Tale of Two NICUS

Part I

OK, so where was I before I got distracted? Oh yes: in the NICU.

How could I forget? It’s not like I’ve really left there. I can still hear the bings, bongs and high-pitched screams of the monitors when I close my eyes, see the waves of respiratory rate ebb and flow, and most of all, I can smell it, that simultaneously hygienic and nauseating smell of hand soap. I sometimes wonder if I’ll ever leave that place or more accurately those places. For ours is a tale of two NICUs.

Seeing Mr Boo for the first time was amazing. He was small (although at 3lbs 11oz at 29 weeks, not that small), but he was perfect in my eyes. I was elated and couldn’t believe how I’d spent much of the night before worrying I wouldn’t bond with him or that it couldn’t be possible to love him as much as his big sister.

I saw him and I adored him. Then I looked again and the love was polluted by a fear so intense it hurt. Both the love and the fear have only deepened since.

I honestly don’t think I saw the CPAP tube, the wires (so many wires) and cannulas that were helping to keep him alive when I first looked at him. I initially thought the woolly hat he was wearing was cute (it kind of was) until I saw it wasn’t designed to be aesthetically pleasing. The hat was keeping the breathing apparatus attached; there was a flap so they could scan his head. Little did I know how those scans were going to change our lives. He had no eyelashes and his body was covered in fine hair. And then I saw his skin and with horror realised I could almost see through it, or at least through those bits that weren’t black with bruising.

The lovely unit sister who I’d first met in the delivery suite the day before talked me through the various monitors and told me not to panic when the alarms went off. I couldn’t believe how something so unnatural and terrifying could be so normal to anyone, why alarms didn’t cause people to start determinedly running like in ER. (I later realised they sometimes did.) Then a consultant came over and explained that Mr Boo could participate in a trial treatment for preventing NEC. It was the first of many acronyms (CLD, PVL, IVH …) that I would have to get up to speed with during the crash course in neonatal physiology every NICU parent is put on. Crash course is right. Reality hit and my air bag wasn’t going off.

Everyone had told me Mr Boo was a marvel. He had no obvious health problems and despite arriving too quickly for steroids he’d got off the ventilator within 24 hours and was breathing with CPAP. He’d even managed several hours in air. And he was an unfeasible size for a 29-weeker. He was strong. But I now realised that he was also terribly vulnerable. He could succumb to NEC or any number of problems I was now googling between this day and that as-yet-unknown day, hopefully some time in the next 11 weeks, when he could come home.

I was shown around the NICU and tried to take it all in: the layout of the unit (milk kitchen, expressing room, family room), the rules on hand washing and visiting. I didn’t remember a thing. I went back to my private room and felt liked I’d been beaten up. (Why couldn’t I cry? Surely I was supposed to be crying.) Then a nurse came in with an expressing machine and I found out what I really needed to be doing. I was amazed that any colostrum emerged and was pitifully embarrassed by the 10mls produced after 20 minutes of pumping. But I’d read the Bliss leaflet and understood the benefits for Mr Boo and it made me feel good. There was something I could do for him after all. But it made me think about and miss Sissyboo too. The last time I’d used an expressing machine I was pumping in the vain hope of trying to get through the excruciating pain of thrush and breastfeed her beyond six weeks of age. I failed. I still felt guilty about putting her onto formula so young (why?) and even more guilty that I’d let her down again now by not carrying Mr Boo to term. By giving birth 65 miles from home.

And then she arrived with The Grumposaur and I was happy, wonderfully happy for the few minutes before I realised I needed to be in two places at once. I couldn’t be the mum I wanted to be to both of them. Not now. Not with Mr Boo in hospital in one county and Sissyboo at home in another. As I write this, they are asleep in the same house, just yards from one another, but I still feel the same sense of disappointment and suffocating regret that I can’t be there for both of them all the time in the way I’d like to be. I never (and I mean NEVER) feel like I do enough for Mr Boo to help his development no matter how many hours I spend in appointments or doing physio with him. So why do I feel I let Sissyboo down every (and I mean EVERY) day by not paying more attention to her needs and wants? By putting Mr Boo’s health first too often.

