Monthly Archives: April 2013

Taking Each Day as it Comes. Not Today Thank You!

‘Just take each day as it comes.’ If I had a pound every time a well-meaning friend or even complete stranger said this to me …. I don’t think I need to finish this sentence, do I?

If you are a regular reader of blogs authored by the parents of children born prematurely or with additional or complex needs, you’ll have no doubt read many wonderful ‘what not to say’ posts, listing those often kindly-meant sentiments that can plunge us into despondency or despair. A particular favourite one of mine, by one of my particularly favourite bloggers, can be found here on Tatum’s Ain’t no Rollercoaster.

Much as I cringe or internally combust at the ‘I’m sure he’ll grow out it’ (brain damage? you’ll think he’ll grow out it?) or ‘well he’s a boy and they’re always a bit behind because they’re lazy’ (lazy? he has fought meningitis and battles the mixed messages his brain sends his limbs every minute of every day just to do the simplest things and you think he’s lazy?), my personal pet hate is ‘just take each day as it comes’.

After a concerned and kind mum said this to me (it’s probably about the 850th time someone or other has said it to me this year) at the school gates this morning, I started to ponder why this galled me so much. Living in the moment, after all, is an important life lesson and one I’ve come to appreciate the hard way over the last 13 months, during which I’ve spent so much time worrying about what was or wasn’t happening that I frequently failed to appreciate the little miracles (clenched fists opening, arms reaching out) that were happening each day. But she didn’t say ‘live in the moment’. And I don’t think that’s what she meant. She meant, I surmise from the rest of our conversation, don’t think too far ahead, don’t burden yourself with worry over what the next 18 years has in store. Take a step at a time.

It’s good advice, but I still can’t take it. What’s my problem?

First of all, it’s that this is such a redundant comment. How else can you live life other than by taking each day as it comes? All parents do this and, dare I say it, parents of babies born early or sick or with special needs have to turn this into an art form. So much is thrown our way. Everything can be fine. You can learn, as I did, to ‘take it’ that your little boy probably has cerebral palsy. And then when you think you can’t take any more infantile spasms can come out of nowhere to sideswipe you and ruin your little girl’s Christmas. But you know what? You take it and you deal with it.

So parents like me take and get took on a regular basis. But I still don’t want to take each day as it comes. Because underlying this trite little phrase seems to be an implicit criticism: that I am not leading my life in the best way; that I am looking too far ahead; that I am worrying too much.

Maybe. But you know, looking ahead, planning for the future, worrying … they are my prerogative. My job. I do these things for his healthy, older big sister and I have every right to do this for Mr Boo. In fact, he needs me to do it more than his sister does. Because very few things, beyond love and laughter, come naturally to Mr Boo. He and we have to MAKE things happen for him.

And that’s the crux of it all for me. Taking is such an ambiguous verb. We can ‘take the bull by the horns’. Great. Or we can be resigned and ‘take what’s coming to us’, ‘take one day at a time’. Let me tell you: there’s no room for ambiguity in our lives.

We are makers not takers, and as exhausting as it often is, I’m not going to relax into our new life. I’m not going to resist it either or tell myself I can conjure up a new reality by a misguided act of will. But I am going to plan ahead, to work out different possibilities, to research all the options and work with my family to do what’s best for all of us.

I know you’re trying to be kind. I know you want things to be easier for us. I am grateful. Believe me. I really am. But please, don’t tell me to take each day as it comes.

You see, I just can’t take it any more.

A Tale of Two NICUs: Part 2

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.

Good News Friday #3

How on earth did it get to be Friday again? This week has been a blur of form filling, work (even though I’m not yet technically back), writing blog posts I hadn’t meant to write, not writing ones I’d planned, oh and appointments. How could I forget the appointments?

So, time to pause. To reflect. To remember the good stuff and try to hold onto it when things get tough. (We’re seeing a neurologist next week for the first time. It’s going to be tough.) But we have lots to celebrate too.

