Swallow Study #4

Ayla has received 4 Upper GI and Swallow Studies thus far and we think/hope this was her last one!

These studies are not healthy for the body as there is a high concentration of radiation used during the test. We've thought about the effects of the many x-rays Ayla has received throughout her short life (she's literally had so many we cannot recall the number). While she was in the NICU she received x-rays upwards of 2x or 3x per day depending on what was happening with her body at that time. Crazy, right?

The Study today was to determine if she is aspirating when she swallows and if she's protecting her airway.

The result: YES! 

This is outstanding news as it lifts from our minds the worry of aspiration when she gags and chokes. Ayla's OT/PT therapist attended the swallow study and was pleased with the results.

Here is something to consider: HOW does one get Ayla to drink & swallow when she doesn't know how?

Especially swallowing Barium (nasty, chalky stuff). You use a syringe and squirt it into the back of her throat so she is forced to swallow. Needless to say, Ayla was VERY UNHAPPY about that and it took an hour to get enough "swallows" to safely conclude she is swallowing properly.

The pictures speak for themselves:   

Sitting in the chair looking around, curious as to what is going on.....

Wow- she looks such like a Big Girl in that chair (sad)

The technicians getting everything prepped and ready.

 A sad, M-A-D little girl drooling out nasty barium.....

 This is the mad, upset Ayla. Notice her glasses are missing: she throws them onto the floor when she is upset. I think she is trying to scream, "Get me OUT of this chair and STOP touching me!!!"

Picture of the x-ray and table of "goodies" used in attempt to get Ayla to 'swallow'. There was pudding, baby food, crackers, juice and water all mixed with Barium to try and disguise the taste. In the end: the technician used a syringe as Ayla refused to let anything into her mouth (surprise, surprise...)

The video below is what the swallow study looks like during process- interesting to watch and you can see the dark liquid (Barium) traveling down her throat as she swallows.

Afterwards, we headed up to the NICU to visit and showcase Ayla's mad-walking-skills.

LOVE this picture because there was a time when we wondered if Ayla would ever be walking back into the NICU...

The doctors and nurses are always happy to see Ayla and watch her progression. It's also great to show parents who currently have children in the NICU that there is hope and light afterwards.

 Peanut loves elevators and when she spies one, grins and points excitedly to them. She wears the cutest, cheesiest grin during elevator rides! Caught a brief video below:

Tinkers-Bean is beginning a "copying" stage: last night she took the headband off my head and wanted to place it on her own. After placing it onto her head she was sooo proud of herself!

She also likes to help mommy 'dust' and 'clean' in which she will grab a wipe or towel and crawl/walk around wiping the floors, couches, walls, door knobs, ect. Such a cutie!!!

Zoom Zoom!

Ayla has a small stroller which has resided in her room for many months, untouched. It wasn't a toy she necessarily liked and would rarely push it around the house.

On Monday we decided to give it a 'test run' outside....curious to see how Ayla would respond to pushing it around the sidewalk.

We think the video below speaks for itself:

Tinkers-Bean had a great time zipping it around the cul de sac and sidewalk- she did excellent and carried on for almost 30 minutes! Several times she pushed so fast that her little legs couldn't keep up and she fell over and tripped. 

We loved watching her walk around with that silent-open-mouth-scream-excited-face and sweet "I'm-so-proud-of-myself" grin. You go, Ayla!  

 It's really quite amazing how quickly Ayla is beginning to progress- she is not a little baby anymore...but a growing toddler!

 ExCiTeD face!

Isn't she the cutest thing EVER? Seriously, how adorable are those glasses, long eyelashes, curly hair and little teeth?

  Ayla is healing well from surgery and almost back to her post-happy-mischief-making-self. Her favorite room in the house is the pantry as there is much to explore (and destroy). 

We have a swallow-study scheduled for Thursday and will be curious to discover how her throat is healing and changed.

Ayla's First Parade!

Saturday morning was the perfect recipe for a fun family activity and one of Ayla's first official "outings" of the summer:
a parade!

 Munkin is looking towards the noisy fire trucks and flashing lights

 Ryan and Ayla sitting on the curb watching the parade...such a sweet picture!

 Peanut was handed a sucker by one of the parade patrons which she decided to utilize as a dirt-digging tool!

 Halfway through the festivities Ayla wanted to walk around...and walk, and walk....and walk!

She was curious and not shy so it was a lesson in teaching Ayla, "Nope, that is NOT yours- no touching."

Many people commented on her adorable glasses and watched with interest (especially the children) as we fed and burped her throughout the parade.   

 Walking around clutching onto that sucker/dirt digger! It was a beautiful day and felt great to enjoy time together away from home as a family. As flu season concedes to summer we can begin introducing Ayla to various outside activities. 

In other news: Ayla enjoys her time in the stroller going for walks outside. She'll point to the door and to her stroller and look at us if to say, "Well, come on already- let's go!" 

When she spies the stroller she gets excited, claps her hands and squeals. 

 All bundled up ready for a walk!

 Munkin has a spray bottle which is used to encourage her to swallow and "drink".

