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 

2 TABLESPOONS!!!

WOO-HOO!!

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...

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

NEVER

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

and SLEEP A LOT!

 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

JUST LAY THERE.

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!

TAKE THAT CRITICS!!

 

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

EVER HAD IN HER LIFE!!!

She crawled, talked, played with OTHER PEOPLE!!!

For ONE WHOLE DAY

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,

She MADE EYE CONTACT ,

AND LET PEOPLE TOUCH HER!

SHE ATE FOOD!!

 

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  

HYPER!!

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!

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!!!!

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.

Plus,

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. :)

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

LAST CHOICE.

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"

That IS NOT THE CASE!

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 

BIG YELLOW TUBE

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 :(

 ENTER HYPAFIX!!!

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...

FINALLY,

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...

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

SCREAMED

 

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.

Safely

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....