Purplegerberas's Blog

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

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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Think Heart

Next week is Children’s Heart Week and the Children’s Heart Federation are running a series of events to increase awareness of congenital heart defects.  They are also going to promote the ‘Think Heart’ campaign which encourages both parents and professionals to be more aware of the possibility of a congenital heart defect in the first weeks after birth. Roughly half the children born with a heart defect will be sent home without a diagnosis.

Think Heart provides an acronym to help raise awareness of the symptoms of an undignosed heart defect

Heart rate – too fast or slow? (normally 100 to 160 beats per minute)

Energy & Feeding – sleepy, quiet, floppy, too tired to feed or falling asleep during feeds?

Arterial Saturation (oxygen levels) – not enough oxygen in the blood? (normal oxygen saturations 95-100%)
and Appearance: a pale, waxy, dusky, blue, purple, mottled or grey colour (not enough red blood)

Respiration – breathing too fast or slow? (normally 40-60 breaths per minute)

Temperature – cold to touch – particularly hands and feet?

More information at Tiny Tickers

In hindsight looking at the symptoms, Samuel was showing us that he was clearly having problems. I’d approached my health visitor on a number of occasions as I was concerned and each time was told that I had anxiety issues and was putting my problems onto my baby. I think had I known more about the symptoms of a heart defect I would have had the  courage to seek alternative help much sooner.  By the time he was diagnosed aged 4 weeks, he was in severe heart failure and had a cardiac arrest. We know that we are lucky that he arrested in hospital, had this happened at home it is likely that he would not have survived.  We are also lucky that Samuel has suffered no long term ill effects from that undiagnosed period.

This photo sums up our first 4 weeks with Samuel – constantly asleep…..

And immediately after his valvoplasty he was a totally different child….

On 14th May the Children’s Heart Federation is holding a workshop in London to discuss the Think Heart campaign and also the use of pulse oximetry testing at birth (something else I feel would have prevented us going through a lot of trauma).  Following that is a parliamentary reception to raise awareness amongst MPs of the importance of early diagnosis of heart defects.

I’m attending both and looking forward to a trip to London on my own! It’ll also be strange attending a healthcare meeting wearing my parent hat and not my continence manager one. I’m also looking forward to going inside the Houses of Parliament – my inner political geek is thrilled. Sadly though no photos can be taken inside – what happens if I bump into Andrew Marr or Nick Robinson?!

My main feeling with both Think Heart and pulse oximetry is that they are not rocket science. They are simple, cheap, accessible and effective ways of detecting heart defects at a crucial stage.  I strongly believe that both would have made a huge difference to Samuel’s condition. It would not have reduced the need for surgery but it would have saved us all the trauma of him being critically ill and coming so close to losing him.

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Busy writing (honestly not panicking……..much)

I’ve had a busy few weeks hence my lack of posting.

I’ve got my first essay for my fellowship due in next Monday and it’s reaching a crucial stage. I’m past the halfway mark and not entirely happy but oh well, it’ll be handed in in some form or other next week. My brain is already trying to preserve itself for the next one which follows just a few weeks after.

I’m fed up with work. There’s lots of bickering and stressing between various team members and my attempts to sort it last week went disastrously wrong. I felt totally useless and like I had totally read the whole situation wrong. I’m struggling under the sheer quantity of work and adding the essays and fellowship study days into the mix hasn’t helped.  I’ve had a headache for 8 days (today is the first headache free day 🙂 ) and now have a cough and feel generally rubbish. I had yesterday off sick to try and clear the headache – I had two phonecalls from work even though I had rung in sick. Both related to things that they could have sorted themselves. Today (my normal day off) was slightly better – just 3 text messages. I find it hard to leave work behind and I think this shows that they follow me home as well.  I know this isn’t a good situation and it isn’t doing me any favours.

 

 

Today was my first headache free day for over a week. It had been bothering me. It was a bit like a migraine but I felt I was functioning too well to class it as that bad. However you define it, it was annoying me. In a very rash moment on Thursday night I decided I’d had enough and I went caffeine free.  My caffeine intake goes up when I’m stressed, as does my alcohol intake. It’s known affectionately as the ‘caffeine and alcohol diet’ in my office eg. “Things must be bad, Karen is back on her caffeine and alcohol diet”.  Five days later I’m pleased to report I am still alive and functioning on a good level. I manage to wake in the morning and I am sleeping so much better.  My only complaint about it all is try going into a shop and buy a sugar free caffeine free drink – your choice is either coke or full fat lemonade. Not a good choice. I refuse to drink water!

