“My name is Jordon Bailey – the momma of Ellis Bailey, who was born on July 13, 2018 with full Trisomy 18. Ellis spent 69 days in the NICU and I forget how many weeks in the PICU at cook Children’s in Fort Worth.
There he had three life saving surgeries:
A congenital diaphragmatic hernia repair and g-button placement at 4 days old
An open heart surgery to repair his large VSD and PDA at 6 weeks old
A diaphragmatic re-repair.
We’ve been told he was the first baby with Trisomy 18 or 13 to be intubated at birth at Cook Children’s and possibly in all of Fort Worth. God is using his life to change the way doctors treat and see children with life-limiting diagnosis’s – and we get the honor of being a part of that.
I was 16 weeks pregnant when Ellis was diagnosed with Trisomy 18. Shortly thereafter, God used Abel Speaks to offer hope to this family. I had already done as much research as I could tolerate leading up to that appointment. I cried thinking about all of my dreams slipping out of my hands. I remember being afraid. Afraid to lose him. Afraid OF him. Afraid of a long hospital stay with him. Afraid of bringing him home.
I remember the first time I came across Abel Speaks, when Kelly and Daniel’s blog from 2015 popped up on a google search. I stayed up for hours late at night reading every post. Tears streaming down my face. I can remember the first time I saw a picture of Abel – I can still so clearly remember that moment. It was the first time I wasn’t afraid of Ellis. Abel, beautiful and perfectly made. God used his life to give me hope, and finally a breath of air, and I wasn’t afraid. I was hopeful.
I met with Kelly over coffee (and a Jimmy Johns sandwich) and we shared stories. She spoke about Abel and I left full of thankfulness for his life and his parents faithfulness. Abel Speaks has loved us well from that first moment on. You have been resources during pregnancy. Books and scripture to prepare us and remind us and to cover our hearts with. Families who have been there were offered to us to walk alongside with. When Ellis was born, you generously gave your presence, meals during our very long hospital stays, and gifts. You gifted us a doula who offered wisdom and advocacy and peace during labor and postpartum, and a videographer that captured the beauty of the day Ellis arrived so we could look back at it forever.
The first couple of days of Ellis’s life were made more challenging when an illegal document was placed on him against our wishes – the doctor deciding at what point his life no longer held value. You helped us navigate that with grace and offered priceless advice and help. And most importantly, You have covered us in prayer. When we didn’t even have words or the strength to pray we knew you were warring on our behalf. You have carried us this past year.
Through Ellis’s life our dreams have been replaced with even better moments, hard moments, and miracle moments. Ellis’s life has changed ours. God has used it to shape and sanctify, and continues to do so. There is joy we couldn’t have experienced without the blessing of Ellis. We cherish the 8 months and 8 days we had with him on earth. Though our time with him was limited, it was so incredibly worth it. And ultimately because our hope is in the creator and healer of Ellis not the healing of Ellis, we look forward with hope, knowing God is going to make all things new – including Ellis.
Thank you for loving us and loving our son. You are so much a part of his story and we are so grateful for you.”
Jordon & Cooper Bailey, in memory of Ellis Isaiah Bailey
*To see the personal blog that Jordon & Cooper kept through that season with Ellis, click here.