Monday, November 19, 2012

World Prematurity Day: Notes to Self

November 17 was World Prematurity Day.  It was an apt time to reflect on our amazing journey so far, so I took the time to look at some photos from our NICU days.  He was so tiny and I looked so…ill.  It has taken me literally years to feel like a somewhat normal person.  Or maybe I am just a completely different person now.  I am so very grateful that we are past that.  I can hardly believe it has been nearly two and a half years since I delivered Jax prematurely after an agonizing 32-hour induction that I can’t seem to forget.  Yet. 

Parenting a preemie has been a journey into my deepest personal fears, an experience that highlights my own fatal flaws, and an unpredictable ride that has tested the very limits of every relationship I have ever had.  If I knew some of the things I have learned along the way back then, perhaps the rollercoaster ride would have been slightly less harrowing.  Well, probably not.  But still, it may help others to hear some of these suggestions.  If I could have given them to myself, I surely would not have listened.  And that is Lesson Number 1. 

Survival Tip 1:  Listen to Yourself.
Many of us have learned to ignore or argue with that essence that speaks to us.  We cover it up with fears, what-ifs, and other mental dysfunction.  Learn to listen to what your very basic needs are during this time.  If you need sleep, don’t let feelings of guilt that you are not at the NICU or meeting your pumping demands overwhelm you.  For God’s sake, lie down for a few minutes.  Watch stupid TV.  Take a few minutes to feed your own needs.   Learn to listen to that gut of yours-it rarely steers you wrong.  If you can’t hear yourself, feel inside for that ball of tension you are probably holding in your belly.  Take a deep breath and release it.  Clear your mind.  Ask yourself what you need and listen to the answer.    

Survival Tip 2: Stay Present
Expectations were the bane of my existence, primarily because I didn’t realize I was operating under a set of false ideals that I thought my preemie would follow.  He still doesn’t sleep through the night but he has the academic and verbal skills of a five-year old.  Stay present.  Be that drop of water that floats along with the tide, letting obstacles wash through your life and then back out.    

Survival Tip 3:  Be Grateful
When you witness the afterlife firsthand, then get catapulted into a bizarre world where you are a weak, barely functional collection of hormones, resentment, anxiety, and guilt,  it is hard to remember to be grateful.  It is far too easy to focus on the negatives of our situations, but beware!  Our perceptions are our realities.  Somewhere, some mother is thinking, “You think YOU have it bad?!”  Things could be worse.  Appreciate every moment you are able to turn your face to the sun.  Smile through the tears.  Everything you do is a lesson to that little person you have brought into the world.

Survival Tip 4:  Enjoy the Ride
The Preemie Parent Roller Coaster can be filled with nausea-inducing drops, sickening lunges, and unexpected derailments.  Still, sometimes you coast, marveling at the scenery with a nearly hysterical bubble of laughter in your soul.  Every down has an up somewhere.  Look for the ups.  Enjoy them.  The one thing we can’t stop is the passage of time.  It would be foolhardy to risk my life and sanity to have another child, and when I look at Jax I still have melancholy associated with the birth and newborn experience we never had, and will most likely never have.  So, I must remember to enjoy the ride-this rollercoaster was designed especially for me, to test my own design flaws and challenge me to address them.

Yeah, I had it all figured out before Jax came along.  Now, I am like a child re-discovering who I am, what I enjoy, and what I need to feel secure in this unpredictable world of preemie parenting.  My old life is gone but not completely forgotten; it just seems like it all happened to someone else.  Now, I’m Jackson’s mom.  It’s who I was meant to be.

Thursday, September 13, 2012

The People Placed in our Paths

The People Placed in Our Paths

As I have grown older, (and debatably, wiser?), I have become aware of an underlying mental construct that has failed to serve me:  the belief that happiness is a place, or a destination.  For example, thoughts like “Once I have this degree, I’ll feel content,” or “Once I own my own home, I’ll be able to relax and enjoy my life,” serve only to cause anxiety and an uncomfortable restlessness; the feeling that you are not where you are supposed to be. 

Being aware of this faulty worldview leads me to consider an alternative:  that happiness and contentment rely not on the achievement of a certain thing, status, salary, education level, etc., but instead we find our ultimate groove as we continue along a path that has no destination.  Yes, we may have goals, dreams, and intentions, and reaching these certainly lends momentary joys.  However, deep contentment may lie in the appreciation of mundane, everyday things and experiences.  If we look for the richness that exists in every experience, true gratitude grows. 

I have also come to believe that the people placed in our paths serve as bringers or messages, peace, lessons, reminders to be grateful, and offer us the chance to do the same.  We can act or not act, we can speak or not speak, we can choose to interweave the fabrics of our beings with others each day.  Take yesterday for example. 

Yesterday started off pretty rough.  I had an awful night of interrupted sleep, and woke up feeling extremely run down.  I spritzed myself with rescue remedy and decided to listen to my gut for once, instead of forcing myself to participate in our usual morning activities.  So, we stayed home.  We watched too much television.  We played garbage trucks.  After a short nap, I felt a little better and with renewed vigor, I determined that we needed some fresh air. 

I felt a rush of energy the moment we arrived at the Royal Palms playground.  It’s a real gem of a place, nestled on a cliff overlooking the ocean.  Salty sea air and pelicans have a way of invigorating any tired spirit.  A few moments later, a woman and her five-year old son arrived.  I said hello to her, but she seemed guarded, pensive even.  I chalked her reticence up to being shy or unsocial.  Her son Paul, on the other hand, was a bundle of joyful energy.  He engaged us in conversation.  After about twenty minutes, his mother, Carla approached me. 

“Is he your only one?”  She said softly, watching Jackson as he chased her son.

“Yes,”  I replied.  For some reason, I knew not to ask the same question of her.  Instead, she volunteered the information.  She told me everything.

Carla’s daughter had been born with Trisomy 18.  They detected it a three months gestation, but she continued her pregnancy.  The family lived in the hospital for two months after the little girl was born.  Carla learned to do things she never thought she would have to do for her child:  use a g-tube to feed her, use an oxygen machine to help her breathe…and then, quite suddenly, her daughter passed away.  Her child became an angel baby a mere two weeks ago.  

