After Easter, Saimi’s condition clearly began to improve, and it felt like we were finally able to catch our breath for the first time in a long while. However, even though she was on the mend, it was still obvious that recovery would take time and we would be at the hospital for a long time to come. Just before Easter, Saimi was moved into her own room in the intensive care unit (ICU), where a double bed was made for us parents by putting two hospital beds next to each other. The room was divided in two by a screen: on one side was our little space, and on the other was Saimi’s bed, next to which was the nurse’s workstation. In the beginning, a nurse was in the room at all times, and if they took a break, another nurse came in to cover for them. Later on, as Saimi’s condition improved, the nurses were no longer there full-time, as they also had other duties to attend to.
We watched the nurses work at close quarters, and I was often amazed by the efficiency and precision with which they managed their tasks. Work in the ICU was clearly demanding. Based on what I saw, it requires high expertise and, I imagine, a high tolerance for stress. A nurse’s job, especially in the ICU, also carries an immense amount of responsibility, as a child’s life can literally be at stake. And yet, as far as I know, none of this seems to be reflected in their pay, and the nurses are paid about the same basic salary regardless of their duties.
I often found myself observing the change of shifts when the nurse briefly updated the incoming colleague on the main points of care and the day’s events. The new nurse then looked into the details more closely on the computer. In Saimi’s case, that was a long list of events and details! I imagine it is important for nurses to be acutely aware of these details so they can provide quick updates to the doctors when needed. It certainly seemed to me that thanks to the nurses, doctors could make faster decisions; without skilled nurses, it would perhaps be difficult, or at least much slower, for doctors to treat patients properly. And in intensive care, it can often be a matter of minutes, so there is no time to waste.
I have to admit, though, that early on I had my doubts about the staff’s competence. The hospital had just introduced a new software system called Apotti, which I wasn’t aware of at first. I was baffled when nurses kept coming into the room with various devices and immediately started reading the manual. I began to wonder just how incompetent the staff here actually were. Soon enough, though, I realised that the new system had caused all kinds of changes and was giving everyone a headache. On the table in Saimi’s room there was a large folder labelled “Apotti – Survival Guide,” and the ward had so-called “Apotti experts” who had apparently received more training on the system and were called in to help when needed.
One day I was watching as three surgeons stood huddled around the computer in Saimi’s room, staring at the screen. Mikko, one of the surgeons, asked Saimi’s nurse whether they could get some kind of graph of the results on screen. He noticed I was looking at them with some amusement and said, “I realise this probably looks like we have no idea what we’re doing.” Fortunately, the staff quickly learned to use Apotti well enough, but even years later it kept causing baffling problems and, in my view, outright dangerous situations.
The surgeons struck me as a slightly strange bunch. Of the three huddled around the computer, Annika was perhaps the least peculiar. On her, I think I first noticed the old-fashioned clogs, which turned out to be something of a trademark among the surgeons. They look quite uncomfortable, but apparently they are great if you spend a lot of time on your feet. One of the other surgeons often looked as if he had come straight to work from a long night out. Beneath his white coat you could see worn jeans, and his face had several days of stubble. One time he also had a small bruise near the corner of his eye, adding to his scruffy appearance, all amusingly out of place on someone who was clearly an excellent surgeon. Mikko, for his part, was a man of few words and a straightforward surgeon, but observing him also provided occasional amusement. He was bald, and due to the covid restrictions he also had to wear a face mask at all times. On Mikko, the mask seemed to have a life of its own, always slipping and shifting; sometimes bunched up somewhere below his nose, sometimes stretched oddly sideways across his face, and somehow always half hanging off his ears.
After Easter, Saimi’s kidney function began to clearly improve, the swelling faded quickly, and by mid-month she was back to her normal weight of around two kilos. She came off the breathing tube too, and her pain medication was cut down significantly. She was also visibly more content and lively. One time, during the daily care routines, she was so calm that the nurse checked a couple of times to make sure she hadn’t been given too much pain medication.
Saimi loved having people around her, and it was above all the lack of company that made her restless. If no one was nearby, she would start cooing, and if no one came soon to talk to her and touch her, she would eventually start to cry. Once, she was cooing restlessly in her room with her blood pressure up, but when Elli came in, took her hand and talked to her for a moment, Saimi settled and her blood pressure normalised quickly. Other favourite things were sucking eagerly on her pacifier and being fed milk from a bottle. But what she loved most was being held. Now that she was doing relatively well, we could finally take her in our arms, which we all thoroughly enjoyed.
The downside of Saimi’s recovery was that Elli and I were no longer allowed to be with her at the same time and had to take turns again. Saimi’s doctor, Samuli, was pleased that we accepted the restriction without complaint. I noted that it was probably easier to take because this was already the third time we had run into the same rule. At that time, the restrictions on parents were extended to childbirth as well, meaning that partners and other support persons were not allowed into the hospital with mothers in labour. And so, outside the Women’s Hospital there were always lost-looking fathers wandering around, waiting to see their newborn for the first time.
Later I would argue many times with the staff about whether the covid restrictions made any sense, but at this point it was probably good for us that one of us had to go home and rest. Resting at home was somewhat disrupted, though, by an ongoing facade renovation. Our entire building was wrapped in scaffolding, and the workers were banging away outside the windows from morning to evening. Once, when I complained to a nurse that getting any rest at home was a bit difficult because of the renovation, she remarked that the renovation could hardly have come as a surprise. No, I said, but what I hadn’t expected was the pandemic and that our child was in the ICU. And that was the end of that conversation.
