Although there are many things I don’t recall, fear is one thing I remember well from the first few days of Redmond’s life.
Unplanned c-section because the baby was in distress. Baby taken from me without so much as a glance. Phrases like “very sick”, “breathing problems”, “Down Syndrome”, and “NICU” scatter through my mind.
Day two of his life, words like pulmonary hypertension and oxygen levels suddenly became things I needed to understand. Lungs and heart that weren’t working right. Ventilators, nitrate, blood sugar, monitors, and nurses and doctors and help. Lots and lots of help.
“Sickest baby in the NICU.”
I was so numb and confused, in shock, the words barely phased me. But they got the attention of the nurses and doctors who cared for me after my c-section. Suddenly, less than 24 hours after surgery, I was showered, dressed, given a fist full of prescriptions, and driven to the NICU an hour away to sit with my baby, hold his hand. The baby’s doctor stared at me in shock. “Why are you here. In JEANS?” I wasn’t sure where else I was supposed to be or what I should’ve been wearing. I wasn’t sure what I was supposed to do. He gave me a lecture about how I needed to take care of myself if I was going to take care of my baby. I was to eat regular meals, sleep as much as I could, and not push myself too hard. I was to remember that I’d just had major surgery and take it easy.
I heard the doctor and followed his orders. Through blind tears, I allowed myself to be wheeled around in a wheelchair, driven back and forth from the hospital to the Ronald McDonald House, and told when to take the medications I needed for pain. I tried to sleep, but had to wake up to pump every few hours. Then I’d wake up in a panic every morning, wondering what was happening with my baby and how I could just leave him in the hands of strangers.
The numb confusion started to lift when the phone rang early on the morning of his third day of life. We’d been told the night before that he’d made it for the first 36 hours, so he was not likely to need to be transferred for the one kind of care our hospital could not offer. But when the phone rang, we learned he was to be transported to a bigger hospital, about 40 miles away, to have the chance to go on a heart and lung bypass machine. He might not need it, but they didn’t want to wait any longer to chance it.
Redmond was very sick. He needed more help than what he could get at the hospital he was in. Suddenly, I was very aware that this was serious. My baby might actually die. I jerked into action, signing papers and asking questions and trying to focus on what each person said to me.
Emotions flooded over me. Guilt. So much guilt. I was 41 years old and the likelihood of Down Syndrome increases exponentially with the age of the mother. I had gestational diabetes that wasn’t well-controlled, in spite of my efforts. He had complications from that. If I had been in better shape. If I had tried harder. If I had listened to my gut and ignored the strange rules from the doctors and nutritionists to eat carbohydrates, he wouldn’t be so sick. Shame. I was so ashamed. Memories of studies I’d read stating that the age of the father is now known to affect the baby’s health as well flooded over me. My husband was 52.
Illogical, panicked thoughts woke me up with a jerk every time I fell asleep. I was like King David of the Bible. God took the son of King David and Bathsheba. David fasted and prayed for the child’s life, but when the baby died, he got up, washed, and ate. In my muddled state, I forgot that David was punished by God for serious sin – including murder and adultery. My son was not the result of any sin, but I had irrational thoughts that he would die and I’d have to get up, wash my face, and get on with life. (I discovered that one of the medications I was taking for pain sometimes caused people to have terrible dreams and jerk awake in a state of panic.)
I flew down to the baby’s room at the crack of dawn, walking rather than taking the prescribed wheelchair (because my husband wasn’t moving fast enough for my panicked mind), nearly hyperventilating with fear. I couldn’t breathe. I just knew I’d arrive in his room to find him gone, hospital workers waiting to tell me in person, rather than call and disturb the last peace we’d ever know.
But there he was, laying quietly, an enormous machine run by four people beeping and humming, keeping him alive. ALIVE.
I dissolved into tears, breathing for what felt like the first time in minutes, barely able to stand with the relief that flooded me. As they stared at me, I tried to explain. But the words wouldn’t come. Instead, I stumbled to his bedside, took his limp and swollen hand, and poured out the words that God placed in my heart in that moment. God had felt so far away from me, but in that moment His presence rushed in and I spoke truth.
“Redmond Samuel Wyse, you are a gift from God. Every moment of your precious life is a gift. And whether I have you for six days, six months, six years, or a lifetime, I will be grateful for every single moment. You are an answer to my prayers, and I cherish every moment I’ve had with you – every moment of that horrible pregnancy, and every fear-filled, terrible moment since you were born. You are a gift and I’m grateful for you.”