How this woman was not an incoherent mass of grief was beyond me.  I was in shock.  I gave her a hug.  I told her some of my story, but it felt lame in comparison.  So much to be grateful for, I thought for the umpteenth time.  Her next words were surprising. 

“I never regretted having her.  We loved her so much.  My son loved having a sister.  We took her places, we enjoyed her.  We enjoyed every second.”

I was stunned.  She didn't mention feeling cheated or depressed.  She didn't talk about how hard it was to watch her daughter succumb to her condition.  No, she spoke of her time with her daughter with a smile on her face.  Talk about only taking the sunny hours.  This unassuming young woman had been through so much and still, she spoke about her tragedy without a tear.  She related what had happened with a hint of wistfulness for what might have been, but without the intense grief I could only imagine she felt.

It was then that I noticed her son was shivering.  The fog was rolling in and it was getting cold.  Carla had goose bumps.  I asked where they lived and discovered that they were stranded here, at this playground, waiting for their ride.  Luckily, I had some spare jackets in the car for them to wear.  The little boy told me he was hungry, and I was pleased to find a bag of goldfish crackers in the backseat.  Being able to help these people find a bit of physical comfort instilled a euphoria inside my heart that I cannot describe.  Carla’s phone had no reception, so I loaned her mine.  I offered to give them a ride to a coffee shop, but her ride came at last.  We exchanged hugs but not numbers.  All I know is that a woman named Carla lost her six-month old daughter last week, and that she is a hairdresser.  And she is one of the strongest mothers I have ever met.

I know that this person was placed in my path for a reason.  I could have stayed to myself, I could have been closed to what she had to teach me.  But, I allowed the connection to occur, and it was beautiful.  Happiness is a path, not a place.  The endless looking ahead makes us forget that all we ever need is right here.  Looking for richness in everyday experiences can be difficult at first.  Yesterday, I chose to listen to a stranger's story and help relieve their discomfort in whatever small way that I could.  A bag of goldfish and a few jackets thrown in the back of my car were the last things I expected to bring me inner peace.  But they did.

Who has been placed in your path?  How has your life been enriched by random encounters with strangers, animals, or something else?  I want to know. 

For more on Trisomy 18, check out the link below:
Trisomy 18

Tuesday, August 7, 2012

Living the Vision

Last month, I learned to hold a vision that I wasn’t sure was a reality.  To my surprise, the images I inserted into my brain every time I panicked about Jax’s astronomically high ALP levels BECAME our reality.  Doctors can’t explain what happened, but I know what happened.  Yes, it might sound new age or hokey, but I am a true believer that thoughts become things now.  Group visualization is a powerful tool and it is one that I wish I had internalized years ago.  Thank you to everyone who helped holds our vision when we were weak or tired.    

Last weekend, we lived our vision!  We went camping in Carpinteria with 19 other children and their families.  Our acceptance into the Wolf Pack, as they choose to be called, delivered us onto a sandy beach that bordered a large, grassy field.  The rear of the field boasted a unique, semi-enclosed playground.  Across the street, a line formed in front of a popular burger shack.  In short, it was paradise.  The weather was perfect, there were children (or cubs, if you will) running around everywhere, and the beach was a five-minute walk over a nearby sand dune.    

Jackson went in the ocean for the first time (on his own terms of course, there is no persuading a Gemini!), squealing with joy until he turned blue with cold.  He also got to see his very first movie, projected on a huge screen in the field behind our campsite.  He sat for a few minutes, and then said excitedly, “There’s a fireplace over there!”  We learned some great new words like "campfire" and "s'mores" while cuddled in my pink camping chair.  He fell asleep that first night wrapped in my arms in front of the roaring fire, stuffing himself with marshmallows.  I think he outlasted all of the other children, and he had been up since 5:00am with only a 15-minute nap in the car.  (The benefits of being a Rooster Club member and head Party Animal, I presume!)

I loved the communal, tribal feeling of being with such a large group.  Everywhere Jax went, at least two little girls followed, holding his hand, tickling him, and feeding him snacks.  So many chairs surrounded the campfire at night that I couldn’t count them all.  We had a seemingly endless supply of drinks, snacks, and good company. 

Waking up super early was no chore at all when we had an ocean and a playground to walk to, friends to visit with, and best of all, the mint green garbage truck to watch as it dumped cans and dumpsters.  Jackson was overjoyed, to say the least. 

Several times during our paradise weekend, I had to stop and say, “Happy, thank you, more please!”  (This phrase is also the title of a movie I have been meaning to watch).  The euphoria I felt continued when we arrived back home, chock full of happy memories, stronger bonds, and inspiration. 

We can’t wait for next year!   

Friday, July 20, 2012

Happy Dance in my Soul!

Last Wednesday, my soul did a happy dance.  In fact, Jax and I both ran around the house yelling, “happy dance, happy dance,” as we jumped up and down.  I thought I knew what happiness and joy were before, but now I understand the true meaning of those words.  It was as though a waterfall of elation cascaded from somewhere in my being and overflowed, bringing with it a surge of energy and light.  We were going to be okay.  Jackson is going to be okay. 

Rewind to last Tuesday.  Worst. Day. Ever. 

This was the day we headed to the UCLA bone clinic to meet with a specialist.  He ended up wanting more blood.  He told us he needed to rule out some things I have a problem even typing out let alone thinking about.  He told us to expect Jax’s alp level to remain high, if not go higher.  I ended the day feeling attacked by something.  I literally felt poisoned.  I spent six hours writhing on the bathroom floor in agony.  I was shaking, nauseous, had chills, and the worst migraine I have had in 25 years.  My parents (they are my angels) came over to watch Jax because I was incapacitated.   

The next day, I woke up and went to a therapist who did massage, sage clearing and Reiki, which helped me immensely.  I decided that I could be strong, and I would be strong.  Then, I got the news that changed our life, again.  Now, I have added a lot of depth to my worldview.  I believe in magic, I really do.  We can all do magic, create our own miracles, and design better lives for our loved ones and us.  Magic is possible, people!

