Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Thursday, February 7, 2013

Day 7: MEET CECILIA and CANNON

Today is the kick off for Congenital Heart Awareness week!!!  And what a better way to start then with two super cute HLHS babies!!  Cecilia is Xavier's newest girlfriend....I have gotten to know and love her and her mommy very much.  Mr. Cannon will steal your heart at one glance...his story will inspire!   These babies are 1 in 100...but 1 in a million to me!!!  



MEET CECILIA!!!



This time last year was a dark time for me.  February changed my life forever.  I was pregnant with my 5th daughter and she was missing some of her heart.  I was angry at the Universe, and at myself.  I was devastated.  I felt this incredible burden of guilt that I did not grow my baby correctly.  And she has so many obstacles to face and so much innocence will be stolen from her.  It was torture imagining what we were facing, knowing I could not fix it.  My February this year is not quite the black hole as it was at her diagnosis.  I am able to reflect on her journey so far, and marinate in the fulfillment received from the relationships I have made through this new life...as a Heart Mom in the CHD community...and be proud to know the countless mothers and their children whom have touched my life.  We will keep on rooting for all of you, and we will pray and mourn with you too.  Black heart (cards)  



Cecilia Celine Vinje was born June 29, 2012 at University of Maryland in Baltimore, with Hypoplastic Left Heart Syndrome (HLHS).  She went into respiratory failure at around 12 hours old and required Ventilation support, and she was on a lot of medicine to keep her stable before surgery.  She had her first open heart surgery, the Norwood,  on July 3, 2012.  Her Aorta was the worst part about her heart, because it was severely hypoplastic (1.5mm).  Cecilia was tricky.  She was stubborn.  She was extubated just in time to celebrate her 1 month old birthday and be held by Mommy.  She suffered withdraw of a Fentanyl tolerance and was on methadone and Ativan until mid August.  This made it very difficult to bond.  She did not want to be touched, it felt like I was making her unhappy.  It was impossible to comfort her.  She had a Gtube placed because she would not drink a bottle, and she had complications recovering afterwards.  It was one of the scariest days of my life, and I thought I was going to lose her.  She also had complications of left vocal cord paralysis, blood stream infections and a DVT (now occluded) left Femoral Artery.  She finally was discharged September 10, 2012...but it wouldnt be long until she was back.  After 3 weeks at home, Cecilia suddenly had a lot of weight loss and required oxygen support.  She went in for a Heart Cath after close to a week at the hospital, and it was discovered that her Sano shunt was narrowed on both ends.  The doctor ballooned this and said it should help her Pulmonary Arteries grow now, and she should not have oxygen de-saturations anymore.  They also discovered that Cecilia's Neoaorta was narrowing at the arch and they ballooned this as well.  Her Tricuspid valve regurgitation, previously Moderate, was improving.  For the first time Cecilia was able to get her food without frequent projectile vomitting.  In fact she did not at all.  But slowly these symptoms returned.  Her vomiting was almost as worse as it was before the Cath, and she was beginning to drop her sats again.  I knew the more she grew, she was also outgrowing her shunt and she would need her next open heart surgery, The Glenn.  She had another Interventional Heart Cath, which ballooned her Aortic Arch again, as well as her Right Pulmonary Artery.  Her Doctors were encouraged that her PA's had grown a little.  A week later Cecilia had the Glenn on December 3, 2012.  She fought an infection on her IJ, a UTI, Chylothorax, and a bad reaction to one of her 3 antibiotics- it made her very sick...also her gut was working the worst it ever had.  Her tricuspid Valve Leak is a sneaky thing, and is slowly getting worse again.  Cecilia finally came home New Years Eve when she was able to tolerate her food again, and I really felt this was a sign that 2013 will be a better year for us all....for Cecilia, that she can begin to live a less intense life...and for her young sisters who have sacrificed so much while my husband and I have been fighting alongside Cecilia the best we could.  Now our family can hopefully have an uneventful wait until the next open heart surgery (Fontan).  My daughter has inspired my heart and reminds me how precious each day with your loved ones are.  "Time" has never been certain with anyone, but when I look at her zipper and her beautiful smile, the concept of "time" is much more a gift. Cecilia can be very feisty, and she can flop from a lover to a fighter so quickly!  The last Echo she had, the tech said she was such a misunderstood soul.  When she is mad she goes to the extreme and makes everybody nervous, and when she is happy her dimples just melt your heart.  But most of the time she is very quiet and just enjoys staring, watching, and observing people.  She has reservations about everyone.  She's just not sure if she can trust you.  But how could you blame her...  




This is where you can support Cecilia on her journey with HLHS:  https://www.facebook.com/CeciliaVinjeAndFriends    OR     http://thevinjefamily.blogspot.com/

<3 Sarah, Mom to Cecilia <3















MEET CANNON!!!








Cannon Ross
My son, Cannon, was diagnosed with Hypoplastic Left Heart Syndrome at my 20 week ultrasound.  The word’s “we can only see half the heart” are words that will stay with me forever.  After many trips to St. Louis to confirm diagnosis, it was confirmed that we would be having a little miracle with half a heart.  Hypoplastic Left Heart Syndrome is a condition where the left ventricle does not fully develop.  In Cannon’s case, his did not develop at all.  Cannon was born at 39 weeks and was a whopping 8lbs 1.9oz.  He had his first open heart surgery, the Norwood, at 5 days old.  At 2 weeks old, they informed us that he needed something to turn around or they feared he would not make it.  After a 3.5 month hospital stay, he was able to come home for 2 months before returning for his second surgery, the Glenn.  For being  10 months old, Cannon’s medical journey has been complicated just as many of these heart babies are.  He has had 3 Heart Catheterizations, multiple tests ran, umbilical lines leak into his abdomen, a Tracheotomy placed, a g-button placed, a broviak placed, an exploratory Ladd Procedure done, been ventilated for 6 months of his life, vocal cord paralyzation,  2 open heart surgeries, 3 ambulance rides, and been diagnosed with Benign Hydrocephalus (fluid on the brain).  However, he is a vibrant and loving little man, one that can put a smile on your face no matter how down you feel.  I am truly blessed to be his mom.






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