Monday, January 30, 2012

A little ASL with your broccoli?

So the GI and the dietitian cleared Lily for 
sweet potatoes, pears, and broccoli.
They must be organic or Beech Nut Brand,
They must be thickened to "double honey" consistency,
she can only have it on days when she shows no signs of 
coughing, excess drooling, sneezing, wheezing, or teething...
Saturn and Venus must be perfectly aligned with one of Jupiter's moons
And it MUST be snowing in Phoenix...
OK, well maybe not so much about the planets being aligned and it snowing in Phoenix...
but you get the point...
So the days she is allowed to eat food by mouth are few and far between.
She finally had a day when we felt it was safe to feed her.
So we made baby food broccoli and mixed it with sweet potatoes...
I had also been trying to teach her basic ASL (American Sign Language) for months.
just watch...

This was the first time she successfully did the sign for "more" and she kinda does the sign for 
"all gone"... which I took for "no more"
I have learned if I try and force once she turns her head I will end up cleaning up puke.
So I don't push it.
She successfully ate about 

But then about 5 minutes later
We hear signs of aspiration.
She started wheezing,
and noisy breathing
and it sounded like there's stuff in her lungs
and I just have to pray she will cough it all up and
wont get pneumonia...

Looks like this time she got it all up...
But we wont be able to try "food"
again for a few days,
especially since it looks like her cold is back now...

Friday, January 27, 2012

back to reality

time keeps ticking
it doesn't stop for anything or anyone.
It thrusts itself forward
carrying all of us with it.
It brings with it endings.
Endings of all kinds, to many different things.
Lily had an amazing birthday.
She was so healthy that I actually let myself believe
That maybe she was better...
Maybe it would be all sunny days from here.
But as cruel time passed and led us to the next few days after her birthday
I realized she wasn't "all better" after all.
She spent the next few days after her birthday
 sick and Exhausted!

She never and I mean
sleeps on her back unless she is REALLY sick
usually she sleeps like this
you cant see it but her bum is always up in the air while she sleeps...

The two days following her birthday she did 
almost nothing besides sit in my arms and suck her thumb

 I got NOTHING done,
but I enjoyed the cuddles a lot,
even though it made me sad to see her acting so 
sick and tired.
When I needed to get up and do something,
I would put her down and she would
Then the fevers started...
She kept spiking a fever, then her temp would drop below her normal
she was all over the place
so we finally had to take her to the ER
she is supposed to be admitted for 48 hours with every fever
but for the whole 4 hours we were there her temp was stable
so luckily they didn't admit her.
her white cell count was super high though
so they gave her iv antibiotics and we have some at home to keep her on for a few days.
And of course as soon as we got home her fever came back and has been steadily high all day
but since they were able to get the blood cultures they needed last night we wont have
to go back unless it gets super high or she develops
"new symptoms"
hah! whatever that means...
Today she is active
but has deep dark circles beneath her eyes
and she has the " about to get very sick look"
(that only a mother can see in their child)
I am just praying the antibiotics will work 
and she will be able to
nip whatever it is in the bud!

Lily is 1!!

My baby girl isn't so much of a baby anymore!
So on her birthday we woke her up by singing to her... You HAVE to watch the
WHOLE thing there is a "surprise" at the end of the video!

Ok does it sounds like she says it to you too?
Or are my ears just being super optimistic?

We decided to give her
her main present before the party...
she LOVED it!

She spent the day playing and being adorable!
Then it was time for her party!
Now, I received a lot of criticism for throwing
a 1 year old a party,
But making it through this past year was definitely something to celebrate!
So she got a party!
Yes, We are TOTALLY "those parents"
we wrote on our car about her birthday...
So the day of her birthday was the HEALTHIEST day she had
She crawled, talked, played with OTHER PEOPLE!!!
She acted and looked completely healthy!
The bags and dark circles under her eyes went away,
there was no hoarseness to her voice,
No swelling on her little body,
no fevers,
I cannot express enough gratitude to Our Heavenly Father
for giving her one day of being healthy!
She was so so so happy all day and so was I!

She received many many presents!
And LOVES ALL of them!
At the end of the party as people were leaving
She became  
I have never seen her have so much fun!
I would have cried out of joy if I had been able to stop laughing!
Thank you to my awesome friends Brandis and Rachel
for the amazing pictures!
and Thank you everyone who shared in her birthday celebration 
in body or just in spirit! :)
(The sign says I <3 a Tubie)
Happy 1st birthday to my sweet silly Lily!

