Tuesday, April 5, 2016

Surgery/procedure day- It doesnt get easier...

Today was the
 39th time
I have handed one of my precious babies over to
a team of specialists, doctors, nurses, techs, students and anesthesiologists
for a procedure under general anesthesia.

and let me let you in on a little secret:

It doesn't get any easier.

Now I'm not saying that I still fall to pieces
crying and blubbering like the first few times
that I handed my oldest child Lily over to the surgeons.
No it's not obvious to others not close to me that it's still this hard.
Like all parents of chronically ill children we develop a thick skin
and a really really good poker face.
I have gotten so used to the routine at our local children's hospital that it feels like a second home
( an odd uncomfortable home that's teetering somewhere between feeling like you are under house arrest and living in some strange super clean toy store)

I am so familiar with it that I can see, hear, taste, smell and feel it all anytime I close my eyes...

the cacophony of children's laughter and agonized cries of children in pain with
the equally agonized cries of worried and distraught parents,
the laughs of "frequent flyer" parents who have learned to laugh instead of cry,
the beeps, and chimes, and alarms
of all the pumps and machines and devices that keep our precious ones alive.
The happy banter of doctors and nurses who work so hard,
and have become outwardly immune to the suffering that surrounds them daily.
(And if you think that most of those doctors and nurses don't take their work home with them and worry about their patients, you are wrong)
The occasional soul stopping sound of a doctor's low urgent voice explaining to another physician what just went horrifically, nightmarishly wrong in the surgery that directly precedes your own childs.
The bright colors that try so hard to make a sterile, terrifying environment, child friendly.
The cold chill that runs down my spine when I hear a code called over the intercom 
and the immediate flashbacks of when codes have been called for my own child.
The smell of the chemical cleaners, and the antibacterial soap that makes me sick to my stomach every time I wash my hands. 
The way the air immediately dries out my throat and nose and lips
(and how I always forget my chapstick.)
The familiar ache that immediately rushes back to my hips and lower back
from those chairs that they expect parents to sit, and sometimes sleep, in for hours at a time.
The equally familiar tightness in my neck and shoulders from cradling a crying baby or child as they struggle with pain, fear, exhaustion, nausea, and confusion for seemingly endless hours.
The paperwork,
ohhhh all the tedious redundant paperwork,
to me all it looks like now is 
"if  your kid dies its not our fault
now sign here,
and here...
and here...

and here...."

I am familiar with it all,
with 39 procedures and/or surgeries under anesthesia
and an additional 
42 hospital admissions of usually a week or more each
plus countless appointments and Er visits
(between all 3 kids combined)
you would think that I got this,
that its not a big deal anymore.
And I play it off that way.
In fact I play it off so well that I have been accused of not caring,
 I've been accused
of being so jaded that it doesn't even phase me when my kid is having a procedure done...
But it destroys me



And yes I have become jaded to certain things,
Shots for example, 
I don't cry when my kids get their shots, 
not after what they've been through.
The thing that people 
understand unless they have experienced it with their own child/children is
we cannot dissolve into tears over every medical issue, all the time.
Not when this kinda thing goes on for weeks, months, or years.

Most of us,parents of chronically ill children, have already cried so many tears alone in the shower or into their pillow at night that there aren't many more tears to cry.
there is such a thing as all cried out.
Also, its really really difficult to make logical well thought out decisions
when you are crying so hard that you can't even see.
And the doctors only have so long,
 you have to be super aware, super present for those precious 5-10 minutes that you might get with that doctor/specialist/surgeon.
And then of course when mommy cries the baby or child cries, 
they are already scared and one sure fire way to send a child into panic mode is if mommy falls apart.

So for those reasons I developed a thick skin
and then at some point 
I also realised that this was my kids childhood and she wasnt gonna stop growing just because she was in the hospital all the time.
So I made the most of it
and I made a conscious effort to
Choose Joy
every single day
because I am a better mom when I choose Joy.

