Thursday, 11 December 2014

A Christmas Concert

Tuesday afternoon I found myself at Capel Rhos-Y-Gad watching Osh's school Christmas Concert. The kids were all great but to be honest I found it really hard to follow; it wasn't a "play" with costumes- all the kids were just given a line each to recite and it couldn't have been fun for them (well not as much fun as last year - which was brilliant!)

As I sat there I could see Osh constantly looking over at me and giving me a cheeky smile; I suddenly remembered that when I came to see Osh's Christmas Concert last year - I came home from London to see it. As I sat next to Emma in the school hall, trying to seem happy in front of Osh and the other parents - inside I was a mess. The next morning Martha Grace was listed for theatre for her 3rd Open Heart operation.

Me and Mark hadn't actually discussed whether or not we were going to consent to that operation. Little baby Owyn had died at 16days old on the Monday,

Wednesday, 3 December 2014

Christmas Countdown




It's December. The advent calendar's have been opened, the Christmas tree is up. Me and Martha go to get Osh and Isabella from school and bring them home. I give Isabella and Osh a snack, I feed Martha Grace, I make a start on dinner and before I know it Mark arrives home from work. We eat dinner together and then Mark does the dishes. We get the kids to bed and either we watch something on TV together or I watch something on my Tablet and Mark is on the playstation.


The crucial part in all of this is that we are at home. We are together.


I would have traded my soul with the devil to have this life back in December 2013.


I remember as we walked between the accommodation and the hospital, or when we went to a Cafe Nero on Southampton Row - I'd watch people go about their days. I'd imagine they were going home and we're going to have a cozy night watching a Christmassy DVD, that they'd spend their evening wrapping Christmas presents - that they would be in their own home.

Sunday, 16 November 2014

A husband and child - free day

I haven't had a day like Saturday in years! I was up and out of the house before 7:30am 14mins later I had boarded a train and was off to meet my best friend in Wrexham
;  no husband and no children.

On the train I enjoyed reading a trashy magazine and looking out of the window as we made our way across the North Wales coast, I didn't have to entertain the kids. When I arrived and we went in search for a cafe for breakfast I didn't have to look out for bottle warming facilities, space for a pram and high chairs. As we spent a good few hours at the make-up counters at Debenhams and Boots - I didn't have any children running riot. We could chat without any interruptions and I could swear like a trooper.

It's so hard to think that this time last year Martha Grace was fighting for her life in a "critical but stable" condition - and just a year later I enjoyed such a carefree day with that frightening time (hopefully) behind me.

I'll be completely honest and admit that each time we passed a family with a young son and two little girls - I missed mine terribly; but I think it's hugely important that as parents we do take time to ourselves - we don't stop being who we are once we have kids.

We've a few busy weekends ahead with plans to visit family, me and Mark have arranged a night away for our Christmas shopping at the beginning of December - something we didnt get to do last year. Once things have settled down in the new year I'll be making plans for another girly day with my bestest.

GM
x

Thursday, 6 November 2014

Bonfire Night 2014

I didn't enjoy Bonfire night last year (2013). We has just received the call from London that Martha was listed for Theatre on the 14th November and I couldn't concentrate on anything else, let alone enjoy life.

This year I wanted to make up for what I felt I'd missed out on. When we lived in Beaumaris we could easily walk to the end of our road to watch the local display without worrying about finding somewhere to park the car and wrapping the kids up, getting muddy and having to haul a pram over muddy fields - NO THANKS!


So we decided to do a little display at home and I made Pulled Pork baps and Toffee Apple Cupcakes for afters. Osh also indulged in some Hot Chocolate with mini

Saturday, 1 November 2014

Feeling sorry for myself

It's a Saturday afternoon; it's raining so we decided to have a day at home rather than drag the kids out only to get wet and miserable in the cold. Martha is napping in bed, Isabella is fast asleep on the sofa and Osh is looking through Netflix for a film to watch...Mark is making the panad's and after reading some of my favourite blogs on my little tablet - I had the urge to write.

I've gotten really lazy recently, even over the half term holidays I didn't make the most of my time with the kids. I blame the weather but really it's my fault.

We were away at a friends wedding last weekend, Mark took Monday off as a holiday so we could go out with the kids - we went to Asda! The weather in Anglesey was awful so we decided it would be a quick trip with lunch in the cafe; but when we arrived in Llandudno it was glorious sunshine - only problem

Friday, 24 October 2014

A Heart Charity is not Newsworthy

I've sat in a Hospital cubicle stroking my tiny daughters hands while the parents next door (separated by a thin curtain) were told there was nothing further that could be done to save their daughter; I've felt my legs give way beneath me and my blood curdle as I heard their terrifying sobs escape their bodies uncontrollably. I've hugged parents and struggled to find the words to say when they return to the parents room after spending the afternoon with their son for the final time before letting him slip away peacefully.

