Tag Archives: NICU

2 Years Ago

 

Two years ago, I woke up with the by now all too familiar feeling of excitement mixed with dread. I felt queasy.

Two years ago we got ready to go to the hospital. Again.

Two years ago I longed for the days I wouldn’t have to hit a buzzer to be permitted through a door to see my little boy.

Two years ago I walked the usual walk from the car park to the hospital entrance.

Two years ago I looked up from the ground floor to the first and gazed at the window where the blue lights were on.

I hoped you were OK. I hoped nothing unexpected had happened overnight.

Two years ago Sissyboo held my hand just a little bit tighter.

My other hand was weighed down with things I hadn’t had to carry for a long time: a change bag and a car seat.

Two years ago we hit that bloody buzzer again. For the last time.

Two years ago you looked so big, though still so small.

Two years ago I crossed my fingers for the three hours it took for us to get the word.

That felt like ages, but we had waited so long already. Six whole weeks that felt like six long years. Because two years ago we learned that time can slow down to the point you feel it will never get moving again.

And then, two years ago and three hours later we finally got the nod.

As we walked to the door I kept waiting for someone to tell us it was a mistake. That they had changed their mind.

But they didn’t.

Two years ago you weighed the magic five pounds and had reached the equally magic 35 weeks gestation.

So two years ago our life was rebooted.

Two years ago we became the family of four we had longed to be.

Two years ago, Boo, you came home. Happy homecoming, gorgeous boy. We are so pleased you made it back to us. We will never be separated again.

 

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The Cost of a Premature Baby

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The cost of having a premature baby is substantial. First, there’s the cost incurred by the NHS for life-saving medical care. Then there’s the emotional cost to parents. This is hard to quantify. All I can say is that it is hefty. Life-alteringly hefty. My blog is in part an attempt to explain just how emotionally costly it is, even though I know that the pay-off is huge.

But there are other costs, too. More tangible, grubby little ones. And they can put an extraordinary pressure on you during what can be one the most difficult times of your life.

This was our situation…

Nearly two years ago I went into labour without warning, at work, 11 weeks early, 65 miles from home.

I was given a choice of which hospital I wanted to go to. Fortunately, despite my fear and ignorance of prematurity and local geography, I picked the one with a level 3 NICU (an acronym I didn’t even know at the time).

I have nothing bad to say about the hospital, where he stayed for 2 weeks before being well enough to transfer to another 10 minutes from home for the next 4 weeks. But the costs of our stay (a relatively short one considering how very premature Boo was and the complications – meningitis, brain bleeds – that ensued) were extraordinary.

With a heavy heart, and convinced it was the wrong thing to do (but there was no right option, I now see), I was discharged from the hospital the morning after giving birth to Boo, despite being considered twice for a blood transfusion.

Why did I do it? Well, as I’ve said before, I couldn’t help Boo and The Grumposaur, and more importantly Sissyboo, then only four, really needed me and asked me to come home. They were scared. Their world had been turned upside down. There wasn’t anywhere practical or affordable all of us could stay in or near the hospital.

To complicate matters further, my partner is self-employed and was about to embark on his busiest work project of the year. He had worked on it for 11 months. It would take him away for nearly 2 weeks. He had to work. It was his biggest pay cheque of the year. Self-employed fathers don’t get paternity leave, although that would only have seen us through a third of our NICU stay anyway. If self-employed people don’t work, they don’t get paid. And we needed money more than ever.

First, I had to buy a breast pump, so I could supplement pumping  done on the NICU and build up a supply of breast milk for Boo that everyone told me was vital to his survival and development. And it had to be a good (that is, expensive) pump as my body (still in shock) wasn’t really ready to do this. The hospital had none to loan out. They had three broken ones on the unit that hadn’t been repaired on the grounds of cost. £120 had to be spent.

