The Big Detethering Surgery

It’s been so long since I updated here. Truthfully Spinabifida kicked my arse a bit and I just couldn’t bring myself to write about it or even talk about it anymore. I didn’t want our lives shadowed by it, I didn’t want Clark to be defined by it, I had just bloody had enough of it.

 
I had grand plans of documenting his detethering surgery, I thought it would give me something to do in the hospital and I figured it would help anyone else faced with the same thing. Then his surgery day arrived and I got so furious with Spinabifida that I promptly left all SB groups I was a member of and decided I never wanted to write about it again. 
 
I dumped Spinabifidas sorry arse. 
 
So if that was my painful break-up this is my – lets see if we can work it out couples counselling. I need to learn to accept and see the good in it otherwise I’m just gonna be a miserable, mardy cow. 
 
I’m gonna go back and revisit his surgery, I know how scary and unknown it was to us so if this can help someone going through the same thing then that’s gotta be good right…
 
(When a baby is born with SB in the UK the general opinion is not to operate unless they start showing symptoms. Well as you can read here, Clark did start showing symptoms so they decided to operate as soon as possible.)
Day One (The Worst Day)

We arrived at the hospital at 7.00am and crammed into a small corridor with several other terrified looking parents. Anxiety broken momentarily when I farted (loudly) and blamed the baby. Then we waited and waited and waited, tried desperately to distract a very hungry Clark and also each other. I think it was about 10.30am when we got taken down for his anaesthetic. This bit still makes my heart hurt, Clark sat on Jases lap whilst they administered gas to him through a mask. I remember trying so hard not to cry, in this clinical room surrounded by nurses and doctors who had the most important job to do, but there was my baby sitting on his Daddies lap crying whilst being put to sleep and all I wanted to do was snatch him up and run faraway. Instead I burst into tears and a nice nurse got me a tissue and Clark got drowsy and they laid him down and we were told we could kiss him goodbye.

I lost it outside, big heavy, knee buckling sobs while jase held me up. We walked to the chapel in Great Ormond Street, I figured it would be peaceful and it was but then my big heaving snotty sobs kind of broke the peace so we left.

Eight hours we had to wait, an absolutely surreal eight hours. One minute we were walking round the British Museum like any other carefree couple and the next minute I’d crack and breakdown and cry for my baby and we’d venture on to find a new distraction. We walked, we sat in parks, we walked some more. Eventually we settled in at the hospital to be close by when they called us.

I shook when they did, physically shook all the way down to recovery. Oh god what a joy that was, seeing him for the first time. In this chaotic loud recovery room, he was covered in wires and tubes and was drowsy and disorientated and trying to get up and in all that madness they let me nurse him. I’ve never been more scared of holding him in all my life, he’d just had major spinal surgery. What if I hurt him? It was like nursing a fragile doll but we nursed and he grew calm and I found the tiniest bit of peace in weeks.

First Nursing after surgery

First Nursing after surgery

His surgeon came to see us, to reassure us it had gone well and he had done everything he hoped to do. I can’t really put into words how i feel about Mr Thompson, I mean can you imagine preforming 8 hour surgery on a 14 month old. He is the quietist of heroes, a tall gentle man, who took care of my baby and to say I’m grateful to him would be the biggest understatement.

I always imagined the first night after surgery to be a quiet one, I joked it would be the first full nights sleep I would have had in over a year. I figured he’d be so knocked out that he wouldn’t stir. I clearly forgot what a spirited feisty little thing our clark is. We arrived back at the ward at 6pm and he eventually slept at 3am. It was the longest hardest night of our lives and it’s probably only now I can look back and not be completely freaked out. He was scared, disorientated and furious. He managed to rip out two catheters, nearly ripped his canular out too. They let Jase stay all night because we were tag teaming between me nursing him and Jase rocking him as it was the only time he’d be calm. All the while terrified we’d hurt his back, terrified in all his struggles that he’d hurt his back. He had something like twenty doses of morphine but it was the paracetamol at 3am that finally knocked our little fire monkey out.

Day Two (The Calm After The Storm)
Day two was practically a holiday compared to the rest of this journey, our little puffy boy was awake and eating like a horse. Talking of eating Great Ormond Street is on the door step of this amazing little street with these amazing little eateries and Jase would bring in the best food everyday for us both. Proper nourishing our souls. He was calm and still all day, watched a lot of Peppa Pig, didn’t try to rip any tubes out and laid flat for the duration. I can’t imagine having his surgery done anywhere else. Every single member of staff at GOSH were angels. They calmed us, reassured us, made us laugh and loved and took care of us all. All this for free too, say what you wan’t about our NHS but if it’s something shitty then you’re wrong. She may not be perfect but she’s still bloody wonderful. We’re very lucky.
Day Three and Four (Visitors and giggles)
Clark went from strength to strength, eating all the good food, lovely long naps, watching telly and even a bit of playing in bed and he laughed for the first time in what felt like forever. All while resting and laying flat and making no fuss (Unless any staff touched him, then he’d go fucking ape shit) Friends came to see us, I escaped the hospital to have coffee on amazing street. We were reunited with our big brave boys who’d been so good while staying with their Grandparents. Physio came by we could sit him up. He was doing absolutely brilliantly.
Day Five (We’re Breaking Out)
8 hour surgery. Going home on day five! Slightly terrified at the prospect of having to change his dressing by ourselves also the responsibility of keeping it clean was huge but fuck it WE’RE GOING HOME. I was a mute on the journey back, I remember being so scared the car journey would hurt his back, I just sat kind of numb taking the whole week in and that’s pretty much how I was for a few weeks following.
I'm going home bitches YO!

I’m going home bitches YO!

The Aftermath (Plus Survival Tips)

I can’t sugar coat it, it was an ordeal, seeing your baby in pain and not being able to take that pain away is the worst feeling ever. We got through it though, after day one everything was easier. Every procedure since the operation has seemed like a walk in the park really.

His wound wasn’t nearly as scary as I’d imagined. The taking care of it was a bit terrifying though. Obviously the site of the stitches being so close to his nappy region meant there was a huge risk of infection. We were told at his check up that we’d done amazingly well at keeping it clean and I remember me and Jase high fiving like a couple of dorks.  Have someone to help in those first few days after being discharged, nappy changing became a two man military job in our house.

