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.
Thursday, 31 December 2009
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
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
Wednesday, 11 November 2009
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
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
Sunday, 8 November 2009
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.
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.
Monday, 12 October 2009
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...
We should have had the date last week but nothings arrived as yet...
Monday, 28 September 2009
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
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
Tuesday, 15 September 2009
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
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
Monday, 29 June 2009
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
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
Wednesday, 13 May 2009
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 !!
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 !!
Thursday, 7 May 2009
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.
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.
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