Every day, often on my own, sleep deprived, driving through tears, I drove a round trip of 110 miles to see my little boy. One day, when I feared he might die, I did it twice. The fuel costs were astronomical. Hundreds of pounds in two weeks, despite me having an economical, sensible car. In the first three days, I spent £60 in hospital parking charges before a NICU nurse told me we could get a discounted weekly permit for £15, although sometimes the men who dished them out we’re reluctant to do so as people tried to work the system, so I should ‘look stressed’ (not hard) and get them to phone the NICU if they contested it.

And then there were food costs. The hospital canteen food was OK, although I would have happily not eaten it. But I needed calories for milk supply and to help me stay awake to be safe on the roads. I tried only to have one meal and a coffee in the canteen every day, but it soon mounted up in price. Perhaps I should have made a packed lunch, I hear you say. But this was no picnic I was headed for. I could barely string a sentence together or see in my peripheral vision. I was just surviving. The fridge was bare (Sissyboo was getting two meals a day at nursery or eating in the canteen with me when she wasn’t). I couldn’t have summoned the will to make a packed lunch if I’d tried.

The costs reduced significantly when we got closer to home and parking became free (one of the few perks for NICU parents of the hospital we ended up in – I have since sunk a small fortune in one to three weekly visits there since discharge). But this NICU  didn’t provide nappies or cotton wool for prem babies as the other had and seemed cross I hadn’t brought any with me after he was transferred (with only a couple of hours; notice) arriving at eight in the evening. I sobbed when I realised what a rubbish Mum they thought I was and went out to buy nappies at 6:00 the next morning. Preemie nappies are, of course, very expensive. Only one shop, 8 miles from us, sells them. I live in a town with several chemists and two supermarkets.

I can see that some of these costs are unavoidable, but meeting them can be difficult for the parents and families of babies born too soon or sick. Meeting them when you are in such a vulnerable state makes a difficult situation worse. Having to let your partner work and each go through this intense experience separately is impossible for both parties. It’s a miracle we are still speaking to each other, to be honest.

But we are and we met the costs. It was hard, but what choice did we have? Others are not so fortunate.

This is why I am supporting Bliss’s Thunderclap It’s Not a Game Campaign, which is campaigning for better provision for the families of premature and sick babies to help them through this difficult time. It is easy to give your support to this campaign, by visiting their Thunderclap page and using social media to affirm your support.

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How far Do you Have to Come to Go Back?

When I got back from our family holiday I was dreading the backlog of  ‘To the Parents of Mr Boo’ letters that would be on the doormat. Any parent of a medically fragile or disabled child will know what I mean. The endless appointments that take so much juggling to attend, the dashed hopes when it’s not the appointment you’ve been waiting for for months and really need. The summaries of appointments that coldly reduce your child to a set of terms, conditions and prognoses. There were plenty of those, but the letter that really floored me was slightly different.
I knew what it was before I opened it. You see they’d addressed it to Boo but given him my surname (The Grumposaur and I are not married). It’s the name he went by in hospital even though we begged them (for the sake of my struggling-to-bond partner) to give him his father’s name, the one he was legally registered in long before he came home from the hospital.
Yes: this letter was from his NICU. And this meant one thing: an invitation to its annual reunion. It’s not in the NICU – it’s at a local school – and it’s a chance to reconnect with people and do some modest fundraising via tombolas and raffles.
When last year’s invitation came we had only been out of the NICU for a couple of months. Too soon, I thought. Next year, I thought. Well now it is next year and it’s still too soon. I can’t go back. Not even to a school where NICU staff and its wee graduates will be. I can’t do it.
Why? Please don’t think it’s that I’m not grateful to the staff there. I am. But in the four weeks we were there I didn’t strike up the same kind of relationships I did in the first NICU he was in. And as for reconnecting with other parents and children? Well, that assumes we connected in the first place. Sadly, we didn’t.
I read lots of premature baby blogs and am so touched and made a little envious (if I’m honest) when reading about NICU friendships. I didn’t make any. You see our local NICU, to which Boo was transferred at 32 weeks was not a high-level NICU. When he was moved, he went into intensive care (a blacked-out and totally depressing room). There were two other babies in it. They both were out in a day or two. Most seriously ill or very premature babies born there were transferred up to London or to other hospitals like the one Boo was born in because I work so far from home. As a result, Boo was always one of the most acute cases there.
Most babies who came in were in for a few days only. Their parents were no less worried, they were often extremely and visibly upset, but when they poured out stories while waiting to be discharged, about how they’d just had the worst 48 hours of their life and then found out Boo had been there for 5 weeks already, they ceased to be able to talk to me. It wasn’t a competition. But I got the feeling most parents thought we trumped them in the misery stakes. I wanted to hear their stories because I wanted people to talk to, because I wanted people to listen to me. But the minute people knew about Boo’s prematurity, the brain bleeds, the meningitis, or saw people running to administer facial oxygen after a reflux-related desat they stopped talking to me.
That NICU was one of the loneliest places I’ve ever experienced. I was there for hours every day but I never got used to it. All I wanted was for him to get out. And now we are, and grateful as I am for all they did for us, I can’t go back. I can’t be one of the parents of the children who didn’t get away with it. All the 27-weekers and just fine now little folks people tell me about in conversation all the time to give me hope about Boo.
I am proud of Boo and all he has achieved and genuinely happy for all those babies that got away with it. But I don’t want to be reunited with the pain and the loneliness. I can’t go back. I wish I was strong enough that I could, but I can’t.
We’ve all come such a long way in the last 18 months. Just not far enough it seems. Maybe next year. Maybe…

