At 6am I awoke and showered, then expressed again, sitting my specimen jar on my breakfast tray. I filled that jar with colostrum and went to the ward reception for some labels before returning and starting on a second jar.
Gam arrived and I showered. My milk was coming in- my boobs were visibly larger than they had been the night before. And sore. To my relief, my belly had also shrunk some more; the day after the birth I looked like a woman who was 6 months pregnant. Now I looked... maybe 3 or 4 months pregnant. After my shower the new midwife on duty stopped by, asking about my bleeding, whether I needed any pain relief, and whether I'd managed to 'move my bowels' since the birth.
I hadn't, I told her. Was there something I could take that would help? She offered Metamucil, a laxative tablet or Microlax. Microlax sounded the most appropriate- my fibre intake was fine and I didn't anticipate any problems once I had successfully been to the toilet for the first time. When the midwife returned she handed me the little bottle of Microlax and instructed me on how to use it: lubricate nozzle with the little sachet of lube, insert nozzle up bottom, squeeze bottle, then wait in proximity to bathroom because the urge to poo will hit suddenly!
In the bathroom, having followed the instructions I discovered that the Microlax seemed to act basically as an irritant, and had the urge to expel it straight away- it burned! I tried to hold on until it seemed to be working properly, then I had an urge to push, disconcertingly like those I experienced during labour. Soon I had my relief, with no ill-effects for my poor bruised pelvic floor. The experience pretty much confirmed that my inability to 'go' had been psychological and when the midwife came around again I told her as much. “That's pretty common!”, she laughed.
That midwife took an interest in us and took time to talk to us- and listen to our story so far. Aspects of it clearly concerned her, though we had not told her anything beyond the first doctor's inappropriate inquiry about vaccinations, omitting the patient-confusion episode and the second doctor's implied threat to remove Setri from our custody. Mostly because I found hard enough to get the rest out without my voice breaking without having to address the most traumatic aspects of what happened the night before.
Gam and I went again to Special Care. We were the parents of 'the big baby'. It was now over 24 hours since either of us had been allowed to hold Setri. One of the nurses was just finishing her shift. “He was just distraught last night”, she told us. “He just wouldn't settle, so I got him out for a little cuddle”. No surprises, Setri had settled really well after that. “Thank you”, I said to the nurse. I felt sick. I was torn between a feeling of extreme gratitude that Setri had had some human contact, which he so clearly needed, and a sheer seething hatred of everyone in the nursery who had conspire to stop me from holding him in my arms. That wasn't the nurses fault, I thought. But why hadn't they called me if he needed a cuddle? I hadn't been allowed to hold him for more than 24 hours. Why hadn't the nurse called me to settle Setri? My heart broke, but I settled on being thankful that at least Setri had had a cuddle from someone. That, more than anything, was what he needed. Not the drip, not the wires, not the isolette.
It seemed as if the nursery now had some inkling of how disgruntled we were- maybe word was starting to get around- as they had arranged for some middle-aged head nurse to speak to us about how important it was that Setri continue to be nil-by-mouth. Unlike the other nurses actually working in the nursery, she seemed to be a direct mouthpiece for the doctors. They wanted to put in a nasogastric tube to feed him.
They wanted to what?
No way, Gam and I said. Setri should be allowed to breastfeed. He had been breastfeeding fine before being admitted to Special Care. If they were going to assert that he couldn't tolerate a feed, then they should conduct a trial feed to see if that was actually true. Let us feed him here, we argued, while he's hooked up to the monitor, and see for yourselves whether his oxygen saturation drops while he's feeding.
No, the nurse said. “We don't know how he'll tolerate a feed”. He could tolerate a feed, we again replied, wondering how many times we had to say that he was feeding fine before they took him. He had been feeding well, he had been making a normal number of wet nappies and he had pooed.
“Yes, but we don't know how much he'll be getting,” she said. That was easy, we replied. There are numerous ways to determine that, from weighing an infant before and after a feed, to feeding them the expressed milk in a bottle and measuring the volume taken.
“We don't know how he'll tolerate a feed”, the nurse said again. Was I imagining things, or didn't we just go over this?, I wondered. Gam and I repeated what we had said earlier- that Setri had been feeding just fine until someone decided that he wasn't allowed to. Again she ignored this fact, repeating that if he were allowed to breastfeed there was no way to determine how much milk he was getting. Trying to fob us off with a completely circular argument.
Then Gam asked about getting Setri out of the isolette and into a crib so we could have more contact with him. No, the nurse said, he couldn't cope with the crib, it was important that he remain in the isolette. I blinked incredulously, barely holding it together. What I had dismissed as paranoia was coming true: I had been offered the choice of crib or isolette and chosen the isolette because it was logistically easier for the nursery; now it was being used as 'evidence' that Setri was sick. Gam told the nurse we wanted to speak to the registrar. We would have to wait, we were told. After the head nurse left, one of the junior nurses tried to reassure us: nurse such-and-such was actually very pro-breastfeeding, it was just that she was worried for Setri's safety.
Gam and I conferred in hushed tones. I had been offered the choice of isolette or crib when Setri was admitted to the nursery, I reiterated to Gam. I had told him this the day before, when recounting the story of Setri's admission. Gam hadn't dismissed it as paranoia, telling me that we'd been through enough crap to justify the thought that someone might try and pull a trick like that. He was right.