So here goes and please, if you have good news to share about your little ones do write in the comments box. It really lifts my spirits!

Mr Boo’s physio appointment this week was a jolly affair. Apart from being completely uncooperative when expected to demonstrate his tentative commando crawl attempts (he really has perfected the I’m-not-a-performing-seal look), he did well. He is getting slowly closer to independent sitting and did some great weight bearing. For the first time we tried to get him to pull up to stand with some trunk support. I nearly cried. He was so happy at seeing the world from on high and laughed loud and long from his belly. And I loved seeing him upright. It gives me hope that one day he might be able to view the world like this for good. Maybe with an aid. Maybe not. Whatever: it was a wonderful sight.

My Homestart volunteer came round on Tuesday as she does every week for a couple of hours. This time she was bearing gifts. Mr Boo really needs his sleep but fights it like a tiger who’s just realised his keeper needs to sedate him to clean his teeth. It’s not pretty. I have the scratches to prove it. So does M, our volunteer. So she bought Mr Boo a lovely, soothing lullaby playing cuddly sea horse that had belonged to her grandson. She also bought me the number of a lovely lady who’s going to give our DLA application the once over before sending it off. I want to write a dedicated post about Homestart one day because they are amazing. Amazing! Today I just want to say, thanks M. We are so grateful for your can-do, understanding and non-judgemental friendship. It took me a long time to admit we needed help. I am so grateful it came in the form of you.

I was invited to take Mr Boo into Sissyboo’s school this week. Reception are learning about babies and have a baby clinic in their role play area. I talked a bit and answered questions. I think I got away with the, how do you know if your baby is a boy or girl when they’re born question. Just. But mostly I sat back and watched in awe as Sissyboo talked with a confidence it’s hard for her to muster, as well as a heartfelt joy and palpable sense of pride in her miraculous little brother who came early. He is so lucky to have her for his big sister.

Finally, portage starts today. I am so excited about this new (for us) therapy. Hopefully portage will be in our good news next week too.

OK. So how about you?

World Meningitis Day 2013

Today is World Meningitis Day. I found out, like I find out about most things these days, from Twitter, where I found a link to a moving post on Looking for Blue Sky. I couldn’t let the day pass without comment.

You see, Mr Boo’s health problems are only tangentially related to his premature birth at 29 weeks. He was born, so far as a baby born 11 weeks early can be, strong and healthy. And then at 3 days he contracted an infection and nearly died. You can read more about this horrible time here.

We still don’t know for certain that it was meningitis because the sample taken was contaminated, but we were told it was 99.9 per cent likely. That’s good enough for me.

We are lucky. Mr Boo survived, but not unscathed. Before he responded to treatment he suffered a bilateral IVH (brain bleed), which developed into PVL (death of white matter) and means he very likely has CP (cerebral palsy). He also has IS (infantile spasms, a form of epilepsy) caused by the damage. I live in a world of acronyms now.

We couldn’t have prevented Mr Boo’s meningitis. He couldn’t have been diagnosed or treated more quickly. But you might be able to spot meningitis in your child before the disease takes hold.

Please, please, please familiarise yourself with the symptoms of meningitis and trust your instincts if you are worried about a sick child. This is one of the many lessons I have learned since having Mr Boo.

Please look at the Menigitis UK website today and pass the link onto your friends. There’s lots of good information there and a helpful diagnostic video, too.

I am not writing this because someone asked me to. I am writing this beause we live with the consequences of menigitis daily. And I don’t want you to.

Getting Over Being Overwhelmed

I woke up this morning full of optimism. I’d had a reasonable night’s sleep by my paltry standards, my fab Homestart volunteer was coming to give me a couple of hours to catch up with myself, and I was going to get lots done. Heck, the sun even came out in smpathy.

