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PREGNANCY & ME // UPDATE: 1

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A few weeks back we had our 20 week scan and we’re ridiculously excited to say, we’re having a baby GIRL! 🖤🖤🖤

An ACTUAL baby girl! ⚡️🖤✌️

I’m almost 23 weeks pregnant now and still feeling waves of disbelief that I have a little girl growing super well inside me. But believe me when I say, we would have been happy either way. Especially considering how long it’s taken to get to this point – a healthy baby is all we wish for.

Eli has been desperate for a sibling for as long as I can remember now and he will be the BEST Big Bro, we just know it. He reckons his little sister is going to be “annoying” but we know he’s happy deep down 😂 Oh and he refused to have his photo taken with the scan of his little sister (!!!) because he was down with the pox 🙈

I always vowed that if we had a girl, I wouldn’t be into dressing her in all that pink stuff! Well, when I said that, I might have been lying because so far, all I have bought is PINK! Ha. It’s all just too cute though man!

The pictured Big Bro Tee is from the gorgeous @lennieandco; which we bought it ahead of our last pregnancy in 2017. It’s been sat in Eli’s wardrobe, waiting for a happy baby announcement since. Incidentally, the 20 week scan that we had, was originally scheduled to be Friday 15th March – which was our due date for my second pregnancy. It would have could have been a 1st birthday for that pregnancy🌈 I had to get the date changed. It just didn’t seem ‘right’.  It all feels a little bit happy sad🖤
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TRYING AGAIN, AFTER LOSS

(If this is your first time here on my blog, HELLO! I had a miscarriage in August 2017. It wasn’t ‘over’ until the ERPC in October 2017..  This is a lengthy post – as always, I am sharing our experience as a means to continue the conversation of trying again after loss).

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OK, I’ll start from the very beginning…

 

A year ago (January 2018), I stopped drinking. I started taking the recommended dose of Folic Acid and additionally, Vitamin B12.  (Just incase).  The “better” eating happened. Then when we moved to Manchester in May, I began the exercise – cycling to school and back twice a day was also helping my mood! I’d been on the pill for a few months post-miscarriage to get my periods back into a regular routine, but came off them at the start of 2018. Every single person you speak to regarding your miscarriage will tell you, “you’re most fertile after having a miscarriage… you’ll fall again quickly”. 

We decided that we weren’t going to look at fertile days, or take ‘trying’ too seriously. After my Miscarriage, I didn’t want ANY added stress or pressure. We wanted it to happen on our own terms… after all,  “you’ll be amazingly fertile after a miscarriage“.

But after our trip to Florida in June, I started to get a bit anxious about trying again and opened up my FLO app to begin tracking my periods, mood, health and everything in-between. From then on, we began trying on the most fertile days of the month.

September came and I still hadn’t fallen. Now, I understand that this really isn’t a long time, compared to other couples who try and try and try for years. But I’d fallen pregnant with my first two pregnancies within 3 months of trying. Granted, I was a lot older now – but I am only 32 still. Not exactly elderly! I lost a little weight and continued cycling and enjoying walks in the great outdoors (thanks to our new National Trust membership!). I knew fine well that out of every 100 couples trying for a baby, 80 to 90 will get pregnant within 1 year. The rest will take longer, or may need help to conceive. But at the back of my mind, the whole “shouldn’t you be mega fertile now?” voices were constantly trolling at me and  I couldn’t help but worry that something else was going on in my body, that:-

  • I had no control over (ie, my Endometriosis or something more sinister…
  • Something had ‘broken’ during my ERPC procedure that had left me with some kind of scarring…
  • Or worse, had everything actually ‘come away’ following the ERPC operation?

So, September onwards, we began tracking my ovulation and BBT (Basal Body Temperature). I bought a few packs of the ‘cheapie’ ovulation kits by One Step and the results were so interesting – see below:

 

I’d really recommend the One Step Ovulation tests (and pregnancy tests too). They’re cheap, they’re accurate,  they’re clear, they’re easy to use, they worked for us. 

 

The only problem with tracking your Ovulation is that, your day begins by thinking about your fertility… This meant, I couldn’t really escape my own pressures of falling pregnant. It was alllll I could think about.  To the extend that I began to distance myself from outside of this little bubble. You can clearly see where I began a minor social media hiatus!