Often times her shirt, pants and glasses will get soaked before she figures out how to spray directly into her mouth. It's quite entertaining to watch!

In regards to her drinking: the doctor cleared Ayla to resume oral therapies and Occupational Therapies. We have a Swallow Study scheduled for the 26th which will be helpful in determining how her throat is working.

Sleep Study: The Results

We finally received the detailed results of Ayla's sleep study which was conducted on April 9th (that study was quite the adventure!).

The results were conducive to what the doctor anticipated: Ayla has Central Sleep Apnea and Obstructive Sleep Apnea.

While waiting for the doctor, Ayla was saying "da-da" in the video below. If we ask her to say, "mom" she'll grin and say, "da-da" instead! Yes, she can say "mom" but chooses not. Silly-bean!    

Another one of Ayla's favorite activities below: Rocking!

And again, the "da-da" but no 'mom' yet!

What is Central Sleep Apnea? Why does Ayla have it?
A disorder in which your breathing repeatedly stops and starts during sleep due to lack of respiratory effort. Ayla had 4.2 events per hour in this category and woke up 16 times during the night (and you wonder why we complain about lack of sleep....). This is caused from her prior brain bleeds and is a neurological disorder. Central sleep apnea occurs when your brain doesn't send proper signals to the muscles that control your breathing. Ayla's sleep study also revealed that 27% of her sleep is disrupted by this.

What is Obstructive Sleep Apnea? Why does Ayla have it?
 Obstructive sleep apnea is a sleep disorder in which breathing repeatedly stops and starts during sleep. This occurs when your throat muscles intermittently relax and block your airway during sleep. The most noticeable sign of obstructive sleep apnea is snoring, which is why Ayla snores (note: babies & children should NOT snore). Ayla had 10.3 events per hour of Obstructive Sleep Apnea which accounted for 11% disruption in her sleep. This was caused from her infected and nasty tonsils and adenoids (which have now been removed).

So what does all this mean? Well, we know Ayla has never been a good sleeper and the doctors were concerned this could be affecting her growth and development if she isn't getting proper sleep. What is proper sleep? 

There are 3 stages of sleep: 
Stage 1: is light sleep where you drift in and out of sleep and can be awakened easily.
Stage 2: eye movement stops and brain waves become slower with only an occasional burst of rapid brain waves.
Stage 3: extremely slow brain waves called delta waves are interspersed with smaller, faster waves.
Stage 4 or REM:  referred to as deep sleep and is when growth hormones (among other important hormones) are secreted from the brain. In deep sleep, there is no eye movement or muscle activity. Infants normally spend almost 50% of their time in REM sleep (Ayla is only there 11% of the time).

Ayla spent only 11% of her sleep in the REM Stage (not good as this is your "growth" stage) and 47% of her sleep in Stage 2 (not good) and 41% of sleep time in Stage 3 (a little better) and 1%  of her sleep in Stage 1. Translation: She is not getting enough proper sleep.

So what is the solution? Part of it was removing her tonsils and adenoids to eliminate the Obstructive Sleep but as far as the Central Sleep Apnea....that is neurological. Blessedly, Ayla's Oxygen Saturation's only dipped to 87% during these episodes which isn't a danger level so she doesn't require oxygen during sleep.

Wow- what a report! Ayla is like jumping onto a fast-track to medical knowledge...she is a rather interesting puzzle and we learn much. The human body is such an amazing thing!

 Walking with Ryan to the doctors office- she insisted on holding hands and will not otherwise walk solo.

So sweet!

Walking to the car- all done!

Her wobbly 'Frankenstein' walk cracks us up!

Tinkers-Bean is such a blessing and we have much fun with her; she's getting to be a toddler and do cute little things. 

She can:

• Point to her nose, hair & eyes
• Clap her hands (when asked)
• Fold her arms (when asked)
• Give kisses! Open-mouth-slobbery-kisses
• Go get her 'diapeys' from the dresser drawer
• Turn off and on the light switches
• Say "da-da"
• Smiles more (but not speaking)
• Acts shy around people
• Place toy balls into her round container

~First Time: Walking Outside~

Ayla decided that she was going for a walk...outside!

We opened the front door and let her loose- though it was a windy day she did excellent teetering along the sidewalk!

Video below:

Step...step...stepping very slow....

 Getting excited and braver!

Many spills and tumbles but Ayla was quick to stand up and start again!

 A few days later we tried again as it was a nice evening for a walk.

 Going for a ride in the stroller! Munkin is looking so grown-up in her sun hat...

This child is B-U-S-Y.

Her official name is: "Ayla-Mess-Maker-Stephenson" as you can see from the picture below she is quite the curious whirlwind. There is no drawer or closet that is safe!

It's a joke around our house that we move from one mess to the other cleaning up after Ayla's non-stop evidence trails.

 There is also no such 'Child-Proof-Lid' she cannot twist off. On the carpet below is a lovely bright blueberry-flavor-colored Ibuprofen children's bottle which she happened to snag off the counter with her go-go-gadget-arms, pack into the living room and twist the cap off. This happened within minutes...she is quick!

