Poem; My Life Yet To Come by David Moore - Fellow Heart Parent

My days were numbered from the very start

I fought for every breath due to my heart

My PDA closing I started to gasp

Just trying to breathe became such a task

The medicines they worked for a couple of days

But my heart still beating like I was running a race

It was beating so fast it was wearing me out

My heart was failing there was not doubt

My parents were worried, distressed, and confused

The tears now flowing due to the news

Tomorrows the day I go under the knife

I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor

I had not the energy to play on the floor

I'm feeling so weak I just want to sleep

Something my mom is watching is starting to beep

I can hear them talking but just don't understand

I am still comforted by the warmth of her hand

The tone in her voice as she started to speak

Something about Jesus and my soul to keep

I have my eyes closed but I still see a light

I'm am very little but I know something's not right

I hear my mom cry as I took my last breath

But I am to young fear this thing they call death

The first thing I saw when I reached towards the glow

Was the figure of a man that for some reason, I know

He wrapped me in his arms and I felt so safe

I reached up to him and I touched his warm face

He spoke so softly and as not to startle me so

He told me he loved me and was letting me go

He told me a story of my life yet to come

That one day my living would be witness to some

I don't know why and I still can't explain

But I opened my eyes when I felt a sharp pain

I took a deep breath and I started to cry

I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed

For some reason I'm stronger and wanting to be fed

My parents don't know it but I saw God that day

He gave me more time to frolic and play

God has his reasons that some live and some die

What some parents have to endure leaves a question. Why?

I know it's not fair but I don't question the choice

I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see

Because without it there's no story, no poem about me

I'm one of Gods miracles a testament to his grace

I was only a week old but I got to touch his face.

Happy Christmas & New Year!

It was eventful (it wouldn't be Ethan if it wasn't!) We had our lunch at the Brown Horse at Tow Law (Durham - it was divine!) and we were stopping over.

On Tuesday I took Ethan to the gp as the last well over 4 weeks we have noticed his breathing is very quick - over 40resps he is working harder eg his shoulders are moving up and down alot and his tug is worsened. He heart seems to be doing 10 to the dozen He saw dr leonard for a check a couple of weeks ago and she said his chest was clear although noted his resps etc were up.

He has had constant temperatures which we are attempting to keep down with calpol, a cough, runny nose (gp said fruity cough and rattly chest lol) but his chest is clear?... he is grey and sometimes navy. He is now off his food and intermittant diorhea. Generally he is up and down, knackered one min perked up the next.

That morning, he had no energy, we were holding his head up etc... he refused breakfast, but had a little dry cereal in the end - then perked up by 10am! He has given us some amoxicilin to start if he gets any worse

I think its probably as he had his s.flu jab on 13/11/09 he was alright for a week or so then started with all this.

SOooooooooo, he had been GREAT on Christmas day, eaten loads absolutely fine no problems at all - no reason to be concerned anyway. Ethan was sleeping and we were in our room, when he started grunting in his cot. I picked him up and he was navy started being really jerky but rigid legs etc... floppy not happy at all. So I rung 999. It took an age for them to arrive - but we were in the middle of nowhere and it was snowing ALOT!

Ambulance drive from tow law took half an hour and was awful in the snow and think we knew more than they did they looked very young! he wouldnt let them touch him was histerical...coughing up frothy stuff, but at least he was responsive! Within half an hour of being in and having a little 02 he was ten times better... very very strange.

We are home we came out at 1am as he was much better didnt see the point in stopping in and wouldnt have got any sleep. They can see changes in his lungs and a small amount of consilidation but dont think its pnemonia, gave us some AB's . Didnt sleep as typically, as soon as he was asleep in his cot again - he started grunting?! so pulled him in with us where he was more upright and he seemed more settled.

Drive back to Tow Law very hairy in bleaching snow... I hope we aren't in for a replay tonight though as he is still poorly and we had to ring for another weeks antibiotics.

SO I just wanted to wish everyone a very Merry Christmas and all the health and happiness for the New Year - lets hope this year is a good one.

Oh and btw we are still waiting to see the surgeon about his next surgery but should get a date soon xxx love to everyone x

Catheter 10/11/09

Thank you for thinking of us xxx We are home today and tbh feel very frustrated. He went down for catheter we left him on the table:( at 11 and he didnt come out until 2! not back on the ward until 3 I think they were having a few problems waking him up - said he could sleep for england!

He came down onto the ward with no o2 which was good. They did the cath an endoscopy and angiogram.

Cardiologist came back down and said everything was as expected. Nothing critical and asked how quick would I like the operation for him? I said tomorrow because of the way he is. He said we are looking likely in the new yearbrickwall surely its unfair to leave him the way he is?? puffy tired etc.

