It had been about two weeks and we desperately needed to get out of the house. With a two-and-a-half-year-old and an 11-month-old, that was about as long as I could take staying refuge in our one-story, three-bedroom home. I needed to see PEOPLE. Specifically, adults.
So I packed all the snacks, the extra clothes, the diapers, the wipes, the sippy cups, the mittens and hats. Then, I packed the big syringe, the tiny syringe, the formula, the bottle, the teragdem tape, the sterile water, the stethoscope, the pH strips. Off we headed to the early years center about 20 minutes away.
I wasn’t meeting a friend; I wish I had been. I figured it would be fine. We would go and the kids would play, and hopefully I wouldn’t need to spend 30 minutes feeding my baby via tube.
But a baby with a tube coming out of her nose is more of an odd sight than I assumed. Apparently people liked to avoid it. It wasn’t until a three-year-old came up and asked me, “Why does she have that thingy in her nose?” I smiled. Finally. After talking to about five other parents, someone brought it up. “That’s how she eats food. It goes right down into her tummy and I put the food through the end like this,” I told her and showed how it worked. She smiled, then kept playing. Later she came to me again and asked, “Why does she need to eat like that?” I told her my baby gets pain when she eats through her mouth, so sometimes she needed to have food this way. That was that. If only adults could be as transparent with their thoughts as three-year-olds.
You see, that is exactly what I needed—someone to acknowledge my little girl. I needed someone to ask the question they were all thinking but were too scared to ask. I needed that because otherwise I had a bunch of people looking at me and my baby strangely but not willing to ask questions.
I needed them to ask why.
I get it, I do. I didn’t even know what an NG Tube was before the first talks of my baby needing one. I get that it is uncomfortable to bring up an abnormality since you don’t really know how the other person is feeling or the story behind it. I get that it’s bold to ask and it’s easier to ignore. I get that you just don’t know.
But here is what you need to know about a mom with a tubie baby.
1. She doesn’t want the tube to be a taboo subject. Feeding her baby from a tube is a big deal and it becomes a significant part of her life. Just like breastfeeding or bottle feeding. Even more so, because of the time involved and everything else behind the scenes of tube feeding, it can easily consume the mama’s mind. It is OK to talk about it. It is OK to ask questions. It is also OK to not quite know what to say and to even let the mama know that. It is not OK to ignore the tube. Often, when this happens, the mama can feel judged, like her child is an outsider, or she can feel incredibly alone in her journey as a tube-feeding mama. Ask the questions. Start the difficult conversation. That mama will thank you for it.
2. Going somewhere takes extra long. Before heading out the door, on top of everything else mamas need to remember with young kids, this mama needs to remember all the “tubie things” and it would most likely be detrimental if she forgot. This can be incredibly overwhelming. Give her grace if she is late and even more grace if she cancels. Really, we should do this for every mama. Sometimes, in motherhood, just getting out of the house can be the biggest challenge of the day. With a tubie baby, this is even more so.
3. She doesn’t want you to be scared of having your kids play with her child. In case they . . . pull it out? Touch it? I don’t know. The tubie baby’s mama will know what to do when the tube tape comes loose or gets caught. Trust her judgement in that. Please just treat her baby like every baby. They like to play and laugh and be cuddled. They want to see other kids and play with other kids.
4. She is dealing with more than just the daily and nightly tube feeds. Whether her baby is diagnosed or not, she is going through with multiple appointments, testings, and more. Remember that the tube may be the only visible part of this mama’s very tough journey.
5. She needs your prayers. Oh, how she needs your prayers. Pray for her. Tell her you’re praying for her. Take time to pray with her. We get through on prayers.
It’s Feeding Tube Awareness Week, and if you know a mama with a tubie baby, will you give her encouragement? Will you send some extra prayers for her today? Will you even go so far as to send her a gift basket, or a meal, or even just a coffee? This journey is tough. It can feel long and never ending and simply draining. Surround her with love today.