I was tracking everything via the app. Every little niggle! You track so much and think about it so much, that your body eventually convinces you that you’re pregnant. (Hence the early testing in September and November).  But when you’re tracking everything, you’re reminded every month when you’re bloody period arrives that you’ve failed again this month. It’s the most heartbreaking few days – every time you go to the loo and get that little reminder that your body wasn’t up for fertilisation. To top it off, we had Eli listening to my tummy to check if a baby was in there… he’s been desperate for a sibling for as long as I can remember now.

 

 

On Thursday 15th November, I was making Eli an outfit for BBC Children in Need.  Looking back at my tracking, I’d had a few ‘off days’ . I’d had period type cramps and felt so light-headed. I wasn’t due on my period for another week but thought I could be coming on early.  Then on the evening as I was finishing sewing, I managed to stab my hand with a pair of exceptionally sharp fabric scissors. Normally, I’d be fine and get a plaster. Blood does not bother me, heck, once you’ve watched 24 Hours in A&E, you can muster pretty much all of the blood.  The DRAMATIC scenes that ensued are frankly, pure comedy. I was freaking out so much. I had to lay on the bathroom floor for fear of passing out. Never, have a I ever been like that.

The next day I went to the GP to see if I could get a Tetanus injection – just incase I was pregnant. I didn’t want to get an infection. Luckily, it turns out I was up to date. Phew.

Something still didn’t sit right with me about the way I had so ridiculously overreacted the night before. So at lunchtime, I went upstairs and did a quick One Step pregnancy test. I was 99% certain it would be negative as I’d had the cramping… it was also the very first time I’d ever done a test without James by my side.

I couldn’t believe my eyes as the second line appeared in 2 1/2 minutes. Again, I nearly passed out and laid on the sofa to compose myself. I thought I better ring James. I thought he’d go mad with me for doing the test without him…. I’d kind of played it cool on the phone. I’d convinced myself that the cheap test couldn’t POSSIBLY be correct. And 5 whole days before my period was due?!

I convinced myself it was a false positive. It HAD to be, right?

At school home-time I told Eli we needed to pop to the chemist to get something for my tummy… he immediately said “Why, is there a baby in there now?!”.  “I really hope so darling”, I responded.

I got 4 of the Superdrug own pregnancy tests – the same ones we’d bought when we fell with Eli. So I had some trust in them. I’d used a variety when I fell pregnant in 2017 and going back to the Superdrug own brand tests made me feel a bit safer, weirdly.

I waited on tenterhooks for James to get home from work – and with an evening urine sample, the results were… (see below)

 

A very faint, but very positive pregnant test!

 

The second line was so faint, I couldn’t see it and had to put the picture under all of the filters on photoshop to see it. But, as I said when I fell with Eli, you can’t be a little bit pregnant, can you!?

We told Eli our news immediately. We wanted to be open and honest with him – especially as he had seen me go through our miscarriage. We told him that we would tell all our family and friends at Christmastime as a present! (And you can’t tell anyone when its a present, can you!?) HOW Eli managed to not tell anyone before Christmas, I will never know. But that kid man, he is just a total boss.

Speaking of which, I went on Timehop and we realised that we’d done our first pregnancy test with Eli on the SAME weekend – 18th November 2011. Strange; we must have conceived this baba around the same time as we conceived Eli.

Over the next few days, POW, the pregnancy symptoms came in thick and fast.I felt so sick. I was so tired. And continued to track pregnancy tests and my symptoms – just incase.

 

 

I had every single pregnancy symptom going; and then-some.

  • My skin burst into the worst cystic acne ever. Mostly on my lower cheeks and jawline.
  • ‘Morning Sickness’ – except, it’s not just the morning, is it. It’s ALL DAY and ALL EVENING.
  • The Exhaustion – I was falling asleep after dropping Eli off at school and then again straight after tea.
  • Extreme bloating – by 7pm, I was looking mega preggo.
  • Food aversions – the smell of cooking is just the WORST. Couldn’t face meat. Couldn’t face big meals. Ended up surviving on plain boiled rice and rice cakes. Good job I was taking ALL of the pregnancy vitamins by this point.
  • Couldn’t face Tea or Coffee (still can’t do my beloved (now decaf) Coffee, even the smell is nauseating).
  • Brushing my teeth became the enemy – every single time I’d bork.
  • Sheer, unadulterated, brain fog – not being able to articulate what you want to talk about or not being able to remember why you entered a room; or even why the kettle is in the fridge is somewhat frustrating and also kinda scary.
  • Increased thirst – which is quite something for me as I’m always guzzling water as it is!
  • Extreme Overheating – I had repeated ‘hot flashes’ that made me feel so faint. Luckily, touch wood, I’ve not fainted.
  • A weird one now – an version to LEGO. ACTUAL LEGO. It wasn’t that I had a want to eat it or anything, but the sight of Lego made me so, so nauseous! I had to have Eli pack it all away and not play with it in front of me. SO WEIRD. I have no idea what caused it or why. But 5 weeks on, I’m finally becoming ok with the Lego being around again.

