So NOW they finally take me seriously...stays #18 and 19

So I haven't blogged for a while.

Things have been...busy...

So let me catch everyone up on the past month.

On June 30th we were finally approved by Lily's Dr's to fly so we flew up to Utah.

Shaun's sweet Grandma was dying and she wanted to meet Lily before she died.

So We jumped on a plane and made the short hour long flight to SLC.

Lily did great on the plane, and I was very excited about it.

We drove straight to Grandmas so we could see everyone.

And it happened again.

 

She stopped breathing.

 

Turned blue and passed out in my arms.

 

Shaun took her laid her on a bed and started CPR.

But the rescue breaths couldn't get passed her throat.

Something seemed to be blocking her airway.

So he did some chest compressions 

Which did the trick. 

She started breathing and woke up.

She cried while I just cried and held her.

(I am so glad Shaun had JUST renewed his CPR certification the week before)

We called the Drs back in Phoenix and they decided it was probably just an isolated incident

due to the change in pressure and altitude from the flight.

And once she stopped crying she was fine.

(I must admit, I started to second guess myself and wonder

if this was just a "breath holding spell" and not laryngospasms despite the fact that her airway seemed to be blocked when Shaun was giving CPR...

but more on that a bit later)

We had a nice visit and it was GREAT to get to see family.

Although it was heartbreaking to see Grandma dying, 

We were so glad Lily got to meet her, 

and everyone else she hadn't had a chance to meet yet!

On the 4th of July we went to a park for a BBQ

and Lily had her first taste of playing in the sprinklers.

The next day We went to a birthday party for Lily's adorable cousin.

At this party her diarrhea became much much much worse.

In the next 28 hours she had more than 20 diapers.

She was hurting. 

We had to take her to the ER.

Luckily there is a Children's hospital in SLC.

Most typical hospitals aren't equipped to deal with 

Lily's "complex medical nature" even those with pediatric wings

And so we were very fortunate to be near a children's hospital 

where they had the tools and knowledge to be able to accommodate

to her needs

(IE: the pediatric sized port, and g-tube)

We got to the ER and she was dehydrated

( No surprise there, who wouldn't be after diarrhea like she had?)

But she was also significantly anemic, 

and her blood sugar was 50,

which is low but not horribly low.

An ideal blood sugar for her would be between 80-110.

(remember that for later)

So they admitted her.

Primary Children's Medical Center is a great facility.

Even though it is TONS smaller than PCH,

I almost liked it better.

The Doctors were very respectful and it was nice to

get some fresh eyes to look at her and find some things we had been missing

(like the anemia, and possibly the blood sugar)

We were there for only 3 days.

Just long enough to get her stable enough and filled up with fluids

 for us to make the drive back to Phoenix.

We had to drive back because they said Lily shouldn't fly again because she had stopped breathing

just hours after getting off the plane.

On the way back to Phoenix

we stayed the night at Shaun's old friends house in Saint George.

That night Lily started holding her tummy and saying ow

So I vented her like I always do when she does that

and I got this out of her tummy

yup that's blood mixed with her formula

And this picture only shows part of it.

There was more all along the tubing and I had to fill 2 syringes because there was so much just sitting in her stomach.

All in all, I probably vented almost 4 ounces out of her tummy all mixed with blood.

The good news was after we talked to the Dr's they thought it was safe enough to bring her to Phoenix the next day and get checked out.

So that's what we did. 

We drove the rest of the way the next morning and Lily did great!

 And even better I didn't see anymore blood all the way home!

 

The Dr's back at PCH didn't seem to concerned when they saw her and they ended up sending us home

without having to admit us.

 

About a week later I vented blood from her stomach again.

I called the Dr, who called another Dr, 

who then called me and said they wanted to admit her for a BUNCH of testing.

I must admit, I was in a Circle K holding Lily when they called me.

I had just left the funeral of an old dear friend so I was already emotional,

But I totally embarrassed myself by bursting into tears in the middle of the store.

I just am tired of having 

SO MANY HOSPITAL STAYS.

And I hate that this is so hard on my sweet little Lily.

We got admitted around 4 on a wed, which meant nothing would really happen until the

next day except for xrays and some blood work.

Thursday also brought more sitting and waiting.

