Purplegerberas's Blog

A rambling collection of my thoughts about life, my children and crafty things

Calmly being busy

I’m caught again in a mad crazy time of too much work and too many other commitments. February is shaping up to be a horrendous month that I am mentally willing to pass quickly. I dream of sleeping through it (but still meeting all of those commitments and obligations!) I have some very tight deadlines on a work project as well as two essays to complete for my masters that are due in next week. To add to the fun I found out last week that my job is at risk of redundancy as part of a reorganisation at work.  Whilst I’m confident of having a job at the end of the process I’m finding it all a bit unnerving. The actual change in job isn’t worrying me (I’m looking forward to a challenge), I’m more worried about the prospect of having to return to full time hours and the impact on us as a family.

On Thursday I lost the plot. It all got to me and something finally snapped. Last weekend I’d been criticised by someone and been given a list of everything that she felt I ‘should’ be doing. Its very different from both my ‘should’ list and my ‘must’ list. It came back to the same problem of me being deemed the most responsible person in the family so organising all other family members falls to me.  Eventually I handed all of this over to Steven. He is just as capable as me and whilst he prefers to sit back and let me sort it all I simply cannot any more.

Yesterday I woke up in a surprisingly good mood and decided to make the most of it. Rather than killing myself with stress I’ve decided to take a step back and calm down. I will tackle this mad month in a relaxed calm way and will look after myself in the process. We went to an indoor play area in the morning – the kids got to run around whilst I made the most of the free wifi, caught up on a couple of jobs and enjoyed a cup of coffee. In the afternoon the kids had a choice of what do to and they asked to make a carrot cake. We had a great time but got into trouble as we were singing too loudly and woke Steven up.

Rather than panicking, over multitasking and actually achieving nothing, I’ve got more done in short focused bursts and have now completed everything on my list for the weekend. I’m off to the cinema later (Les Mis – again!) to end the weekend feeling like I have done something worthwhile for myself.

I think I’m getting the hang of this personal resilience business.

 

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CHD Awareness Week

This week is CHD Awareness week and Samuel’s story has been featured on Stefanie’s blog at When Life Hands You a Broken Heart. Each year to raise awareness Stefanie has a guest post telling a story highlighting the most common birth defect. Today is my turn!
Samuel was born at full term after a good pregnancy and a fantastic labour (never thought I’d say something like that). His older sisters arrival had been more traumatic for me so I was relieved and feeling very relaxed at the arrival of our second child. We had had a quick discharge from hospital so our GP visited us at home the following day and a full newborn examination did not reveal anything unusual.
Our daughter Eloise had been a ‘good’ baby – very content and quiet and we had joked many times that we were not going to be as lucky second time around but surprisingly we were, if not luckier. Samuel was very quiet, rarely cried and slept beautifully. My only complaint with him was his feeding. Although I was bottle feeding it was difficult to get more than an ounce of milk into him at a time. We would have to dedicate an hour to feeding him and it often became a battle to keep him awake or get any milk into him at all.

 

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When he was two weeks old I took him to see our health visitor who quickly dismissed my concerns. Without looking at Samuel she simply said that she sensed some anxiety and I ‘needed to learn not to put my mental health problems onto my baby. I was devastated by this reaction. Was it all my fault? I went home and cried for the first time since he was born. Over the next two weeks I saw the health visitor twice more and again was told there was nothing wrong with him. The last occasion was at baby clinic. I’d gone armed with a list of how much milk Samuel had had over the previous few days. I knew it wasn’t enough. I showed her the list, Samuel was weighed and he had put on weight. I was then told if my list was correct then ‘he wouldn’t be putting on weight would he?’ Again, I was left upset at the realisation that they simply did not believe me. His breathing appeared fast at this appointment and they felt that he had a cold and advised me to see our GP.
We went to the doctors that evening and soon found ourselves on the way to our local hospital. Here they felt he had bronchiolitis and decided to keep him in overnight for observation. We were asked many questions about his feeding. The doctors believed me about the poor quantities but asked repeatedly why I had failed to do anything about it. This added to my upset as I’d spent two weeks raising concerns without anyone taking me seriously and now felt I was being seen as neglectful. Overnight Samuels oxygen saturations deteriorated. They were low and the machine was blamed (they couldn’t possibly be that low). A second machine was tried and that was ‘broken’ as well. A third machine was found and it gave the same low reading. He was started on oxygen but the machine seemed to get the blame rather than realising that his sats were that low.
The ward round the next morning brought a new team of doctors and one thought he heard a slight heart murmur. We were reassured that this was probably nothing. An echo would be arranged and we shouldn’t worry about it. Later that day Samuel went for the echo and the rest is history.