And with those words that I hadn’t felt just moments before, things changed. Love rushed in, replacing numbness and thoughts that maybe it would be better if he didn’t make it. Love replaced efforts I’d been unwittingly making to protect my heart from the pain of losing him. Love reminded me that in Christ, every life is precious and worthwhile, even the lives of babies with Down Syndrome, congenital heart defects, and pulmonary hypertension. Love rushed in, reminding me that God is greater than any fear, any doubt, and any lie from Satan.
That was very early on a Sunday morning. It would be six very long days before he’d be taken off the heart and lung bypass machine. It would be six scary days of praying that he wouldn’t have a bleeding event. It would be six days of feeling helpless, eating hospital food that was brought to me, pumping to provide milk for him when he was able to eat, sitting on bright orange chairs in front of large windows that overlooked a massive cemetery, riding in a wheelchair back and forth to the Ronald McDonald House, jumping every time the phone rang. But on the sixth day, he was taken off the machine and his heart and lungs functioned well enough to stay off it.
The next day, when he was ten days old, I was able to hold him for the first time. I cried the ugly cry, tears and sobs and gratitude all mixed into a snotty mess. He was covered in tubes, wires, cords, and contraptions. It took three people to pick him up to place him in my lap. His ventilator was pinned to my shirt. I couldn’t get close enough to kiss him until they put him back, at which time the nurse held his little head close to mine for a quick kiss. But I was holding him. I sang him songs and marveled at his tiny body, then fell asleep in a blissfully rare moment of relaxation and joy.
For a week after that, I was able to hold him once a day. One time, Rick held him, although he grumbled quite a bit about it, worried he would pull on one of the tubes going in and out of him, worried he might break the fragile boy.
When he was four days old, the day they put him on the bypass machine, I called my in-laws and asked them to bring the older kids up to meet their baby brother. I was seized with fear that he would die before they got to meet him. It suddenly became a terrible fear. How could I explain to them that the baby died if they never got to see him alive?
And so they came, arriving just moments after Redmond’s surgery to have giant tubes inserted into his neck. The tubes allowed blood to be pumped out of his heart, artificially oxygenated by the machine, then pumped back into his heart. It was a terrible time for a visit, straining the nerves of the nurses and specialists, but still very important to me.
The kids were held up by their daddy, allowed to touch the baby’s hand, and then taken out quickly. We went to a play area in the hospital where the kids could get out some energy. I sat in my wheelchair and cried, the numbness worn off, so very sad that my baby was fighting for his life in another part of the hospital. Sad that I couldn’t run and play with my older kids while I had them with me. Sad that I had ruined our perfect, lovely life, free from hardship and pain.
A few days after the bypass machines rolled out of his room, the fear in my heart began to let loose a bit. When they took him off the ventilator, the fear let go some more. Every step along the way, fear has had to go, little by little.
Today, at home with weeks having passed without any need for hospitalization, fear only pops up from time to time. It’s still hanging around, but it isn’t hovering, dark and sinister, taking up all the space in my mind.
“God hasn’t given me a spirit of fear.” It’s the truth. Fear isn’t from God. But it’s very real when a baby’s life hangs by a thread. God gave me ways to manage fear and get through it, but it was very real and present.
Those early days in the hospital, I kept looking around for someone to come and offer me a temporary fix for the fear and sadness. Where’s the wine? Where’s the Xanax? Where’s the massage therapist to work the stress out of my muscles? Where’s the counselor to help me with these crazy thoughts?
The people that kept showing up, over and over again, were my church’s pastors. They prayed. They sat and listened. My sister and mom helped me remember that in the worst of times, we laugh to get through it. We find the funny, even through our tears. The nurses and doctors didn’t offer me a temporary fix. I didn’t take one nerve pill, didn’t drink one drop of alcohol. I slept. I ate. I leaned hard on my husband. I sang praise songs. A few days before we left the hospital, I got a massage. A social worker showed up one day and helped me work through some of my guilt and shame. Then I never saw her again.
I don’t know how to wrap up this post. I could write and write and write. I’m not sure I’d ever run out of words. In fact, I have written and written. Thousands of words. I try to edit them down and just write more. In the coming months, I’ll try to post them. I’ll try to share a bit of what this has been like. And you’ll have to forgive the repeats and the stumbles and the grammatical errors. Or point them out to me so I can fix them later.
All I know to say in closing is that God has not given me a spirit of fear, but fear snuck in anyway. What God did was help me through my fear. What God continues to do today is help me through the fear. Gratitude is slowly taking over as I cuddle and nurture the sweet, sweet baby boy He placed in my arms. My heart is at peace.Read More