Feeding Tube Awareness: Why a tube?

One of the most common questions we get when someone meets Charlotte for the first time is, “Why?”

Why a feeding tube? Why a trach? Why did she come early?

Today, I’ll tackle the “Why does Charlotte have a feeding tube?” question.

Most of this is review for you all, but here it goes.

Charlotte was born at 23 weeks, 6 days. She was so early her esophagus wasn’t fully formed. For the first week of life, the esophagus and the stomach were not connected. They grew together after she was born. What does this have to do with the tube? Nothing.

But it illustrates how completely premature she was. How every part of her was premature. Her esophagus, her stomach, her intestines, her skin, her heart, her eyes, her brain, her blood vessels, her nervous system, everything.

At two weeks, Charlotte had a heart procedure called a PDA Ligation. One of the significant side effects of this procedure is that it can cause paralysis of the vocal cords. Which, of course, happened to Miss Charlotte Amalie. With the paralyzed vocal cord, she aspirated significantly.

Initially, Charlotte had a really good suck reflex. But every time she tried to eat by mouth, she filled her lungs, not her stomach, with food. This severely damaged her lungs. Not only did she aspirate by mouth, but she also aspirated by reflux–anything that was in her belly she would reflux up and then aspirate.

Yummy.

The only way to prevent the aspiration was to thicken her feeds to honey thickness. Due to her poor lung quality, sucking such a consistency out of a bottle was simply too much work for her. She would get exhausted after about 5mL. Eventually, she lost all ability to eat by mouth (due to pain from reflux and discomfort from aspiration), and to this day, she refuses to eat anything orally.

Feeding Charlotte for the first time at 165 days old

After a horrendous experience with aspiration pneumonia in September of 2010, we decided to have a g-tube and a nissen fundoplication performed. The g-tube puts food directly into her stomach, and the nissen fundoplication prevents anything in her stomach from refluxing past her esophagus. I wouldn’t wish a nissen on anyone– it’s pretty awful. She can’t burp, can’t vomit, can’t vent her tummy at all.  It can be very uncomfortable for her, but the nissen has literally saved her life.

Charlotte's PEG style feeding tube

 

There are a million reasons for a feeding tube. But here are some non-reasons for a feeding tube:

It’s not because she is a “picky eater.”

It’s not because we didn’t “try” enough things.

It’s not because she wasn’t hungry enough.

It’s not because we didn’t feed her.

It’s not because we didn’t try, we didn’t fight, we didn’t succeed.

It’s not because she “failed” to thrive, regardless of what a medical diagnosis says.

Charlotte's MIC*KEY button style G-tube. And a big smile

Her feeding tube nourishes and strengthens her daily. And for that- we will forever be grateful.

Feeding Tube Awareness Week : Why Awareness?

Did you know there’s a Feeding Tube Awareness Week? Did you know it’s going on RIGHT NOW? Exciting, right? I know, you can hardly stand it.

Awareness of tube feeding isn’t going to change anything for Charlotte. It’s not going to make her feel any better about herself (she thinks she’s pretty fabulous) and honestly, it doesn’t matter a lick to me if people think Charlotte’s tube is weird/gross/strange/lazy/unnecessary. People being aware of tube feeding wouldn’t change the way we feed her– we feed her when and where we need to.

People being aware wouldn’t change anything for Charlotte.

People being aware would change things for them.

Awareness is important to us, not because it changes anything about my daughter, but because it would change the way others see her. Awareness isn’t for us.

It’s for you.

It’s for your mother, your sister, your boss, and your best friend.

It’s for your cousin, your doctor, your uncle and your neighbor.

Awareness is everything this blog is about– Understanding.

Understanding.

Understanding that every family struggles with something.

And if we all understood, if we all took a moment to learn, to become more informed, to become more aware then maybe, we’d all be a little bit more willing to help. A little more willing to offer help when a kid is screaming in the grocery store instead of tisk, tisking.

A little more willing to strike up a conversation with a mother of a special needs kid instead of simply staring. A little more willing to say, “I don’t know your life, but I’d like to understand it.”

That’s what awareness brings. That’s why awareness is important to me.

That’s why awareness is important to Charlotte.

And that’s why it should be important to you.

Is it?

Update

Charlotte has been doing really well lately. We just had a follow up yesterday and here are her stats:

Weight: 9.8 kilos (21.6 pounds)
{15%tile for actual age/ 50%tile for adjusted age}
Height: 72 cm (28 inches)
{2%tile for actual age/ not on the char for adjusted age}
Head Circumference: 42 cm
{not on chart for actual or adjusted age)

Head: Charlotte has what’s called “microcephaly“, meaning, her head is more than 2 standard deviations from the average head for age and sex. More specifically, Charlotte has micoencephaly, which is a small brain, thus accounting for the small head. {We know this because Charlotte suffered a pretty severe stroke in the cerebellum, leaving very little brain matter in that space} However, luckily for Charlotte, she doesn’t appear to have a small head, so it’s all good. Her pediatrician just wanted it to be an official diagnosis. Yay for more labels. :)

Hearing: A new one, right? Charlotte’s had a bit of a “regression” in the vocal department as of late. Prior to our move, she was making vowel sounds, and the occasional consonant/vowel sound. Lately, it’s only been noises, which is good, because it means she can manipulate the vocal cord, but bad because she’s not making any progress verbally. We want to check her hearing to make sure this is not a factor in her speech delay. Right now, we’re only going for the standard hearing test, but if she still has a vocal delay in say, four to six months, we’ll have to go for a sedated hearing test.

