Today’s topic is “Been there, done that” where current tubies are encouraged to share advice to those who are new to tube feeding. So, here are a few pieces of advice for anyone new to the tubie world.
First and foremost, I’d want new tubies to know YOU ARE NOT ALONE! Not only is that this year’s FTA Week theme, but it is probably the most helpful advice I can offer. Knowing that there are others out there in your situation is one of the most helpful realizations. I encourage new tubies/tubie parents to find local resources. Join the Feeding Tube Awareness Foundation’s facebook page and look for others in your area. It took me far too long to realize that finding others who understand is important for your own mental health. As parents, we often forget to take care of ourselves because we are so busy taking care of and worrying about our children.
That brings us to the second tip, take a deep breath and take care of YOU! An over-stressed, tired, sad, scared parent is NOT helpful for a child. Your child needs you awake and refreshed. Don’t be afraid to take a few minutes to yourself!
Third, everything IS going to be okay! Entering the tube feeding world can be extremely overwhelming, but no matter what you think, you WILL get the hang of it, you WILL learn how to do it all, you WILL be able to teach others, you WILL inspire others, you WILL become the expert! You might even come to love the tube! We certainly have. I blogged about our list of pros and cons, take a look.
Fourth, (this one comes from Joseph) pay attention! The tube definitely takes some getting used to, so be careful to pay attention and know where the tube is at all times. About 2 months after we came home from the hospital, Braxton was connected to the feeding pump laying on our couch. Joseph went to sit next to him, and unknowingly sat right on the extension tubing and pulled the button completely out…balloon and all. Braxton cried a little, and then we saw his shirt was soaked with milk. As we moved his blanket, we realized what had happened. The doctors told us what to do, but we still panicked. I finally got a hold of myself, took a deep breath, and remembered what the doctor told us about putting the button in. I deflated the balloon, softly pushed the stoma back into the hole on Braxton’s belly, slowly added water to the balloon, and then sat and hugged Braxton until he stopped crying. We felt horrible. After a few minutes, Braxton was just fine. There was no blood or anything, and I think we were more scared than Braxton was. I would add to not be so hard on yourself if it does happen. You aren’t a bad parent, it can happen to anyone! We learn from mistakes…if you aren’t screwing it up, you aren’t learning!
Fifth, don’t be afraid to ask questions. Ask the doctors, ask other parents, send questions to FTAF. You don’t know if you don’t ask. Not just about tubes, but don’t be afraid to question your doctors. If the doctor recommends a formula or procedure, don’t just say okay. Ask why it’s necessary, what they are looking for, what your other options are, and if something doesn’t sound right don’t be afraid to challenge them on it. YOU know YOUR child best! Always remember that YOU are the only advocate your child has, so don’t be afraid to stand up for them.
Tomorrow’s topic: “We Can All Use A Little Help” What we want friends and family to know about tube feeding, and how to be supportive.
For all Feeding Tube Awareness Week posts, click here!