Posts tagged ‘NICU’
Some dear friends had a baby recently; they struggled to conceive and I can’t think of many people who would be better parents than they will be. Their baby is beautiful and the pictures they send are delightful to see. Yet they awaken in me a longing I didn’t even realize was still there. It’s almost a faint memory now, but I do recall the discussion, more by others than by me, about grieving a “normal” birth process. One not caught up by terror and previously unimaginable pain.
I recognize a longing not only for a normal birth experience, but for a normal experience with one’s baby and child as well. When I look at pictures of our friends’ baby N, I see the difference I didn’t recognize at the time C was an infant. We were already a family with autism, one that made adjustments in daily life revolving around C’s needs and his rather precarious health. Despite the joy in this wonderful little person we had, there were many years of concern, worry and fear while we tried to sort through his seeming myriad of issues, both developmental and health related. Any parents’ lives change when they have children, but there’s something exponentially more challenging about having something you don’t yet understand happening to your child.
I wouldn’t wish our frightful birth experience (and the uncertainty that followed) on anyone, and have often said I don’t really want people to understand because it would mean they have lived through it themselves. I was reminded of how difficult it can be to truly understand another’s experience by a different friend whose lovely baby came along a year or so after C. She called me a few days after coming home from the hospital in desperate, tearful sobs, apologizing profusely for not fully being there for us when C was in the NICU. Her son had spent some time in the NICU, and her fear and uncertainty quickly clarified for her the desperateness of what C’s situation (and therefore ours) had been. I felt terrible that she felt terrible, and while grateful each of us could have some empathy for what the other went through, it made me realize we can never know someone else’s experience lest we walk in their shoes.
When we first brought C home from the NICU, he was on oxygen. We lived at high altitude and had to drive over two even higher mountain passes on our way home from the hospital. We were outfitted with enough oxygen to get through the first few days and then multiple oxygen tanks arrived at our home along with cheerful nurses who checked on him daily.
We weren’t supposed to take C anywhere, said his doc, who advised us to avoid his getting a cold in his first year. (Um, okay.) Surprisingly, we all managed to avoid colds during that year, which is kind of a miracle in and of itself. The only place we could take C was the doctor’s office, for our thrice weekly visits. Determined to get him out in the fresh air, I would put him in the front pack and sit outside on our porch, the furthest point the oxygen tubes would reach. Eventually, they brought us travel tanks, which allowed a little more freedom in terms of walking around the house with him.
I remember my most favorite moment, which occurred about six weeks after arriving home. The visiting nurse had noticed on Friday C’s pulse-oxygen levels were within normal ranges, and we’d had to wait – over what seemed like a terribly long weekend – to confirm with the doctor on Monday that he was, indeed, ready to breathe completely on his own. We disconnected his cannula and we were on our way. We had a cordless baby. We still couldn’t really take him anywhere, but the freedom to just carry him around the house without trailing heavy scuba tanks behind us was joyous.
To this day I still check on him at night to make sure he’s breathing, although far less than I did back then. There’s just something about having a child who can’t breathe on his own that sticks with you somehow; long after the breathing tubes are gone, there’s still that fear buried in the back of your head that you can’t quite let go. Open door, approach bed, put hand on chest to feel the rise and fall, exit room, close door. Breathe.
Shortly after C was born, he was put on a ventilator. Barely two days later, he blew a hole in one lung and had to have a chest tube put in. At that point, the doctors wanted him airlifted from our rural hospital to a facility in Denver for a more equipped intensive care unit. I remember watching the flight nurses wheel him away in a contraption that looked like a space shuttle, off into the blustering snowstorm to the airfield. I’ve never felt so alone in the world.
Numerous sleepless nights, chest x-rays, heart scans, and re-intubations later, we were allowed to take him home with oxygen attached. I remember asking the pulmonologist if he would be okay. A loaded question neither of us understood for what it was. What I was asking was, “Would he be okay?” What the pulmonologist thought I was asking was, “Would his lungs be okay?” His answer, wrong on both counts, “Yes, he will be fine.”
I felt like we were leaving the hospital with a baby under warranty. Truly. So many times in those first years I wondered how this doctor could have been so terribly wrong. I wanted to call him and remind him of us and tell him that no, C was NOT in fact okay, in any sense of the word. In a weird, twisted way, I blamed him for everything, but at the same time, he probably preserved my sanity. If I had known what was coming, I would’ve collapsed on the spot. While he could have never known how much I took his answer to heart, it gave me hope during those really tough years because I still remembered his words. I had put so much faith into the answer to that question, and I think I held onto his answer for dear life.