But the night before surgery day I barely sleep,
and alone in my room I fall to my knees and pour out my soul in a more desperate prayer
than my usual prayers.

and then when my kids are awake the day of surgery we are in happy mode
I am determined to make the most of every moment
underneath the smile is a  raging tempest of hurt and worry for my sweet child.
We bring favorite toys, I sing them their favorite songs
they get to wear their Pjs as clothes for the day!
(a very exciting thing in our house that's always met with cheers and applause).
I do my best to be as present in the moment as possible with my children.
I nod and "uh-huh" through the novel of paperwork.
I try not to think about what can go wrong.
and then when they come get us to take my baby back to put him or her under,
my wall starts to dissolve.
usually right about now a few traitor tears start escaping.

Its harder when its a bigger surgery like the trach, or something
and the nurse takes my baby out of my arms
and I have to let her go
and they walk away
the whole time my baby screaming 
"mommy mommy"
and I am
they won't let me go with.
they expect me to walk away and go sit in a waiting room with all the other parents.
but my feet wont move.
this nurse just took my child and is walking away with them
and I don't want to let them go and they don't want to go
and my baby is crying and screaming and reaching for me...

and all logic that tells me that its ok , that this surgury/procedure is necessary flees out of my head and all I can think in that moment is that that nurse, stranger,
 is gonna take my baby into a room full of
 doctors, nurses, techs, surgeons,anesthesiologists,
and they are gonna hurt my child,
they are gonna cut her 
 and make her bleed. 
when she wakes up she will be hurting

and I want to run after my baby and make her safe.
I want to grab my sobbing child out of that strangers arms 
and rip up the surgery consents that I signed
and run away and keep my child safe.
And in that moment I Hate that I am ALLOWING this to happen
how can i just stand here and let some random person take my baby down that long hall
that haunts my dreams
into a room where they will hurt her??

but I am glued to the spot.

And my whole world stops spinning.

Eventually after I've stood there staring up the hall where my child disappeared
,tears now flowing freely,
and once my babies cries cant be heard anymore
a seasoned hospital staff member will touch my arm and bring me racing back to reality.
I start walking to the waiting room
I repeat the same things in my head each time
"this too shall pass"
" I can do all things through Christ who strengtheneth me"
"She/he's gonna be ok"
 "this surgery/procedure is gonna help him/her,
sometimes literally save his/her life"

its different when its not a "real surgery"
like today.
Today our youngest son Aiden
had to have a bunch of scopes and biopsies and tests of
 his mouth and throat( by his ENT,)
his lungs( by his pulmonologist,)
and of his esophagus, stomach, and intestines by his GI.
all under general anesthesia.

When its "not real surgery"
(meaning they don't do any cuts that need stitches),
they sometimes let me go into the procedure room with my baby.
They let me hold his hand and sing to him and talk him through it as he goes to sleep.
Those time are a little easier than real surgery.
 But the moment he's asleep
I am still expected to leave my baby on a hard metal table in a room full of strangers with unnatural blindingly bright lights and the chemically sterile smells that make my skin crawl
 and walk away.
and I die inside.
The same feelings of all the strangers surrounding my baby,
the thoughts of everything that could go wrong, fall upon me all at once
and again my world stops spinning.

In both situations,
The moments/hours that pass until I see my baby again are spent in a haze.
I'm thinking so much and not thinking at all.
I usually bring a book and end up reading the same paragraph over and over and over and over.
For really scary surgeries
We tend to have close friends and family that will sit with us 
and I can focus on the chocolate they bring or on whatever it is they are talking about.
But for the whole time one of my children is under,
I feel like I have stopped breathing.
I feel like I'm drowning and I'm praying 
I'm praying that someone will reach down and grab me by the hand and pull me out of this moment of a waking nightmare.
I'm praying for the specialists and doctors and surgeons,
I'm praying for the other families all sitting around us in the exact same boat.
I can look into the eyes of any other mother sitting there waiting while their whole world is back in the O.R. and it's like I am looking at myself in the mirror.
No matter the race or religion or cultural differences,
 in that waiting room when another mother meets my eyes, 
we have an immediate understanding.
And nothing in that moment matters except the children.