  We think the bright blue compliments the light beige carpeting rather beautifully....and of course, it's in the center of the living room floor.

 The picture above is of Ayla playing in her crib in the morning: she was very quiet in her room until the tell-tale "beep, beeping" of her milk pump. Upon opening the door this is what was see: Peanut standing in her crib playing with the pump. She LOVES buttons. and you can clearly see that her milk tubing is wrapped several times around said pump...wonder how that happened??

 Helping dad bake cookies!

If you're sitting on the floor, Ayla will grab a book and plant herself in your lap so you can read to her.

Munkin enjoys books and will sit for long periods of time while you read- it's such fun and very cute!

Thankfully, she appears to be on the mend from her nasty sinus cold- just in time for a visit to the dentist on Wednesday! Good thing- girl seriously needs her teeth cleaned!

We have halted oral therapies until receiving clearance from the doctor that her throat is healed enough to begin again. After her check-up on Thursday we'll probably be cleared to begin oral therapy again. Ayla has been interested in taking sips of water from her spray bottle but hasn't yet wanted to try tasting or eating anything. 

Oh- and walking? She's been on a 2-day strike....crawling is much faster!

Bard Button Change- #6

There is something very strange about Blogger; it randomly deletes prior posts and had kicked me out of posting several times!
Anyway....
In 2 years Ayla has undergone 11 Feeding Tube Button changes.

Wednesday marked #11!

This is not normal: a Bard Button is *suppose* to last 1 -2 years but thanks to Ayla's wicked stomach acid, she cruises through them!

Munkin's Bard Button has been leaking during night feedings and as result, she awakes with a wet, sticky stomach smelling of vanilla PediaSure, soaked pajama's and bed. This is not good for her skin and can lead to infection and skin break-down. However, this Bard Button has faaar outlasted the others by many months. A record! 

 Waiting for the doctor to arrive.
Ayla charmed the nurses with her sweet smile and cuteness!

 Playing and waiting......

Removing the defective Bard Button..... 

...Ta-Da! New Button installed!  

Getting a milk snack to ensure the new button is placed correctly and functioning. 

No more leaks!  

The video below is the doctor placing the new Bard Button. Ayla is crying because:

#1 Doctors & Nurses are touching her, aka "The White Coat Syndrome"

#2 She's feeling weird and strange from the medication

#3 She's hungry, tired and has been waiting for several hours unable to crawl around and play properly

#4 It hurts!!  

Prior to this, Ayla is given Versed ("happy medicine"), Ibuprofen and the skin around her button site is numbed. However, it still obviously hurts and is not a pleasant process for Ayla. Her button site is tender and raw for several days afterwards.

In all fairness: her "white coat syndrome" is verified- she only visits doctors when something needs be done and she's old enough to now  realize that. Any suggestions?     

Post Surgery 2 weeks: Little Trooper

It's been 2 weeks today since Ayla's surgery and just when Munkin was beginning to get back to her cute-little-self...she caught a cold!

Of course, it couldn't be just a head-cold but a gag-inducing-retching-constant-runny-nose-sinus-plugging- misery-crying-lack-of-sleep cold. When Ayla does something she must do it the "Ayla-Way" which is full-board! 

Despite those issues she's still smiley and wreaking havoc with the drawers and cupboards.    

Let's get close and personal.....love those beautiful eyelashes!

 Snotty-nosed and plugged up but still playing!

Our 'mess-maker'...truth: that drawer was once neatly organized....

 Ayla likes to look outside and watch the squirrels in the backyard- she gets a kick out of licking and banging on the glass doors.

 She recently began walking on her knees- a new trick!

 This is her "I-am-not-feeling-good-get-that-camera-out-of-my-face" expression.....

 In the pantry!

She managed to unload most of the baskets before being caught red-handed. and yes, that is a glass jar full of powdered sugar she is about to slide onto the floor...caught just in time! We have attempted to teach her that certain drawers are "no, no" drawers but...the concept eludes.

 We've been teaching Ayla about her sister Zoey and when we ask her, "Where's Zoey?" she'll point to her pictures. The other day she bent over and kissed the picture- so sweet!



A few days ago Ayla went in for a wellness check-up:

Weight: 26 lbs (40%)

Height: 33 inches  (10%- little shrimp!)

and she has a small head...ha!

It's great to watch Ayla become more confident in her walking- she is getting brave and venturing more on her own without the aid of furniture.

 Walking like 'Frankenstein'....

Lots of spills and falling down! Peanut is pretty wobbly but she then crawls to the nearest furniture, stands herself up and starts again.
That's our determined girl!

It'll be awesome when Ayla is past her cold, constant gagging (yes- we are back to almost constant gagging again), retching, snottiness and healing from surgery. It must be very uncomfortable for Ayla when she gags and dry-heaves (think raw throat and stitches) because she cries, tries to curl up into a ball as she attempts to catch her breath and her little body shakes. So sad and there isn't much we can do but offer comfort and loves and wipe her eyes and nose afterwards. 
She's a trooper!


For Mother's Day Ayla surprised me with an upgraded digital camera and Ryan made a divine chocolate-cream-pie.
Spoiled!