Before and after (stitches on day six)

Before and after (stitches on day six)

Here are some things that might also help – Before the surgery make sure you ask the surgeon all the questions you need to. I think some of ours were – How long will it take? Will I be able to breastfeed him straight away? How long will he be in for? Pack pjs not babygrows as it’s easier access to the wound. If the hospital is as warm as GOSH they’ll spend the entire time just in a nappy anyway. iPads or similar devices are great to take to keep baby/toddler/child amused while they have to lay down. Pack their favourite blanket and teddy. Pack some comfy lounge clothes for yourself, I also took books and cross stitch, to be honest I couldn’t concentrate on either while the op was happening but I did do some reading during the rest of the week.

Most importantly make sure you’re with someone you love and someone who will hold you up through it. Jase was my rock, he didn’t fall apart, he stopped me going completely bonkers, he was my light, my love and bought me amazing food on demand (I bloody love you baby)

If you’re reading this and about to go through the same thing, nothing that anyone says will make you worry less or make you feel better. I can tell you though that you’ll get through it, you might not think you will but you will. Time will pass achingly slowly and incredibly fast all at once. You’ll feel and experience every emotion possible and in some ways it will be even worse than you imagined but in others so much better.

Lastly, I went and spoke to a counsellor, it felt weird being that I am one but then I remembered I am one because I truly believe in how powerful and helpful talking to someone impartial and empathic can be and it really was.

………………………………………………………………………………………………………………………………………………………………………………..

Well that was quite cathartic.

Spinabifida you’ve been a right royal arse hole lately, and to be honest I’m not sure I’ll ever really accept you in our lives but maybe, just maybe I will learn to live along side you.

What’s in a walk?

The last time I wrote about Clarks Spina Bifida he was fine and dandy and symptom free. At 9 months he was sitting up, crawling and had movement in both his legs. Then about six weeks ago we noticed a sudden deterioration in his left leg and foot. He would pull up to stand and support himself on his right foot but his left he rolled over and couldn’t/can’t weight bare on it.

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So we took a trip to the physio who told us it appears to be nerve damage. He has hardly any movement below the knee, zero movement in his foot and toes and doesn’t seem to have any sensation in it either.

We took him back to his Neuro Surgeon at Great Ormond Street who confirmed everything she had said. It’s obvious his spine has now tethered and we’re on a waiting list for an emergency MRI then detethering surgery as soon as possible.

So what became clear during these appointments is that nothing is clear! It’s unlikely he’ll regain movement in that leg but as for if he’ll walk independently or not no one knows yet.

Now something I read a lot from new and expecting parents of an SB baby is “Will my child have a normal life?”

Will my child have a normal life? It’s an impossible question to answer because having Spina Bifida is just a tiny part of someones life and who they are.

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Some people in wheelchairs have an awful life. Some people who walk have an awful life. Some people in wheelchairs have an amazing life and some people who walk have an amazing life. You get where I’m going with this right?

To hear your child might not walk can seem heart breaking. When we first heard the word wheelchair mentioned I got so overwhelmed that I did a massive cry. Then I got home and I rationalised it. Clark will get around somehow, whether he uses his legs or a brace or crutches or a wheelchair only time will tell but he will get around.

For anyone going through this, for anyone with a diagnosis that is terrified. Don’t be. Your child can have an amazing, fulfilled, rich life even if they are differently-abled. Now don’t get me wrong parts of being a Mum to a child with special needs is gut wrenchingly awful – the MRIs, the sedation, the thought of sending him off for spinal surgery makes me cry every time I think of it (so I just don’t, serves no purpose to worry about something that isn’t happening right now) but trust me when I say the joy outweighs the anxiety in a massive massive way.

His determination, his pure joy, his devious little grin when he managed to pull himself up onto the coffee table and touch my precious things. He’s just wonderful.

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The Spina Bifida? It’s the smallest part of who he is.

Will he have a normal life?

No definitely not.

He’s going to be absolutely extraordinary.

Dear Casper

There’s a space of about fifteen minutes between you coming out of school and Charlie coming out of school. You usually zoom off to play while I stand around talking. Friday I decided to go sit down and see what you get up to.

Sometimes you get a moment as a parent that just fills you with emotion all suddenly and Friday I had one. I watched you playing football, eager to be around the bigger kids, chasing the ball but not quite having the confidence to really engage with it. Just happy to be a part of the team. I wondered if you’d be embarrassed to see me sitting watching you but you grinned and waved at me and my heart melted a bit. Slowly even more kids joined the game, bigger more confident kids. You came and joined me, quite content to hang back and observe your peers. My little man, when did you grow up? When did you lose the chubby fingers and feet that looked like apples with toes.

I remember a few days after you were born I was standing in the bedroom rocking you and you looked up at me with such familiarity. I smiled down at you and said “We’ve been together before haven’t we?” It felt like old souls reuniting and Christ I hope you don’t read this as a teen there’ll be cries of “Muuum OMG you’re like so embarrassing” Sorry in advance sunshine.

I worry though Casp, as a Counsellor I’m horribly aware of the pains of middle child and as a Mum as much as I feel rubbish saying this I know you’ve lost me a teeny bit this year since your little brother came along.

I don’t get to play giants as much as I’d like, we’ve not had a good game of tickle test in months and we’ve only had a measly few Mummy Casper times in the last ten months too. Some nights it’s taken so long to settle your little brother that when I come to tuck you in you’re already asleep and I kiss your sleeping head and whisper Golden Slumbers to you and just hope you hear it in your dreams. OHMYGOD I’m an emotionally wreck over here now.

I also know we still have lovely times, sometimes we’ll make each other laugh over something so silly and we’ll laugh and laugh till we can’t stop and everyone else looks at us like we’ve lost the plot and then you’ll talk about it at bedtime every night for the rest of the week. Every morning at school we play spiders crawling up your back and you always win and I’m still not 100% sure you’re not a massive cheat. Nine times out of ten I do get to tuck you in and sing you golden slumbers and stroke your hand and listen to how you’re feeling and watch you do that strange head shaking thing you’ve always done before falling asleep. I hope all that’s enough for now until things settle more.

Thank you for loving on your little brother and playing with him and soothing him gently when he cries.  Thank you for not resenting him, for not trying to secretly kill or maim him and thank you for sharing me with minimal fuss.

