It was one of the most difficult moments of my life. Shawn and I stood with Majors Alan and Cheryl (our pastors) in a hallway at St. Francis Children’s Hospital in Tulsa, OK. In a few moments two-month-old Benjamin would be taken back for open heart surgery. I held him close to my chest, while two nurses patiently waited for us to give our son some final kisses and cuddles. With an aching heart, I handed my tiny baby to one of the nurses, not knowing when I would hold him again. She looked at me compassionately and assured me, “We’ll take good care of him.” I nodded in appreciation as the tears welled up in my eyes. After we watched them disappear with Benjamin, we turned and walked the other direction to the waiting room where we would stay for the four-hour long surgery. I felt like I was in a bad dream, but I knew I wasn’t going to wake up. This was real.
It started a week and a half prior on July 6, 2009. Benjamin had only been home for a little over two weeks when we took him to his first cardiologist appointment. After looking at our son’s heart through an echocardiogram, Dr. Kimberling told us it was essential that Benjamin have surgery in the near future. If his condition was not treated within 6 months, it could become fatal. He said he would discuss Benjamin’s condition with the heart surgeons at their meeting on the 10th, and he would get back with us. Shortly after that meeting, we received a call from his office giving us a number to call to set up a consultation with the heart surgeons. I made the call on the 13th, expecting to set up an appointment for discussion. Shawn was at work when I called, and my father-in-law D.J. was visiting but would be leaving in the morning to head back to MN. He was out getting a repair done on our car, so I was alone in the house with Benjamin. I was not prepared for the information I received on the other line. There was not time to set up a consultation. Dr. Nikaidoh, the best heart surgeon available, would be going out of town shortly, so the surgery needed to take place that week. In the numbness of my shock, I wrote down the necessary information. We needed to report to the hospital on Wednesday the 15th for pre-operation procedures and surgery would take place early in the morning on the 16th. They assured me that this surgery was routine with a very low risk rate, and we could expect Benjamin to be discharged in 5-8 days. I hung up the phone, the reality started to sink in, and the tears began to fall. I wasn’t ready to have my son back in the hospital; he had only just come home. Through my tears I called Shawn and shared the news, which stunned him as well. Shortly after, D.J. returned to the house and presented me with a little Winnie the Pooh plush toy with a rattle inside that he’d picked up for his grandson. Fighting to contain my emotions, I told him what I had learned. He just listened, not knowing what to say. The next morning he was supposed to be on the road at 9:30 in the morning. Instead he held Benjamin for close to two hours, finally relinquishing him to me and heading out late in the morning.
The next day before leaving for Tulsa, I sat nursing Benjamin in his nursery, knowing this would be one of the last times I would hold him to my breast before surgery. Benjamin was only clad in a diaper, so we could have some skin to skin contact. I looked down at his smooth little chest, knowing that the next time I sat here with my baby I would see a long scar. That afternoon was horrible. Benjamin had to have blood drawn for surgery, but due to his long stay in the NICU, all of his good veins had already been “tapped.” It took four sets up people to finally get blood drawn from him. The first attempt was made by hospital nurses, the second attempt by pediatric nurses, the third attempt by a surgical assistant, and the fourth and finally successful attempt was by one of the heart surgeons herself-- she had to make incisions in his hips. Due to the small space, we were finally asked to step outside, though we could come in to hold and comfort our son between the failed attempts. While standing outside, Shawn and I held each other as the tears flowed, while we helplessly listened to our son’s unbearable screams. We were completely drained, and we hadn’t even got to surgery yet.
That night a good friend came into town and took us out for a nice dinner before we settled in to get a little bit of sleep at the Ronald McDonald house; (I couldn’t believe we were there again so soon). Before laying Benjamin down for the night, I nursed him one final time. He wasn’t allowed anything after midnight, and I knew the morning would be difficult for him. As I lay down and tried to sleep, I felt the familiar beginnings of heartburn and acid reflux that had been plaguing me since shortly after Benjamin’s birth. The late night meal and the overwhelming stress had triggered a major attack. I was up for the next several hours in misery, getting sick in the bathroom and feeling as though my chest and back were being repeatedly stabbed with blades. I cried and paced and prayed; this felt like too much to handle on the eve of my son’s open heart surgery. When the symptoms finally began to subside, Benjamin began to stir. I held a pacifier to his mouth, hoping we would fall asleep again. When Shawn took over for me, I crawled into bed, hoping to get one or two hours of sleep before we had to have Benjamin to the hospital. I was exhausted.
After checking in at 5:00 am, we were directed to a room in the pre-surgery wing. It would be 2 hours before Benjamin was actually taken back for surgery. He was hungry and angry and screaming. In between trying to hold and comfort him and trying to listen to the nurses that came in and out, I somehow managed to doze off for awhile. Soon, Majors Alan and Cheryl arrived to sit with us through our difficult day. We were so thankful for their presence. When it was finally near time for surgery, Dr. Nikaidoh came in to meet us, speak with us, and pray with us. An elderly Japanese man in excellent health, he is a world famous heart surgeon who has traveled the world teaching his own procedures. He is also a strong Christian man, and he so encouraged and blessed our hearts as he prayed over our little boy, thanking God for His plans for Benjamin’s life. We learned later that he will not begin anything in the surgery room until he and his team pray together. We were even more blessed to learn that Dr. Nikaidoh had only been in Tulsa for less than a year. He had planned on retiring, but felt led to come to Tulsa first. We felt as though God had sent him for us!