But within a few hours, that all-too-familiar tidal wave of anxiety came over me. The knot in my stomach drew tighter. I was drowning. I had prescriptions to sort out, appointments to chase, emergency childcare to arrange when it turned out that the two next week, which I’d been assured would be mid-morning, clashed with school pick-up. I had a DLA form to complete (the shortest road to depression I have yet encountered – it’ll hit you by page 3 guaranteed) and two carers forms to fill out. I even had to chase a 3-month old referral to the keyworker who is supposed to be managing all our referrals. I kid you not.

Every form in which I had to list Mr Boo’s problems – PVL (brain damage), likely Cerebral Palsy, infantile spasms, developmental delay – felt like a punch in the gut. I needed distraction, and another cup of coffee was not a good idea, not if I didn’t want to do my best Mrs Overall carrying the macaroons impression. So I checked my blog stats.

I know this is not advisable for morale, especially as such a newbie blogger, but a few people do seem to read this (thanks!) and I love that. But before I got to the stats I stopped in my tracks. I looked at my blog header and just stared.

I long to put photos on this blog, I am a rubbish (and I mean rubbish) photographer, but I have a ton of photos and because my kids are in them they are fabulous, even if I do say so myself. More to the point, I know how much photos mean to blog readers, perhaps to none more so than readers whose children were born prematurely, or who have disabilities or special needs. To SEE how your story may develop is thrilling. If I could make one NICU parent smile by showing them what a robust and cheeky monkey Mr Boo is now, my day, week and year would be made.

But I am a secret blogger. No one knows I am writing this, not even The Grumposaur, who I fear might not get it or approve. Unless and until I out myself, I can’t very well put up pics of our kids on this blog. But I do have the joy of being able to see the real Mr Boo, to look at our header pic and see how far we’ve come.

The knot in my stomach starts to loosen and I can breathe again.

You are so much more than a list of diagnoses, Mr Boo. You are a marvel. And I love you and your sister more than I can say.

A 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……?

Good News Friday #2

Last week, I decided to make Fridays good news days. A little something to buoy me and hopefully others up through the weekend and remind me of all the good things going on in our life, but which can get buried under the weight of worry, incessant appointments and the business of just getting through the week.

And boy, do I need to write this post this week. To be honest, it’s been a pretty lousy seven days. It’s the second week that The Grumposaur has been away with work and the whole solo parenting thing is, as many of you will know, a challenge. On top of that, Sissyboo has been none too impressed about returning to school after Easter and been uncharacteristically naughty. Mr Boo has been settling in at nursery (I am SO not ready for returning to work, I’ve discovered) and has caused me to make frantic calls to one of his consultants following some odd physical behaviour. (We are putting this down to one of his quirks for now rather than anything more ominous. Please let this be the case.) The cumulative effect of this has been that my anxiety and depression, which peaked (or troughed, I suppose) around Christmas, have come back with gusto. Not fun.

But, depsite all of this, despite the fact that I have spent rather too long this week sobbing quietly when the kids weren’t around, it really isn’t all that difficult to find good things in our lives. Really. It even surpises me.

So here it is: my good news.

1) We don’t have to see Mr Boo’s prematurity consultant for eight months. Yes, EIGHT months! Now granted, this isn’t because Mr Boo is miraculously cured of irreversible brain damage. The reason is that his consultant has realised that he isn’t the best person to be leading Mr Boo’s care. Hallelujah! His developmental and epilepsy consultants, the neurologist we’ll be meeting for the first time next month and his fabulous physio are so much more important. And even if they weren’t, his prematurity consultant has the bedside manner of Dr Crippin. He is clearly oblivious tot the face Mr Boo is a person, not a case, and that I have feelings. The prospect of not seeing him until December is frankly thrilling!

2) Mr Boo loves nursery. I’ve posted about the hard time I’ve had about leaving Mr Boo at his two settling in sessions at nursery this week prior to me attempting to return to work in a little over two weeks. (Gulp!) But he seems to be having a ball. I could hear him laughing (he has a real, throaty, completely joyous laugh) both times I picked him up before I got to the top of the stairs. Moreover, the manager has jumped through hoops to buy toys that will help Mr Boo with his physio and a Cushi Tush, which is just about the only seat you can put him in to feed him. They don’t have a grant for this. I am relieved and grateful.