Here is Tuesday in review.  I woke up before the baby, which is rare since he wakes up at the crack of dawn.  I was a bundle of nervous jitters, and my mine really wanted to go somewhere scary.  Instead, I applied a technique that a fellow preemie mom had recently shared with me:  each time I felt that gnawing pinch of anxiety, I stopped and focused on the image in my head and the words in my mind.  If they were negative (and they usually were), I turned ‘em right around.  I have always had trouble doing this, but this time, I finally internalized the adage, “thoughts become things.”  If there were a remote chance that this was true, then my anxiety-ridden thoughts would harm my son.  So, I created a new image, and I asked our prayer and visualization circle of amazing friends to do the same.

I imagined our family on our beach camping trip at the end of the month, watching Jackson as he ran and played and laughed.  My husband and I would clasp hands and smile at one another, the relief of surviving another hurdle our secret joke.   I imagined taking Jackson to pick out his Halloween pumpkin.  I imagined a joyful family Christmas.   I sent out emails updating our close friends and family members, and asked them to share the visualizations.  They did. 

Some went beyond the visualization and told me some helpful stories.  As they sat down each day to picture a healthy Jax, to hold the vision for me during my times of weakness, some of my friends had some interesting images pop into their heads.  One friend said she saw Jax as a gawky, teenaged surfer boy, holding hands with a thin brunette.  Another said she saw Jax in her mind’s eye, at his college graduation.  His gown was burgundy.  (Maybe he’ll go to USC too!).

I don’t know if my friends are psychic, but we’ll see if their visions come true.  Mine will, I am certain of it.  We will be continuing our happy dance on the beach next weekend.  And we will continue to do our happy dance through the rest of this crazy journey we call life. 

Someone sent me this a while back:

It’s a guy doing his own happy dance across the whole world. 

Do it now, I dare you.  Stand up and do your own happy dance!  No matter what you are going through right now, it will make you smileJ 

Thoughts become things, so keep your thoughts trained on your positive outcomes.  I am happy to help you hold your visions too.  Contact me if you need me to send you any energy. 

Sunday, July 8, 2012

Holding the Vision

Just when you think it’s safe to go back in the water…

Our life over the last few years might best be characterized as a rollercoaster that has too many ups and downs, goes to fast, and has no operator to stop the ride.  From near-fatal complications during labor, to a NICU stay that disrupted the sacred process of family bonding, to a year of colic, reflux, medication, failure to thrive designations, and repeat hospitalizations, any mother would develop a little adrenal exhaustion, right? 

Following our recent hospitalization in March and April for a case of RSV that caused my son to go into respiratory distress in my arms in the middle of the night, I fell into a mild depression.  We were on house arrest for a month to avoid germs, since the virus had compromised Jax’s immune system.

Every time I “let go,” something terrible happens, I thought to myself.  I tried to implement my strict regime of therapy, vitamins, nutrition and even some exercise.  The days grew longer as summer approached and before long, I was feeling pretty good.  We spent our mornings on play dates, and our evenings cooking and hanging out.  Jackson was sleeping better, eating better, and talking up a storm. 

So, I let go.  I really did.  I was content for the first time in a long time, secure in the knowledge that we were over the last sickening drop on our roller coaster.  In fact, it seemed that we had managed to get off the ride.  We went to Jax’s two-year appointment without a care in the world until the doctor mentioned that it was now standard to pull a little blood at this time.  I was about to refuse, but something nagged at me. 

Once Jax had recovered from RSV, we were supposed to do a blood draw to ensure that his white count had gone back up.  I ran from the office, loath to allow any additional procedures to be done to my poor little guy who had ripped his own IV out in the hospital a few weeks before.  So, this time I figured we should probably submit.  The blood test was awful.  I felt awful for making him do it.  I took Jax for chocolate frozen yogurt, his favorite, to assuage my guilt.  Then, we forgot about it. 

Getting the phone call from our doctor at night a few days later was a shock.  Hearing that he had to repeat the test, because Jax’s alkaline phosphate level was off the chart, was a shock.  What was alkaline phosphate?  Of course, I googled it.  Thus began the biggest, sickest drop of the roller coaster yet.  We didn’t even realize we were still on the ride.  If I had any adrenal function left, it is surely gone now.  As we wait for the results of a specialist’s review and recommendations, I have to remember to hold the vision. 

What does this mean?  To me, it means believing in a very strange, fey thing that occurred during my descent into subspace during labor.  Once I delivered, everyone left.  They went to celebrate while I had this annoying little feeling that the experience wasn’t done with me yet.  It wasn’t.  As alarms blared on machines and nurses whizzed by, I went somewhere else.  I saw things I can’t explain.  I felt my grandmother’s presence.  I felt intense love.  I was supposed to join them but I couldn’t without asking about my son.  Would he be okay?

The response was a vision.  I saw my son grow up to be a man right before my eyes.  As though I was viewing time-lapse photography, I watched a tiny infant transform into a tall, blond man with a killer grin.  I knew I couldn’t leave.  When I snapped back into my body, in shock and ravaged by hormones and medications, the vision stayed with me.  The vision of Jax as a happy, healthy young man completely contradicts what doctors are trying to confirm or disprove now. 

A fellow preemie momma friend, Kasey Mathews, reports that a similar thing happened to her when she delivered her daughter, Andie, at just 25 weeks gestation.  She saw two roads.  One road led to a funeral.  The other led to a happy, healthy five-year old girl.  When Andie developed RSV around age 2 (again, strangely similar to our experience), Kasey wondered why this was happening.  When I contacted her recently she said she believed that this was her chance to do things differently.  She held her vision.  Her daughter Andie has defied all doctor predictions regarding growth and development. 

So has Jax. 

I will hold the vision, and I ask that you take a moment to share it with me.  Picture us all together, happy, healthy, years from now, celebrating our lives together with the gratitude each precious moment deserves.  Perhaps my previous lessons in gratitude did not go deep enough before, but I have been cut to the core and I am now re-building my worldview around gratitude.  I literally cried tears of joy the other night as I folded my husband’s socks.  I was so grateful to be at home, doing the most mundane of chores.  It is so much better than being in a hospital. 

All we ever have is this moment.  Cherish it, protect it, and be present with it.  Hold your vision, as I hold ours.  

