Friday, September 30, 2011

Oh my...that's why

Two years ago today...this was my daughter right after her Norwood.  We could see her little heart beating under the Gortex bandage. I so wish no parent ever had to see their baby look like this.
My little girl today.  I am so happy we didn't listen to the 'experts' two years ago!
I have been overly emotional this week.  It happens sometimes and usually I can figure out why.  This luck.  Every little thing has triggered an unusually easy crying spell for me.  Now...I do cry easily a lot of the time, but this week really has been different...and more often.  Of course, I finally figured it out.  The past few weeks were the worst of my entire life.  Two years ago today Hope had her Norwood...that was actually one of the best days because someone (our hero...Dr. Mavroudis) took the chance on Hope and did her surgery.  A week before we were told that Hope was not a candidate for the Norwood and we should take her home to die.  Even as I am writing this I can feel everything from that day...the pain, anguish, hurt, and just plain disbelief.  It was a shock and totally unexpected.  She was scheduled for surgery and then they canceled it.  We didn't know what to so many parents.  We trusted our doctors.  We trusted everyone.  We thought they knew best.  We are MUCH smarter now.  We trust...just not blindly.  We have no problem getting second, third, one hundred opinions.  We know that our daughter's life is worth everything.  She is a fighter and so are we.  I will continue to try and find anyone that is given the same advice...take your baby home to die...and have them get other opinions.  I don't think that is something ANY doctor or hospital should ever tell any parent.  There should be rules against this...they should inform parents about options, other hospitals, other doctors...rather than telling them there is no hope.  Not once were we told to get to another hospital...that another surgeon might be willing to help.  Ughhh...I hate writing about makes me really mad nowadays.  It used to make me sad, but I know of two other babies that were at the same hospital that the parents were told the exact same information.  Both families transferred their babies to other hospitals.  One baby did not make it, but got to spend his last days at home with his family and the parents feel like at least they know for sure that their baby would not make it...because they got another opinion.  They won't have to think about the 'what-ifs' that I still think about way too often.  The other family has a beautiful son and he is now at home...AMAZING!  Sadly, I think about all the other families that I don't know that may get the same news.  I'm sure the doctors there would never give them my phone number.  I find them accidentally.  And sadly, I know I can't find all of them.  I worry that some parent will have the 'what-if' thoughts after they have taken their baby home to die. 

Sorry for the depressing post.  I told you ahead of time that I was overly emotional.  Two years ago today, my daughter was saved by the most brilliant surgeon ever...Dr. Mavroudis is and always will be our HERO!  He may not be from some big, fancy, number 1 rated hospital...but he is the BEST!!!

Tuesday, September 20, 2011

Heart Walk and Birthday Party

This weekend was just plain crazy.  I was the co-chair for the Northern Ohio Congenital Heart Walk...benefiting The Children's Heart Foundation and the Adult Congenital Heart Association.  This year was the 1st year for the Walk...and definitely NOT the last year.  It was an amazing day with many wonderful families.  I cannot thank everyone that came out and walked was the best day.  We had over 20 teams and around 300 people all walking for congenital heart defect awareness.  Every single person there represented the many people that are affected by someone with a congenital heart defect.  Our goal for the Walk was $10,000...we raised almost $40,000...totally blowing our goal out of the water.  This was all thanks to the many families and friends that raised money, awareness, and support.

Here are some pictures of our amazing day:

Our MANY walkers raising awareness for CHDs
Jerry and Hope with Dora
The Heart Garden...for our survivors and the angels watching over them.
Sunday was another big day at our house.  We celebrated Hope's 2nd Birthday.  It was an amazing day with family and friends and a whole lot of fun.  Food was all ordered because I did not have the time or energy to make anything, but it was good food.  Hope got her first tricycle...of course she doesn't reach the pedals.  She also got a lot of clothes which is always good around here.  She is sure to wear them because it takes her a long time to grow out of everything.  This means she wears out all of her clothes before she moves into the next size.  She wears anything and everything we get from family and friends.  We never have clothes that were not different than the boys. 

Here are some pictures from the big day:

Her beautiful hair was styled by her Aunt Danielle...I really need to learn how to do her hair...she is so darn cute when it is done!
She will be able to ride it someday...hopefully soon!
My little princess!

Wednesday, September 14, 2011

Happy 2nd Birthday Princess

WOW!  That word is the one description for today.  Hope is 2 years old today.  There were so many people that never thought this day would happen.  There are so many people that have seen so many miracle in 2 years.  This is a day for a huge celebration...although we will have a little one today, another one on Sunday with family and friends.  Today is a day for reflection, but not too much.  I don't want to spend any time at all thinking about Hope's birth or the almost two weeks following.  There is time for that is for thinking of all the awesomeness that is Hope.  She is amazing...she is beautiful...she is full of life!  She is also a typical 2 year old...running and playing...talking like crazy (and only we can understand it)...and throwing tantrums like no one's business.  She is my tantrum thrower like you wouldn't believe.  She can work herself up to the point she throws is gross and so hard to watch.  She stomps her feet (which is actually quite funny), but watch out for the tears...they lead up to the throwing up. 

Now to share an amazing poem from the magnificent Stephanie Husted (I changed it because she has a son, but she expresses my feelings so much more eloquently than I ever could):

Happy 2nd Birthday

Happy birthday Hope
(I can't belive your two!)
Now climb right into mama's lap
I have advice for you.

I think that you will always know
Your special in some way
Someone may see you bear a scar
As your outside at play.

Don't ever be embarrased by
The special heart you claim
Remember you are loved so much
(God calls you by your name)

Don't let this life say "no you can't"
(There's many things to do)
I know you can do anything
That you set your mind to.

Stop...enjoy the little things
(the best things remain free)
Seek your dreams with diligence
And love your family.

Make time to admire God's wonders
And always remember to smile
Laugh sometimes at silly things
Learn how to face a trial.

Believe there is a purpose
For all things that we face
Start each day with hope anew
And learn to fall on grace.

I'm getting a little ahead of myself
(as mommy's tend to do)
I'll strive to teach you all these things
(for now your only two!)

~Stephanie Husted