Get a Kix out of Food

Kix Cereal is fantastic for feeding therapy. Here's the game we played with Seraph today:

1. get a small bowl and some Kix Cereal (or anything small and spherical) 
2. put one Kix ball just inside your mouth and then blow it out into the bowl and count, "ONE"
3. Now put a Kix ball in Seraph's mouth and tell her to blow it into the bowl and count, "TWO"
4. Let her have lots of turns, but do it again yourself if she starts freaking out.

The beauty of this game is that you're telling her to spit it out.  So, she doesn't freak out that something is in her mouth.  Yet, it's in her mouth long enough for her to lean over the bowl. This gives her time to taste it AND time to manipulate it around her mouth with her tongue.  Put it under her tongue or in her cheek.  Yes, she let me put it in her mouth. The most important part is that you're showing her to spit it out...and telling her to spit it out.  This is what makes the game non-threatening.

Other games we play with Kix cereal:

1. pick up the balls one at a time with fingers and drop them in the bowl and count them
2. blow them across the table
3. put them just inside your lips and then blow them with a puff of air (Seraph finds this game so hilarious, she forgets food is touching her mouth).

Day One

Oral Feeding.
It's time to get this little girl eating.  We took a break from feeding issues for a whole month.  It's been really good for her.  She seems more interested in tastes than before.

I grabbed the NUK/Gerber Healthy Start Training Toothbrush Set

at my local grocery store. Seraph loves them! She chomps away both near her front teeth and near her molars. She likes them even when I dip or spray them with food. Amazing!

She also let me blast her with this sour candy:

Quick Blast Sour Candy Spray - Kidsmania

It just squirts out a tiny bit of the candy when you press the black piece on top. Last time I tried something like this, she'd gag and drool it all out. It helps that her siblings are so excited to try it, too.

I also got miniature marshmallows and threw them up in the air so they'd fall like rain. Seraph thought this was hilarious. I didn't expect her to eat any. But, a few minutes later I saw one in her mouth. She tried it out for a while and then pushed it out of her mouth with her tongue. She really hates anything sweet so this was a huge step for her. 

Goals for August:

1. She will tolerate 5 different flavors 
2. She will put things in her mouth even if they taste like food. 
3. She will sit at the kids' table for at least 5 minutes while we're eating lunch and dinner. 

We're still brushing and flossing her teeth every night. This helps her oral aversions a TON. She LOVES brushing now (used to really hate it, though).

We'll be doing lots of oral play with the toothbrush training set and anything else I can get her to chomp on. (like the rubber ducks. we have about 30 rubber ducks. It started as a collection from doctor's office visits, but now we buy them, too. I don't allow the kids to play with them in the water because I don't want them to get all gross inside.)

We'll also be giving her new tastes of food as often as possible. Hopefully we'll find a flavor that she likes enough to tolerate two tastes of it in a row.

Wish us luck!

Leaks

Seraph whined for an hour today before I figured out her gtube was leaking.  Her shirt was so dark that I didn't notice the stain.  I tried all sorts of things and finally decided she just needed a nap...but couldn't calm her down. Right about the time I started to get worried, I patted her tummy and her shirt squished.  Poor girl.  I told her to just use her words next time.  I think she ignored me.  She was lots happier cleaned up and in dry clothes.

A few weeks ago her GI doctor told me to check her gtube every 4-6 days.  He said sometimes they get a slow leak but if you check it often you can refill the balloon instead of inserting a new one. I refilled it.  I'll check it again tomorrow to see if it's a slow leak or needs to be replaced.  It was only half a ml low, but that was enough to leak.

Beautiful Rabbit saw me making a collage on picnik. OOoooooooh!!  She wanted to try it:

You should try it - it's fun.  :)

Melts in your Mouth

Seraph is still fed via her gtube....and we're in the process of teaching her how to eat.

Twice a day (it's supposed to be every meal but that never happens), I strap Seraph into her chair and shove three bites of food into her mouth.  Breakfast is apple-cinnamon stars!  They melt in your mouth so I just grind them into her teeth a bit.  The cinnamon is pretty potent for baby food.  Her taste buds are fully in now but she's not used to tasting anything.....so we're working on getting used to tastes.  She HATES it!

I leave a sippy cup in reach.  (Filled with water, but I sometimes add some juice to the water)

The food does NOT go over well. Ever.  But....she often grabs the sippy cup to help get rid of the flavors in her mouth.