During the four hour wait, we were kept updated on Benjamin’s progress each hour through a phone call directly to the waiting room. We were thankful for each good report. When surgery was completed, we were told we could stand in the hallway, and watch them wheel our son by to the PICU, but we would have to remain in the waiting room a little bit longer before we could go join him. As we watched the surgical team pass by, we tried to get a glimpse of our baby, almost hidden in the giant hospital bed and array of tubes, wires, and bandages. When Dr. Nikaidoh saw us, he simply pointed to heaven and said “He is good.” Shortly after, he came to the waiting room with a hand drawn diagram and explained Benjamin’s surgery to us step by step. We couldn’t have asked for a better surgeon!
When we finally were able to join our son, we weren’t quite prepared for what we saw. A large tube came out of his chest, draining excess blood from the surgery site. He was hooked up to so many tubes and wires—so many more than he had in the NICU. He was on a ventilator again and heavily sedated. We were told he would be on the ventilator for a day or two. However, due to complications with fluid retention and pulmonary hypertension, Benjamin remained on the ventilator for another nine days. His 5-8 day projected stay extended to a two week stay. It was a long two weeks. During the height of his fluid retention, we could hardly recognize our son; he was so puffy. My arms ached to hold him again, almost more intensely than they had the first week after his birth. I know knew what it felt like to hold him close to me, and I longed to hold him again. Though I wrestled with some guilt for not staying in the hospital with Benjamin, Shawn and I decided it would be best to stay in the Ronald McDonald house a block away, so I could get rest. I was exclusively pumping again, and I had to have rest to be able to maintain my supply of breast milk. The days were long and lonely as Shawn had to return to work and he was not able to come up to be with us every day, though he came as often as he could.
I filled the days with talking to my son, reading books, watching HGTV, and visiting with the PICU nurses and other families who had children in the PICU. The nurses and doctors were so loving and intentional with Benjamin. They clearly explained answers to all my questions and even offered information when I didn’t ask any questions. One day I had some surprise visitors from a local support group called “Mended Little Hearts of Tulsa.” They brought a gift bag and offered encouragement. Their visit was like a breath of fresh air. We also received so much love and support from family and friends, just as we had during Benjamin’s NICU stay. We were surrounded with reminders of God’s love.
Benjamin was finally well enough for his second home-coming on July 29, 2009. His chest scar healed beautifully, and he was such a bright-eyed and alert baby compared to his constant sleepy state before his surgery. The reports from his follow-up appointments with his cardiologist have been good. There is no reason to believe he will ever need another surgery. His heart has truly been mended!
A few months after we brought Benjamin home from surgery, some wonderful friends came over to talk with Shawn and me. They lovingly shared, “You have both been so wounded. You need to be intentional to seek healing for your hearts, so you don’t get stuck in this place.” Their words resonated deep inside us both; we knew what they said was true. We were existing day to day, numbed by our pain, confusion and disappointment. We had not lost our faith in God, but we weren’t moving forward either. So, we took our friends’ advice to heart and began to position ourselves before God, asking Him to heal us. We poured out to Him our emotions—anger, confusion, grief, fear, etc., knowing He was big enough to handle it all. We attended some weekend classes offered at a church in Tulsa on healing the heart and mind. Most importantly, we set aside at least a few nights a week to be still in the Lord’s presence. We would pop in a worship CD, lay on the furniture or floor and just “soak.” Often, it felt as though nothing was happening. Sometimes we would fall asleep. But, bit by bit, our hearts began to come alive again, and the thick fog began to clear.
Sometimes we would experience powerful things as we waited in the Lord’s presence. The most significant for me happened one night as I lay on the couch and listened to the worship CD play. Suddenly the image of handing my baby to the nurse before surgery flooded my mind, and I felt the rawness of the pain again. In my heart I prayed, “Jesus, where were You in that moment?” In my mind’s eye I suddenly saw myself handing Benjamin to Jesus, and He carried him back to surgery. My heart was overwhelmed, and as the tears flowed, I felt the sting of the memory begin to fade. The guilt I felt for not being with Benjamin 24/7 surfaced again as well, until I heard the Holy Spirit whisper to my heart, “I never left his bedside.” Oh, how good my God is! He is full of compassion and so intimately aware of everything that concerns me. He loves my son so much more than I ever could, and the knowledge of His constant care for Benjamin has brought so much healing to my heart! In the natural, my son has a “mended little heart.” In His patience and love, Jesus is in the process of mending mine. I know He is faithful to complete what He has started, and I am confident that He will never leave my side.
"For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord."--Romans 8:38-39 (NKJV)