The Dreadful Holidays

I turned to Cameron today as we made our way down to Fort Worth and asked, “Do you remember the first time we came down here?” He said he couldn’t remember. But I could see it vividly. The highway was still in the same constant state of construction, skies were the same typical winter gray, and the trees were nearly bare along the side of the road. Last year, I  looked up on the new large city with the new large hospital and dreaded every bit of it. I knew it was December and that the hospital would be decorated extensively for Christmas. Nothing about Christmas last year felt exciting. I just sat wishing every day to slip by unnoticed.

For many of us, we look toward the holidays with dread, fear, anxiety, sadness, or depression. We know that something will be “off” or “not usual” this year: the empty seat, the foreign food, the missing companion, or like us, the strange location and uncertain prognosis. We spent a quick time at our usual family Christmas and then hurried down to the children’s hospital to spend a few hours holding our twins. Charlie ended up “clamping down” or having a “code blue” moment on Christmas, a trend he continued on every holiday in the hospital. So I completely understand dreading holidays. I understand wishing everyone would not make such a big deal about it and let it pass by quickly.

I also understand the feeling of guilt related to the holidays. I felt guilty for not caring about Christmas. We didn’t feel happy enough to shop in stores. We didn’t take the kids to go see Christmas lights. I asked Evelyn last week if she remembered if we put Christmas lights up, we didn’t. There can be such guilt for being unhappy during the holidays. Our culture demands this to be “hap-happiest season of all”! For the world, it is because this is the season of thankfulness and giving (but being happy seems to rely a lot of receiving). The Bible will tell us the truth that this season is the greatest because it is the remembrance of the birth of Jesus, the savior of the world.

I was aware of this truth but it didn’t change my constant apathy about the “festivities”. During this time last year, we have had to remind ourselves of what is true. These truths were the grounding forces for my mind when it was so easily going adrift. And so if you dread these coming holidays or are already singing Christmas carols in the shower, I give you four truths and tips that I found helpful.

1. God loves me, even if I missed 20 of the 25 days in the advent calendar. It ok to forget about traditions, skip the work holiday party, shop for all your gifts online, or forego sending family cards. You’ll hear about everyone else doing all their merry, cheery activities and perhaps feel guilty that you aren’t and really don’t want to. God’s love for you is based on Jesus, and absolutely nothing you do (or don’t do) and certainly not based on your emotions (for the most part). But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. Romans 5:8

2. God often provides ways you can show love despite feeling dreadful. Eating cafeteria food on Christmas was far from glamorous but spending hours of Thanksgiving and hours of Christmas with the staff in the hospital was surprisingly delightful. They dreaded going to work on that day, we dreaded having children there but with that “misery loves company” idea, we had a great time. Therefore, as we have opportunity, let us do good to all people… Galatians 6:10

3. That leads me to this key point, perhaps it’s time to change your expectations. What you see your friends do with their family and friends for the holiday can create a sense of false expectation for your life. Pictures with Santa! They are so cute, can we take Charlie to Santa this year? Um no, germs, gross. Even the amount of gifts one gives another or one receives can make you have false expectations of your loved ones. Just ditch it. You do you (in this sense, because that little motto is terrible advice in almost all other areas of life). For we brought nothing into the world, and we can take nothing out of it. But if we have food and clothing, we will be content with that. 1 Timothy 6:7-8

4. For those who are joyfully looking forward to the holidays, don’t forget those who are not. The hospital is still full of children and adults in which that day will be dreadful. There are homes with empty seats. There are remorseful people behind bars unable to get home. There are homesick students unable to pay the fare to go home. Do what you can. Do what you are lead to do. Don’t worry if it might be “cheesy” or strange. It’s not. We were on the receiving end of what people thought would be odd. But we smiled on Christmas, because even if we didn’t have everyone around us, we knew we were not alone. And to the anonymous person who left us a year’s worth of “loose change collection” (with a book about the Christmas Jar), we tearfully thank the unknown giver. Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 2 Corinthians 1:3-4

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.

Defective Heart

IMG_6604“Well it is called a defect because it is a hole and it is not supposed to be like that.” And so began just another typical conversation with one of Charlie’s doctors. This time the doctor was telling us more about a hole in Charlie’s heart called an atrial septum defect. As he began to explain and draw diagrams to explain congenital heart disease, my heart began to sink. Another ounce of bad news. But then the conversation took a sudden change, “kids with a hole actually do better than kids who do not.” What? We like the defect?! The explanation began about how beneficial this problem is in light of a bigger issue (Charlie’s pulmonary hypertension).

It reminds me of the end of Genesis and the story of Joseph reconciling with the brothers that betrayed him. “What you meant for evil, God has meant for good.” It has been preached a million times about how to thank God for the hardships of life. It’s almost an easy concept to accept. We cling to that hopeful note when any hardship comes. Once the suffering is over, we begin to cling to our comforts and ease. There is never the asking for hardship and suffering. But should there be?

Suffering produces character. We know that character is good. We want to develop character with books and reading and listening to sermons and painting pretty pictures. But it just doesn’t happen that way. The pearl is developed with the irritating grain of sand. The gold is refined by the blazing heat of fire. The tomato plant brings forth fruit after it is beaten. Our lives produce godly character when we suffer.

Joseph was left for dead and thrown into slavery because of the actions of his brother. Charlie’s heart did not develop correctly because of the malnutrition from his inadequate share of the placenta. Each day our lives are weighed down with medical needs and decisions, we are emotionally drained, and constantly tired because Charlie has more needs than a person can manage. But what is one of my greatest fears? That life will be easy when he outgrows his trach and vent.

I want Charlie’s body to be healed but I also want more of these opportunities to be forced to develop character. Christ is better glorified in me when I look a lot less like myself. So what keeps us from asking God to develop character in us…by any means necessary? Maybe fear. I am often afraid I will not be able to tolerate the next wave of suffering. Maybe it is pride. I’d rather be comfortable and not have to rely on God. Maybe it’s laziness. Before Charlie, we didn’t have many major health issues that interrupted our day and I certainly didn’t want to go looking for any inconveniences from other people’s lives.

But deep down, when my thinking is clear, God lets me know that this present suffering is the answer “YES” to my prayer years ago. “Lord, don’t let me have an easy life.”

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.

We

I typically do not eat breakfast. Most of the time it is because I am not hungry for the first few hours of the days. More often it is because I forgot while tending to the kids or dogs or other living beings in our house. Cameron wakes up starving and immediately cooks a large, calorie packed meal. Life is too constant for me to deal with something as trivial as eating.

Thankfully, many friends bring donuts to our house during the week. They check in on us and most questions to us revolve around Charlie and his health and his needs. He’s definitely the “neediest” so we aren’t bothered by this focused attention. I have a handful of friends that are gifted in asking questions and they venture to ask how we are doing. We? Well, I haven’t had much time to think about it. We, we are surviving. Continue Reading ›

The Second but Last Trimester

After learning that we were having identical twins which were not sharing the same amniotic sac, we nearly skipped out of the doctor’s office with glee. Morning sickness was tolerable and overall I felt pretty good. This continued for the next 4 weeks or so.

Despite dodging the “monoamniotic twin” scenario, identical twins get an extra dose of precaution with a second OBGYN to monitor the pregnancy. Around the 14th week, we began seeing a high-risk pregnancy doctor, also known as a maternal fetal medicine doctor (MFM). At one of the first appointments, we had a blood test done to detect genetic disorders and from those results we learned our twins were boys. We were so excited and almost immediately decided Twin A would be Jack and Twin B would be Charles or “Charlie”. Continue Reading ›