The trouble is, he is too little to do the rastelli and they would like him to gain weight - but he has gained 0.05 kilo in two weeks! I asked about putting another shunt in as I was told previously that was what they were going to do. And he said well i suppose you could put another very small shunt in...

so we just have to wait.

Didnt get much sleep last night as his monitor kept going off his heart rate dropping to 71 and sats sitting at 72 ish... but no the nurses never bothered. So im wondering if 71 is a normal sleeping heartrate?

On the other hand I am feeling very lucky as there were two little boys in hospital awaiting transplant. One of which was very very went on the berlin heart yesterday so I am thinking and praying for them both that they have the strength to wait xxx

Cardiac Catheter

Tomorrow we go into the Freeman Hospital at 3pm for Ethans Cardiac Catheter on Tuesday.

The catheter will check his plumbing so to speak and then they will decide what surgical route to take next.

Fingers crossed that they have a bed for us.... Im so nervous I could be sick.

Still waiting!

We were told Ethan needs to have a cardiac catheter for them to check whats happening inside his heart. We are still waiting for the appointment to come through - no suprise there then!!

We should have had the date last week but nothings arrived as yet...

More Surgery

Ethan definitely needs further surgery, so its just a waiting game to go in for a cardiac catheter and then decide where we go from there.

On the plus side, I have posted at the side a link for some pictures we have had taken. You can see the difference cant you! we are so so proud xxx

Just a quick note

as my computer battery is not good haha.

Ethan has been tired breathless etc so we have an appointment at the Freeman on Monday to see if he needs his next operation.

keep your fingers crossed x

Going Well

Sorry its been such a long time since I updated. Ethan has been without his NG tube since the last post and is doing well. We could do with better fluid intake but hey he is putting weight on.

He was weighed on Friday gone and was finally 9.5 kilos which is 20lb 9oz in old money ;-) he is just going into his 12-18 month tops ((finally at 21 months!)) but they are still very big - we are just finding he has gone very long and the 9-12 don't cover him properly.

This weekend gone, we have been to Rochdale and got a great welcome at The Royal Oak in Littleborough who did a 12 hour darts marathon, raffle etc in aid of the Children's Heart Unit Fund - the ward at the Freeman hospital where Ethan has been and will be treated. It was arranged by my wonderful sister and brother in law (I love you both).

I can honestly say, I have never met such a wonderful group of people. Considering they don't know us personally to have been so generous with their time - never mind their money I was so overwhelmed I had to go to the loo for a little cry.

I wish I could have put them all in my pocket and have taken them home! so lovely.. will definitely be back for a night out again soon with our new friends. Needless to say I was very much worse for wear on Sunday morning BTW if any of you guys read this - make sure you post and say hi!

Will post here to say how much was raised when we have a total figure but we did over and above what we thought. Oh and pictures will hopefuly be up soon too.

ALSO IT SHOULD BE IN THE OBSERVER THIS WEEK - NOT SURE WHEN

love Sam xx

So far so good - ?!

Well its been a week and a half and he is still doing well. He was weighed yesterday and as put on 100grams which is good. Food wise he is eating but the fluids aren't so good. So the tube may go back down for fluids only.

A bit of a bummer but the last thing we want is for him to get dehydrated. We have booked ourselves a little holiday to Lincolnshire so looking forward to that and we have just had grandma, Auntie Lisa and April to stay for the weekend - which was great. Was sad when they went home though!!

Oh and I passed my theory test on Saturday!!! one step closer to Independence !!

Yay !! Ethans NG Tube is out!

Well, what can I say. I think Ethan has had a bit of a growth spurt. And he has been eating so well that we decided that if he pulled out his ng tube we would leave it out.

He pulled it out last Sunday and so far he is ok. He is eating well, but the fluid intake is not great. So we are getting him weighed tomorrow and will take it from there. Not sure what we will do if he has lost weight as he was previously getting one bolus milk feed and one bolus water feed.

Will keep you posted - but I'm such a proud mummy. Last time we did this Ethan was very poorly from the lack of food etc so it is one step at a time.

The other thing I wanted to say, is thank you to everyone who has commented and supported us throughout the last month and last two years. We greatly appreciate everyone who thinks of us and your words and kindness mean alot.

When I can figure it out I will post new photos! I promise.

No more answers?!

Well surprise surprise we were there from 9am waiting around, Ethan got hot about 11am so had to strip him off and gave him the calpol although it hasn't had much effect.



Had an ECG and it was much longer than usual eg lots more paper? don't know what that means but they said it was ok.



They mentioned endocarditis but said it isn't at this stage, did a quick echo of his valves - don't know why as its a shunt hes had put in and said that was ok.so just viral and to see what comes back from Dr Spencer's sample on Friday.