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By 10th December, we were being seen at the Early Pregnancy Unit in Stepping Hill Hospital for an early Scan. By my app, I was exactly 7 weeks pregnant. I felt anxious but the full-on symptoms gave me hope that we would perhaps see a pregnancy sac.

And low and behold, as soon as the scan went on, the heartbeat was found. The tears of relief rolled down my cheeks. We were so bloody happy.

 

It’s difficult to put into words how you feel when the Sonographer say’s… “and there is your baby with a strong heartbeat fleeting away”. The scan looked more like 6 weeks than 7, but we were reassured that the baby would likely catch up, or the conception date could be a little out – did you know that sperm can travel for 7 days before fertilisation?

 

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Fast forward to Christmas Day and I’m 9 weeks pregnant. I’m mainly surviving on:-

  • Orange ice lollies
  • Jamaican Ginger cake
  • Ginger beer (not ginger ale, ginger beer)
  • Raw carrots – in abundance.
  • Apples – but must be cut up
  • Bananas on rice cakes with a dash of honey
  • Plain boiled rice and soy sauce
  • Yoghurts with peach compote
  • Orange drinks – Fanta or Capri sun
  • Chewy sweets – Haribo, Randoms etc
  • I can only drive if I have original Tic Tac’s
  • McDonalds Cheeseburger
  • Pickled Beetroot
  • Chips & curry
  • Chips & gravy
  • Chips with salt & vinegar
  • Salt and vinegar crisps – (preferably, Disco’s)

We also got to finally let our parents know we were with child. Which again, was another big relief. We spent the rest of the festive period SO relaxed. Which is just what I needed. This was mostly my view:-

 

Never spent so much time in bed, in my life. We decided ‘bed rest’ was for the best. This baby is so precious and I just didn’t want to overdo it by rushing about at my normal pace, lifting loads at will – up & down the stairs with laundry or the Dyson. I had also stopped cycling for fear of falling off etc. By week 11 I was just so tired, that being in bed was definitely the only place for me to be honest!

 

Also, is there a better way to spend your pregnant-life than in pyjama’s?! These ones are still my favourite, from NEXT. They also still fit, at the minute, hurrah!

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Almost up to date now. We had our 12 dating week scan on Friday 18th January, again at our local hospital of Stepping Hill. I felt sick with nerves and worry and anxiety – what if there was nothing there like our last 12 week scan? I couldn’t speak. James and I spent the 10 minute car journey in silence, him asking if I was ok… then muttering “you’re scarily quiet… “.

As is rather usual, scans were running a little late,  which is totally reasonable given the detail they require. I forbid anyone to get frustrated with this – even with a full bladder!

We were called into the scan room and soon as the sonographer addressed us I broke down in tears. She had asked a question about my previous pregnancy and what happened at my 12 week scan. To which I blubbered through the details of my miscarriage – she looked perplexed. Then we ‘clicked’ that she was in-fact  referring to the issues that came up when we had the 12 week scan with Eli – his NT measurement was high, so we were referred to the Fetal Medicine Unit at University College London Hospital (UCLH) . Because of the sensitivity of time, the referral was organised for the very next day. The appointment at UCLH would include a detailed scan, counselling and the invasive Chronic Villus Sampling (CVS) procedure based on the results of the scan and our consent. CVS would be able to tell us if there were any genetic/chromosomal abnormalities.

