My Baby is Fed Through a Tube

I’ve gotten quite used to the look when I say “My baby ate this or that..” and they say “Oh I thought they couldn’t eat solid foods?” and it ends with my explaining that she’s fed through a tube, and they try to keep the “That’s weird” look off their face… I think any of us who have a g-tube fed baby understand that look! However, it’s not their fault – our babies are fed through a tube, and it IS strange. 

There are a lot of emotions that come with a g-tube fed baby. It’s almost like a cycle – like everything else we do as a medical parent! It’s almost like the cycle of grief (if there is such a one), where we go through different steps to get the end result. Something like this… 

• Denial & Anger– I remember the very first time someone mentioned a feeding tube to me was when my daughter was 4 days old – we had no idea what was wrong, some days she was great and others she wasn’t. She wasn’t gaining weight as she should’ve even though we were doing everything we could. When I heard the word “tube” my defenses grew SO high! “She doesn’t need a tube!!!” And at the time, I was right – we just didn’t know that very soon, she would need a tube most likely for the rest of her life. When the actual NG tube began, I fought so hard to get my girl to eat – I felt helpless. The tube was the enemy, and I had to fight for my girl. When I heard things like “some people get g-tubes just for meds” I laughed and wondered how someone could ever do that (not knowing that I’d soon know exactly the feeling!) 
• Depression – This comes and goes. It never goes away, much like the agony of losing a loved one. And that is what I want to focus on here – you HAVE lost something. Your expectation of your life, your child, what others have that you don’t, etc. In your mind you created an image of what you thought life would be like, and it is gone forever. On top of that, it is grief to watch your child be fed in a “gross” way. A medical process instead of an emotional process. My girl is still a baby, so she doesn’t even know what she’s missing – but I do. And it’s just sad! Depression… it comes and it goes. It is a constant. Some days are better than others. 
• Acceptance – I remember being so excited to get the NG tube out and get a g-tube! The stories I heard about how easy it is compared to an NG tube, and how if they get it as a baby they won’t even know it’s there half the time. Now as she’s had the g-tube for almost a year now, it’s something I’d be scared of losing. Every day, I know my baby is being fed – I know how much she takes in, and I know she’s not aspirating. I can also give her meds for her disorder and she won’t have to taste them or know she has to take meds every day. Motrin and Tylenol? Easier than ever! When she’s sick, I can keep her hydrated. When she’s paralyzed? I can feed my baby. It’s not just acceptance- you realize what an immense blessing it is. 

My baby is fed through a tube – yes, it’s rough. But it’s also one of the reasons she’s with me – one of the reasons she has so much energy that she does. She can play with her toys instead of using all her energy to try to suck a bottle or learn how to eat food. She can have the blessing of feeling full and being hydrated – and that is a huge blessing for us all.