Thursday, August 11, 2011

Justice Update: 08.11.11

It's been a while since I've written anything, and much has happened, so I wanted to take a few minutes to write out a post that basically brings everyone up to speed.  In the weeks since the accident, Justice has remained in critical condition, and has been transferred from the Washington Hospital Center here in Washington, DC to Shriners Burn Center in Boston, MA.  We are currently rotating family in-and-out on a weekly basis to help make sure someone stays in Boston with Justice.

It's been difficult, to say the least, but thanks to the generosity of our employers & Shriners, it's manageable.  Jason's been approved to work remotely every other week - so he's on a schedule where he spends a week at home in DC, then another week remote with Justice in Boston.  I'm still waiting for my employer to approve my remote request, but as long as it's approved, I'll be with Justice & Jason one week a month.  I'd love to schedule more than that, but I have to be realistic - Zoey (who is only 10 months old) isn't likely to tolerate much more than a week a month away from home.  And, I'm not sure my project manager would be too pleased with that scenario, either.

As for Shriners - they have been absolutely amazing!  They are providing all of our accommodations (either via a room at the hotel near the hospital, or once Justice is out of the ICU, a family room - much like a hotel - within Shriners Hospital).  Also, they've completely taken care of our food, and have promised us that we will never see a bill for anything the insurance doesn't cover. I feel like we owe Shriners BIG after all this!

As for Justice's health - it's literally a day-by-day thing.  Some days are better than others - yesterday was plum awful, but today is looking better.  He's undergone about 8 surgeries so far, and will need at least a few more before they even consider letting him leave the ICU. Chances are he will not leave the ICU until Labor Day weekend, and that's only a guess at this point.  We still don't know when he's going to come home, but it sounds like it may not be till Halloween, or later.  And, even once he comes home, he will require months of outpatient therapy and lots of follow-up appointments.  The staff in DC said it would likely be 9 months to a year before Justice is fully recovered. We still have a LONG road ahead of us.

Wednesday, July 27, 2011

Justice Update: 07/26/2011

As everyone knows, our son, Justice (who is 14 and severely autistic), was involved in a fire accident this past Sunday, July 24.  For complete details surrounding the event, please see here. The past few days have been touch-and-go, but Justice is hanging in there.  If there's one thing Justice is - it's determined and strong willed, which can be a little challenging sometimes, but in this case - it's a good thing!

First off, we created a Facebook page "Prayers for Justice" where we'll post quick status updates on a daily basis, hopefully.  This blog will likely contain much more details, but I can promise you we won't be able to update it nearly as often.  I highly recommend anyone with a Facebook account click the "Like" button on the "Prayers for Justice" page to get updates as soon as we have them.

Now, for the updated details.  Let's start off with some good news...Jason has been discharged!  He does suffer from 2nd degree burns on about 90% of his left hand, and a few smaller burns on his right hand, but over all, the doctors believe his hand will heal completely on it's own.  Scarring may be an issue, but right now, that's the least of our worries.  Jason has a follow up appointment next week, and his employer has gifted him a week of compassionate leave, so most of his time is spent in the hospital watching over Justice.

As for Justice, he is stable, but remains in critical condition.  I spoke with his nurse yesterday, and she said his burns are life threatening; however, they believe his youth and overall health will help him pull through.  His vitals are good (all things considered) and he's already pulled through one (of several needed) OR trips.  His next surgery is scheduled for Thursday, which will let them do a little more work and see how the first set of grafts are taking.  The question the staff can't answer is how well will Justice function once he does recover from these injuries.  It may be possible that he will function at a lower level once he recovers, but we won't know for sure.