I tried to tell you all this today but your six and you had way better things to do than listen to me waffle on. You did a little grin when I told you I loved you though so that’s nice and oh how I do love you.

Casper you are charming and cheeky in equal measures. You have the sweetest gentlest nature. You make me laugh every day. You’re doing brilliant at school and have a beautiful thirst for knowledge. Please don’t stop asking questions even if Mummy does say sometimes STOP ASKING SO MANY QUESTIONS. You’re so smart kiddo and sharp as a tack. You’re kind and caring, you stood quietly outside the bathroom whilst I yacked the world up the other day then when I was done you asked if I was ok and you got me some tissue.

I couldn’t be prouder of you baby boy, I hope you know how complete and utterly loved you are.

Right up to the moon.

And back xx

Casper

Nine months on

Sir Boobsalot

Sir Boobsalot

From nine days old to nine months old and still a massive boob monster.

Feel like I need to start this post by pointing out that however you choose to parent is cool. There’s too much judgment in the world and parenting is guilt filled enough without adding more shit to that. My eldest wasn’t breastfed and we put him in a cot in his own room when he was about four weeks old. He’s a happy, healthy lovely boy. We’re taking a more attached approach with Clark and that works for us but it might not work for everyone. 

It’s funny all the plans you have before the baby comes. I planned to breastfeed for two weeks, you were gonna sleep in your lovely bedside crib for six months, then a cot in our room and at one year go into your own room. I was gonna return to my private practice a month after you were born and Grandma was gonna take care of you while I did. I was also gonna have dieted and be back in my size 12s yonks ago.

Hehee silly Nina.

What’s actually happened is we’ve given this year to you and followed your lead in every way. You didn’t want to sleep in your bedside crib. Our first night home you somehow managed to manoeuvre your teeny body over to mine snuggled in close and that’s where you’ve stayed pretty much ever since.

It was like something clicked in with me then I stopped listening to the ghosts in the nursery, stopped listening to the shoulds and musts. Ignored words like routines and spoiling and you need to have time for yourselves. You spent nine months growing in this safe, warm, zen like place. Every need met, me a part of you and you a part of me only to be launched out into a cold loud scary world. Of course we’re gonna transition you into that SLOWLY. It didn’t feel right for us to force you to sleep alone or to ignore your cries. A teeny helpless baby cries, actually if anyone cries you comfort them right, that’s never gonna be a bad thing, meeting someone’s needs OH YOU MONSTER you’re cuddling that baby again.

YOU CAN NOT SPOIL A BABY WITH LOVE. You spoil a child by replacing presence with presents (I read that the other day, so spot on)

I dunno we’re obsessed with making babies independent haha its so silly. You will become independent eventually but to try to train you for our own convenience that’s ridiculous. We didn’t have a baby so our lives could stay exactly the same we had one so we could experience something new.

I’ve not had a full nights sleep in 18 months. The way I see it is this though, some people have sleepless nights for horrible reasons. I have sleepless nights for the best reason ever. Plus as parents we’re sold a lot of sleep myths before we have kids. Like for example some babies potty train early but the average is two-three right. So if we were told to expect our baby to potty train by a year and our baby didn’t then we’d feel like shitty parents and wonder what was wrong with our baby. It’s the same with sleep most babies need to be fed in the night they have teeny tummies. Yet we become obsessed with getting them to sleep through as soon as possible, it’s a question that other people ask constantly “Are they sleeping through yet?” We’re almost made to feel like bad parents if we say no. But If we were told NOT to expect our baby to sleep through before a year old then we wouldn’t feel short changed when they didn’t and random old people in supermarkets wouldn’t look so horrified when I tell them he still wakes up every two hours ALL NIGHT.

I’ve not been out in the evening (minus you) yet, since you were born and I’m ok with that too. See time is flying by way too fast and all too soon you’ll all be grown up and we’ll have endless child free evenings to do what we want. That’ll be great, I’m looking forward to meals out and grown up trips to the cinema, dancing, getting boozy, lay ins and loud sex but I know I’ll look back and wish I could hold you one more time, I’ll long for a babe to nurse, I’ll try so hard to remember what it felt like, what you smell like, I’ll miss having a chubby little baby grinning and climbing all over me in the morning. I’ll miss those days so hard.

This is all too fleeting. For that reason you have us 100%. Sometimes I’ll still get cranky, I’ll long for a full nights sleep, I’ll wish I could smoke a cheeky little jazz cigarette, some evenings I’ll wish you were in a routine, sometimes I’ll find myself thinking I can’t wait till you’re old enough to do this or that but then I look at your wonderful big brothers. So grown up. It all comes eventually. Too fast. Way too fast.

I love you little boy.

Just slow down with the growing up a little bit okay.

Strong like King Kong

Today I realised something. I am absolutely bloody useless at not being big brave and strong.

I’m fine I’m fine. I’m okay. No seriously I’m fine. Ack gawwd I’m fine. Totally got this. Absolutely fine. Repeat FOREVER (Well the last 34 years)

I’m not fine today though and my silly old noggin isn’t processing things proper so I’m writing to try and get it out and to make sense of it.

Now we knew surgery was gonna happen eventually for Clark. It sucks massive sweaty balls but unfortunately we live in a world where if you’re slightly different people judge and mock. It’s shit. I grew up with a similar lump on my back to what Clarks got and I had the usual taunts of camel and – well actually just camel really. Kids at my school clearly didn’t think outside of the box. We discussed it at length the option of getting his lump removed. We came to the conclusion that if we could avoid Clark being taunted and having to learn to deal with it and be thick skinned and all that bollocks then we’d do it, we’d take the surgical option. Plus you know there’s shit in there that needs fixing.

Clark has Lumbosacral Lipomyelocele Spinabifida (Catchy name huh) and at 8 months old is classed as symptom free (So so far he has good leg movement etc) Stats say that with kids like Clark 50% of them will eventually need surgery as they’ll start to deteriorate, that also means 50% wont. Normally it’s practice in the UK that they won’t operate on children until they start deteriorating.

Up until about four years ago Clarks fab Doctor at Great Ormond Street Doctor Thompson had the same view. However a colleague of his Dr Pang in California has been doing preventive surgery in a new way than what the surgeons over here had been doing and his results were really encouraging.

