The birth of Setriakor: Day 5

Gam arrived early. I was feeding Setri again, and he came straight to Special Care. We wanted to speak to the doctors as early as possible and get underway our plan to discharge Setri against medical advice. We knew now that the doctors would make it as difficult as possible and it would likely take until the afternoon before we could take Setri home.

Gam was worried as to how I was holding up, having been woken every 2 hours to feed Setri. He was not to worry, I told him, I was feeling wonderful. He had stood up for me, he had fought for Setri, and Setri had spent the night getting cuddles and the breast milk he needed every 2 hours. I was still on cloud nine.

Gam was not so well-off, having again barely slept. He was looking fairly haggard. I was glad today was to be our last day. We put word in early that we wanted to speak to the registrar on duty about discharging Setri. We had no plan to wait for any damn meeting, rounds by the doctors or any other nonsense.

After feeding Setri we headed out of Special Care and ran into the young aboriginal couple whose tiny, pom-pom haired daughter was also in Special Care. We exchanged greetings. They were here rather early, Gam mentioned. Yes, the young guy affirmed. They were no longer staying with an Auntie 40 minutes away from the hospital, they were staying in a special room at the hospital. It was really good, he said, their daughter stayed in the room with them and the hospital was just making sure that their daughter continued to put on weight for a couple of days in their care and they would be allowed to go home.

How did they get this room?, Gam asked. The young guy wasn't sure. Someone approached them, he said. If you wanted to stay there otherwise you had to apply. It usually took a couple of days, as far as he was aware. Never mind, said Gam, it sounded good but we were planning on getting out of there sooner than that. We said our goodbyes. Why hadn't anyone told us about this option, we wondered, so we could be together? I was alone. Gam was spending nights home alone on the couch, too upset to sleep in our bedroom. Setri was in Special Care, clearly stressed by the separation, and Gam was driving anywhere from 20-40 minutes each way from the hospital depending on the time of day, and spending $24 a day on parking. More any time he went home to cook and bring me a decent dinner. Setri wasn't sick, he could easily have been in a room with us and checked up on by the hospital staff if they were so damn worried, still convinced his life was in danger. To say we felt a bit miffed would be to greatly understate things.

The friendly, red-haired registrar from the day before stopped by my ward to see us. Before we could tell her that we wanted Setri out of there, she made an announcement. She had a proposal, she said. They were still no closer to a diagnosis and Setri's breathing was still a little high- in the 70s rather than the 40-60 per minute considered normal. They wanted to keep Setri in hospital. We knew that, and didn't care what they wanted. But we let her speak her piece.

Rather than have me stay in the ward, there was a special room right next to Special Care, she told us- that must be the unit we had just learned about!

I would be allowed to stay there for one night, and then Gam could join me the next night. That way, rather than having to walk the long walk from the gynaecology ward to Special Care every 2 hours at night, I would have to walk only a short distance down the corridor. They would call me every 2 hours or when Setri woke for a feed. On the second night, with Gam staying there, the same thing would happen. On the third night Setri could stay in the room with us and staff would check up on him. This might occur on the second night if all went well. The maximum number of nights we could stay in the unit was three. On Monday- one full week after Setri's birth- we would be discharged. Was that acceptable to us?

Gam and I looked at each other. We had finally been given a discharge date. We knew Setri didn't need to be in hospital and we didn't want or intend for him and me to be there until Monday. However, this was a way out without conflict, without looking like we were doing the wrong thing, going against doctors' orders. A way out without looking like the bad parents we had been painted by some of the registrars to be. We agreed without hesitation.

The registrar would sort it out then, she told us. We were to see a certain nurse in charge of admissions to that unit in the afternoon; meanwhile she would arrange my discharge from Maternity this very morning.

As soon as she had left, Gam and I both said what we had been thinking. First, there was no way we would stay for 2 more nights. One night in the unit would provide a path to exit that met the Special Care registrars halfway. We could handle that. Secondly, although we were very happy about this turn of events we both had a couple of questions in mind- why on earth would I have to stay there on my own the first night? Why would we have to be separated for yet another night when the room was equipped for couples? That seemed arbitrary and cruel after everything we had been through. As for us staying together with Setri in the unit for one more night, if they weren't going to be monitoring him overnight, what was the aim of it? It seemed as if they were trying to test us, to see if I was capable of looking after Setri on my own. What was going to stop Gam staying there with me anyway? Surely they weren't going to police visitors for that room like they did for the wards? And why 3 nights? After all, Setri had been in hospital for 4 nights without dying, they still hadn't come up with a diagnosis. What made them think something was likely enough to happen in the next 2 nights that they had to keep him in hospital?