Justice's age plays a part a lot in his care.  He's currently being treated by a staff that is typically used to dealing with adults, not children.  But, they are seeking help from some of the best physicians in the country.  They've reached out to the Shriner's Hospital in Boston, MA to make sure they are able to provide the best possible care for Justice.  For now, both facilities agree that he should remain in D.C., but once the surgeries are completed, there is a possibility he may be transferred to Boston if they feel he can be better served there.  As much as I'd like to visit Beantown...I really don't want to visit under these circumstances!  I want Justice to would like our son to stay close to home.  :)

Right now the medical staff is trying to determine a good sedation level to keep him at when he's in between OR trips.  They want him to be awake, but not so awake that he'll obsess about picking at himself, or have enough strength to do too much damage.  For most patients, communication with the patient helps staff explain why it's vital they don't remove the bandages; and determine the patient's pain level.  For Justice - communcation isn't an option.  He doesn't speak, and although he can understand very, very simple instructions, he wouldn't be able to even begin to have any sort of productive dialogue with medical staff.  So, for now, they're using soft restraints to keep him from moving his arms too much, and sedation to help keep him in a "twilight" zone.  The nurse best described it as the period of drowsiness you have right before you fall asleep - where you're still awake, but not quite asleep yet.

Yesterday, he woke up a few different times - only for minute or two.  At least two times when he "woke up", he opened his eyes enough to take in different parts of the room.  The first time, Jason was standing right there and Justice looked directly at him.  We're pretty sure he realized it was Jason standing by his bed.  Later that evening, Tina (Justice's mom) & I were visiting with him - Tina was standing at his head, and I was on the far side of the room (I can't be close to him...or even really stay in the room for more than a few minutes).  I was watching his arm and it started lifting up, and a few seconds later, he opened his eyes and looked right at Tina.  We're pretty sure he saw her too.  I think both Jason & Tina needed that.  They needed to see that their son was still hanging on...and I think they both needed Justice to know they were there for him.

Monday, July 25, 2011

Justice's Fire Accident

For those of you that know our family, you know that Justice (Jason's son) suffers from a severe case of Autism...and with that comes a pretty profound case of OCD.  There are few things that Justice enjoys - and a good camp fire has always been one of them.  One of his favorite activities, regardless of the weather, is to sit outside with Jason and just watch the fire.  Unfortunately, he also likes to put things in the that was a challenge we've dealt with in the past.  But, typically, he's only trying to toss in some of his toys or extra garbage, so it's not too big of a deal.

But, things took a turn for the worse on Sunday, July 24.  Jason and Justice were enjoying a fire outside in the late morning, and as the embers started dying down, Jason decided to get some extra cardboard from our recycle bin.  We typically use the cardboard and extra papers from the house as kindling to feed the fire.  Jason left Justice alone for only a few seconds - which he has done countless times before without any issue.  But this time, it ended in tragedy.

While Jason was at the recycle bin (which is only about 30 feet away, and was gone for less than a minute), Justice jumped up from his chair, opened our tool shed, retrieved the gas can and tried to pour it on the fire.  He soaked his feet and the ground in front of him in gasoline, and the flames responded.  Justice let out a loud "OW" (which, at the time, I thought was Jason yelling "NO") and Jason ran back to see what was wrong.  By that time< Justice was already engulfed in flames.

Jason ran towards Justice to help him, Justice started backing away from the fire, but the flames just kept following the gas trail in front of him.  He tripped and fell on his side and Jason jumped on top of him and started ripping his clothes off him and using his bare hands to help put out the flames.  Eventually, at some point, Jason realized the hose was on (fortunately - they had been playing with the water, and keeping it on for emergencies) and snatched it up to start hosing Justice down.

By that time, I had gotten outside - I expected to see Justice throwing a fit and upset because he probably wanted to throw a toy in the fire...but I just saw Justice black and red on the ground and Jason hosing him down.  I called 9-1-1...completely hysterical! Within a couple minutes (which seemed to take FOREVER), the ambulance arrived and had our house completely rearranged to get to Justice.  They got him on a high dose of morphine right away and whisked Jason and Justice off to the Washington Hospital Center's Burn Unit.

Jason is lucky - the burns on his hand aren't as severe as we had originally thought.  He was kept overnight for observation, but released from the hospital on Monday, July 25.  Justice, well half of his body is completely covered in 2nd and 3rd degree burns.  And, it looks like he swallowed/inhaled some of the gasoline and flames...probably from when he screamed.  He is in stable condition, as of now, but he's got a long, long road ahead of him.  He did pull through his surgery on Monday ok, but that's just the first of many that he has to go through. The doctors have no clue when he'll get to come home, the best estimate they can give us is "at least a month or more".

