The second and even into the third week of our NICU stay was like a never-ending overcast, dreary day with fleeting beams of joy each evening. A late dinner with Tyler, a rousing rendition of “Oh the Places You’ll Go” in my best English accent, and then bedtime for big brother. We wanted Tyler to understand the seriousness of Jonathan’s situation, but we also felt it was important for him to feel like a happy two year old. Thank goodness I married into a family of type A sisters. Lauren’s sister Jill had the vision to organize meal deliveries each evening through www.carecalendar.org. Instead of having to come home, decide what we were going to do for dinner and take the time to make it, we were able to turn those minutes into quality time with Tyler. These many small gestures of kindness combined to make a big impact on our life at the time.
As we entered the second week of August, we had already witnessed Jonathan’s strong constitution and incredible resiliency. After his intestinal surgery, he wasn't supposed to have food by mouth for 10-14 days, but Jonathan was on his own schedule. “How about I start eating on day seven instead?” said the baby who just had his intestines surgically reconnected! We watched him come off his ventilator like a boss less than two days after that surgery too! On day 10, his OG feeding tube was removed and he was only on IV fluids and bottle feedings. By day 18 he was taking a two ounce bottle (with a special nipple for babies with cleft palates), and he really was amazing everyone around him.
With all of the good things he was showing us, the looming issue was centered around his brain. We knew there could be a time where the ventricle swelling would be fatal if Jonathan didn’t have a shunt surgically placed in his brain. The waiting that led up to that decision was mentally and spiritually draining. We knew we were going to have the surgery done when the doctors felt the time was right, but there was a tiny voice in my head that wondered, “What if it’s the wrong thing for Jonathan?” During those moments, my faith had the most influence on my life. I prayed for clarity, and peace with whatever decision was on the horizon. Lauren and I felt led by Him in everything up to this point, and the shunt surgery proved to be more of the same.
By the time August 8th came, the neonatologists were seeing a marked increase in the swelling of Jonathan’s head. We spent the day doing a lot of waiting. Waiting for the neonatologist to consult with the neuro team. Waiting for the neuro team to find an opening with surgery. Waiting to finally make progress with a piece of the fatal prognosis puzzle we were all trying to solve. As the rain continued to fall outside, we finally got the go ahead for surgery. The feeling of relief was quickly replaced with a feeling of helplessness as we prepped Jonathan. We picked up our fragile little child, held him close enough to smell the skin on his cheek, only to have to gently place him back in a sterile crib that would carry him through the sounds of mechanical beeps and rhythmic compressed air on his way to the operating room. Knowing the surgery was the right thing for him no matter the outcome, and surrendering our control to Him was how we were able to find our peace.
We finally got the word Jonathan was out of surgery and in recovery. We were moved to a 10x10 room where we sat on the firm cushions of college dorm room chairs waiting for our neurosurgeon to show up and tell us how the procedure went. Awesome…more waiting. The anxious silence was broken as the metal door handle turned, and in walked the surgeon. A moment of calm overcame the anxiety as he went on to tell us that the surgery was successful, and we would have to wait and see how Jonathan would respond to the shunt. Needless to say, the day was mentally exhausting, and by the time we left recovery, night was beginning to fall.
As we walked out of the NICU doors, we were looking through the droplets of rain slowly moving down the windows that overlooked downtown Charlotte. We continued walking down the quiet hall, and as the downtown skyline came into view, an over-saturated orange and yellow sunset appeared in the midst of lightning and rain everywhere else around us. It only lasted for about two minutes, and then it was a memory. It was the perfect parallel for the storm of a day we had that ended in the small gift of a successful second surgery.
His shunt surgery was on a Monday evening. By Tuesday evening, not only was Jonathan off his ventilator and eating by bottle again, the doctors were indicating that if he continued to progress, he would likely go home by Sunday.
Days earlier we were considering scenarios that included the possibility that as higher brain function kicked in, he would show us that he was not capable of much on his own and that seizure activity would likely begin. Now, here we were beginning to think about Tyler getting to have his little brother home even if it was only for a brief time. This possibility kicked off a chain reaction of decisions that needed to be made. One of the most daunting was regarding what to do in the case of a medical emergency that could potentially be fatal. We had done everything Jonathan needed up to this point to live, but the question of whether we keep Jonathan alive artificially was not something we spent much time considering given the fact his chance of survival was almost none.
We ultimately decided to put in place something called a “Limited DNR” (Limited Do Not Resuscitate). If Jonathan experienced a life threatening event, we wanted life saving measures to be performed but did not want his life sustained mechanically. Instead of looking at children’s artwork, save the date postcards and baby shower announcements, every time I went to the refrigerator at home, I would see a bright pink, 8 1/2 x 11 reminder of just how fragile Jonathan’s existence was.
Keep in mind that for months leading up to Jonathan’s birth, we were preparing for losing him in utero or shortly after birth. I can still remember walking by what was supposed to be his room. The lifeless builder beige walls and indentations in the carpet from the guest bed we sold to make room for Jonathan’s crib were in stark contrast with the room full of furniture and countless baby gifts strewn about Tyler’s room before he was born. Lauren got to the point where keeping the door closed was just easier than seeing an empty room.
But now, Jonathan was coming…and very soon. After we bought a crib, Jeff and Kay were quick to come over and assemble it. Time to paint the room? No problem. Margaret and Melissa didn't hesitate to offer up their help even before they knew what they were getting themselves into. You see, my wife Lauren isn’t one to do anything half-heartedly. I was thinking maybe a gray/blue with some kind of accent wall. Lauren had bigger plans. How about we use a laser level to paint vertical stripes of varying widths with different shades of brown, beige and green? Sure, just the thing to do in a pinch. I will admit, the final product was pretty awesome!
Back at the NICU, Jonathan continued to recover well and by Friday doctors dropped another little surprise. Not only was he going home, but he was going home the next day. So here we were, just three and a half weeks after he was born, and we had gone from not thinking Jonathan would live, to him scoring a nine on his APGAR, surviving two surgeries and now thriving enough to actually go home to sleep in his own room with his family. It was overwhelming to think of the care Jonathan would require when we got him there. Drops in his eyes every two hours, wound care on his encephalocele three to four times a day (which also required he sleep on a special mattress that kept the back of his head from touching anything), monitoring his activity for signs of shunt malfunction, Lauren having to pump eight times a day, and the extra steps of cleaning the Haberman feeder after every meal. Lauren and I checked the baby monitor pretty often during the night when Tyler was a baby, but that didn’t compare to the amount of times we constantly checked on Jonathan day and night. We took it a step further and made sure that one of us was first to check on Jonathan each morning so Tyler never had to be the one to find Jonathan unresponsive. On top of all of this was the reality that we were taking home a child that looked very different from other babies. There would be questions…sideways glances…whispered commentary…and people I would want to throat punch.
Saturday came, and autopilot took over for yet another trip to the hospital, but this time, it was different. We were going to do something I didn’t think would ever happen. We were taking him home. Home with his family. It was overwhelming to think we would have to take care of Jonathan on our own now with no more help from our nurse angels who got to know and love him. Leaving that comfort of acceptance without judgement was just as daunting. It was time to take Jonathan out into what could be a cruel world. All I asked from our friends and family was to do one thing for us…help us LOVE him…nothing more. Chalk drawn messages led us down our driveway and up to the garage where our family anxiously waited. Just past the message “Welcome home Jonathan, we love you”, stood the biggest, most excited smile of them all. It was Tyler…welcome home little brother.