Thursday, June 7, 2012

Our Trashy Party

Where have I been?  Following a truly exhausting marathon camping experience in Yosemite, 23 loads of laundry, and three sleepless weeks of enduring another round of teething, I am proud to say that I single-handedly threw Jax the bestest Garbage Truck Party ever!

For those of you who have kids that love the garbage truck, you are well aware that there are no "Garbage Truck" themed party supplies.  I discovered this upon return from the Camping Trip from Hell (hereafter designated as CTH), and promptly went nuts searching blogs and easy for ideas.  Luckily, I found some!

I ordered the cutest invites from a gal on Etsy.  It was a single download that I had copied and cut at Office Depot.  They ended up being cheaper than purchasing store-bought invites, and of course as you know, there are no gaga tuck invitations.  Here is a link to the Etsy store I used for the invites:

Garbage Truck Party Invitation

I did a few things for decorations.  I collected clean trash for a few weeks before the party, and then we used a drill and some twine to make it into a Trash Garland:

I also made some cardboard signs:  The Junk Yard was our food table which had lots of Junk Food, of course!
 Yum, Waste Water!
 Jackson's "Dump" was the present table:
I had one activity other than the party-adjacent playground:  SMASH THE TRASH!  I must have called upon my inner preschool teacher for this one.  We had some leftover bubble wrap from my brother's move so I taped some clean, flat trash underneath and let the kiddos smash away.  Kids love bubble wrap.  (We should have wrapped my husband in it, but that is a story for another day).  

For favors, I ordered some of those mini trash grabbers from Amazon and little mini trash cans from Oriental Trading Company.  I stuck a gummy "bug" inside each trash can toy.  Then, I wrapped the favors in black dog poop bags so they would look like real trash, and topped them off by tying with a twist tie.  Then, I housed them in a "Recycling Center!"
 I ordered these super cute cake toppers from Toadally Cute, a seller on Etsy.  They turned out fabulous!

I colored some garbage truck pictures to stick on our tables and then we let the fun begin!  The kids all had a great time, until about 12:30pm, when everyone under the age of 5 either pooped or pooped out.  I managed to get Jax down for his nap by 1:30pm.  All in all, it was a stupendouly trashy time!

Thanks to our amazing friends and family, we are the proud owners of a FLEET of gaga tucks.  I think we own 11 now.  That is my life.  (We also run out of the house screaming with joy three times very Tuesday morning when the Gaga Tucks come.  I think the Garbage Man in our town worries that I am a weird Trash Stalker.  The Gaga Tuck drivers have been looking a little concerned lately).  Again, stories for another day!

Happy Birthday to my wonderful, amazing, gaga tuck loving son, Jackson!

Thursday, April 26, 2012

Gack Gack Goo! (What Does it Mean?!)

I think I have a Party Animal on my hands here.  How do I know this?  Well, there is the obvious genetic pre-disposition.  (I have been know to swing around a pole here or there and my husband has partied himself straight into the hospital before).  The thing about Party Animals is that they just don't want to miss out.  On anything.  Ever.  So, the Party Animal resists sleeping, eating, bathing, pretty much anything so long as the party continues.  The Party Animal just wants to be a part of the ongoing party.

I sure don't look like I am hosting a party lately (see Silver Fox post from a few weeks back).  But, you will be happy to know that I have moved beyond the homeless crack addict stage to the halfway house loony tunes phase of parenthood.  Even with this positive change, I am certainly in no shape to party!  Jax, however, seems to think everything is a party.  To him, a party is appropriate any time, any place.

Take a few nights ago for example.  I was exhausted as usual.  (My recent diagnosis of adrenal exhaustion explains some of the bone-crushing fatigue I seem to feel most days).  I was elated when Jax ate something for dinner (rare) and had taken an early nap.  By 8pm, it looked like the party was dwindling.  So, I put him to bed.  By 8:30pm, I was also in bed, my swollen, bloodshot eyes grating like they were full of sand as I squeezed them closed and begged the sandman to take me.

9:30pm:  Bloodcurdling screams ensue from the baby's room.  I shoot up, confused and disoriented.  (On occasion, I forget that the last two years has occurred.  Sometimes, I wonder where I am and why there is a screaming blond child down the hall.  Sometimes, I think my brain has truly been damaged by my experiences, but I digress).  I race down the hall.  I am his savior, his female knight in shiny armor.  Here I come to save the day, I think exuberantly.  He will reach his little arms around my neck and I will soothe him back to never never land....

Jax sees me and I am unprepared for the angry verbal assault that issues from his cherubic little mouth.

"Gack Gack Goo!"

He shouts this several times, reaching for me.  I try desperately to figure out what he wants.  Milk?  No, he screams again, indignantly, "Gack Gack Goo!"  Wet?  No again.  Something pinching him?  Pajamas in a wad?  Nope and nope.  Hmm.  My fried brain is not able to decode what he is saying.  Bad dream?  This gives him pause.  Now, I am pretty sure he doesn't know what a bad dream is.  (I also didn't realize he knew the word "shit" until he screamed it when I dropped his Blankie on the stairs).

Ok.  I'll go with bad dream.  I pull him into my arms and cuddle him until he drops off.  Then, I attempt to put him back in bed and he wakes up as soon as his little blond head touches the pillow.

"Gack Gack Goo!"

Deliriously, I haul him back into my arms and settle him in my bed.  I figure if we can sleep together, maybe we will both get more sleep.  (Unlikely, but it will be safer if I am horizontal at this point, since I am starting to see three of Jax).  

10:30pm:  Loud snoring and kicking has prevented me from sleeping at all.  This ain't working.  The Dr. said I needed to get some consistent sleep.  (Ha!  Why doesn't he come over here at night and see what I am dealing with?!).  Gingerly, I pick up Jax and carefully place him back in his bed.  He sighs and starts to move around.  I freeze, then silently drop down out of sight onto the floor like a stealth Mom Ninja.  Maybe if he doesn't see me, I'll get away with this transgression.  Thankfully, he remains asleep.  Elated, I practically dance back to bed.  Even if he wakes up at 5am, I could still get about 6 hours of sleep into my taxed body.

1:00am:  "Gack Gack Goo!  GACK GACK GOO!"