Please continue to keep our family in your prayers...we have a long very emotional road ahead of us.

Wednesday, November 24, 2010

Zoey's Delivery

When you're pregnant, it seems like everyone has advice for you - even complete strangers.  Everyone means well, but with the overload of stories you're bound to hear and the hormones racing through your body - you can be left feeling a nervous wreck. When Jason & I decided to listen to our OB and chose a planned C-Section for Zoey's birth, we heard it all from everyone (see this post for the story).  Some folks agreed with our decision, others voiced their opposition, and still a few more sat quietly by hoping and praying for the best.  By the time the surgery grew close, I had heard it all - and of course the stories that stuck with me were the worst case scenarios.  I had to work hard to keep the "what ifs" out of my head - and my nerves caved in the night before the surgery.  It took forever to fall asleep, but eventually I did drift off to what I thought would be a peaceful rest. body had other ideas in mind.

Early in the morning of October 26 (the day of our C-Section) - I began having contractions on my own.  Although we're not sure, we believe they were simply very early labor contractions - they came every 25-27 minutes.  After a conversation with our OB, we decided to stick with the planned C-Section unless I progressed too far.  We spent the day resting at home and sometime in the early afternoon headed into the hospital to check in.

The entire experience was definitely not what I envisioned.  Upon arrival, we were shown to a triage area where I was changed into a hospital gown and hooked to a couple of monitors.  I was observed for an hour or so, and then the moment came.  The nurse handed Jason a pair of scrubs asked him to change and I was wheeled off to the OR to be prepped for surgery.  The nurse promised Jason would join me before the surgery began.

The OR had the typical sterile look and feel.  I think the thing that surprised me the most about the entire process is how long it took to prep me for the surgery.  In my head, I thought I'd enter the room, get numb, and boom they'd start the procedure.  In actuality, it took probably a good 20-30 minutes of various activities before the procedure actually got underway.  I knew we were about to begin when I looked over my left shoulder and saw Jason walk in all scrubbed up!  That's the point that my eyes actually misted over - the minute we waited for was almost here.

As the team worked on the other side of the curtain, Jason was a pro.  He sat right at my head holding my hand and keeping me engaged in conversation.  I honestly couldn't tell you a single thing he said, but I remember I wasn't worried about the surgery one bit.  After what seemed like just a few minutes (but was realistically a bit longer) - the nurse told me I'd feel a lot of pressure, and if Jason wanted to look, now would be the time.  Jason looked at me, and peeked over the curtain.  The look on his face was completely priceless - it said "I don't want to look, but I can't help myself" - and as soon as he peeked, his face changed.  His eyes misted over and he turned back to me and said "you did good, babe".  She wasn't crying (and didn't start for what - at the time - seemed like forever) - so I just sat there repeating "she's out?" over and again.

Since I had a C-Section, I had to spend 4 nights in the hospital.  My stay was rather uneventful - I was able to walk the next day, and seemed to heal rather quickly.  Zoey had a bit of jaundice, which is common for breastfed babies.  The nurses advised putting her under special lights and keeping her in the nursery (except for feedings) to help her recover.  It worked wonders for her, but I was a basket case the entire time.  I couldn't speak to anyone, or even visit the nursery without breaking into tears!

Friday, Zoey will be 1 month old...and with her age came a question from one of my closest friends (and mother of 2) - Amy.  She asked me if I could remember what life felt like before Zoey.  It's a question I keep asking myself - and I get the same response each time.  I remember all of the events from my pre-Mommy days; but I couldn't picture a life without my little girl.  I love her with all my heart...and it's absolutely true what they say: it's all worth it.

Friday, October 15, 2010

In My Daughter's Eyes

Music is so special to me...most of my favorite songs are close to my heart because of a special memory or story behind them.  Shortly after Jason & I learned we were having a baby, I started looking around for a song that helped explain my feelings.  I finally found one that got me a little choked up - it's "In My Daughter's Eyes" by Martina McBride. 

With Zoey's birth just a little over a week away, I can't listen to this song anymore without a box of kleenex near by.  I challenge you to listen to this song and not get a little choked up. 