Morning was the busiest period in the nursery and the place was getting full; opposite us were the family of a woman who'd given birth to twins, a boy and a girl. The little girl had just been placed in the isolette across from Setri's. The boy had died during the birth, prompting a poorly-handled exchange between the distraught sister of the mother, who had been present at the emergency caesarean birth, and the middle-aged matron- the smoker- who Gam and I had taken a dislike to. The aunt had come by Special Care to find out where her nephew's body was being kept - “looking for my nephew”, she said- and the nurse hadn't paid enough attention to realise that the naked little girl in the isolette in front of her was not a baby boy. The aunt angrily blurted out what had happened, and cursed the nurse for her mistake. The nurse was brusque and insensitive, verging on rude, in her reply. Sure, she couldn't have known that the newly admitted little girl had a dead twin, but someone with her experience should have known how to defuse the situation arising from her mistake. An apology would have been a good start. There was considerable irony in that Gam and I had just heard her talking to another nurse about being sent to a seminar designed to improve 'customer service' at the hospital. Next to them was the family of one of the tiny premie babies: the mother, who came in every day, twice a day to use the electric breast pump and have skin-to-skin contact with her little girl, and her parents; the grandparents who took turns proudly holding the baby, who was smaller than most dolls. Even the nurses marvelled at her size every time they retrieved her from the isolette for the mother. We weren't going to kick up a fuss and potentially distress other visitors even if we felt like it. But we were going to stand up for Setri, and stand up for ourselves. At least, that's what we told ourselves we would do.
No way were we going to consent to a nasogastric tube, Gam and I agreed. We were positively agog that it had come to this: a healthy baby with a history of uncomplicated breastfeeding had first been deprived of the breast and placed on a glucose drip; now they were about to start tube-feeding him on the premise that he couldn't possibly tolerate a breastfeed. It was impossible to believe that the people we were dealing with were medical professionals. Putting a nasogastric tube in Setri wasn't best practice, it wasn't a decision based on the best available evidence- there was not only no evidence to support it, the only available evidence was that Setri was perfectly capable of breastfeeding and tolerating oral feeds. The proposition was ridiculous. No way would we agree. No bloody way, we said to each other.
We were met by the registrar, to whom we expressed our unwillingness to agree to their wish to intubate Setri. We told her it was a bad decision, we told her that Setri was perfectly capable of feeding, that we wanted them to allow us to give him a trial feed while a doctor observed the monitor. Not possible, she said. She would get a more senior registrar to speak to us.
I had wanted to draw the Special Care doctors' attention to the fact that they as a team had left me completely without support to maintain my milk supply when they placed Setri on nil-by-mouth. I told the registrar that no-one had taken the time to speak to me about expressing when they had taken Setri off oral feeds. She would make sure someone talked to me about it, she assured me. I had been expressing, I told her. I wanted to tell her that wasn't the point. The point was the poor procedure, poor patient management, a failure to recognise the importance of breastfeeding. But I finally- inevitably- lost my composure and started crying. I apologised to the registrar, but I couldn't stop. Across the nursery, Setri was crying too. The registrar hurried across the nursery, saying something to the nurses about Setri and I both being very upset and that it was in the best interests of both of us that they get him out of the isolette so that I could hold him.
So Setri was placed in my arms.
Although I was wearing a gown, Setri pecked desperately at my chest, making little 'eh eh eh' noises, trying to find a breast, growing distraught again when he couldn't find a feed. I tearily apologised to him again and again, telling him in a whisper that I was so sorry, I wasn't allowed to feed him. I stroked his head and eventually he gave up and stopped crying, nestled in my arms. He had lost a noticeable amount of weight since the day before, and bore such an unhappy, weary look on his little face that it tore at my heart.
The more senior registrar came to talk to us about putting a nasogastric tube in Setri. He had been on a glucose drip for a significant proportion of his short life, she said. He really needed proper nutrition now or it would start to affect his growth. “What you're saying,” I said, getting teary again, “Is that he's getting malnourished and he needs breast milk”. The registrar agreed. “So why don't you let us feed him?”, Gam asked. “We don't know how he'll tolerate oral feeds”, the registrar replied. Without showing his perfectly justifiable frustration, Gam repeated that Setri had been tolerating oral feeds, he had been feeding well until they arbitrarily placed him nil-by-mouth, and what's more, on his previous admission to Special Care Setri had been breastfeeding while hooked up to those very same monitors and the breastfeeding had had no adverse impact on Setri's respiratory rate, heart rate or pulse oximetry. Which was why, he reiterated, Setri had been discharged to go upstairs with me in the first place. I was so grateful to have Gam do the talking for me. I was exhausted and emotional, and incapable of standing up for myself any longer. Gam was just as exhausted, but he fought for me.
To no avail. Our only options were that Setri stayed on the glucose drip or that we agreed to a nasogastric tube. It was effectively an ultimatum: either Setri stayed on the glucose drip and got malnourished or we let them intubate him and he would get breast milk fed into his stomach via a tube. I thought of all that colostrum sitting in the fridge. I thought of the adverse effects on Setri of him not getting colostrum, of not getting breast milk, of quickly becoming malnourished. And I cracked.
