On February 12 of last year, I stood in the Neurology imaging department of Children’s National Hospital. I clutched tight to Rae’s Minnie doll looking out the large windows and saw large colorful hot air balloons suspended from the ceiling. The people roaming the halls were cheery in a way that kind of made me uncomfortable. Didn’t they all know I just handed my 11 month old baby off to have an MRI done? Didn’t they know they this was not a happy place? Didn’t they know this was a place where I had to watch my baby have a gas mask placed over her face until she went limp in my arms?
Of course they didn’t, but it felt like they should.
As I kept staring at the balloons while Big S went to get food, and my phone rang. It rang, I saw the number flashed, just as I had been expecting it to. Rae’s GI explained that enough was enough and we needed to do something to intervene with her weight issues.
A feeding tube.
After months of being failure to thrive and struggling to put on any weight with consistency, they were finally going to do it. We’d been in the office a few times at her pediatrician and once at her GI where they would call the hospital’s attending doctor and talk about if it was necessary or if we could give her more time. We watched her weight plummet with every ear infection and cold she would fall stricken with. I watched while I my niece and other friends children gain weight and would take on buddha bellies and chunky cheeks that are so precious you just want to bite them. It was hard for me. I remember bartering with my sister, saying I’d give Aurora some of Rae’s hair if she’d give Rae some of her chunk. But apparently science doesn’t work like that.
We had tried everything until that point. We thought she was allergic to something getting passed through breastmilk, so I did an elimination diet free of dairy, soy, wheat and eggs. We tried switching her to formula. Then to a high calorie formula. Then to a high calorie formula with duocal (powdered calories). We pushed any and every food she would eat. I would obsess over food diaries and logging her exact in-put and out-put down to the ounce and tablespoon. She was even evaluated by a nutritionist who said everything she are by mouth sound be enough to sustain her, but her body wasn’t processing things right. It just wasn’t working anymore and she was getting weaker.
That’s why she in that MRI in the first place. We watched her body getting weaker and she was regressing. Her legs would bow in whenever we tried to get her to put any weight on them. She had periods of absolute lethargy. Our almost one year old couldn’t grasp things with small movements, which was a basic move for a 4 month old. It was scary to watch. We drove home from her MRI, and I sat in the back with her. I stared at her face and soaked in every inch of her beauty that was about to be covered with an undeniable alien element constantly taped to her cheek.
A week later, Febuary 18, I held my baby again as they wrestled to put her to under to have her endoscopy and her NG tube placed. I’ve held her limp body asleep on my chest countless times, but there’s something that makes you feel so broken inside when handing over your baby and walking away to an empty waiting room. And you know when she wakes up everything is going to change.
And you know when she wakes up everything is going to change.
An NG tube is a feeding tube (either yellow or clear) that has a small opening on one end and a port on the other. The end with the opening is threading up the nose, down the esophogus and down into the stomach. The port on the other end will either be hooked up to a feeding pump that slowly regulates formula flow, or something called a bolus feed where you slowly feed formula through a large 60 ml syringe. To put the rest of her very long history shortly, Rae’s gone from an NG tube, to a surgically placed PEG tube, which is a feeding tube that delivers her food directly into her stomach through a tube. Then she switched to a lower profile mic-key button several months later.
Let me preface by saying I’m very thankful for modern science that’s given Rae the health and nutrition she needs to thrive. I’m glad her tube has given her the opportunity to have a fighting chance against whatever is messing with her tiny little body and trying to slow her down.
BUT, tube feeding this past year has been hard. It feels normal after a year, but it does not feel any easier. It’s been a year of hospitalizations, fear, infections, formula spills, beeping pumps, questions of diagnosis, stares, well meant advice, wet beds, and an underlying feeling that I’m totally alone in this. There’s a cloak of defeat that covers you with shame and awkwardness when you have to resort to a feeding tube. It’s grasping at desperation to do anything, the most drastic thing, to get your child to where she needs to be. It feels like failure.
I stopped talking about the tube in the past few months. I stopped talking to my friends about it and mostly swore off blogging about it. I feel like people would just stare, unknowing what to say, when I’d mention the times I woke up at 3 or 4 to refill her feeding tube bag, or waking up to her unplugging the port and soaking her bed. I stopped talking about the stares when she wears her backpack and the uncomfortable questions I’ve had to answer.
Why don’t you just feed her ice cream and cookies?
So what’s wrong with her?
What’s that thing in her nose?
Can she breathe?
But WHY can’t she just gain weight?
So that THING is just in her stomach??
They don’t know any better. They don’t understand it, and how would they unless they lived it? But it makes talking about it complicated. They can’t contribute to the conversation. They have no opinion on the matter. They don’t understand the emotion of feeling hopelessly alone in your world that revolves around keeping a child healthy. And I praise God they don’t know that hurt.
I guess I just miss the normalcy. I miss watching her play, and not having to follow closely behind to check her belly. I miss the sound of her quietly breathing while she sleeps, a sound that’s now drowned out by a whirling pump. I miss her room without medical supplies covering it. I miss the times she could hear a beep without crying out “MY TUBIE!” I miss blowing raspberries on her tummy without worrying about being too close to her tube. I miss being able to rest her butt on my knee, stomach up against the sink to wash her hands. I miss her room that smelled of lavender lotion that is now covered in a stench of hypoallergenic formula. I miss not having to check drainage around a wound that won’t fully heal. I miss the memories of a life before syringes, and extensions, and swabs, and error messages on pumps. I miss having her be “normal.”
Yes, the tube can seem so wrong, so frustrating, such a fault. I can feel isolated, worrisome, and frustrated about her feeding tube.
But I also have felt such incredible joy this year.
There’s a thankfulness that comes with a feeding tube.
A sigh of relief only known by moms with sick kids who know that even if the strength to eat is not there, there is hope for nutrition to make them strong.
There’s an overwhelming gratefulness that is shown through a pound of weight gain within just 2 WEEKS of starting her on a feeding tube, a weight gain that had previously taken her 3 months to do on her own.
It’s a moment of confidence I feel after being told by, not one, but 2 mito specialists we’ve seen that getting Rae a feeding tube was the best thing I could have done for her.
You feel a weird sense of pride when your son explains to his sister “Your tubie helps you get big and strong, beautiful!” when she cries about me cleaning it.
Yes, she may be small, but she is mighty.
It’s true, a child with a feeding tube can make you feel like you failed.
But in all truthfulness, I know, Big S and I made a decision that gave her a fighting chance to be that funny, dancing, laughing, feisty, smart little girl that she was meant to be.
God is within her, she will not fall. Psalm 46:5