Years ago
,very early on in Lily's journey,
 when an unsuspecting nurse walked in on me praying and crying over a sleeping lily just hours before her second real surgery,

she told me it would get easier.

This nurse knew us really well, 
We had spent hours talking and days and day and months in her care while Lily was inpatient.
She was very familiar with Lily's diagnosis'
She knew that lily's journey was gonna be a treacherous one 
and she had also seen other parents go through similar journeys 
and to her it looked like it got easier for us "seasoned mamas of chronically ill kids" 
but what she didn't know is,
it really doesn't get easier at all,
 we just stop showing how hard it is,
 and so do our kids,
they get better at smiling through the pain, they get better at choosing joy each day.

so yes, I still die a little each and every single time my kid goes under anesthesia,
My world comes to a screeching halt every single time.
It doesn't matter if its a simple procedure or not,
 anesthesia is terrifying and it has almost taken the life of one of my babies a few times.
Then when all is over and my baby is awake and safe in my arms,
 the doctors have all met with me,
 and often new diagnosis are still raw in my ears. 
We get to either go home or back to the privacy of a private hospital room. 
and then oddly enough I really struggle to keep it together.
I spend the rest of the day struggling with tears and emotions of joy and relief and sadness and pain for my childs pain.
But the next morning I will wake up and it will be a new day. 
Most likely the child that had surgery or a procedure will wake up with a smile on their face
and I will choose joy too, 
and if they aren't feeling like smiling that's ok
cause I will choose Joy for them.
And everything will be ok.

Monday, April 13, 2015


time does funny things,
its completely intangible 
and yet nothing goes untouched.
its always there 
tick-a-tocking away. 
time used to terrify me.
when Lily came home on TPN and with a trach
i actually took down all the clocks in our little apartment
because the sound of the ticking would haunt me every night.
the greedy second hand was a background in all my dreams
It was completely out of my control, and i knew that,
I couldn't afford to be distracted by how much time we had
(or according to the Dr's)
did not have....
I needed to live in the here and now
I needed to learn to focus on every single moment,
to cherish it.

As Lily got sicker and sicker
we learned to be present. 
Not to dwell on the past and 
(as much as was possible)
not to fret what the future would bring.
And then on the worst day of my life thus far,
time stood still.
it dragged on and on and on 
and all i could do was stand there and pray and watch my little girl suffer
and then from the grief of it all 
I began to feel the horrific gut splitting pains that were months to early to feel for the little one in my womb.
I now was not only praying for the life of one of my children but for two.
And time dragged on.
It felt as if a lifetime passed.
and i prayed
and prayed.
And God heard my prayers. 
Miracles were made.
Within the next 9 months we had 2 new additions to our family.
Lily started getting better, 
Our foster son had many medical difficulties 
but was making steady progress 
and our bio-son Aiden was born perfectly healthy.
And as things were improving
time,that sneaky clever fox, sped up.
Before i knew it 2 years had passed.
And our family was thriving.

Sometimes its as if Time is curious about our grief and hardships
so it stops to watch 
but when things are going great for us
 its as if time feels bored and wants to fast forward to the next 
dramatic moment.
And as it speeds past and our lives are filling with more and more
I realized I needed that tick tock of the second hand
to remind me, in those quiet moments,
of how far we have come
and how good it can be to
simply live in the present.
So yes time still passes for us.
I see it every time i look in the mirror,
every time i get my babies out of bed in the morning and they
look less and less like babies
And now that experience ,
or more like nessecity, has taught us to live fully in the here and now
Time can pass
and I will cherish every sweet moment
and learn from every heartache along the way.

Sunday, December 14, 2014

its been too long

Its about time i started blogging again so stay posted for new updates. A TON has happened over the last two years and I need to write it all down so she can see how far she has come when she gets older. stay posted hopefully get something up this wek...