Wednesday, January 18, 2012

Puppy Love

So our awesome friends brought Lily a
"pillow pet" style doggie
and it has been a source of joy and comfort ever since!
Kiss the doggy's nose
She loves it sooo much!!
it comforts her when she feels sick
for some reason she REALLY likes to bite it....
at least she's not biting me...

shes also very vocal about loving her puppy...

And then this next video is totally unrelated but I wanted people to see her have a
"good" day!
 This was at IVIG this morning
yesterday she had a hard time even crawling and then today...
well just watch...
She's AMAZING!!!!

Tuesday, January 17, 2012

Feeding Tube Part Three

By October Lily had developed complications from the NG tube.
She was gaining weight great however,
and was no longer FTT!
But She had laryngomalagia,
and the tube was making it worse
causing her to have episodes of not being able to breathe,
Her voice was non existent or hoarse all the time,
and she was getting nose bleeds.
the emotional trauma from me holding her down
and shoving a tube in her while
she screamed and cried
was taking a serious toll on her and me
and on her trust in me.
Plus we had a meeting with her SLP(speech language pathologist)
and with her GI, and with nutrition
and her dysphagia had gotten worse.
She HAD to have a feeding tube still for medical reasons
and also because she refused/didn't have the energy to drink more than 12 oz by mouth a day.
(she needs to get 32 oz in a 24 hour period 
to sustain herself.)

We also knew she needed a med port, and a muscle biopsy
so we thought we would do all three at once and reduce
the anesthesia exposure.
So the date was set.

It doesn't matter how 
"simple or routine" the surgery is
when your baby goes under for surgery its terrifying.
We arrived at the hospital at 8 am for a 11 o clock surgery
why they make you show up hours early to just sit in the waiting room 
and get more and more nervous is beyond me!
She was in a fantastic mood that morning and it broke my heart that she was gonna be in 
so much pain later that day.

The surgery started 2 hours late
cause they had to coordinate between 3 different specialties.

A jittery male nurse came in to take her back.
He took her out of my arms.
She screamed and reached for me as he carried her down the hall.
It LITERALLY took everything in me not to tackle him to the ground
grab her from his arms and flee the country.
They were gonna cut her.
They were gonna HURT her.
They were gonna put things in her.
I didn't like it at all.
Logically I knew she would be under for the procedure
and they would give her meds for the pain.
But I still wanted to "save her"

The waiting was hard. 
After it was over they came to get me and took me back to the recovery area
as soon as they opened the doors I heard this eerie scream/moan
I thought "wow whoever that is sounds bad".
they took me too her and I realized that noise was coming from her.
She was really out of it from the anesthesia and I could tell she was hurting.
once she was stable they took us to our room.

 she was really outta it all day
she wouldn't sleep
and for the most part didn't want me to touch her
The night of the surgery she spiked a fever. 
Her stats were all over the place.
The next few days were touch and go.
She finally stabilized enough to go home 8 days later.

 It wasn't that big of an adjustment to go from an NG to a g tube.
Its really a neat lil invention.
Its just a tube with a balloon.
this is what the g tube looks like with the balloon deflated.
The first time I saw it I thought to myself
"That's it?"
I expected it to be a bit more complicated

This is the g tube with the balloon inflated.
That balloon is all that keeps it inside her.

There were also a few more supplies We had to have now
Two more kinds of syringes

split 2x2 gauze

And the extension set
This is what plugs into her g tube and attaches to her feed bag.
Well that pretty much sums up the feeding tube chronicles. :)

Monday, January 16, 2012

Feeding tube PART TWO Ng tube adventures

So, a few things I left out of the last post.
I want to emphasize that going to a feeding tube was the
We, along with her doctors, tried everything first.
In order for a doctor (or at least the ones we met with) to even suggest putting a feeding tube in,
things have to have gotten to the point where it was
life or death.
Without the feeding tube Lily would have died. 
Without a doubt.

I also want to point out that 
IN NO WAY was the feeding tube
"the lazy way out"
I have heard many times 
it been said that tube feeding is for 
"Lazy Parents"
There is nothing easy about
tube feeding.
Except for being able to force a burp anytime at all :)

So on a different note...
when we first got the NG tube 
They put her on an elemental formula 
called Elecare.
Its super expensive 
Like 40 bucks a can!
but because she had a feeding tube
our insurance covers it. :)
They also put us on a continuous night feed.
this means for 10 hours every night she
is hooked up to her pump
and is fed.
It goes super slow
(about 2 ounces an hour)
but since she is sleeping
most of it stayed down and so as a result
she started gaining weight and
started progressing again!

