Birth Day and following

During my time at the hospital for magnesium treatments, a young nurse tended to me. When we were sent to the hospital to deliver the twins a few days later, she was on duty and assigned to my surgery. She was with me when I sat on the metal table being prepped for anesthesia. They told me to lean over my belly and she wrapped her arms around me to keep me still. I began to sob into her shoulder. I was terrified.

My obstetrician came into the room and said, “You’ve done a fantastic job keeping these boys in for so long. Now it’s my turn to help them.” It was the only encouraging comment that had been made to me that day. The surgery began, Cameron was brought into the room, a new face appeared at my side, it was the neonatologist, Dr. Sidebottom. We had met Debbie, the neonatal nurse practitioner, in my room a couple hours before. They wanted to know every detail about the twins and what to expect. The NICU teams were being assembled. Each twin would have their own respiratory therapist and set of nurses. We did not know this at the time but the doctor had prepared the team with the instructions that Charlie was highly unlikely to survive and perhaps was too small for the equipment needed to keep him alive.

The time came for the delivery portion of the c-section and I could hear my doctor telling the nurses to be ready for Twin A. A tiny squeak. I could barely hear it. It was Jack crying. The team rushed to tend to him. Everything was in motion now. Cameron was next to me saying that Jack had been born and reassured me that the tiny sound was him. A minute later we heard the same tiny squeak. Charlie was alive, and in the most shocking turn of events, he was crying. Only God could have performed this miracle of life. The twins were assessed, hooked up to their equipment, stopped for a moment’s glance at my side and off to the NICU. The next part of the surgery was very uncomfortable.

We went to post-op recovery where the effects of the medications made me shiver violently. The weight of the situation sunk in again and I wept over and over. Many times during the pregnancy we had prepared ourselves to mourn the loss of one or both twins. Even now, there was a sense of grief about the loss of a normal pregnancy and birth. Cameron was allowed to go to the NICU and see the boys. I was not stable enough to visit and settled for looking at pictures when he came back. They were tiny. Charlie was just over 1 pound (650 grams) and Jack was just over 2 pounds (950 grams). Their skin was transparent and they had zero body fat. Their heads were the size of a clementines and I couldn’t help but feel disconnected from them. They did not look like the typical newborn baby.

The next morning they used a wheelchair to help me go to the NICU and it was happy and terrifying at the same time. We could only put a soft hand on their bodies or let them grip our fingers. Patting and stroking their skin would be painful to them. And so began our NICU journey. Over the next weeks, we would have doctors come and assess them each morning and call us with a daily report. Jack was doing well and on a mild form of oxygen support (CPAP). Charlie was intubated and on a ventilator. Premature babies have a “honeymoon” period for the first couple of days and we saw this as miraculous strength by Charlie to overcome his lung problems. Unfortunately on day 3, the topic of transferring Charlie to Cook Children’s in Fort Worth was first discussed. His ventilator settings were maxed out and he needed to improve within the day to stay. By the hand of God, he did improve. We were so thankful. I went home on day 4 and left the twins for the first time. There is a deep pain that happens when you arrive at the hospital, give birth to a baby, but do not take him home.

We visited the boys twice a day for hours at a time. It was a vigorous schedule and difficult to keep up. We exhausted all the friendships and family relationships we could manage. We needed babysitters for Evelyn and Otto every day in order to see the boys. During this time, Charlie would be cradled in the hand of God as his health would worsen and improve. Back and forth. We held the twins for the first time a couple weeks after they were born. When I put him back into his bed, he stopped breathing and turned blue. CPR was done and I, again, wept.  At this early stage, we had no idea how many times we would see CPR performed on him and how painful each time would be. They warned us that NICU was a roller coaster and it truly was. Some days we enjoyed some improvements like gaining weight, tolerating feeds, lower bilirubin counts, less oxygen support. Other days we would face the results of brain ultrasounds, echocardiograms, increased ventilator settings, need for blood transfusions, and the “clamping down” which is what we called the moments he would stop breathing.

IMG_2612I held tightly to the prayer that God would keep them both in our hometown so that we could visit them each day. I didn’t think traveling to Fort Worth would be doable. On November 29th, we arrived at the NICU as usual but were stopped at the desk to receive a call from the neonatologist. We knew it was bad news. Charlie was not improving enough and it was beyond the ability for the local NICU to handle. They were out of options here. We were too upset to visit the boys and we left. We sat in the parking lot and discussed what needed to happen. He must to be moved to another NICU. We had a meeting scheduled with the hospital staff in the morning. I felt disheartened that my prayer for the twins to stay nearby was now being answered with a “No” by God. I see, 11 months down the road, that His hand was guiding us to the perfect place for Charlie and Jack. Each piece of this complicated puzzle was being laid down perfectly even if we couldn’t understand.

On November 30, 2016, we met with the local hospital staff. This included our primary nurses, the nurse practitioner, the neonatologist on call that week (Dr. Paley), and some of the administration of the hospital. We sat in a private conference room on a restricted floor of the hospital. The diagnosis was discussed further: Charlie had pulmonary hypertension but for an unknown reason. At any rate, they suspected he would need to be in the NICU for at least 6-8 more months. Jack was doing well and would not need to be transferred. The twins would have to be split for the next few months and they assured us that if we must make a choice, that visiting Charlie would be highest priority. “Jack will understand in the end.” How does someone make a choice of one child over another? We cried and asked how much the ambulance would be if we could pay out of pocket. It was more complicated than that. All I could do is place my hope and trust in God who knew the deepest longing of my heart. Then across the table one of the administrators spoke up, “Your family has touched our hearts. The hospital will pay for Jack to go with his brother.” And here, our doctor began to cry.

IMG_3235It took from 10am to 9pm for the transfers to be completed. Using a specialized pediatric transport team from Cook, the twins were moved to Fort Worth, an hour away. We mazed through the back hallways of the hospital, it felt ridiculously complicated. In the months to come, we would become so accustomed to these halls that we learned multiple routes and nearly hidden passages to get anywhere we wanted. I was consumed with the fear and anxiety of this change. God was with us, but I couldn’t feel it. The NICU room was private and suited for twins so they could have a single nurse and quietness. I began talking to the new NICU team and the walls and ceiling where slowly crowding in around me. Why would they build such low ceilings? Doesn’t anyone else feel it moving in? This room is tiny! We can’t stay in here! I can’t breathe…. PTSD had set in for the long haul.

Charlie had an echo done immediately and among the twenty people in our room working with Jack and Charlie, a peaceful face found mine in the crowd. The woman walked over to me and introduced herself as Dr. Nesslein. She was the neonatologist on-call and would be permanently taking charge of our twins. An echo was done immediately and she quickly diagnosed the source of Charlie’s pulmonary hypertension. Everything was simple, routine, and normal for their staff. God was revealing to my heart that though He said “no” to my prayer that day, what He had in store was beyond my ability to comprehend.IMG_3247

Evelyn’s birthday, Cameron’s birthday, and Thanksgiving had all slipped by without much acknowledgement in November. Here, the children’s hospital was magnificently decorated for Christmas. The kids were thrilled to be coming to such a magical place. Praise God for the mindset of children. We went down to the hospital cafeteria, let Otto eat green Jello, and decided not to tell him it was his birthday.

The Future

Today, I answer the most oft asked question, “How long will Charlie have to be like that?” It’s a pause from our posts about the background story. Also, I kept the crying baby out but you can hear my phone ding with text messages. You win some, you lose some. And I need to get my bangs trimmed. I could have brushed my hair a bit. Well, this is life y’all.