Feeding Tube Awareness, in our world.

  

Today concludes Feeding Tube Awareness Week. 

A year ago this week, I remember watching so many videos of these heroic children and fighters that were living with a feeding tube. I remember watching these videos and scrolling pictures that we're being uploaded with tears STREAMING down my face at the sadness of it all. The song that played along was intended for happiness from it's creator but that was the last thing I could hear, I could only feel my breaking heart for why these innocent children were living such a sad, sad life. I stayed involved with these families and have continued to follow their stories, because unlike my own daughter, they were also sick. Annabelle was on the beginning of her toughest journey. March began our year from hell but exactly a year ago, Annabelle was deteriorating quickly. I found myself becoming involved with groups of children with severe allergies, feeding issues etc. This was beginning to be our life, the doctors appointments were quickly beginning to fill our calendars and I could have never, ever known what a year from then could look like. One thing I DID know however, was that my child will never be put on a feeding tube. She will never become so ill that I cannot save and nourish her on my own. Because after all, Annabelle will eat food on her own! If she can eat food, we have absolutely no use for a feeding tube. Ever. End of story. 

 

All that to say, my uneducated knowledge of feeding tubes has unwelcomly been changed dramatically during the last 52 weeks. In many many ways I used to associate a tube as a placed, set device that simply delivered food. Delivered food to only those gravely ill and unable to eat.

• I never realized or respected the intense amount of care and maintenance feeding tubes involved. 
• I thoroughly underestimated the hell the Tubie goes through, routinely, to use these devices. 
• I didn't even consider that a parent of a tube fed child can never go out again or leave their Tubey with someone that isn't educated and trained on tubes. 
• I never imagined the weight or burden on the family, that feeding tubes impose. 
• I didn't consider all the ways the life of a Tubie could be changed and impacted.
• I could have never fathomed the sheer amount of medical supply needed to tube feed.
• The costs associated never crossed my mind, I ignorantly assumed insurance covers it. We have insurance, they have insurance, I'm sure it isn't a burden!
• Most importantly, feeding tubes are used for an incredibly long array of reasons.
• Feeding tubes are life saving devices. Annabelle's feeding tube has literally saved her life, whether I love or hate the thing or not. 

The first hurdle of transitioning life with a Tubie was the upfront emotional support and lack of understanding from our family and friends. Annabelle started off with an NG Tube instead of a Gtube. We couldn't hide the tape and tube across her sweet little face. This was a monumental change in our family.. For so long we knew Annabelle was sick but with this change, it was suddenly very present and in our faces everywhere. It took weeks, months maybe before I could see past the ugly tube. It didn't take Big Sister Madelynne as long, fortunately. When Annabelle would laugh or do something silly, Mady loved it and asked if I saw that too - with a blank stare, I found myself so blind sided by the hideous tubing and taping, that I would forget to watch my little girl living!! I hated the feeding tube. I hated everything about it. But I loved that my daughter was finally thriving...

Stores and the public are difficult. To be honest, adults are much worse and more critical than children. Children are innocent and curious - adults are narrow minded and judgmental. I can't tell you how many times, with both an NG Tube and Gtube, we've been told by complete strangers;

"Do you have to do that right here.. People can see you!" 

"Shouldn't she be in a hospital and not out shopping?!" Excuse me for needing to make a target run for more Tylenol, wine and diapers. 

"You know, I'm old school and they pushed me to use formula in the hospital too - but there are a lot more breastfeeding resources now.. My daughter and my daughter-in-law breastfeed, it just takes a lot of work and not giving up." Thank you, as I fill a feeding bag and rehook tubing. I believe our situation is a long stretch from breast feeding laziness. But thank you though! For reminding me of a very personal and sensitive fear that I have about not being a good enough mom in the beginning with Annabelle, that maybe had I tried and nursed longer, then maybe we wouldn't be here.. Thank you complete stranger.

Mady educates kids very quickly if they stare too long at Annabelle's Tubie. She will pipe up and announce: "That's my sister. She has boo-boos in her tummy so her Tubey is like a straw and it feeds her. You don't have to stare, you know."

As much as I can, when asked and approached nicely, I am always positive about our Annabelle and always keep it tiny, short and simple for adults and kids that are intrigued. I admit I was a person that would stare before, purely because I was curious about their situation and what constituted their need for tube feeding - because often, tube fed kiddos don't look sick! Never though, did I relate that tiny tube to the monumental life change it puts on a persons family. Had I known any of what I know now, those stares would have been a lot less "intrigued for my own curiousity" and a lot more looks of compassion and support from one mom to another. That's what feeding tube awareness week is for. Simply for the education and awareness for feeding tubes purpose and what lives are like for those that use them. To help educate and provide a little understanding to the incredible supporting friends and family like you! To people like me a year ago, that are compassionate to help, but curious and oblivious to Feeding Tube reality.