In My Daughter's Eyes by Martina McBride
In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

In my daughter's eyes everyone is equal
Darkness turns to light and the world is at peace
This miracle God gave to me
Gives me stregnth when I'm weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes I can see the future
A reflection of who I am and what will be
And though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see
How happy she made me
For I'll be there
In my daughter's eyes

Thursday, October 14, 2010

We Have a Delivery Date!

From the onset of our pregnancy, our little Zoey has been...well, not so little.  In the beginning, it was simply me noticing I could feel a hard lump (which I assumed was my uterus) a little higher than where my books suggested I'd find it.  Then, our first ultrasound, at 19 weeks and 2 days, showed our little girl was thriving quite well.  So well, in fact, that she appeared to be almost 21 weeks.  When the 3rd trimester came, we began doing belly measurements - and surprise - guess what?  My belly continued to measure 2-3 weeks ahead of schedule.  Throughout the rest of the pregnancy, every ultrasound and measurement was consistent - Zoey was estimated to be between 2-3 weeks further than I actually was.

Our OB, Dr. Piness, took every precaution.  I was screened three times for Gestational Diabetes, just to be safe.  The first test was a one hour glucose test at 18 weeks, which I passed with flying colors.  The second test was another one hour glucose test at 28 weeks, which I failed miserably.  When I redid the test with a more intensive fasting 3-hour glucose test a few days later, the results came back perfectly normal.  No Gestational Diabetes for me.

During a routine prenatal visit in September, Dr. Piness mentioned our baby is consistently measuring ahead of schedule, and at 33 weeks, was considered in the 92nd percentile for growth.  That means, at 33 weeks pregnant, my baby was bigger than 92% of other babies.  She admitted she normally didn't like to recommend scheduling a C-Section without trying natural labor first, but in our case - she wanted me to be open to the idea of one, simply because she had a gut feeling this baby was going to get too big.  I told her I'd talk it over with Jason and give it some thought.

For the first few days, as is my nature to do, I stressed about the choice.  Jason & I talked it over, not just amongst ourselves, but reached out to family and friends for their opinions as well.  I even went so far as to talk to a few nurses that knew Dr. Piness personally and get their opinions.  Their response struck me the hardest.  The couple I spoke to said Dr. Piness had a fairly conservative C-Section rate, and typically does not schedule a C-Section simply because a baby's big.  They said they normally wouldn't consider a C-Section, but if Dr. Piness recommended it, they would at least seriously consider it.  That statement alone really showed me how highly the Labor & Delivery nurses valued Dr. Piness & her decisions. made me wonder how right on the money she may be.  Guess those little plaques in her office naming her OB of the year for the DC area weren't just for show.

I prayed a little more about my decision and eventually decided to go with my gut.  Why did we choose Dr. Piness in the first place?  Because she was highly recommended, really cares about her patients, and definitely knows what she's talking about.  In the end, we decided it was best to leave the medical decisions up to the professional.  And, hey - given Justice's needs and our lack of alternate care for him, if we do end up needing a C-Section, it will definitely make our lives easier!

Today, we had our 37 week ultrasound.  And, just as expected, little Zoey is measuring big.  According to the ultrasound tech (who's face was rather comical when she looked at the results) - Zoey's legs and head are measuring at 39 weeks, and her torso is measuring off the charts.  Her estimated current weight is 9 pounds 5 ounces.  And I still have 3 weeks before my delivery date!

Immediately after the ultrasound, I had a prenatal appointment.  I wasn't shocked when Dr. Piness announced her preference for a primary C-Section, based on the results of the ultrasound.  Jason & I had already made our decision, so I didn't give her much of a fuss.  We did reach a nice compromise, though.  Since her concern is simply how large Zoey will be at the very end of the pregnancy (not how big she is now), she was quite agreeable to a natural delivery should I go into labor before the C-Section.  In fact, she said she would even check me on the date of the C-Section, and if my body was far enough along that she felt we could possibly avoid a C-Section, she would let me give it a shot...if I wanted.  All in all, not a bad compromise.  I honestly feel like Dr. Piness is recommending the C-Section for our benefit, not hers.

Now, we're just left counting down the days until October 26, when we'll finally get to see our little girl.  This is something I've wanted for years, and I can't believe I'm less than 2 weeks away from holding my little baby girl.

