Saimi was scheduled for an operation in early February, in which they would carry out an endoscopy of her bowel and also replace the Malecot with a new one. The operating theatres, however, were backed up because of several urgent cases, and Saimi had to wait a couple of days for her turn. We had planned to visit grandma in Vantaa once we got out of hospital, and my mother told me that grandpa Kari had already been asking when we would come round with Saimi to see them again.
While we were in hospital, Kari had fallen at home, and my mother hadn’t managed to get him back up, so she’d had to call the paramedics, who ended up taking him to hospital. Kari had told my mother that he didn’t want to leave her, and at the hospital he tried his best in the physical tests they put him through to show that he was in good shape. Apparently, though, those tests took everything out of him, and the doctor announced that he would need two weeks of rehabilitation. Because of the covid restrictions, my mother wasn’t allowed to visit, and the nurses said they were too busy even to bring Kari a phone. Thankfully, after a day the staff found the time to help, and my mother got to speak to Kari on the phone before he passed away the following night.
I heard about it the next day, a little before Saimi’s operation was due to start. I was saddened by Kari’s death, but what shook me most was that my mother hadn’t been able to visit him, and that he had to die alone in the hospital. It felt truly awful.
After the operation, Saimi was taken to high-dependency care, and Elli and I sat in the waiting area, waiting to be let in to see her. I no longer remember exactly why, but we were very worried about how Saimi was doing. There was no one else in the waiting area apart from us, and a nurse passing by noticed us. She came over to say that, because of the covid restrictions, one of us would have to leave. With Kari’s fate on my mind, I told her that Saimi’s mother wanted to be there, and absolutely had to be, and that I had no intention of leaving my child either. The nurse repeated a few times that these were the hospital’s rules, and I replied that she was welcome to call security to try to remove me. “You know I won’t do that, of course,” she said, and thankfully let the matter drop.
From high-dependency care, Saimi was moved to Mountain, and after a week or so we got back home. Our everyday life was still finding its shape, and we tried to work out the best way to organise our daily routine. I was now on parental leave, but Elli too was home a lot, since she could do a large part of her work remotely, which was in any case more or less unavoidable because of covid. As a rule, her workdays ended up short, since alongside work she took part in looking after Saimi when needed.
The intravenous nutrition ran for twelve hours, and we usually started it at eight in the evening. In the mornings Saimi often slept well, waking when we stopped the nutrition and unhooked her from the tubes. If she woke earlier, she liked to listen to children’s songs before we began the morning routine. A typical morning included, besides ending the infusion, the stoma care, a light wash and nappy change, and giving her the morning medicines. At the same time we checked that the dressing on the central venous catheter was intact, and changed it if needed.
After the morning tasks, I would usually head out for a walk with Saimi. Saimi was happy in the pram – at least as long as it was moving – so the morning walks were a pleasant thing for us both. By the time we got home it was already time for lunch, the care tasks, and a nap, since Saimi did not sleep much while on the move. After a hearty milk lunch, we often lay down on the sofa, and Saimi had a habit of falling asleep on my chest, using her chubby cheek as a pillow. Those moments, with Saimi sleeping contentedly against my chest, felt indescribably good.
After waking from her first nap, Saimi was fed again, after which we would do things like listen to audiobooks, play, or do the rehabilitation exercises, which for Saimi were basically fun too. At that time Saimi still slept quite a lot, and in the afternoon she would often take a second nap, after which we might set off on another walk, running errands like the food shopping or picking up Saimi’s medicines from the pharmacy.
Going to the shops became a kind of small new joy of everyday life. It simply felt nice to be able to do ordinary, everyday things. The challenge, though, was that Saimi wouldn’t stand for the pram coming to a stop. I soon learned to jiggle the pram at just the right rhythm even at the checkout, while loading the shopping onto the belt, so that Saimi would stay content. The shop assistants often gave me admiring comments for juggling so many tasks at once.
After the afternoon walk, it was time to eat again. Saimi liked to drink milk, but feeding her milk fortified with purée was trickier and rather slow going. We also tried spoon-feeding every day, though most often with little success. In the early evening I would prepare the next night’s nutrition. As I recall, at first it took me something like 45 minutes to an hour, depending on the number of slip-ups and setbacks. Over time I learned to streamline the process so much that, at my best, I could get it done in under twenty minutes.
Throughout the day we naturally also did plenty of care tasks, such as emptying the ostomy bag, seeing to the Malecot, tending the skin around the stoma, which the leaking left irritated, changing nappies and giving medicines. Now and then the stoma would leak heavily at the base, and then a proper wash was needed. Another bigger job was if the dressing on the central venous catheter failed, and changing it safely took two people. On top of that, we had to be careful with the central venous catheter in general, because if it was pulled on, in the worst case it could come out completely. Fitting a new one would have been a procedure requiring anaesthesia and an operating theatre. Thankfully, Saimi showed no interest in the tube dangling at her chest.
In the evenings we would watch some music programme together, which Saimi also liked to listen to. We would set the nutrition running, Elli would take Saimi in her arms on the gym ball and bounce her, and give her one last bottle of milk as a bedtime snack. Once Saimi had been got off to sleep and moved into her own bed, it was time for our own evening routine and bed.
At the time I suffered badly from sleep problems, which showed up especially in that, if I got up in the night to do something, it was very hard for me to fall asleep again. I also cope poorly with lack of sleep, and if I don’t get enough, my ability to function is challenging, to put it mildly. For that reason Elli usually handled Saimi’s night-time care, as she generally fell back asleep fairly easily. I felt constantly guilty about this night arrangement, but then again it seemed to be the only way for me to be able to function during the day.
Saimi was generally quite content and smiley. However, she couldn’t bear to be alone for even a moment, and under threat of immediate anger there had to be someone beside her keeping her company. Now and then Saimi also felt bad or in pain, which showed as tearfulness, fretfulness or squirming, but often holding her in our arms or rocking her in the bouncer and chatting to her calmed her down fairly quickly. When we were at home, we spent a lot of time sitting with her on our laps and lying side by side.
Saimi’s development was still slow in every respect. She might kick her legs vigorously, wave her arms about and hold on to a spoon, taking it to her mouth as well. She couldn’t, however, do things like sit without support or crawl, and she didn’t reach for nearby toys of her own accord unless they were offered to her.
That said, we did sometimes notice exceptions to this. Once, for example, I was surprised when Saimi grabbed her dummy herself and put it in her mouth. A few times I saw Saimi trying to set off crawling, and she did get a little bit forward, although it was probably more a matter of squirming in a fit of temper. Saimi could also, more or less by accident, move forward or shift position as a result of kicking or wriggling. This meant that, while Saimi slept, it was, on the other hand, important to change her position, but also to keep an eye that she didn’t turn herself into an awkward one, and that things like the nutrition tubes didn’t get trapped anywhere.
Saimi also had problems with using her vision, and it was unclear how well she could see. On the other hand, she actively followed things, especially those happening close by, with her eyes and by turning her head. Perhaps partly as a result of her limited vision, touch and sounds were the most important ways of interacting for Saimi throughout her whole life.
Physically, Saimi developed slowly, at her own pace, and by the end of March she had reached a weight of about six kilos. We often joked that Saimi’s growth seemed to go via her cheeks, since her cheeks appeared to grow first and the rest of her body followed.