Friday morning we were scheduled for three different scopes and 

ANOTHER EEG.

Lily had been acting odd all morning on Friday but during the EEG she really started to scare me.

She was pale, and couldn't even sit up on her own, I had to hold her up.

Her eyes kinda glazed over and she stopped responding to my voice.

Here eyes were open but it was like she wasn't there.

 

I told the lady I thought something was wrong, but she said she was  just tired.

I then told another person that Lily was acting weird and was really scaring me

and they ignored me as well.

It wasn't until we got back to our room,

and her AWESOME nurse came in that someone listened to me

The nurse immediately took her blood sugar and she was 21!!

She called the Dr's and started giving her some emergency meds.

They were saying they didn;t know how she was still consious,

that she could slip into a coma or a seizure at any moment.

 

she had only been given 10% of the recommended dose of medicine

when they checked her blood sugar again to make sure it was rising...

It had jumped up to 385!!!

So they brought in another specialist.

Endocrinologists.

The regular Doctors also came in and sat down with me and told me that they were 

sorry I wasn't listened to before and they have it in my chart that

I am to be listened to, that I (as her mother) am good at reading the subtle signs of distress 

and that I will be taken seriously from now on!

 

BOO-YAH!!!

Anyways,

They now had to do a bunch of tests to figure out her new blood sugar issue before we could even think of going home,

but in order to do the tests her blood sugar had to drop again.

So We had to take her off her feeds and check her blood sugar every 1/2 hour until it dropped.

After a while she became dehydrated and stopped bleeding as much so they had to poke her 2-3 times every 1/2 hour.

By the next morning she had had 35 pokes throughout the night 

and her poor feet were stained in blood.

I HATED allowing them to do it, but we had to know how to treat the blood sugar issue

before we could go home.

Blood sugar issues aren't something to mess with.

Then because of the blood sugar issues we had to postpone the scopes that she had scheduled

until the following Monday.

 

She had three scopes planned.

An EGD(stomach scope with biopsies),

a sigmoidoscopy (rectum scope with biopsies),

and a bronchoscopy (lung and airway scope with biopsies).

 

So apparently during the procedure

(after she was asleep but before they had begun anything else)

She stopped breathing again.

Because they saw it they confirmed it was a laryngospasm.

The anesthesiologist left claw marks on her chin from where he had to

hold the oxygen mask on so tight and FORCE her airway open.

He said while it does happen while people are under anesthesia,

It was the quickest one he had seen,

They now have NO doubt that these events she has been having 

ARE LARYNGOSPASMS.

And I don't have to second guess myself either.

They said her larynx is incredibly touchy and it just likes to spasm shut at the slightest irritation.

They then proceeded with the scope and found out that she had

"large amounts of frothy liquid" all throughout her airway and into her lungs as well.

The tests on this "frothy liquid" are still pending, however they believe it is stomach acids

and that she is refluxing past the fundo

(which isn't supposed to be able to happen)

Anyway, she has a lot of liquid in areas it shouldn't be and that's a big concern.

 Then after we got her safely back in my arms and back into the room last night, she spiked a fever

then her heart rate rose to the 200's and her oxygen kept dropping.

She finally stabilized after a few hours and has been stable ever since

So that's where we are now,

just sitting in the hospital 

waiting for test results so

they can know how to treat her and where to go from here.

I do know we will now be checking her blood sugar at home regularly,

and we get to have her back on our "good friend" the apnea monitor while she is sleeping.

(she was on an apnea monitor until she was 11 months old)

Tomorrow we should start getting some test results.

They believe that she was/is in a "metabolic crisis"

which is unfortunately a part of Mito,

But it often means the disease is progressing.

I hope it never happens again...

Honestly I hope she never ever ever has another symptom again.

I wish it would just STOP.

It hurts my heart that she is only 18 months old

and has had 19 hospital stays.

But she is a fighter.

She has such a happy spirit and she is so strong willed.

She LOVES life and it shows.

playing peek a boo from her princess castle hospital bed

happy girl minutes before going back for the scopes

You would never know she had stopped breathing on an operating table less than 24 hours before this was taken

 You would never know from just looking at her

that this little angel is fighting for her life.

She is so strong.

I admire and respect her strength, her spirit.

I LOVE HER!

