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.