I'm participating in Stefanie's blog event that helps connect heart families to each other and share our heart stories. Please click the picture below to go to Stefanie's site and read other heart stories!
Our story is just beginning as Joshua is just one week old today! In his one week of life, he has been through a NICU stay, PICU stay, and open heart surgery. To celebrate his one week of blessing us on this earth, his chest will be closed and we will be one step closer to coming home!
Here is our story from the beginning.
At 11 weeks, I was rushed to the ER gushing blood. I was sure I was miscarrying. I sat in the waiting area for a room and cried out to God begging Him to have mercy on the little life inside me. They got me into a room, and told me that chances of my baby still living inside me were slim to none. They did blood work to test for HCG and we waited for what seemed like forever for an ultrasound. (I wanted to scream at them to at least get a doppler to see if we could find a heart beat) The doctors finally took me back for an ultrasound and to everyone's disbelief there was a healthy happy baby squirming around in there. It was determined that I had a 3 cm Subchorionic Hemorrhage. This is basically a bleed that gets trapped between the placenta and uterus. I was told to follow up with my OB the next day and to follow strict bedrest rules.
In a matter of 5 days, the hemorrhage had grown from 3cm to over 7cm and I was told that the baby probably would not make it past 18 weeks. I was to "take it easy" and let nature take it's course. Those weeks of bedrest and waiting were excrutiating.
I was sent to a high risk OB at 14 weeks and during the first ultrasound, he found a glowing spot on the heart that he thought was "interesting." He told us not to worry, and I had decided that I needed to focus on the hemorrhage and not the heart. We would cross that bridge when we came to it.
At 22 weeks, the doctor sent me to a Maternal Fetal Medicince doctor to take a better look at the baby's heart. (The tech couldn't get a good look at the left side of Joshua's heart at our 18 week scan.) That is when our lives were turned upside down. The cardiologist came and looked at Joshua's heart for what seemed like forever. After an eternity of silence, he said "You baby has a rare and severe heart defect called Hypoplastic Left Heart Syndrome." He continued to tell us about the 3 stages of surgery and the type of life Joshua could possibly lead. He gave us 4 options as far as care and treatment for Joshua- 3 stage surgery, heart transplant, compassionate care, and termination. We obviously immediately chose to fight for our child's life and chose the 3 stage surgery.
And now our journey has physcially begun with the birth of Joshua on August 16th and his first surgery, the Norwood procedure, on Aug. 19th. The surgeon will be closing his chest in just a few short hours and we will be one step closer to coming home!
Thanks for walking this journey with us! We have been blessed beyond measure by your prayers, love, and support.
2 comments:
Thanks for sharing your story Jill and for participating in my blog event. Make sure you stop by at 12 PM CST today to link your post to my blog so others can read Joshua's story!
So, happy that he is doing better Jill. I've been praying for you guys!!
Oh, it sounds like you have been through a lot in the past few months! I know it is so difficult having your baby in the ICU, but I am happy for you that you were able to carry and deliver him safely. I hope that Joshua continues to progress and that you'll be able to take him home, soon.
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