Gam looked at me. “What do you think?”. I looked up at him, still cradling Setri. I looked into his eyes. I couldn't look at the registrar. I couldn't address the registrar. “Maybe it's better that he gets something rather than nothing at all”, I said to Gam in a small voice, through tears. “Are you sure that's what you think?”, Gam asked. “I don't know,” I said. “They're not going to let us feed him. Maybe it's better than him getting malnourished”.
“If you're sure,” Gam said.
We weren't sure. We were painted into a corner. We know better now, but at the time the doctors portrayed our choice as being between us having a malnourished baby and us having a baby being fed via nasogastric tube. If we chose not to let them put a nasogastric tube in Setri, it was implied, it was our choice that was going to lead to Setri being malnourished, not something that the doctors did.
That was why we broke our resolve and agreed to the tube. We felt disgusted with ourselves, but there was no other choice, was there?
It was suggested by the registrar that we might want to leave while they carried out the intubation. It was Gam who said no. Gam's training as a speech pathologist meant he was familiar with the procedure and how it should be carried out, and he insisted on being there so he could ensure it was done properly. He offered to hold Setri down while it was done. He told me to stay seated and not to try and watch. It nearly killed me to hear what was happening to Setri, our beautiful little boy. Our healthy little boy for whom we consented to being subjected to an unnecessary and invasive medical procedure against our better judgement. It must have been a hundred times worse for Gam.
Tears were pouring down my face as I listened to Setri struggle against the nurse and against Gam as the tube was worked up his nose and down his throat. Visitors to the nursery were looking at me by this stage as I sobbed quietly next to Setri's isolette, but I didn't care. Setri's screams were muted as soon as the tube went down his throat, to a bizarre, strangled scream. It was as if he were in one of those nightmares were you try and scream for help but no sound will come out. His cry was quiet, hoarse and squeaky, but I could tell he was struggling with all his might.
Just when it sounded like Gam and the nurse had finished, Setri coughed up the tube.
Gam and the nurse were talking. There was no evidence of gastric aspirate on the end of the tube that had been fed into Setri's stomach- evidence to show that the tube had reached the correct destination instead of going into his lungs, where if a feed were directed it could kill him. Nevertheless they were both reasonably confident it had gone to the correct location before coming back up. They set about re-intubating Setri, who continued to struggle with all his might, his voice hoarse and terrified as he tried to scream. Just as it seemed all over, once again Setri coughed and coughed and worked the tube all the way back up his throat and into his mouth. I cried and cried and cried. I must have made things so hard for Gam.
“See that?”, Gam told the nurse. “There are two coils of tube right at the back of his pharynx. You tell me, if that had happened during a feed and no-one had noticed, that he wouldn't have aspirated.”
The nurse agreed. It was true. Giving Setri a nasogastric tube posed a very real risk of complications. Even death. If Setri was being fed via NG tube and coughed the tube up, the milk could end up in his lungs instead of his stomach. At best that would mean a lengthy stay in hospital; at worst it would mean he died- even very small amounts of feed aspirated into the lungs can result in aspiration pneumonia.
We were withdrawing consent for the nasogastric tube, Gam told the nurse. “And I want that noted in his file,” Gam said. “I want you to write it down now, while we're here.”
Setri lay still now, traumatised and exhausted, his breathing hoarse, ragged, his respiratory rate through the roof at around 120 breaths per minute. If there were concerns about his breathing before, the attempt to fit a nasogastric tube had made everything so much worse. Gam and I were instantly full of regret for consenting to the procedure. Bemused, too, at how easily we had been coerced into changing our minds and agreeing to it. It wasn't quite so elementary as that- Setri's life was at stake. His wellbeing, for which we, as his parents, were ultimately responsible, had been compromised. However much damage the hospital environment had done to him, we bore ultimate responsibility. We had let our baby down. We had allowed the doctors to order a procedure that we knew was against his best interests, that we knew was harmful. I felt beaten. Pathetic. How easily we had compromised ourselves, and our little boy's life. I was disgusted with myself. But even then I didn't stand up for myself; we had stopped the situation from deteriorating even further, but we hadn't improved anything. We resolved, at least, not to make the same mistake again.
We left Setri to rest.
Back in my room, Mum phoned. They were still in Walcha she said. I could hear the annoyance in her voice. Dad had wanted to wait until the stock market opened because he had some business to take care of. Mum told me they would be leaving very soon. After hanging up I joked to Gam that she would probably take the car and leave Dad in Walcha.
While in the Special Care Nursery, Gam had snuck a look at Setri's medical record and noted the reason for his first admission to the nursery on the night of his birth: Respiratory Distress Syndrome (thereafter abbreviated as RDS). We both knew that was a bullshit diagnosis. Thanks to my familiarity with the research literature on premature babies I was aware that it was extremely unlikely that Setri had RDS, for the simple fact that it is predominantly a disease that affects preterm babies. Sure, probably 99% of the infants who pass through Special Care are preterm and do have RDS , and therefore probably would've looked plausible in the stats for admission, but it obviously didn't apply to Setri as he had none of the key signs bar fast breathing- which can be a symptom of a whole host of things, or a symptom of nothing at all. The list of differential diagnoses had since been expanded, then nearly exhausted and was now well into the realm of the utterly implausible. When was one of these so-called doctors going to call a halt to the stupidity? Were they really so reluctant to make their own observations instead of acting solely on the dubious notes of the very first doctor to see Setri?