 

It was found that he had critical aortic stenosis, was in severe heart failure and was actually very seriously ill although at that point you wouldn’t really know to look at him. The following hours passed like a traumatic dream. Samuel arrested, he needed to be ventilated but his heart failure was too bad. He was put onto CPAP and we were told that we simply had to hope for the best. They struggled to find an intensive care bed for him. The closest one was in central London 70 miles away. We had had heavy snow that day and during the evening severe fog had set in. A helicopter transfer was not a possibility and London was deemed too far – Samuel was unlikely to survive the journey. Eventually a bed was found at Oxford which was closer. He was transferred there but again we were warned that there was a possibility that he would die on route. It was a slow and difficult journey as the weather was so bad. I still wonder now how I actually managed to drive Steven and I there in one piece. I remember I spent most of the journey wondering how we would afford to pay for his funeral.
He made it there safely though with no drama. The following day he had a balloon valvoplasty and returned from theatre as completely different baby. He cried, he was awake, he smiled, he made noise and he would down a complete bottle of milk in about 15 minutes. He was discharged home on Christmas Day.

 

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Since then we have been lucky. Three years have passed and Samuels health in general has been good. He does need a valve replacement but at present we’re watching and waiting for that time. His heart function isn’t perfect but he copes well with it. Winter and colds present problems but during the summer months he appears completely normal. His heart doesn’t seem to hold him back and he has grown into a very happy and bright little man. My worries about CHD always looming and dominating our lives have gradually faded.

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It took me some time to get used to the idea of Samuels CHD and learning to cope with the uncertainty of the future and also the idea of facing major heart surgery. I had a huge amount of anger over his delayed diagnosis. I had felt dismissed and made to feel at fault over his condition. As a nurse I was horrified at myself that I failed to notice my own child was in severe heart failure. I also know that had he arrested at home his chances of survival would have been almost non existent. Samuel’s development is normal and we are fortunate that he appears to have no long term effects of the heart failure and arrest. I found that there was a lack of information on CHD. Despite being the most common birth defect there is such little awareness. I knew nothing of CHD myself. A trip to my local library revealed three shelves dedicated to books on ADHD but not a single book on CHD existed in the entire county. The early days were very lonely with a struggle to get support close to home. Online forums have helped my sanity many times. A positive aspect of CHD is being part of a caring online heart community.

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In 2012 in the UK the Children’s Heart Federation launched the ‘Think Heart’ campaign [http://www.chfed.org.uk/home/campaigns/thinkheart/]. This is a simple tool aimed at both parents and professionals to raise awareness of the symptoms of an undiagnosed heart defect. Information, leaflet and posters are being distributed to midwives, health visitors and doctors to help bring attention to the commonest birth defect. Parents are also spreading the word at parent groups, amongst friends and giving out leaflets and posters where possible. I’m very supportive of Think Heart and also the pulse oximetry campaign. I believe both would have made a huge difference to Samuel. He may have been diagnosed earlier preventing an arrest and that uncertain hospital transfer. I may have had the courage to have seek a second opinion earlier rather than question myself and my mental health We would have been saved much trauma and anguish. I’ve learnt since that in the UK there has been a huge emphasis on post natal depression for health visitors. I believe that this was at the detriment to my son – his physical illness was interpreted as my mental health problem. Both pulse ox and Think Heart are really simple concepts that increase awareness of CHD to both professionals and parents. For a very small cost outlay lives can be saved, long term disabilities may be prevented and parents can be saved trauma. In the UK pulse ox is being examined with a strong possibility that it will become a standard part of the newborn examination this year. The professionals are doing their part, as parents it is up to us promote, share and shout about Think Heart and place it higher on everyone’s agenda.