After shadowing him for a few weeks in 2011 Dr Thompson began this new surgery over here but still only on children that were showing deterioration.
He said it’s always a big conundrum that comes up in meetings about Spinabifida, does the risk outweigh the benefit when it comes to preventive surgery but on the other hand if surgery is left till something goes wrong maybe it then can’t be fixed.

He’s now come round to the idea of preventive surgery and has been operating on children like Clark for the last few years. So next year not only will he take away the lump on Clarks back (well as much as he possibly can) he’ll also preform preventative surgery to hopefully stop Clark from deteriorating.

Living it up after the hospital

Living it up after the hospital

Now I’m the sort of person that likes to know what’s happening, so when Doctor T said yup I’m gonna operate and I’ll do it when Clark is 15 months I felt relieved that we were leaving with an action plan. So I announced what was happening to the world via the medium of text and instagram and faceballs and I did it in quite a jolly and upbeat way.

Then the lovely replies came in, and they were lovely and some of them said things like thats excellent news you must be so pleased, brilliant news, good news etc and then I start to think, hang on no it’s not, it’s fucking awful news, my baby has to have major spinal surgery and a large part of himself cut off and he’s gonna be in a hospital for ten days and he’ll be in pain after and I’ll be away from my big boys for ten days and OHMYGOD this couldn’t be more the opposite of amazing news. But then I worried that if I’d been more honest with my feelings I’d get sympathy and there’s nothing I hate more than sympathy, I don’t want virtual hugs, I don’t want you to tell me everything is gonna be fine, HOW DO YOU KNOW THAT? Don’t feel sorry for me, do not feel sorry for my Son, WE’RE FINE.

Wow I’m like the worst person to try and comfort in a crisis right? (Stick with me I’m learning)

So today I got angry and then I listened to a Bruno Mars song 12 times in a row like a psycho and I did many cries. Once I was done with the crying I realised it was ok to not be totally brave and I dipped my toes in the water of emotional honesty and  posted a little thing on instagram and people said lovely things to me and actually it felt really nice because it was real. A few times I wanted to shout I’VE TOTALLY GOT THIS SHUT UP I’M FINE OBVIOUSLY but then I stopped because actually I’m not. Not today I’m not and actually that’s ok.

Just because I’m a total super badass Counsellor lady doesn’t mean that I don’t need a bit of support sometimes so thank you to all those who’ve shown that and I promise to try and be a bit more open to it in the future.

It has got me thinking about the subject of what to say to someone who is going through something rubbish though, a lot of us struggle with it. First instincts generally are to try and fix it, to try and make them see the positives, to tell them you’re sorry, to tell them everything will be ok. Now I’m not saying that’s wrong, christ any support is bloomin lovely but I know for me personally sometimes I struggle with the right thing to say and I know darn well I make it REALLY hard for people to know what to say to me (I’M SORRY) It’s an occupational hazard, seriously once you’ve been on the receiving end of a bit of proper active listening you get totally spoilt. Plus what with the whole I’M TOTALLY BRAVE AND FINE AND DON’T YOU DARE FEEL SORRY FOR ME thing I’m pretty much a nightmare but hey remember I’m learning. Yo.

So yeah we try and fix stuff, we say everything will be fine, we try and find the magic words to make everything better. When actually what most of us want to hear is I’m here for you, I’m thinking about you, I love you.

It’s showing empathy not sympathy.

Our job isn’t to fix it or even make it better our job is just to listen, give someone a space to off load their shit and to feel safe in doing so. We don’t need to think of something to say that will make them feel better, chances are nothing we’ll say will make them feel better but listening without judgment, without helpfully trying to make it better (cos actually that’s just pressure for the other person to be ok when they don’t feel ok) to simply empathise with what they’re going through or simply be there with them while they go through it is one of the most helpful useful things we can do for someone going through a rough patch. That and make them cake.

This video (It’s really short so watch it) beautifully highlights the difference between empathy and sympathy

Now of course someone can only be empathic to what you’re feeling if you actually tell them what you’re feeling so thank you for sticking with me through my EVERYTHING IS ABSOLUTELY TOTALLY DEFINITELY FINE and my OH MY GOD I’M CRYING AT BRUNO MARS AGAIN. You’re good people.

Your support as always means the world. xx

Co-Sleeping (DON’T YOU JUDGE ME)

I think I mentioned previously what a massive Co-Sleeping judger I used to be. My first two little chimps had amazing bedtime routines and were both in their own cots/own rooms within the first six months and I’m pretty sure they slept through the night too. Bedtime and sleep routines were very much about what was convenient for me, those babies needed to get to bed so me and my then husband would have our evenings. Thats what people said at the time, the importance of routines and having your evenings. I’d not even heard of Co-Sleeping then, babies go in cots, that was all there was to it. Thats all I knew.

I knew I was going to breastfeed Clark and a client of mine who I was seeing when I was pregnant told me about her Co-Sleeping crib. She explained how in the night when baby wanted a feed she’d just scooch him over then scooch him back again and it hardly disturbed her at all. I’m all for sleep, bloody love sleep, so anything that was gonna protect mine was alright by me. So we rented a bednest from the NCT.

Sleepy Nest

Sleepy Nest

All good plans eh…

So Clark was born and our first night together was a living hell. Not because of Clark solely but because six newborns in one ward plus nurses coming and checking you every hour means no sleep. OH MY GOD WHEN WILL I SLEEP? No sleep. On a plus you get to coo and stare over this tiny little beautiful creature you popped out of your vagina. MIRACLES. Small plus though, I was fucking knackered.

Lovely J totally stepped up though and sorted me out with my own room the next day, it was like bliss. It WAS bliss. Baby C was feeding every hour and a half through the night and  having to sit up and lean over the plastic crib thing then pick him up then sit up in bed and feed him was not fun. I quickly realised I could stick the bars up on the bed, pad them out and have him sleep in with me. It was wonderful I’d curl myself around him and he’d latch on with me still laying down. I also assured the nurses I’d totally got this, I’m a Mum of three, all I actually want tonight is sleep, so they kindly left me to it. The next morning I practically bounded out of bed, I was like a spring lamb a slightly wobbly, chubby, greasy spring lamb but a lamb none the less.

