Imagine going in to your 20 week appointment for a simple gender reveal only to be told you’re HAVING TWINS! Identical twins!!!! We were shocked and so excited, especially after struggling with infertility previously with our first daughter. We then met with our OB and were told our sweet babes had twin to twin transfusion syndrome and I needed to be rushed to Denver, Colorado to save our tiny girls, whom we named Spencer and Kestler.
Although everything felt out of control, we knew God was in control. There were so many “God whispers” starting with my mom retiring the Friday before and being able to stay with our oldest daughter, and continuing in Colorado with dear friends living 15 minutes from Colorado Children’s Hospital, to the tests all being run the very next day. We were told we had TTTS stage IV of V and Kestler had less than a 10% chance of survival. If we had not come to Denver when we did, we would have lost both girls within a matter of weeks. It came time to have a procedure that would attempt to save Spencer’s life. I had an issue with the epidural placement, but the staff was incredible. After the procedure, we waited, and prayed. An overwhelming peace came over us as people from around the world stormed heaven on our behalf.
We met with the doctors the next day only to hear: “I’m sorry Kestler has no heartbeat and Spencer’s heart is still enlarged.” The staff gave us time to grieve. I turned on music and the first song to play was “I am Not Alone” by Kari Jobe. Tears streamed down my face as I was covered in His love for me. Then I received a text from my brother-in-law. John 14:27. Again, peace enveloped us. After recovering in Denver, we made the drive home. The closer to home we got, the harder it became, because we left Wichita as a family of five, and returned as a family of four.
I was placed on modified bed rest for the duration of the pregnancy. I am not a sitter. When we returned to our OB, we heard stories of the nurses/staff gathering to pray for us when we left for Colorado, cheering and crying with us during every update. More God whispers.
Four weeks of bed rest only to be met with another battle. My water broke at 24 weeks and I was diagnosed with PPROM. I entered Wesley hospital scared and angry. A team of NICU specialists came in to prep us, but I never felt like we were having a baby that day, nor anytime soon. God was in control. Anxiety overwhelmed me many days. My case was unique, there was no data to go off, I had no idea what to expect, and neither did the doctors. Sixty days later I delivered both girls via cesarean. Joy and despair. Heartache and excitement. Fear and Trust.
It was hard to identify all the sounds and voices and reactions in the operating room. So many emotions slowed the processing of the mind. Another God whisper, as a loud cry came from Spencer. Tears of joy and relief as the NICU team rushed in and began the barrage of tests. Andrew went over to watch some of the testing and meet our precious daughter. When asked if he wanted to follow Spencer to the NICU he said he was going to stay in the OR/recovery. We still had one more daughter to meet. It wasn’t much longer before Kestler was cleaned and presented to us. It was a surreal moment. Finally, we met the one we mourned months before. She was engulfed in a receiving blanket making her look even smaller than she was.
“I was scared that seeing the mummified and slightly misshapen body would repulse me. Yet, as I looked her over, all I could see was the beauty in my hands. Arms, legs, feet, hands, toes, fingers, all delicately sculpted by the creator before my eyes. It was love at first sight.” -Andrew (Daddy)
I too was afraid of what I would see. Determined to hold my child, regardless, I made eye contact with my OB and she smiled and said ‘She’s perfect’ As I peeled back the layers I exclaimed, “She’s beautiful!” Love just radiated out of us for our angel.
A blind blessing we received at that moment was our waiting period. Waiting on reports from doctors about Spencer, waiting to be taken to recovery. It was taking a long time in the NICU and for Spencer to get settled. This gave us time to hold, love and mourn the loss of Kestler. There are no words to describe ones heart as you hold your still child in your arms, the only comfort was knowing she was being held alive in the arms of the one who made her! Because of her loss, her sister lives. Our blessing is that we will always know what she would look like in her identical twin. Some days that is our curse.
No matter how strong you are in the midst of a battle, during some point in the war you need help. We are blessed in our family and friendships. Not only were they there for us spiritually and physically, they also knew when to give us space. They loved on us during those hours we waited to reunite our girls one final time. Five hours later, we got the call that Spencer was finally ready. Erica was wheeled down in a recovery bed and our recovery nurse brought Kestler to us. When we got to the NICU, we were greeted by two loving and friendly faces. Tiffany and Ashley. Our nurse handed us Kestler, no longer swallowed up by a blanket, but perfectly placed in her cradle. We all gasped as it was made just for her. It was moving to see the love and care given for both our girls by Ashley and Tiffany.
Spencer and Kestler received the only photos of them in this world together. That time once again covered a range of emotions and those pictures are priceless.
After photos we went back to the room. The nurses took Kestler and told her they would bring her back later. Exhausted, we collapsed. When we awoke, Kestler was back in our room along with a beautiful box of mementos. The love those nurses put into that box is felt every time we share that box with others. With Kestler in our room, and parents coming to join our day, an unspoken avoidance was in the room. During my previous hospital stay while on bed rest, I had meetings with bereavement and nursing staff and we tried to talk about final plans, but had never fully decided. We got a list from the staff to make calls but it was too overwhelming. This was the first time in sixty days I was hit with the pain.
The realization our time was ending was paralyzing. We decided to have her cremated and I made three calls. At the time it seemed sudden, but we are grateful they came in and let us know it was time to take Kestler. It forced us to make a decision and say our final goodbyes. This was one of the most difficult things I have ever done. A piece of me was taken that day and the ache of my heart is my reminder of her beauty, and the calm is the promise I’ll hold her again. There were days of deep anguish as I looked at Spencer, knowing I should be holding two, and those were the days others carried me. There are still days I struggle with this, but my friends and family sit with me in the darkness and help me rise again.
Having her cremated was a great choice for us. We took her ashes to Karg glass and had them blown into custom made creations. Two small hearts and one larger bullet piece. We decided to use Kestler’s heaven date, as her birthdate and stone (teal). We did not want Spencer to share her birthday with her sister’s death date. These glass sculptures are a way we have chosen to remember the beauty of God’s handiwork. Much like the glass, our lives are missed with things of Joy and Sorrow, but when the light shines through it, you can’t help but see the beauty, and no matter how long you look at it, you will find parts you never saw before.
The pain and loss will ever be with us and there will be days we need to get in “Kestler’s box.” Still because of the hope of heaven and the love of our heavenly father, we do not live in that box. Instead we live in his embrace. He is big enough to take our fears, questions, in fact he already knows it’s coming. He is strong enough to withstand our anger and sorrow. And he holds us because our deepest emotions only begin to touch the chasm of the depth of emotions that is God’s love for us. For Kestler. Until we join Kestler, we will never fully understand, still we trust in the plan the Father has set before us.
“Peace I leave with you, my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” John 14:27
Written by Erica & Andrew Penrose, Spencer & Kestler's Mommy & Daddy
Photo credit: T.Marie Photography