Karen, my midwife, dropped by my room to see how we were going. We told her that Setri was on nil-by-mouth and explained why we thought that decision was particularly stupid. I could tell she was inclined to agree, though she didn't say as much. When I told Karen that the hospital was trying to discharge me because I was not breastfeeding she seemed angry. “Don't you worry”, she told me. She would go and speak to some people and sort it out. I would not be going home while Setri was still in hospital. Karen knew as well as I did that once I was discharged, the chances of breastfeeding being resumed in a timely fashion- if at all- were greatly diminished. With the generally unsupportive attitude of the Special Care doctors towards breastfeeding, the prospect was even slimmer.
We spent a few hours in my room, Gam falling asleep once again on the bed while I read a book. The one positive aspect of being forced to spend the night without Setri is that no-one came around to hassle me and I had had a few hours of sleep under my belt. As poor-quality as it might have been, suffering constant interruptions from the ward noise, it was better than suffering the constant interference of overzealous midwives. That said, the previous night's midwife struck me as someone who would have been more respectful and inclined to listen to me; had she been rostered on the previous two nights we may not have wound up in that situation in the first place. I especially harboured a lot of ill feeling towards the midwife from the second night, the one who had brought the registrars. Without Setri to take care of, I had a lot of time to dwell on things.
Out of the blue a senior registrar from Special Care showed up in my room to discuss Setri's case. This was the first doctor, it seemed, who realised that we were both educated and medically literate and that fobbing us off like we were idiots was not going to help anyone. We had been there 4 days and she was the first doctor to take us seriously. The first doctor not to treat us like simpletons and attempt to scare us into agreeing to everything by trotting out the 'he could be about to die' line.
Where were they up to in terms of the differential diagnoses?, we wanted to know. They had ruled out all of the most likely (meconium aspiration syndrome, infection, pulmonary hypertension) and were now looking at things like heart defects and oesophageal fistula, she said. They had booked an ECHO with a cardiologist, she told us, hastening to add that there was no evidence at all of a heart defect. Oesophageal fistula was even more improbable, Gam pointed out. Gam, as a speech pathologist, knew that if there had been an oesophageal fistula we would have known about it well before this point, as Setri wouldn't have been able to tolerate any oral feeds whatsoever; there was nothing to indicate a fistula and the doctors were clearly grabbing at straws if they were seriously considering this as a diagnosis. He pointed this out to the doctor.
"Oh. That isn't in his records", she said, upon being informed that Setri had been breastfed right up until his second admission to Special Care. It wasn't in his records that he had been breastfed at all. That changed things somewhat, she said. They would meet tomorrow and give us an update on diagnosis. At this stage Setri was still to be hospitalised indefinitely and she could not give us a prospective release date. We still weren't to feed him, she said. After tomorrow's meeting, perhaps.
We visited Setri again. We would have gone earlier but we had to wait for the 'no-visiting hours' to be over- once again prevented from seeing him because we I was not breastfeeding him because they had stopped me from doing so. God that made me angry. Setri's breathing was still coarse and rattly from the trauma of the nasogastric tube. Gam reassured me that he was ok and that this was not indicative of any problem. His breathing was still faster than the normal rate of 40-60 breaths per minute; his blood oxygen saturation had dropped during the intubation, Gam told me. Thankfully, it was fine now. I wanted to get Setri out for a cuddle, while Gam thought it best that he be allowed to rest- he was still sleeping out of exhaustion from the effort of twice coughing up the tube.
Back at my room we waited for my parents. They rang for directions and Gam and I groused about my dad's refusal to buy a GPS. Gam kept watch on the traffic below from the window, eventually spotting their car.
Once my parents had made their way to my room we took them down to see Setri.pissed me off
“He's a perfectly healthy baby,” I told my mum. “Once you see him, you'll understand.”
And they did.
Setri looked more perfect than ever. The rattle had faded from his breath and he actually looked peaceful. He had chubby cheeks, good skin colour, and would have put any other newborn in the hospital to shame with his ruddy good health. But he was in an isolette and they weren't.
“Oh.” Mum said. “He's beautiful, isn't he?”, I said. “He's beautiful,” Mum echoed.
The registrars had ordered that an echocardiogram be carried out, and when we arrived the cardiologist was there with the large machine. He wouldn't be long, he told us. There was no hurry. Setri looked a lot happier than he had earlier, and we were happy just to gaze at him while the man finished his work. The registrars had admitted to Gam and I that there was absolutely nothing to indicate a heart problem, but it was clear that by this stage they had had to discard the more likely of the differential diagnoses and were grasping at straws. We were happy for the ECHO to be carried out, as it was not invasive. Unlike the drip, for which there was no indication, and the nasogastric tube, for which there was no indication either but which carried real risks.
The cardiologist told us “he's fine”, appearing somewhat puzzled as to why he had been asked to carry out the ECHO, and left. Now we could get Setri out of the isolette for his first cuddle from his grandparents.