Once we’d explained everything, I was asked to get myself comfortable on the bed. I couldn’t. I was on the verge of an anxiety attack, I felt like I was about to pass out. I was sobbing and shaking and sweating. I was so scared of being scanned. It seems ridiculous and all I could do was apologise. The worry I’d been bottling up the last 12 weeks had come to the surface. The constant anxiety at every niggle – the worry that my symptoms suppressing. Was I losing the baby? The constant anxiety of every, single, toilet visit – inspecting the tissue incase theres any trace of blood. Apologies if this is *too much information*, but I’m just giving an honest insight to the daily struggles.

Eventually, I came round and shakily got onto the bed. The warm gel was applied to my tummy and the Sonographer went to work. Within seconds (felt like YONKS) she showed us our babe on the screen. Firstly, I was so SHOCKED at how large the baba was. It never, ever, ever, becomes less amazing. I was sobbing again and clenching James’ hand so tightly. The relief of seeing that baby, an actual child, on the screen, is unbelievable.  Secondly, the baba was bouncing about and flailing it’s arms so much – which was brilliant to see – but made it difficult for the Sonographer to get the measurements she needed.

 

 

The Sonographer managed to get the length measurements and gave us a due date of 27th July. The EXACT due date we were given with Eli. I mean, what are the odds of that?! The dates made my pregnancy 12 weeks & 6 days. A little further along than we thought!

The baby flipped the wrong way, then FELL ASLEEP, meaning the Sonographer couldn’t get the crucial NT measurement. She asked me to go for a walk and to drink some more cold water to try and get the baba moving about again.

 

 

 

 

 

 

 

 

 

 

 

 

So cold water was had and I waddled up and down this flight of stair no less than 50 times. We were called back in and I felt giddy this time – excited to get a second viewing of this wonderful babe. Except, the baby had moved into another awkward position. The Sonographer made me dance, tilted my body at odd angles, inserted a ‘soft play’ cushion under my knees and finally, made the bed go so far backwards I was slipped off, head first. Baby eventually played ball and it was confirmed that the NT measurement was low-risk, being 1.5m. Again, relief flooded my veins and I felt dizzy. (Although, that could have been due to the blood-rush from the bed being tipped up!).

 

 

 

 

 

 

 

 

 

So here I am. Week 14. Already with huge bump – yes there definitely is one in there – and feeling slightly less queasy, but still a lot tired.

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By sharing this (ridic long) blog post, it has been cathartic for me and if it gives hope to those who have been through loss, then that would make me really happy too. A new pregnancy, does not replace the one you lost. To have a million worries is normal and expected. Just look after yourself Mama, because I certainly am!

C
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UPDATE | Mr Eli has Talipes and Benign Paroxysmal Torticollis.

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Last week wasn’t a very nice week, at all.

Mr Eli has been suffering with his Torticollis more frequently since I wrote my epicly long blog post, Mumsnet: This Is My Child | Mr Eli has Talipes and Benign Paroxysmal Torticollis. We haven’t had any attacks with the accompanying sickness and drowsiness since Eli’s 1st birthday; it has been just his head tilting to his shoulder. He’s been teething quite badly (well, he’s been teething constantly since he was 8 weeks old…). His Torticollis tends to flare up more when he’s teething – or when he reaches milestones. We were so hoping he’d started to outgrow the attacks.

His neck had been tilting to the left side since 24th October – coincidentally, OH’s birthday. It finally straightened up, to a perfect mid-line by Friday 1st November, 8 days later. Then on Tuesday 5th November Eli’s head started to gradually tilt towards the right. He had been unaffected for just 3 days. By the evening of Wednesday 6th November, poor Eli looked horrendously uncomfortable and was very clingy. We had a physio appointment at the local hospital at 11am on Thursday 7th November. This would be the first time our physio had seen him so badly affected with the Torticollis.

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Eating an apple after breakfast on Wednesday 6th November.

On Thursday 7th November, Eli woke up crying. He never wakes up crying… apart from when he’s been severely affected with his Torticollis, and we’re due an attack.

I struggled to get Eli into his high chair, he was so off balanced and crying in discomfort. He barely ate any breakfast. His head was completely touching his shoulder.

I got us both ready for the hospital appointment; we walked the 25 minute journey and Eli was fast asleep as soon as he went into his pram. He NEVER sleeps in his pram when we’re out and about now. He’s too nosey.