3) I got to go to the special needs baby/toddler group I have recently started attending for the first time in weeks. Admittedly I arrived an hour late (paed appointment…) but just half an hour in the company of these fabulous mums and their beautiful children in a place where difference is the norm, where acceptance and understanding are the rule and judgement is left on the doorstep, is as good a tonic as the spa day I went on with my sister years ago. (Note to self: attempt to go on a spa day again some day before retirement.)

4) I finished reading David Walliams’s Mr Stink to Sissyboo. One of the hardest things about our life with Mr Boo is worrying about its impact on Sissyboo. She adores him. She is totally accepting. She is a marvel. (I’ll tell you more about her in another post. She deserves her own post.) Yet, as you can imagine, she gets a loss less of my time and worry now we have Mr Boo. I have, though, made the time to read extra books to her in bed every night (after her pre-bedtime stories while Mr Boo has his bottle) and we have just finished our first full-length children’s novel. We’ve had a ball.

4) The Grumposaur comes home tonight. Now as his affectionate nickname suggests, we have our moments (don’t we all?), but I miss him. I miss him telling me not to be so daft and not to worry so much. I miss him not insisting I stop doing things and watch TV for half an hour before bed and unwind. I miss him passing me a glass of wine. I miss being able to talk to him.

5) Blogging. I recently answered a question posed on Twitter by Leoarna, author of the terrific Not Different But Interesting, about what people hoped to get from blogging. I said a voice and a sense of community. In the very short time I’ve been blogging, I think I may have found both. Bloggers really are lovely people. Thank you!

If you have some good news to share, I’d love to hear it, so please feel free to fill up the comments box. Come on. Spread the love.

Keep on Running


This wasn’t the blog post I planned to write tonight. Like many people worldwide, I spent most of last night (when I should have been thinking about my next blog post) gazing blankly at the TV in disbelief at the devastating news from Boston.

I first heard of the bombings on Twitter and periodically checked the hundreds of tweets expressing anger, condolences and admiration for the many acts of kindness that emerged from this appalling tragedy throughout the night. All acts of terrorism are horrifically irrational and unfeeling. But there is something especially senseless about yesterday’s atrocity. As David Baddiel tweeted shortly after the news broke: ‘Who the f*** blows up marathon runners?’ (And their supporters, we might add.) Who indeed?

I started running a month after Mr Boo was discharged from the NICU. I have never been, or even aspired to be, particularly fit and the last time I had a gym membership was early 2007. I had meant to try to get more active after Sissyboo was born, but the combination of a young and wonderfully distracting child, a commute, a job and a botched caesarian, put paid to that. But something changed after having Mr Boo. As he got strong enough to come home I started to worry whether I was strong enough to look after him and his sister. Physically and emotionally I was running on empty after six weeks in two NICUS. My children needed me to be healthy. Getting fit wasn’t about getting into pre-maternity clothes or looking a bit more like seemingly every other Surrey mummy when I picked up Sissyboo from nursery. It was a responsibility.

More than that, though, I needed to do something positive to counter the difficulties that we had faced as a family and the challenges, it was becoming all too horribly clear to us, Mr Boo would likely face for the rest of his life. I wanted to commemorate the determination he’d shown as he overcame oxygen dependence, terrible silent reflux and meningitis to get home to us. I needed to show how proud I was of him and I wanted to thank Bliss, the UK’s charity for babies born too soon, too small, or too sick, whose leaflets, website, phonelines and training of medical professionals had helped us (and continues to help us) more than I can say. If I could raise money, maybe I could help make a difference. Maybe other families might not have to go what we and so many others have gone through. I entered a half marathon. If I could push myself to the end of 13.1 miles, I figured, then maybe we could all get through anything. Maybe it would all be alright.