When we got home we had all good intentions for putting Clark in his bednest, Clark however had absolutely no plans to go in it at all. Now yes we could have persisted we could have gently trained him to use his crib but he wanted to sleep next to me. What a brat huh?! Nine months safely snuggled in the warmth of my womb and he’s got the bloody cheek to still want to sleep snuggled next to me when he’s out. Arse hole.

That first night back at home I laid him about a foot away from me and he somehow managed to manoeuvre himself so he was pushed right up against my boobs. It was absolutely adorable. I suddenly didn’t understand how I could have ever put the other two in their own cribs, fuck their own rooms, so young. With Clark laying next to me I was so aware of him, if something had been up I would have known. It just felt like the most normal natural thing to do. I am woman hear me ROAR.

I think I stated in a previous post about how cross and judgemental people get about Co-sleeping, they’ll scream how dangerous it is, they’ll tell you you’re making a rod for your own back by not putting them in their own cot Blah Blah Blah etc etc. I’m not going to fight the corner for Co-sleeping it HAS to be an individual choice, believe me I want to go hell for leather about the benefits because there is fucking tons but I wont, because no one likes a preacher and hey you know where to find me if you wanna ask questions and HELLO Google. Really do, research research research! Start with Dr Sears he’s lovely. After our first night I googled and googled, I read good and bad articles about Co-Sleeping, the people it worked for and the people it didn’t, I read how to do it safely (I’m no longer allowed to snort a ton of coke before bed followed by a pint of gin) and made an informed decision that it was right for us. It might not be for you though and that’s totally cool.

As I said before do your research, if I’d known about the benefits of Co-Sleeping with the other boys I would have done it. Research your options then you can make an informed choice.

It still might not work for you. We’re lucky so far that Clark’s a quiet sleeper and he doesn’t disturb us or us him. Mainly it works for us because I’m lazy though. I salute you Mums who get out of bed in the middle of the night to feed. I think I’d have had a breakdown if I had to do that for Mr I wanna snack at Ninas 24hr diner ALL NIGHT LONG.

It can be an absolute pain, sometimes I’m so envious of babies who are in a routine and go to sleep, like at five months old one of us still has to be upstairs with him at night. So right now J’s up there while I’m writing this. You can’t just put him down to bed and go Nanight Clarky, he freaks the fuck out. Again yes we could sleep train him but for the love of god he’s a baby! He needs us, I seriously don’t take any beef with that. I get his jammas on, read him a story and then I lay next to him, he immediately rolls onto his side and snuggles in for a feed and it really is the best thing ever. I then try and ninja my way out of there so I can sneak downstairs and sometimes I can but mainly he wakes up and says NO MOTHER YOU WILL NOT LEAVE THIS ROOM GET BACK HERE. So I’ll stay upstairs with him and hold his hand and kiss his head and just breathe him in because this won’t go on forever and I’ll be so fucking sad when it stops.

Eight hours sleep again though Nina? Yeah it’ll definitely ease the sting.

As for me and J having our evenings together, most of the time we do, we might both go upstairs, J playing games and me looking through instagram (exactly like we used to do before we had Clark) Shock horror sometimes we still bring him downstairs to sleep on one of us if we end up watching a film. It works. Whatever. Will it always work? Maybe not. To be honest we’re kind of just going with it, not really sure what the next move is. Right now we’re happy and Clarks happy and my lazy arse gets to stay in bed all night.

Plus we get to wake up to this every day and well that’s just bloody brilliant.

Morning Clarky

Morning Clarky

 

 

 

Three months on

I realised today that my last post was this great big dramatic sedation post and I never even put the results of the mutha fudging MRI.

It was good!

Well so far so good.

We took a trip to Great Ormond Street hospital and Clark had his first trip on a train which he loved.

Just chiilin on a train innit.

Just chillin on a train innit.

So this first appointment was a kind of base appointment, measure where he’s at so they’ve got something to compare it too. He had his kidneys ultrasounded first (clearly not a real word) and he LOVED this mainly because he got to watch cartoons whilst it was going on. Everyone was diggin on his boy tights AGAIN and generally just cooing over the adorableness that is C-Daaawg.

Thems tights (Totes manly)

Thems tights (Totes manly)

After a few more little tests we were off to see the consultant for the MRI results. Most of this was a blur, we had waited for ages to be seen and I was getting more and more nervous. I wasn’t sure if they’d say C needed an operation ASAP and the whole thing was starting to freak me out.

Thankfully the results at the moment are good, his Spine isn’t tethered yet, he’s showing no symptoms yet. His lump on his back doesn’t appear to contain nerves. All great positives.

All great positives for now.

There’s a lot of uncertainty.

A lot of what ifs and maybes.

I’m shit with that.

J came out beaming that C didn’t need an operation right now and I came out frustrated that there were no definite answers.

The lovely consultant said he usually waits to operate after a baby/child shows symptoms but he also said he was coming round to the idea of preventative surgery too. He said It’s highly likely young Mr C will need an operation at some point but he generally waits till they’re after a year old.

So we have to go back in May to talk about it some more.

At some point me and J are probably going to have to make some really hard parenting decisions.

Not today though.

Today Clark is just Clark, currently upstairs not going to sleep for Daddy while I’m down here writing Blog posts. He’s fucking brilliant, aced his physio appointment the other day and shows all the same mobility/strength/sensation as someone without Spina Bifida. So for now we don’t have to think about operations or any other blurghh stuff. Occasionally I get a pang, a worry will creep in, one of them stupid what ifs and maybes but then I’ll look at him and he’ll grin up at me with this ridiculously huge smile and I think of course you’re gonna be ok, you’re gonna be absolutely bloody amazing.

(Oh and the best part of our visit to GOSH. Free Teddy!)

Your ovaries twitching yet?

Your ovaries twitching yet?

Don’t wanna be sedated

I wasn’t sure if it was weird writing about today but I figured we didn’t really know what today involved so maybe weren’t prepared for certain aspects. Maybe someone will read this who is going through the same thing and it will help them, so that’s gotta be good right? I do believe in protecting a childs privacy though and although I’m writing about Clarks story now in a few years time when he’s at school age I won’t. Okay as you were…

Today marked our first hospital visit in what’s possibly going to be a LONG journey. It’s also the first time I’ve composed a post on my phone so apologies for typos and what not.

God I’m tired.