When we got to the hospital he started to wake up with the lights and noises. As he gradually came round, I noticed his eyes weren’t quite right. They looked misaligned. I pulled him out of his pram for a cuddle and closer look. And as I did so, he projectile vomited. EVERYWHERE. He was having the first full blown Torticollis attack in 3 months. His eyes rolled back and he passed out into my arms. There were such lovely people in the waiting room, rallying round with tissues and water for us both! It’s so scary and upsetting when it happens. This is the first time it’s happened outside of our house too.

I then went into the physio room. Our physio was in a state of shock I think – she’s always seen him when he’s been unaffected and his usual jolly self. She admitted she never realised the extent of the attacks and began noting down everything that had happened, so she could write to the big hospital in Chelmsford for a referral to a specialist.

We know that there is no treatment or cure for Torticollis. It is something that Eli must grow out of, and should grow out of by the time he is 3. But I would still like him to be seen by a specialist.

He was sick a further 3 times in the physio room. The physio took a video of how the Torticollis was affecting him during his attacks; so we can use it as reference for any further appointments, where hopefully Eli will not be affected. OH and I watched this back on Thursday night together and it was very, very distressing to watch back.

Eli continued to be sick all of the day on Thursday – something that doesn’t usually happen. Eli had changed through 6 tops, 2 pairs of trousers and I used 12 muslins and 4 tea towels to clean things up. It was too chilly to not have his clothes on. I kept him nil by mouth… aside from syringing water into his mouth as he just couldn’t drink from anything else. He slept on me in-between the sickness. As he snored in my arms, I sobbed. I don’t think there’s anything that quite prepares you for feeling so helpless as a parent – not being able to make Eli better is just the WORST feeling in the entire world. For his last nap that day, I put him into his pram – where he slept for 90s mins.

When Eli woke up, he was chatting away. I pulled him up and out of his pram for a cuddle. He wanted to be down and straight away grabbed his beaker! He was almost back to his usual jolly self again – aside from his head was still tilting to the right, just not as severely; but it was a huge improvement on how it had been when he woke up that morning. It was almost as though the earlier part of the day hadn’t happened.

He ate toast, a banana and some biscuits for his tea that evening, along with 2 beakers of water. He went to bed normally with his bottle of milk.

He was clingy on Friday 8th November and looked very uncomfortable still. His balance was still affected by the Torticollis so he was very clumsy and couldn’t sit upright on the floor or in his highchair, choosing to slant to the affected side.

Fast forward a few days to today. Eli is much better now, sitting comfortably and back to his usual routine. His head is more or less perfectly straight in the mid-line again. After previous attacks, his head has straightened back during the course of the day. So this has been a lengthy process, this time.

Eli has an appointment to review his Talipes at the end of this month – which we’re so looking forward to as his feet are remarkable now. His referral regarding his Torticollis will be at the beginning of December, at the same hospital.

If you or your child has been affected by Torticollis, or indeed Talipes, please do get in touch. I’d really like to hear your experiences with both – Torticollis a rare condition and there is not a lot of information out there.

MM.

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Mumsnet: This Is My Child | Mr Eli has Talipes and Benign Paroxysmal Torticollis.

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I have been looking, with interest, at some of the posts that have been published during the This Is My Child awareness campaign via Mumsnet. We live our life day-to-day as normal. Because THIS is our ‘normal’. Eli is our first born and we know no different. But I suppose, our story is different. I’ve not really highlighted Eli’s Talipes or (recently diagnosed) Benign Paroxysmal Torticollis on my blog before. I have mentioned in a few posts about his Talipes. But nothing in depth. So here it goes!

Everything stems back to when I was pregnant. I had a very tough first few weeks, after a bleed we were told that the pregnancy might not be viable at a 5 week early-pregnancy scan and told to return in 3 weeks time; where we saw the most amazing and incredibly tiny flickering – a heartbeat! PHEW!

