If you know me well, you know I LOVE Pinterest. If you have gotten to know me in the last few months since Mylah's diagnosis and birth, you know that I am diving head first into creating awareness about CHD's. I am a Mother to a CHD Warrior and with another surgery looming in the near future, I am sharing her story so I can inspire, uplift, and make others aware.
So here we are, one week from the start of CHD Awareness Week (Feb. 7th - 14th) and I am excited to share my participation in The Faces of CHD Pinterest Challenge.
The hope is "to help promote awareness of and advocacy for children (and adults) with congenital heart defects by founding a Pinterest board devoted to sharing the stories of families affect by the #1 Birth Defect." (Ruth H. of A Trip to Holland)
Here is our story, our experience of living with a child with CHD:
Our sweet Mylah Leilani was diagnosed in utero at 24 weeks with Tetralogy of Fallot. Though only a guess from what the Pediatric Cardiologist could see, it was confirmed on her birthday of October 1, 2011.
Born a "Pink Tet" with high oxygen saturations, Mylah impressed the NICU team and Cardiologists from the beginning. She remained stable for five wonderful days.
That fifth day of life became one we will never forget.
After having a routine Echocardiogram, Mylah's Cardiologist wasn't happy with the size of her Pulmonary Artery. It had closed off significantly in only a day. She would need Prosteglandins to try to open up her ductus and get her heart flowing as it should again.
Once the PG's were administered Mylah's started experience a Tet-spell. Her oxygen saturation was down 50% and she was blue and gray all over.
Realizing the extreme situation her Cardiologist ordered immediate surgery to place a BT shunt to create better blood flow in her heart.
In tears, I rushed out of the NICU while Neil stayed behind to be with Mylah. I found a private bathroom and placed my face in my hands and bawled. I prayed to my Heavenly Father and promised him that I would do anything required of Him, if he would save my baby girl.
After stabilizing Mylah a bit, they prepped her for surgery and we said our goodbyes and watched her roll away to the OR.
We waited two and a half painful hours for news of her surgery.
It was good news, she had done well, had the shunt placed, and come through the surgery just fine. She was in the PICU awaiting our visit and recovering.
Over one hurdle, we jumped many more in the 6 days post-surgery hospital stay. She amazed the staff with her ability to fight through the pain and prepare herself to come home for the first time. At exactly 11 days old, Mylah came home to recover from her first heart surgery and await her full repair.
Now almost 4 months old, and doing well, Mylah is growing as she should. She shows no signs of developmental delays, or current heart problems. Her BT shunt is a miracle, and is keeping her alive.
As a family we have grown so much closer. We cherish the small moments, look for our Heavenly Father's tender mercies, and strive to be the best we can for Mylah.
She taught us to turn to our Heavenly Father in hard times, increased our knowledge of His Plan, and helped us to have faith in the unknown.
We love Mylah with all our hearts and have become advocates for creating awareness about CHD's. We pray for those who, like us, are still fighting this fight, who need love and support and who's children are healing.
Please join us, and help create awareness by re-pinning this post, sharing it, and contacting us with your stories!
mendingmylahsheartstrings@yahoo.com
Neil and Lara H.
So here we are, one week from the start of CHD Awareness Week (Feb. 7th - 14th) and I am excited to share my participation in The Faces of CHD Pinterest Challenge.
The hope is "to help promote awareness of and advocacy for children (and adults) with congenital heart defects by founding a Pinterest board devoted to sharing the stories of families affect by the #1 Birth Defect." (Ruth H. of A Trip to Holland)
Here is our story, our experience of living with a child with CHD:
Our sweet Mylah Leilani was diagnosed in utero at 24 weeks with Tetralogy of Fallot. Though only a guess from what the Pediatric Cardiologist could see, it was confirmed on her birthday of October 1, 2011.
Born a "Pink Tet" with high oxygen saturations, Mylah impressed the NICU team and Cardiologists from the beginning. She remained stable for five wonderful days.
That fifth day of life became one we will never forget.
After having a routine Echocardiogram, Mylah's Cardiologist wasn't happy with the size of her Pulmonary Artery. It had closed off significantly in only a day. She would need Prosteglandins to try to open up her ductus and get her heart flowing as it should again.
Once the PG's were administered Mylah's started experience a Tet-spell. Her oxygen saturation was down 50% and she was blue and gray all over.
Realizing the extreme situation her Cardiologist ordered immediate surgery to place a BT shunt to create better blood flow in her heart.
In tears, I rushed out of the NICU while Neil stayed behind to be with Mylah. I found a private bathroom and placed my face in my hands and bawled. I prayed to my Heavenly Father and promised him that I would do anything required of Him, if he would save my baby girl.
After stabilizing Mylah a bit, they prepped her for surgery and we said our goodbyes and watched her roll away to the OR.
We waited two and a half painful hours for news of her surgery.
It was good news, she had done well, had the shunt placed, and come through the surgery just fine. She was in the PICU awaiting our visit and recovering.
Over one hurdle, we jumped many more in the 6 days post-surgery hospital stay. She amazed the staff with her ability to fight through the pain and prepare herself to come home for the first time. At exactly 11 days old, Mylah came home to recover from her first heart surgery and await her full repair.
Now almost 4 months old, and doing well, Mylah is growing as she should. She shows no signs of developmental delays, or current heart problems. Her BT shunt is a miracle, and is keeping her alive.
As a family we have grown so much closer. We cherish the small moments, look for our Heavenly Father's tender mercies, and strive to be the best we can for Mylah.
She taught us to turn to our Heavenly Father in hard times, increased our knowledge of His Plan, and helped us to have faith in the unknown.
We love Mylah with all our hearts and have become advocates for creating awareness about CHD's. We pray for those who, like us, are still fighting this fight, who need love and support and who's children are healing.
Please join us, and help create awareness by re-pinning this post, sharing it, and contacting us with your stories!
mendingmylahsheartstrings@yahoo.com
Neil and Lara H.