Meet one of our best friends, Ryan. His mom and I became instant long lost sisters from the first time we met; outside of a doctors office, in cold February while we both looked exhausted, run down, desperate and in yoga pants. Sweet Ryan had just become a Tubey of a G-tube, and belle was a few weeks away from receiving the same diagnosis Ryan had just been given. My heart poured when I first met Ryan, I looked at this sick little boy in a car seat and his sweet face haunted me for days, I couldn't sleep. 'That baby was so sick.. Belle cannot possibly have what he does.. That moms life just became hell. And the equipment, oh god all that equipment!' A few weeks later I was trying to comprehend our first diagnosis of Eosinophilic Esophaghitis, just like Ryan, my life was upside and so I called the only person who could calm me in this situation; Ryan's mommy. She promised life would freaking suck but it will be ok. Soon after, we truly began to get to know their family. Ryan is sick, he's tube fed and he's been thru his own share of hell - but a year later, I'm not haunted by that little boy and his intimidating equipment, I am empowered by another family who truly understands our hell. Ryan's mommy coached me all the while we began our tube feeding days and held our hand because she knew I didn't want it more than anything. She promised me it would suck, but will save her life. Ryan visited belle in the hospital for Tubey Buddy support after she had her gtube surgery. Ryan's older brother plays with Mady and they both laugh and joke as if their lives are not upside down in their families. We find normalcy in our insanely abnormal families. Ryan is Annabelle's little hero, Kelly is mine in this crazy EoE / Feeding Tube world.

Video 

The supplies is overwhelming. The storage is a joke and always changing and evolving. The costs are monumental. 

 

Here is one week, seven days worth of supply:

4 cans of BCAD1, $149/can. $600 a week

1 can of Anamix Jr, $129/can

35 (minimum) 60cc syringes to vent (release gas off her tummy), $47

At least 60, 5ml syringes. Used for medication administration, flushes before and after venting, feeds, meds etc. $36

7 feeding bags, $22

7 Ferrell bags, $18

2 right angle feeding extensions, $44

2 bolus feeding extensions, $36

Sterile water for flushes while were out and not at home.

35pkg (minimum!!!!) 2x2 split gauze for drainage around gtube / cream application etc., $16

Tape, tape, tape of every variety for numerous uses: keeping button in place, taping extension secure, securing extension to clothing, taping gauze together so it doesn't fall off, taping gauze to skin so it doesn't move and irritate. Etc

Mepilex used for heavy drainage when site is bleeding, $19

DuoDerm: skin protectant from the tape, $15

Steroid cream for granulation tissue, $45/tube

Neosporin, $8

AMT clamp, $16

Million, Cotton Tip Applicators for cleaning, medicine - everything! $5

This list doesn't include the following expenses:

1 Gastrostomy Tube that must be changed every 60-90 days, $239

2 IV poles, $129, each

Kangaroo Joey Feeding Pump, $1,600

Red Bull for mommy and daddy, 2/$5

Blending bottles to mix formulas, $6-10 each

Numerous sheet protectors for leaks, $25 each

Various backpacks and bags for on the go, $79-$180 each

Tubey pads to make it more fun, $5 each

Billion stained clothing from either one or combination of: greasy meds, stomach bile, medication, formula, blood, granulation drainage etc

Various medications, co-pay $10-$50, without co-pay $20-$600 each

Linkadoos in every car and all over the house to make feeding easy everywhere, $8 

The rare occurrence we try to leave the house and must have a qualified nurse care for Annabelle. We currently employ a nurse who works for us 40hr x week. If we would like time away, we have to pay additionally out of pocket for her to watch Belle on her own time. Obviously, this can only happen when absolutely necessary.. 

The rough costs for tube feeding Annabelle right now is nearly $1,000 a week. 

With the costs added for using a medical supplier to facilitate all our supply shipping, that's over $4,000 each month.

This is tube feeding supplies only. 

Some people are very fortunate to have all their costs fully covered - but the majority of us are not as lucky. The majority will have some costs covered and many will have no help paying these bills at all. This is a monthly number! This is the cost it takes to keep your child alive, children and people that use feeding tubes, do so because their lives literally depend on it. These numbers and pictures are their reality. This is our families reality to saving Annabelle from a nutritional standpoint alone.

This is Feeding Tube Awareness.

What I would love for everyone to know about my Tubie is this:

• Even though she has some fat and love around her thighs, doesn't mean her feeding tube isn't essential. 

• Most tubies do NOT look sick! While this is hard for you to understand, as the parent of a Tubie, this is our proudest moment. Look at our children and how well they look - dig slightly deeper and recognize the HELL we survived to bring our children to this point of looking well.

• No parent and no child wants this or would ever ask for this life. We smile and appear strong, but only because it is our life and we don't have a choice. Every day, every hour, every minute.

• Treat our babies like one of yours, in most aspects. When our tubie melts down in a restaurant or at the dinner table, understand eating and these normal family routines have been a picture of heart-wrenching change in our lives. Some of these kids like Annabelle, used to eat but now cannot. Some have never put food in their mouths in their life and can't, but want to. Some children are just learning to eat, and it may only be one food. Nonetheless sitting at a table for an hour while everyone else eats is an adjustment regardless the 

We too used to have a routine around the dinner table until it simply became unfair and uncomfortable for all of us. For over 6mon Annabelle didn't eat food and we never sat around a table any longer. Now, she is allowed a small amount of food but is intrigued and wants so badly to eat what everyone else is having. She has little patience to sit back and watch as it takes us 4x longer to eat than it did for her to enjoy her 1/2 bowl of green beans only. Meal time is a continuous adjustment.