WTF.  WTF.  Where is my WTF stamp when I need it?!  Fine, we'll stay in my bed.  At least he will get some sleep and I can lay there while he kicks me and snores into my neck.  Well, this time, Jax decides that going to sleep is for the birds.  Well, a Rooster is a bird, so maybe he thinks going to sleep is for the bears.  At any rate, the Party Animal is in full on party mode now.  He says something that sounds suspiciously like, "Gaga Tuck," and I shudder, anticipating his tirade when I fail to turn on the tv in the middle of the night.  Luckily, he moves on to another topic of conversation.

Every few minutes, Jax yells, "Gack Gack Goo!"  He sounds more and more urgent about this undetermined thing.  He is getting more and more frustrated with me.  I am a complete moron, who can't decode this toddler speaking in tongues and he is very clear that I am at fault here for not being able to understand what he is saying.

4:00am:  I am stumbling back from the baby's room for the umpteenth time, because he has just informed me that he wants "Jack Bed."  My husband has come home from work, and I register that he is there out of the corner of my eye.  I mumble something to him, (and I am later told that I said something like: "Gack Gack Goo, it's French."), and I lie down, only to hear the indignant shouting begin again.

5:00am:  I am a zombie-like disaster of a wreck.  Jax is completely awake now, and appears to have no recollection of Hell Night.  He's smiling and giggling and does not seem to notice that Mommy is slumped over the breakfast table, semiconscious.

At some point, I am reminded of a time when I had tons of energy and so much excitement about what was going on in the world, that I didn't want to sleep either.  (I am so getting it back ten fold for all those times I worried my parents sneaking out to go to rock concerts and the like.  Karma, what a Bitch).  

The day that follows is like shuffling through cement for me, but Jax seems no worse for wear.  In fact, he seems to have gained some skills overnight.  He walks around, naming colors, shapes, letters, and numbers.  He counts to three, surprising me.  I hear several 4-5 word phrases that are PERFECTLY articulated!  He sings part of a song.

Something happened last night, inside his brain.  Maybe he was trying to tell me about it.  I chalk the night up to a weird developmental burst or something.  But I still want to know.

"Gack Gack Goo!"

What does it mean?  Someone decode please!

Hours of sleep logged that night:  2.5 (and not in a row).

Tuesday, April 10, 2012

Still Got It...?

First, a short update on Jax.  He is doing awesome.  Better than awesome.  I am not sure if there is a word awesome enough to describe the resilient little fighter I have been blessed with.  Sometimes I look at him and think that he is a divine being, an angel.  He certainly looks like one!

If you don't know me personally, I can tell you that my son and I could not look more different.  I have long dark hair, dark eyes, and olive skin that tans a deep brown during the summer.  My son is a blue-eyed towhead with a peaches and cream complexion.  If I didn't know any better, I would question if he was truly mine!  Usually though, I look at him in amazement and wonder if there is a God, and if he/she sent me an angel to make sure I learned whatever lessons I was supposed to learn in this lifetime.

Last week I learned about gratitude.  I am so grateful that Jax seems to have survived last week unscathed.  We are off of the breathing treatments and steroids.  He is breathing easier, eating better, and seems to be well on the road to recovery from the RSV/bronchiolitis challenge a few weeks ago.  He lost a lot of weight, but we are hoping he will get back on that growth scale soon.

I received many comments from folks who follow this blog, and most said they cried when they read about Jax's ordeal.  So, this week I will attempt to elicit tears of laughter from you, instead of making you sad or fearful for us.  Please, do not feel bad about laughing at my expense!  I had to laugh, remembering what happened as we headed to (yet another) doctor appointment.

Last week, we were driving to a follow up appointment with Jax's pediatrician.  The sun was shining, and he was doing so much better, I could hardly believe he had been in the hospital a mere 24 hours beforehand.  I, on the other hand, felt truly haggard.  I hadn't slept in days, (what's new), and I was fighting my version of RSV, which had manifested as a nasty cold.  In short, I felt like the floor of a taxicab, and I am sure I resembled a homeless crack addict.  But, I digress.

Thanks to the hospital visits, sleepless nights, and overall feelings of ill health, I hadn't seen the sun in a while.  I wanted some fresh air, so I had all the windows rolled down, and found myself grinning because there was no labored breathing coming from the back seat.  So, with the loopy grin still settled on my face, I stopped at a red light, and then a brand spanking new red porche pulled up next to me.  In it sat a Silver Fox.  You know, one of those hot, older, rich men with hair that is starting to gray at the temples?  Hot.  Older.  Rich.  What more could a girl want?  (Well, MH is pretty hot himself, being a muscle-bound longshoreman and all, but a girl can have fantasies too, right?!).  

Out of the corner of my eye, I notice that Silver Fox is looking directly at me.  He is smiling.  Well!  I feel myself sit up a little straighter in my seat.  I must still have it!  I think to myself.  Even after 22 months of sleepless nights, several recent panic attacks over my son's health, currently being violently sick myself, AND being unshowered and in sweats, I STILL GOT IT!  I am elated!  Nothing can take away my obvious allure, I think excitedly.  I sneak a peek back, and now Silver Fox is wearing a broad grin.  He is definitely staring right at me.  I smile back.  And then I realize...

As I mentioned, I had all the windows down.  But I forgot to mention one minor detail.  I am blasting Charlotte Diamond's "I am a Pizza" song.  Very.  Loudly.  If you have ever heard this song, you know that it is inane at best, and definitely ridiculous.  (See link below to hear it).  Thanks to my former life as an early childhood education specialist, I have been unconsciously singing along (loudly) AND engaging in the hand movements for Jax's benefit in the back seat.  I start to sweat as I realize it looks like I am alone in the car.  Singing and performing hand motions.  Acting like a full blown lunatic.

Just as I start to turn redder than the stoplight, it thankfully turns green and Silver Fox speeds off with a little wink at me.  I roll up all of the windows to avoid any future embarrassment.  I catch a glimpse of myself in the mirror and oh God, do I ever look destroyed.  Besides the red nose, dark under-eye circles, and sallow-looking skin, I have ambiguous stains on my tattered sweatshirt, and some telltale bleach stains on my sleeve.  My toenails look like talons, and my hair looks it hasn't been brushed all day.  Oh that's right, it hasn't.  I sigh, and vow to start getting dressed before leaving the house.  Oh yes, and I definitely need one of those Baby on Board signs, just in case Silver Fox drives by again...