At that point a nurse came over to tell us that we had too many visitors and one of us had to leave. We were puzzled- we only had 2 visitors. It turned out that we were all visitors. Even Gam and I, as Setri's parents, were considered visitors. Hadn't anyone informed us of the rules?, the nurse asked. There was an information booklet we were supposed to have been given upon Setri's admission, filled with rules and information. No-one had informed us of the existence of any such booklet, nor given us one. Gam said he would wait outside. Mum and Dad both offered to leave, but there didn't seem to be any point in that, seeing as we had brought them down to meet him for the first time. Still, Dad insisted, and left to wait outside the nursery until one of us came to swap places with him. Gam and I had brought Mum and Dad to see their first grandchild for the first time and now one of us was being kicked out. One more thing that we should have been able to do as a family, put paid to by the RBWH Special Care nursery. Somewhere Setri never should have been in the first place. My parents were starting to get the picture.
We asked to get Setri out of the isolette. “You hold him first. He'll want a feed,” she said. “They're not letting us feed him”, Gam and I said, almost in unison. “What?!” exclaimed Mum. “That's stupid!”.
When Gam passed Setri to me, Setri was clearly looking for a feed. He opened his mouth, puckered his lips and frantically pecked at my gowned chest. “Just feed him.”, Mum said, all her previous notions of strictly following doctors' orders now well and truly abandoned. “There's nothing wrong with him- look at him, he needs a feed!”.
It was heart-wrenching looking at Setri desperately searching for a feed. He'd lost a noticeable amount of weight since being taken away from me, and I nearly started crying again as it dawned on me just how much lighter he had become.
Gam and I had resolved that we would start feeding Setri again. We had decided to front up to the doctor and tell them that either they let us feed Setri in the Special Care nursery, in their presence, or we would discharge him and breastfeed him at home. It never occurred to us that we could do what Mum suggested and just ignore the nurses, forget about waiting for the doctors, and just give Setri what he needed. No, we told Mum, we were going to feed Setri, but not until we'd told the doctors about it. Lord knows why we didn't have enough guts to do what Mum would have done! Gam asked a nurse if we could see a registrar, but we were told they were busy and we'd have to see them later. So we held off feeding Setri. Weak.
Gam left the room so Dad could come back in. It felt so wrong, Gam having to leave and loiter in the corridor like some kind of stranger rather than the father of our baby. Mum sat down and I passed Setri into her arms. Her eyes shone with tears behind her glasses as she sat cradling Setri, who was now asleep. Tears came to my eyes, too. I knew how much Setri meant to her, how much she had looked forward to meeting him. He was beautiful, too. Not a fragile, pink newborn, more like a plump 3-month-old, and seemed obvious to all but the Special Care doctors that he was perfectly healthy.
Mum asked me to take some photos of her holding Setri on her mobile phone so she could show people. She was bursting with pride. It would be her 'GrannyBook', she said, the semi-computer-literate grandmother making a play on the concept of Facebook. While Dad and I struggled to figured out how to take photos with the mobile phone, I asked Gam to come back in for a minute with our camera so he could take some photos of Mum and Dad with Setri. I was going to leave so we wouldn't be breaking the rules, but Gam told me not to be silly. He took some photos of the three of us with Setri, plus some of Setri alone, snuggled in Mum's arms.
Mum left the room after that so Gam could come back in. Gam held Setri so he wouldn't get upset: every time I held him he ended up distraught because I couldn't (or wouldn't) feed him. Dad stayed behind and we talked briefly about what had happened up until that point, once again leaving out my experiences with the Special Care Nursery registrars. Gam and I told my parents that we planned to discharge Setri the next day (Friday) no matter what. We would have to get a doctor to sign off on his discharge, which probably wouldn't happen until at least late morning, we told them, so they may as well wait and visit us at home in the afternoon. Why we assumed after so much precedent that everything would finally go to plan, I don't know.
Mum and Dad were staying with my cousin Rachelle, so they left the hospital to drop off their luggage, planning to return some time after peak hour traffic had died down. Visitors were allowed to the Special Care Nursery at all hours of the evening, I told them, so we would take them down again to see Setri.
Gam and I went back to my room after that, but I don't remember anything that went on in that time. What happened next we both recall with great clarity.
Mum and Dad having returned to the hospital, we once again headed down to Special Care Nursery. There were new nurses on duty this time, and a new doctor- a male registrar this time.
Dad waited outside and Gam, Mum and I washed our hands and gowned up. The nurses greeted us and one suggested I have some skin-to-skin time with Setri. Seti immediately went crazy with his desire for milk, pecking at my chest and making 'ah ah ah' noises. I tried to sneak him down and cover him with the gown a bit so I could surreptiously feed him. “Put him up higher,” the nurse said, “otherwise it's like you're teasing him”. That nurse seemed bossy enough to kick up a fuss if I tried to feed Setri; most of the other nurses didn't even really seem to think Setri was sick and just carried out orders, but I had a feeling that the bossy one was one who liked to curry favour with the registrars.
“Just feed him,” my Mum said.