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Self responsibility

I’m struggling with people not taking responsibility themselves and the impact that it then has in turn on me.

I’ve often fallen into the trap of being too nice, too dependable and as a result people put upon me and I end up with far too much to do. Over the last year I’ve become more assertive and learnt to tell others to sort their own issues out. Don’t get me wrong, I’ve not turned nasty, I’m just realistic. An example came this week. A colleague emailed me with ‘can you find out the code for xxxx incontinence pad’. As I opened up google it hit me – if I’m capable of searching on google why doesn’t she do it. I stopped and replied with a polite please look for yourself. Maybe I need to add let me google that for you to my email signature.

I’m now caught though in a balancing act – at what point do I help to benefit myself. One of our childcare providers currently isn’t registered with my childcare voucher provider. We first discussed this in July and she said she would register with them. I backed this up in September with the details of the voucher company and still now she hasn’t registered. Our last conversation about it a few weeks ago was along the lines of ‘I don’t understand what to do’. We’d had the same conversation before. I’d explained, as a parent, I do not know what she has to do but I had given her the phone number of the company. If she phoned them I’m sure they would explain it. Now, at a time when a new bill is due she still hasn’t registered.

The frustrating problem is that we are well catered with childcare vouchers. I can easily pay using this. Spare cash instead is not so easy to find at present. I feel strongly that as a person running a business she should be taking responsibility and registering for something she promised months ago. Why should that expectation fall on me as her customer. We’ve now reached the stage where we have decided not to use her for childcare unless the voucher situation is resolved.

The change in childcare arrangements hasn’t been easy. Steven is coping on 5 hours sleep and we’ve just eaten our tea at 10pm. Not ideal and I don’t feel it’s a long term solution to do this each week. I have huge resentment that we are having to do this simply because someone cannot register on a website. There aren’t alternative arrangements that we can use other than working it out between ourselves.

So, am I cutting off my nose to spite my face? Do I carry on scraping together cash that I don’t have when I have a very healthy voucher account which has too much money in it? Do I take responsibility for someone’s business when they are a grown adult and just as capable of making a phone call as me?

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Positive steps for the New Year

A week into the New Year and I’m feeling settled and positive ready to tackle a busy year.

We have a number of plans, nothing concrete but I’m waiting on the outcome of a few other things first.

I’ve decided to be more active to help the weight loss but also my sanity. I read about ecotherapy the other day. A very simple concept that being outside, doing something improves your both physical and mental well-being. Something so simple but another thing on that list of good advice that I generally ignore. I’ve made the effort this week and we’ve been out and about when possible. I’m even debating buying a season ticket for the car park so we can be country park regulars.

After all of the recent rain it has been very muddy

And the kids have got their money’s worth out of the wellies they got for Christmas

Samuel has also suddenly got better at walking a distance. Before Christmas he was firmly back in the buggy or asking to be carried after a short distance. This had led to lots of contemplation over whether it was his heart restricting him or Samuel just being awkward. This week has shown that its him. We’ve walked for over an hour at a time with out any moaning or requests to be carried. The test will be walking to school this week but I’m feeling optimistic.

I’m trying to increase the average number of steps I do each day. I’d struggle with getting a set target each day so I think its easier to simply say increase my average daily steps. I’m not feeling too good this weekend with a cough and cold so rather than heading to bed this evening I went for a walk on my own to clear my head. My aim is to do this more often.

After weeks of struggling with my workload I’ve had a catch up with my masters. Its helped my conscience more than anything. I’ve booked lots of study days in my diary and intend treating them as sacred. I book them in my diary and normally its the first thing to get cancelled whenever work gets busy. After long discussions about this with various people I know that my studies are just as important as everything else and I need to consistently give it the time it needs.

Along with this I’m tackling my organisation at work. At times I’m too reliant on a million post-it notes and my overworked brain to keep track of everything. I multi-task in a very dodgy way to the extent that I feel like I have ADHD at times.  I’ve created a new plan of attack starting tomorrow. To do lists in one place, not having my emails open all the time, planning my day and focusing entirely on the most important task of the day first. I’m giving it a weeks trial and will see if it makes any difference.

 

 

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