A Girl and Her Tube

By Jackie (Farris) Salzwedel
   I used to live my life taking every day things for granted and I didn’t even realize it. I’m sure that we all have at some point. For example… what do you do when you’re hungry? You eat. Well, what if eating was so painful that eventually you just gave up and stopped altogether? This is how the story of my daughter Brynlee’s journey with a feeding tube begins.
Brynlee Alexa Salzwedel entered this world on June 19, 2011. Little did I know then that this would be the biggest and most life-changing challenge that I have ever faced. At about four weeks old, Brynlee began to act extremely fussy all of the time, especially with bottling. Realizing that she wasn’t “just fussy,” she was eventually admitted to the hospital where she would stay for two weeks.
During this time, she endured test after test; including being intubated and put under anesthesia for a scope, in an effort to get to the bottom of her issues. Ultimately, her diagnosis: severe reflux and milk/protein intolerance. We left the hospital with a feeding tube that went down her nose and directly into her small intestine (an NJ), through which she was fed around the clock.
Two months later, at the age of four months, Brynlee had surgery to get a more permanent feeding tube placed. This time, a tube was placed directly into her stomach (a g-tube). Her g-tube is a discreet little button that we hook up to an extension tube and feeding pump. Her formula runs through the pump and is measured out automatically once you set the rate and dose. Each type of feeding tube comes with its own challenges but I prefer the g-tube. The NJ tube that she had previously was constantly taped to her face and was hard on her sensitive skin.
Feeding tubes are a lot of work, no question. A lot of time is spent mixing up formula, priming tubing, washing syringes and extensions and most of all, trying to make sure that the button doesn’t get pulled out! We do a tube change every couple of months at home and have frequent follow-up appointments with the feeding clinic to check progress and weight gain. We have less frequent appointments with the surgery team to ensure placement of the tube and to make sure it is the appropriate size. She also gets therapies to help her with eating, communication and gross motor skills.
Brynlee, now 15 months old, has come a long way with eating orally despite all of these challenges. She is now eating mostly table food though she recently was put on a milk-free diet. She has good and bad days and doesn’t always take in the volume of food she needs. As far as fluids by mouth go, she’s not a big fan. This is what I believe will hold us back the longest from being tube free but I am confident we will get there eventually!
Currently, she receives a feeding through her tube twice each day and then is on a continuous drip for 10 hours at night. The night feeding has been my biggest challenge; it’s difficult to figure out the best way to get her extension tubing taped down and secured so that it doesn’t put too much pressure on the tube itself when she is moving around and so that it doesn’t get kinked so that the pump alarms.
When we started this journey I was clueless. I never thought much about feeding tubes before we were thrust into this world that is now our “normal.”  I didn’t really know anyone else at that time who had been through a similar situation and felt that besides the nurses, I didn’t really have anyone to turn to. The nurses are wonderful, but even they don’t live with these feeding challenges every day. They don’t know all the little tricks that you, as a parent, eventually learn… sometimes the hard way! And, while feeding tubes can be intimidating and scary at first, they really are an absolute blessing to the children who need them. Without a feeding tube, the most amazing little person that I have ever met would not be here, period. Therefore, I have made it my mission to spread awareness and be a support system to others who need it.
What can you do? I encourage you to look further into this world of feeding tubes. I want you to ask questions. I challenge you to take something that you learned from our story and teach it to someone else. Together, we can get the word out. Together, we can spread awareness and educate people on a topic that is being seen more and more. I started a blog to help me do just that. You can visit it at brynleethesupertubie.blogspot.com.
Nothing about this journey has been easy, but everything about it has taught me something. For that reason, I wouldn’t change any of it. Every piece has helped to shape that little girl into the beautiful, strong, resilient, inspiring little spitfire that she is today. Every piece has helped to turn me into the person that I need to be to embrace this challenge and turn it into something positive. I wouldn’t change any of it because sometimes the things we can’t change end up changing us.

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