What I Wish You Knew about Rae and Her Tube.

6 months ago Rae had her NG tube placed.

2 months ago she had her gtube placed. It’s been an exhausting transition. I don’t know if I would even consider myself transitioned fully, its a constant learning curve.

It’s been months of negativity and awkwardness, mixed with moments of sheer joy.
There have been times I’ve cried myself to sleep, and nights where we don’t sleep at all.
We’ve had stages of frustration and points where Rae was unstoppable.

Rae looks healthy. And for the most part, she is just a normal little girl. She jumps. She fills the room with laughter. She fights (Oh, she fights). She’s feisty. But her tube makes things complicated in almost every aspect of our lives.

Getting out the door takes 3 times as long. Get all her medical supplies. Set up the bag. Prime the pump. Hook her up. Get her in the car. Situate the backpack and tube so she can’t unplug herself. She unplugged herself. Pull over. Fix the tube. Ask Little S if she’s chewing on the tube. She is. Pull over. Unplug her. Get to destination. Re-situate the backpack. Every. Single. Day.

People can be cruel. When she had the NG tube, it was very obvious she had a medical need. I thought it would go away with the Gtube, but then we had to do continuous day feeds. So now she’s required to carry around her backpack half the day (Yay! We’re down to only 17 hours a day). You’d think children would be the ones making weird comments about her backpack or tubing hanging down her shirt. But really, you tell them once it helps her eat and they accept it. But adults can be just mean. Maybe I’m overly sensitive, but a side eye or someone staring at the tubing that isn’t 100% hidden can make my heart ache. Then there are people who ask questions with such disgust.  A lady and I had a little chat last month while in the waiting room to get lab work done had this to say:
“Why are you making her carry that huge backpack?”
“Well, actually it’s for her feeding tube pump, which is less than a pound. She usually doesn’t mind having the backpack on, and if she does, I take it off and give her a break.”
“Why does she need a feeding tube?”
“She’s having issues maintaining and gaining weight on her own, despite having adequate nutritional intake.”
“So what’s wrong? What does she have?”
“We’re not entirely sure. They suspect it’s a metabolism disorder.”
Then this woman actually started grumbling at me while rolling her eyes. Like I had done something horrible to her and Rae. I later heard her whispering to her husband when he returned from checking in as she glared at me and Rae.
Listen people. No doctor is going to perform a surgery and place a feeding tube in a one year old unless it is absolutely medically necessary. Please, please, please don’t question a mother who is already feeling like a failure.

Medical supplies are everywhere. In any given nook and cranny at my house I can find you a bolus syringe, a 5 ml syringe, 3 rolls of medical tape, tendergrips, gtube pads, a feeding bag, a few backpacks adapted with holes in them to make for easier access. You’ll be welcomed into our home to the sound of a feeding tube beeping due to air getting processed into the pump. And the sweet aroma of Elecare junior will be burned into your nostrils. Rae’s room is surrounded with wires and chargers and pumps. There’s an enormous stack of crib sheets for the inevitable change of sheets that has to be done at least 4 times a week. The walls are lined with boxes filled with feeding bags and pump manuals. And her shelves are filled with dressings to cover her tube and medical tapes that cost more than a car payment.

I am emotionally drained. As I’m reminded from time to time, Rae is undiagnosed. She is doing really, really well right now. But it’s hard to feel like we’re just treating symptoms and not figuring out the underlying problem at hand. She can do PT and OT and take medications to help with her GI issues. She can have constant gtube feedings and do pretty well getting some weight on her. But it’s frustrating (to say the least) to not know why she can’t sustain herself on her own. It’s frustrating to not know why all she has so many illness. And why can’t they see anything on her scopes, though we know her GI tract is not metabolizing food correctly. And why does she have low muscle tone? Yes, these are all things we can work on and “solve”, but not knowing the underlying cause for the issues makes me worry about what the future holds.

I feel like I have to hide her sometimes. I posted a picture of her last week with her stomach out and I felt really weird about it. I felt like I was going to make people uncomfortable. I try to plan accordingly and not make her wear her backpack when we’re out. I shift her shirts constantly trying to hide the tubing and keep it tucked into her shorts so no one can see it. I’m not ashamed of it, but I’m so intensely aware that it tends to make people uncomfortable, that I feel like I have to go out of my way to make sure it’s concealed to keep her safe. I want to make her feel normal, and no one feels normal when they’re being stared at constantly. I know the tube is unusual. You don’t see it everyday where a kid has a small hole and tubing coming out of their side. It overwhelms Big S and I too. But I know she’s a gorgeous girl and a little tubing shouldn’t distract from that.

Play dates actually kind of suck. Since she’s been in the hospital, Rae has been much more clingy. She get’s overwhelmed easily. And she doesn’t like other people as much. She cries if I put her down near other kids and try to walk away. But what causes an even bigger hindrance on our play dates is her tendency to unplug herself whenever we go out. It seems like the moment she warms up to a start playing on her own is when she finds it a perfect opportunity to unplug herself and I find a small path of formula following her wherever she goes. Friends, I’m sorry. I know its disgusting. It smells like rotten baby food that has been sitting in the sun for days. It’s horrendous. I get really embarrassed feel like we should just not go to play dates anymore. Or like I should just stick it out and skip the feed and do nap and evening feeds. But this isn’t always possible. I’m sorry your kitchen now smells like my entire house.

Tube feeding terminology is used daily. Bolus feeds. Priming the pump. Flushing the tube. Clamping the tube. Cleaning the stoma. Tendergrips. Gtube belts. Gtube pads. Granulation tissue. Cellulitis. Continuous feeds. Port. PEG. Button. It all sounds very scientific, but it’s not.

I hate the tube. It seems to make things just a little more complex. She trips over it. I spend my evenings calculating the ounces she’s gotten that day and figure out if she needs extra the next. I wake up in the middle of the night in a mothers-intuition-based panic and find the extension tubing wrapped around her neck. I wake up to an unplugged port and a soaked bed. She hates having her stoma cleaned, but its essential to making sure she doesn’t get an infection. I hate feeling like I still have no clue what I’m doing and no one who understands the struggles of tube feeding.

I love the tube. As complex as it all is, I’m so thankful for medical interventions like her gtube. It keeps her nourished and helps give her muscles the strength they need. It helps her thrive until we do find the cause for her issues. It helps her maintain and gain weight. It gives me peace of mind to know I’m somewhat in control of the nutrition she gets. I love how brave and patient all this has made Rae.  Her tube gives me one less thing to worry about with her. I don’t have to stress about her losing weight (usually). I know she has everything she needs to thrive. I love the way her face lights up when we put on her favorite backpacks and gtube pads. I love the way Little S is so quick to tell me how “Rae’s tubie makes her big and strong.” I love that the tube gives her the nutrition to make her happy and energetic and the feisty little girl she is today.

M

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