Monday, January 21, 2013

Hope Kids and more happy things!

I have been wanting to do a post about all of the Fun Lily has been having outside of the HOSPITAL!!
Lily was accepted in to HopeKids this past summer.
Hopekids is a non-profit organization for families of children with life threatening illnesses.
Hopekids provides weekly activities to give affected families something to look forward to.
A little bit of Hope can go a long way, 
especially when it seems like every day is just filled with medical stuff.
The first event Lily was able to go to was
Clifford Live!
She LOVED it.
next, Lily was in the hospital and they came to visit her!!!
They brought along a wife of a coyotes player and they gave Lily a goodie bag!
Then Shaun and I got to have a date night with other Mito hopekids families and
we saw The Trans-Siberian Orchestra.
 Next was the Hopekids Christmas Party!
This was AMAZING!!!
Lily got to ride a pony, there was a petting zoo,
She met Elmo for the First time
(this is the same Elmo that came to her party)
She got her face painted, got to meet Santa
 (who she didn't want anything to do with)
 and came home with LOTS of toys and prizes 
Plus there was an AWESOME picture booth there...
I told her to make a silly face and this is the face she made...
guess her parents ARE pretty embarrassing...
 We also got to go to
Moscow ballet presents The Great Russian Nutcracker
Lily was amazed by the dancers and tried to copy everything they did.
This is when her obsession with ballet began.
She has literally talked of ballet DAILY ever since!

This WASN'T a hopekids event but Lily was so excited about it it deserves mentioning
At IVIG they had free horse drawn carriage rides
This awesome man comes every week to PCH for the patients and gives them free rides!

This also WASN'T a hope kids event but it was AWESOME!
One of our nurses told us about 
"Sensitive Santa"
Its for kids with Autism or sensory sensitivities
(like Lily's Sensory Processing Disorder)
They have the kids wait in a quiet room with darkened lights and 
lots of crafts and coloring pages,
they had Christmas movies playing as well
and they had LOTS of Gluten free treats
(Gluten free diets are very common with sensory kids, 
and if Lily ate she would probably be gluten free)
They then took the kids out to Santa ONE AT A TIME
and let Lily have as long as she needed to get comfortable enough to sit by Santa for a picture.
It took her  about ten minutes but she sat by him and as you can see,
she smiled!
I wouldn't have been able to get her withing 5 feet of Santa at the mall!

 Lily also has developed a LOVE for "Tangled"
She has decided she is Rapunzel AND that Rapunzel is a ballet dancer
 Our sweet friend Patti had this hat made for her and SHE LOVES IT!
But since she has decided that she is a ballet dancer I cant get her to hold still for pictures!!

 HopeKids must have seen how much she Loved Rapunzel
because they called us with tickets to go see
Diseny Princesses on ICE!
 She was so excited when Rapunzel came out!
 At the end ALL the Disney Princesses and their Princes came out 
She was very excited!!
She watched the majority of the last half like this...

I have to say
(and I am a bit embarrassed to admit it)
I had tears flowing through the majority of these events.
HopeKids has given us something to look forward to besides just Drs appointments, and
hospital stays.
HopeKids has let Lily have days filled with all the wonder and awe that childhood should be filled with.
I am so so grateful to Hopekids for this!
The days that we get to go to things like this makes it feel like we are "catching up"
on all the childhood that she is missing out on because of her medical conditions.
Now, I am not saying Childhood Should be filled with expensive events and shows to make it worthwhile.
Mine certainly wasn't and I had a splendid happy childhood.
But Lily doesn't get to have carefree days.
She doesn't have a single day go by without medical interventions, from needle sticks, to
dressing changes, to meds, to machines, etc.
Her life is filled with pain and hurt and fear, 
and although we do our best to ease her pain and fear and we love her fiercely 
sometimes a show or a children's event is exactly what she needs to take all of our minds off of things
and just enjoy.
Thank You HOPEKIDS!!!

Lily is two!!!