We so looked forward to that 12 week scan. The sonographer was lovely, but seemed concerned. Eli was jumping ALL OVER, I thought she was just having difficulty measuring up dates because he wouldn’t keep still. She then turned the machines off and said she was sorry to tell us that our bundle of joy had a “nuchal fold measurement on the cusp of high”. The exact measurement was 3.5 mm. This was indeed the cusp before they offer you further investigation. We needed to know. We were informed that a high NT measurement could mean a multitude of conditions, including Down Syndrome. This was heartbreaking. This baby was so wanted – we needed to know what we were facing. We had ‘counselling’ and I had bloods taken. The nurse then called University College Hospital London and told us they had a referral for the the very next day. We were told we could have a more in-depth scan at the Fetal Medicine Unit; where we would also be offered the option of CVS – which would indeed confirm any anomalies, through a horrendously invasive procedure. After the lengthy scan with several specialists, we were advised that we could either go ahead with CVS there and then, or wait… It had been picked up that there was a lack of nasal bone; another marker for Down Syndrome. Our world shattered. HOW WOULD WE COPE?! We went ahead with the CVS there and then. It was like a whirlwind.

The procedure was horrible. Just horrible. I had soreness and tenderness for a few days after. Not to mention the constant worry and stress of the risk of miscarriage. It was a very very hard time for both of us, waiting for the results. 3 weeks passed and we received a letter confirming that everything was spot on with Eli. He didn’t have any of the common anomalies that CVS tests for.  We were over the moon to say the very least. PHEW!

But this was not the end of our hospital visits. To cut the (very!) long story short – we had a total of 9 scans. Because of the NT measurement, Eli’s heart, organs and growth was routinely monitored. He developed fantastically. At the 25 week scan, it was found our baby had a degree of Bilateral Talipes.  But it was “extremely mild”. PHEW! It was corrective. We were happy. In the grand scheme of things.

Fast forward to almost 42 weeks pregnant, I was just a HUGE pregnant ball; unable to move, pretty much. That little boy was so so squashed up inside my petite 5 ft nothing 1″ frame. I was eventually induced. Which, shock horror was just the WORST thing ever. (Incidentally, I would never recommend an induction. Just bloody wait till the baby wants to arrive!). After 30 hours of labour, Eli was pulled out of me in an emergency situation using Ventouse. He was out, safe, at long last. PHEW.

Or so we thought.

We both immediately looked at his feets. Yes, they turned in, but probably weren’t half as badly affected as we were imagining.

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Again, fast forward to 8 weeks old. We’d not been seen by a specialist. Not even had a referral. At Eli’s 8 week check the GP who was head of the surgery, told me that his feet would ‘correct themselves when he learns to walk’. I wasn’t happy with that. We’d been massaging, manipulating and exercising Eli’s feets since birth, but at about 8-10 weeks had hit that brick wall. They weren’t getting any better. With the encouragement from @BexandMic on Twitter, who’s beautiful son Hugo was also born with Talipes, I kicked off at the Health Visitor. I got a referral to see a Physio about his feet. At the very first appointment our lovely Physio, Jenny, pointed out that Eli’s head was tilted to the left. I couldn’t understand what she was referring to, he just couldn’t hold his head up yet… She explained it looked like he had something called Torticollis. Possibly from being so squashed up during pregnancy, possibly from the trauma of being pulled out so quickly. I was given exercises to do with his neck regularly, after a week, his head was straight! I still to this day can’t believe we didn’t notice it. Looking back at photos, his neck is completely to his shoulder on every single one. There was still tightness after a few sessions with the Physio and more manipulation on our part. We eventually saw our consultant, Mr Tuite at Broomfield Hospital on 31st October. Eli was almost 14 weeks old. Worryingly, most children with Talipes begin their treatment shortly after birth.

We were devastated when Mr Tuite said that Eli would in fact require plaster casts to begin the correction process. Mr Eli was pretty mobile at 14 weeks old! He was used to his bedtime routine and his bath. We knew the casts were for the best though. We had to do it. We were told Eli had really mild Talipes, again, so would require 2 weeks worth of casts…

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6 weeks later Eli was still in casts. It was incredibly tough.

Being the age Eli was, we got a lot of stares. You could just tell people must have thought he’d been dropped and had broken legs. When people asked what had happened, they didn’t understand. They made me feel like the story I was telling was a pack of lies. It was just a horrendous feeling. We did however have luck on our side, in the fact that it was Winter when Eli was in casts. It wasn’t hot, he would have been so much more uncomfortable if it was! He spent a lot of time in long socks and snow suits! In hindsight, I wish I’d been more confident with his casts. Embraced them more. Decorated them, even. The casts did not hinder Eli in any way, he was rolling over in them and they were SO heavy and awkward. He kicked his legs up and down and bashed the casts to bits! He was so brave – he didn’t sleep at night, but hey, he doesn’t now either!