Saimi was steadily improving, but new challenges had emerged. The injury to her leg was treated daily but it healed very slowly. The surgical wound on her abdomen hadn’t healed either, and in fact it began to open up on one side, and later the stitches came apart over a longer stretch, although fortunately the base of the wound had closed. At one end of the surgical wound was the stoma spout, that is, the end of the small intestine brought through the abdominal wall. Around the spout, a so-called baseplate was attached to the skin, connected to an ostomy bag where the stool from the intestine was meant to go. Because of the surgical wound and skin problems, the baseplate was difficult to attach and it came loose often, allowing stool to leak onto the skin and into the wound, which, remarkably, kept healing anyway. The more often the baseplate came loose, the harder it was to keep it in place, as the skin reacted to the stool and the constant interference by weeping fluid, among other things.
A great stroke of luck, if not a guardian angel, was Leila, the hospital’s highly experienced wound care nurse, who helped develop techniques to keep the baseplate in place as long as possible. However, the skin was in such poor condition that it started leaking somewhere sooner or later regardless. Part of the problem was also that Saimi’s nurses changed frequently, and while information as such passed between them, practical skills did not. Saimi had three different nurses every day, and new nurses who had no experience of how best to attach the baseplate were constantly coming on shift. The constant change of nurses was also emotionally draining for us, as at its worst, we had to “get to know” a new person several times a day, day after day.
The baseplate problems made it difficult to move Saimi around, but fortunately it didn’t prevent us from holding her. However, we tried to move her as little as possible, so as in Barcelona, we held her in our arms for hours at one go. Around this time, the hospital’s physiotherapist Taru came to meet us for the first time and talk about how to handle Saimi safely and about positional care, which in practice meant shifting her position so she wouldn’t stay in one static pose. I have rarely in my life met someone so visibly warm-hearted and compassionate as Taru. Over the years that followed, we were often in touch with her, and whenever we were in hospital, Taru would come and visit Saimi, bringing things like toys and various aids that made our time on the ward a little easier.
Once again I found myself marvelling at how quickly a person can adapt to even the most extreme circumstances. Even though we were in a constant state of crisis and the worry never let up, after a couple of weeks the ICU had started to feel like a fairly normal environment. Often when Saimi was sleeping I went to the parents’ room to have some time to myself. There was a comfortable armchair in the room, and I sat in it drinking coffee or tea, depending on the time of day, snacking on something and reading a book. While in the ICU I read, among other things, Haruki Murakami’s Kafka on the Shore, whose magical world offered a great escape from the reality of the intensive care unit.
One morning I made my way to the parents’ room in my sweatpants to get some breakfast. A slightly younger man came and sat down across from me with his own food. He looked upset, which was hardly unusual as we were in the neonatal intensive care unit and his family too was in the middle of some kind of crisis. We sat in silence for a while, until I started a conversation by saying something ordinary, as I could see he wanted to talk with someone. He told me he had arrived on the ward with his child the previous evening and that he felt like being in a science fiction film. His child was lying in a room surrounded by machines, lights flashing and alarms beeping. To me that environment already felt familiar, because we had already been in various hospitals for months and also in the ICU for several weeks. Yet, I knew exactly what he meant. I don’t remember our conversation precisely, but one thing he said has stayed with me vividly, something that came straight from the heart: “I’ve just realised that my own work means nothing,” referring to the work of the ICU staff and how vital it was. I don’t know what he did for a living, but I could only say that I understood very well what he meant.
We were able to take part in Saimi’s care more and more each day. We also started doing the more routine care tasks on our own, such as changing her nappy, giving dry washes, and moisturising and creaming her skin. During wound care and other unpleasant procedures, such as inserting cannulas, we were there mainly to comfort her. With attaching the baseplate, however, we became increasingly involved, as we had usually seen what had worked before to keep it in place for at least a while, and we could pass on those tips to the next nurse – if they were willing to listen.
Gradually Saimi’s appetite grew, her milk intake increased and her cheeks filled out. When feeding, she would often smack her lips loudly, sometimes so loudly that she startled herself. When we smacked our lips back at her, she would smile, and so we often started her feeding sessions with a shared lip-smacking moment.
Now that Saimi’s condition was quite stable, Elli and I started doing things together every now and then, such as going home together for dinner, or picking up takeaway food and eating it in the park. Every now and then, when a nurse we knew and trusted was on the night shift, we even dared to go home together to sleep. Most of the time, though, one of us was with Saimi, and as May approached, Elli started spending more nights at the hospital than I did, because I was having trouble sleeping there and at the time I was starting to be mentally quite exhausted. Anyway, those moments together outside the hospital were small breaks from the daily grind and probably important for keeping us going.
Although Saimi’s condition was improving, the doctors and nurses kept reminding us that “you still have a long way to go and you should be prepared for that.” The constant repetition of that bothered me greatly. I tend to overthink things and automatically run through all kinds of possible scenarios in my head. I repeatedly told them that I was well aware of the seriousness of the situation and I didn’t need help to imagine different future scenarios, especially unpleasant ones. Eventually I told them explicitly to stop reminding us about the difficult future, and asked them to make a note of it in Saimi’s patient records. Perhaps the health-care personnel are trained to prepare parents for hard times ahead, but to me it was simply disheartening and wore down our already limited energy. If ever there was a place where people need hope and belief in the future, it is the neonatal intensive care unit.
When I felt happiness from something like Saimi’s little smile, it would have been foolish, and a waste of that beautiful moment, to start ruminating about how difficult things might be in the future. When you have a sick child, you have to be able to enjoy the good moments when they come. It is completely pointless to fear the future that rarely turns out the way you imagine it. When we went to the maternity clinic while Elli was still pregnant with Saimi, the nurse gave us advice that turned out to be almost prophetic: “Remember not to make too detailed plans for your life after the baby is born, because it rarely goes the way you planned.”