 

I had a trip to outpatients with Samuel last week and all was well. He needs another cardiac review in September but other than that things are still fine. He’d previously been on an annual cardiac review so the 6 month interval has worried me a bit – the rational part of me is telling myself at least he’s seen and checked before the winter which we know is always a period of time he struggles with. The irrational part of me is still reading into every minute detail that is given to us and thinking they are concerned about a deterioration. At the hospital I told them that he has been really well, apart from chicken pox in February and hadn’t even had a cold since we last went in December. Typically he woke up the next day with a stinking cold and cough. Last night it went into high temperature and then a weird rash this morning – hand foot and mouth. We’re now confined to the house for the next five days so I’m hoping this is the last of the sickness for the winter season.

 

As Samuel can’t go to nursery I’m off work tomorrow as well. The enforced break has done me (and my essay) good. I need to keep the good feelings lasting once I go back. I’ve got chemistry meetings with potential coaches arranged for the end of the week so I’m taking that as a big positive step in the right direction to sort out my stress and worry.

 

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Keeping the positive momentum going

Back to reality and back to work on Wednesday and so far so good.

I’ve tried really hard to keep positive and not get caught up and dragged down in others doom and gloom. I’m lucky that my secretary is on the same positivity drive and we have adopted the new office mantra of ‘What would the Dalai Lama do?’ to refocus ourselves on positive, calming thoughts (success of this varies!)

 

So the good things from the week –

Samuel is going to sleep much quicker. No protests or screaming tonight. He played in his room for a bit then put himself into bed after 20 minutes. He’s also sleeping until 7am most mornings. The sleep is making us both feel more human and better natured.

Today we received the clinic letter from Samuel’s last hospital appointment. We had been concerned about his breathing and he hasn’t been himself since October. His consultant feels that the breathing problems are not related to his heart and he probably is just suffering from repeated colds and chest infections. The letter explained that a chest xray shows resolving infection that doesn’t need further treatment. Cardiac wise he remains stable with no real change in his overall condition since his last review a year ago. He still has mild stenosis and regurgitation and some hypertrophy but this is as they had previously reported. He has another appointment in two months time but this is mainly to review his breathing and we were told that he would probably not have an echo then.

Had a really good day out of the office yesterday to concentrate on fellowship things. Have kept up with my journalling. I came to the conclusion that I have a real interest in coaching. I’d like coaching for myself to aid my development and to keep my motivation up. I also think it is a good way to help me deal with my team and help them to develop. I usually take on everyone else’s problems or queries at work and by adopting a coaching mentality I can reduce some of that workload for myself, delegate and aid staff development in the process – win win!

I spent yesterday searching for a coach and trying to find someone suitable. I have received money as part of the fellowship so had intended using this to pay for coaching. Today I had a conference call with the programme leader who has suggested she will contact our regional health authority as they will have coaches that they use and ask someone to contact me to arrange this. I will not have to pay for this meaning I can put more money into my service and team development.

Yesterday I also met with someone I had approached to be my mentor and clinical supervisor. I had sent a cheeky email asking for her to suggest potential mentors to me in the hope that she would offer to do it herself. The plan worked 🙂 The meeting went well and I have really good feelings about it. We discussed many things and our opinions are the same on a number of key issues. She has given me things to work on and suggested further sources of help. I also discussed with her about a proposed restructure of our trust and that I feel this is a threat to our service. She explained it in a different way to how I had viewed it initially. With a different perspective I am now confident that we can use this proposal to our advantage and strengthen our role.

Operation Declutter continues at home. My shredder is still keeping pace. I’ve ordered the phone docking station and I’m longingly looking at the Ikea website for storage for my kitchen command centre. Today I introduced the 15 minute rule on my work desk (yes, I am just as bad at work). One drawer cleared. My filing cabinet will take a long long time to organise.

 

So a good week. I’m concentrating on my little goals and using small steps to work towards the bigger objectives. I need to keep focus on this as its working well. Any other suggestions on keeping a positive momentum will be gratefully received!

 

 

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Circumcisions and scooters

Busy and strange day. Lots happening.

First a trip to the hospital with Samuel to see the urologist. He keeps getting recurring infections and our GP thought he might need a circumcision.  The quickest trip to the hospital I can remember – in and out of the car park in 18 minutes.

The verdict was good. Although he has a bit of a problem, it seems to be resolving itself and he felt it didn’t need surgery. If he gets another infection Samuel has to have steroid cream to help improve things but otherwise we can leave well alone.