I had to make a decision. Go home to be with Sissyboo and The Grumposaur or stay to be with my baby. The Grumposaur thought it was a no-brainer. They needed me (they did and I needed them); Mr Boo needed doctors. The only thing I could do for him was to express and a quick trip to Tesco would mean I could do that anywhere. The nurses thought I should stay. They said I underestimated the physical and emotional effects of the last 24 hours at my peril. The Grumposaur asked if there was any medical reason why I couldn’t go home. I had nearly had to have a transfusion and I secretly hoped that this would mean that they would say I couldn’t leave, so I wouldn’t have to make the decision. But they said my iron levels were OK so it was up to me. I went home. There was no right or wrong thing to do. There wouldn’t be ever again, I thought.

So instead of commuting to work, I commuted every day for two hours to a hospital to see my son. My sister, who coincidentally had two weeks holiday at the time, moved in and helped us. She came with me to see Mr Boo after dropping Sissyboo at nursery the next day and she was amazed by how well he was doing. I was taught how to do cares (wash, change and touch a baby in an incubator without dusturbing the wires or upsetting them when they were too young to want physical contact). It was just about bearable as far as anything so unnatural could be. I couldn’t remember that I wasn’t still pregnant, though, and turned down offers of cups of coffee and a medicinal Guinness because I didn’t want to harm the baby in my womb. I felt slightly mad. But it was bearable.

And then it wasn’t any more. On day 3 I was looking forward to cuddling Mr Boo for the first time. Instead, everyone had stopped smiling. We were told he had an infection and his infection count was dangerously high. He had to be reintubated. He was unable to accept feeds and was losing weight. A long line to deliver TPN (artificial nutrition) had to be inserted in his leg. He wasn’t responding to antibiotics. They needed to do a lumbar puncture. They wanted another brain scan, although the first had been normal.

He was very ill. You would think there wouldn’t be much difference between a relatively healthy and an unwell prem baby of Mr Boo’s gestation. They just lie there, after all. But it was palpable just how sick he was and for the first time since this nightmare began I truly understood that he could die. I hadn’t allowed myself to think this before. Why hadn’t it occurred to me?

It was Easter weekend and we tried to coordinate hospital visits with fun trips out with Sissyboo. Wherever I was I felt that I should be somewhere else. And then the bottom fell out of our world.

The sensitivity test came back. The sample had been contaminated so they couldn’t be certain, but it was likely he had contracted meningitis. He needed a platelet transfusion and was now being given a high dose of targeted antibiotics. It didn’t necessarily mean anything for Mr Boo’s long-term future, we were told. (How many times have we been told that in different situations since?) As a prem baby he would be followed up carefully anyway, so the problems the meningitis might cause would be picked up. But there was more bad news. He’d had a bilateral brain bleed. Hopefully it would resolve. If not, it could mean brain damage, developmental delay, cognitive and physical disabilites or cerebral palsy. We just had to wait and see. (How many times have we heard that since?)

I cannot describe the agony and desperation I experienced. I felt even more helpless than I had at any point since his birth. He nearly died. I left the NICU each day not knowing if he’d still be alive when I went back the next. But then, as quickly as he succumbed to the infection, he picked up. Within days of having targeted antibiotics his infection count was plummeting. He looked better. He was starting to tolerate minute quantities of milk. The long line in his leg might be coming out soon. He was back on CPAP. They might be able to transfer him to a hospital nearer home.

I got to cuddle him. Finally. The day I never thought would come. The combination of excitement and fear was dizzying. What if I disrupted a wire or tube? What if he didn’t want to be held? What if the alarms went off? They didn’t. He was fine. It felt wonderful. Sissyboo held his hand.

In the relay of the relatives, my sister passed the baton on to my mum who came to stay for a week while The Grumposaur went away with work for 7 days. It was supposed to be the last trip he made before I started maternity leave two months later. I know he didn’t want to go. I know he hadn’t wanted to work and leave me to drive down to the NICU to see Mr Boo on my own as he had so many days since the birth. I know self-employed people don’t get compassionate or parental leave. I know it makes me awful, but I couldn’t help feeling resentful. I still do. Thank God Mr Boo was getting better. I couldn’t have coped at all if he hadn’t been.