When it's over, I have to wait til she's not crying before I can get her down.  I usually hand her the sippy cup or put it down low where she can grab it.  Sometimes I spy her sipping from it later.  Yay!

Today I scooped up Angel and fed her the same way right along-side Seraph.  She was a good helper!  She helped me blow Kix around the table, too.  (Seraph gets a big kick out of blowing the tiny Kix balls across the table...it helps distract her so we can take bites of food more often.)

It's incredibly important to Angel to show everyone that she can do anything her siblings can do -- even her lil sister ;)   So, she LOVES being treated like Seraph....even if it means eating baby food.

Why G-tubes are better than NJ-tubes

Seraph has a G-tube for food and meds.  She has lots of oral aversions and doesn't eat orally yet.  You can read about her G-tube here.

Before her G-Tube, Seraph had an NJ-tube which is a tube inserted through the nose and threaded down to the tummy. (NG-tube is to the tummy, NJ-tube is threaded all the way down to the small intestine.  This must be placed under floroscopy at the hospital)

Many preemies have an NG-tube.  It's fine when they're tiny.  But as they get better at grabbing things, they're always taking it out.

When the doctors started talking about a g-tube for Seraph, I searched the blog world for pro's and con's.  I didn't find much.  So, I wanted to weigh in on the subject.

I LOVE LOVE LOVE Seraph's G-tube.
-her oxygen stats are noticeably better without the constant tube in her nose.
-she used to get nosebleeds all the time when she had the nasal tube. (Blood thinners are common for CHD kids, so the bleeds would be hard to stop.)
-it was impossible to suction out her nose for colds (which did lead to worse colds)
-We can easily vent her tummy (this is like burping - but easier to do! plus Seraph can't actually burp now that she's had a Nissan to correct her GERD.)
-easier to place the g-tube--faster and you can do it at home!!!  (Yes, you have to carry the kit with your baby all the time, but after you do it the first time you realize it's not that big of a deal - like putting a ointment and a bandaid on a ouchie)
-her oral aversions have lessened (but not completely disappeared) since giving up the nasal tube.
-no more taping her face -- red, raw, weeping skin on her cheeks
-once she learns to eat orally, the g-tube hole closes up naturally very quickly :)

There have been a few bumps in the road. Here's some tips to help you avoid them
G-Tube Problems and fixes:
1-Dehydration. When Seraph was learning to crawl, she was flat on her tummy a lot.  She was more mobile, so she gained muscle and lost an appropriate amount of weight.  Result: the g-tube was too big.  It leaked while she was sleeping on her tummy.  She lost all her fluids all night long.  In the dark, I just didn't notice the crib sheets were wet.  It cost us a trip to the ICU to get her re-hydrated.

Prevention: Check g-tube size.  It only works if it's snug against the underside of her skin.  If it's snug with 4 gauze pads, that's OK.  If you need more than 4 gauze pads, it's too loose. You can GENTLY pull up on the g-tube to see how far it comes up.  (You'll notice when you're cleaning the site, anyway.)

IF it's too loose, you need to get a new size.  If you can't (like there's a wait-time for how soon your insurance will cover it, or while you're waiting for delivery)....instead of gauze, you can use 2 pieces of toilet paper or ½ a piece of a tissue, rolled up like a cigarette, and then wrapped around the tube.  The idea is to lift the tube enough so it's right next to the under side of her skin even when she's on her tummy.  (don't pop it out)  Wrap the rolled tissue around several times and then tape it down. The kleenex/tissue won't get wet because the site won't leak.

ALSO:  ask your doctor if you can replace spilt feeds with an equal amount of Pedialyte.  This will prevent dehydration and keep your baby out of the hospital. (Pedialyte has powder mixes now, too.)

2-Granulation tissue--raised, sometimes painful, red tissue which can develop at the hole in the skin.  Granulation tissue can bleed and promote leakage of stomach contents through the stoma onto the surrounding skin.

fix/prevention:  Mix 20ml water with 2 drops Eucalyptus Oil.  Use a cotton ball to clean the site with this Eucalyptus-solution every time you clean it.  You can use this instead of soap because it's a natural disinfectant and antiseptic.  The skin will heal, the site will work better.

Write "G-TUBE ONLY" on a tube of your favorite diaper cream.  Use it only for the skin around the gtube.  This protects the skin if some of the stomach acid leaks.


I know it sounds crazy, but it's really so much easier than before.  Plus, she's happier and more mobile.

So if you're in that "should we really get a g-tube" boat, worry less and just go for it :)