Hailey and Charlotte

“Find what works best for you when it comes to all aspects of your feeding tube journey and don't let your feeding tube hold you back!”

Tell us your story! What do you love to do?

We live in a small, rural town with my parents as we quickly outgrew our tiny home and needed some help as Nick began being a stay at home dad a month into Charlotte's journey. I coach volleyball and Nick coaches basketball so we enjoy attending many sporting events at the school which I also teach at as an Intervention Specialist. We also love family game nights and going on walks together.

Please tell us about Charlotte's health journey - whatever you feel comfortable sharing.

While I was pregnant, Charlotte was diagnosed with Trisomy 18 three months before her due date, April 4, 2018. Being told time and time again that she was "incompatible with life" we chose comfort care as our birth plan for Charlotte. We gave birth at our local hospital where we planned for no interventions because we wanted to be able to give her all the love we could before we would be leaving without her. Little did we know that Charlotte had other plans and we took her home three days later on hospice.

That first month of her life she had many check-ins by her nurse and we were given all of the preparations necessary to keep her comfortable. As the days progressed, Charlotte was showing us she was a fighter and we decided at the end of April to begin seeing some specialists.

At a month old, she had a breathing scare and we ended up in the PICU for a couple of weeks. During that time, Charlotte was given many tools and began to add many specialists and diagnoses on top of the Trisomy 18 diagnosis. We learned that she was aspirating while trying to eat that first month and she was labeled failure to thrive which required an NG tube. Along with that, she was given a bi-pap, oxygen, medications, etc. for the many complexities we were beginning to learn about which included specifically her heart, lungs, and kidneys.

Eventually we made it back home and moved from hospice care to home nursing! Charlotte was thriving and although there have been scary, unknown moments along this journey, she continues to thrive and is now a sassy five year old who is about to begin kindergarten in the fall!

What was your initial reaction when you first learned Charlotte would need a feeding tube?

The initial reaction to needing a feeding tube was nerve racking. Charlotte began with an NG tube at a month old and was able to transition to a G-tube a few months after turning one. Knowing that the feeding tube was what she needed to thrive I did not second guess the judgment of her doctors to begin the feeding tube journey, but it was nerve racking because it was unknown territory. I had heard of feeding tubes, but I had never had to personally work with one so the anxiety of making sure I was properly taking care of it, understanding exactly what to do, making sure she didn't pull it out, and many of the other worries just weighed heavily some days.

What would you like to say to other Tubie families or individuals?

Find what works best for you when it comes to all aspects of your feeding tube journey and don't let your feeding tube hold you back! Do what you set your mind to whether you have a Tubie or not!

What advice do you have for a Newbie Tubie?

Although it might be scary to start this journey, make sure that you ask any and all questions that you have so you can feel comfortable taking care of yourself or your loved one. Let no questions be left unanswered as it will make this transition much easier and you'll be a pro in no time! Don't let it hold you back from doing the things you love and enjoying any adventures you want to take!

How did you tube feed before the FreeArm Muscle?

Before using the FreeArm Muscle, we tube fed using an IV pole and we did not leave the house often as it was a struggle with putting her pump and food in a backpack and having to carry that, her oxygen, bi-pap, and medical bag anywhere we went.

Where is your favorite place to use your FreeArm Muscle and why do you love it?

Using the FreeArm Muscle has given Charlotte and us much more freedom when it comes to traveling and even just moving around the house. We love the ease of being able to put it right on her wheelchair and head out the door for our many adventures!