So, the first time I put an NG tube in her 
I cried and cried.
I felt so mean, and it looked scary to me.
No one likes having a 
taped to their baby's face
broadcasting that 
"something was wrong".
But, Lily was very good at pulling it out
so I became very good at putting it back in.
Plus it literally saved her life
and I LOVE it for that!
  I definitely have a love/hate relationship with her feeding tubes.

I was surprised at the amount of supplies I had to have with me at all times though...
An Ng tube, sterile water,8ml  med syringe, and a 60cc "bolus syringe"

A stethoscope to "check placement" and make sure the tube is in her
stomach and NOT her lungs...

ky jelly for the tip of the ng tube to make it go down her nose easier,
Hypafix! My most favorite med tape in the world!!
plus surgical scissors to cut it with,
also paper tape to tape the end of the tube closed.
we later switched to waterproof HY tape but I don't have a pic of that...

Duoderm! We cut a thick piece of duoderm and put it on her cheek first to protect it
from taking tapes on and off all the time
One piece of duoderm usually lasted about 5-6 days 
even with getting wet!
the smaller piece is tegaderm.
its clear and pliable and super sticky but its one of the things she isn't allergic to and it 
came in handy when I was out of hypafix!
 It is also used on her IV port.

This is her Iv pole. I decorated it to match the "girlishness" of her room

You can see a close up of her feeding pump and bag here
and we would hang her apnea monitor on it while she was  sleeping as well!

 As many "tubie mommies" say 
taping an ng tube is an art more than it is a science
It takes lots of trial and error,
here's our taping progression
Day 2 of the ng tube, The hospital did this one and I thought it was a bit overkill...
Next I went to the waterproof hy tape, it was super gentle on the skin but it
looked weird to me because of the color
and it came of WAY to easily

Next, came the tegaderm trials,
It stayed on MUCH better than the hy tape
but it stayed on too well
and took skin with it when it was time to take it off :(

yeah so at first we taped the WHOLE tube down to her cheek
it helped train her to leave it alone and not pull it out...

Which she still did on an almost daily basis...
You can see the "guilty" look in her eyes her cause I caught her
pulling it out...
we got to the point where we just needed two small squares 
of hypafix
one right next to her nose, and one just next to her ear
 I felt like it "cleared her face up" a bit

This was her last day with an ng tube
So I took a
diaper pic so I could have a pic of her perfectly un-scarred skin.
She was going to have surgery in the morning

 I made her a tubie bear.
she LOVES it still!

To Be Continued...
Next up the reasons we HAD to go to a g tube, and the surgery...

Sunday, January 15, 2012

Feeding tube part 1

So I wanted to do a post about what led up to the feeding tube, 
the NG adventures, 
the decision to get a g tube,
and then g tube adventure.
This will probably be over a few different posts...
so this is Part One!

Lily had trouble eating from the moment she was born.
She had no suck or swallow.
I tried to breastfeed for 5 weeks
it wasn't enough so I supplemented with formula
but she was too weak.
she would just lay there
mouth hanging open and i would drip
her milk into her mouth
and massage her throat to force a swallow
that's how she fed for the first couple months.

Then when she finally started being able to swallow
and she had a suck (very weak, but it was there)
I thought things would get better.
But everything that went into her stomach came right back up.
She would occasionally have periods where she would go a few days or
a week even without throwing up,
But it always came back.
And she screamed.
for hours and hours and hours she just

and screamed...

and screamed....

and cried...
and then screamed some more...

and screamed...

Now I know it seems horrible of me to have all these pics of her crying,
but when that's basically all your baby does when she's awake
you HAVE to get pics sometime.
And YES I tried EVERYTHING to get her to stop crying
And it DID get overwhelming.
But EVERY TIME I got overwhelmed 
I laid her carefully down in her crib and walked out of the room
I had to get some distance for a moment so I could regroup and
be the mom she needed.
and when I was calm
about 5 mins later I would go and pick her back up. 

And I was exhausted!

 But I loved her more than I ever thought possible
And more and more everyday.
And we got through it.
with only a few more grey hairs to add to my head.

and then the crying got less and less.

She was down to only about 4 hours of straight screaming a night
and she had some happy time
But she was getting skinnier
And she started loosing weight.
She was 6lbs 8 oz when she was born
and at 4 months she only weighed 8 lbs 
the doctors were worried about brain damage from malnutrition.
So It was time for her first feeding tube

and things started to get better...
And she was happier!!

To Be Continued....