The world isn't an innocent and wonderful place to me anymore; I've seen so much suffering (by brave children and their amazing parents). I've also had to watch my own daughter suffer because in some cruel way - it's the decision we made because we love her and weren't ready to give up on her.

I was tweeted by a fellow Heart Mum asking for my thoughts and feelings on the fact that a Charity providing support for Heart Families and children with feeding issues was told by a Newspaper that they weren't newsworthy as they aren't a cancer charity.

Now I'm not going to be disrespectful to any charity; any charity who funds research and supports families with any medical needs deserves all the funding and publicity available.

How can any publication deem any Charity to be not "Newsworthy"??? 

The facts are quite scary; of every 100 babies born today - 1 of them with be born with a Congenital Heart Defect. 

CHD's kill more children than all Childhood Cancers combined.

My Brother suffers from Hypertrophic Cardiomyopathy (like Fabrice Muamba) Wolff Parkinsons White, Aortic Stenosis, Bicuspid Valve (we all should have a Tricuspid valve) and Moderate to Severe valve regurgitation.

Wednesday, 22 October 2014

A letter from London

Tonight we are finally back online; the telephone pole outside our house was hit by lightning almost 2 weeks ago which fried our Router and our ADSL filter - it's taken until today to get someone out here. There are a couple of posts I've been meaning to publish but as I always email photos from my camera to myself - I couldn't do that without out WiFi.

So our last trip to Great Ormond Street Hospital was on the 11th of September, it was Dr Ian Sullivan himself who we saw this time. I've got to say though; although we owe Martha's life to him - I don't like seeing him in the Cardiology Clinic. It might sound completely crazy but he is so "proper" that he isn't enthusiastic enough for me compared to Georgi who we saw last time (you can read the post from our June visit to London here)

While we were offline our review letter arrived so I thought I'd share this one like I did the last time. I'm sorry if you think this is inappropriate but please respect that I do this to support parents who are desperate for any kind of information to help them prepare for their child's treatment.

So the letter starts;

RE: Martha Redfern-Murphy

Diagnoses:
1. Prenatal diagnosis interruption of aortic arch distal to left carotid artery, large malaligned outlet muscular VSD, subaortic stenosis.
2. Aortic arch repair with left subclavian flap and pulmonary homograft reconstruction, and banding of pulmonary trunk August 2013.
3. Patch closure of VSD, de-banding of pulmonary artery, and resection of left ventricular outflow tract obstruction, 14th November 2013.
4. Intention of epicardial dual chamber pacemaker, 25th November 2013 (bipolar atrial and ventricular pacing leads attached to left atrium and posterior wall of left ventricle via left thoracotomy, connected to generator in suprarenal pocket).
5. Closure of residual VSD, direct closure of patent form and ovale, relief of supravalvar aortic stenosis with patch augmentation, 12th December 2013.

I was please to see Martha, and especially to see her looking so well. She rolls and commando crawls but is not yet standing. She looked well (7.5Kg, 71.2cm). The femoral pulses were easily palpable. The cardiac impulse was not overactive. I could not feel a suprasternal thrill. There was an ejection systolic murmur at the left sternal edge.

ECHO showed satisfactory biventricular function. There was a synchronous contraction of septum and left ventricular posterior wall (LVIDD 27mm, fractional shortening 26%). There was mild symmetrical left ventricular hypertrophy. There was subaortic narrowing, with flow acceleration up to peak velocity 3.7 m/sec. The aortic valve function was good. There was good relief of the previous supravalvar aortic stenosis. Widely patent aortic arch. No residual VSD was seen. Physiological tricuspid regurgitation had peak velocity that was not more than 3 m/sec. Flow in the reconstructed pulmonary artery was not obstructed.

Progress is satisfactory. I suggested she could discontinue Furosemide and Amiloride, and wean off Amiodarone over the next month, which would leave her on no drug treatment. ECG monitoring for 24 hours after her last visit showed either sinus rhythm or atrial paced rhythm throughout with no suggestion of tachycardia. We arranged elective cardiology review and pacing check in six months which the family prefer to continue here despite the distance involved.

***

Although we are happy with the contents of the letter, the tone is completely different to Georgi's letter in June. But if I could go back in time to December 2013 and show myself this letter - I'd be dancing around her bedspace, deliriously happy for sure.

Martha was weighed yesterday and is now 8.06Kg which takes her to 17lbs 13oz - amazing considering when she can home last September she was a tiny 5lbs 13oz.

Here are some photos I've taken of her recently.

GM
x







The purpose of our blog is to raise awareness for Congenital Heart Defects and offer hope to families who are about to begin their journey. If it can happen to us then it can happen to anyone. Please consider sharing this post using one (or more) of the social media icons at the bottom of this post - it might reach someone very much in need. Thank you xx