Did my bit to spread the good karma by passing my car park ticket on.

Steven then received a letter from the police. His scooter was recovered from a disused hospital on Sunday night. Its a write off. He’s angry that the police recovered it and charged us for the pleasure. The last time his bike was stolen we had requested that we recover it. They ignored this and charged us a huge amount of money.  We formally complained and it didn’t really get us anywhere. Since last week, every single time Steven has spoken to the police he has requested that we recover it to avoid the costs. He was reassured that that would happen so he went a little mad this afternoon at the letter. £150 recovery charge then £10 per day storage fee. We estimate the bike is probably worth about £50 as it is in such a bad state.

He’s spoken to his insurance company and they have agreed to pay out for the bike and will also cover the charges from the police. I have now convinced him to let it go and move on.  I have a feeling the weekend will be spent scooter shopping. The new garage door will be fitted in two weeks time so everything seems to be moving in the right direction.

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And the miserable mood continues…

So I was in a bad mood yesterday.

This morning we were woken by our neighbour at 7am who said we needed to have a look at our garage.

Steven’s scooter has been stolen and our garage door wrecked in the process.  Its the second time his bike has been stolen (last time was outside of work) so we know the hassle and inconvenience that this means. Its not the end of the world but just something we could do without thank you very much.

So far so good with the insurance. Someone has been out to secure the door and a new door will be fitted next week. The door was knackered and we needed a new one so this cloud does have a bit of silver lining.

The police have been but no sign of the bike. Last time it was found in a park having been joyridden by a group of kids. We’re guessing the same has happened again and if it is found it is likely to be a write off. Steven is clinging onto the hope that he will get a new bike out of it.

I was contacted by nursery today. They agree that their policy is unclear and that the way it is currently written gives the potential for me to interpret it as I did. As a result they are re-writing the policy. Whilst they understand my point of view, they are adamant that the minimum attendance should be across two days so they cannot accept my request.  The policy does have a clause for exceptional circumstances which they feel is met by his health issues.  As a compromise, they will continue to have Samuel for one day a week until he is due to change rooms in November. They feel that the transfer to another room will be unsettling and then the one day a week will become an issue.  I was told that they are not necessarily refusing to continue that arrangement but they strongly feel it will not be appropriate.  It was suggested that having a secure arrangement until November would give me time to make alternative arrangements if I needed to.

I spoke to Steven who is adamant we remove him from nursery on principle. He’s irritated me as it seems so black and white to him and an easy decision to make.  I’m the one who is looking for a new nursery with heavy heart and I really really do not want to move Samuel to another one.  His happiness is more important to me than my principles. Steven is not agreeing with this position.

I have some ideas and potential solutions so will mull this over at the weekend and hope I wake up with a decision that feels alright to both my heart and my head.

On top of this I have a urine infection. It’s my usual sign that I’m run down. Despite drinking three litres at work today it seemed to be getting worse so I admitted defeat and went to the doctors on the way home. I’m putting my faith in a box of trimethoprim that I have a better weekend. Also sick of cranberry juice already.

 

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A self-indulgent moan

Time for a cathartic rant in the hope that it helps me sleep tonight.

Reduced hours at work are all sorted. Work are happy with this, the long awaited ballet lessons for Eloise are all arranged and financial arrangements made to cut our costs. So, I was feeling very happy and relaxed that I’d made the right decision and we were all set to start in the middle of September.

On Tuesday I gave my nursery notice that I will be reducing Samuel’s hours of attendance. They declined it. Really did not see that coming and felt quite shocked and upset about it all. They have a two session per week policy. I was fully aware of this. It is standard practice and I understand and support why it is in place. For the purposes of funding a full day counts as two sessions (morning and afternoon) so I requested one full day in the belief that it constituted two sessions, meeting the minimum criteria. On Tuesday I was told that no it doesn’t therefore they will not accept Samuel at nursery for one day. The thing that upset me was they they said they were happy to have him for two half days. Quite what the difference is I do not know and no-one was able to give me a decent explanation when I asked.

I left nursery in tears. I got to work, left my keys in the ignition and thankfully my car was still sitting there an hour later when I realised.

Eloise has attended there since she was 4 months old. Nursery has been a heavy feauture of our lives for 4 1/2 years so I am particularly hurt that I have firmly been denied this with no real explanation or consideration.  For 4 years I have been a governor there so have given my own time to support nursery.

