There's No Place Like Home....
after 89 days, open heart surgery to repair multiple defects, a episode of respiratory distress, a surprise diagnosis of severe tracheomalacia, a tracheostomy, 4 weeks of ventilator training, electrical upgrade shenanigans, flu scare that delayed our discharge date.... We are HOME.. where our HEART is.
Never thought that I would spend summer 2012 in the hospital. When we drove up the highway that Thursday, July 5, 2012 I didn't think that it would take 89 days for us to bring Mylah home.
We are still getting settled, it's hectic, but I'm happy & thankful!
Thankful for all the things we've gone through, thankful for all the lessons I've learned, all the knowledge I've gained, & all the people we met. There were times when I didn't know if I could go on. Didn't know how much more I could take. At one point I thought I was witnessing my daughter's last breath. When I signed the surgical consent for her tracheostomy I felt like I was signing away her life.
The journey to this day has been a long one. Starting almost a year ago. Just 17 days from today's date one year ago is when it all started. I went to the hospital to get a ultrasound and to find out what the sex of my baby was and left not knowing what the future held. There were so many days of uncertainty. This morning in the shower I thought to myself "I think I've cried more in the 348 days than any other time of my life. The tears however weren't all because of sadness. There were tears of joy, happiness, pain, gratefulness, amazement, defeat, & GLORY.
I know that the strength I draw is from no one but GOD. His love is everlasting. He has blessed me in so many ways. I would be scared if having gone through what I've endured thus far NOT knowing how I made it. I'm fully aware that he has his hands on Mylah and my family. Ordering our steps each way, opening doors, but sending us down paths so that we gain the understanding we need to press forward. I know that I have a calling to help others in the same situation. I know that I'm supposed to help bring awareness to Trisomy 18. I know that I'm supposed to promote LIFE & HOPE, & FAITH.
Helping is what I was put on this earth to do. That's why my heart is the way it is and he used Mylah's heart to show me the way.
I'm always thankful for each person that has said a prayer for our family. Every token of love, support, and encouragement is GREATLY appreciated.
Thank you & please continue to pray for us!!!!