Thursday, November 13, 2014

Link to outcomes

STS Congenital Heart Surgery public reporting

Advocate Children's Hospital- Oak Lawn, IL

All Children’s Heart Institute- St. Petersburg, FL

Ann and Robert H. Lurie Children's Hospital of Chicago- Chicago, IL

Arizona Pediatric Cardiology (data from Phoenix Children's Hospital)

Blair E. Batson Hospital for Children (University of Mississippi Medical Center) - Jackson, MS

Boston Children’s Hospital- Boston, MA

Children’s Hospitals and Clinics of Minnesota-

Children's Healthcare of Atlanta- Atlanta, GA

Children's Hospital of Philadelphia, PA

Children's Hospital of Wisconsin- Milwaukee, WI

Children's Mercy Hospitals and Clinics - Kansas City, MO

Cleveland Clinic Children’s Hospital- Ohio

Inova Fairfax Hospital for Children- Falls Church, VA

Le Bonheur Children's Hospital – Memphis, TN

Medical University of South Carolina- Charleston, SC

Miami Children's Hospital, FL

Nationwide Children's Hospital- Columbus, OH

New York Presbyterian- Morgan Stanley Children's Hospital, NY

Penn State Hershey Children's Hospital- Hershey, PA

Primary Children's Hospital- Salt Lake City, UT

Seattle Children's Hospital, WA

Texas Children’s Hospital- Houston, TX

The Children's Hospital of Alabama- Birmingham, AL

University of Maryland Children's Hospital- Baltimore, MD

Children's National Medical Center- Washington D.C.

UF Health Congenital Heart Center (University of Florida)- Gainesville, FL

CNN's chart of what types of data centers are sharing


Wednesday, October 15, 2014


I dont normally have a desire to share anything I write in my personal journals.  Today was different.   Maybe it is the non specific element in which I wrote it that I don't mind.   Maybe some random person needs to stumble upon it.  Maybe its my way of saying it out loud, to own it.  Maybe there just isn't any reason at all. Here it goes:

Now I know my true hearts desire.  For so long it's been aching but I did not understand the emptiness.   I nurtured the emptiness with my ignorance, denial, pride, and my negativity.   The way I have been cutting myself free begins with forgiveness.   Forgiveness of others and forgiveness of myself.  I am capable of trusting the Universe.  I need to make that decision over and over again because my habit of distrusting has been so burnt into my character.   My unresolved issues and grief are scar tissue that I have to work out and it is an ongoing effort.   It's hard and  sometimes it gets messy depending on which issue has my attention.  But the reward is peace and that is what I nurture now. 

Wednesday, September 10, 2014


She can walk, and she loves to...

Sometimes she wants to hold my hand, but not always.
She doesn't like me running ahead, but it's OK by her if she gets ahead of me. ♥
Big sisters make her happy
She knows their names, but she can't say it...yet.
She can say:  Mom, Daddy, What, Here, Stop, Hi, Bye, No, Yeah, Sorry, Wow, Doctor, Dog, Eat
She can laugh, and she loves to.
She listens to me, usually.
"Stay there" I instructed, and she never moved. Not even 200 pictures later.  She stared at the environment, watching it contently.  And I watched her. 
I saw strength, beauty, courage, resilience, and I saw that all of my dreams and wishes so far came true.  My fighter is alive and she's living
I want to hug everyone that ever touched her, saved her and helped her. 
I know her fight will never be over, and neither will mine.  But it's so nice to just be Mom and not in addition to:  advocate, honorable nurse, crazy researcher... just Mom was overdue and I have been trying to make the most of it!
I'm grateful.  Thank you ♥
I haven't updated much about Cardiology because I just needed to put it all into the Doctor's hands (he's got her back) and maybe I'm afraid if I bother writing details about it I will fall back into old patterns where I am overthinking everything and stressing the F out.  So with that said, this is the best update I have for you...Cecilia was able to stop blood draws, but not X-rays, and we went from appointments being every 3-4 weeks to every 6 weeks.  That was a decent step up while it lasted but we are going back to how it was for at least the last and next appointment because of an X-ray she had recently.  I'm pretty sure that everything is going to improve next check up.  I really was in disbelief that her last 2 X-ray's have shown a trending step back.  Cecilia acts like she is doing great.  That's what matters to me. 
Here's a bonus sad looking picture I gave a makeover to:

Thursday, August 28, 2014

The Super Sibling Celebration


The "Baltimore Area Heart Moms"  is a private support group on Facebook, founded by my friend Jessica Park, for the Baltimore heart community.  Despite the groups title, we have members from all over Maryland and it's neighboring states.  94 members strong to be exact, and counting.  Our children receive local and/or surgical cardiac services from Johns Hopkins, University of Maryland Medical Center, Children's National Medical Center, Penn State Hershey Children's Hospital, Children's Hospital of Philadelphia, and INOVA Fairfax Hospital for Children.  We throw the occasional " ♥Moms Night Out", or other similar themes, and those of us in Anne Arundel County frequently meet for weekly play dates at the park. 