The Torticollis would occur when Eli seemed to meet new milestones. It wasn’t constant. It was irregular. His neck tilted for around a week when he started rolling, sitting up and crawling. But also seemed to coincide with teething too. We continued to repeat the exercises and manipulations.

Mid-December 2012 and Eli went into Ponseti Boots and Bars 23 hours a day. He got an hour “free” where we gave him his bath and he had a kick about afterwards. This was a huge relief. We could get back to normality somewhat. We hadn’t even thought about the visual  impact the Boots and Bar contraption would have on other people. After our journey, we had just accepted what we had to go through.

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In the coming weeks, I had an array of comments and conversations about his B & B’s.

“They’re funky boots” “Thanks! They’re to straighten his feet” “ohh… I thought they were just fashion accessories! I’m so sorry. Didn’t realise your son was ill”. “He’s not ill?”

“Does he have broken legs?”

“Does he have broken hips?”

“Is that a contraption to stop him wriggling away from you?”

“Do they make him taller?” “WHAT?!”

 Etc. Etc. Etc.

We had a lot of nasty glances. A lot of nasty sniggers. I’m REALLY not thick-skinned at all. Like I say, I’d completely accepted that this was his treatment. It did not bother me. This was normal to us now – this was part of our every day lives! Until someone pointed his feet out, or made that eye contact, that’s when I’d think. Then it would upset me. But, I needed to get through that for him. It was in his very best interests. He wouldn’t be able to walk without it! Had we just been too blasé about the entire thing?!

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Eli wore his B & B’s for 23 hours a day, for 6 months. Most children wear them for 23 hours a day for just 3 months, then hours are dropped throughout the day until they eventually just wear them at night time. To our surprise, Eli went straight down to just nights at our next review. This was just insanely cool. It was just magical seeing him so free. His feet look PERFECT! We’re so so pleased. We’re also convinced though, that Eli struggles at night time because of his boots and bar. He’s free all day long, then come bedtime he’s confined. He can’t move with ease. It’s uncomfortable and heavy. He will sleep for 2-4 hours at a time. Then I will need to settle him. There has been nights where I have taken his bar or both his boots and bar off, and he’s slept soundly. I’m sacrificing my sleep so he can walk. Easy decision. I do worry it’s not good for him, the broken sleep. But what can I do?!

At 10 months, he started pulling himself up and cruising around his play pen. I can’t tell you how proud we both were. It was just so special; still is! SUPER PROUD PARENTS!

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Not long after Eli started standing up, there was an afternoon where Eli was particularly miserable. Anyone who knows Eli knows he is a jolly boy. Barely cries. He’s only ever grumpy in the night! He was super grizzly. I put it down to teething. Then he projectile vomited. His neck was tilted. He went floppy in my arms, the colour drained from usual his rosy cheeks, his eyes rolled back and he seemed to pass out. I was beside myself. Naturally. I rang my OH who calmed me down. I’ve never been so frightened, it was seriously scary. This had happened previously, but I wasn’t there. Another bout of sickness and drowsiness and I let Eli sleep. We then recalled another time when he projectile vomited (he was never a sicky baby so could recall these occasions clearly). Within in a few hours, his neck was back to its mid-line straight position. Without any manipulation. We worked out that they all coincided with his neck tilting. Could the Torticollis be causing this?

I took Eli to the doctors – who were, USELESS. He googled Torticollis and told me what Wikipedia says… He said he’d seen just one other case of this and to go back to the Physio if I was concerned. Hell yeah I was concerned. We didn’t know if it was underlining with something else. I went to Portugal for 4 days. Eli had another bout of the sickness and drowsiness with the Torticollis. Again, his neck had straightened up itself by the next morning. It was all definitely linked.

I went to the Physio again after my trip. She was lovely, she explained that the condition was Benign Paroxysmal Torticollis. This variation of Torticollis comes in waves, or ‘attacks’. The attacks can last anywhere from minutes, to hours, to days and is accompanied by vomiting, pallorataxia, agitation, infantile migraine, unsteadiness of gait upon learning to walk, general malaise and nystagmus. All sounded about right. The periods in which the child’s head is tilted and other symptoms appear can last anywhere from a few minutes to a few days, with a frequency of anywhere from two per year to two per month. Looking back at the frequency of the attacks, we’ve found they seem to happen at the beginning of the month – every month, so far. It seems to surround teething, more than milestones now.