It’s been two months since Clark was born and we got his Spinabifida diagnosis. We knew he’d have to have an MRI scan and we knew they’d sedate him. Neither of those things we were looking forward to but we’re pretty good at focusing on the here and now so we’ve not spent the last two months stressing (too much!) image So he had his last feed at 7am and we got to the hospital at nine. By 10 he was getting antsy but we soothed and rocked him and he slept till 11. Next came some magic cream, I’ve gotta lotta time for magic cream they should totes give it to them before all their jabs. Plus they wrapped his hands up so he looked like a tiny boxer.

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He slept like this for another half hour before he got HANGRY. Hungry angry produces a mega cry from young Mr C and no amount of rocking was cutting it. Nearly five hours without a feed is unheard of from the boob monster so he really did have a total meltdown.

IMG_20131111_105849 Oh god that face.

Next came the really shitty bit and surprisingly not something I’d thought would be a problem. They inserted his cannula(sp?) and he cried and I cried but magic cream meant it wasn’t through pain of the needle but more FOR FUCK SAKE JUST FEED ME. (They put that in as a plan B if the oral sedation doesn’t work.)

Oral sedation ERGHHHHH. Ok starving hungry baby we’re gonna put some liquid in your mouth. It’s not quite what you’re hoping for though. This is the bit I’d not given much thought to and it turned out to be THE worst bit. The nurse (who was amazing all day, proper lovely lady) trickling this God awful liquid into his mouth. With each little bit he’d gag and gasp and choke and cry and I’m holding him and he’s looking up at me and he looks terrified and all I wanna do is snatch him away and go nurse him and forget all about this silly business.

Sometimes being a parent fucking sucks.

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Sedated

Sedated

That really was the worst part of the day well that and being forced to listen to the Backstreet boys through the MRI headphones. Scan was over in twenty minutes, little force start as he kept wiggling and needed MORE sedation. After that he was totally out for the count.

IMG_20131111_131130God that picture kills me, he looked so teeny in the big bed. We just had to wait for him to wake up after that. We’re both there opening crisp packets extra loud and not bothering to whisper. Me, J and my now MASSIVE boobs just wanted him up. When he eventually woke up and after fifteen minutes of him getting in a right tiz because he was too drowsy to latch we had the most satisfying feed ever.

IMG_20131111_152655Phew.

Now we’re home and he’s fed again and is sleeping like a total drunk. We’re all a bit tired but we survived. HOORAY! Now we wait to go up for our results at Great Ormond Street in a few weeks.

So things that struck me today…

There’s no one in the whole world I’d rather go through the crappy levels of life with than J (that man really is my rock)

Clarky is surrounded by people who love and care about him (and us) some of whom we’ve never even met (thank you internet friends who live in our computers) and real life friends and family too OBV.

Lastly being present and grounded in the moment once again is a BRILLIANT tool. Today was really dire at several points and I sobbed when it was BUT it would have been a whole lot worse if I’d spent the last two months sobbing and worrying about it. Deal with stuff as it happens. Stay in the moment maaaaaaaan.

So onwards into new adventures! Amazing BOY tight wearing adventures (they seriously are so cool) and thank you as always for all your love and support.

Hey Mama Wolf

‘Wolf pups are born blind and deaf in an underground den after a 63-day gestation period. Litter size averages 4 to 6 pups. During the first 3 weeks, pups nurse every 4 to 6 hours and need help regulating their body temperatures. The mother usually stays with her young in the den, eating food brought to her by other members of the pack.’

Mama Wolf has got it well sussed. All snuggled up in her den nursing her babies while everyone else fetches her grub. Now I’m no wolf expert but I’d imagine if you tried to take one of Mamas cubs away from her she’d rip your pretty face off. This is pretty much exactly how I felt when I was pregnant with all of my boys.

I'M HORMONAL YOU ARSE HOLES.

I’M HORMONAL YOU ARSE HOLES.

Life was different when I was pregnant with Charlie and Casper, I was in a different relationship, I was younger, I hadn’t done my Counselling training and I possibly felt I had to prove something as a Mum. I remember feeling these protective almost possessive feelings towards the baby growing in me. I’d think about people wanting to come round and hold the baby and it would make me feel weird. I’d look at some people who have loads of family at the birth and it freaked me out, I couldn’t imagine anything worse (I mean would you really want your Mother in Law seeing your Vag?) If somebody had offered me a little cozy cave to go live in just me and my cubs I would have totally said yes. I didn’t share these feelings though, I figured people would think I was a bit mental or think I was a shit Mum because I didn’t want other people holding my babies. I spent a lot of my pregnancy stressing, imagining the visitors, imagining how I’d feel, I got myself proper worked up. After they were born the visitors came and I’d sit and watch people holding them and I’d clench my fists and grit my teeth and think ‘I want my baby back’ but I never said anything and at some point thankfully it passed.

Fast forward five years to my pregnancy with Clark and at first I didn’t feel like that at all.  I’m a different person now, I’m in a different relationship. I’m supposedly a well balanced individual, heck I’m a therapist, totally rational and well sorted. Right? Ha.  To be honest I was almost a bit worried that I didn’t feel like that at first. I was so busy working and being a Mum to the other two that I didn’t feel I had bonded with the little boy growing inside me at all. I think it was after his Spina Bifida  diagnosis that it hit. I was sitting in the car while Jase was in the shop paying for petrol and all these emotions washed over me. I loved this little boy and I was going to protect him no matter what and I most definitely absolutely fundamentally did not want anyone picking him up or even so much as looking at him really. Oh fuck. This might be a bit of a problem. Maybe I wasn’t so well balanced after all.

I remember Jase getting back in the car and me blurting out “Jase I don’t want anyone to hold the baby, he’s my baby Jase I think It’s ok for you to hold him but no one else. Shit. What do I do?” Jase being Jase told me that “Well people just wont hold him then”. (This is why I love him very very much) I knew rationally that people would have to hold him though, his Grandparents needed to love on him and all his lovely Aunties and Uncles and Cousins and my friends and OH GOD DO NOT TOUCH MY BABY OR I WILL RIP YOUR FACE OFF.

Yup I was dealing with it really well.