Our very first dinner together.  ♥  Being a part of this community has been so profoundly rewarding for my soul.  We are a family.
One day, Jessica was driving in the car with her step-son, Gage.  Gage informed her that he wished he had a heart defect just like his brother Jeremy.  She told him, Of course you don't!  Why would you think that?  He explained that if he had a heart defect than he could have all of these parties just like Jeremy does.  This is how the Super Sibling Celebration was conceived.  Jessica wanted to create something special for all of our healthy children, so that they could be reminded just how brave they are, too. 
For a long time I have been silently dumbfounded why my daughter Sophia was happy to be diagnosed with her heart defect.  I don't particularly like to talk about it.  I just expected her to be scared, upset, angry...anything but happy.  Her diagnosis was genuine good news to her.  This story with Gage opened my eyes.  Could it be that Sophia thought having a heart defect would make her more important to us?  
Jessica had been planning this special celebration for months.  I like to think fate brought her to Captains Sharing & Caring, the Norman Creek Marina, and all of the other amazing contributors and volunteers.  With their help, the Super Sibling Celebration was able to become more special than she (or any of us) could have ever hoped for.  The children were all gifted T-shirts upon arrival.  There were games and lots of yummy food.  Every favorite treat of children (and adults if you have a sweet tooth like me!) were available.  Even Icing Smiles donated to this party!
my daughter Julia

my daughters Gina and Sophia
Cecilia and her heart friend, Addy
There was a Fire truck and Ambulance that the children could explore, and they could meet those heroes who drive the cool trucks.  No parent wants to make a desperate 911 call  for one of those trucks.  It happens in our heart community.  For some of our Super Siblings, they have known their sister/brother to leave home in one of those trucks... some of them to return home...  and some sadly did not.
Super Sibling Emoree, big sister to HLHS Angel Anya- posing with my daughter Anastasia in our exciting boat ride.
There were several boats available to take the families out on the water.  The super siblings had a chance to be the Captain of their boat.  My children are still talking about their boat rides.  We rode in a beautiful 3 story boat owned by a very sweet couple named John and Deena.  Right now my girls are playing a new imagination "boat  ride" right on our couch! 
It is so hard being the sibling of someone with medical needs, and it's very scary when those conditions are life threatening.  To my healthy children:
You are no more or less important to me than Cecilia. 
I admire YOUR strength; your bravery, forgiveness, compassion, hope, and support.
You deserved this party as a reminder of just how very special you are too. 
You've made so many sacrifices and compromises to favor the decisions that were safest for your sister.  For that Thanksgiving and Christmas I missed with you because I was living at the hospital with Cecilia.  And for every other holiday, and the non holidays I missed because EVERY day and night I get to spend with you matters to me.  For all of the days that turned into weeks that sometimes turned into months.  Where I tried my best to give you just as much attention as I gave your sister...but, let's face it.  She was very sick and I was in survival mode to do my part to keep her alive.   You still smiled even when your feelings were hurt, and you helped me with my chores without me asking you to.  For that time you tearfully confessed to me, "I didn't know if I had a Mommy anymore" upon my homecoming with Cecilia after another complicated surgery.  That one, that memory of your face and the true fear and relief you expressed, it haunts me...
You deserved this party.  I'm so grateful you enjoyed yourself and your experience.  You felt special.  You are special.  I love you.

Tuesday, August 12, 2014

The happier part

I wanted to share a lot of the pictures of our family from the summer, starting after Cecilia's early June discharge.  You know, the happier part of our life. 

Here, up first, is the official discharge selfie


our puppy, Twilight
^first cheerleading practice^
My girls are on 2 different teams.  They have practice 3x a week, but not always on the same we go cheerleading 5 nights a week.  We're all having a lot of fun with it!