The Curse of the Blister

First, let me start by saying 'Thank you' to all the kind comments of support we've had since starting this Blog. It's really amazing to know that people are genuinely interested and are even surprised that Clubfoot is even a thing anymore. Just goes to show how incredible the NHS and medical science is.

Well, it's been a tough old week for poor Barney this week. 2 weeks ago I noticed a small patch of redness on his heel which gradually developed into a small blister over the course of a few days. I was desperately trying to stop it getting worse but there's very little you can do other than ensure the boots are perfectly fitted. It seems to go against your better judgement, but in fact the tighter they are the better, as you reduce the amount of movement and friction. But by Wednesday last week it was a proper blister. One that makes you wince just looking at it.

So I took him to his physio who said to ask a pharmacist for a dressing - nothing too bulky but offered some cushioning for comfort. The dressing the pharmacist suggested was Compeed plasters. Great, I thought, soft, cushioned, not too bulky and fairly cheap. But after 24 hours, Barney had managed to dislodge the plaster and, in the process, removed any scab that had formed, leaving a pretty yucky looking heel. As a result, I slightly panicked and put another Compeed plaster on.

Well, what ensued was 48 hours of screaming and tears and pain. I stupidly thought he was protesting against the boots being back on seeing as he'd had 12 hours with them off whilst I was sorting the plaster situation. However, after 2 nights of no sleep and a baby that hadn't eaten or paused for a breath between screams, I decided to take off the plaster to see what was going on.

Oh. My. God.

I cried. Actually balled my eyes out. My poor baby had a hole in his foot down to the bone. You'll be pleased to know I won't be adding a photo, it was just too gruesome!! All I could think of doing was taking him down to A&E to see a nurse pronto. What was incredible was the fact that despite his foot was bleeding and obviously in pain, as soon as the boots and plaster came off, I had the biggest smile and giggle from our little SuperStar. In all honesty, the staff at the hospital were horrified. Clearly babies don't get blisters so it was a bit of an odd one for them to work out the best course of action.

Which actually got me thinking. Without the physio's or Barney's consultant, I was the expert. Suddenly I was in hospital being asked questions and being asked to make decisions based on his condition as no one else knew anything about Clubfoot and the Ponsetti treatment. You know when you're an adult and you don't really want to be and you kind of wish there was a more 'adulty' adult than you?? Well that's how I felt. My little baby, lying on a hospital bed, blood pouring out of his foot, and doctors and nurses looking at me for guidance. No thank you. I think I'll just be curling up into a ball right now.

But I made the decision that I would rather the boots off and let him heal with the possible risk of his foot relapsing. Urgh, mum guilt to the max! How can I let his foot go without a boot? All this hard work and suddenly I'm letting him have nothing on his feet.

I really thought that was the end of it, just wait for it to heal, pop the boots back on and 'hey presto', it's like nothing happened. Well the dressing they put on is called DuoDerm. It's a great dressing as it's incredibly thin and has properties across the entire surface to aid healing. The idea is that the wound fills with fluid to aid the entire process and you leave the dressing on for a week. However, 24 hours later and there was so much fluid, the dressing came off leaving a right mess!

Back to the hospital and, luckily, it was a week day so could be seen by his team. It is now washed and re-dressed and I am armed with sterile scissors and enough dressings to start my own hospital. And now we wait. If it doesn't heal quick enough, there's a chance he'll have to be re-cast again which actually isn't such a bad idea. At least his foot will be where it needs to be and his heel will have time to get better. I'm currently a paranoid wreck though....his foot really does look as though it's turning. But then again, he's done amazingly well to only be 11 weeks old and have a completely different foot already. Maybe I should just chill out. This 'mum' lark is full on. At the end of the day, it's just a bloody foot and he'll get there, we'll make sure he does.

Barney, we're trying our best. I'm sorry you're in pain and I'm sorry you are constantly frustrated. Trust me when I tell you that my heart is feeling your pain, I'm with you every step of the way. But keep giving me those wonderful smiles of yours and I'll keep going as best I can.

