Discussion & help on depression & mental health related issues

[Ashtonian]

Taking the baby back into hospital this week for another heart procedure. the first one we hadn't a clue abut a year ago, literally got rushed to Alder Hey from Arrow Park and within 24 hours i was carrying her down to theatre. It saved her life but sadly it hasn't worked properly so we have to take her in again.

to be honest i have mixed feelings at the minute, i'm not as worried as last time because now she is bigger there is less risk, but it is having to take her there again which gets me. Plus the fact i am working all week so it will be work work work work take baby to have a procedure. I am worried and a tad bit scared as well that it won't work again, and it has to go down more serious routes in the future to fix the problem. Its horrible knowing all you can do is hope it works, rather than be able to give them a spoonful of medicine and see them get better.

One positive is that she looks and acts perfectly fine, like there is nothing wrong with her. First time out she should have been sickly and weak, instead she was kicking the doctors and babbling away, so she definitely is a fighter lol But yeah, it isnt nice to go through this as a parent and its akward to explain it to other people, should i sound more worried to them? should i be breaking down? Should i be off with stress or whatever already? Does it look bad i am in work rather than at home? etc

Sounds like i'm rambling and i probably am, jsut a bit odd leading up to it, i know last time it didn't hit me until i was carrying her down to theatre and all the bottled emotion seemed to come out when it all became real. I can envisage it happening again this time.

Hi mate, I do voluntary support work for the charity Scope at Alder Hey, supporting parents who find themselves in circumstances such as you find yourself in at the mo. Everything you have described above is completely normal for you to feel - fear, anxiety, worry and even guilt. My youngest lad is disabled and was very sick for the first 18 mths of his life, spending a lot of time in Alder Hey, so I know where you are coming from.

My advice to you would be to utilise any support from your family and friends that is offered to you, even if it only takes a small load off your shoulders. Also Alder Hey have " Mac House " which is a block of comfortable small rooms for parents to stay in over night, if their child is going to be in for a while . Being able to stay there takes a massive weight off too, as it means one parent can be there all the time without having to worry about getting home etc.

Scope also provides a " befriending " service, to help support parents at home. This is quite simply another parent volunteer who is shoulder to lean. Each parent volunteer has a child or children with their own problem whatever that may be, so they know what you're going through - they've been there.

My thoughts are with you and you're family mate at this incredibly difficult time for you all x[/QUOTE]
cheers mate, that is all very helpful. i know my other half gets far more emotional about it all than me, and always fears the worst each time. that is probably why i kinda bottle it all up, because otherwise its no good to anyone if both of us are moping around. I know she will be staying in wither her during the time in, the one good thing is that we live a lot more local than we did the first time so i can go home reluctantly rather than fussing around a sleeping child.

i remember speaking to other parents the last time and it was just so humbling being there with them, considering the experience we went though, and the wonderful doctor talking about her dying over and over the first time, speaking to other parents who were in worse situations than us was just that, humbling. How they had the mental strength like that and there was us feeling worse for wear lol

I'll go home tonight and suggest that scope thing for the future mate yeah, perhaps the other half might want to take that up as we will be going back and forth to the hospital, even for routine check ups. I know since last year being in touch with my dad and sisters for the first time in my life, that it had been nice to have that from afar, and i know my father in law is coming to the hospital on the day to help us, with her mum minding our son whilst she is in.

hope your son is better now mate as well!

 

[TheAlmightyFloater]

Just throw this in here just to type it out.

Taking the baby back into hospital this week for another heart procedure. the first one we hadn't a clue abut a year ago, literally got rushed to Alder Hey from Arrow Park and within 24 hours i was carrying her down to theatre. It saved her life but sadly it hasn't worked properly so we have to take her in again.

to be honest i have mixed feelings at the minute, i'm not as worried as last time because now she is bigger there is less risk, but it is having to take her there again which gets me. Plus the fact i am working all week so it will be work work work work take baby to have a procedure. I am worried and a tad bit scared as well that it won't work again, and it has to go down more serious routes in the future to fix the problem. Its horrible knowing all you can do is hope it works, rather than be able to give them a spoonful of medicine and see them get better.

