When we first became pregnant with our daughter, it seemed the years of waiting had faded away to reveal a life I’d always imagined: a loving husband, a precocious toddler for an older brother, and a sweet little baby girl on the way.I imagined everything pink and frilly, from the ballet slippers to the perfect little ensembles and matching bows I’d dress her in. I would name her my special baby name– the one I had chosen when I was studying abroad in Italy and made my sisters swear they’d never steal even if they had a little girl before me. Sienna would be the perfect completion to our lives.

Then came the dreaded voicemail.

I had decided to take our son, Ben, to ride the train at the mall one day after work. As I sat next to him, rumbling along the cobblestone road, I missed a call from my doctor’s office. I picked up the voicemail, hardly believing the words that followed: “We need to speak with you regarding some concerns from your ultrasound.” It was like time stood still as my heart sank. On that day, we gave our daughter her middle name, Grace, because by the grace of God, she would be born healthy.

I will never forget sitting in the waiting room of the perinatologist’s office awaiting our appointment. I was sick to my stomach with the weight of the unknown. I was filled with so much fear and anxiety, I could barely breathe. Surrounded by women glowing with the lives of the healthy babies they carried, I was walking through the valley of the shadow of death. I stared at a little note I had saved in my phone entitled “Scriptures for When I am Anxious.” Over and over again, I steadied myself with the truth of scripture: 

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving present your requests to God and the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7 

That appointment led to one horrible “instead” after another: instead of a normal spine, my baby’s would be open; instead of a functioning heart, my baby’s was abnormal; instead of a healthy baby, mine may be paralyzed or mentally incapacitated or both.

Three weeks after that, we heard what we had feared most: “instead of a living baby, yours will be dead.” 

An amniocentesis revealed that our daughter had Trisomy 13, a chromosomal abnormality that was “incompatible with life.” We were told that our daughter would, at some point, die in the womb. The research showed that very few babies with Trisomy 13 survive to full term. I was 24 weeks pregnant and knowing that she would not live, they asked us if we wanted to terminate our pregnancy. My husband spoke up immediately and said what I did not have the strength to. We would carry our sweet girl until God decided to take her in his own time.

 The reality of that decision was so heavy, especially in those first few days. After crying myself to sleep that night, I awoke to our baby girl kicking in my belly. I crumbled on the floor in a ball of grief and disbelief. How could this active baby be destined for death? How could I carry her knowing that any day could be her last?

“We do not  know what we ought to pray for, the Spirit himself intercedes for us through wordless groans.” Romans 8:26

The following morning, I woke up to no movement at all. I panicked, thinking we had reached the end, but my husband encouraged me to take a breath, drink some juice and see if we could wake her up. After what seemed like an eternity, our baby began to kick again and I was overwhelmed with unexpected joy. Though nothing had changed in the reality of our situation,  God was showing me that each day I carried this precious life was a blessing. 

The following months were full of ups and downs. From that point on, we decided to celebrate our girl and the time we had with her. We took her on family outings, called her by name, and tried to do the things we might never be able to do with her. We continued to pray for a miracle.

As I approached my due date, my growing belly belied our circumstance. People in the grocery store would stop me to ask about our baby and I constantly faced the turmoil of how much to share. Every well-meaning well-wisher pierced my heart with the reality that though the passing days were leading closer to her birth, they were also leading closer to her death. 

During that time, I saturated myself in scripture and began to understand the reality of God’s Word as my “daily bread.” The truth of scripture soothed me to sleep, awakened me in the morning, and gave me the strength to keep moving forward. I heard the song Oceans (Where Feet May Fail) by Hillsong UNITED, for the first time. While listening to this song, I closed my eyes and God sent me a vision based on Matthew 14:22-33.

I was Peter. Out in the boat. The storm raging around me. Full of fear. Being called to step out in faith. To trust that Jesus would catch me. I strained to see through the storm. All I could see was the face of Jesus. His outstretched hand. Assuring me I  would not drown. 

“You call me out upon the waters.
The great unknown where feet may fail.
And there I find you in the mystery.
In oceans deep, my faith will stand.
And I will call upon Your name.
And keep my eyes above the waves.
When oceans rise, my soul will rest in Your embrace.
For I am Yours and You are mine.”

I remember wrestling with the questions of why God would allow this to happen when I came upon Psalm 139. The scripture came to life as I understood so vividly in that moment that God had created Sienna and placed her in my womb. He had chosen Joey and I to be her parents. All of her days were written in His book since long before she was formed in that secret place. These words, penned centuries before, became Sienna’s special scripture which I turned to often for comfort.

As I approached my last day of work before maternity leave, a week before Sienna’s due date, a group of godly women gathered together to lay hands on me and pray powerfully over me. I was overwhelmed with emotion. The love, support, and joy was palpable, though we all knew the road that lay ahead. Nothing had changed in our circumstances, yet our girl had overcome the odds as we approached her due date. That group, who prayed together that day, would meet to pray together as I went into labor and continue to pray and do life together to this day. God used Sienna’s life to surround me with a community that continues to be a huge source of support in my life to this day. Though we had scheduled a c-section for later that week, I awoke that Monday to find myself in labor. Family met us at the hospital in joy and anticipation of holding our baby girl. Just a few short hours later, our daughter, Sienna Grace Prestella, was born. We were overjoyed to look at her sweet face and hold her in our arms. I remember being so overwhelmed with joy that despite the odds, we had been able to meet her alive and experience the miracle of holding our first daughter. 

Isaiah 61 was sent to me during our pregnancy. It has beautiful references to comforting all those who mourn and binding up the brokenhearted; but it wasn’t until nearly two and a half months after our daughter went to be with the Lord, that I noticed the word “instead.”

“A crown of beauty INSTEAD of ashes. The oil of joy INSTEAD of mourning. And a garment of praise INSTEAD of a spirit of despair.” Isaiah 61:3 (emphasis added)

It had me thinking about all the “insteads” in my life and how God worked them all for good. Maybe God wasn’t offering me a lesser substitute, but leading me to a new “stead” – a new station or place in life with more beauty than all the plans I had made for myself.

Losing our precious Sienna Grace has undoubtedly brought us the greatest grief we have ever experienced, but it has also delivered unexpected joy in the midst of our sorrow. I have felt the closeness that God promises in times of trial unlike any I’ve felt before. We have renewed our appreciation for our family, friends, and the amazing community which God has built around to support us. God has opened my eyes to the pain of infant loss in all forms and called on me to share our story with so many women who experience this deep grief. Out of the ashes of our loss and despair, God has drawn our eyes away from this world and focused them on the sweetness of our heavenly home where our sweet Sienna Grace awaits us. We were supposed to raise our baby girl on this earth, but she has drawn our eyes heavenward instead.

By: Shannon Prestella

Shannon Prestella

Shannon has been attending Hillside for six years and enjoys serving as a table leader for women’s Bible studies. She is an Innovation Specialist and Teacher Librarian at Bonita High School, and has been married to her hubby, Joey, for 12 years. In addition to sweet Sienna Grace, she is mama to Ben (9) and two rainbow babies – Nate (5) and Allie Grace (4). In her free time, Shannon enjoys cozying up with a hot cup of coffee and a good book, writing on her blog, seeing as much musical theatre as possible, and spending time with treasured family and friends.