“You should just stay with me in the unit tonight regardless”, I told Gam. We messaged Mum and Dad to let them know we wouldn't be coming home today after all and to visit us at the hospital.

I was eating homemade porridge that Gam brought in for me when the discharge nurse arrived to see me. She saw I was eating and said she would come back shortly. Mum and Dad arrived in good spirits. We told them what was happening and that we would only be there for one more night. Both Gam and I hid our feelings of trepidation at saying out loud that we would be there only one more night. We had said it so many times since Setri was born, and each time events had conspired to keep us there.

Something I withheld even from Gam was that I was starting to feel institutionalised. I had not left the building even once since I arrived 5 days ago. It was bad enough to leave Setri and go to another part of the building to eat, sleep or go to the toilet. It hadn't occurred to me to step outside, not without Setri. I was becoming afraid of going home. It was a stupid fear, I knew it, and I worried it would upset Gam. But I still didn't really know how to look after a baby. 4 days had passed in which I was not allowed by the hospital to learn how to care for my baby. Setri was 4 days old and I still didn't really even know how to change a nappy. Here, the cleaning was done every day. The food was shit, but it arrived at the same time every day. If my sheets needed changing they would be changed. It was nonsense, of course. I wasn't happy, and I wasn't comfortable. I was horribly sleep-deprived. Anything I needed at home, Gam would provide. But we weren't a smooth-running machine like the hospital. As clinical, unreasonable, inhuman as the treatment of Setri and I had been, it was predictable, familiar. Somehow I was becoming afraid to leave. It was an odd feeling.

The discharge nurse came back as I finished my porridge. After making sure I didn't mind her conducting the requisite health checks in their presence, I lay on the bed while she palpated my mushy-feeling abdomen to check that my uterus was shrinking properly, and asked about bleeding and pain. Everything checked out, I signed my discharge forms and we carried our bags down to the Special Care Nursery level. It was still too early to check in there, so after leaving them outside the unit we all went again to visit Setri, familiar now with the pathetic rigmarole of having to take turns for one of us stand outside the nursery in the hallway because even a baby's own mother and father counted as visitors. It still grated on me that this was just one more thing we never would have had to do if the hospital had done the right thing and allowed us to take Setri home. I was seething with resentment, yet still anxious that they would find a way to prevent us from taking him home.

One thing that still worried us was that Setri had lost so much weight. Of course this was due to the fact that the registrar had arbitrarily placed him on nil-by-mouth for over 36 hours before we had the guts to feed him against their orders, but they weren't about to take that into account. A Special Care nurse informed us that if he lost more than 10% of his body weight it was policy to keep him in hospital. Even though it was the fault of the doctors that he'd lost so much weight in the first place, Gam and I said to each other. The nurse reassured us that she had weighed him and he had 'only' lost about 8% of his body weight. It would start to pick up now that he was feeding again, she said kindly. He now weighed under 5kg, 440g down from his birth weight.

Setri was still feeding with great vigour; those damn wires attached to him notwithstanding. The cannula in his hand had caused him great irritation from the start, but it was my mum, a former nurse, who first noticed that something had gone wrong.

“His hand looks a bit swollen”, she said. It did. He also seemed uncomfortable when it was touched. “I think the cannula's come out”, Mum said, “See that redness further up his arm?”. We flagged down the nurse, who removed the dressing that held the cannula in place. It was horrible- Setri's arm and hand were swollen and bright red, obviously sore and sensitive, judging by Setri's reaction to having it handled. It wasn't an infection, but the cannula site had blocked up and the glucose drip that they had not taken out in spite of the fact that Setri was now breastfeeding again had been feeding into his arm rather than a vein. “That's pretty red,” said Mum. “Looks like it's been like that for a while.”

The nurse bustled about, removing the cannula and dressing from Setri's arm. From what she told us, it wasn't a surprise that this had occurred. The cannula site was getting old. They had flushed it early that morning, the doctors wanting to keep the site open (god knows why- this made us mad. What else did those people have in store for him?) but not wanting to recannulate him at a new site for the obvious reason that he was now no longer nil-by-mouth and didn't really need it. “We want this out, we do not want him recannulated,” Gam said, noting that it had been done the first time around without our permission. Chances were he didn't need to say it- they probably would not have recannulated Setri, but who could blame him for feeling the need to iterate it so strongly, after everything that had happened?