Lungs: Doing well! We’re weaning her from some of her diuretics, and so far, so good {knock on wood}. She’s been consistently off of oxygen for over a month now, and we’re thrilled to see how stable she has been.

GI: Still the same. J-tube feedings 18 hours/day. We’re hoping that soon (in the next few months) we can start working towards G-tube feedings, and then possibly condensing those feedings so that they are at specific times (called bolus feedings) rather than the continuous feeding. The hope is that we can eventually get her to “eat” during regular meal times, and then start weaning those tube feedings so she can be hungry enough to eat by mouth. Basically, we’ve got a lot of therapy in our future. And I’m not just talking OT :)

Developmental: We’ve started with our new therapists here in California. We’re seeing Occupational Therapy twice a week, Physical Therapy twice a week and Speech Therapy once a week (maybe adding another one on? who knows). Charlotte has started to crawl since we’ve moved her, and we’re thrilled with her progress. She still has a problem with rolling over from her back to her front, so if she ends up on her back, she just pushes herself backward around on the floor. The back of her head will never have hair on it :) She is, however, transitioning from crawling to sitting, and from sitting to crawling. It’s not elegant, but it gets the job done, and you can tell how excited she is about all of it.

ENT: The ENT team here has pretty much taken over the role of managing Charlotte’s Sleep Apnea. Right now, that’s probably her biggest struggle. Last night, she had 10 desats, a few into the 70’s. She hasn’t needed to be resuscitated in almost two months, but she does need repositioning and stim to bring her out of some of the more significant desats. She’s starting to tolerate her BiPAP mask less and less, and honestly, I just don’t know what to do for the poor girl. We have an appointment the beginning of August with the Airway clinic (pulmonology and ENT together) so hopefully they will have some better ideas about how to help her sleep. We still don’t have a real reason why she’s having the central apneas, and for that matter, we don’t have a real reason as to why she’s obstructing. We’re mostly hoping at this point that she’ll grow out of it. But that can take years (if it ever happens at all) and kids kinda need to sleep :)

Overall, Charlotte is happy. She’s playing a lot more now that she’s mobile, and its awesome to see her and Caleb play together so well. Basically, I just love this gal. She’s a keeper (in case you were wondering!)

Feeding

Once a week, we have Speech Therapy, which primarily focuses on feeding. Or tasting. Or just plain accepting the spoon.

Miss Charlotte Amalie has never “eaten” by mouth. The most our little gal has ever eaten in a sitting is about 1.5 ounces of milk from a bottle. And yet, day in, and day out, we sit down with her, three times a day, to show her just how fun it can be to eat.

We play with food (put it on her tray and let her explore), and we taste food (tiny, tiny, TINY amounts on a spoon). We try boluses of food, we try scant amounts of food. We’ve tried holding her feeds, we’ve tried changing her calories.

Charlotte’s response is making me worried about her when she becomes a teenager. “Meh.” She’s already apathetic.

I know, I know, she won’t always be on the tube. And the reality is that she’s come a LONG way in the past six months. Six months ago, she would gag and retch and turn blue at the mere sight of the spoon. Or when you opened food near her. Or if she could smell it, or see it. Or if she just didn’t like you. (Not really, at least, that’s what I’m telling myself).

Now she will reach for the spoon and put it in her mouth. As long as there isn’t any food on it.

The really irritating part is the regression. Charlotte was a sickie-head (I hand out with a three year old too much) last week, with a simple GI bug. She weathered the illness remarkably well, despite her high temp and constant retching. (At one point she puked through her nose. I’m no doctor, but I’m fairly certain that with a Jtube AND a nissen, that is just not supposed to happen). Prior to her illness, she was allowing foods in her mouth without gagging. She wasn’t swallowing them, but that’s an entirely different battle.

This week? Nada. Gagging and retching again with the “introduction of food into the oral cavity,” as per her therapy notes. It’s just a nasty cycle. She has a negative experience with eating, so she gags to protect herself. Gagging and retching cause a negative experience, so she’s more likely to gag the next time food is introduced.

I’m exhausted by it. I’m frustrated that four tastes of baby food is “remarkable progress” for little Miss Charlotte Amalie. I’m frustrated that we’ve got years of this darn GJ-tube in our future. I’m frustrated that we’ve bypassed bottles and sippy cups. (I don’t know why, those things are a pain to clean. But I miss them none the less).

I’m frustrated that I have to accommodate her tube. Can she wear this outfit? How do we bathe her? Can she sit on the beach? How does the hole in her abdominal wall affect her core strength? How much tummy time can she do before her stomach contents leak out? (Gross, I know. It’s actually one of the least gross things that goes on in our house… disturbing.)

I’m frustrated that I have to love it. I have to love this darn tube because it keeps her alive. Thriving. Plenty chubby, let me tell you. I frustrated by the power it has over our lives. By the unyielding influence it exerts.

I’m mostly frustrated by the fact that the less CA eats, the more Oreos I seem to consume.

Just sayin’

Our Days

 Charlotte didn’t have a nurse today, so it was just me and her.

Or me versus her.

But that’s not important. Here’s a video of how our feeding session went today. All in all, she did awesome! Six months ago, she would gag and retch at the sight of a spoon, or as soon as you would place her in the chair. We’re so proud of how far she has come. Who knows what she will be doing in the next six months?

(I took this on my phone, so excuse the quality. And the ridiculousness of my voice while talking to Charlotte. And yes, we use bubbles to distract her.)