It didn't take long before we were faced with our first medical decision for Jonathan. Before he was born, we knew he had a potentially fatal combination of hydrocephalus and a posterior encephalocele. However, only hours after his birth, we had to address a previously unknown issue. There was about an inch of his small intestine protruding from his belly button (a gastroschisis), and without surgery, he would not be able to process food normally.
If he couldn’t eat, he wouldn’t live. So when the doctors asked if we would like to move forward with the gastroschisis repair, it took us about two seconds to say yes. It was actually just a warmup compared to what we would face further down the road, so it was good that our first medical decision was a no brainer.
After meeting with the pediatric surgeon, it seemed like a straight forward procedure, but the thought of surgery on your newborn son was frightening. It was after midnight when they took Jonathan back for the procedure, and I can remember the feeling of helplessness. Any surgery is a risk, so add the fact he was so fragile, we didn’t know what to expect. Lauren and I waited in our room and were eventually awakened by the surgeon in the early morning hours after a brief sleep. With our brains still clouded in a haze of exhaustion, the surgeon casually placed a photograph in front of us. Look…it’s Jonathan’s intestinal tract outside of his body and lying on his stomach. Not exactly what I was expecting to be the surgeon’s opening act, but it broke the ice quickly as he cut straight to the chase.
The surgery went exactly as planned, and it was supposed to be about 10 to 12 days before he could take food by mouth. He wasn't extubated afterward as they weren’t sure how well he would be able to breathe on his own. Removing his breathing tube would be re-evaluated the following morning. It was a difficult night of sleep as the prospect of Jonathan not being able to come of the ventilator was heart wrenching. There now existed a possibility that we would have to make life and death decisions sooner than later if mechanical support was his only chance at life.
After a night of prayer, and the request for more from our growing number of supporters, morning came. Here he was, just over a day old, recovering from his first surgery in his already fragile state, and his strength was about to be tested. Out came the breathing tube, and he handled it like the warrior that he was quickly proving to be. And just like that, Jonathan was breathing on his own, and we exhaled a collective sigh of relief.
Even though Jonathan was unable to take food by mouth for 10-14 days after the surgery, Lauren once again showed her strength and forward thinking when it came to making the best decisions for him. She continued to pump and store milk because we were able to administer mouth treatments of breast milk with a q-tip. She felt strongly that by doing this, the antibodies of the milk would cross the membranes in his mouth to bring him the immune response and other benefits. Amazing.
Because I don’t want Jonathan’s story to read like a medical journal, I won’t go into detail about every specialist visit and their prognosis in the NICU. Let’s just say his first week was peppered with genetic and neurosurgery specialists, plastic surgeons and neonatologists. With every “meeting”, I felt beaten down a little more and stuck in a cloud of potential future decisions that seemed impossible to digest. The most indelible mark left on my memory of specialist interactions came just after Jonathan was a week old and our neurosurgeon had a chance to review his MRI results. He walked five paces ahead of us as we wound our way through the familiar path of the NICU, slightly turned his head over his shoulder and began to explain his findings in a delivery not so subtle or quiet. “In 35 years as a neurosurgeon, Jonathan has one of the most, if not THE most disorganized brain I have ever seen.” OK. Thank you for the honesty??
The bottom line was that aside from the fact that he had no heart, lung or other organ issues and one neonatologist acknowledging how strong his constitution was, he still had a poor long term prognosis. According to the neurosurgeon, we could expect him not to walk or communicate. Seizures would likely be a part of his future, he would eventually have problems eating and Jonathan was most likely cortically blind (eye structures were normal, but his brain would not be able to interpret was he sees). At this point, Jonathan's brain stem was in control of many reflexes like moving, breathing, and sucking. As time passed and higher brain function was needed for more complicated tasks, it would begin to show us what his brain was and was not capable of. At this point, we prayed for discernment, strength and the peace to know that we would be making the right decisions for Jonathan. We felt God had spoken to us many times up to this point, and we prayed our hearts would be open to hear what He was trying to tell us.
I have to say, amidst all of the negative energy related to Jonathan’s prognosis, our NICU nurses remained steadfast in their belief that children were capable of amazing doctors every day. I still remember the words of one of the most veteran nurses. She had the most stoic personality of all the “angels” that cared for Jonathan but shared some of the most hopeful words. “I don’t think he’s going anywhere soon…he has a bigger story to tell.” As hard as it was to believe that statement, it helped keep a glimmer of hope alive deep in my soul. I can’t say enough good things about how important our nurses were to us during our entire stay in the NICU.
Eleven days into Jonathan’s life, we had been traveling down a dark path. Faithful prayer and our unrelenting network of support helped make those rough seas navigable. My Mom and Mother-in-Law had visited Jonathan just about every day since his birth, but since Tyler was only two and a half, he wasn’t allowed to visit. Because we still weren’t sure Jonathan would ever come home with us, the hospital agreed to coordinate a visit for Tyler to spend time with Jonathan in a room located just off the NICU. The only time he got to see his little brother was for a brief moment right after he was born. We had prepared Tyler for the possibility that Jonathan may not ever come home, and may go to Heaven to be with God because we was very sick. As strange as it may sound, he seemed to process and accept that with the maturity of an adult.
We rolled Jonathan in his crib from the NICU, through the secret double doors on the back side of the unit, down a short hallway and into what seemed like a small high rise college dorm room. Lauren’s Mom, my Mom and Dad and Tyler were all there to spend time and take some photos with Jonathan.
What came next was one of the most moving sights you could ever witness as a human. As Lauren lifted Tyler up to the crib, he reached down and carefully laid his hand on Jonathan’s chest. He didn’t look scared or worried or sad. He then reached out and gently touched Jonathan’s upper lip and was quick to put the pacifier in Jonathan’s mouth the second he became anxious. Tyler’s face and gentle touch were filled with compassion, kindness and love. In that instant, I believe Tyler became Jonathan’s protector, and to this very day, his commitment to his brother is unwavering. Even when we asked Tyler if he wanted to hold Jonathan, he immediately said yes. Tyler sat, and we laid his fragile little brother against his chest, and he simply held him, quietly leaned his head against Jonathan’s forehead, and offered his thumb for Jonathan to hold. Jonathan reciprocated, gently holding Tyler’s thumb, and they sat there peacefully. You got the feeling Tyler sensed Jonathan’s fragility, and there was no doubt in my heart that Tyler was aware of the gravity of this moment. Our dimly lit path was now getting a glimpse of its first light…and that light came from the beauty of a big brother and his unconditional love.