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?

Oh My



Warning: Caleb may or may not be running around in his underwear in this video. That’s how we roll around here.

I love this video. To me, it shows what Charlotte has become. Who she is. What she is capable of doing. It shows the love she has for everyone around her. It shows her hope; her faith. This video tells me that there will be hard days, but she will be just fine. When I watch it, I see a future of pillow fights and pranks pulled on siblings. I see a little girl who is determined to be happy, and a big brother who doesn’t mind providing the entertainment along the way.

This video shows me that I have two beautiful, loving children. It shows me that no matter how rough the beginning may be, siblings can find a way to love each other.

It shows me that sometimes I worry a little too much.

It shows me just how blessed I am.

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!)

An Update

I haven’t written a post like this in awhile, but for recording keeping sake, here’s Charlotte Amalie’s latest medical run-down:

Weight: a whopping 7.8 kilos (17.5 pounds)

Length: 63.5 cm (25 inches)

Eyes: Her left pupil still dilates differently than her right (scaring nurses who meet her for the first time, and neurologists) but we now know that the eye is related to the paralyzed vocal cord. We have our next follow up in April, and hopefully she’ll still have a clean bill of health.

Vocal Cords: Left is still paralyzed, but she’s making great improvement with how well she is compensating with the right vocal cord. We’ve started actual speech therapy (not just feeding therapy with the speech therapist) and we’re slowly introducing sign language. She will be re-scoped in March

Lungs: Charlotte fluctuates from needing 1/8 to 1/4 O2, depending on her heart rate and her oxygen sats. She needs 1/4 a night about half the time, but can almost always be weaned down to an eighth by morning. She’s still taking her diuretics to keep her lungs dry, and also has a few inhalers that keep her open and breathing. At her last pulmonary appointment they said she is currently better than she ever has been. Awesome! We’re thinking that after RSV season, we might just be able to kick this oxygen. So maybe around May? We sure hope so!

GI: Charlotte’s now on 20 hour continuous feeds. She’s doing so so so SO much better on the continuous feeding than she was on bolus feeding. We have an appointment in two weeks to meet with the Complex Care Center at CHOP and we’ll decide then if we want to start condensing her feeds again or if we’re just going to roll with the continuous feeds. We believe that if she can just make it another 9 months or so, she’ll be developmentally much more capable of handling the reflux and such. So we’ll decide if we just keep plugging along for another 9 months or if we try to handle the reflux now. Handling the reflux now means another “event” is possible and she’s more uncomfortable, but it’s much more physiologically “normal” for her to have bolus feeds than it is for the continuous feeds. The continuous feeds help her reflux, but they stunt her gut and stomach development. So yeah, flip a coin. Any suggestions?

Developmental: Charlotte is capable of rolling over, but I wouldn’t say she’s rolling over. She’s done it a few times, but it’s not a daily occasion.  She’s also capable of sitting for 20 seconds or so. These are our goals to master by HER FIRST BIRTHDAY (holy dang, it’s a month away!).  Cognitively she’s doing well, tracking and interacting and playing a lot more than she used to. It’s amazing how quickly skills develop. We’re also hoping that by her first birthday she’ll be passing toys from one hand to another and that she’ll be able to reach out and grab something more efficiently. Currently she reaches for things, but she has a bit of a hard time actually grasping things in an efficient manner. We’re working on it :)

Medicines: Daily: Aldactone 2xday: Prilosec, Diuril, Flovent, KCL 4xday: Erythromycin PRN: Albuterol, mylecon, tylenol

Notice how I didn’t label anything Oral or Feeding? Yeah, that’s because she’s not doing it. She’ll put her hands in her mouth, and she’s much less sensitive in regards to her gag reflex, but still nothing by mouth. Another goal for her first birthday, I suppose.

And that’s our girl. Medically speaking, of course.

Voice

Charlotte had an appointment on Friday with the Ear, Nose and Throat doctor. He stuck a small camera up Charlotte’s nose and down into her throat to take a look at her vocal cords and her airway structure.

And here’s where we play the Good News/Bad News game.

Good News:
Her reflux appears to be better managed, and her airway is healing. She still has a stridor, but it doesn’t appear to be a long term problem. We’re hoping that within the next year, her airway will be completely healed from the damage done by reflux, intubation, and all the other crap done to her.

Bad News:
Her paralyzed vocal cord appears to be a permanent condition. The ENT encouraged us to start Sign Language, as it could very likely be her main form of communication. There’s also a very real possibility that she will eventually learn to compensate for having vocal cord paralysis and will be able to speak with only one vocal cord. In that case, her voice will most likely be rather soft, and a bit “breath-y”.

And that’s all we know at this point. We’re just rolling with it!