A Boy Named Silas: The First Five Years Page 3

  During that time, I found myself wondering, Could I love this child if he smelled this way for the rest of his life? And I have to admit I struggled quite a bit with how to answer honestly.

  I wish I could say that my maternal affection towards Silas was eeking out of me (in a good way) from day one, that we bonded together right away in spite of all his medical concerns and his sterile environment.

  But having Silas made me realize I am not the ideal mother. Bonding with Silas took time. And so following his surgery, I sat and held him, stink and all, and hoped to God that my son wouldn’t always reek so bad.

  Do I feel guilty for having such thoughts? Sure do. In fact, seeing the words in print (and knowing Silas will probably read them one day) makes me wonder if it wouldn’t be best to just skip over this part of the story. I’m far from perfect, no matter how hard I try.

  Thankfully, God truly is the perfect Father. He loves us, faults and sinful stenches and all. He didn’t wait to love us until we were Zestfully clean and smelling like Johnson and Johnson’s. He saw (and smelled) us in our sinful state and then sent His Son to redeem and purify us.

  Now that’s amazing grace.

  Take Two Tylenol

  Imagine if an adult underwent major abdominal surgery and afterward was only allowed two Tylenol pills every six hours to manage the pain. That’s what some jerk tried to do to my son, and I just about let him.

  The afternoon of his surgery, Silas stopped breathing on two different occasions. The first instance I only heard about; the second I got to witness first-hand.

  When I came into the NICU, Silas’ monitors were beeping, and the nurse was alternately rubbing Silas’ foot and shaking his shoulder. As I got closer, I heard her saying, “Wake up, baby,” in a calm, soothing voice.

  When I got to Silas’ crib, I wondered why she wasn’t screaming hysterically for help.

  Silas was ashen grey. He was so oxygendepleted that he was past the blue phase. His monitor showed that his blood was only 60 percent oxygenated. (A NICU nurses typically spends a huge chunk of her day scurrying around like crazy in order to keep her babies’ saturation numbers above 92 percent.)

  “Is he ok?” I asked, trying to borrow some of our nurse’s calm.

  “I think he’ll be just fine,” she said. And within a minute, Silas was back to his normal color and vital stats.

  It turns out that Silas’ so-called apneic events were the result of his surgical anesthesia, but at that time the doctors also suspected the morphine. The result? Twelve hours after surgery Silas was taken off morphine and given a single dose of Tylenol every six hours.

  When I went to visit Silas the following morning, he was in obvious pain. He still didn’t cry regularly, but he writhed and wrinkled up his face in a constant scowl. It also happened to be our luck this day that Silas was assigned the very worst nurse we encountered during our entire NICU stay.

  I wasn’t naturally assertive at this point in my mothering. I probably said something real confrontational like, “I think he’s hurting.”

  Our nurse shrugged and said, “It’s not time for his Tylenol yet. Still three more hours to go.”

  I came back to Scott and told him what happened. “Why didn’t you demand to talk to the doctor?” my husband asked me. (Well, because that would have been awkward.) In went Scott to the NICU, and a few minutes later he came back to report that our son had physician orders for round-the-clock morphine.

  What did I learn from this experience? That protecting my son is a higher priority than keeping peace. That I need to be willing to go to higher-ups if my son isn’t getting the care he needs. And that, like it or not, there are still a lot of old-school types out there who will listen better to Dad than they ever will to Mom.

  I am very happy to report that I have grown to be a much better advocate for my children than I was in Silas’ NICU days. I even flat-out refused a test ordered by a curmudgeonly surgeon who would definitely fall into that “old-school” category.

  But that’s a story for another day...

  The Call

  From my young childhood on, my passion was to be a missionary. It’s written in my first grade journal. It was confirmed when I was twelve years old and received what most Christians would term ‘‘the call.” It was strengthened when I went on a short-term mission trip as a college student. Only a few months after returning to the States I met my husband-to-be, a missionary candidate with a heart for cross-cultural evangelism. Fourteen months later Scott proposed to me at the Urbana Missions Conference. Six months later we were married. A year after that we were accepted as church-planters to Siberia.

  We were on our way to the nations.

  Our route to missions wasn’t very straight forward, however. A two-year detour in a youth pastorate in rural Washington was followed by a year and a half stint at Alaska Bible College. During this time, Scott and I were actively involved in raising support for the mission field, so when Silas was born we had reached nearly half of our funding goal.

  Unfortunately our dream to become missionaries, which we had both been pursuing since before we even met, sounded more and more unattainable with each week Silas spent in the NICU. Silas’ G-tube surgery was successful, but he still was unable to swallow anything, even his own saliva. He choked constantly and required round-the-clock suctioning in his throat to keep his airway clear. After a month in the NICU, Scott and I had to admit that, short of a full and miraculous healing for Silas, we would never be able to take him on the mission field.

  Turns out we were right. Realistically speaking, our family is no longer fit for crosscultural missions. Silas requires very expensive medical equipment, including 150 cans of formula a month that he simply can’t live without. His lungs are still susceptible to disease, and he could require hospitalization at any point. If we were to enter the mission field in spite of Silas’ medical setbacks, we would also be taking our son away from his three or four therapy sessions a week.

