s face it–life is anything but easy right now!

Disclosure: This post may contain affiliate links that earn me a small commission, at no additional cost to you. I only recommend products I personally use and love, or think my readers will find useful. View full disclaimer.

Please keep in mind that this list is for informational purposes and it is not to be taken as medical advice. This is what worked for MY child but yours may have different needs. You need to discuss this with your child’s medical provider before trying any of these or do so at your own risk.

  1. Use a pencil box like this one here to house syringes, meds, and extension while out and about.
  2. Accept the fact that you WILL feed the bed. If you have already, Congrats! You have joined the club. I have a waterproof cover on her mattress (like this one), PLUS two dog pee pads under her fitted sheet. This way, it isn’t that big of a mess to clean up when it happens.
  3. Vomiting will happen. Unfortunately. Keep puke buckets around the house. I literally used whatever I could find that was easy to wash out (e.g. plastic tray, toy bucket, even a small baking pan…don’t ask). Also helpful to line everything with a dog pee pad. We ordered ours by a 100ct box off Amazon.
  4. Make a G-tube emergency kit. In fact, make three! One for each car, and one for the house. Here is a look at one of my mini kits. I also have bigger ones (check out my post on g-tube emergency kits) that have a feeding bag and back up formula in case of a bigger emergency.
  5. Hoard as much supplies as you can. It is stressful to think you will run out of “life-saving” supplies. Ask your durable medical equipment (DME) company for as much as you can (e.g. back up buttons, feeding bags, extensions, syringes, gauze pads, tape, formula, etc.), and just donate to another tubie mom later if you don’t need them.
  6. Join the Facebook Group for feeding tubes: G-Tube Babies (G/J), (J), (N/G), and (N/J). These mommas are such a wonderful resource for support, tips, and place for supplies.
  7. Always double check the bag is closed tight (the lid can be difficult to close tight the first time around).
  8. If you are using a Kangaroo or Infinity pump, make sure to get all the air out of the bag so in case your bag tips, it won’t pump air in the line. And, learn the trick to priming the line without holding the Prime button down.
  9. Have your DME’s number saved on your phone. There will be emergencies and you will need to contact them quickly. Don’t search paperwork for that.
  10. Change the settings on your pump so it DOES NOT beep when done. Get sleep! Find the PDF for the Infinity Teal pump here. Scroll down to page 19.
  11. When we give continuous feeds overnight, we use a lunch bag with icepacks so I did not have to get up and refill. Ours looks like this.

    I will add that the rate we set the pump overnight is very slow that when the formula/food reaches to her tummy, it is room temp and not cold anymore. (note: use caution and consult with your medical providers to see if your formula/food is cleared to do this!).

  12. Make a chart / schedule for all the feeds and medications. It will ease your tired mind and allow others to follow directions so you can get a break.
  13. Watch and learn how to reinsert a g-tube. It will happen. I panicked and screamed the first time it happened but I took a deep breath and put on my big girl panties. You can do it too!
  14. Not all babies are the same. If your baby continues to vomit or have problems with feeds, and your GI doctor/nutritionist don’t seem to really help, get a second, third, fourth opinion!! Unfortunately providers don’t have all the answers and us mommas need to advocate for our babies.
  15. Get a feeding pump backpack from your DME or make one! I have both and LOVE my waterproof owl one. I ordered it here. We use it even though we don’t use the pump during the day anymore. I put her food, button supplies, emergency kit, diaper, wipes, etc. in it. It makes traveling so much easier and cute!
  16. GET THE MIRACLE O-RING SYRINGES. PERIOD. You will not regret this. The disposable ones from the DME have caused me to send food flying to my ceiling and the roof of my car, twice. They cost about $3 something for a 60ml syringe from this website. The numbers don’t rub off and they last months! No joke! Worth. Every. Penny.
  17. When I have needed to vent my girl’s tummy, I found connecting the extension to a large 60ml syringe without the plunger worked best. I just have her lay on her back, hold it above her tummy to allow air to travel upwards. It is burptastic!
  18. In case of an emergency, I have GENTLY pulled back with an empty syringe to check for stomach contents when I had to replace a button instead of going into a hospital and expose her to nasty germs (note: If you decide to do this, use so much caution and be very gentle as to not pull when there is resistance).
  19. Use a mommy hook to hang the feeding pump bag from your stroller, like this one.
  20. In this journey you will become many things, and wear many hats, a nutritionist, a gastroenterologist, a feeding therapist, even a scientist. You will learn to try different things and record results each step of the way in hopes for positive change. Keep a journal! See how I used my bujo for this.
  21. I don’t know your story exactly or where you live, but if your child has a feeding tube, there is a chance that they will qualify for Medicaid based solely on medical need, even if you are over the income requirement. Look into medical waivers in your state as well (if offered in your state), you will probably qualify for in home nursing care. We live in SC and thankfully have these resources available. Initially I said no to nursing, but I am glad I took a chance. It has been a major blessing! I can now work part-time, run errands, do housework, and even have some me-time because of this wonderful resource.
  22. Last and most important, don’t forget to breathe. Tubie life is not for the faint at heart but you got this! We never thought feeding issues were going to be in our future as a mom, but these kiddos are strong and so so special. I swear my girl has taught me so much being her mom, things I don’t think non-tubie moms could ever know.

Take a bow momma–you are amongst the badass tubie mom crew. Wear your crown high, and if you falter… have no fear, we have to stand together. No? Too much? Yeah, Okay, I know. I am just so tired that I get all giddy 😉

Again, please keep in mind that this list is for informational purposes and is not to be taken as medical advice. This is what worked for MY child but yours may have different needs. You need to discuss this with your child’s medical provider before trying any of these or do so at your own risk..