The Magic 7th Day

Wow. All I can say is 'Wow'.

I've got my Barney back. From screaming for 5 days solid, to 2 days of constant sleeping, Barney is back to his happy, smiling self. Phew.

How crazy is that? Nothing has changed, the boots are still as tight and his skin is red raw but it's like a switch that has all of a sudden stopped him caring about the pain and frustration going on at his feet. Just goes to show how quickly you can make something 'normal' and routine in a baby's life, his resilience has astounded me and has generally added to the list of what makes babies fascinating. I can finally breathe a little sigh of relief.

**For all those mums and dads yet to embark on this journey, I hope this makes up for the scaremongering previous post!**

So what have I learnt during the first week of full time boots and bar:

1 - I miss the casts. I never thought I'd say it but at one point last week I considered asking if he could be cast for the next 12 weeks to save my sanity. Those weekly casts now seem like a dream.

2 - You'll obsessively watch a small hole. In each boot there is a small hole either side of the heel so you can check that the foot is completely flat and not causing any rubbing. Well, I couldn't stop checking and convincing myself that I could see a gap.

3 - You'll be crap at putting on the boots. There really is an art to getting these damn things on. Not that it's particularly hard to do but there really is a knack in order to not be so 'fingers and thumbs'. It has taken me about 6 days to really grasp what hand should do what in order to get a perfect fit. And I still check the bloody holes!!

4 - I can now officially call myself a sock expert (a socxpert......no?). I've never looked at so many socks in all my life. Socks have always just been socks. Plain black are my normal go to. Maybe a bit jazzy for Poppy. But my word, I can now judge a sock by it's grip, ribbing, material, thickness, stitching and length in under 10 seconds. And, in conclusion, you need a sock that:

• doesn't necessarily have grips because the bottom of the boot is rubber,
• has no ribbing as this will leave marks,
• is a soft material,
• a thickness that you can replicate with every boot change so that you get the same tightness on the strap,
• has no harsh stitching on the inside by the toes (if they do, you can always turn them inside out)
• is long enough to go to the knee so you can turn them over the top of the boot to avoid slipping

Now, on all the support sites, people rave about Primark and Asda socks but personally I find them very thin, too ribbed and have harsh stitching at the toes. But people have had great success with these so I have bought a few pairs as a back up, plus they're really cheap. At the other end of the scale, you have the socks made by the medical provisions company C-Pro, but at £15 for three pairs of socks plus £5 postage, it's a pretty steep cost. So I settled for socks from The Little White Company, £6 for 3 pairs. They're made from terry toweling, incredibly soft and long and fit very well. They're possibly a bit too thick but I'd rather that than too thin. The only thing I will say for certain is that you need more than 3 pairs unless you've got a tumble drier and do a load of washing every single day. So, yes, socks are my new obsession as you can probably tell.

5 - One hour becomes the most magical part of the day. Barney is allowed one hour off each day from wearing his boots and we have decided to do this between 6 and 7pm each night. This allows for him to have a bath with Poppy and also get used to having the boots put back on before bed (seeing as this is what he'll have to do for the next 5 years). Seeing his face as you undo the first buckle is the most amazing sight - you can just see the tension leave his body. That hour goes so incredibly fast but just enjoy it. Tickle those toes, kiss those wonky feet, massage those misshapen calves.

And finally, 6 - I'm not as tough as I thought. This week really broke me. I'm a pretty tough cookie, have been through a lot in my 28 years and always thought I could take on anything that was thrown at me. But seeing your little baby helplessly screaming and sobbing for a constant 5 days really kicks you where it hurts. I didn't eat properly and I barely slept. I felt like the worst mum in the whole entire world because I couldn't get my baby to stop crying, I couldn't take the pain and frustration away from him, I couldn't play with Poppy or read her a book or put her to bed, I fed her crap in and sat her in front of the TV so I could feel slightly in control. I was really shit. I'm very good at looking like 'I've got this' but I really haven't. And I really didn't have 'it' last week. BUT, I'm out at the other end looking back and so what if Poppy ate crap and we all looked like crap? So what that my house got close to contracting MRSA? So what if I wore the same leggings all week (and, yes, they are still my maternity ones) and survived off chocolate chunk shortbread? I did it. I got through it.