My first ‘run’ was a full 30 seconds before my first walking interval of a minute. Never has 30 seconds seemed so long. But over the weeks and months between June and Christmas, I managed gradually to build up my running times and mileage by sneaking out 2-3 times a week, usually after the children were in bed. I was still breastfeeding and I was sleep deprived. But it made me feel good, nonetheless. Then Mr Boo started having seizures and on Boxing Day was admitted to hospital where he was diagnosed with infantile spasms. I’ll write more about this devastating and thankfully relatively rare form of epilepsy in a future post. For now, it’s enough to know that we were admitted to hospital and discharged subject to daily blood pressure and blood sugar tests in the Children’s Assessment Unit to monitor Mr Boo while he was on a dose of steroids that adults with severe arthritis might be prescribed. On these visits to the germ factory, as I not so fondly call it, he contracted RSV and bronchiolitis. He was still fitting a week after treatment started and we were readmitted to hospital.

The steroids stopped the spasms a day later (please, please let them be gone for good…), but there followed another 5 long weeks of steroid treatment. These were the worst 5 weeks of my life. Apart from the constant anxiety caused by the fear of the spasms coming back, we had to deal with Mr Boo’s uncharacteristic irritability and incessant hunger (I lost 7lbs in 5 days while eating normally). Worst of all, though, was the acute insomnia. For the next month or so, Mr Boo was only able to sleep for a maximum of 3 hours A DAY in chunks of 50 minutes of less. His sleep is still not back to normal.

I nearly lost my mind. I have never felt so ill. I couldn’t run. I could barely stand. With 6 weeks to go, and a longest run of 6 miles some weeks behind me, I knew wouldn’t be able to do the half marathon.

But I did. Because I wanted to. No: because I had to. For me, for Mr Boo, for Bliss. (I clearly had lost my mind!) Over the next few weeks I ramped up the mileage (a little too quickly for comfort) and was forced to run less frequently than was sensible as Mr Boo’s steroid-suppressed immune system failed to battle a constant stream of illnesses.

I think I was the only runner fundraising for Bliss at the event. But the sea of brightly coloured vests I saw ahead of me, and sometimes passed, showed that the vast majority of the field was also running for worthy causes. It was clear that for most people racing that day, the 13.1 miles was the easy bit. This was the part of the journey that was manageable because unlike the illness, tragedy or grief that had inspired us to run in the first place, it was finite. The race would end.

When I crossed finished the line, I burst into a flood of tears. So did my partner, my Dad and sister. Sissyboo screamed like a wailing banshee and Mr Boo looked bemused. I hadn’t just run 13.1 miles (I still can’t believe I can say that). I had got through 11 of the most difficult months of my life. And now I knew that, no matter how hard it got, I could get through whatever else was thrown in our way.

For all the sadness that had brought people to the start line that day, the overwhelming emotions I felt during the race were hope and optimism. It was completely exhilirating to see how far people were prepared to push themselves, how much they wanted to help others through their fundraising and the words and expressions of encouragement that strangers shared as we willed each other to the finish line.

And this is yet one final reason why yesterday’s atrocity is so utterly senseless. Because what yesterday shows, is how resilient we are and how the most appalling tragedies only make us stronger.

Our optimism cannot be suppressed. Our determination knows no bounds.

On Being Lost

Today I took Mr Boo to his first two-hour settling in session at nursery. It shouldn’t have been too traumatic. Mr Boo is incredibly sociable and loves being with other people. Moreover, I know the nursery well as Sissyboo spent part of four days a week there for four and a half years. I’ve been in to see them several times about Mr Boo’s unique needs and have been repeatedly reassured. But I felt awful being without him. It wasn’t just that I felt guilty because I am going back to work in three weeks. It wasn’t just that I missed him, worried about how he’d be or that he would love his keyworker more than me. I felt all of these things with Sissyboo and none of my worst fears was realised. But this feeling was different. Awful.