Hope my misfortune made you chuckle.  Feel free to leave me a comment.  I am dying to know if this has happened to anyone else!

Here is the link to the song:

Tuesday, April 3, 2012

Take a Breather...

Last week I learned something really important about gratitude.  I thought I was learning to practice gratitude, but as it turns out, I wasn't really connected to just how grateful that I, (and all of us), should be for things we take for granted every single day.  Take breathing, for example.  Each day and each night, we breathe.  As we dream, wake, grumble through our early mornings, go to work, come home, exercise, party, fight, make up, eat, sleep, and do it all again, we breathe.

This simple act became so salient, so complicated, and so important, when my 21 month old went into respiratory distress on Monday night.  He could not breathe.  HE COULD NOT BREATHE.  As a mother, watching your helpless, frightened, and confused toddler struggling to take a breath, you realize that everything you thought you wanted, everything you thought you were grateful for, pales in comparison to that simple, life-sustaining act we do without even thinking about.  I'll start at the beginning of this experience.

Thursday:  Jax and I had such a fun time at the Lomita Train Museum with my Dad.  The small, gated place was perfect for Jax to run around without me being paranoid that he could escape or get hurt.  The weather was gorgeous and sunny.  Jax ran all around, saying cute things like, "Twain!  Bwack Twain!"  He got to climb the ladder and explore the locomotive and caboose.  We had a great time.  That night, he slept so well that I thought my days as a Rooster Club Mom were numbered.

Friday:  Jax woke up after a 10-hour stretch of sleep.  He felt a little warm, and I heard a sneeze or two.  Oh well, I thought.  The sniffles.  No worries.  All kids get the sniffles.  I had even begun to subscribe to a termie momma mantra that I had been hearing a lot lately:  "All kids get sick.  I don't keep my kids from germs, what's the point?"  Basically, I had started to convince myself that a few germs were a good thing.  We were over that preemie mom fear of germs, hospitals, RSV, and other scary things.  Jax was nearly two years old, after all.  (Boy, was I ever wrong!)

Friday afternoon:  I had given Jax two doses of Tylenol before I finally took his temperature.  To MH's dismay, I had to do this rectally.  It was 102.  I felt my heart rate spike, but I stayed relatively calm.  This was the highest fever Jax had ever had, and I had already dosed him with meds twice.  Time to call the pedi, and cancel our playdate with a good friend.  We ended up at the pedi by 4pm, and we were diagnosed with a double ear infection.

By the time I got out of that office, and to my drive-thru pharmacy in town, it was nearly 6:30pm.  The pharmacy f-ed up, and I was desperately trying to maintain my zen as I drove around the block repeatedly, waiting for them to fill my Rx.  Jax was cranky, sick, and feverish in the car, and I didn't want to expose him to CVS.  Isn't that the point of a drive-thru pharmacy?!  They claimed my pedi never faxed them our Rx (which was a blatant lie; I stood there as she did it).  I realized I hadn't eaten since breakfast, and that I was starving.

I treated myself to a Coke and some Jack in the Crack tacos as we circled the pharmacy.  I knew the drill.  Whenever Jax got sick, he woke several times a night and needed me to hold him.  I knew it would be a long, long night, and that Coke would be necessary.  (Reminder:  MH works nights and is gone from 4pm-3am nightly, so there is really no reprieve.  Plus, as all Mamas know, when your sick baby wakes up in the middle of the night crying, he wants YOU!).

By the time we got home with our handy dandy amoxicillin, it was almost 7:30pm.  I rushed the baby through dinner and attempted to administer the meds.  Apparently, that med tastes like crap.  Jax fought, cried, and began coughing and spluttering every time I came near him with the syringe.  I tried everything I could think of, and ended up forcing the meds down my poor son's throat, only to have him spit half of it back in my face.  Exhausted, I prayed he had ingested enough of it to work, and he went down to sleep.  That night, he was up 4 or 5 times, and I was in and out of his room.  I finally put him in my own bed (where he has NEVER slept), only to have the coughing and congested snoring keep me awake until he sat up asking for milk around 5:30am.

Saturday:  I feel pretty good considering I only got about 2 hours of sleep.  Jackson seems a little cranky.  I try to administer the meds, and now, thanks to the handy dandy syringe, he now refuses Motrin, Tylenol, and his antibiotics.  He runs away screaming at the sight of the plastic dropper.  I force a dose, and he chokes, splutters, coughs and stares at me like, "Why mommy?"  My heart starts to break.  I have this nagging little feeling that something is seriously wrong, but I tell myself it is just that old anxiety stemming from the circumstances of his birth and first year that I need to let go of.  I tell myself it's just a cold.  All kids get sick.  Not everything is a medical emergency.  The voice persists and I shove it down into my guts, ignoring it.

By Monday, I insist to myself, everything will be back to normal.  Saturday passes slowly.  I try to rest during Jax's nap, but the intermittent coughing from the baby's room disturbs my nap...and his.  He wakes up cranky, and refuses to eat.  At this point, we are almost exclusively back on bottles.  This night is a little worse than the last one, with more waking up and more running back and forth trying to settle Jax to sleep.  I force a dose of Motrin while he is hardly awake around 1:00am, and amazingly I get it down him.

Sunday:  Thanks to the Motrin I think, Jax has slept for a few hours, but wakes up at 5:00am crying.  I have heard him rustling around and moaning all night.  I worry his ears hurt and curse myself for being incompetent and being unable to administer meds to my toddler son.  (How is he stronger than me?!)  I send my husband out to get every type of juice, pudding, ice cream and popsicle to mix the meds in, to no avail.  The day passes in a frustrating haze of exhaustion and mounting worry.  Jax goes down to bed easily, but within 30 minutes, he is coughing and sitting up crying.  He proceeds to do this every 30-45 minutes until 6:00am.  I am a wreck, running back and forth to his room, and I finally prop him up next to me.  His breathing sounds labored, and he is coughing intermittently, but I am convinced it is just a cold.  What else could it be?  All kids get sick.  I toy with taking him to urgent care, but I am so so tired.

