Written by Teresa Goodnight
“We’re so very sorry. Your son won’t be going home with you. We’re setting you up with palliative care to be with him while he is here to make him comfortable. There’s nothing we can do.”
The doctors said something like that. The exact words never really made it into their minds. Ben and Noelle just sat there. “We were in a puddle on the floor. Broken. How could this be what God had planned for us? Everything I had asked God for…everything…He just didn’t answer one single thing,” said Noelle with more strength than she felt that night. “With what felt like no faith left,” she continued, “we prayed for him, both Ben and I, together. I say I prayed, but I could barely speak the words,” said Noelle.
Ben and Noelle started their journey together long before they knew they were starting THIS journey together. Some, like Ben’s dad, knew Noelle was the one for Ben from the first time they met. Both of them had such a heart for ministering to others through song. Their hearts wanted to share songs about God, praising God, strengthening anyone who would want to worship God with them. Even at the hospital, through this nightmare, someone brought a guitar—and there in their brokenness they sang worship songs with family and friends, both old and new, gathered around them. When praising God is just who you are, it just comes out no matter what path God has you on at that exact moment it seems.
In the beginning, the couple had crossed paths many times in the worship arena. They had a host of mutual friends and acquaintances. It wasn’t until Noelle was working at a homeless shelter in Amarillo and wanted to do a lullaby album for families that they really connected. Noelle contacted Ben through MySpace, knowing his heart for music and worship—and she wanted him to be one of the contributors on the lullaby album. However, after Ben called her and they talked for several hours, they started a journey that led them here, to this hospital in Little Rock, Arkansas trying to sort through God’s plan for their lives. How was this His plan for bringing little Pierce into their story? How was God threatening to take him in what seemed such an abrupt disruption to their well-laid plans and dreams?
Ben said, “Our first Christmas, we weren’t officially dating. After my dad passed that February, I was going to Eskimo Joe’s. I needed to go play somewhere. Stillwater seemed as good of a place as any. Dad’s passing was unexpected and really hard on me. Noelle drove there with me. We already were really boyfriend and girlfriend I think, but I asked her officially that night. That was 11-12 years ago. This June will be 10 years since we married in Cain’s Ballroom.”
When Ben and Noelle married, they knew they wanted children. In fact, they spent several hours on a plane after Ben proposed thinking of the names of their future children. They knew they would adopt, along with the plan to have biological children. It was always the plan. Then, they quickly found themselves in the infertility doctor’s office. Noelle said, “We knew we always wanted to adopt. We had decided when we first got married we would try to have children and just see what happens.” Noelle then said, “We were quickly told we couldn’t have children. With our makeup together, there was less than a 1% chance we could conceive naturally. So, we did IVF (In Vitro Fertilization) a couple of times.”
The couple was headed to the Texas panhandle to work on their album at Noelle’s brother’s studio. While there, they tried IVF. When they found out they were pregnant just a few weeks later, they were elated. Then, at just 7 weeks, Ben and Noelle lost the baby in a miscarriage. Noelle said, “It was devastating. IVF is stressful all by itself—it’s really hard. It’s hard on your relationship. It’s just hard on everything. It takes the romance out of things.”
The couple then decided they would look into adoption sooner than they had thought. Noelle said, “We didn’t want to approach adoption as our consolation prize. It’s super important to anyone adopting to pay attention to that. I don’t ever want these kids to think the dialogue of this amazing way we became a family is because we couldn’t have biological children of our own.”
The Kilgores still weren’t sure they were ready. They needed time to process everything as they moved into this new direction. Between the IVF, the miscarriage, the stress of the situation—it’s difficult for anyone faced with so much to find a bit of peace in anything they are trying to do. It really takes some time in front of God. It takes time to let Him heal the pain, the wounds. It takes time to hear His voice to know where the path is He has for you now.
In just a short time, Noelle said, “We had a meeting in Tulsa with Dillon, an adoption agency. We didn’t want to do a domestic adoption and certainly hadn’t wanted to do one that was open, where the birth mom remained in our lives. It just didn’t sound like the right step for us.” So, they moved to Phoenix and started the process of adopting internationally. In their first step, the couple got on the list for Ethiopia. Ben said, “Noelle completed massive amounts of paperwork trying to get everything ready. Things weren’t really moving forward for some reason. Then all of a sudden, Ethiopia shut down for adoption.” Noelle and Ben both were frustrated. They were trying to follow God in this story of their family, but they felt they kept running into walls. In times like these, you really start to search your heart and soul—just trying to make sure you are listening to Him. We’ve all been there.