So there you go. One week down in full time boots and bar, 11 to go!

'Boots and Bar' may be the end of me

So Barney turned 9 weeks old yesterday and celebrated by spending his 3rd day in his corrective Ponsetti Boots and Bar. This is the stage after being in a full leg cast since he was 5 days old. Now....I know I've not really explained the process he has to go through but I promise to Blog in more detail about the ins and outs. His Boots and Bar (or B&B) were fitted on Tuesday and he basically has to wear them for 23 hours a day for the next 3 months.

Easy, I said. What's 3 months?? It'll fly by.

WRONG.

We're at Day 4 of full time wearing of B&B and I'm not too sure I'll be around to see out the week let alone the 3 months. Wow, it's hard work. Just look at these things....

The poor little guy has screamed since having them fitted, his sleep has been affected and he is a shadow of the happy, contented little baby I had. My baby boy is really suffering.

I can't begin to describe just how tight these boots are. It's like I'm torturing him every time I put them on, he looks at me as if to say "Come near me with those boots and I'm leaving you. It's over between us woman. You may have boobs full of milk but quite frankly I'll take formula if it means I can get some distance between us". And he cries and I cry. And I force him into these boots and watch him sob.

But, we are ONLY Day 4 and I've had many mums on support networks telling me it gets better from a week onwards. So only 3 more days to go......ARGH. I need sleep, I need a shower, I need to stretch my back out of it's contorted shape from rocking and carrying for 20 hours a day. Added to this the general day to day needs of a 9 week old baby and a 2 year old toddler - I mean, they need feeding and watering and the like. If it wasn't for CBeebies I may have gone grey or insane or both simultaneously with smoke coming out of my ears.

And don't even mention the fact that his 8 week immunisations were this week too. I really know how to piss off a baby. As I sit here thinking about how awful it's been, and I mean truly awful, he's actually asleep. ASLEEP. Proper sleep in a cot and has been for nearly 2 hours. So does that mean we're seeing the light or does it mean he's just so exhausted from 4 days of crying that he's given up??!!

For any mum's who are yet to get to this stage....I'm so sorry for freaking you out. And any mum's who have been through this, please tell me it gets better? I really hate wishing my little man's life away but November couldn't come quick enough for me right now.

Just to prove it is the boots causing him to be a sad little boy, here's a pic of him having his hour free time yesterday....

Onwards and upwards I'm sure.

Sam x

My Little Barney

Meet Barney. 10 little fingers, 10 little toes. Deep blue eyes. A smile that melts me. And the tightest grip on my finger.

Barney was born at the beginning of June 2016, completing our family and making our daughter, Poppy, the proudest big sister ever.

However, Barney was born with a condition called Congenital Talipes Equinovarus.....or Clubfoot to those of us without a medical degree. Fixed Talipes in his left foot and Positional Talipes in his right.

I've not really told many people about his feet, and I'm not too sure why. But today, as he screams for the 24th hour in a row (well not quite but it's not far off!), I feel the need to embrace my baby's feet for all the glorious imperfections there are as they're shackled in corrective boots far too tight for comfort. This is my outlet. My way of saying 'It's OK, It's only feet' and giving myself a big kick up the arse because it's not my fault. It's not his fault either. (It's slightly Dad's fault seeing as it's his genes but we'll try to forget about that!).

It's a journey, it really is. One that started at our 20 week scan and will finish who knows when. But it's not a straight forward journey. It plays with emotions, with family dynamics, with bonding, as well as being just medical. And I hope you can follow our journey too. I don't have all the answers and I am far from perfect but I hope that maybe our journey could help someone else's journey...not necessarily with Clubfoot but with the complex life that is parenting.