♥ Congenital Heart Defect Awareness Week ♥ Meet our February 7th Heart Warrior Cecilia Celine Vinje. Daughter to Sarah Vinje.
Cecilia's story as told by her Mommy:
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. ♥
Cecilia Celine Vinje was born June 29, 2012 in Baltimore, with Hypoplastic Left Heart Syndrome (HLHS). She went into respiratory failure less than one day 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. Cecilia was tricky. She was stubborn. She was extubated just in time to celebrate her 1 month old birthday and be held by Mommy again. She had a Gtube placed because of feeding intolerance. She also had complications of left vocal cord paralysis, blood stream infections and a DVT occluded left Femoral Artery.
She finally was discharged September 10, 2012...but it wouldn't 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 sides. 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. For the first time Cecilia was able to get her food without frequent projectile vomiting. 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 came home New Years Eve 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.
Cecilia's story as told by her Mommy:
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. ♥
Cecilia Celine Vinje was born June 29, 2012 in Baltimore, with Hypoplastic Left Heart Syndrome (HLHS). She went into respiratory failure less than one day 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. Cecilia was tricky. She was stubborn. She was extubated just in time to celebrate her 1 month old birthday and be held by Mommy again. She had a Gtube placed because of feeding intolerance. She also had complications of left vocal cord paralysis, blood stream infections and a DVT occluded left Femoral Artery.
She finally was discharged September 10, 2012...but it wouldn't 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 sides. 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. For the first time Cecilia was able to get her food without frequent projectile vomiting. 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 came home New Years Eve 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.
❤Congenital Heart Defect Awareness Week❤ Meet our February 8th Heart Warrior Destiny. Daughter to Andrea Absetz.
Destiny's story as told by her Mommy:
My name is andrea and my daughters name is destiny. We found out that she had hypoplastic right heart syndrome (HRHS- like Lily had HLHS for the left side- but this effects the right side of the heart) at my 18 week sono appointment when i found out i was having a girl.
We also found out that she had some kind of clefting, we didnt know how bad it was because every sonogram we had she hid her face.
Around 25 weeks I started having weekly sonograms to check my fluid since it was on the higher side. My doctor in wichita recommened childrens mercy in Kc to deliver and take care of Destiny's heart problems as well as her cleft.
I went up there during my pregnancy, meet all the doctors that I needed to meet and even got to tour the NICU that i was told my baby would be there at least 2 months, maybe longer.
The plan was to have a deliver via c section one week (Jan 3, 2012) before my due date which was Jan 10, 2012. Destiny decided to come earlier and my water broke on Dec 29th, 2011 at 11 am. Went to ER and had an Emergency c section she was born at 1:30 pm weighing 7 lbs 6 oz and she wasnt breathing so she was quickly intubated.
She was life flighted to KC that night without me and her father. I was so scared for her. After being in the NICU for awhile we found out several other problems that she has. HRHS, pulmonary atresia, choanal atresia, hearing loss, coloboma in both eyes, bilateral cleft lip,and unilateral cleft palate.
She was in the NICU for 2 months before going home. She is now 13 months old and has been through alot. She has had 3 heart caths, open heart surgery when she was three weeks old, ear tubes put in, her cleft lip fixed, and her g tube surgery.
❤Congenital Heart Defect Awareness Week❤ Meet our February 9th Heart Angel Cora. Daughter to Kristine Brite McCormick.
Cora’s story as told by her Mommy:
Cora Mae McCormick was born seemingly healthy on November 30, 2009. Five days later, her mother was nursing her when she suddenly stopped breathing. She died in her Mother's arms suddenly and unexpectedly. The coroner later diagnosed her with a congenital heart defect.
Kristine is making it her mission to tell people about congenital heart defects and she wants all babies to get screened (pulse ox) before it is too late.. She wants to help save babies..
Please take time to read her story and visit her website: http://www.corasstory.com/ or Facebook page: https://www.facebook.com/
No comments:
Post a Comment