“One more thing that wouldn't have happened but for the Special Care Nursery”, I said bitterly, upset all over again as I looked at Setri's little arm, swollen and red. “This is an actual injury”, said Gam. It looked painful. We were angry. None of this should have happened. None of it. We shouldn't have been there. We were effectively forced into this situation and now our baby was in pain once again as a result of unnecessary medical intervention. On its own it might have seemed minor, but to us it was just the latest in a long string of insults. At least he had his preferred sucking hand back- the dressing and the cannula had prevented him from self-soothing in his preferred manner, part of the reason it had appeared to annoy him so much in the first place.

“Don't worry, we'll get you out of this place soon”, Gam said to Setri.

It was around this time that one of the nurses enquired about Setri's bowel movements during the short time he had spent outside the Special Care Nursery. “Normal”, I told her. He had pooed meconium on his second night in hospital while in the maternity ward with me, and had pooed at least once prior to that on his first day in Special Care. Why? Setri hadn't passed a bowel movement since being put nil-by-mouth when he was less than 2 days old, she told us. That was normal, given his treatment, but it was something they had to monitor. If he didn't poo soon it could indicate trouble. If he didn't poo, would it mean they would keep him in hospital?, we asked. It could, she said. “Great”, said Gam. “One more thing to worry about.” One more potential health problem that was the fault of the hospital. The registrar had placed Setri nil-by-mouth when he was only 1 day old, and it was 36 hours before we told them to go to hell and fed him anyway. That meant he missed most of the colostrum I produced- colostrum designed to clear out his gastrointestinal tract. One more reason to be angry.

It was not long after lunch time when we moved our stuff into the special parents' unit. It was set up like a cheap motel room and had a double bed. No reassuringly sterile hospital linens here, though- the bedclothes looked worn and had seen better days. The room was clean enough, but still a bit scungy. Quite a lot scungy compared with the hospital environment I'd become used to, really. There was a folding change-table for parents whose babies were allowed to stay with them. It looked dangerously flimsy.

Even worse was the bathroom. It was a shared bathroom, with a door on either side leading from both the parents' units, and a special locking system explained to us by the admitting nurse. Sharing wasn't the problem. I'd been sharing a bathroom with at least one person right from the very beginning. The bathroom was dirty. As in it hadn't had more than a perfunctory cleaning in a long time. The toilet-roll holder had been pulled away from the wall and the roll dangled ready to fall on the floor. There were handrails right next to the toilet, which I had found essential for support up to that point, but their less-than-clean appearance meant I just took extra care getting up and down rather than touch them. I did my best to wash my hands extra thoroughly. The unsavoury state of the unit did have one positive, if unintended, effect: I suddenly lost all apprehension about going back home! No matter how incapable Gam and I were of keeping on top of the housework, it would take a long time for our bathroom to get that dirty!

Meals were still delivered, but only for me. We weren't sure if Gam was officially staying in the unit or not. He had been there when we checked in, and no-one mentioned that it was only supposed to be me staying there. Not that it mattered, as the meals were just as inedible. The only difference was that I was offered a 'menu' and could elect to receive full-fat milk in the mornings rather than the skim milk that had been provided while I was staying in Maternity.

For the first time in 5 nights, Gam and I spent the night together. It was the first time in many months that I had been able to spoon him in bed, now that my massive, uncomfortable pregnant stomach had disappeared. It felt blissful to hold him.

Not so blissful was being woken every 2 hours on the dot by a phonecall from Special Care, hauling on a few more items of clothing and trotting down the hallway to feed Setri. 5 days in and we were both severely sleep-deprived to the point where it felt literally painful to drag ourselves from slumber. Gam almost succumbed to the temptation of staying in bed at one point, but doggedly roused himself and followed me to the nursery before falling asleep in his chair as I fed Setri. It was ridiculous, we grumbled on the way back to our room. At home we'd have Setri in our room, in the co-sleeper cot attached to our bed. We were being sleep-deprived for nothing other than the satisfaction of the hospital. No way were we going to do this for another night, even if Setri was allowed to stay in the parents' unit with us. Having Gam with me, us being a team again through the night as well as the day, a family tucked into the corner of the Special Care Nursery, Setri falling asleep in Gam's arms as he held him after a feed, it felt almost right. But we were still in the hospital, and we ached with tiredness and the desire to go home.