So now we know.

But what to do about it. Well, we’ve been told my several doctors and the physio (as well as Google) that Benign Paroxysmal Torticollis is something that Eli will grow out of, probably by school age.

His most recent attack was on 6th August, his 1st birthday. His neck didn’t straighten up quickly this time though, it’s taken a good 10 days this time.

The additional care that Eli requires surrounds his Talipes and his Benign Paroxysmal Torticollis. We don’t know when he’ll be out of his boots and bar, could be at his next appointment (28th August), could be when he’s 3 or 4 or 5. We also worry about relapse; there’s also cases where the feet have been over-corrected so they point outwards. We also do not know when he will have another attack of Benign Paroxysmal Torticollis, or the severity. I have to carry dozens of muslins with me, just incase he projectile vomits. I often worry it’s just going to come out of nowhere. I also worry about when he goes to nursery – are there people who are going to be able to look after him if he has an attack? Luckily, at the minute, I can work from home. But he will need to go into nursery sooner rather than later, for him to be able to socialise with children his age, more than anything else.

We currently do not receive any help, support or funding. I do know of people who have been granted Disability Living Allowance for their children with Talipes.

I’d absolutely LOVE to hear from others who have experiences with Talipes or Benign Paroxysmal Torticollis. The latter being quite rare, so not heard or seen anyone else who has had a child with BPT.

Would we have had it any other way? Ideally, I’d love to have Eli without all the discomfort and challenges he’s faced – of course I would. But my goodness me, he’s a brave boy. He’s SUCH a character. And frankly, it’s made me and my OH better people. We’re stronger. We understand.

Worry, worry worry – isn’t that what all parents do?

MM.

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Woe is me… I have SPD.

As I’ve documented over my recent Weekly Updates, I’ve been suffering with what I thought was just ligament pain. Albeit, with ‘just’ ligament pain I should have probably kicked up more of a fuss (I hate causing fuss and I hate fuss!). But since Saturday last week I’ve been in absolute agony with my coccyx. To the point of screaming to just roll over in bed. And I like to think I’ve got a high pain threshold! Needless to say, I’ve not slept since Friday night (and that was a rubbish night’s sleep anyway!). On top of this, I’ve had a cold… a proper cold. Every single time I’ve sneezed it’s felt like my undercarriage was going to rip out of me. Horrendous.

I’d reluctantly started taking paracetamol on Sunday as the hot baths and heat compresses had failed to ease the pain; and had the long Jubilee weekend to rest. But forced myseld into work yesterday. I cried on the train journey in, just limbering on the edge of the seat. I got to work and was completely drained. I felt emotional and tired out. I couldn’t sit in my chair at my desk. As I’ve mentioned before, I’m the first pregnancy in my department, EVER. So have found it difficult when having even just standard Midwife appointments – people continuously asking why I’m at the Midwife so much. (As if I need to explain my medical situation anyway! I would NEVER ask a colleague why they’d visited the Doctors, would you?!). So when I’d been suffering with the aforementioned ligament pain, I found that people were more or less confused or found my blatant explanation “distasteful”. Goodness knows why! So of course, when I got to work yesterday in obvious pain, explaining that my coccyx were killing me didn’t go down all too well. I don’t think people understand just how sodding painful it is!

So I thought SOD IT. And got myself to the doctors at 5pm. The Doctor examined me and diagnosed me with SPD (Symphysis Pubis Dysfunction). I’ve been referred to a Physio (not sure how long it will be before I get my appointment mind!) and has given me a cream to rub onto my coccyx and upped my paracetamol intake. He did offer to give me Codeine aswell, but refused this as it can affect the baby. He also gave me a sick note. My first sick note. So close to the end of work, before my Maternity Leave begins on 22nd June… so I’m quite disappointed with myself. I’ve never ever had a sick note. I didn’t even know what to do with the damn thing.

So that’s that. I’ve had my first day off work today and literally slept the entire day through. The paracetamol and sitting on a hot water bottle has helped.

I just need to keep on top of resting and relaxing. This is definitely my body’s way of telling me to SLOW DOWN.

Has anyone else suffered with SPD? What are your coping techniques? Did you get better post-partum?

MM.