My daughter, Olivia, was born in January 2013 with a congenital heart defect called Tetralogy of Fallot. Even with several detailed ultrasounds during my pregnancy, we were never given any indication that her heart was anything other than perfect. She was diagnosed about 36 hours after birth. She stayed in the NICU just after being born, and then had open-heart surgery on May 1st, 2013, at Yale-New Haven Children's hospital when she was 14 weeks old. The open-heart surgery successfully corrected her VSD.
By God's grace, she is doing just fine, although she will need at least one more surgery sometime in her future to repair her pulmonary artery and pulmonary valve that had to be widened (cut through) during surgery to allow her to make it through childhood. The doctors have given us every indication that she will lead a normal, happy, active life. My husband and I got a crash course on the heart and congential heart defects this year, not to mention learning first-hand what it's like to have a child in the NICU, the PICU, and recovering from a massive surgery.
It goes without saying that our daughter's heart surgery was, bar none, the hardest thing my husband and I have ever gone through. But God was beyond merciful to our family and brought us through to the other side with a beautiful, healthy, thriving baby girl.
If you happen upon my blog and you happen to be traveling a similar path with your child, PLEASE contact me in some way! It can be a long, scary, lonely road and having support makes each day so much easier. My e-mail is blessedlifeblog{at}gmail{dot}com. I would be more than happy to talk with you, listen to your story, and pray for you and your family.
Talking about what we went through still makes me cry...I've written some posts and the closest I've gotten to describing her actual surgery day is the post titled "A Letter to Olivia" you can see below. Honestly? It's still extremely difficult for me to put that day and experience into words. But here are the few posts that I have written, and I hope if you find yourself on a similar journey with your child that you will read and know that God knows your precious baby's story already...and you are most definitely not alone!
Introducing: My Beautiful Daughter and Her Very Special Heart {2/13}
When Your Baby is Born a Little Broken {4/13}
Olivia's Facebook Page {3/13}
Prayers for My Daughter - {4/13 - written the day before surgery}
The Last Quiet Hour of 2013 {12/31}
A Letter to Olivia {1/27/14 - Remembering Her First Year}
Jessica, your article How to get mold out of the shower" brought me here and I'm very blessed for it. I just read "Olivia's Story" and am so happy that you share this as well as your faith with the world. I am especially impressed that you give "credit where credit is due", to God. It inspired me to blog about you, I hope you don't mind but I believe people like you online need to be uplifted by the rest of us rather than hushed and brushed under the rug, so to speak. My article (brief) about you will be published tomorrow (5/4/14) at 8:30am - I hope you stop by and read it, it's all true and you deserve the respect and admiration from everyone that I have for you. God bless you.
ReplyDeletehttp://anitalite.blogspot.com.
Thank you for sharing your belief in love, hope, and that with God nothing is impossible.
ReplyDeleteMy son was born with a condition called premature closure of the metopic suture, an opening in the skull to facilitate birth grew together at an early point in the womb. I was told many things by doctors and others (by age 5 he would be retarded and other such horrifying things). That was 42 years ago. He was prayed for and he has no mental problems. The skull is slightly misshapen but he has learned to live with it and 99% of the people he meets never notice. The Lord is merciful toward us. Hang in there.
ReplyDeleteThe hardest thing in life is seeing our children go through surgeries, tests, etc. As a mom, you just wish you could take it away from them by giving it to yourself. We love them that much. Thanks for sharing Olivia's story. What a beautiful girl. My son had surgery when he was 4 months old for sagital synostosis (premature closure of the sagital suture in the skull). He was fine. He's now a very productive 27 year old man with a good job and is a natural athlete. Anyway, it was good to hear your story. Also, will try your mold remover!
ReplyDeleteInteresting story, I loved it thoroughly.
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