What are some things you have learned along your tubie journey? I would love to hear from you!

Last updated: February 9, 2019. 

Feeding Tube, Parenthood

Sincerely, A Tubie-Mom

by admin February 6, 2019

 

My daughter was born at 26 weeks gestation and was in the NICU for 148 days. She left the NICU with oxygen support and a feeding tube. Feeding was her biggest hurdle and it came to a point where that was her last “check box” before being discharged from the NICU, so we decided to get the gastrostomy tube (G-tube) and bring her home. That was 15 months ago.

Our Tubie journey has been one heck of a ride and I would be lying if I said I was happy about it the whole entire time. Here is a list of things I wish I didn’t have to say:

  1. Some children have difficulty with walking. Some children have difficulty with talking. Some children have difficulty with eating–that is my child.
  2. It is probably one of the most unnatural ways to eat, but this is the only way my daughter could eat. This was a very difficult notion to grasp…I fought real hard against this. The thought of “my child could not survive without this” killed me.
  3. People will stare. Some make remarks. Others ignore. None feel good.
  4. I count calories, I calculate macros, I measure water intake, I measure EVERYTHING…because I am trained to. The doctors in the NICU and countless GI experts and nutritionists drill into my exhausted mom-brain to properly nourish my child. To do otherwise is insinuated as neglectful. Sadly, eating has become a medical procedure.
  5. I am exhausted. I have tried literally everything under the sun to get my child to eat…
  6. My brain is fried. I have researched hours upon hours on why she won’t eat, and I have spent countless hours exhausting all measures with appointments and tests.
  7. I don’t know when the tube will come out. Nor do our doctors and therapists. It used to eat me up inside wondering why can’t my child just do the most simple thing as eat?!
  8. I have to schedule my days around her feeding schedule, which many would consider fairly typical of any oral eating child. But what you don’t know is that I am also scheduling around all of the little nuances too (e.g. splitting up a 3oz meal into two with a 30 minute break, not giving too much water too fast and waiting 15 minutes before starting the feed, allowing an hour of rest after, etc.). Not to mention needing to keep her fairly confined so I can connect her to the extension and feed her.
  9. I have dealt with a pukery of a life for months. And no, IT ISN’T SPIT UP. She vomits.
  10. I can’t just have anyone watch her. Using a g-tube requires training and A LOT of trust. Things can go awry quick.
  11. Leaving home without a g-tube backup is not an option.
  12. At any point in time, my bag may look like I am a druggie with all the syringes and medications.
  13. I have probably (I say probably because I don’t know your story) done more laundry than the average new mom. Courtesy of the vomit and bed feeding incidents.
  14. I grieve over the idea of simply orally feeding my child. I may have even unknowingly stared at another mom feeding their child and cried inside.
  15. I can convert metrics to ounces VERY WELL.

BUT I ALSO….

  1. Love my child to pieces and am blessed to have her.
  2. Know the tube doesn’t define my daughter, she is MORE than just how she eats. I don’t want her to define herself by this so I won’t, and you shouldn’t either.
  3. Have accepted this is our norm and she is who she is…A wonderfully stubborn and bright little girl.
  4. Am grateful for medical advances to allow us to keep her alive, but I also feel deep down she would somehow kick life’s butt regardless.
  5. Would prefer if people would just ask me about her feeding tube rather than stare, blatantly ignore, or make ignorant remarks.
  6. Have stopped measuring every little thing. Trying to de-medicalize feeding IS NOT easy but yet so liberating at the same time. I still make sure she is properly nourished but I am thankful she is healthy enough for me to “treat” her as a typical oral eating toddler, sort of. She eats an awesome diet of nutritious foods now, just blended and tubed.
  7. Have stopped searching incessantly for medical reasons because, well, I have already done it all. But also because it wasn’t healthy to put myself under such stress.
  8. Continue to go to doctor and feeding therapy appointments frequently and even travel 3 hours for specialists, because it’s still important to me to provide the best care possible.
  9. No longer cry and scream every time she vomits, partly because it has slowed down a lot, but mostly because I am overcome by compassion when it happens.
  10. Still have trained professionals watch after my daughter because this too is important to me. It is also very expensive.
  11. Am a pro at inserting a g-tube if needed but still prefer to not have to!
  12. Have made a super cute feeding backpack for my daughter that houses all of her stuff. Because we cute like that.
  13. Enjoy laundry now because I have got the KonMari Method bug, and I LIKE IT.
  14. I have also reached the stage of acceptance with my grief. It was NOT an easy journey and I’d be lying if there weren’t fleeting moments of fear and sadness when I think about her tubie future. But I no longer am filled with angst and jealousy. Just pure love and compassion. She did that to me.

P. S. If I am snappy about you asking “when the tube will come out?”, it isn’t because I am mad at you. It isn’t because I am offended. It is because I am tired. Tired because I ask myself that question countless times a day. Because our doctors and therapists don’t even know. Even though I have accepted it, I still like to have some normalcy in conversations. So feel free to ask me about her, what she’s doing, how she’s doing, and let me bring that up. It just isn’t the one thing I want to talk about with everyone all day, that’s all. I still love ya though.

😉

Here is a pic of my Happy Tubie. Don’t mind the hair, she just woke up from a nap while mommy was folding laundry.

This is the smile she gives when I ask her where her button is.