Happy New Year! 

Erin has had a good year – she’s a chatty, bossy and cheeky 3 year old. December has ended well with a wonderful Christmas at home with her family. Erin has enjoyed advent fun too – despite having chicken pox and being unable to go out for two weeks whilst the spots scabbed over. 

Although she has had a Winter full of different viruses – we have avoided an overnight hospital stay, which has been lucky. Both Lee and I have noticed a decline in Erin’s activity levels, and she gets particularly out of breath and cyanosed on exertion that she would’ve coped okay with previously. She can’t climb the stairs at home without being really quite ‘puffed’ out once she’s at the top of the stairs.

Erin’s cardiologist has put her forward for a cardiac catheter procedure in the new year – as the decline in exercise tolerance and her SATS being lower may mean we are heading towards the third stage surgery – the Fontan. So I’m sure we will be blogging about that once we know more. I’m feeling slightly apprehensive as we’d all got used to ‘waiting’ for the 3rd stage, and to hear it’s possibly looming nearer gives me butterflies.

Lee, Noah, Erin and I have had a relaxing (ok, noisy!) but chilled out Christmas. We’ve enjoyed being at home and going for buggy walks around the local area – both Noah and Erin have loved seeing all the Christmas lights on houses. Erin is taller and heavier now (she’ll be 4 in April 😊) and now she is using the buggy much more (about 90% or more) I have found that it’s quite a bit harder to push, manoeuvre and bump up and down kerbs etc. I’ll be making enquiries as to special needs pushchairs / wheelchairs once we see the physio team or the pediatrician.

Whatever the year ahead holds for Erin, I know that our headstrong girl will give it her all. With very best wishes for a healthy, happy new year from all the Stangroom’s.

Freya, Lee, Noah and Erin x x x x 

Happy 3rd Birthday

Today Erin celebrates her 3rd birthday. Yes, you’ve read that correctly. Her 3rd birthday. A momentous occasion that was summed up last night when I suddenly realised I was telling her, “You’ve made it darling, another birthday.” 

We are thankful everyday for the time we get to spend with Erin. Of course I am heavily biased but, to me, Erin and her half-a-heart are perfect. I wouldn’t change her ability to scream at me in defiance and then tell me she loves me in her short of breath manner; or her ability to break any silence with a deafening rendition of Disney songs and her latest offering, ‘Uptown Funk’; or her ability to annoy her brother and then insist on double kisses and cuddles from him just before bedtime. Erin is a spirited young lady who doesn’t yet know her limits and the full extent of her condition. All she wants to do is explore the world and keep up with the others. Who are we to stop her?

Erin has recently been enjoying potty training and we have also signed her up to start pre-school in September, which will see her bake each day, prepare lunch using ingredients from the preschool gardens and make great use of the woodland setting (we’ve already purchased the new coat, with fleece lining to keep her warm, for all the outdoor adventures she’ll be having!). Noah is growing up to be a strapping, handsome young man who, although he wouldn’t admit it, is very protective of his sister. He is very in to comics and superheroes at the moment, which inspired the poem in this post.

Please keep Erin in your thoughts and say a little prayer today for all of those half-a-heart angels who didn’t get to celebrate their 3rd birthday on Earth, and their families who miss them dearly.

Lee, Freya, Noah and Erin xxx
   
    
    
    
 Half-a-heart Girl

Her heart looks a little different
To the one that beats in you
It has battled giants and conquered mountains
How it’s done known only by a few

For deep inside it lives a hero
Wearing a pink cape and blue-tinged lips
With special powers of thought control
That force you to love, laugh and shake your hips

Some days the hero tires
With the rhythmic pounding of the fight 
And the girl will have to rest awhile
So the one inside her can regain her might 

Of course, the girl has a sidekick
To be there when her own hero may falter
Lending a hand, in his wholehearted way
Sometimes impatient, but a brother she would not alter

Thick as thieves, they plot away
Sharing innocent wonder and fun
But the hero often resurfaces,
And you steady yourself for the unknown to come 

Yet side by side they will journey on
As long as they can together
The siblings, the hero, the memories they’ve all made 
Will live in my own heart forever

Sticker bribery!

Erin’s Health Visitor came this week to weigh her at home. This is because clinic, which is often busy with lots of babies can be a cause for germs being caught. We also have a Community Nurse that visits us at home for SATS checks. 

Erin is pretty used to these periodic ‘checks’ at home and luckily takes them in her stride. As soon as the HV arrived through the front door, Erin started demanding stickers. The sort of kiddie-friendly bribery stickers which the Community Nurse has bundles (and bundles) of in all varieties. 

The poor HV didn’t have anything of the sort. After a fairly smooth process of stripping down for the scales and redressing (read: toddler torture!) Erin was naturally asking for her prize: ‘Sticker time!’, ‘Sticker please!’ ‘Where’s the sticker?’

