Tubie Talks | Tube Feeding Advice from Moms
Entering the world of tube feeding can be both scary and exciting. Whether you are embarking on this journey for yourself or helping a loved one, it is comforting to know that you are not alone. There are many families who have been in your position and want to help you out. After moving forward with a feeding tube placement, it is normal to have questions and concerns; therefore, receiving tube feeding advice from parents who have been through the same process is extremely valuable and reassuring.
Sentido Health was honored to celebrate Tube Feeding Awareness Week by sharing some of our tubie patients’ inspiring stories and precious pictures. While reaching out to these families, we also asked the parents and caregivers to share their advice for others who might be new to tube feeding. These parents jumped at the opportunity by responding with their best helpful hints and words of encouragement. Sentido is beyond excited to share their responses and hopes this tube feeding advice will help those who are just starting out.
HELPFUL TIPS
“Split gauze helps skin integrity!! It’s a hard decision to make but more often than not it’s a decision you’ll never regret. They can always be reversed if not needed for future use.”–Melissa, Mom
“As a mother, my advice would be to get an organizer for all medical supplies, a calendar for appointments, and give it time to process and accept this new change to your life”. – Victoria, Mom
“DON’T FORGET TO PACK YOUR CHARGER!” – Karletta, Mom
“Always double and triple check the ports are closed properly. It never fails to have a malfunction at the worst possible timing.” – Tiffany, Mom
“Go with the speed your tubie wants to go so you can get the best results without the added stress.” – Paula, Mom
“It is important to keep everything pertaining to tube feeding clean and sterile.” – Regina Coleman, Great Aunt
“A lighthearted piece of advice? Make sure the medicine port is shut, especially at night. Feeding the bed is something we all have happen…and the couch, ceiling, walls, the dog, the car seat, etc.” – Elizabeth Kulp, Mom
WORDS OF ENCOURAGEMENT
“Be patient. I know it seems complicated, but you will learn fast and get the hang of it in no time!” – Elena, Mom
“My advice would be to give it time. In the beginning, it was such a lifestyle change. We made plenty of messes and we learned from our mistakes” -Tiffany, Mom
“Don’t give up on pushing your child’s independence. They can help with their feeds; they can educate others around them about tube feeds.” – Lawren, Parent
“My advice would be to breathe and don’t be afraid. It’s scary at first but it’s worth it to have happy healthy kiddos.” – Iva, Parent
“Setbacks are normal, and breaks are okay, even if it takes a couple of months.” – Paula, Mom
“Have patience. It’ll come like second nature with time.” – Cristal, Mom
“You are still a good parent even if your kid feeds by a tube. Kids can still thrive and be happy even if they tube feed.” – Whitney, Mom
“Don’t give up. Things will be hard at first, but it gets better and easier as you learn.” – Pauline, Mom
“You will have a long road ahead of you and things that used to not be important will become more important than you could possibly imagine but keep pushing on and you will realize you can accomplish anything.” – Nancy, Mom
“Allow the kids to be kids sometimes I think I am the only one who knows there is s Mickey Button because Aiden just lives his life.” – Regina Coleman, Great Aunt
“Take a deep breath. It is terrifying at first, but soon you will be hooking them up for a feed in the dark like a boss.” – Elizabeth Kulp, Mom
“Be patient always! Patience is the key” – Jessie Sanchez, Mom
“Tube feeding has been life-changing for us and has truly saved us.” – Laura Belcher, Mom
“At first, It’s very different and not easy. You have to change your life around and work around these changes. Our daughter is currently on continuous flow, and she has to take her backpack with her 24/7. Sometimes it’s hard because you see your older kids walking around and running, but no matter what, these tubie babies are very strong and happy.” – Mascedia, Mom
SUPPORT
Adjusting to the life of tube feeding may take some time but giving yourself and your child patience will result in an easy transition to the enteral nutrition world. With continued support from tubies around you, correct tube feeding supplies, and adequate knowledge of what you need to know about tube feeding, you and your child will start to reap all the benefits tube feeding has to offer. Do not hesitate to discuss any healthcare concerns about you or your child with your healthcare provider and reach out to parent support groups when needed.
JOIN #TUBIETALK
If you are a part of the tubie world and find these helpful hints and words of encouragement useful, please feel free to leave your own tube feeding advice HERE to support others around you!