My Birthday Wish

Balloons in Bed - Best Morning Ever!

Hi everyone,

It's my birthday today.  While most kiddos my age might be wishing for a doll or a truck, I'm hoping you will support an organization that is very dear to my mended heart.  An organization that reached out to me exactly 366 days ago (Leap Year, people) and will continue to support me through my childhood and adult years.  An organization that, in conjunction with my family, friends & educators, will help me achieve my full potential and will give me the best opportunity to lead an amazing and productive life.  Please read the following letter and consider supporting the Down Syndrome Guild of Kansas City by visiting www.stepupfordownsyndromekc.org and joining or donating to my team, Reese's Rebels.  Thanks for making my birthday wish come true.

Love,
Reese

 

 

 

Have a Great Day!

 

 

 

New Beginnings

"Plan for around 2 weeks in the hospital," warned Reese's cardiologist before surgery.  "Maybe even longer if she has any complications."  In true Reese fashion, she decided to buck authority and ditched the hospital in 5 days.

Although her progress has been remarkable, her journey has not been without a few speed bumps.  She developed a UTI which is not uncommon after having a catheter in place for a few days.  What was uncommon was the bacteria that caused the infection which justified a nephrology consult and a renal ultrasound.  Her team was worried that something else might be going on with her kidneys.  Luckily, all is well with her kidneys & surrounding structures so this UTI can be chalked up to nasty germs floating around the PICU.  Darn microbes. 

She also developed a little wound on her nose from the pressure the breathing tube placed on it while she was intubated.  A wound care nurse evaluated her within hours of extubation & we are treating the wound with honey.  Yep, honey.  This sticky stuff has antimicrobial properties, keeps the wound moist & debrides yucky tissue.  And it tastes good.

We got our walking papers on Monday & spent half the day packing up our goodies.  We entered the hospital with a baby & a bag and left with 2 wagons full of stuff. 

I am in a state of disbelief.  We waited so long for this day, for her heart to be fixed, and now that we're home it feels surreal.  Life before surgery revolved around keeping her healthy and packing on the pounds.  It will take some time to decompress, to finally be able to really exhale, but in the meantime we are just soaking up the good stuff and toasting new beginnings...

Welcome home, Punks!!

Bye Bye, PICU!

As much as I loved the staff and care we received in the PICU, I was not the least bit sad to hear we were leaving.  We bid them farewell this afternoon.

We've moved to the telemetry floor where Reese's heart rate & oxygen levels will still be monitored continuously.  We have a private room with a comfortable cot and attached bathroom.  Mama's happy.

It felt like Christmas in April today with presents galore for Reese and her family.  We are beyond blessed to have the most generous and most caring family and friends around. 

Many thanks to my RMC pals - my first healthy bit of food in 4 days

Aunt Sarah is making a strong bid for the "favorite aunt" title

We have a habit of giving nicknames to rooms around our house.  Reagan's room has been dubbed "The Pig Sty" and Reese's room has been declared "The Jungle".  Grandpa and Grandma Wallace dropped off the perfect accessories for each of their rooms. 

Now if I could just find some bats and stalactites to decorate the girls' playroom, a.k.a. "The Cave".

Reese is obviously making wonderful progress.  She's snoozing away in her own PJs and her arsenal of medical goodies has been whittled down to one peripheral IV.  I look at pictures taken just 3 days ago and can't believe it's the same baby.   



Toobie Free

Reese has a funny sense of humor.  Yesterday she was on a healthy dose of Versed (sedative) and Fentanyl (narcotic) and still managed to wiggle around enough to warrant adding Precedex (another sedative) to the mix.  This morning the nurse turned off every bit of her sedation & pain medication in preparation to get the breathing tube out.  Instead of waking up to prove she could breathe on her own, she immediately decided it was time to sleep.  So much for following the rules, Reese.  You're a lot like your sister.

Five hours later, she finally perked up enough to lose the breathing tube.



Toobie in

Toobie out

She was not satisfied to stop there and a whole slew of equipment was lost in the wake.  She is now sans arterial line, foley catheter, pacemaker wires and wrist restraints.  Her latest achievement was to chuck all supplemental oxygen.  It's been a good day.

  Daddy's Girl

This chick is tough as nails.  She hasn't had a drop of pain medicine all day and still insists on doing her Jane Fonda.  She's even wearing the appropriate attire - gotta love a baby in legwarmers.