I felt all knotted up inside. I wanted to feed Setri right there. He was desperate for a feed. It had been over 36 hours since he had last had milk, and my colostrum and transition milk was nearly all gone, I was producing more mature milk. Setri had missed out on most of the colostrum. Despite being so distraught and angry about the situation and determined to give Setri what he needed, Gam and I still wanted to 'do the right thing' and discuss our plans with the doctors. If I had my time over I would say screw the doctors, screw being worried about what they thought of us. Doing the right thing would have meant feeding Setri a lot earlier and not allowing ourselves to be put off for 36 hours to the detriment of our son's health. We had confused doing what was proper with what was right. So I said to Mum that we would wait a few minutes until we had told the registrar on duty what we were doing. Besides, I was scared of the bossy nurse.
Gam cornered the registrar. Gam did all the talking, as I was very much on the edge, emotionally, and not up to arguing a point. More than ever, I was grateful that I had such a wonderful partner, and that Gam was able to be strong where I wasn't. I was effectively drained of all strength by that point. Drained by the sleep-deprivation, by my experience at the hands of the overzealous midwife and registrars during my second night in hospital. I just didn't have anything left. I was a weepy, worthless wreck. I shudder to think of what I would have allowed to be done to Setri and me after that point had Gam not been around to stand up for me. I am so grateful that Gam was there, and I am so thankful that he knew exactly what Setri and I needed and wanted, and fought hard for us.
Gam laid things out for the doctor. We were not prepared to wait until some undefined time the next day for any meetings or discussions with other doctors. Setri needed to be fed and we were either going to feed him in the nursery, where they could observe the feed and how Setri handled things, or we were going to take him home and feed him there. Flustered, the registrar spoke of oesophageal fistulas- the latest of the differential diagnoses- and danger and death. Gam repeated what he had said to the senior registrar earlier in the day: there was nothing to indicate a fistula and the doctors were clearly grabbing at straws if they were seriously considering this as a diagnosis. At that point the doctor received a call on his pager and told us “I have to attend an emergency caesarean. We'll continue this discussion when I get back.” I couldn't even look the doctor in the face, I was weeping the whole time. It was hard to muster any appearance of credibility when I was all too aware that in his eyes I was simply an ignorant new mother, and an obvious hormonal wreck.
Unsure of myself, I asked Gam whether that meant we'd have to wait for the doctor's return in order to breastfeed Setri.
“No,” Gam said. “We've done what we said we'd do, there's nothing more to be said. We're going to feed him.”
Thankfully, the bossy nurse had just finished her shift and left. The new nurses were more laid-back and less intimidating. I didn't feel scared of them.
Setri latched on with all the hunger and eagerness of a baby who had been starved for half of his short life. My mum beamed with relief. I whispered to Setri how sorry I was, how sorry I was that I had played a part in denying him what he needed. I couldn't believe I had held out for so long when feeding Setri was so obviously the right thing to do. I wasn't surprised that he could 'tolerate' the feed, that nothing bad happened. I felt deeply ashamed of myself for being so weak and putting our own need to be seen as responsible by the doctors ahead of Setri's need to be fed. Setri was content. He was getting what he needed for the first time in 2 days. It felt so right to be feeding him, and while I was still shedding tears, I felt that a massive weight had been lifted. I was unspeakably glad we had defied the doctors' orders.
The nurses saw everything that was going on. Gam told them we weren't going to wait to discuss anything else with the doctor. “I'll just record it as nuzzling, then”, one said, willing to turn a blind eye. I practically melted with gratitude at her reluctance to make a fuss over our refusal to follow doctors' orders. It meant I could simply enjoy cuddling and feeding Setri, poor, beautiful, deprived little Setri, who was finally getting what he needed.
The registrar returned from attending the emergency c-section. It was obvious to him straight away that we were feeding Setri, despite the nurses both feigning ignorance and saying “he's just having a little nuzzle”. What was also immediately obvious to the registrar was that Setri was absolutely fine, just as we'd said he would be.
To his credit, the registrar played the cards he was dealt, and just as well: having gained confidence from our defiance of doctors' orders and Setri's obvious satisfaction, Gam and I were in no mood to be messed around again. We knew that the registrar was simply going by the information that had been left for him, and he was just the latest in a long line of registrars who were unwilling to question the orders of the registrar who admitted Setri to Special Care in the first place, despite the subsequent lack of evidence for any of the differential diagnoses they could come up with, let alone the 'Respiratory Distress Syndrome' that the admitting doctor had recorded as the reason for his admission.
What I would need to do now, the doctor said, was come down to Special Care every 2 hours to feed Setri, who had now happily passed out in my arms. I would need to start with small feeds, he said, to allow Setri's digestive system to adjust after having been deprived of food. I didn't foresee a problem with any part of those instructions. Setri had only taken a small amount at this first feed, and seemed to know how much he needed. As for getting up every 2 hours, that was a piece of cake. My spirits soared at the thought of getting to see Setri throughout the night. Another registrar would see us in the morning, said the doctor, appearing relieved that someone else would have to deal with us as he bid us goodnight.
For the first time in what seemed like an age, things were looking up. Gam and I were determined that we'd take Setri home the next day. We didn't want to risk more bullshit, and we told my parents to expect to visit us at home in the afternoon.