  I have to say I don’t get God’s economics. When there is a shortage of cross-cultural workers, when there are so many unreached people groups in the world, and when Scott and I were so willing to be sent out as missionaries, why did God allow Silas’ complications to get in the way?

  I have no idea.

  It’s a question I wrestle with regularly. Perhaps in the future God has plans for our family that include foreign mission work. But until then, He has charged me with a very different call. I am Silas’ mommy. I take care of his tube feedings, I take him to his therapy appointments, I work on his exercises designed to help him achieve his full potential.

  It’s not foreign missions, but I hope that at the end of my life, even if l never set foot in another country as a missionary, I will nevertheless hear my Savior’s affirmation:

  Well done.

  Until then, may I be faithful in raising the endearing, engaging, and uproariously funny little tube-fed boy that God has entrusted to my care.

  Whose Baby, Anyway?

  We were blessed to be able to spend so much time with Silas in the NICU. Between the two of us, Scott and I probably put in ten to fourteen hours by his bedside each day. A lot of that time was spent holding him. I would actually strip myself down, put on a hospital gown, and place a naked Silas on my chest for direct skin-to-skin contact. I already knew intuitively that physical touch has healing ability, but the NICU had the research to prove it. They encouraged this kind of cuddling (kangaroo care, it’s called) from the very beginning, and I tried to get in as much of it as I could.

  Before visiting Silas in the NICU, we had to scrub up to our elbows for two minutes. They even had little timers by the sink to make sure we weren’t shirking our sanitizing duties. I wasn’t allowed to wear my wedding ring and so I put it on a chain and wore it around my neck for the entire six weeks Silas was hospitalized.

  Right by the scrubbing sink was a brightly colored poster with the patients’ “Bill of Rights.” One of the top bullet points on the poster
said, clear as day, “You have the right to deny medical care.” That line certainly became a great temptation to me the stronger my son got. As Silas’ mother, I had the right to deny medical care on his behalf? Well then, couldn’t I walk into the NICU, say something like, “I think he’s well enough now,” and take him home?

  Weeks had passed since Silas’ surgery. We had been trained in how to suction out Silas’ throat, how to give him his tube feedings, how to change the tape around his tube site to keep the area clean. We knew that our son had significant swallowing dysfunction and brain damage issues. The miraculous healing we prayed for hadn’t come, so now all I wanted was to take him back home with us to Glennallen.

  Like, yesterday.

  And so, once it looked like Silas was as well as he would ever be, I looked at that patients’ Bill of Rights and wondered, Could I just deny medical care for my son and take him home today? Now, I have to tell you, this went entirely against my doctor-knows-best, don’t-rock-theboat kind of thinking. But I wanted my son home with me in the worse way possible.

  Outwardly, I managed all right. I was loving towards my family, I was pleasant with the NICU staff, I was maintaining my devotional life. But I felt so trapped. I didn’t know how long I could last like that without eventually losing my mind.

  And so, one day I brought the subject up with Silas’ nurse in a very safe, hypothetical manner. “What would happen,” I asked, “if a mom just denied all medical care and demanded to take her child home?’’

  “Well,” the nurse replied, just as casually, “we do see that happen sometimes, and then we’re forced to call in OCS” (the Office of Child Services, Alaska’s equivalent to CPC). And believe me, that was the last time I mentioned it.

  I have to admit that I battle with some real ugly control tendencies when it comes to raising my children. From our NICU days on, however, there were so many things about Silas and his care I simply couldn’t alter. His discharge date was out of my hands, and if I pushed the issue, I risked losing him to the foster system. No thank you.

  Like I said, I could stand to shed some of my control-freak habits. At the time of my conversation with the nurse, however, I didn’t care much about the sanctification process God was bringing me through. I just wanted to get my son out of that wretched NICU before I completely lost it.

  Thankfully, Silas’ discharge day was just around the corner, and not a moment too soon.

  D-Day

  Silas was discharged from the hospital after a total of 41 days in the NICU. If my memory and my math abilities serve me correctly, that means I went 39 days without crying. I’m sure there’s a psychological term for it — shock might work — but after Silas’ first 24 hours I didn’t have the emotional energy it takes for a good sob. I was in survival mode. My objective was to keep my family intact as much as possible until Silas was home.

  Period.

  It was the Thursday before Thanksgiving when I walked into the NICU and saw a handwritten list by Silas’ crib. It was his discharge plan. Once all the bullet points were taken care of, we could take Silas home.

  The countdown clock was ticking. A lot of things, like getting set up with community therapists and putting in our order with the home medical supply company, had to be done on weekdays. Friday came and went without everything accomplished, but we were told that unless something drastic happened, we’d be walking out of the NICU on Monday with our almost six-week old baby.

  Let me tell you, that was one long weekend. I tried to reason with myself: In one year, will it make a difference if Silas spent 39 days or 41 days in the hospital? Now with hindsight, I can tell you definitively ... YES! From my vantage point more than five years later, I wouldn’t have wanted to stay one hour longer in that NICU than we did.