I started to forget about the brain bleeds. I focused on Mr Boo’s improvement and having cuddles with my boy. Two weeks after he was born things were looking up. On the day he started a cycle of 6 hours of CPAP and 6 hours in air I got home from the NICU feeling more positive than I had done for what felt like months. And then I got a phone call from the unit. He’d been a good boy, they said. (They always said that.) I wasn’t to worry. In fact he was so good they were going to transfer him to my local hospital 10 minutes away. An incubator was waiting for him in intensive care.

The transfer team was already on the way to get him. I couldn’t get back to the hospital in time to see him leave but they’d phone me when he was on his way. I felt sick, especially when they said they’d transfer him in air. I wanted to see him. I wanted to say goodbye to a bunch of people who had shown me more kindness than I knew existed. Mr Boo may have been ready to transfer, but I wasn’t. I phoned The Grumposaur and he was thrilled. This was a good thing. I agreed.

So why couldn’t I stop crying……?

Part II

The transfer team was terrific, phoning me several times during the hour and a bit journey from the hospital Mr Boo had been born in two weeks to the day before to one just a mile and a half from home. They gave me an ETA and advised me to call the unit to arrange a visit.

I’d fully intended to visit the local NICU before Mr Boo had transferred, but everything had happened so quickly. Seven days earlier we thought he wouldn’t survive meningitis. Now he was spending big chunks of the day breathing on his own and taking his first glorified taxi ride. I knew the new hospital, though, because Sissyboo had been born there. And how different could the unit be from where we’d been, anyhow?

Plenty it turned out. I phoned the unit and the ward sister said I’d be welcome to visit as soon as Mr Boo was settled. I was worried (of all things to be worried about on a day like this) that I didn’t have change for a locker. In the previous NICU we’d had to deposit bags, coats and other germ carriers in a locker room. The ward sister (who was just days from retirement) laughed and said ‘We don’t have facilities like that here, you know. You’ll have to lower your standards. You can hang your coat on a peg and take your bag in with you.’

I like to think that my sense of humour hasn’t deserted me over the past 13 months. OK it did for six weeks after Christmas, but that’s a whole other story for another day. But really, I didn’t find this vaguely amusing. What did she mean ‘your standards’? I hadn’t opted to give birth in a new, level 3 neonatal unit miles from home in the way you might opt for a home birth or a private delivery room. We’d crash landed there by accident. And really the only standards I cared about were those keeping my son alive. Trouble was I’d been taught that taking outside clothes/bags into a NICU was a hygiene issue. It was about standrards. This was going to take some getting used to.

When I got to the hospital I felt as nervous as I did on the day I first saw Mr Boo in an incubator. The sister pointed out the different parts of the unit. It didn’t take long; it was tiny. Good job. All I wanted was to see Mr Boo. I was shown a kitchen to make tea or coffee but was told it was mainly used by the nurses and there was nowhere to sit. There was barely room to stand. I was shown to the milk kitchen and was shown where the freezer bag of my milk had been stored. I asked about an expressing room and was told there wasn’t one and I should sit by my baby’s incubator. There might be a screen available. Might?

Then I was given a piece of paper with visiting rules on. My Mum could come most of the day. The Grumposaur could be there 24/7, but Sissyboo could only visit in a designated 2-hour period each day. Where we’d been previously, she had open access as long as she was with us. How would this work? I appreciated that siblings could be disruptive. She wasn’t, though, she was amazing. I appreciated kids could be germ factories, but obviously I wouldn’t take her if she were ill. We were a family of four. We needed to be together. I’d read about importance of family-centred care in neonatal units and didn’t realise that this was exactly what we’d had until we’d had to give it up.

We weren’t in Kansas any more and I didn’t like it.

Don’t get me wrong. The nurses were, with a couple of exceptions, lovely. And the unit got us home 6 weeks after Mr Boo’s birth at 35 weeks gestation and weighing the magic 5lbs. But it was just so much harder to be there.