A Note to NICU me

Boo is teething. It’s awful. He is dribbling through about a vest an hour and waking himself up many times in the night choking on the copious amounts of saliva he’s producing. He’s biting everything in sight (including me), has a fever (I know lots of people say that’s not a teething sign and it never was with Sissyboo, but he has had a temperature of 39 degrees every time one of his 9 teeth has come through so far) and he won’t eat (most unlike him). One tooth popped through this morning; the gum above it looks fit to burst. So hopefully we’re now on the home straight for this bout.

 
It’s made for a pretty difficult couple of days, especially today as I had the kids on my own while The Grumposaur was away. As I sit here hoping Boo’s settling down for the night, I feel completely frazzled from four hours’ sleep and lots of screaming in the day. But then I remember those days in the NICU and SCBU when I would have given a limb and a kidney for these kinds of ‘problems’, annoying and draining though they are.
 
It’s spurred me on to think about what I would go back and tell NICU me if I could. Honestly, I’d need a few hours to do the job properly and I would probably run me a nice bath and give me a bottle of wine to drink while I gave myself the benefit of my considerable and immodest wisdom. But in essence, I would tell myself just a few things…
 
1) It will get better. The pain, the guilt, the trauma never entirely go away and these devils will rear their ugly little heads when you least expect it, but things will never be as raw again. You will get home. You will feel happier than you ever thought possible.
 
2) You are not a pain in the arse for asking questions or phoning the NICU in the middle of the night if you want to. (I only did the latter once on the night we thought Boo might die but I wanted to phone every night around 2am and stupidly felt I shouldn’t trouble the unit.) It’s your right to be concerned about your child’s welfare and to make consultants answer questions they want to skirt. Some may think you’re a pest, but most you won’t ever see again so who cares, and some will even respect you for it. 
 
3) Trust your instincts. You might not always be right but you owe it to yourself and to your child to follow through on your feelings. You will be right when it counts (like when they threaten to re-ventilate Boo and you just know it’s a gastric not a lung problem). It took a lot of guts to stand your ground on this but you did. He wasn’t re-ventilated. You should have felt able to speak up more often.
 
4) Don’t give in to the pressures of others to share more than you want to or to call every day if you don’t feel able to. It’s a cliche to say there are no rule books for these situations, but you need to set rules for how people can expect you to interact with them during this time. You will answer every text, phone call and email as if you were at work. You’re not and it will make everything harder for you. You could have made life easier for yourself. People would have got it. And if they didn’t, they probably weren’t worrying about.
 