I explained, and Erin was kindly gifted a post it note with a drawing of a cat! HV must’ve been in the girl guides.

I was so pleased Erin has been following her percentile, as I had been thinking she looked a little thinner. I was also quite pleased our little girl was polite, and also that she didn’t give in!  

 

  

Happy 2nd Birthday Erin!

Today, Erin became 2 years old. It’s hard to believe we’ve got to this moment – as when she was born we just couldn’t anticipate what lay ahead for our heart hero. 

For a toddler with half a working heart she is doing incredibly well at the moment. We continue to be thankful for her determination and the talents at Southampton General Hospital. 

Xxx 

       

Two years on

Two years ago tomorrow the lives of our whole family changed forever, in an unexpected and upsetting way. Both Lee and I were utterly shocked to hear during a 20 week scan that our unborn baby had a serious cardiac defect, and we had very tough decisions to make.

In someways, I carry that news with me everyday. Not an hour goes by that I don’t think of HLHS. My worries are multiplied about Erin, Noah, my husband and my family. Yet, in many respects having lived the life we have, having seen the sights we’ve seen, and held Erin’s hand throughout as she battled through, I know we are very lucky. HLHS is a severe heart defect, and many babies sadly don’t survive. In some ways, I’d quite like to pop in to visit Mr Heard and show him how well Erin is doing, given that he couldn’t tell us if Pom-Pom at 20 weeks would survive.

Now that Erin’s Norwood and Glenn operations completed, we are in a ‘lull’ of surgery, with more on the horizon, but far enough away for the moment. Erin’s cardiac review last week went well, with ECG, echo, SATS, weight and height all looking good. Tara, Erin’s rather lovely consultant gave us another six months grace before our next cardiac review. Such a relieved Mummy!

As a heart parent, we do a lot of reading about HLHS and CHDs, and it’s reading about the medical breakthroughs that give so much hope to us and HLHS parents-to-be. The Todd and Karen Wanek Family Program for HLHS at Mayo Clinic in America have been looking into regenerative medicine, and have just announced a trial of using stem cells during Glenn surgery to help the functional right ventricle become stronger, potentially removing the need and risk of a heart transplant in later life. Amazingly just two years ago in December 2012 at one of the numerous Fetal Medicine scans I asked the experts about the idea of independently banking the umbilical cord blood for future use. Medicine, particularly in the USA moves at a fast rate. Although it’s unlikely to be available here in the UK at present, and although Erin has gone past the Glenn stage, I now wish so very much that I’d banked those precious cells!

In comparison to 21st November 2012, we are in a completely different place. Although life with a HLHSer can never be ‘plain sailing’, we will be counting our blessings ❤

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Half-term update

Last Sunday I competed in the London South Tough Mudder course with an amazing group of guys. The constant dry/freezing cold aspect over 12 miles made the course hard work, but our group all pulled together and the camaraderie was fantastic all the way to the finish line. I must say a huge thank you to Craig Daniels, who initiated this challenge and suggested that we raise money along the way. To date we have raised £1643 for The Charlie Jones Foundation and Friends of PICU, helping to ensure that children and young people continue to receive the life-saving services needed whilst they are in the Paediatric Intensive Care Unit at Southampton General Hospital. It is never too late to donate (the photos below are worth a few pounds themselves!) and you can do so by visiting our JustGiving page. Alternatively, you can text PICU80 followed by the amount you wish to donate to 70070, for example PICU80 £5. Any amount you are able to donate really will make a difference.

This challenge has been just as much about raising awareness for Hypoplastic Left Heart Syndrome as it has been about raising money and as you can see below our efforts even reached the local papers in Okehampton, Devon. If you haven’t done so already please visit The Charlie Jones Foundation site to read more about the wonderful awareness and fundraising work they do.

This week has been half-term in the Stangroom household and Erin continues to walk/run all around the house and although we notice her getting out of breath she doesn’t seem at all concerned herself and pushes herself even further. As she gets older I am sure she will recognise her own limits, but for now all she wants to do is keep up with her big brother. Erin is developing a real cheeky personality, changing her mind constantly and making us all laugh with her pleading for her Minnie Mouse bottle at all hours and always asking for a nininj (orange) for breakfast! Her headstrong character has shown itself on more than one occasion this half-term too, not taking any nonsense off Noah and even pushing him out of the way so she could get past.

Noah continues to love big school and even spent a day this week with his new best friend, sharing in their mutual love of trains at Moors Valley Country Park. He also met up with old friends at Hillier’s Arboretum.

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Tough Mudder

You may have heard that in one week I, along with a six other fantastic guys, will be taking part in Tough Mudder London South near Winchester. According to Tough Mudder’s own website, this is arguably one of the toughest obstacle courses they run, resembling a ‘medieval battlefield’. Set over 10-12 miles the course will test all of us physically, especially when we are up against ice plunges, electric shocks and a whole heap of mud.