Monday:  At 5:00am, Jax coughs himself awake.  He coughs so hard I can see that he can't even take a breath.  He panics, and starts crying, which makes the coughing worse.  I grab my keys and race to his doctor, where they give him a breathing treatment.  He hates it, and the loud noise of the nebulizer ain't helping.  He struggles, and coughs even more.  He is still running a temperature, but amazingly, his ear infection seems to be gone.  Thank god, the pedi pulls the antibiotic, which is good because apparently, even though I am a highly trained early childhood specialist and behaviorist, I am unable to administer meds to my toddler son.  We are sent home on breathing treatments.  Jax seems ok until I put him down for bed that night.  That's when all hell breaks loose.

Monday night:  Jax is coughing so hard, and so often, I can't even count to three between the heavy, deep convulsions that wrack his body.  I try another breathing treatment and quickly determine it isn't doing jack.  I feel the anxiety bubble up and paint my neck red.  I call my MIL who lives a few minutes away and she agrees to meet me at the ER.  I tell Jax that it's ok, and mommy will help him.  I throw on my shoes, grab my bag, and turn the 7 minute drive to the hospital into a 4 minute race.  I hear Jax struggling to breathe the whole way.  Oh God.

I fly into a parking space, grab the baby and force myself to stay calm for his sake.  It's ok honey, I tell him.  I know you are having trouble breathing and the people here will help you.  I try to smile at him and I notice he is blue around his mouth.  I can hear my own heartbeat and a roaring in my ears as I dash into the ER.  The waiting room is full of people.  I beeline it to the window and the person there immediately takes notice.  He's turning blue, he can't breathe, I yell.  

It's like no one else is there but us.  The other people are just fuzzy shadows in the background as the admitting clerk yells for a triage nurse, stat.  We are rushed back into the triage room and a very calm male nurse begins taking Jax's vitals.  This pisses the baby off more, which makes his breathing even more labored.  I feel the panic start to overcome me and my voice breaks as I try to explain what has been happening.  We try to get an oxygen read on Jax and it stops at 68, which can't possibly be accurate.  Then, it bumps to 86, which is low enough to make me start having palpitations.  The nurse unzips Jax's car jammies and I can see his chest and abdomen literally sucking in as he struggles for air.

We are taken to a bed separated from another bed by a hanging sheet and they start us on oxygen.  A doctor comes and orders a bunch of tests and an IV.  I am oddly calm, it is as though I am not really there as I question the doctor.  Scary words float around my head, like "Reactive Airway Disease," "Pneumonia," and "Respiratory Distress."

I am sitting on the gurney holding my son as we are wheeled to the x-ray room.  I find the mental space to worry about radiation damage.  Then, I see the contraption they want to use to get the x-ray.  Has anyone ever x-rayed a toddler's chest?  The device they use is barbaric.  It looks like a plastic mold of a child, with a front and back.  Below this is a wooden rack with holes for the child's legs.  I am told to stand Jax up in this thing, and they close him into it with his little arms pinned painfully above his head.  WTF?!  He says, Mama!  He starts wailing piteously.  I tell the guys they have approximately 3 seconds to get their picture before I rip my son out of that thing.  They know I mean business and they literally trip over each other rushing to the press the button.

Jax is now hysterical, and coughing like crazy.  I try to calm him and fight tears myself as someone else comes to take his blood.  We count to ten several times and he stops struggling.  When they are finally done, he gasps, "yay.."  in a heartbreaking little voice.  Yay.  I did a good job, mommy, he seems to say.  I cuddle him fiercely, wipe away my own tears, and vow to buy him every damn gaga tuck toy in existence once we are home.

It is now midnight.  Someone comes to insert an IV and I kick them out.  Give the kid a break dammit.  The doctor is summoned to chastise me for refusing treatment.  I listen again as to why an IV is necessary.  I check Jax's diaper, and realize he hasn't peed in 8 hours.  He is getting dehydrated.  I agree to allow the IV, knowing my husband is going to flip out when he sees it.  My husband is at work, and since we are on one income right now, he can't just walk off the job.  MH would have freaked big time and probably would have taken out the x-ray tech, so I tell him to come by on his break, not to worry, and that we should be home before he gets off at 3:00am.  In the midst of this, my parents and MIL have arrived, and just their presence helps.

My husband visits on his break and Jax is doing better after the steroid and breathing treatment.  I am certain we will be home soon.  I send MH back to work, and my parents (man, can they ever party), stay to keep us company.  We watch some Thomas and Jax starts to fall asleep in my lap.    

A respiratory therapist shows up next, and he is nice, with kind eyes.  Jax is given an oral steroid, which thankfully he swallows, probably because he is so exhausted he doesn't have the strength to resist.  Now, the RT blows a bunch of stuff in his face, which seems to worsen the coughing and desats on the monitor.  For any non-preemie parents, desats are when one's oxygen plummets, and it is scary as all hell to see verification of this occurring as the monitor flashes red and begins to sound an alarm.  I hold Jax through this procedure and it is the longest ten minutes of my life.  Until the nasal swab.  Jax needs an RSV test.  I question this too.  I am aware that RSV can be deadly to young, early-term preemies and even term babies.  But, Jax is almost 2!  How could RSV be causing this?

I had pictured a nice soft q-tip gently scraping Jax's nose without even waking him, so I am horrified when I see the giant red tube and collection container.  The RT explains that a squirt of saline must be administered high into Jax's nose to get the sample.  We hold him down and it takes 3 adults to get a tiny bit of mucous.  At this point, I am DONE.  I tell the RT that he better have enough to test, because no one is doing anything else to my son tonight.  He swirls the material in the container and comments that he has a little and it looks cloudy.  This sounds ominous.

The doctor returns to tell me the chest x-ray is clear but that because Jax requires oxygen and breathing treatments, he needs to be admitted overnight.  Of course the hospital we are at does not have a children's unit.  An ambulance is called to transfer us to Miller's Children's Hospital, in the next town.  I groan.  This is all starting to sound quite serious.  All kids get sick, I think, stifling a maniacal laugh.  I text MH and then we wait for the ambulance to arrive.  The IV is placed, and it takes two grown men and me to restrain the baby and get in in.