 

 

 

TPN vs Neocate THE BATTLE

Working Lily off of TPN 

was much slower than last time.

Her Tummy just didn't want to accept food AT ALL.

The large yellow bag is TPN the white syringe is Lipids

In order to sustain life Lily needed to get to a rate

of 45ml and hour for 24 hours a day,

7 days a week into her G-tube.

(45ml is equal to 1 1/2oz.)

When she goes on TPN,

NOTHING goes into her G-tube.

So after she has had a few days with nothing in her tummy we 

try introducing food (her specialized formula) again.

We have to take it painstakingly slow.

AFTER being on TPN ONLY for 72 hours,

she started at 5ml/hour of formula (via G-tube) for 24 hours,

then every 24 hours we would up it 5ml.

Everytime we upped her formula rate we would lower the TPN a bit.

So to go from 0 to 45,

without any complications would take 

9 days...

And this is Lily we are talking about so

OF COURSE there were some complications.

Somewhere around 35ml

she started backing up stomach contents into her g-tube,

and then when I vented her some blood came up.

Luckily the blood only came up once so it looks like it was from the scope.

Then when we got her to 45,

She stopped tolerating completely.

Her stomach stopped emptying,

and her stomach became hard and extended again.

She was grunting and moaning in pain and her pupils were HUGE from pain.

So we had to back off a bit and turn the feed down.

Then she started having lock jaw.

About three times a day her jaw just locks open.

It doesn't seem to hurt her but

she does get frustrated with it and she has to physically

push it

( with my help)

 to get it to close.

Its only stuck like that for a few seconds

but when it does close there is a LOUD "Click"

The Doctors wanted me to take a picture of it

And I was fortunate enough to actually capture TWO. :)

We will be seeing an oral surgeon soon to see what (if anything) needs to be done

There is a possibility this will get worse over time, 

but hopefully its just a weird thing that will go away on its own as she grows...

OK, so back to her feeds.

When she stopped tolerating her feeds again,

The Dr came in to talk to me about 

Sending her home 

ON TPN.

I was NOT OK with that.

That would mean her port would be accessed 24/7

MAJORLY increasing the risk for infection.

An infection in the PORT 

IS BAD NEWS.

It would mean more trauma of dressing changes and

accessing and re-accessing the site.

It would mean home nurses.

Plus, I was against prolonged TPN use because of the damage it can do to the organs.

I just felt like sending her home on TPN was a bit drastic and 

while I am glad it is there when necessary

I don't think it was completely necessary to send her HOME on it YET.

So I told the Dr all this.

He was annoyed but agreed (after much persuasion) to consult with another Dr on it and also

give Lily a bit more time to tolerate her feeds so

we could get her on her needed rate of 45ml/hr.

Well later that day, she began tolerating much better,

and she did so well that we eventually were sent home

without TPN.

YAY!!!!

Yes her diarrhea is still there though...

She has had diarrhea for 70 days now

(with the exception of 1 or 2 days last month)

 I don't know what they are gonna do about it,

but we have many appointments over the next week so

hopefully we can get some more answers there.

So this hospital stay was just a bunch of

"waiting and seeing"

And I had to get very CREATIVE to keep Lily occupied.

 My friend Brandis brought Lily an awesome bag of little toys

and glow sticks and things to keep a toddler occupied while in the hospital.

She also brought us a red and white checkered plastic table cloth from the dollar store

to place on the ground to make a "sanitary" play place for lily on the hospital room floor.

 then I had Shaun bring two bags of beans to put into a bin for Lily to play with.

SHE LOVED them!

Here is the beautiful view from our room 

Phoenix

Helicopter???

this is our lovely prison...oops I mean Hospital room

PCH 6th floor

Happy girl

We had lots of visitors and watched ALOT

of Disney movies.

Tangled, Monsters INC, Finding Nemo, and Tinkerbell are her favorite

watching Tangled

We set up a bunch of pillows and toys in a wagon. And set the laptop so she could watch Backyardigans.

We also had the Joy of having Lily's Grandma-ish and Aunt-ish visit.

(Shaun's Aunt and cousin, but we call them Grandma-ish and Aunt-ish)

They had a trip planned for months and unfortunately we were in the hospital for almost

their whole visit.

