Saturday, August 20, 2011

Natalie's story.

Natalie was born at 11:30pm, April 21st of 2007 in our home state of Maryland and to be even specific, she was born in Annapolis. Little did we know that this adorable, squishy, newborn had an undetected severe heart defect when we took her home. A heart murmur, like with most brand new babies, was detected at birth but nothing was ever pushed further and we went on our way home 24 hours after Natalies' birth.
Her color was rosy and pink. The occasional purple color would pop up on her feet, but we thought that since we could tell that she was going to have really fair skin like her daddy, we didn't worry.
A few days after birth Natalie had her very first pediatric well checkup and the murmur was super loud. Armed with our referral we were able to book an appointment with a specialist at Johns Hopkins Hospital for May 8th, 2007- 17 days after her being born.
Hearing the diagnosis was and still is the hardest thing I've ever had to do. You definitely don't forget it. Hearing the words "Tricuspid Atresia, Atrial Septal Defect, and Ventricular Septal Defect" were like words of a whole other language for us. I remember looking at diagrams, reading all sorts of articles and stories online, and just feeling totally and completely overwhelmed and terrified.
Thankfully, the pediatric cardiologist had fantastic bedside manners and was very compassionate and took his time explaining everything.
I sat there holding Natalie, crying, just wanting to go home that day of May 8th. I kept thinking "there has to be something else other than having to open her chest for help this... there has to be". I also thought about what her life was going to be like from this point on. Will she survive? How did this happen? What did I do to cause this? Oh my god........

Finding a way to stay strong for her (we had to), we all fed off of each other's positivity and comfort. Natalie constantly showed us how tough she was and we kept getting more comfortable with her prognosis and surgeries. Right before he first heart catheterization to prepare for her first open heart surgery called the "bi-directional Glenn Shunt" for October, she began to go through the pre-stages of heart failure. You know things are scary when the cath doctor actually tells you that they need to rush surgery or your child will die very very soon. More words no parent should ever hear.
Her oxygen went from the first months of life being in the mid to low 90s to the mid-70s with a constant shade of gray skin.
About a week after her late-September 2007 heart cath, a 5 month old Natalie had her first shunt on October 1st, 2007 at Hopkins. We later find out that this is the same exact day that The Children's Hospital of Denver opens (where she receives care now).  She had her surgery on a Monday and went home that Friday. She healed beautifully with zero complications.
She proved how well she could handle her own by having her Fontan procedure completed on January 12th, 2010 at The Children's Hospital of Denver and leaving the hospital 6 days later, beating the hospital's record by 1 day.
Again, zero complications.
We know for sure that the heart catheterization she had in October of 2009 at TCHD played a humungous role in helping her body and heart prepare for her Fontan. That was her 2nd heart cath ever, and the one that actually caught 3 collateral veins growing in her mammary glands. Those were coiled with platinum. Which does make Natalie even more priceless now. ; )

Aside from some gross motor delays with her leg muscles (due to a very paranoid mommy post-surgeries), Natalie never had any complications from her procedures. There were a few scary moments of her recovery with the Fontan, but everything always evened itself out: blood pressure dropping way too low all the way to blood in her urine. But everything always fixed itself. Her body always seemed to know exactly what to do. To a T.
This always has doctors and surgeons even marvel at her recovery and heart function. As her pediatric cardiologist Dr. Ravekes from Hopkins has said (and I always quote to the point of annoyance) "Natalie's body is made for this".

Natalie is now just like any other 4 year old. Smart, hilarious, in her "mine mine mine" stage, outgoing, sweet, sour, and is the epitome of GIRL. She is tough.. so tough that she's already giving us signs that she may one day become a veterinarian or some other type of doctor. She's becoming increasingly more aware of all of her chest scars and loves to talk about her "crazy heart" (as she calls it). She only takes a baby aspirin daily. She is feisty, full of life, and full of energy. This kid is going places in life and her half of a heart will never stop her. 
She's our dreamer.....

THEN...  10-1-07
AND NOW...  8-17-11


connie and adam said...

Thank you for sharing her story. My son Adam also has the same heart condition as hers. He is scheduled for his fontan when he is 4 to 6 years old. He had the Glenn surgery which left him out of breath doing little things. Did she ever have that problem if so did the fontan fix it? Here is Adam's blog

allie :^) said...

hey!!! i didn't know you kept a i can follow you too! :) natalie and my q sound so much alike. if you didn't see those scars one wouldn't guess at either of them being heart patients! q definitely has more delays than natalie...but we'll catch up someday! :) would love to stay in touch with you via email. :) xoxo allie. :) HEART HUGS. ;)

Dawn B said...

Hey Connie! After the Fontan she was a like a new kid once healed. I noticed an even bigger difference a few months before her Fontan when she had some collaterals closed. Your little guy is so cute. How's he doing now? Any improvement with breathing or is it the same?? Allie! I'm so happy we can blog buddies. These children amaze me. Every single one of them. I think about that a there's no way I could handle going through what they go through. I think it makes them very wise kids, for sure. xoxoxo