“So, we thought we had a plan—then it didn’t work out,” said Ben. Then Noelle chimed in, “We had this friend out there in Arizona, who said I have an adoption lawyer who helped my brother’s girlfriend’s family or something like that.” Noelle continued, “We had already done all the paperwork for the international path. We didn’t want to go chase a bunch of stuff, but then a month later, I woke up in the middle of the night and felt I was supposed to reach out to this lawyer. So, I reached out to him.”
Ben said, “We kind of went that direction, but we didn’t even know what domestic adoption looked like.” Then, he said, “One morning, we were on our way to Scottsdale for yet another fertility appointment. On the drive, the lawyer called us and said, ‘I have a boy that’s due in September if you are interested.’” Ben and Noelle both chimed in, “We were like WHOA!” They went to the fertility appointment, but immediately called back to put their yes on the table. That yes led them to Little Rock, to the CD-ICU trying to find the faith to just breathe. That boy was little Pierce.
When Ben and Noelle first talked to the young 17-year old mom, it was via Skype. She was Marshallese (native of the Marshall Islands). Ben and Noelle learned there’s a community in Arkansas of Marshallese people due to nuclear testing on the islands, which gave the inhabitants a pass to America. The birth mom came to Arkansas to live with her aunt at about 10-12 years old and her parents remained there. Noelle said, “There was quite a language barrier at the time we talked but the next day the lawyer called. The birth mom told the lawyer she wanted us. It was so fast, but we knew it was God’s plan for the story of our family. We did all the things to prepare. It was just a dream come true.”
Ben had travelled to New York one week, when Noelle received a disturbing call. Noelle said, “One morning, the birth mom called. She was upset but I couldn’t even understand most anything she was saying with the language barrier. I just knew it wasn’t good.” The one thing Noelle did catch was the doctors had told the birth mom something was wrong with his heart. She wasn’t sure. Noelle went on, “I was just beside myself. How could this be? I just started getting permission for the doctors to speak directly to us. It was just surreal. We had a baby shower. The nursery was done. How could this be happening? How could this be God’s plan for us?” The cries of her voice broke her heart into pieces as she jumped into action mode.
“It took a couple of days to get all of the permissions worked out. Then, the doctor called us and said this list of all the things wrong. It was like THIS long.” Noelle said as she made a gesture of a list extending about a foot long. “It included something about his heart, his lungs, his arm, and it just went on,” Noelle said.
“Then, he said ‘I’m so sorry. I’m not sure how he’s even going to survive after birth.’”
The words cut straight through Ben and Noelle’s hearts like a cold knife had actually been plunged through them both. Being a couple sharing an incredible strength of faith in a powerful God, Ben chimed in, “We were devastated, but we immediately just started requesting prayers for him everywhere we could. We had friends sending out requests.
There were literally thousands of people praying for him all around the world, dropping to their knees for him. We were praying for him to surprise the doctors and just be a marvel to them. We just knew God was going to answer our prayers. We knew this marvel was going to be our story. Then, there we were in Little Rock.”
The doctor explained to the Kilgores upon delivery, their new son had Hypoplastic Left Heart Syndrome (HLHS), a birth defect where the left side of the heart does not form correctly. That day, the day Pierce was born, the doctors began longer explanations of his inability to be helped due to his other health problems. Ben said, “Pierce had only one full functioning lung and now they also found a kidney problem. Because of these issues, the doctors said he can’t survive the lifesaving surgeries that they needed to do. They said they were going to make him comfortable.”
Ben and Noelle just paused in the story. They had just been through so much, so quickly—and found themselves in what seemed like a bad dream. Ben went on, “The doctors and nurses rallied around us, but knew it was impossible he would survive. He was life-flighted to Little Rock to the Children’s Hospital. We were there several days; they looked at every way possible to have surgery. Their last resort was to have a surgery to open up his left lung to give him a chance to have his heart surgery. They came back again and said there’s just no way. We’re so sorry.”