We still had fun and Lily LOVES Her Grandma-ish!!! 

Lily is home now and very weak and clingy from spending 2 weeks in the hospital

but VERY VERY happy to be home.

An INCREDIBLE Father

So I realized that Shaun

is almost never mentioned on the blog.

In honor of Fathers day I would like to rectify that.

I cannot express what an AMAZING father (and husband) Shaun is,

He is the most LOVING man I have ever met.

He has a natural talent for loving others.

He is such an example of strength, forgiveness, and enduring to the end.

And he is 

THE BEST FATHER!

I always knew he would make a great Dad,

But to actually see him in action is incredible.

He is so engaged with everything Lily does.

He adores her and she adores him!

 

And he is willing to do anything to make her smile, 

or ease her fears.

During one of the hospital stays She thought he was so funny!

 

 

 He has never shied away from changing diapers or cleaning up puke.

 He is tirelessly striving to do all he can for Lily AND for me.

I am amazed by him.

I dont tell him enough how lucky I am.

And I still can't get over how incredible it is that not only

does he know how to take care of all of Lily's special needs 

just as good as I do

(which can be rare in Fathers)

But his CHOSEN line of work

is as a Caregiver for Disabled Adults.

He spends every minute of everyday

either caring for his clients, or for Lily and Me.

And HE LOVES IT!!!!

He is there through the good times...

During a hospital stay she loves for her Daddy to read to her

and the hard times...

Hotel P.C.H.

So last Friday Lily was admitted to the hospital again.

This is stay #17

We spend so much time here it feels

"normal" to be in the hospital.

 

Lily has a reputation as the "adorable sassy one",

And usually the first thing a new doctor says is

"OH, I have heard ALL about you Lily!"

And they proceed to tell  us about some cute story someone told them about

from one of our past visits.

 

I remember the first time we were transferred to PCH.

This place felt SOOOO BIG!

I remember thinking 

"how can there be this many sick kids in one city at one time???"

 

PCH doesn't seem so big now. 

 

Its funny how something so large and overwhelming

can become so regular and unimpressive.

Not that I am not SOOOO grateful it exists

and that we have access to it.

PCH is a HUGE blessing in our lives!

So, the reason we are back here again is:

Her diarrhea actually got even worse.

And she stopped tolerating ANYTHING in her stomach at all.

 She was in such pain that she just screamed and screamed.

When she would actually fall asleep she was breathing fast and 

whimpering the whole time.

AND  her stomach stopped digesting and emptying properly.

So, back to the hospital and back on TPN.

We started TPN on Saturday and they did more stool studies.

Of course the studies came back positive for C. Diff

But I informed the nurse it was my belief (and the Infectious disease Dr's belief) that

it was a false positive.

The Dr didn't agree and came to "convince" me that Lily needed

yet another round of Vancomyacin.

I told him it could wait until the scope (the next morning) because I did not think she had C. Diff.

And giving antibiotics unnecessarily is a bad idea and often does more harm than good.

He didn't like that, but he had no choice because I am the Mom and

I can refuse treatment.

 

They did the scope and took some stool from

inside the colon and took a bunch of tissue biopsies.

Everything came back normal!!!

which meant no C. Diff!!!!

I was so happy for about 15 minutes that

I had made the right choice in refusing the Vanco again.

I was proud of myself for saying "NO" right to a Dr's face.

 

But as the pride faded I realized...

 

this meant we had NO IDEA why she was having this diarrhea

and why she wasn't tolerating feeds.

 

She did have a UTI however, 

but that was secondary to everything else and a few rounds of 

yet another antibiotic cleared that right up.

 

So we added two new medications to try to see if that helps the diarrhea.

We are also slowly weaning off TPN as we are verrrrrry slowly putting her back on formula.

She isn't tolerating it very well though and every time they raise the rate on her feeding pump,

She becomes more agitated and fussy

And her tummy gets slightly more tender and more extended,

And the diarrhea worsens.

She had an ultrasound of her kidneys today just to make sure

that the UTI hadn't reached them and it was normal 

so that's good.

At this point its feeling like a guessing game.

One Dr said she may just have to "live with the diarrhea, and rashes."

Yeah... I am not ready to accept that.

This isn't your average lose diaper and rash.

