“It’s a rollercoaster…” A statement that is regularly used by staff and parents alike in the NICU. After 5 months in hospital a rollercoaster is a fair representation of our experience. But what does this statement that can be heard up and down the NICU corridor actually mean? Describing it as a rollercoaster accounts for the sudden changes of direction, the stomach churning drops before moments of apparent highs. Here I’m going to attempt to liken our experience to the theme park attraction.
There were highs. Walking through the corridor I received both high fives and commiserating hugs from staff aware of Alec’s progress. The highs were times when he was extubated and managed to keep off the ventilator for a period of time, when he reached personal milestone moments. These highs though came with a caution. They felt muted. The dips and twists of being on a rollercoaster ruined us from fully enjoying highs. The tone of the experienced staff on the NICU reinforced this. A tentative triumph knowing that the next battle for our little boy was an equally significant one and things could quickly change… but a high nonetheless. There were also lows but we’ve talked about lots of those already.
The sheer pace of the NICU didn’t allow you time to process. Alec’s birth was one of the most traumatic experiences of our lives but the days that followed didn’t allow us any time to think that through. Often the pace meant that the focus was constantly changing from one essential organ to another (had a hole in the heart, that couldn’t be dealt with because of his lungs, that couldn’t be treated because of a suspected infection… three weeks later we returned to the heart). One day we must try to make space to come back to these moments, only now we are at home I can’t bring myself to think about or read the diary of those days. There was a change of pace. Suddenly the attention changed from being urgent to longer term issues. Eye and hearing tests replaced heart and brain scans and lung X-rays. All followed by an equally challenging season of, “He just needs to grow”.
Not in control
We weren’t the ones in control. Our boy was very much in the hands of the incredible doctors and nurses. Nodding his head towards the sellotaped handwritten Psalm 23:6a stuck to Alec’s incubator (“Surely goodness and mercy will follow him all the days of his life.”), Dr William reminded us: “He’s in good hands here, but he is very much in God’s hands.” These words helped me, as even though, in those very early fragile moments, I was well aware that I was not in control, I didn’t consider this rollercoaster a driverless vehicle. At the same time I felt a sense of sobering responsibility. On our first night we were told to be prepared to ask ourselves two questions. These questions were stuck in my mind for the months that followed:
- Are we prolonging his suffering?
- Has he stopped trying?
At points we had to consider our wonderful boy’s life through the lens of these two questions. As horrific as they were to answer, I felt a sense of huge responsibility to make these decisions for the sake of my son.
You can’t get off
Catapulted into this ride with no warning, we were stuck, strapped in and now part of this new world of being tossed and turned around the NICU rollercoaster. As the rollercoaster continued to go around and around… the rest of life continued to happen. Would life ever return to any kind of normality? As I think about those months I think we were so far away from normal life. Like many other parents of premature babies, we had significant other life moments that we’d sought to deal with before the baby arrived, i.e. moving house. Instead these arrived at the same time. However, having head space for anything else was almost impossible. Other factors like being with Evan, living altogether as family (at points we were living in three separate places), spending time with friends and many other things that are considered ‘normal life’ were only viewed in fleeting moments as the rollercoaster continued to travel.
These are just some of the ways in which life on the NICU can be compared to a rollercoaster. I never really liked rollercoasters anyway.