Why, you may be asking, are we even contemplating this? The fatigue we will experience in this single afternoon will never compare to the long and often painful recovery periods of seriously ill children in the Intensive Care Unit at Southampton General Hospital. My own daughter Erin has spent time in the PICU on three occasions and after her second stage of open heart surgery watching her painful recovery was heartbreaking. Without groundbreaking medical resources and the expertise of medical staff Erin would not be here to grace us with her beautiful smile each and every day. Resources such as these are costly and so we are aiming to raise as much money as possible for The Charlie Jones Foundation and Friends of PICU, both of whom fundraise to support the services offered at the hospital. Donna Jones, the founder of The Charlie Jones Foundation, is a Godmother to Erin and has supported our little family since we first received the news that Erin has Hypolastic Left Heart Syndrome. You can find out more about her Foundation here.

To date we have raised over £1000 and the team would like to thank all those who have donated so far. If you haven’t yet donated and you are able to do so, please visit our JustGiving fundraising page. Alternatively you can text donate by texting PICU80 followed by the amount you wish to donate to 70070, e.g. PICU80 £5

Our start time next Sunday will be 11am at the Matterley Bowl, near Winchester. If you are local and want to pop along to show your support then please follow this link for details.

Thank you again,
Lee, Ben, John, Craig, Stewart, Jamie and Anthony (aka Team Bring It)

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Oh the places you’ll go…

For the past week-and-a-half Erin has been pulling herself to a standing position and generally becoming much stronger on her legs. We have noticed that she can become breathless after these exertions and despite being excited that walking might be just around the corner, we didn’t want to get our hopes up.

Today we both took Noah to his gymnastics club and out of the blue Erin decided to walk the entire length of the corridor on her own. Four times. She then proceeded to carry this on in the park outside and whilst at home too. The look on her face was magic and the look on ours was one of sheer pride.

Click here to see what she got up to before bed.

Congratulations!
Today is your day.
You’re off to Great Places!
You’re off and away!

You have brains in your head.
You have feet in your shoes
You can steer yourself
any direction you choose.
You’re on your own. And you know what you know.
And YOU are the guy who’ll decide where to go.

Read the full version of Dr. Seuss’ Oh The Places You’ll Go!

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First Day at School

Well, today is a whole new adventure for Noah, it was his first morning at ‘big school’. He was a bundle of excitement as his first day in Reception class arrived and without many nerves at all! The practising of putting on uniform and new school shoes over the holidays did pay off, as he looked super smart and very proud of himself as he posed for photos this morning.

Having had the experiences of the past 17 months, I can safely say that we feel very lucky and pretty blessed to celebrate this milestone that many may take for granted. Becoming a heart family makes you realise just how precious and fragile life can be – and I must’ve hugged Noah tightly about 100 times today and told him how proud I am of him.

Over the Summer we’ve neglected to update our blog, but we will put up some more photos very soon – I promise!

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Can’t really forget those four little life changing letters…

Maybe not ‘forget’ as such, but maybe stop remembering for a brief period of time? HLHS and our experiences have dictated much of who we are now. Friends, acquaintances and even family have changed and shifted – mainly due to who ‘gets’ it the most and who isn’t overly confronted by discussing CHDs and finer points of life with a young child following a palliative surgical care route.

As we are busily preparing for the end of term, and waiting for the summer holidays to start – including our first family holiday abroad as an awesome foursome. I’m making a start with catching up on laundry and housework whilst Erin naps.

I decided on a whim to drag out the hoover and vacuum out our mess of a car. In amongst the crumbs, pebbles and general kiddie debris along the back seats, I managed to hoover out a few pieces of paper which had obviously been lost in the gap between the boot and when the back seats lay flat. After some persuasion with the dyson nozzle, it turns out the paperwork as some of Erin’s hospital notes, from this time last year. Now, we have lots, and lots of paperwork relating to Erin. It seemed a strange coincidence to happen upon this….

This time last year seems so long ago, yet the wait to not be a fragile ‘interstage’ patient between Norwood and Glenn seems like yesterday. It all still feels so real, and maybe that’s why I struggle more with remembering that Erin is pretty robust now.

The letters included our copy of a clinic letter from Tara, Erin’s consultant to Markku, Erin’s surgeon which thanks him for accepting Erin for the second stage (gulp!)

Tara kindly sprung it upon us last year in clinic: “…with regards to surgery, I was thinking next week?” which cleverly left me less time to panic and more time to rearrange Erin’s christening 🙂

Friday marks Erin’s second heart day. One year ago since we handed Erin over to surgeons again. One year since our last summer holiday was taken up by a bone and wound infection, plus numerous anaesthetics. You are and always will be a blessing in our little family. Well done Erin-Pom, you’ve made it this far. Here’s the letter found today and some pics of you pre and post Glenn X x x x x x x

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