Hey Mama Wolf

Hey Mama Wolf

I’d make myself feel sick by imagining people holding Clark, what if they held him wrong? What if they hurt his back? People would write lovely things on my Facebook about coming round to cuddle him and I’d think Fuck off, you’re not touching my baby, MY baby, this became my catchphrase throughout the pregnancy. I didn’t know anyone who felt like this when they were pregnant, didn’t know anyone who wanted to grab their kids and Mr and run away and never come back and I was starting to feel like a massive freak, so I did what anyone in my position would do and headed straight for Google.

“Don’t want anyone to hold my baby”

Hellooooooo Loopy Mamas! YES! There were other people who felt JUST like me. One Mum said she didn’t let anyone hold any of her children till they were three years old HA! Of course there was other Mums saying they couldn’t wait for people to hold their babies and it was good for the baby to get passed around and cuddled by everyone and all this other stuff designed to make us slightly more Wolf like Mums feel bad but I ignored them PIPE DOWN PERFECT MUMS NO ONE ASKED YOU. There were Mums that said the feeling went away, Mums who said it was fine to haul up alone for a few weeks with your family and some who said they just gritted their teeth and got through it. What became clear to me was that firstly it was better to feel this attached to baby than not attached at all and secondly this actually is my baby and I can do whatever I want and finally and most importantly I need to talk about this and so I did.

I risked my Mum and big Sister thinking I was a fruit cake and I told them how I felt. I told them I knew it was silly and probably not that rational but I just felt like I didn’t want anyone to hold him and I was sure the feeling would pass but I just wanted to say something. To my surprise they were both wonderful, they said they’d never come in and just pick him up, they said they’d wait for me to feel okay with them holding him before they did and if I didn’t want them to then that was fine. I remember telling Mum about the lady who didn’t let anyone hold her kids for three years and we joked that Clark would be in college before I let her have a cuddle with him.

By voicing my concerns, talking about my feeeelings maaaaan, I felt better, I no longer had the knot in my stomach when I thought about them cuddling Clark. Suddenly I wanted them to, I wanted them to fall in love with him just like I had. This honesty malarkey was bloody brilliant!

After he was born I didn’t hide us all away after-all, we welcomed visitors and I was okay. It wasn’t always easy, a few times I felt myself feeling anxious and found myself asking a lovely visitor ‘Can I have the baby back now please’ and I’d give him a cuddle and a kiss and get my little Clark top up and be able to pass him back once again. Jase was fantastic throughout, if any visitors were over hogging the baby he’d subtly get him back and give him to me and he’d also give me big cuddles and tell me how fantastic I was doing. Probably sounds silly to some but I really needed that support, I needed someone to understand how I felt and not judge me and just take care of me while I was feeling a bit wobbly. He’s a good man that one.

My very own Paulie Bleeker

My very own Paulie Bleeker

So seven weeks down the line and I’ve no issues with people cuddling Clark now, it’s lovely watching everyone I love love on him and in turn it’s brilliant watching him smile at all my favourite people. If I was a Wolf right now I’d be at the point where I’m totally okay with you pawing my cub but if you take him further than 30 feet out of my den I WILL RIP YOUR FACE OFF. Ummm baby steps right?

I’m quite sure Dr Sears would say that’s okay, I mean we are dipping our toes into the whole attachment parenting thing and he’s so diddy, seven weeks on this planet is no time at all. I’m just not ready to be away from him yet and that’s alright.

However much we’re living in a modern world I think some of us still retain a lot of our primal instincts and for some people that means keeping our cubs close to us.

There is nothing NOTHING wrong with wanting to hog your newborn baby all to yourself for a while, if you don’t want every Aunty, Uncle and distant cousin coming over and cuddling your baby then speak up because you’ll never get that time back. If you can’t speak up then find an advocate who will speak up for you. Don’t sit there and watch the baby get passed around if that’s not something you’re comfortable with. There are no rules to this, you might welcome visitors straight away, you might have the whole family at the birth peering down at your lady garden eagerly awaiting the new arrival. Or you might wanna be left alone for a while to enjoy your new baby in peace. If someone’s hogging the baby then ask for the baby back, much better to peeve them off a bit than to sit there getting yourself in a pickle. Now is not the time for politeness you’ve carried that baby for nine months, you can’t go on a trampoline anymore and wont be having the luxury of a full 8 hours sleep for a very long time. Therefore you get to call all the shots. If people come over get them to put the hoover round or make you food, you did all the work, you get the wonderful smelling, warm, milky baby bundle prize at the end of it.

Most importantly TALK TALK TALK! Those first few weeks after baby is born are like no other, it really is your time a really special time so tell people want you want. If you are experiencing any anxiety about visitors or people holding the baby then voice your concerns, the more they go unsaid the bigger they will grow. Chances are like me, once you’ve got it out there you’ll feel better but the reason I felt better was because I knew that I had prepared people. So I knew that afterwards if I did want to be left alone that would be okay, I knew if I didn’t want people holding the baby that would be okay and that was a huge weight off my mind. It meant I didn’t stress about that stuff all through the pregnancy like I did with the other two.  You grew this precious thing inside you so it’s totally normal to feel protective towards it. Of course if those feelings spiraled out of control then it might be worth talking to your health visitor or GP but wanting to keep your new baby with you at first, to not let it out of your arms while it’s so new and tiny and defenseless, that’s totally normal, it’s what Mama Wolf would do.

 

 

 

 

You say patatah I say Oh my god you Co-Sleep!?

What have bum holes and opinions got in common? Everyone’s got one! Ba Boom Cha! Thank you folks I’m here all week, don’t forget to tip your waitress. (SORRY)

Ok where was I? Ah yes opinions. Parenting opinions. God us humans can be a right judgmental bunch of wallys can’t we? People can get so outraged when they see someone parenting in a way that they don’t agree with.

I’m onto my third tiny human now and with each one I’ve parented a little differently and I like to think a little better. Its been nearly nine years since Charlie was born and I now find myself looking into things like attachment parenting and respectful parenting, gentle parenting and positive parenting. Ha! God it makes it seem like I was a tyrant to Charlie. I wasn’t. It’s just I thought routines were important and getting a baby to sleep in their own room was an achievement and sleep training was a good thing. I was young, I read Gina ford, I didn’t realise there was another way. Another way for US that is. I’m not saying those other things are bad they just don’t suit our family.