5) You are stronger than you ever knew you could be. You will not be part of one of the happily ever after NICU stories you cling to. You know (almost instinctively) months before it becomes all too apparent that this will be the case. Life will be hard and never the same again. But you know what? You will deal with it, not just because you have to but because your new normal, your newly configured, beautiful, maddening and hilarious family will motivate you to do things you never thought you would and to be a better person. You won’t always get it right, of course, but no one can ever accuse you of not trying. And if they do, don’t ever bother to speak to them again.
 
6) You will smile and laugh every day after you leave the NICU even on a few days the horrors of which can only be described by the worst kind of expletives. And you won’t smile and laugh once or twice a day. You will do it a lot.
 
7) You are not alone. No one’s situation is exactly like yours, of course, but you will learn to reach out to others in the real and virtual world in a way you never quite could but should have tried harder to do in the NICU. You will start a blog. And the people you meet through that blog, in similar but importantly different ways from the many friends who have buoyed you up for the last 16 months, will sustain you, help, advise and be kind to you in ways that will make anything good and worth having seem possible.
 
Things will be OK, you know. One day you will be seriously annoyed by a couple of nights broken sleep because your son is teething. And then you’ll remember how far you’ve all come.

Truths my Daughter Taught Me

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Being the parent of a premature baby or one born with complex health needs can be a scarily infantilising process. One of the many things I looked forward to when pregnant with Mr Boo was not feeling as bewildered as I did with his sister. OK all children are different but their needs are pretty similar when it comes down to it.

Not so, I found. There were these whole other worlds of prematurity and special needs parenting I barely knew about. The folks there spoke completely different, specialist languages and were too busy to tell you where to buy a phrase book. You had to listen hard, intuit as much as possible and trust that they knew what they were doing. It felt like one long (oh, so long) first day at school, where you missed the security of life until that point and feared what stretched out in front of you. There were lots of rules to learn quickly and that lots of people around you already knew but wouldn’t tell you because they’d forgotten there was a time they didn’t know them. There was no playtime at NICU school and no gold stars for good behaviour. And just like school, the minute you’d finally got your head around something new, your teacher came along and told you about the next thing, and the one after that. And you never thought the holidays would ever come.

I hated being in this position. In my work life I’m the one who has to stand at the front of the room and impart information like I know what I’m talking about. I’m supposed to know the answers and people trust I have them even when I don’t. Not being this person was totally disorienting.

More recently I’ve been feeling child-like in a totally  different and much more pleasant way. I’ve similarly realised I’ve had lots to learn. But don’t you find your attitude to learning depends on who’s the teacher? And I have the best: my daughter.

While I was pregnant I worried a lot about the impact of a sibling on Sissyboo. She’s had Mummy and Daddy all to herself for many years (she’d be nearly 5 when he was born) and while we thought she was good at sharing and thinking about others, we also knew that behaviour on play dates isn’t a reliable indicator of how a child will be with a little brother or sister. It was going to be hard on her, we knew that. We had no idea how hard. No idea that her Mum was going to go to work one day and not come back because she was in hospital with her little brother who wasn’t supposed to be born for another 11 weeks. No idea that he would spend weeks in a box looking purple and alien-like without eyelashes or fingernails. That it would takes weeks to get him home. That when we did get him home we couldn’t go out much for fear he’d get sick from the world of germs. That he would, in fact, get sick and start doing funny hiccups or fits as she came to know them. That he would keep going back to hospital. That she would learn to do physio with him. That he wouldn’t grow up as she had done. That his birth would affect him and her for the rest of heir lives.

I don’t want to pretend that Sissyboo’s response to this has all been sweetness and light. She struggles, just as we all do. In the past year we have seen her have tantrums the like of which she has never exhibited before. She periodically stops sleeping for days at a time and wets herself despite having been dry since the age of two and a half. We worry about her constantly and want to support her as much as we can. She deserves better. I’ll return to her needs and this difficult question of sibling support in another post.

For now, though, I want to tell you about the amazing things. About how incredible my daughter is with her little brother. About how much she’s taught me and what an astonishingly kind and compassionate girl she has grown into.