On this matter, too, I can't believe that I didn't think to assert myself properly earlier. I had only ever given them permission to observe Setri. Placing him on a glucose drip and putting him nil-by-mouth was something they did that was not only against my better judgement, it was in violation of what I'd told them they were allowed to do. Depriving Setri of colostrum was actively harmful to his wellbeing. We spent far too long arguing that point with disinterested medical professionals who thought we were stupid. We bitterly disappointed ourselves by giving in to the registrars' insistence on a nasogastric tube. Throwing that back in their faces and feeding Setri against their instructions was the best thing we ever did, and we should have done it sooner. Why didn't we? We wanted to work with the doctors, not against them. We wanted them to see that what they were doing was not best practice, and agree to do the right thing. We gave them too much time, at Setri's expense, and they failed us all. If that nasogastric tube had succeeded they would have had the excuse they needed to keep him in hospital indefinitely. Gam and I really beat ourselves up over nearly allowing that to happen.
We went back to my room, only to find that I was being moved to the gynaecology ward, along with a bunch of other women who were either pregnant or whose babies had been taken away. They were running out of room in the maternity ward. Instead of a single room-mate I now had five. We would still have a midwife on duty overnight, I was told. Being accommodated in the gynaecology ward meant a much longer walk to Special Care, so Gam was a little angry on my behalf. I was still fairly fragile, physically, and he was worried it would be too much for me to walk the distance on my own every 2 hours. I told him not to worry. Walking was still difficult, but I was so elated that I was allowed to feed Setri that I felt I was floating. It wouldn't be a problem.
Gam and I went down to the food court level to buy Subway sandwiches for dinner. My parents had decided to stop for dinner there too, before heading home to my cousin's place. I hesitated for a second before ordering jalapenos and hot sauce on my roast beef sub, worried about the possibility that the spicy food would somehow put something in my breast milk that would upset Setri. I was paranoid about everything now, that anything could become an excuse to keep him in hospital. The main topic of conversation around the table was, of course Setri. My parents, having seen him, were as bemused as we were about the doctors' insistence on keeping him in Special Care. They weren't angry like we were, though. We hadn't told them the full story. I had had enough of stifling tears.
We bid goodnight to my parents and went to Special Care to feed Setri again. Sure enough, he had just woken for a feed. We sat together and cuddled him in our arms afterward as he fell asleep. Something suddenly occurred to me: Setri's hair seemed very clean, apart from a small hard clot of what looked like old blood stuck in his hair at the back. “Do you think they give them baths down here?”, I asked Gam. We hadn't been able to give Setri a bath before he was taken away for the first time. Since then, so much had happened that we hadn't thought of it since. “I don't know”, said Gam. They weren't allowed to cut the babies' nails, we had been told- something we would have liked them to do because Setri's nails were so long and sharp, and he was accidentally scratching his face. “Do the babies get baths here?”, Gam asked the nurse. They did, we were told. If they were very sick they were given a sponge down with a wet cloth, otherwise they got a bath every couple of days. “Another thing we've missed out on”, Gam muttered. We felt unaccountably sad about that one. It wasn't that we had been hung up on little milestones like that before Setri was born, but it was something that had been taken away from us without any acknowledgement, let alone permission. If Setri had actually been sick it would have been another matter, but he wasn't. The fact that we didn't get to give him his first bath just served as another symbol of what we'd missed out on as a result of the actions of the medical staff responsible for his admission and our incarceration. Suddenly that first bath seemed a lot more important. One more thing they'd taken away from us as a family. It would have been a small thing to ask if we wanted to be involved, to take photos, to help bathe him.
Gam stayed for as long as he could before heading off for the night, telling me to let him know every time I headed downstairs to feed Setri. I promised that I would keep my mobile with me at all times.
The midwife on duty was an older lady. She struck me as old-fashioned and motherly, in a nice way. She asked about Setri and told me she would wake me every 2 hours. I didn't need the help, but it was nice to have her as backup. I smsed Gam before I fell asleep to make sure he got home safely. I was justifiably worried that he was too sleep-deprived to drive. Relieved that he had, I set an alarm on my mobile phone for one-and-a-half hours' time, placed it under my pillow and fell asleep.
I was jolted awake for the first time by my phone's vibrations, and as I pulled on some clothes I saw the beam of a torch. The midwife had come to wake me. I thanked her, went to the bathroom, filled my drink bottle, messaged Gam and headed off to Special Care. I tucked my phone into my tubigrip because I had no bra and no pockets. Gam answered within seconds, well before I reached Special Care. He had obviously lain awake waiting to hear from me.
When I arrived at Special Care I was informed by the nurse that Setri had just started crying for a feed. I washed my hands and gowned up at lightning speed, the requisite 30 seconds of hand-washing seeming to take an age. The day and a half of deprivation had not dampened Setri's instinct for breastfeeding, but the constant scaremongering by the doctors had affected my confidence. Even though Setri fed happily, I was conscious of every little noise. He was still hooked up to the monitors, and the sticky pads would periodically detach and set off alarms. I watched the monitors like a hawk, afraid that for once they would show that Setri's oxygen saturation levels were dropping when he fed. They never did, but I felt I had to monitor everything that was going on all the time so that Gam and I would be able to hold our own in discussions with the doctors. Even the 'comfortable' chairs provided for breastfeeding- and Gam had ensured I was set up with the much sought-after recliner- got uncomfortable very quickly, but despite everything I still felt blissfully happy holding Setri and talking quietly to him. Seeing him happy was so satisfying.