This is watery, putrid stuff

that comes so violently and in such huge amounts that it fills the diaper and 

then shoots up her back sometimes reaching her hair...

If I hadn't seen it happen I wouldn't believe it.

And Its not just once or twice a day(unless shes on TPN of course)

If she is on her formula it is 10-12 times a day.

No, I do not believe I can just accept that there is nothing to be done...

 I know of a few things we haven't tried yet

and I'm not even a Dr...

But, I will not quit until we have exhausted every possibility.

 

That's part of the problem with the health care system.

The Doctors only hear reports or see test results.

They cant be there to witness everything like the nurses can.

So when the Dr hears about

"severe diarrhea, and a child in pain"

they don't get a clear picture of how it actually is.

And I feel like they are inclined to believe the parent is exaggerating.

Hearing is very different from seeing.

 

Any of the nurses that have seen the diapers,

 helped clean up the blow outs,

changed her sheets multiple times a day,

seen her screaming, 

watched her skin get worse and worse as the diarrhea returns as she is weaned off TPN...

Any of the nurses that have been there to actually witness it agree

 that it is severe and we CANNOT just give up.

But nurses only have so much sway with Dr's.

Luckily, I learned early in Lily's life

how to be an advocate for her 

and I surely wont stop now.

A 3 day stay turned into 10....

So what was supposed to be a short 3 day stay turned into 10 days.

She was admitted for TOTAL gut rest meaning they were going do TPN.

 So we got there and OF COURSE they didn't have the TPN ready yet

So we waited and got comfortable in our room for about ten hours

Until the TPN was ready.

She LOVES to play with foam tape to pass the time...

And what kid doesn't LOVE stickers?

 

They did a bunch of blood work and stool studies and

She tested positive for C. Diff.

 

"Clostridium difficile (klos-TRID-e-uhm dif-uh-SEEL), 

often called C. difficile or C. diff, is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon."-MayoClinic.com

The problem was she was ALREADY on the medicine

most commonly used to treat it (Flagyl) and was on her THIRD cycle of that med.

The doctors started her on Flagyl a FOURTH time.

They also sent in an Infectious Disease Dr. (ID)

After speaking with her ID, GI, and Attending

They all came to the conclusion

(after I suggested it)

That since we had already tried  Flagyl with little to no effect

they wanted to stop the Flagyl and switch to 

a much more potent antibiotic

Vancomyacin.

But an odd thing happened.

As soon as she went on TPN,

Her diarrhea stopped completely.

Now, if it was C. Diff it wouldn't have just stopped like that.

The ID docs AND GI BOTH agree it was probably a false positive.

But just in case they wanted us to finish out the 10 day antibiotic.

From there it was just a LOT of waiting.

She was on COMPLETE TPN for 3 days

Then 1/2 strength formula and half TPN for 24 hours

Then 3/4 strength formula and partial TPN for almost 36 hours,

Then they boosted her up to Normal formula at the slowest rate possible and weaned her off TPN.

As soon as they started her back onto the 3/4 strength formula the diarrhea came back.

It wasn't as bad, but bad enough.

We also found out she had lost almost 2 lbs.

She had been 22lbs 14oz

and was now 21lbs .

They wouldn't let us leave until she gained weight.

Oh and somewhere during the stay she developed a G tube infection.

Which meant 3 rounds of ANOTHER antibiotic.

I took this picture so I could remember how "fun"

it was to have a VERY MOBILE toddler attached to 

so many cords.

Now when she was younger there were times when she was attached to

just as many if not more.

And it was annoying.

But she moves SOOOO MUCH now.

There are seven or eight cords/lines in this picture.

I must admit I am so so glad we only have ONE at home now ;)

Oh and they also had her attached to TWO different IV poles.

It was a HUGE ordeal just to walk across the room.

I have never been more grateful for our laptop and Netflix than I was then!

She typically sleeps like this

Usually only if she is SUPER sick does she sleep on her back.
Unfortunately when she is all scrunched up the nurses think

 they have to turn her over to give her her meds.

When they do She wakes up.

When she wakes up she takes 2-3 hours to go back to sleep. 

Then she sleeps for an hour and its time for them to give meds again...