Here are just a few of the things she’s I’ve learned:

1) Acceptance is child’s play: I’ve blogged a bit about this already but it bears repeating, if only to remind me of one of the most important lessons she’s taught me. Whereas I, for a long time, resisted the world we’d entered after having Mr Boo, Sissyboo quietly internalised it. When she plays mums and dads babies are born ‘way too early [shake of the head], silly things’ and stay in the hospital for weeks before coming home. All babies in this imaginative world have physio and take medicine. And if they don’t, they’re ‘a bit odd’. Older children routinely get ill and get better and do ‘amazing’ things like practise their sitting or swallow food without choking. Her sense of normality has been utterly recalibrated as if she knows normality is the most misleading word in the English language.

2) Acceptance is not the same as giving in: My main problem with accepting cerebral palsy, developmental problems and epilepsy (now largely overcome because of my daughter) was my mistaking accepting for acquiescence. And I am not prepared, on Boo’s behalf, to give in to these conditions. But what Sissyboo helped me to realise was that acceptance is not the same as giving in. We can accept but still be ambitious for Mr Boo. I think I told you before she calls ‘disabilities’ ‘abilities’ because the latter makes more sense to her given all that disabled people can do. Sure, Sissyboo knows other children her brother’s age (and much older than him) can do things he can’t, but she never questions that he will learn these things in time. Between her and me he has the most enthusiastic cheerleading team as he practises his physio and works on his Portage targets. ‘He will walk one, Mummy, I know it.’ When she says it, I almost believe her. If it was down to her and his willpower alone, it’d be a done deal.

3) Laughter is the best medicine: Mr Boo has a brilliant, throaty laugh that could melt the coldest heart. And he laughs a lot. But he never laughs for anyone like he laughs for his sister. He can be miserable as anything and she can make him beam. He can get frustrated at his inability to grab a toy or move forward on his tummy and she can turn his tears to chuckles in seconds and give him the guts to have another go. The NHS should hire her out. She’s the best therapist he has.

4) Love can bring about change. People say the silliest and most offensive things to families of children with special needs, and we’ve had an unfortunate run of these in the past few days. But if Sissyboo has her way, things will be different. Her compassion and a wisdom way beyond her years are apparent within seconds of talking to her about her brother. When I took Boo into her school, at her teacher’s request to talk about babies, I was nervous. Her teacher said the children were unlikely to want to know about his prematurity; they would just ask Sissyboo and I questions about looking after little people. The first few questions went from the banal (‘what’s his favourite pizza topping?’) to the downright awkward (‘what’s the difference between a girl and a boy baby?’) Then they got sticky: ‘my little brother’s older than yours and he’s crawling. Why isn’t yours?’ The teacher and I looked at each other wondering which of us should step in to protect Sissyboo by answering for her. But before we had a chance she stepped right up and said with unusual confidence: ‘My brother was born VERY early and has been in LOTS of hospitals. And he’s AMAAAZING. He can’t crawl yet but babies do things at different times and it’s hard for him. He will do it one day. And we need to be kind and help him. He’s the best brother in the world.’ My heart started to thump and tears welled up in my eyes. Did I mention she’s 5?

Life”s not all a bowl of cherries in Booland and Sissyboo needs and will in the future need support of a kind I never anticipated because of her brother’s disabilities. This makes me very sad. But however much I worry about that, I never worry about the relationship between my kids, about how much she loves him and how far she will go to be his advocate.

The other day as we walked home from school she told me that one of her classmates had fallen off the climbing frame and her friend’s big sister was in floods of tears as she watched her little sis having icepacks and plasters put on. Sissyboo was puzzled by the big sister’s reaction and I was puzzled by my daughter’s uncharacteristic lack of empathy:

‘She’ll have been upset because she thought her sister was hurt,’ I said. ‘You would be the same if something happened to Mr Boo, wouldn’t you?’

‘No,’ she emphatically replied. I was surprised and it must have showed in my expression

‘I wouldn’t cry because I’ll always be there to catch Mr Boo. He’ll never fall off anything. I won’t let it happen.’

You will fall, Boo. And, despite what she thinks, she might not always get there in time to break your fall. But she’s got your back Boo. Be in no doubt of that.