So things are different with Clark, firstly we carry him A LOT, the correct term would be Baby-Wearing something i’d imagine Lady Gaga would do but maybe slightly differently. Since we got home from the hospital if he’s not being cuddled in arms then he’s being carried in a wrap or sling, sometimes he might sleep on his little bean bag but mostly he’s with us. Here I am just settling down to write this with Clark sound asleep in his ring sling. (My concentration face is pure SEX)

Baby gaga Wearing

Baby gaga Wearing

I don’t carry him outside, my mobility’s just not strong enough for that. It’s something I’m a bit gutted about actually as I follow several people on Instagram who baby-wear exclusively and they post up these amazing outdoor shots and I think aww I wish we could do that. We can’t though so you know get over it BUT I found myself worrying the other day when posting up a picture of clark in his buggy that maybe these exclusive baby-wearing mamas would judge me and my buggy. Then on the flip side of that I often wait for raised eyebrows when I talk to more old school people about how he only really naps in our arms “Well you’re making a rod for your own back there dear…You know you’re going to spoil him with all those cuddles”

Then there’s the reaction when I tell them he sleeps in our bed.

OH MY GOD HE SLEEPS IN YOUR BED YOU’RE GOING TO SQUASH HIM.

But but BUT we did get him a bedside crib he just prefers to sleep next to me I’M SORRY!

 

Everyone wants to hang out in my bed.

Everyone wants to hang out in my bed.

To be fair I’ve not really encountered any hideous reactions to our choices, not in person from anyone we know anyway but that’s because all the people we know are awesome. You know where I have read things pulling apart our parenting choices though…Yup you got it THE INTERNET. There’s no better place to find an opinion, especially on a parenting page on Faceballs.  I like browsing through the Attachment Parenting and Breastfeeding pages, most of the time they’re informative and supportive BUT you’ll always get your trolls and these pages seem to have a lot. You’ll have people screaming that co-sleeping kills babies (Obviously if done in a non safe way it can, much like drink driving, or leaving the lid off the bleach) (I will write a post about this soon!) then on the flip side you’ll have other people yelling that cots are just cages for babies and they call SIDS cot death for a reason.  Your Co-Sleeper will end up clingy! Your cot sleeper will be insecure! OH MY GOD.

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Gah.

Wanna know another topic that really gets people raging? The big ol Breast Vs Bottle debate, yes breast milk is more nutritional than formula that doesn’t need debating really BUT what about the psychological effects? What about when we make a mother feel so so guilty for even considering bottle feeding that she breastfeeds when it’s really not best for HER. Happy Mummy happy baby right? Stressed Mummy STRESSED baby. Some people are not physically able to breastfeed so imagine how shit they end up feeling when it’s rammed down their throat that they’re not doing best by their child. Fuck it some women just plain old don’t want to breastfeed and why should that be seen as selfish? Now don’t get me wrong I LOVE breastfeeding, like proper passionate about it to the point where I’d like to extend my counselling skills and become a breastfeeding advocate. I just don’t think we should judge someone who chooses not to. For various reasons I never breastfed Charlie, and Casper I only did for a few months because back then, well I need to hold my hand up and admit that I used to be a right judgmental fuck too “Ooooh no if they’ve got teeth then it’s time to stop. If they can ask for it then it’s a bit weird” Silly silly Nina, I knew not what I was saying! See now I’m planning to (hopefully if my boobs allow it) breastfeed Clark till he’s two or when he decides he no longer wants it. Yeah yeah chuck your bitty jokes at me now.

I’ve read so many massively opinionated statements about co-sleeping and extended breastfeeding it has made me for a second question if we’re doing the right thing. I mean literally saying that I’m gonna kill my baby and i’m a pervert for wanting to breastfeed a kid that can talk. Now that’s just shit isn’t it. Because then if I do put him in his own cot i’ve read THAT will cause cot death UGGHHMAGAAHHHD. Oh and if I don’t breastfeed he’ll be stupid and obese. Fuck. Gah. SO WHAT CHOICE DO I MAKE?

We’re ok though right? I mean look at this lovely picture of Jase…

McDelish

McDelish

Baby-Wearing like a proper good ‘we recycle and eat granola’  parent but wait, what’s that in his hand? Oh my god it’s a dirty Sausage and Egg McMuffin, dripping it’s McSatan juice all over our precious newborns head. Chuck that into a full on hippy parenting page and watch some SOME of the vegans among them rip into us dirty meat eaters like hyenas into umm some warm meat? We know McDonalds is shit and terrible and evil but making us feel guilty for eating it is just gonna make me depressed and crave a little hamburger. Seriously those things are like crack. STOP JUDGING MEEEEEEE!

Parenting is so hard. One of the most guilt ridden jobs that’s for sure, I guess that’s why we judge. I’m gonna pick holes in their parenting before they pick holes in mine. Yet we’re all in the same boat, we’re all terrified of raising little serial killers (Just me?) So surely we should all be supporting each other and whatever decisions we make as parents.

“Let’s not wait for each other to fail but cheer when we succeed” ~ Me just now, made that up. God I’m good.

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I’m passionate about the parenting journey we’re on, it’s like when you’ve watched a great film and want to tell all your mates to go see it too.  I want to talk about baby-wearing and co-sleeping and all the other things we’re trying and I will use this little space on the internet to do just that.  Does that mean you’ll like my way of parenting? Maybe not. Does that mean I’m dissing your way? No of course not. Do I think my ways better than your way? NO NO NO! You know what how about you share your way too and why it works for you and I might learn something. We’re just doing what feels right for us, that’s all any of us can do eh? But it’s good to share our parenting journeys good and bad because maybe we’ll learn something from each other. Maybe we’ll want to try something we hadn’t heard of before. Maybe I’ll fess up in a few years that co-sleeping created a clingy fussy nightmare of a child and it’s best you avoid it like the plague or fat free cheese.

Lets share but not preach. Listen but not judge. Support but not condemn.

Lastly let’s all Give each other a virtual high five because however you’re choosing to do it, you ARE doing it. You’re being a parent and it’s unlikely you’ll get thanks for many many years (if at all). So let me take this moment to say you’re brilliant. You formula feeders are brilliant. You breastfeeders are brilliant. Well done you baby wearing Mamas and Papas, congratulations co-sleepers and hooray for all you mums and dads who’ve got your babies happy in their own cots. High fives to us all, we’re doing our best and that really is BRILLIANT.

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