The NICU was a room within a room. It was perpetually dark and the unit as a whole had little natural light. In the previous unit there were floor to ceiling windows and, of course, the incubators sometimes needed covering to keep the babies shaded, but it was a bright, almost cheerful, place to be. They understood that parents needed healing as well as babies.

It wasn’t just the facilities or rules, though. Few of the babies in the unit were prem. Many were sick but full-term. Thankfully most only spent a day or two there. The hospital didn’t take very prem babies and would likely have sent Mr Boo to another unit had he been born there. This conspired to make him look so very vulnerable against the much larger, albeit poorly, children. And it was hard to get to know other parents. Those that did stay more than a night or two found it difficult to talk to me.  They told me of their traumatic births and then when they asked me how long I’d been in the unit, how early Mr Boo had been born and what problems he had, the conversation stopped. I wasn’t trying to trump them in the traumatic birth story game. We were all traumatised. This was not a competition. But it meant they couldn’t talk to me. I didn’t blame them. But I wanted to connect. To stop feeling so alone.

Worst of all, though, were the consultants. It wasn’t their fault either (mostly). They didn’t know Mr Boo or us. The other unit had gotten to know us over 2 long weeks. They treated us with kindness. They never kept things from us or sugarcoated anything. But they were kind and their outlook was always cautiously optimistic. Not so now. The new team of consultants saw Mr Boo through the filter of the stark words on his discharge letter: meningitis, sepsis, grade 3 bilateral IVH. The spoke in hushed tones when I got them to speak directly to me at all and presented a grim future.

Many of their clinical predictions proved accurate. But our life is not grim. No one needs to speak of Mr Boo in whispers. The change in atmosphere and attitude set me on the path to depression. I’m just managing to put a toe on the grass verge to the side of the path some thirteen months later. No thanks to them at all, I must say!

Worst of all they leapt to assumptions. They didn’t think the breathing schedule our previous unit had used was right. They wanted longer stints of CPAP and less time in air. I thought this was wrong and wanted them to talk to his consultants at the other hospital. They refused. Their plan was seemingly borne out when Mr Boo started desaturating. It was terrifying. They were talking about reventilating him.

This will sound mad or arrogant. Maybe both. I knew he could breathe. I knew this wasn’t a respiratory problem. But they wouldn’t listen. Why should they? I went home each night, nerves frazzled after a day spent watching a monitor, seeing my son going blue in the face and having to administer oxygen from a pipe in the wall while a new neonatal nurse went for help, and did as much research as I could into what might be causing this. I didn’t know but I hoped I could find out.

Then one day it hit me. The desats always happened after feeds and were especially bad after they changed his feeding pattern (1 hourly to 2, for example) or his daily milk volume was raised to promote weight gain. This was a gastric, not respiratory, problem.

I told the nurses who thought I should tell the doctors. The doctors were sceptical. Then a new consultant came on duty (thank goodness) and I told her. She looked through Mr Boo’s file and paused for a while. ‘You’re right,’ she said, ‘your little man has severe silent reflux’.

The cocktail of domperidone, ranitidine and gaviscon took a while to kick in, but eventually it did. I started to feel like I was visiting my boy again and not the SATS monitor, whose rapid, loud beeps can still make my heart beat out of my chest. We were getting nearer the door on the way home.

As he started to improve I asked a nurse when she thought I could start kangaroo care. She said I could have started weeks ago and was horrified no one had told me. All those weeks of cuddles missed. Well, we made up for it and best of all, though still so little, Mr Boo wanted and knew how to breastfeed. I managed a few measly weeks with Sissyboo but 11 months on I was still feeding Mr Boo. He’d obviously read that bit of the baby manual. Pity he’d glossed the 40 weeks bit.

On May 19 2012, 6 weeks (that felt like 6 months) after our NICU journey began we got home. All our energies were focused on that day and I totally underestimated how hard it would be when we got home, how the journey was only just beginning.

But if you’re still in the NICU, let me tell you. In our experience, no matter how hard things get when you get home they are NEVER as bad again. Because you are at home, together, a family. As it should be.