I told him about the blue spells at the beginning and he said nothing then at the end i said so what am i to do if he does it again, he was shocked as if i hadn't told him but said well did he collapse???Well I don't know he went to sleep on my knee and i thought it was weird after only being awake for 45 mins but his breathing was ok..



SO I am resolved to phone an ambulance if it happens again as I'm at my wits end and feel like crying - a virus hasn't effected him like this before so why would it do it now?? his sats are allot lower and his breathing has got slightly worse... but he isn't sweating etc.... his eyes are red the whites of his eyes i mean, so I've been to the gp and got some drops to see if it clears up.



he hasn't been right since Jan and no one seems to be bothered..



they cant talk to each other..and although i seem pretty confident talking to his other professionals i don't seem to know what to say when i see the cardio.

Not again!!

So we had our outpatients appt this morning with Dr Spencer (respiritory) he was ok, then the next min he was scalding hot and navy blue...

so anyway we rang and asked if we could come early..they did his temp which by this time had come down to 37 with brufen and did his sats and they struggled to get to 70 then managed one 75 in th end we saw dr spencer, he wonders if ethan has intermittent aspiration and wants to do more stuff even tho theyve already done the bronch and barium etc....

they suctioned him and lots of red goo came out - he is obviously very sore..asked the cln to come down and they thought it could have been a plug of mucus but if he does it again to ring her...his sats came up to 77% by this time (they were 86% Friday!!) but they are ok with 77% so not too worried.

he came home and slept.. woke up played for 45 mins then just went really floppy and lay down he went even more navy - will post pic though it doesn't show it great as the flash kept turning him mega white!...

and sleepy his breathing was a little heavy but nothing major or i would've rang an ambulance. he had brufen again at 2.15 and although he cooled down it took him until 4.45 to perk up, was floppy sleepy lay on my knee just really out of it...Rang paddy and she has made an appt for wed morning, so in the meantime what do i do?! I cant ring an ambo and say er would u mind checking Ethan's sats please??

Too many angels

Tonight, I am sad to say there is another chd angel. Life is so unfair. My heart breaks (literally)for her and her parents who very bravely took the decision to withdraw care. Every time I hear of a new angel - whether I happen to know their parents in any way or not I lose a piece of my heart. Because I just cannot come to terms with it.

Since having Ethan, there have been lots of new angels gaining their wings. You know nothing of this world until it hits you smack bang in the face like a car crash.

Heart defects are the NUMBER ONE BIRTH DEFECT. The statistics were 1 in 120 births. That is higher than hyperthyroidism which is what they do the Guthrie test for - that is 1 in 10,000 yet they test EVERY baby for this. Is it too much to ask that we check every baby? I don't think so.

People don't understand the constant worry and battles that comes with our special children, is his colour ok? is his breathing ok? is he puffy? If I wake up before him and I don't hear him babbling - is today going to be the last day that I go in to my sons room to find him alive? who knows but I treasure every moment.

Any belief I had in god is well and truly out of the window, but in its place I have learnt to love and accept and what really matters in life. That and very big bags under my eyes ... LOL

Please, if chd doesn't affect your life - spare a thought for those whose life it does touch.

Rant over. Fly high princess xx

Good News!! No surgery as yet !!

LOL Paddy, Ethan's cardiac nurse came out to visit today. I was a little worried about him first thing as he didn't look to clever - but he perked up after his nap.

Paddy was over the moon with him and his oxygen saturation's were 82% so she feels it will be a few more months before he needs to go in for further surgery!! We had a good catch up it was lovely and he even gave her a kiss before she left.

wooooooooooo hoooooooooooooooo !!

title="FreeDict free online dictionary">FreeDict

If you ever have to ask yourself "Do I need an Ambulance?" You NEED an Ambulance!!

All I can say is it is the really scary and the first time I have actually cried in front of anyone when ethan has been poorly..

He just woke up screaming and unsettled we gave calpol and it didn't work so Dean brought him down he was scalding hot, floppy eyes roling back in his head, and grunting.... so I phoned ward and said Iwas coming in rang a friend to take Josh.

We drove but shouldve phoned an ambulance half way there his breathing got very slow but still grunting and seemed to be stopping or forcing it if that makes any sense...

So I rang the kids ward and said I'm going straight to a&e (it would have meant a further 5 min walk to the ward). We got to A&E after a horrible panicky drive and the woman was asking us whats his name, phone no, GP - I said what part of cardiac and not breathing properly don't u understand! (that's when i started crying) bearing in mind I ran in with him in an open baby grow (too hot!) and he was obviously ill!