Lily turned two on Jan 20th!!
My baby girl isn't a baby anymore!
She had an Elmo themed birthday party
 Her cake was done by Cup'n Cakes through Icing smiles
Icing smiles is an amazing non-profit organization that donates birthday cakes for medically complex kids. This cake was amazing!
The lady donated her time and resources so lily could have such an awesome cake.
Now she couldn't eat any of it BUT it made her smile so much and she wouldn't stop looking at it.
You can visit Cup'n Cakes fb page by clicking here if you are looking for a cake artist anytime soon:)
 My Elmo fruit platter...
I was very proud of this!

She was SOOOOOO happy!!!

 She wouldn't let Elmo go!
 even when she was coloring she had to hold on to Elmo so he couldn't leave
 She had to sit on Elmo's lap to open presents
She did let go of Elmo to play 
pin the nose on Elmo but immediately ran back to Elmo again.
She was one happy birthday girl!!!
Thank You to "Elmo" who donated her time to see Lily smile!
And Thank You to everyone who came and helped us celebrate the miracle of Lily's 2nd birthday!!!

Sunday, December 30, 2012

Puppet show

Here is the "puppet show" we did for the vEEG techs...
You see it as they would see it... kinda
and the storyline is left up for interpretation...

Saturday, December 29, 2012

Seizures = stay #25

So we made it a WHOLE MONTH!!!
We were released from the hospital on Nov. 28th
and we didn't have to be admitted again until Dec 28th!!!! 
Let me catch you up on why we are back.
On Dec 4th Lily had a full shaking/twitching/ eyes rolling/face contorting, heart racing seizure 
(actually I am supposed to say "seizure-like event" because she hasn't been diagnosed with seizures yet... but for purposes of this blog I am just gonna call them seizures...)

So She had this "seizure" and I called her Neurologist IMMEDIATELY
to see what they wanted me to do because in the past when she had had
probable seizures they just looked at her in the ER, wasted 6 hours of our lives and sent us home.
I didn't see why this would be any different so I called her Dr.
Well On DEC 7th they finally called me back and said they wanted to do a 3 day EEG, 
and they would set it up and call me back.
I waited a few days and no call so I called them.
No call back.
Lily had another smallish seizure in her sleep.
I called them and
Finally on Christmas Eve Lily was acting weird, really really uncharacteristically hyper/obstinate and almost aggressive.
Then before I knew what was happening she was twitching where she stood then went rigid and fell like a tree, breaking her fall with her face.
She was unconscious but breathing and was twitching all over.
When she woke up her face was swelling up and she was acting like she had a concussion so we took her right in.
There was no concussion and no broken bones so they sent us home.
I called Neuro to let them know. 
They didn't call me back.
I decided I was done playing games with Neuro and called and Emailed Our AWESOME PCP
She emailed me back and said she had contacted the on-call neurologist and He would call me.
He did call and said he wanted to just try some anti-seizure meds.
Well I told him to call it into PCH's pharmacy since we had a GI appointment there 
that morning anyways.
We went to our GI appointment and Lily started acting odd.
I looked at Lily's nurse and at her GI and said "she's acting like shes gonna have a seizure."
Within 2 minutes
she was rigid and was turning blue and she went unconscious
it was only for a few moments but it was long enough to scare her Dr.
She sent us right to the ER.
While this was happening Lily's PCP had been trying to contact me to tell us to admit her to the hospital for a multiple day EEG anyways.
Her PCP was sick of waiting on Neuro too,
so we went right to the ER where they admitted Lily for hospital stay #25
The started the EEG with Video this morning.
So We are just sitting here waiting for the EEG machines and Video monitors to do there thing.
I must admit It is odd being watched 24/7 by video. 
The Little camera follows Lily's every move...
We may have to create a puppet show for the poor person sitting watching us tomorrow.
It really has to be boring watching us... 
Yes I think an impromptu puppet show is in order!
:) even if it is annoying to our "captive audience"
I am sure it will entertain us and make Lils smile!