So after 5 nights in a row of this she slept a whole night like this

Sorry Its so blurry I didn't dare take another one for fear of waking her

For the most part we just tried to keep Lily entertained.

which was a bit of a challenge because we weren't allowed to leave the room.

 We made diaper hats...

  and tutu Lions...

 We set up a fun toy area in her crib 

and set up the laptop so she could watch her shows and Mommy could

take an HGTV break ;)

 

Oh, and we learned to fly by watching

The land before time...

When we finally did get to go home they sent her home on a 24/7 continuous drip.

That means she is ALWAYS attached to her feeding pump.

AND it means NOTHING by mouth.

I am sad that she no longer is able to have anything by mouth.

Not even her formula...

It is so hard to have her asking for food and trying to sneak food

when we can't let her have any.

If she sees us eating she opens her mouth wide and signs "Please"

it breaks my heart.

                                                   Hopefully this will only be temporary.

But this means we got a new pump!!!

The previous pump was temperamental and heavy and bulky.

The new pump is small and works upside down or on its side

and it comes with a backpack so she is completely

independently mobile! 

 

Here she is dancing to Pandora's "toddler radio" wearing her new pump.

(once again sorry it is sideways my phones camera is old and doesn't let me switch it :/ )

Hospital stay #16 TPN

I am sad.

Very sad.

I try very hard to count our blessings and

look on the bright side,

but sometimes I just have to feel sad.

Tonight I am allowing the tears to fall.

Call it weak if you may,

But I think it is appropriate and 

actually healthy for me to feel

sorrow occasionally given the circumstances.

Yes I am fully aware that things could be 

Much much much  worse.

I tell myself that daily.

But we all have our own individual trials

And for me,tonight, this one is difficult.

That does not mean I am going to wallow for days.

Tomorrow morning I will get up, 

put on my brave face and smile until the smile becomes genuine.

But tonight I have to get all this out

or I cannot be the Mommy and wife that

My loves deserve.

And I wont be able to be strong

for the days ahead.

I am sad because

Once again Lily is going into the hospital.

This is her 

16th admittance!

Tomorrow morning they are admitting her

for at least 3 days.

They are giving her complete Gut rest,

which means no food or liquid into her stomach or bowels

AT ALL.

In order to accomplish this they will be putting her on TPN

" Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formula that contain nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals. It is called total parenteral nutrition (TPN) or total nutrient admixture (TNA) when no food is given by other routes.

TPN is an artificial method of feeding, fully by-passing the GI tract. This unnatural way of feeding the body is far from perfect and comes with several significant complications"-Wikipedia

As you know from my last few posts Lily has been having severe diarrhea,

And has been acting odd.

She is increasingly fussy and clingy.

 She is having a hard time standing up straight and 

seems to have severe discomfort in her tummy especially her g tube area.

Oh, and I think she has lost weight.

She was completely into 18 mo size shorts

but they are falling off her and she is back into shorts

and pants she had previously outgrown, and her ribs are poking out again.

Now it is possible that she just grew in height therefore stretching

her out a bit,

But she doesn't seem much taller...

We have already tried partial gut rest 3 times since the Fundo.

(just pedialite for 24 hours, then half strength formula for 24 hours)  

The idea of a gut rest is to give the stomach and bowels time to 

"rest" and recharge so when food enters them again they can work properly.

Its the same idea as when a cell phone is acting weird,

 so you shut it off and turn it back on again.

Well that's the idea I guess 

But there is a problem,

It works for a few days but then it just keeps coming back.

And of course her RASH!

It is STILL THERE

and getting much worse now.

Now instead of a nice big rash she just looks raw.

This morning when I was trying to change her diaper

She was in such pain she was screaming

"Ow OW! Why Mommy Why why why why??"

I could only cry and tell her I was sorry and was trying to

figure out how to help her.

They  will also be doing lots of blood work and stool studies of  course.

 Now, I knew the moment I heard the Mito test results on the phone, those many months ago,

that our life would be FULL of hospital stays, Dr visits, therapy's,

 and one new symptom after another.

But to actually live it...

To have it actually happen and keep happening...

I don't really have words for it.

I feel like I am constantly holding my breath for the next hospital stay.

For the next "symptom"

and the knowledge that it is not going to get better anytime soon

is always staring me in the face.

 

This is Life with Lily.

