I was at the mile 3 marker – 3 months since I had checked into the hospital and yet I already felt like I had run a marathon. After months of what felt like conditioning and preparing to endure an unimaginable physical and emotional race. We had overcome one of the biggest hurdles, or so we thought. Sam’s kidneys had not functioned in- utero and his “outcome” would be determined by whether or not his kidneys began functioning after delivery.
In an infant is born with end stage kidney failure the outcome is seldom positive – the only option is hemodialysis which means inserting a catheter [intravenous] line into the baby. The catheter would serve as a means to do the work of the kidneys by cleansing the blood. Without this, a lethal amount of toxins would build quickly build up in the baby’s body. The problem with doing this kind of dialysis on a newborn is that their veins are typically too small and too weak. In Sam’s case, the risk was even greater because of his fragility. The options were dismal.
On another front, the hospital informed me that they had to make space for incoming patients so I would have to leave the maternity floor where I had been lucky enough (relatively speaking), to stay since Sam’s birth. Sleeping at the hospital allowed me to be as close to Sam as possible. It was now time to face the reality that I would be going home without my baby.
I think one of the things I hated most was seeing all of the new moms being escorted out of the hospital – with their new babies wrapped warmly and safe in their arms; the carts which carried the mother’s belongings full of balloons, flowers and stuffed animals – – all of the signs of happiness and normalcy. Not for us. I wouldn’t want anyone to experience our ordeal, but It was hard not to feel resentful or envious; a healthy child and a happy homecoming, that is all I had anticipated for 9 months (I had hoped for?)
A month since Sam’s birth, he was still clothed only in a diaper. It had been weeks after his birth and none of his beautiful baby clothes could be worn; there were far too many tubes attached to him that might be compromised by restrictive clothing.
The hospital environment became our home away from home. I would get up every day as if I were going to work. Many days, I would sat by Sam’s isolette from 8 every morning until midnight many days. There wasn’t much I could do besides sitting and waiting. Spending so much time with Sam, I became obsessed with watching his “numbers” – I would analyze his oxygen levels and observe how they would dramatically fluctuate. I would study them like a crazy person, looking for any logical explanation to explain what was happening.
My emotional experience was dichotomous; part of me had grown completely numb. I was in complete survival mode. If I had slowed down enough to experience my feelings, the chances of an emotional breakdown were high, and we could not afford for that to happen. I was emotionally numb, yet another part of me was on sensory overload from the flurry of activity that was always prevalent in the NICU. There were bright lights and alarms sounding constantly. There were floods of doctors, nurses, therapists and what felt like hundreds of residents coming and going. There was never any privacy. We were in a fish bowl, right out in the open, observed like some crazy medical experiment. While the staff had good intentions of doing the best they could to make us feel comfortable, it was impossible to ignore the undertone of sickness, fear and in some cases imminent death.
Despite the fact that we had had a few uneventful days, Sam’s oxygen levels began dropping back to a very scary place. The numbers continued to fall. Words cannot what a scary experience that is. Sam’s oxygen level was now only at 50 percent – there were only seconds to intervene or the numbers and I was terrified that the number would drop to the point of no return.
One of the doctors called us over and explained to us that Sam’s lungs simply weren’t working the way they needed to and his kidneys were not functioning at all. He explained if they did not begin working on their own Sam’s urine would continue to build up inside of him to a point of lethal toxicity. The only possibility that was left was to attempt dialysis and even with that the chances of a positive outcome were slim. Sam was much too fragile. Normally, the kidneys and lungs work together to sustain life and neither one of these organs were functioning.
Sam was in a terrible place again. Just when I would start to convince myself that he was going to be okay, the unpredictable chain of events took me to back to the place where I had to face the strong possibility of his death. The respiratory therapists and neonatologists gathered around him and forced us to take a step back. Sam was struggling to survive and there was nothing I could do. Feeling utterly helpless… We needed another miracle.