• When we have friends or family over, or vice-versa, we love and appreciate you including Annabelle, but please, don't take on the stress of specialized meals on her account. Her life is part of everyone's and sadly, we cannot accommodate all the differences only for Annabelle- it's been a compromise on all accounts. When you're planning your meals, let us take on belle's menu. We always travel with all her needs. Have us over and let us all pretend to be as normal as we can :) we like the escape every once in a while.

• A Tubie mom isn't crazy or neurotic. She's protective and aware of her child's every move. She is aware, sometimes too aware of the hidden dangers everywhere. When she appears the most frustrated and overbearing about her baby is usually when she knows something isn't right and is 10 steps ahead of where life is about to take her. Tubey parents can read their children like a mechanic can listen to a car and diagnose it. Just like any parent knows their child, we also know when things aren't right and we que into them. Something being off could mean a laundry list of things and we are constantly, I mean CONSTANTLY, gauging and measuring them! So when we're looking our worst and appear to be unraveling, that's the moment we need the support and non-judgements the most.

• Do not. I repeat, do not lecture me or a fellow Tubie parent on what you did for your picky child. It's belittling and hurtful and I'm certain you didn't even know it. I promise, we have read every single article, story, blog and support group post on how to help our child and are doing so more often than you check Facebook. We take our children to doctors and specialists, and therapist for help. We've tried everything we can and beat ourselves up daily that we may not be doing enough. While your advice is coming from an honest, sincere place, please keep it to your friends that have children more similar to yours. A Tube Fed child is it's own species, and every single Tubie has their own story. I have yet to meet two that are alike... but i'm just getting started(!)

• Our babies are our babies, not medical experiments. They are siblings to another, they are unique and hilarious, strong and sweet. They hear what you say when they're around and they understand more than you can imagine. They do not like being recognized based on their Tubey, call her Annabelle and ask her about Mickey Mouse. Please.

• We have other children too. Her name is Madelynne and she is equally awesome. She is also strong as hell, smart, funny and sweeter than ever. She has so much more to say than to answer the repetitive question,"do you help take care of your sissy? She's sick huh?" Mady loves to color and spell and more than anything, she loves individual attention. She's seen more than most toddlers should see. She's experiences hospitals on the other side from her sister. She's watched her sister subjected to pain and receive feedings. She sleeps in the same room with the loud feeding pump that beeps constantly. She has nightmares (dreams?) when Jesus wraps her in his arms and tells her that he is taking care of her sissy so she doesn't have to be afraid for her anymore. She is shy of 5yo and asks if Annabelle is going to live forever and I can't answer her questions. Mady is almost 5 and is an amazing little girl. Her sister is a Tubie and she's passionate about helping her sissy and defending her at the playground when everyone stares. Invite mady over sometime so she can remember to be a kid without being a sissy to a Tubie. Feed her French fries when Annabelle isn't around!! ;)

• Ak and I are the same people we've always been. We like funny movies, a huge array of music, we love time spent with friends and low key life. We're also tired, just like you too. We try to make ourselves feel just like any of you and remind ourselves that we're no different even when our lives feel like they're from a completely different world. We like normalcy though, and love to be reminded what life used to be like. We still have a beer when the night is right and wish we could share it with others more often than what life allows. Our life is restricted though, dinner out with friends isn't easy, a trip to a germy museum is dangerous and an adults only evening on the town just can't always work out. We're hard to be friends with, but I promise we're worth it! One day, I just know it, one day life will begin to slow down and everything will fall back into place. Please remember that were a family built on only the best of intentions, but struggle to keep everyone happy. We're the same ol' Ashley & AK though. We love and miss all of you that we haven't been able to keep as near as we used to.

The parenting of a tube fed child, the parenting of a non tube fed child, the spouse of an overly tired fellow teammate, it isn't easy. But this is our life. A year ago, I could have sworn my life wouldn't be where it is today. I never imagined life could be so exhausting and expensive to keep a loving and deserving child alive, but that's our reality. Feeding Tube Awareness is about shedding light to all those that are on this journey with us and supporting us, but sharing knowledge into our lives, one winding path at a time. Annabelle is our rockstar Tubie and she's strong as hell. All Tubies are superhero's, without a doubt. The next time you recognize a kiddo or person walking wearing a backpack with a tube line trailing around towards their tummy, or you see a parent shuffling medical supply to feed her baby - instead of stares of judgement, offer a simple smile and head nod of acknowledgement. Acknowledgement and small bit of understanding into her life thru what Annabelle may have just been able to share into yours. Recognize that parent likely hasn't slept full nights of sleep in years, she's likely being robbed daily by healthcare and desperate to just feel 'normal' in a very public place. That person that looks frazzled, never asked for that life but she's stronger than ever! I promise you that much.

http://www.feedingtubeawareness.com