I felt lost. Irretrievably lost. Like a child separated from its mum in the supermarket, I felt frightened, as if things would never be OK again, and I felt utterly paralysed by confusion and the disorientation of being separated from someone who I need as much as he needs me.

The only thing worse than the feeling itself was my intense recollection of having felt this way before. Having your baby lie in an incubator, dependent not on you as they should be, but on people you’ve never met, who have to teach you how to cuddle, bathe and change them so as not to disturb wires, cannulas and ventilators, is one of the most unsettling experiences I have endured. But it is nothing (and I mean NOTHING) to how profoundly, gut-wrenchingly wrong and unnatural it feels to leave your baby and go home. But that’s exactly what I did, the morning after Mr Boo was born, even though I could have stayed a day or two longer. I didn’t want to go, but I had my reasons. And one day I hope to forgive myself. But not today. Especially not today.

Birth: If Only I’d Known…

I have a confession to make: my name is Mrboosmum and I am a compulsive planner. I love lists, updated calendars, synchronised diaries and neatly filed documents. I also believe in and really enjoy doing research, in being prepared when doing anything in life, whether it’s buying a breast pump or a house, planning a shopping list or holiday. It’s a prerequisite of my professional life and makes me feel more in control at home. That’s invaluable to me and why I was interested to read about Aptaclub’s new ‘Preparing for Birth’ app to help mums through the last trimester of pregnancy. It’s a great idea and if Sissyboo and Mr Boo were to have a sibling (which they’re not, I hasten to add) I would have it downloaded before my 12-week scan.

Now for my second confession. While lists and research help to make me feel sane in the enjoyable chaos of life with two young children, my desire to plan, prepare and be in control simultaneously drives me (and no doubt my partner, the Grumposaur) mad. Since having Mr Boo, before my third trimester had even begun, my to do list often extends no further than ‘1) Make a to do list’, my filing is more an act of improvisation, shall we say, and my research consists of lots of open tabs on my smartphone for websites I read with bleary eyes during Mr Boo’s nightwakings.

Knowing that life would be like this before having my children wouldn’t have helped. To be frank, it would have horrified me. What I wish I’d known, what I wish I could go back and tell myself, is that part of good planning is knowing that you can’t plan for everything. If only I’d realised that accepting this would make me feel happier and, paradoxically, more in control.

You see neither of my babies had read my birth plans or diaries. I’ve recently written our birth stories for this blog so I won’t go into details here. Suffice it to say that my planned natural, minimal intervention delivery of Sissyboo ended in an emergency c-section that saved her life. Mr Boo, on the other hand, arrived naturally with no warning at 29 weeks, 10 weeks before the day he was due to be delivered by a planned Caesarian. I hadn’t packed my bag, bought any baby clothes or nappies, or got the car seat down from the loft. I was 65 miles from home, giving birth in a hospital I’d never set foot in, wearing a borrowed maternity dress, jewellery, make-up and low heels. It was purely by accident that I had my maternity notes with me. I vividly remember thinking during both labours, this isn’t what’s supposed to be happening. This is not what I had planned. It made two different, difficult situations worse. It was terrifying to feel so out of control.

Neither birth was what I wanted. And I would do anything to change them, particularly to go back in time and do something to make Mr Boo stay put, to have him grow up without the challenges he faces. But both deliveries and the following months would have been easier if I’d allowed myself to factor the unexpected into my plans. Having Mr Boo, in particular, has taught me that our reserves as parents and babies are bigger than we could ever imagine and we are stronger than we know.

It’s good to plan. It builds confidence and equips us to make the many decisions we parents take, consciously or not, multiple times every day. But we should also recognise that we can’t necessarily choose the birth we want or plan for our children’s lives to look and be a certain way. But we can choose to believe in ourselves and in the depths of strength and love that can pull us through even some of the hardest times in our lives.

Being prepared for the unprepared is not to be disorganised. It is to be liberated.

This post is Premmeditations’ entry into the Aptaclub’s ‘If Only I’d Known…’ Competition.