This has placed me in a horrible situation. Do I keep working full time in order to keep Samuel at nursery, stopping Eloise’s ballet lessons, increasing my stress and missing out on taking Eloise to school and picking her up? Or, do I unsettle Samuel by moving him to a new nursery that we do not know?

This change needs to start in the middle of September and I have to give nursery a months notice to withdraw Samuel so essentially I’ve been backed into a corner and have to resolve the situation in a week. Not good.

I’ve written to the head of nursery asking them to reconsider and explaining why I feel this decision is unfair and detrimental to us. I handed it in on Tuesday and as yet no one has contacted me.  The nursery is part of a childrens centre that does excellent work to support families yet I’m feeling very let down and hurt at this moment in time.

I looked round another nursery this evening. Its more expensive and mentally I was comparing it with our current nursery. It didn’t come close. I do not want to move Samuel but feel I have no choice.  The lack of control over the situation is not good!

The day that this change was due to start is Eloise’s last day at nursery. I had seen ourselves as going there until Samuel started school. Instead, I’m feeling very bitter and sad about leaving when it should be a happy time for Eloise. It looks like that will be Samuel’s last day too.

I really am so upset about this and it’s festering far too much in my mind.

On top of this Samuel slept for over 4 hours today and had to be woken up for tea (he’d fallen asleep eating his lunch). He seems to be sleeping more and more and that really isn’t good for the heart mummy paranoia. He has a urology appointment at the hospital next week. I’m secretly praying they need to operate just so he’ll get an echo and we can check on the progress of his valve.

And I have come down with a UTI. After getting over tonsillitis I’m now worrying about spending another weekend feeling like rubbish. Busy day tomorrow and not sure if I can fit in a doctors appointment. I’m currently drinking gallons to try and get rid of the evil thing.

Moan moan moan. Someone please slap me.

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Positivity after the gloom

  • I passed both of my essays – a distinction in one of them. It shows  I am capable of doing a masters and the blip during my last module was a one-off and down to bad timing.
  • Samuel is better after a few days of diarrhoea and the worst looking nappy rash I’ve seen in a long time. He’d been cheerful throughout it but had to keep him off nursery.
  • Steven was a star at staying up and looking after Samuel when I had to work.  We managed it well between us with Steven sacrificing quite a bit of sleep to help me out.
  • I’m getting my hair highlighted tomorrow. Debating going a bit mad but will probably wimp out at the last minute. As long as it makes my grey less obvious I don’t care what colour they make it.
  • The weather is great at the moment. Life is more manageable when the sun is shining. I’ve made it through another winter without needing to buy the SAD lamp I debate every year.
  • I’m feeling better about running. Things have not gone to plan this week and I haven’t been able to get out when I wanted but I’m not letting this worry me or have a negative effect. 16 weeks until my run so I still have few weeks to get into my routine.
  • Just over three weeks until my annual leave starts (resisting starting the sleeps countdown just yet)

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A good hospital letter!

We had to take Samuel to the hospital last month. It was his first appointment for six months and leading up to it I’d convinced myself he was deteriorating. His hands and feet had been a poor colour and he seemed to be struggling in the very cold weather.

The appointment went well. His cardiologist agreed that he appeared worse but reassured us that it wasn’t heart related and was most probably due to the continual cold he’s had all winter. There was a student present and the explanation was given that when Samuel was diagnosed he was in severe heart failure – this was giving greater concern than his aortic stenosis. It took six months but his cardiac function eventually returned to normal and at this latest appointment it was confirmed that it remains normal.

We received the copy of the GP letter today. I’m learning that sometimes you find out things not mentioned face to face but this one was very positive. The final paragraph has made me smile lots this evening –

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Samuel’s taggy blanket

Samuel is obsessed with anything that he can snuggle in bed – he is a teddy bear fan and at nursery has his own brushed cotton pillowcase to cuddle. He usually sleeps with a label stuck in his mouth as well. I think he is the natural candidate for a taggy blanket. I made one for Eloise when she was born but she was totally disinterested in it. After looking at the prices of ‘proper’ taggies (and having a slight heart attack) I decided to have another go at making one.

I got the fleece at the Festival of Quilts on Friday and then got all the ribbons at Hobbycraft. Eloise had fun picking out all the colours with me. So far less than £6 and half and hours work this is what I have created

I’m feeling pleased with it. I was planning on giving it to him as a Christmas present but Steven has been all negative saying he won’t be into that kind of thing by the time we get to Christmas. Oh well!

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