You are one lucky fella. And I’m one heck of a lucky mum.

Home

As the parent of any premature baby will tell you, anniversaries can be tough. We had a lovely party on Mr Boo’s birthday last month, but I found the run-up to the big day incredibly emotional as I thought about all that he’d come through and how far we all have to go. The Grumposaur found the day even harder and spent most of it away from the party displacing anxiety onto all manner of petty concerns. He fooled no one. Not even himself. 

Then there were the one-year-ons of a whole host of other days I wish we hadn’t had to live through: the anniversary of the day Mr Boo got sick; the day we found out about the brain bleeds; the day people started floating about words like cerebral palsy, developmental delay and so forth. You don’t have to be Brain of Britain to work out why I started writing this blog the week he turned one.

 
But today is a truly happy anniversary and nothing (not even spending 6 hours in hospital yesterday for a non-blanching rash on Mr Boo’s legs – great timing Boo!) will stop me enjoying from this one. 
 
A year ago today Mr Boo left the neonatal unit. He came home 6 weeks after he was born. He was 35 weeks gestation and weighed a little over the magic 5 lbs.
 
Of course every premature baby’s path through the NICU is different; different challenges are met and overcome, different questions are posed. But whatever these challenges are there are two questions every NICU parent asks: Will my baby be OK? When will they come home?
 
I asked the first question quite a lot. But I only asked the second question once. After I’d received the standard answer – we don’t know, but hopefully your due date plus or minus two weeks – I didn’t ask again. I guess I didn’t want to hear the answer or jinx things. Or maybe I just realised what an unfair question it was. They didn’t know. I just had to bide my time. 
 
But goodness neonatal units do the weirdest thing to your sense of time. Think complicated episode of Dr Who model of time and multiply it by 25. You can spend hours (and I mean hours) in the NICU just staring at your baby and it will feel like minutes. One day after 3 hours of looking at Mr Boo and only infrequently lifting my head to pass pleasantries with the nurses I was politely advised to leave and get a coffee and go to the loo. I honestly thought I’d been sat there for 10 minutes. On other occasions, a day will feel like a week, or the 2 hours waiting for blood results will feel like a day. Six weeks is not a long time to be in the NICU. We were very lucky. I swear it felt like 4-6 months, though.
 
But the last 5 days passed in what felt like 5 minutes. One day it was all doom and gloom, he’s still desatting badly with the reflux, you may be near the door now but you are a long way from home… The next day he stopped desatting and a new consultant came on who asked me if we were set up for him coming home. I thought he was joking. Even as they made sure I remembered how to bath a baby, draw up and give meds through a syringe and do CPR I couldn’t quite believe we were headed home. But we were.
 
On May 19 2012 I packed a change bag for Mr Boo for the first time ever. I never thought this could be an exciting activity. We put Sissyboo’s old car seat in the car and drove all together to the hospital. 
 
The unit was quiet that day and Mr Boo was alone in his room, accompanied only by a crackling radio playing a bad local station (they could at least have out on Pomp and Circumstance or something more suitable to the occasion). All I wanted, though, was silence. A world without beeping monitors and artificial light. A world where I didn’t feel I needed permission to look after my son, where my relationship with him wouldn’t be on show. I just wanted to us to be a family. Together.
 
Of course, it is worrying to bring home a new baby, especially one born in such difficult circumstances and with ongoing problems. But I’ve said this before and I’ll say this again: if you are in the NICU now know that whatever life throws at you subsequently it will be so much easier to deal with than when you are separated. 
 
Simple pleasures are so life-enhancing. At home you can cuddle your baby in bed (or your baby and his big sister in our case – thank goodness for king-size beds). You can get in the bath with them. You can just be. We were all broken by our experience of the NICU but are just about as together as a family could ever be now.
 
Thank you, Mr Boo. Thank you for being strong, for being a tough little cookie. Thank you for being the best son and little brother we could ever have hoped for. And mostly, thank you for coming home and for the happiest day of my life.