That’s where they were when we started the article—palliative care for little Pierce. Ben said, “We were a mess because we really felt God had given us this desire. We dreamed of this boy, and believed God was really going to heal him before he was born. Our prayer was that his life would marvel the doctors. We had people all over the world praying for him. It just didn’t seem real that he wasn’t healed.” Noelle said, “Pierce was strapped up to about every machine possible for his lungs, kidneys, and heart to sustain him comfortably.” Then, Ben said, “We just sat there—loving him. Waiting.”
Ben said the doctors had meetings to try to resolve tough situations in the hospital. The doctors wanted an echocardiogram of Pierce, which would get a picture of his heart and his breathing, as a way to see if he had a hypoplastic lung as well.” Then, Ben said, “Finally, they pieced together a picture of his heart that day to reconfirm everything. Our families were in the waiting rooms. The pulmonologist pulled us aside and confirmed for good that his lungs definitely couldn’t handle the life-saving surgery he needed.” Ben paused, then continued,
“Noelle kept saying ‘He (God) didn’t give me ONE of the things I asked for. I mean nothing.’
She was so severely disappointed, broken on the floor wondering how God could have abandoned us in this situation.” As they talked, the intense pain from over 4 years ago was clearly brought back vividly in their hearts. The prayer they uttered in desperation over Pierce’s failing body was in broken desperation. “I prayed with what felt like zero faith,” said Noelle. “I just didn’t have anything left.”
The next morning Ben said, “Dr. Garcia, his heart doctor, said ‘Can I have a word with you in the consult room?’” Ben and Noelle walked slowly, knowing the doctor was bringing them to the consult room so that they could be alone to process more bad news. Then, Noelle said, “She said, ‘I’ve got good news and bad news.’ I stammered, wait, GOOD NEWS? The doctor went on, ’When he was born, his left side was 15-20% of the size it’s supposed to be. ‘We finally got a new pic of his heart today—it’s 75% of the size it should be.’” Ben said, “Noelle and I just stood there.” Then, he said, “The doctor went on, ‘He still has a coarctation of his heart. It’s an easy surgery, you go into the side and the repair is pretty standard. It’s honestly impossible to explain it. We’ve seen growth like this over years but not in a few days.’” Ben and Noelle were overwhelmed. God had just marveled the doctors with their son.
Ben said, “It was just kind of crazy after that. A few days later, the nurses were doing rounds and we overheard them. The nurses said, ‘It doesn’t look like coarctation of the heart.’” Noelle said she chimed in on the conversation with a surprised face, “Wait! Did we just hear no coarctation? What?” The nurse told the couple to hang on, as she didn’t want to get their hopes up. Sure enough. In fact, Pierce’s heart was just great. The team literally had to kick them out of the NICU in the cardiologist department because Pierce had nothing that needed done to his heart anymore.
In total, they were there 5 weeks and the team didn’t have to intervene with one surgery—not one. Later on, the couple said Pierce ended up having a surgery for a tethered spinal cord, but nothing with his lung, kidney or heart! They found out he had a horseshoe lung and it actually does the work of both lungs. When the doctor who delivered him came back to the hospital and ran into the Kilgores, Ben said, “She said ‘What are you still doing here?’ She was in shock. All the nurses were believers and they knew. It was a miracle from God,” finished Ben.
The Kilgores weren’t even sure how to share the depth of emotion they had been through. It wasn’t a roller coaster ride, unless roller coasters only go down and down and further down and then all of a sudden just before hitting the bottom, shoot back straight up to a height beyond the roller coaster’s rails. It was a work of God. There was no other explanation for Pierce’s recovery. He went from palliative care to make him comfortable to scheduled to go home with his family. Some miracles are so far beyond our understanding that we have to fall to our knees thanking God and praising Him for what only He could do.
The Kilgores have gone on to adopt two biological siblings of Pierce, Rosie, now 2 and Merrick, almost 1. Each have their own beautiful stories confirming for them that God knit these children together in their mother’s womb knowing full well they would become a family. Psalms reads “You made all the delicate, inner parts of my body and knit me together in my mother’s womb…You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me, Oh God. They cannot be numbered.” (Psalms 139:11-17 NLT).
Noelle said their family means everything to them. They couldn’t imagine doing life without their amazing children. God has so richly blessed them.