However painful it is,

No matter how many tears I shed.

I am made better just by knowing her.

She is INCREDIBLE

She is like a shooting star

lighting up my whole sky.

I marvel at her strength, beauty and intelligence.

And I am so grateful and HONORED

that The Lord trusted us

to be her parents.

I am forever changed because I know her.

Adventures in diaperland and a new best friend!

Lily Update!!

**Notice: This post may contain TMI :)

She is recovering very well from surgery.

However, She has had some major bowel issues since the day after surgery.

And her rash is still there...

She is filling 10-12 diapers a day with diarrhea,

We can't even tell if she is peeing...

Most mornings she has been having blow outs

One Lovely morning I slept in to 9 am!!

I thought she was sleeping in too...

Nope,

She was happily finger-painting herself and her crib with the contents from her diaper.

I was horrified but

My little poo smeared munchkin was soo proud of herself

She was all giggles and smiles.

 Apparently, as I was scrubbing and disinfecting the stinky hand prints

off of her crib I was saying "Oh sick, sick this is so sick"

because Lily started walking in circles

exclaiming in her sweet little cherub voice

"Oh sick, sick sick!!" (giggle) "Sick, sick sick"

while she was trying to take her temperature with our forehead thermometer!

Lol guess I better watch what I say...

Well her diarrhea was not getting better 

She was already on the medicines that are supposed to help,

and they weren't helping

so

We had to put her on gut rest for the third time since the surgery.

Gut rest is when we stop all food and put her on a slow drip of pedialite for 24 hours,

followed by 1/2 strength formula for 24 hours.

(always per Dr's orders of course)

 As soon as we stop the food (every-time) her bowel issues stop,

which gives her a much needed rest 

and a chance to restore electrolytes,

But, its miserable for her and within hours she becomes weak and shaky

 and can no longer even stand. 

On those days we cuddle all day and I am VERY grateful for netflix

We watch all of Lily's favorites

Pocoyo, Wonder Pets, Eebee Baby, etc

Lily sees it as a real treat because

 watching more than 30 minutes of TV is reserved for sick days, IVIG, and hospital stays.

I tried to take her outside

and she enjoys the sunshine and change of scene,

But all she can do is sit :(

and pretty soon she wanted back inside.

Her strength returns within a day or so after getting her back to 

her normal foods.

But so does her diarrhea.

Its not as bad as it was though so maybe it wont get that bad again.

Other than that Lily is doing very well!

(couldn't help putting this pic in here, random yes, but oh so cute!)

And we have a new best friend!!!

The WEIGHTED BLANKET!!!

Thanks to my AMAZING friend Brandis

(You can read about her daughters feeding tube adventures here)

She made this blanket for her daughter Raya, 

but she didn't like it.

So they brought it for Lily to try and

IT IS MAGIC!!!!

It has saved our sanity!!!

Lily now goes to bed at 7:30 every-night and is asleep within minutes!!!

I am no longer desperately trying for Hours to put her to bed!!

I have time to clean!!!

I have time to read!!!

I have time to BLOG!!!

I have time to watch a movie that ISN'T ANIMATED!!!!!!!!! 

AND that's not all folks!!!!

SHE TAKES NAPS!!!!!!!!!

EVERYDAY!!!!!

BUT wait there's more...

We have learned that if we bring the blanket with us everywhere 

It significantly reduces/prevents

meltdowns.

So it can be seen on her lap at the grocery store

or draped over her at church,

or placed strategically over her legs at doctors appointments or therapy.

I just can not express how this has changed our lives.

I am a much happier, more rested mommy,

Lily seems much happier,

and Shaun and I actually get to have time together after she has gone to bed!

Who knew a specially made 3lb blanket could make such a HUGE difference.

Since I am talking about things that make life with a medically complex child easier...

We also got some awesome new button buddies

Button buddies wrap around the g-tube and 

significantly reduce the excess skin buildup, as well as they 

wick away moisture and help prevent infections.

Plus they make an otherwise frightening looking medical device rather cute. :)

I also like them because they are much cheaper than gauze and tape

as they are reusable.

We change them everyday and just throw them in the wash in a delicates bag.

And since this post is kind of a Hodge-podge of randomness

here is an awesome clip of Lily's speaking skills while she is sitting in a box.