3:30am:  Two EMTs show up with a gurney and we strap Jax's car seat to it.  He wakes up during these proceedings and I force a bright smile onto my face.

"Wow!  Jackson we get to ride in an ambulance!"  We wheel the baby outside and he perks up when he sees the ambulance.

"Ambal-ence!"  He says excitedly.  "Fire Tuck!"

The EMT assures me that all kids fall asleep immediately when riding in the ambulance.  I should have bet him ten bucks to the contrary, because he's shaking his head in disbelief when we roll up to the hospital and Jax says, "Yay!  Ambal-lence!"

"Can't believe it, he's the first one to ever stay awake," he says partly to himself.  Ha!  Hasn't he heard of the Rooster Club?!

We are admitted and we make up the chair-beds.  The crib looks like a jail cell with its metal sliding sides.  I worry for a moment thinking that Jax will never want to lie in this unfamiliar contraption.  But, I force myself to smile again and ask him if he is ready for night night.  I had the sense to grab his blanky on the way out of the house and he cuddles it to him and says in a tiny, exhausted voice, "Night night?  Yay."  Amazingly, he falls asleep immediately.  Even the head Rooster can't stay up for 24 hours!  (At this point I am breaking my Rooster Club record, and when it is all said and done, my longest stretch of being awake will exceed 33 hours).

Now, we settle in to wait for the doctor.  He tells me is it rare for a child this age to be hospitalized with RSV, but that in Jax's case he has developed bronchiolitis.  Treatment is breathing treatments every four hours, and steroids every 12.  Vitals will be taken every 4 hours.  Blah, blah, blah.  I think I talked to him but things started to glaze over.  I send my party animal parents home.  MH arrives and he is pissed as he stares at poor Jax, clad in his hospital gown and diaper, in his baby jail cell.

MH has some old, gnarly memories of this hospital.  He used to come here as a child to see his sister, and it clearly traumatized him.  Now, he gets to see his son in the same place.  Jax begins coughing and he desats.  I am delirious but adrenaline I did not know I still had courses through me and I put Jax over my shoulder, trying to find a position that will ease his suffering.  He is exhausted, from the nonstop coughing and struggling to breathe.  His little ribs contract hard as he gasps for air.

I am a machine, a patting, soothing, machine whose mind has thankfully turned off.  Every 30 minutes, I pull Jax up into my arms to help him through the coughing fits and the wheezing, the gasping, the fear.  A sob escapes me.  Then, MH asks me if Jax is going to die.

"No!"  I hiss fiercely.  "Don't you ever say that again!  Pull yourself together!"

Then, I pull the thin hospital blanket over my head and cry silent tears as Jax labors next to me.  How long can he endure this?  How long can I?

Tuesday:  It is a haze of coughing, desats, breathing treatments, and trying to rest in between.  It is a nonstop revolving door or staff coming in and out.  Family visits and brings food that I can't seem to stomach.  We had two or three severe spells where Jax coughed so hard and so long, that I started crying for someone to help him as his little body convulsed.  Then, he would say, "yay" in a barely audible voice as he fell back on my shoulder, too exhausted to move, waiting for the next bronchospasm to hit.  There was nothing we could do, but try to force more steroids down his throat, and watch, and hold him, and wait.  At some point, Jax pulls his IV out and I don't even notice until the nurse points out the blood dripping all over him, and me.

Blood dripping is an interesting omen.  I realize at this point that I am 5 days late.  I agonize over the possibility of having to go through all of this with another child and I know I just can't do this again.  I lose it, and MH gets me a test, which thankfully is negative.  I spend the night wide awake anyway, thinking about the wine I drank two weeks ago, and trying to recall where I stored the baby swing.  Every few hours, someone comes in, turns on the floodlights, and disrupts my poor son's sleep with breathing treatments, medication, and taking his vitals until MH is ready to beat someone to a pulp.

Wednesday:  Jax's oxygen has remained stable.  He is eating a little.  A nurse comes in and tells me he must be pretty strong because most kids admitted in his shape are there for a week.  Our doctor has told her Jax will be going home this afternoon.  My husband is overjoyed.  We wait for hours until the doctor shows up.  Release, sweet release!

On the way home, we grab huge frappucinos and put Jax to bed.  Then, I sterilize EVERYTHING.  All the toys. All the clothes.  Everything that has touched the hospital.  I shower for the first time in days.  I try to rest but I am so amped up, listening to the rattle in Jax's chest as he breathes.  He sleeps in my bed because I am too scared to have him away from me.  He seems to need to be in contact with me too.  he sleeps cuddled against me for the first time, and  I picture our souls and auras entwining, mine feeding his love and strength, and health.  Air goes in, I think.  Air goes in.

We head to the pedi the next day, and she expresses great sympathy about our ordeal.  I even see tears in her eyes.  She tells us to continue the steroids and breathing treatments until the following Monday.  Then comes the kicker:  We are on house arrest for a month.  Jax's immune system is compromised and getting sick again would be big trouble.  I feel like I have regressed back to our early preemie days, when no one could visit.  I realize I had been trying to convince myself that we were just like everyone else.  I was trying so hard to ignore that little voice that never steers me wrong.  Don't worry about the germs, not everything is a medical emergency, I told myself.  Now,  I feel like the wind has been taken out of my sails.

Jax is back to being skin and bones.  He won't eat, and I feel the familiar anxiety about his weight and his failure to thrive designation return full force.  I had just started to let these worries go.  Will we ever be "normal"?  I fall into a little depression.  I lie awake blowing my nose and sneezing, because I now have RSV.  I cry a little.  Then, I realize that Jax is sleeping peacefully for the first time in a week.  He can breathe.  Oh, thank God, he can breathe.

We have so many things to be grateful for, but sometimes we forget about the most important ones.  We can breathe.  We can see.  We can hear, and feel, and taste.  We can talk, and laugh, and decide what happens to us.  I am grateful, so so grateful, for so many things...

I am grateful that my son can breathe.
I am grateful for our medical insurance.
I am grateful for my parents, in-laws, and MH.
I am grateful for my friends, and everyone who sent positive vibes during this experience.
I am grateful that I am not at work, because truly, I am needed more at home.
I am grateful to be alive, healthy, and supported by so many.
I am grateful that my son can breathe....