February 4-8, 2019 celebrates the 9th annual Feeding Tube Awareness Week. Learn more and get ‘in the know’ at www.feedingtubeawarenessweek.org
In 2011, Feeding Tube Awareness launched the first annual Feeding Tube Awareness Week®. The mission of Awareness Week is to promote the positive benefits of feeding tubes as life saving medical intervention. The week also serves to educate the broader public about the medical reasons that children and adults are tube fed, the challenges that families face, and day-to-day life with tube feeding. The beginning of February was selected because of its proximity to Valentine’s Day since we “love our tubes” and those they support. Feeding Tube Awareness Week is an opportunity to embrace the positives and be thankful that there are mechanisms to help those who depend on medical advancements to live, grow, and thrive.
*I have a soft spot in my heart for ‘tubies’ and I hope you will join me in supporting awareness of this ‘special’ way of life.*
The disorder of Kieran’s central nervous system has left him with, among other things, severe dysphagia, dysmotility, and swallow dysfunction. Despite a Laryngoplasty and Supraglottoplasty for Laryngomalacia (surgical procedure to alter malformed structures of the upper larynx), Kieran’s condition has, unfortunately, left him unable to feed orally since May 2017.
Following intensive rehab efforts that were unsuccessful, Kieran gained nutrition via Nasogastric tube (NG-tube) from May 2017 until August 2017 when he had a Gastrostomy tube (G-tube) placed. (A G-tube is inserted through the abdomen to deliver nutrition directly to the stomach.) After six challenging months, we finally accepted that a G-tube was not able to meet Kieran’s needs and we made the [at the time, difficult] decision to convert his G-tube to a Gastrojejunostomy (GJ) tube. (A GJ-tube passes through the abdominal surface, into the stomach and down into the second part of the small intestine (the jejunum).)
Kieran has been fully J-tube dependant for over a year, but he is thriving. Let me say that again, a little louder for those in the back. **Kieran may be J-tube dependant, but HE IS NONETHELESS THRIVING.
“Tubie life” is surreal. Before Kieran, I never had any exposure to [nor did I really care to understand] the nuances of tube feeding. I ignorantly just assumed it was a thing for older people or sick/injured folks in the hospital. Uhhh, WRONG.
Tube feeding saves lives.
When we embarked upon the process of tubes being inserted into Kieran’s nose, stomach, and intestines in order to keep him nourished, I naturally wondered: “What does it mean?” “What does it do?” “Why is this necessary?” “Will we ever get past this?”
I am still trying to figure out the answers to some of those questions. But here we are, and we have learned to embrace that enteral feeding is a very real part of our lives; hence, we welcome what it offers for Kieran’s wellbeing.
Wanna know more? If you are a visual learner, like me, this graphic may help:
Noli, a 40+ week healthy baby, was incompatible with breastfeeding (maybe because I sucked at it (no pun intended), or maybe because it wasn’t her “thing”… idk). But, after a long hard attempt at exclusive pumping, we transitioned her to formula and darned if she didn’t do just flipping fine.
When Kieran was brewing in the belly, my OCD set in and I became DETERMINED to make him a breastfed babe (little did I know that nothing he or I could do would make this a “successful” effort). We had a very short period of time enjoying the motherly bonding I’d dreamed of (thanks to the absolute best lactation consultant in history); but, sadly, Kieran’s medical limitations turned to regression of neurological development when he was three months old at which point we found ourselves fighting seven weeks in the hospital focusing on a more important battle. I pumped as much as I could to support the intake of his feeding tube meanwhile — inevitably, though, the time came for us to prioritize. I felt lost and as if I had failed my child.
If I could go back in time, I would slap myself right then and there. WE DID NOT FAIL. We did everything that was RIGHT, for OUR CHILD, in OUR SITUATION.
We were able to donate several hundred of ounces of pumped breastmilk to worthy networks (*anyone looking to donate… please check out ‘Eats on Feets’ or ‘Human Milk 4 Human Babies’ via Maryland Chapters). Even though my milk couldn’t help Kieran at the time, we were able to help several other babies and that was the start of Kieran’s legacy. DO GOOD.
At the end of the day, FED IS BEST. (Read that again, slowly… “FED IS BEST”) If you are doing whatever the hell it takes to provide nutrition for your child, then you are DOING YOUR JOB AS A PARENT.
Never in my wildest dreams could I have imagined I would be feeding my child through a tube put into his intestines… each time I fill his bag and place the feeding pump into his backpack before connecting it to his j-port, I pause. Is this normal? No. Does this make me slightly sad? Of course. But, am I doing my job as a mom, making sure my child is getting whatever his unique needs establish is necessary for survival and growth? ABSOLUTELY. I am really proud to hook up Kieran’s tube (albeit 18 hours per day) and be able to watch him flourish.
However you feed your baby, never forget that “FED” IS BEST. Boob. Bottle. Tube. Food Stamps. Putting eats into your ‘beak’ like a bird, only to chew it up and then spit it back out for the little. Whatever. Please know this: THERE IS NO “RIGHT” WAY TO FEED BECAUSE EVERY SITUATION IS DIFFERENT. CONCENTRATE ON WHATEVER WAY IS BEST FOR YOUR CHILD.
*I have no affiliation with these sources, but along our journey we have found child appropriate literature that has helped with educating on tubie life. My recommendations are below (hoping to one day to add my name to this author list):
-“My Belly Has Two Buttons” written by Meikele Lee
-“Adventures of Super Tubie” written by Kristin Meyer
-“Thadvocate” (hold tight… next blog post will explain this endearing little term in more detail!)