Monday, July 31, 2006

Today's post is from an email along with a heart story from heart mom Valerie Guerin.

Cora Louise Guerin
Diagnosed with Hypoplastic Left Heart Syndrome in utero at 20 weeks – amazing at one year old!

Picking up my daughter out of her crib every morning is a blessing and a gift for which we are continually grateful. Despite two hospitalizations and complications, Cora is reaching her first year as a happy, well adjusted baby with an incredibly sweet and loving disposition. At 7 months of age we celebrated the receipt of local and state declarations for Congenital Heart Defect Awareness Week, which we feel were a testament to the resilience and spirit of our daughter and other infants and children who so bravely live with congenital heart defects. Unfortunately, these declarations are not permanent and require reapplication each year. I contacted the office of our Congressman, Rush Holt, who agreed to support the backing of the Senate Bill H. RES. 305 when it reaches the floor for discussion. This specifies the goals of the Congenital Heart Information Network in creating awareness of congenital heart defects on a national, permanent level.

The fact that we were devastated and had no idea about Cora’s diagnosis is an example of the importance of CHD awareness. We were conscious of how family and friends would receive the news, and were blessed with tremendous support. We are sometimes saddened when we hear comments that are well meaning but show great misunderstanding of Cora’s situation, and at the same time understand that it can be incredibly difficult to digest. Perhaps more awareness would create less isolation for parents trying to allow their child to be “normal” in an abnormal situation.

Cora has endured unexpected hospitalizations and visits to the local emergency room along with her two surgeries. Through all her trials, Cora smiled continuously and has led by example with her courage. Upon her return home from her second surgery in December 2005, Cora gave up her nasogastric (feeding) tube and began to eat on her own. This was truly miraculous as she had absolutely given up on feeding by mouth for weeks before. We are also grateful to the excellent staff at the Children’s Hospital of Philadelphia for their amazing skills and support. We thank God for the daily miracle that is our daughter.

Valerie and Mark Guerin

Cora's story

At our 20 week ultrasound we were told we were having a girl. Ten minutes later, we were told she was missing part of her heart. We also heard that we had a "long road ahead" and couldn't imagine what that entailed. When Cora was born, we thought we would be devastated when she was taken away for surgical preparation - we were actually at peace and happy to know Cora was in good hands.

Cora came home with a feeding tube and we didn't realize just how big the feeding issue would be for her. We worked with her and she was doing well until she stopped after three months. A month after being home, Cora returned to the Children's Hospital of Philadelphia due to a pericardial effusion. A month later, she was brought to the local hospital for borderline dehydration. Just when we thought we were settling back the following month, Cora prematurely returned to CHOP for her second operation at four months of age.

It was after the Bidirectional Glenn that we saw even more wonderful progress in Cora. She was a happy, content baby after the Norwood, but she became even more cheerful and energetic. One of the many things we admire about her is her ability to smile, sing, and play in any situation. Throughout the hospital stays and various complications, she has been an amazing little trooper.

Upon our last return home, Cora decided she didn't need her feeding tube any more. This was a miracle considering she had given up eating for weeks. Her eating continues to improve, as is her weight. Cora had two factors against her going into her first surgery: her small size and small aorta. Now at six months old she is thriving.

We are grateful to the staff at the Brunswick Hills OB/GYN office, St. Peter's University Hospital, and CHOP for giving us hope and the ability to tackle each issue as it arose. We have been overwhelmed by the selflessness of others and blessed with the invaluable support and prayers from family and friends. Other families with heart children and those involved with Little Hearts have given us immeasurable optimism and valued friendship. Cora's grandmothers helped us settle into parenthood and taught us to enjoy Cora for who really is - a happy, normal baby. We are honored to be Cora's parents, and hope we can make her as happy as she makes us.

Story by Cora's Mom and Dad, Valerie and Mark - New Jersey

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