Photos and Video Clips

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A healthy 4 day old baby, plenty of body fat.
The "concerned" look is typical of reflux babies.

By 2 mos. old she had lost body fat and
was in constant pain.

NG tube placement, 3 mos. old in hospital
11 pounds, 9 oz and losing weight every day until NG tube was placed
Head had also stopped growing.
The only place she had fat was her cheeks.

4 mos. old
Putting on weight! Obviously the tube was the right decision.

Testing out our first feeding pump

Testing the second "portable" feeding pump.
Portable maybe to an 8-year old!

6 mos. old, capturing a true smile!
Dx with sensory issues.
Very afraid of strangers and places outside of our home.
Did not bring toys to mouth.
Hands did not cross midline.
Gagged if presented with food.
Mild developmental delays due to sensory issues.

She was sick here, but it makes a cute photo.

Typical arched back during the feeding of a reflux baby.
(This photo was taken at 6 mos. This was her last week feeding by mouth for several months.)

Sandifer's Syndrome.
The baby attempts to elongate the esophagus by throwing the head back.
This is during a reflux episode. She did this 20 times in 2 minutes.

Sandifer's syndrome is the association of gastro-oesophageal reflux disease with spastic torticollis and dystonic body movements. Nodding and rotation of the head, neck extension, gurgling sounds, writhing movements of the limbs, and severe hypotonia have been reported.It is hypothesised that such positionings provide relief from discomfort caused by acid reflux
http://jnnp.bmjjournals.com/cgi/content/full/66/6/805

Video Clips

Here are all of the video clips in RealPlayer format
I made these for Nitara's doctors and therapists
to show how bad it really was.
The files a very small and poor quality so they would fit on this website.

Sandifer's Syndrome
Rocking her to sleep, she started to have reflux episodes
and was trying to get rid of the acid burning in her throat

Feeding with arching near the end
Two issues here: one is her stomach was not emptying
at a normal rate so she wasn't hungry to begin with. It was 10 AM
and she had only had 4 oz so far that day (woke up at 6)
and most of it was through her tube. I was desperate to try to get her
to eat more and get the tube out. As the feeding progressed she started to arch her back
and reject the bottle. She could go all day without eating if I let her,
and eventually that's just what she did. She did not feed again by mouth
for several months except brief windows of time,
and very small amounts as part of feeding therapy.

Gagging after a taste of solid food
Typical of an oral aversion/sensory issues and reflux.
The same gag reflex that helps protect her from aspirating vomit into her lungs
became so finely developed that it prevented her from eating.
She showed a clear sign that she knew what it was by sucking on her hand
when I asked if she wanted lunch.
I put the spoon within her reach and she bent forward and took
the food off the spoon herself. But she just couldn't' handle it.

Spit up 2 hours after eating
Showing signs of slow stomach emptying.

Projectile vomit 10 minutes after eating,
with Sandifer's Syndrome afterwards
I didn't know what was going on with the "arching behavior" but later learned
it was another form of Sandifer's Syndrome.
The vomiting was about 10 minutes after a feeding of 4 oz through her tube.
I had put her in the seat to settle her and hopefully prevent vomiting.
It took 30 minutes to feed her to try to be gentle on her stomach,
and less than 30 seconds to vomit most of it back up again.
Such was the story of her life back then.

7 mos. old, pre-op to get stomach (G) tube.
She's smiling because she's free from the NG tube.

Post-op, high on morphine!

8 mos. old

Feeding time!

(the blue part and tube detach after a feeding and just leaves the "button.")

8 mos. old and on a slow drip all night

This represents two days worth of clothing changes,
just to demonstrate how much she vomited on a daily basis.

This was during a period when she was really, really sick.
She struggled with chronic colds, ear infections, croup, and GI bugs
for months. We had to feed her continously by slow drip.

1st Birthday!!
Weight: 50th percentile
Height: 75th percentile

14 months old, wearing her portable pump made just for active children!

14 mos. old

17 months old and starting to enoy food again!!
She spits out the solids but really enjoys the broth.
She will eat food about 3 out of 7 days.
It's not much, but it's a start.

This is the smile I've been waiting for!
She's enjoying it!

22 months old, eating an apple (or trying to)
Weight: 25-50th
Height: 50th
Head: 50th (up from -10th as an infant!!)
Eating 50% of calories by mouth!

 
23 months
Now that we know about her food alleriges
(including nuts and dairy) I cringe when I see these photos.

"Abi, show Nitara how to take a big bite. Look at that beautiful bite!!"
33 months old

After being fed Pediasure.
Approx 30 mos old.

Never underestimate the power of peer pressure!
Nitara didn't want this ice cream when I offered it. Then I gave one to her big sister
and suddenly she wanted it very much. She grabbed my ice cream out of my hand
and refused to give it back. After a tentative taste, she decided she liked it.
My older daughter has been instramental in getting Nitara to try new foods.
I don't know what I'd do without her help.

Nitara at 3 years old!
She was sick this day so she looks a little tired,
but she always has a smile for the camera.
No more food for awhile-- gotta heal her gut
with elemental formula and see what the plan is after that.
At least she can still have shaved ice . . .

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