Friday, October 1, 2010

I Dreamed a Little Dream...

When you become pregnant, you experience a lot of changes in your body - and, if it's your first child, a lot of these symptoms catch you by surprise!  One change I find particularly interesting are my dreams - not only are they more frequent, but...when I do have them...they're much more vivid.  That means nightmares are much more scary, and those feel good dreams make you feel really good.

I remember the first vivid dream (or, I should say, dreams) I had after Zoey's conception.  Jason & I had yet to find out if we were having a boy or a girl, and for the two nights prior to our ultrasound, I dreamt of our baby.  The first night, I gave birth to a little boy who looked a lot like Jason.  The next night, I gave birth to a little girl who looked a lot like porcelain doll with hair to match my Grandma Riewe's (curly strawberry blonde).

Months have passed with lots of vivid dreams in between, but somehow none of them centered around Zoey.  Until last night...

Last night I dreamt of Zoey's arrival, with a bit of a weird twist.  I was admitted to the hospital for a C-Section and Zoey had just been delivered.  The nursing staff quickly whisked her away to clean her and swaddle her before returning to my bedside.  When they did, she was bundled up tight and looked quite content...I remember she had the biggest brown eyes I'd ever seen.  Jason & I studied her for a while - and she literally looked as though she had been pieced together from bits of each of us.  Her hair, for instance, contained patches of Jason's hair and my own.  Her complexion was his, but her eyes were mine.  And...she was a big baby.  The nurse that brought her to me told me she was the biggest baby she'd ever seen - she weighed 12 1/2 pounds.  And, was almost as tall as a 6 month old!  She said Zoey looked more like a toddler than an infant!

A couple hours later, I was told because of Zoey's size, we were allowed to leave the hospital for the day - as long as I promised to return that night for overnight observation.  So, Zoey & I packed up in the car and headed to my sister, Alicia's house.  Apparently I was able to make the 500 mile drive in only 10 minutes.  Amazing.  When we got there, I tried several times throughout the day to feed her - both by breast & bottle - and Zoey would have NONE of it.  Each time I offered, she would scream at the top of her lungs, push away from the meal, and flail her limbs.  Full out tantrum.  Eventually, she won - I gave up since I had no clue what to do!  I told myself I'd ask for help from the nurses when I returned.

When I got back to the hospital, a large group of nurses greeted me as they whisked Zoey away to the nursery.  I went to my room, expecting to see her after a short exam.  Three hours later, Zoey hadn't returned, so I began roaming the halls wondering where she'd gone.  She was missing entirely from the nursery, so I made my way to the nursing office.  I stood patiently at the door, where a dozen nurses laughed and joked.  One looked at me and said "it's the mom that put her baby on a diet".  Another turned around to look at me and said "you shouldn't be here" and slammed the door in my face.  I was absolutely confused, and walked around looking for a doctor.

Eventually, I ended up in my bedroom and a doctor stopped by.  The doc told me that Zoey had lost an entire pound during the day, and it was a huge concern.  She had been wheeled off to the NICU where they were closely watching her.  He asked why I put her on a diet - and I said I hadn't, that she didn't want to eat!  The Doctor sent in a lactation consultant to answer my breastfeeding questions...but she quickly told me that I wouldn't be able to breastfeed (without a pump) because Zoey was teething.

...and that's when I woke up!

Reflecting back on this dream, I think all the concerns of a first-time mom are starting to seep into my head.  Will I be able to breastfeed?  Will Zoey be healthy?  What will she look like?  Will I be a good mom?  I'm only a few days shy of entering my 9th month, it's amazing I've not had these dreams before!

And then what I did in my dazed and confused state was hysterical...if you weren't Jason.  I wanted to tell him about my dream and see what he made of it.  So, I called his cell and he answered.  The first words out of my mouth (mind you - I'm 9 months pregnant) were "I need your help".  He panicked immediately - and I had to explain that I just wanted to tell him about my dream.  We talked for a few minutes, but by the time we hung up, I had a task: learn how to communicate via phone without worrying the other party.  The first lesson?  In my current condition, do not ever start a phrase with "I think it's time..." or "I need your help!".  Poor Jason!!!