Through to resus and all the stuff........... did bloods, exg & chest x-ray they were OK but his oxygen saturations were down to 66% heart rate 170... really bad recession - very bad! so he needed oxygen. They gave him a subutimol inhaler and it seemed to help. So we were taken up to the ward.

He still wasn't right the next day pale mottled and some slight sub and intercostal recession (where the child is working hard to breathe and the chest is pulling in) and a tracheal tug so we were kept in again. and he is much better today so we are home now.

It was like a little reunion, my lovely friend Donna is in with lily and there is another freeman bod in!

NB I did apologise to the receptionist when Ethan was ok, to be fair to her she said she didn't hear my say cardiac, so can only presume it was my tonsillitis lisp(as i called it!) but when she saw his ng tube she realised..and took me seriously.

The last thing I would say for anyone who has a child with chd or other condition is to make sure you know all their baseline/usual information eg heartrate etc... fortunately I do but although I can remember all his medications I couldn't remember his exact dosages.. Think I may write up some index cards with the info on and put them in the change bags.

Oh and the cardiac nurse isn't coming out on Monday now due to all our excitement!

What a Week!

Gosh its been a funny week, Ethan has had a wheeze for about 3 weeks now it hasnt got any better although he hasnt been unhappy he is on phrophylatic antibiotics (since october to keep bugs away) and he has still caught this.

Its got worse over th last few days where i have had to give him calpol to make him comfortable... it seems to hurt him and he is now coughing.. - he has even been patting his chest now like i do to help him cough !

he is abit clammy and definately off his food we have started giving him half strength milk a couple days ago as he had diorhea and vomited a couple of times his wheeze is stronger and u can feel it when u hold him round his chest - if that makes any sense...sometimes it whistles rather than wheezes!!

Didn't want to go to our GP as they are worse than useless and are like rabbits in the headlights with Ethan!

Anyhow I took him a week ago last Monday and we got some amoxicillin, I rang our Cardiac Liaison Nurse who said yes get some AB's but also that she wants to come and see us about his next operation :-O !! So after a week on Amoxicillin which after a week had made no difference as you could still hear him wheezing across the room.

Just phoned GP again Monday - and he very sensitively told me it must be viral and it doesn't matter whats wrong with his heart if its viral and he is going to drop dead tomorrow there's nothing they could do !! But he said to bring him up which we did and even he said his chest is really really crackly and got given some new antibiotics Erythromycin. Tuesday Night Ethan was so ill we nearly phoned an ambulance, he was screaming for ages, really ill, chest pulling in etc.. but he settled after an hour.

Anyway, we have had this last week, fever, cold sweats, nose bleeds, a very very grumpy boy who isn't sleeping at night and constantly rubbing his head?! oh and yesterday an all over body rash (so after this many weeks I think we can assume its a virus!) and one very anxious tired mum !!

So by Thursday I'd had enough and took him to the Freeman to get checked by the wonderful Doctor Spencer.. they've taken bloods to check his immunity again as his immunogloblin is low and do an all round screen for other bugs.

OH AND ARGHHHHHHHHH AT PADDY THE CLN COMING OUT ON 9TH MARCH !!

Life goes on

Its February already !! I cant believe it!

Ethan was in hospital last week after fitting, it was a febrile convulsion they decided but were unable to find an infection so we just had to mark it down to experience. I have always said Im just on this side of sane, this side of hysteria, and it just takes one thing to push me over!

This week I've learnt that no matter how angry at the world you are because your baba has chd - the world continues around you. Well, I knew that already Xmas came and went when Ethan had his first surgery and everyone was celebrating around us but now I **think** I feel more ready to be part of the world.

I feel like Ive been on autopilot for so long that I need to start and try to take time to enjoy our life. And not worry so much, He needs a family that can relax and have fun as much as we all do!

Paddy, Ethans Cardiac Liason Nurse wants to come out this month and assess him... to see if he needs to be booked in for a cardiac catheter.....arrrghhh... might give it a week or so before I ring I think !!!!

The Day I became a Heart Mother

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile
.You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

Whats it like to have a child with CHD?

You passed me in the shopping mall...(You read my faded tee)
You tapped me on the shoulder...Then asked...`"What's a CHD?"
I could quote terminology...There's stats that I could give...
But I would rather share with you...A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held her...(I'd waited so long)
It's knowing that I need...to help her grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking her sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do her nails look blue?It's cringing inside... at what she's been through.
It's dozens of call to her pediatrician...(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching her sleeping...her breathing is steady...
It's surgery day...and I'll never be ready.
It's handing her over...( I'm still not prepared...)
It's knowing that her heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that she'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching her chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...It's changed our family...
This is what we face each day...This is...a CHD