Jessica and Sophie playing in the snow in the garden

The truth about winter and my heart child

Winter can be a challenging season for us. The cold weather brings an extra layer of worries with a heart child. One of the first things I notice as the weather gets colder is the change in Jessica’s colour. She is so much bluer in the winter than she is in the summer. Whilst her colour does improve when you warm her up, that blueness can be quite unnerving! I find myself constantly watching her colour, constantly trying to judge how long we can stay outside in the cold weather, whether she needs extra layers or to come inside.  Assessing how long it takes for her to pink up again, and whether I need to worry and seek further advice.

 

Winter is a time when my worries as a heart mum are a little more acute than normal. I am conscious of the cold weather and the difficulty it brings with trying to keep Jessica warm. Then there are also the coughs and colds and minor illnesses that come with winter. Minor illnesses that can sometimes have a big impact.  Worrying and assessing and monitoring while trying not to limit too much – to let Jessica have fun, get out and about and enjoy herself – whilst always being aware of the things I need to watch out for.

Jessica bundled up in coat, hat and gloves in the snow

Feeling the cold

Jessica goes very blue when she is cold. This can be quite unnerving, especially for school and preschool when they encounter it for the first time!  Her hands and feet can get especially cold – in summer they tend to be quite cool; in winter, they can be like little blocks of ice on the ends of her arms and legs!

 

We’ve become experts at layering clothes to help keep her warm – thermal vests over the top of a normal vest, tights under trousers, socks over tights, hats, gloves, scarves. She has thick fleecy pyjamas and socks for bedtime. On cold nights, she will often ask to wear her dressing gown too and have an extra blanket.  The heating is on constantly if she is at home – although thankfully it’s rare for us to feel the need to have the heating on overnight.

Jessica and Sophie in the garden in winter

For some heart children, the combination of poor circulation and less movement when sleeping can cause them to get leg pains, especially in the cold weather. Jessica has never complained about this but there are times when she seems to have restless legs and I do wonder whether this is due to her poor circulation.

 

Whilst Jessica does have outdoor time with her classmates during the school day, it is more difficult for school to keep a close eye at lunchtime when all the other children are outside and so she tends to stay indoors more then. Thankfully she has a friend who is also a heart child so the two of them can be inside together.

 

The cold weather also means that Jessica can get breathless more quickly. This is something I have noticed when we are out and about.  Jessica will often tell us that she is “running out of breath” and needs to stop. This happens more often on winter walks than on summer ones.  Getting breathless quickly also means that she isn’t really able to run about much and warm up that way.

 

Winter bugs

Winter is also the season for coughs, colds and various other bugs. A whole host of illnesses that can hit hard and land Jessica in hospital. Nearly all of our unplanned hospital admissions have been during the winter months. Jessica goes to school, to ballet, to Girls’ Brigade; she goes out and about every day. I cannot protect her from all the germs that are out there although I am always aware of what is currently doing the rounds. At this time of year, when the NHS is under its biggest strain, I worry about what illnesses will hit her over the winter months and whether we will be lucky enough to get through it without being admitted to hospital.

From the mouths of babes #61 - A stay in hospital - Little Hearts, Big Love

Fortunately most of the time Jessica seems to get through coughs and colds without too many worries – even if they do often linger for a bit longer with her. She’s good at self-limiting too – at letting me know when she’s cold or breathless or needs to come inside. Aware of her own limits without letting them hold her back too much.  As she gets closer to needing her next surgery, those limits will become more restrictive for her. For now, I’m thankful that on the whole, she copes well with the cold weather and the challenges it brings.

 

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14 thoughts on “The truth about winter and my heart child

  1. Kim Carberry

    Aww! Bless her! She is such a little trooper.
    Becky my teen suffers in the winter. She really feels the cold and her lips turn blue….I didn’t know that about leg pains….She is always complaining about aching legs. I just put it down to the fact that she does a lot of walking to and from school. We’re at the hospital in a couple of months for a checkup I will ask about this.

    Reply
    1. Louise Post author

      Thank you Kim. Sorry to hear that Becky also suffers in the winter – it will be interesting to find out if the aching legs is related to her heart x

      Reply
  2. Donna Giles

    Louise – you could be describing me as a child. As I said in my blog for LHM, in primary school I read every book in the library.
    Keep letting her join in with all her activities, whilst looking out for her. Trying to keep the balance is the hardest part – you are doing a great job.
    Hope Jessica stays well this winter xx

    Reply
    1. Louise Post author

      Thank you Donna. It is hard to keep that balance – thankfully she’s very good at self-limiting which helps a lot x

      Reply
  3. Plutonium Sox

    Oh bless her, she sounds like she’s so sensible and knows her limits and how to help herself as best she can. I do hope she manages to get through the winter without any illnesses.
    Nat.x

    Reply
  4. Mel

    Little poppet. Seeing your child turn blue must be pretty distressing and I can imagine how scary it would be for whoever is looking after her. I would want to wrap her in cotton wool if I were you and I admire you for being so relaxed when we went out on a coolish day. xxx

    Reply
    1. Louise Post author

      Thank you Mel. That blueness can be quite scary – especially the first few times. I’ve learned now when to get alarmed by it though. She copes well with colder weather as long as she is well wrapped up – she had a few layers underneath her puddle suit when we went out that day so I knew she would be ok! x

      Reply
    1. Louise Post author

      Thank you Sarah – she copes very well on the whole. Fingers crossed we can keep out of hospital this winter!

      Reply
  5. Lucy At Home

    Oh this must be such a worry for you all. My eldest has a complicated health condition too so I totally understand the constant checking and assessing whilst simultaneously wanting to let them be free and enjoy themselves.

    I hope that you have a hospital-free winter. It’s great that she has a friend who stays inside with her at playtimes – I bet that makes a big difference to both of them. What a brave little girl you have #PoCoLo

    Reply
    1. Louise Post author

      Thank you Lucy – it’s hard to get that balance right isn’t it? I hope that your eldest is doing well x

      Reply
  6. Carly

    I can totally empathise. Whilst my son has a very different heart condition, meaning he is more likely to overheat, he too gets struck down with repeated chest infections and trips to hospital. We are awaiting his surgery due on Wednesday and I am trying to keep him in a bubble. Worst of all I have come down with a winter stomach bug and am desperately trying to keep him away whilst getting well enough myself to take him for his operation. Balancing health and sensibilities with enjoying life can be tricky with a heart child. Wishing you and your family a healthy 2017 xx

    Reply
    1. Louise Post author

      I hope all goes well with your son’s surgery on Wednesday Carly – what an anxious time it must be for you waiting. Hope he has managed to avoid the stomach bug too x

      Reply

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