How Kangaroos became my Favourite Animals

I love animals. I grew up with a menagerie of dogs, budgies, hamsters and rabbits. I volunteered to help at animal sanctuaries as a teenager and have been a vegetarian for 25 years. A few days ago Sissyboo (desperate for a dog we don’t have the time or lifestyle to look after properly) asked her evil no-you-can’t-have-a-dog Mummy what my favourite animal was. She expected me to say dogs and guilt me into letting her have one. And for most of the last 36 years ‘dogs’  would have been my answer. But since last year, I’ve had a new one: kangaroos. It surpised her, but probably won’t surprise many of you.

Today is International Kangaroo Care Awareness Day. I had never heard of kangaroo care before having Mr Boo. In my experience it’s one of the few nice things you learn about as the parent of a premature baby. In our first NICU I was given a leaflet by Bliss which gave lots of great advice on the apparently miraculous effect of skin-to-skin cuddles (better monitor readings and saturation levels; the promotion of intense bonding between parent and baby). I struggled to believe it or understand how a baby on a ventilator could be safely removed from their plastic box, but was enthusiatic to try, to try to hold my baby.

When Mr Boo was a few days old, we were all set to give this a go and I was so excited as I drove to see him that morning. But when I got there I found he was ill with suspected meningitis. He was far too ill to be removed from the incubator. Then, almost as soon as he recovered, he was whisked to a NICU nearer home (he was born 65 miles from where we live). Sadly, our local hospital did not actively promote kangaroo care. I asked about it and just kept getting a response of ‘soon’. Mr Boo had started to desaturate badly after feeds (it turned out to be severe silent reflux), they thought it wasn’t a good idea. I agreed it probably wasn’t, but my heart was heavy.

And then one day, an experienced NICU nurse called Sally who’d been on leave for the previous week came on duty and talked to me about the gruelling expressing schedule I was on (every 3 hours all through the day). She asked me if I wanted to breastfeed Mr Boo. I laughed and then realised she was being serious. And then she asked me how kangaroo care was going. She was appalled when I said I had been told to wait. She said there was no reason to. Mr Boo was on Optiflow but he would be fine out of the incubator for short periods and his sats might just improve, she told me. She said if I wanted to try to breastfeed, although it might not work of course, I should start kangaroo care now.

All those weeks of missed cuddles. I had to make up for them.

I did!

At just 32 weeks gestation, 3 weeks after he was born, I had my first skin-to-skin cuddle with Mr Boo, thanks to Sally. It was magical. He didn’t desat. In fact, his sats improved immeasurably just as she’d predicted. Not only that, but to our great surprise he started to root around and attempted in his tired, 32-week way to breastfeed. ‘They’re not supposed to have the suck, breathe, suck reflex at this gestation,’ Sally said. ‘But these babies don’t read the manuals or they wouldn’t here in the first place.’

3 weeks later, we left the NICU with an exclusively breastfed baby. He still was 10 months later, I only gave up so I could go back to work (and drink more coffee!). I never expected to breastfeed Mr Boo (I managed just 6 weeks with his healthy, term sister) and feel far too much pressure is placed on women to breastfeed whether their babies are prem or not. But kangaroo cuddles created a bond between Mr Boo and I, regardless of the feeding, that is stronger than I could have imagined.

Sadly, I don’t have any pictures of me doing kangaroo care. The Grumposaur was away with work for 7 days the week I started and came back with a flu that left him unable to see Mr Boo for another 2 weeks. So no one was there to take pics of us, but the memories will never fade. And Mr Boo’s favourite way to sleep even now at 13 months is still his kangaroo cuddle.

If you’ve read this blog before, you’ll know I blog anonymously (no one who knows me knows I write it) and I don’t usually post pictures. But this is a very important day, so I’m making an exception. Here is Mr Boo a couple of weeks after coming home and 3 before his due date.

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Kangaroo cuddles don’t have to stop in the NICU! I hope you have some with your babies today wherever you are.

Further information:

If you would like more information about the benefits of kangaroo care to parents and babies, please visit: Best Beginnings: www.bestbeginnings.org.uk or Bliss: www.bliss.org.uk

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……?

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.