Setri fed for around 20 minutes before dropping off to sleep, and while I felt I could have held him all night I knew I should sleep. I reluctantly laid him in his crib (he had been removed from the isolette in the interim) and waltzed out of the nursery with a huge smile on my face. I felt happier than I had at any point since Setri was born. Thanks to Gam standing up to the doctors we had started feeding Setri -and oh thank god, I thought, that the nasogastric tube had failed, or we would be staring down a tunnel of further unnecessary medical intervention with no end in sight. We dodged a bullet there, I knew. But Setri was fine, and now, maybe, finally, it would become obvious to the doctors that he was fine. Surely?
I made my way back through the empty hospital corridors to my bed, making sure to fill my drink bottle at the sink and have a big drink of water so I'd be well-hydrated for breastfeeding. I smsed Gam to let him know I was safely back at the ward. Again he replied within seconds, so I knew he had been waiting up to hear from me instead of going to sleep. I messaged him again and told him to get some sleep, then I set my alarm for an hour and a half's time.
This time it was the midwife on duty who woke me. Special Care had called, she said, Setri had awoken and wanted feeding. I had the panicky thought that I had somehow slept through my alarm, but I checked and discovered that Setri had merely woken 10 minutes early. I hurried through a visit to the bathroom- I would have waited but I needed to change my pad. Paranoid about bleeding on the floor again. I smsed Gam on the way down. He was obviously still waiting up. Another woman was there to feed her baby, too. I had seen her last time I came down, too. She gave me a long-suffering smile. From what I overheard of her conversation with the nurse, she had volunteered her baby to be taken to the nursery. Her baby girl wasn't a premie, she had just been waking every hour for a feed and not taking much at the breast. When the midwife had offered for her to be taken downstairs and looked after so she could get some sleep, she accepted. She had other children at home too. That would be weird, I thought. Being in hospital to have a baby, away from not only your husband but your children too.
This nurse was a good one. Whenever Setri's alarms went off, she switched off the machines so his feed would not be disturbed.
Setri once again breezed through his feed and fell asleep in my arms. He seemed to take a lot more at this feed, and I thought briefly of what the doctor had said about ensuring small feeds, before dismissing this. Setri knew exactly how much he needed. His last feed had been reasonably small and this one was bigger. It made sense. I left that place again with a huge smile on my face. It's hard to describe the unrelenting feeling of elation I had at being close to Setri again, at being allowed to feed him and give him what he needed. It felt so right. It would all have been so much better at home, with Gam, but after being deprived of contact with Setri for a considerable period it felt like a huge thing to be able to hold and feed him at all. Once again I laid Setri in his crib. He woke up this time, but the nurse on duty reassured me that he would fall asleep very quickly and that I should go upstairs and get some sleep. While walking the hospital corridors, Gam phoned me, concerned that I hadn't been in touch since letting him know I was heading to Special Care. He still hadn't slept. I had just got out of the nursery, I told him, and was on my way back to bed. Please, sleep. You need it.
I ran into the midwife as I re-entered my room. How had the feed gone?, she asked. She sounded like she genuinely cared. I didn't think she knew about our situation, but perhaps it had been a topic of conversation among the midwives. It was great, I told her, beaming. I liked her. When I told her that I didn't think Setri should be in Special Care she gave off a distinct aura of disagreement, without actually saying so, but I had the distinct impression she cared about how I was going.
Once again I made sure to set my alarm. The last feed having taken longer, I could only afford an hour and ten minutes' worth of sleep until the next feed. For a second I wished for longer, so I could get a decent sleep, then mentally scoffed at my silliness. I was going to see Setri- sleep didn't matter. Besides, I thought to myself, when I got home I'd still be waking every 2 hours.
An hour and ten minutes later I was awake again, and glad of it. I followed my new routine: dress, drink a bottle of water, pee, message Gam, then head down to Special Care. In Special Care, Setri was just stirring for a feed. There was no sign of my midnight-feeding compatriot this time, although her baby was still there. I overheard the nurse talking to another nurse. The baby had kept awakening and demanding feeds on the hour. The woman was exhausted at being phoned every hour to come and feed her baby. The last time it happened, the nurse had offered to give the infant a formula feed so the woman could at least get another hour of sleep. “I gave her 30mL of formula,” I heard the nurse tell the other nurse. Tough call. The nurse obviously felt like there was no other choice that would preserve the mother's health. It was so quiet in Special Care during the night that I was eavesdropping on the nurses partly by accident, but when they dropped their voices I would strain to hear them in case they said something about Setri. None of the nurses treated Setri like he was sick, and ever since I had overheard the nurse questioning the admitting registrar on why Setri's pulse oximetry monitor alarm had to be set so high I had tried to keep my ears open to further snippets of dissent. To no avail, really. I didn't hear them talking about Setri at all. Either they were too clever to talk in front of us, or they had actual sick babies to worry about.
Back to bed.
I was once again in Special Care cradling Setri when the sun came up. Things always seemed to get busier after sunrise. I really preferred the place at night. It was almost pleasant to be there on my own, with Setri.