  The highlight of those last few days was being able to room in with Silas. For his last two nights, Silas got to sleep with me in a private dorm that much more resembled a hotel than a hospital. The idea was for me to practice caring for Silas while still having nursing staff available if I needed them. The biggest blessing was bringing Nemo in without worrying about him destroying the NICU. (Until then, since the NICU was full of cords that looked so fun for a one-year-old to pull, we would carry Nemo to Silas’ bedside and let him blow his brother a kiss, and then we’d take him back out again.)

  True to form, the very first thing Nemo wanted to do when he saw Silas was to hold him. I was more than happy to oblige. Until that point I had worried about Nemo’s ability to bond with his brother. Would he hold a grudge against Silas for taking up so much of Mommy’s time and for disrupting our family life so drastically? As Nemo showered his baby brother with kisses, I realized my concerns were unnecessary.

  In addition to rooming in with Silas to prove that we could take care of him, both Scott and I had to attend a baby CPR class. I resented the time it took away from both of my sons, but it was a mandatory part of Silas’ discharge plan and I wasn’t about to argue with that.

  If you’ve ever taken a Red Cross CPR class, you might remember their pathetically melodramatic skits. In the one we watched, a woman is babysitting her newborn grandbaby, walks into the nursery, and finds him blue and unresponsive. Most of the parents in the class poked fun at the exaggerated acting and the canned nature of the film while I sat trembling in my chair.

  When I got back to the privacy of our own room, I burst into tears. For several minutes, all I could tell my shocked husband was, “I didn’t like it.” That video made me relive Silas’ first hours of life, something I hadn’t yet done, and wouldn’t do again for at least another two years.

  In spite of that little hiccup, we all made it through the day. On Sunday, Silas had an “outing” down the hall to get circumcised. And sometime late Monday morning we finally got the last delivery of Silas’ medical supplies. A doctor signed a piece of paper and we headed out the door, taking our son out into the big, bright — and now very wintery — Alaskan world.

  Shout-Out

  No discussion about Silas’ NICU days would be complete without mentioning the wonderful support we received from those around us.

  I won’t soon forget our delivery nurse who was the first person to pray with me after Silas’ birth, nor the doctors and hospital workers who cared enough about my son and my family to cry with me that first hour.

  The hospitality staff at the mission home bent over backwards for us the first day. Jane (a missionary who happens to also be a nurse) spent several hours with me in the delivery room offering a peaceful and grounding presence. When I was finally discharged from the Palmer hospital, she and her husband made three or four trips between Anchorage and the valley to deliver vehicles, passengers, suitcases, and cell phone cords so that we would be as comfortable as possible as we got our family set up in the Providence Guest House.

  Scott’s friend, Bill, from Alaska Bible College was a pastor living an eight-hour drive away when he got the call about Silas. Before he was even off the phone, Bill’s wife had booked him a flight to Anchorage. Bill arrived at Providence just minutes after Nemo and I did, and then he spent several days pushing me in a wheelchair, watching Nemo so Scott and I could be in the NICU together, and picking up things from the local Walmart so we didn’t have to worry about errands. When a bigger room became available for our family in the Providence Guest House, Bill spent an afternoon moving all of our stuff by himself to give us a little more space.

  We were away from our home in Glennallen for a total of seven weeks. We hadn’t locked up the morning we left, but instead of robbers sneaking in and looting our home, several women from the Bible college came in and cleaned out the fridge and tidied up for our return. We also had many friends from Glennallen visit us in Anchorage. A girlfriend of mine dug through our drawers and closets at home to bring us the clothes we would need as winter approached.

  Our church in Glennallen sent us a big manila envelope with dozens of cards and notes of encouragement. Needless to say, we felt deeply blessed to know t
hat our friends back in Glennallen were praying for us.

  The Providence NICU is a level one facility. The whole time Silas was there I felt he was receiving as good of care as any we could find in the country. In addition to their skillful attention, the nurses helped maintain my sanity by giving me companionship and conversation during a very difficult time in my life.

  Last of all, I need to mention how thankful I am for my husband, who suspended all his studies at Alaska Bible College to be present for Silas, Nemo, and me. Not every NICU mom got to spend so much time with her child and be so involved in his or her daily care. I was able to be with Silas because Scott gave up his work and his studies to help take care of Nemo. When we switched places and Scott went back to the NICU, I didn’t feel so guilty spending time with Nemo because I knew Silas was with his daddy.

  When Scott and I got married, we had no idea what trials lay ahead of us. Although the next six months of Silas’ life would cause significant strain in our relationship, that time in the NICU was characterized by closeness, support, and unity. I would have never chosen to go through those 41 days at the hospital, but I am eternally grateful for the man God placed in my life — as well as the many friends who lent their encouragement and practical support — so I didn’t have to walk through that dark and scary valley alone.

  Settling In?

  Silas was home with us for three short weeks before he caught his first cold. Chances are Nemo brought it home from the church nursery. Silas’ pediatrician actually advised us against taking our son to church after he got out of the NICU. We quickly decided the doctor was full of it and found ourselves a new pediatrician (one who didn’t swear in front of our children or deliberately make our baby cry so she could listen to his lungs ... but I digress).