I'm actually kind of amazed at her progress even though I know better than to underestimate her.  We call her Ali.  She was born with gloves on and continues to fight through every obstacle she encounters.  You are kicking this surgery's butt, sista.  Keep up the good work.

Bad Behavior

Last night our girl decided she didn't want her arterial line anymore so she removed it.  What she didn't realize was that arterial lines are nonnegotiable following OHS and one was promptly reinserted.  Her feisty disposition and bad decision making bought her some of these:

Yep, baby restraints




She was also started on another sedative that will hopefully keep her a bit calmer.  I love CMH - they are not stingy with their drugs.  Reese has been snoozing away all day.  Now her IV cocktail looks something like this:

She was starting to get a little puffy from the fluid she received in the OR and during the first few hours of her PICU stay.  So now she's getting some medication to jump start her kidneys & help her pee.  It's working:

We've had a good day.  They've been gradually weaning the support provided by the breathing machine throughout the day and she's tolerating it well.  There's a small chance she could lose the breathing tube tonight but it gets tricky with the amount of sedation she's requiring.  I have a feeling they will keep it in overnight, let her get 12 more hours of good rest and then try pulling it in the morning.  Either way, she's stable, she's comfortable and we're pleased as punch with her progress.

In the meantime, our princess got a pedicure.  Her little piggies were just begging for some polish & our awesome nurse delivered:

Naked nails

Pretty in pink



Now if you'll excuse me, I'll get back to reading "The Hunger Games". 

She's Pink!!

Our girl is pink, a rosy beautiful shade of pink.  Amidst the sea of wires and tubes, this is the first thing I noticed when we were finally allowed to see her following surgery.  I can't peel my eyes away from her rosy cheeks.  It's amazing what good circulation can do for the complexion.

I expected to have a minor meltdown when reunited with her in the PICU.  Instead I was elated.  Ask Ben.  I was grinning from ear to ear, felt downright giddy.  She rocked the surgery & she is rocking recovery.  That's not just a proud mama gloating - her team agrees she's a rockstar. 

I want to adopt her nurse.  She's awesome.  And she's doing a great job managing these bad boys:

I surprised myself by keeping it together for most of the day.  I lost it during the hand-off before surgery.  And I lost it when these balloons & bear were delivered.  I love my PC girls.

All in all, we couldn't be happier.  And we couldn't be more grateful for modern medicine and for skilled hands that mend broken hearts.  Happy Heart Day, Punks!!

Heartbroken No More

Today's the day I've been anxiously awaiting and fearfully dreading for 7 months. Exactly 222 days ago Ben and I tearfully sat in the NICU as a pediatric cardiologist informed us of Reese's congenital heart defect and the need for open heart surgery. It's funny how your mind works under periods of immense stress. Instead of focusing on words like "atrioventricular canal" and "congestive heart failure", I was making a mental note of our cardiologist's socks. They were covered in hearts, itty bitty multicolored hearts. How appropriate, I thought, a heart doctor wearing heart socks. Everyone has their own way of coping & apparently mine is to analyze the clothing choices of professionals delivering unwanted news. To each his own.

Over the past 222 days, a day hasn't passed when a sentence didn't begin with "After the surgery" or "When Reese gets her heart fixed". To say we've been living in a perpetual state of limbo is an understatement. Today we handed our precious girl over to a bunch of strangers, albeit highly educated & skilled strangers, but strangers nonetheless. Those strangers have been down this road hundreds of times, taken hundreds of kids from the arms of terrified parents and made promises of a joyful reunion on the other side. I couldn't help but think about the times those promises were broken, when the reunion wasn't joyful, when there was no reunion at all. The mere thought causes me physical pain and I immediately forced myself to go to a happier place. A place where Reese isn't struggling to breathe, a place where the simple act of eating is no longer comparable to running a marathon, a place where we can play & roughhouse without worrying about the stress on her tiny, fractured heart.

The wait isn't over. I am sitting here watching "American Guns" and doing anything to keep my mind occupied so I don't dwell on the reality of the situation. The reality is my daughter is laying on an operating table surrounded by masked faces and metal instruments. Her heart has been stopped intentionally so delicate repairs can be made. I am overwhelmed when I picture this scenario so I will get back to playing WWF and Scramble. I will continue to pray for Dr. Obrien's hands to perform miracles and I will continue to be thankful for all of you who are lifting our girl up in your thoughts. Soon she will be heartbroken no more.