One positive is that she looks and acts perfectly fine, like there is nothing wrong with her. First time out she should have been sickly and weak, instead she was kicking the doctors and babbling away, so she definitely is a fighter lol But yeah, it isnt nice to go through this as a parent and its akward to explain it to other people, should i sound more worried to them? should i be breaking down? Should i be off with stress or whatever already? Does it look bad i am in work rather than at home? etc

Sounds like i'm rambling and i probably am, jsut a bit odd leading up to it, i know last time it didn't hit me until i was carrying her down to theatre and all the bottled emotion seemed to come out when it all became real. I can envisage it happening again this time.

Hi mate, sounds like a rough time but it also sounds like there is a lot of hope. Your kid sounds tough. The news is full of these stories where babies had all sorts wrong with them from paralysis to brain injuries and they defy the odds and learn to ride a bike or start school on time at 5 years old or even just learning to talk. Your girl will be one of them mate, and I'm sure she (and you) are in the thoughts and prayers of many people.

Can't top @COYBL25 excellent advice because he's got first had experience here. Just want to say that you shouldn't worry about looking/acting stressed or emotional to other people. Nobody will be thinking about that, they're all just hoping that it turns out ok. People handle stress in different ways so just do what you feel is best for your own mental health.

 

[The Esk]

Just want to say what a good lad @COYBL25 is, always here to offer good advice and carries that on in real life.

Well done mate, inspirational.

 

[COYBL25]

Hi mate, I do voluntary support work for the charity Scope at Alder Hey, supporting parents who find themselves in circumstances such as you find yourself in at the mo. Everything you have described above is completely normal for you to feel - fear, anxiety, worry and even guilt. My youngest lad is disabled and was very sick for the first 18 mths of his life, spending a lot of time in Alder Hey, so I know where you are coming from.

My advice to you would be to utilise any support from your family and friends that is offered to you, even if it only takes a small load off your shoulders. Also Alder Hey have " Mac House " which is a block of comfortable small rooms for parents to stay in over night, if their child is going to be in for a while . Being able to stay there takes a massive weight off too, as it means one parent can be there all the time without having to worry about getting home etc.

Scope also provides a " befriending " service, to help support parents at home. This is quite simply another parent volunteer who is shoulder to lean. Each parent volunteer has a child or children with their own problem whatever that may be, so they know what you're going through - they've been there.

My thoughts are with you and you're family mate at this incredibly difficult time for you all x

cheers mate, that is all very helpful. i know my other half gets far more emotional about it all than me, and always fears the worst each time. that is probably why i kinda bottle it all up, because otherwise its no good to anyone if both of us are moping around. I know she will be staying in wither her during the time in, the one good thing is that we live a lot more local than we did the first time so i can go home reluctantly rather than fussing around a sleeping child.

i remember speaking to other parents the last time and it was just so humbling being there with them, considering the experience we went though, and the wonderful doctor talking about her dying over and over the first time, speaking to other parents who were in worse situations than us was just that, humbling. How they had the mental strength like that and there was us feeling worse for wear lol

I'll go home tonight and suggest that scope thing for the future mate yeah, perhaps the other half might want to take that up as we will be going back and forth to the hospital, even for routine check ups. I know since last year being in touch with my dad and sisters for the first time in my life, that it had been nice to have that from afar, and i know my father in law is coming to the hospital on the day to help us, with her mum minding our son whilst she is in.

hope your son is better now mate as well![/QUOTE]


Cheers mate, he hasn't been in hospital for the best part of three years now, so I think we're through it.

Talking to the other parents on the ward is fantastic too, as by default you almost form your own in house support network and it also makes you realise that you're not alone too. The new hospital makes it a bit more difficult for parents to socialise with each other due to it all being private rooms, rather than big open wards, so try not to lock yourselves away too much and mingle as much as possible . I've known lots of parents make really good friends through being at Alder Hey and as you say the mental strength of some of the parents there is nothing short of incredible.

 

[COYBL25]

Just want to say what a good lad @COYBL25 is, always here to offer good advice and carries that on in real life.

Well done mate, inspirational.

No praise needed mate, we're all in this togther

 

[The Esk]

No praise needed mate, we're all in this togther

Well you and many others do a great job on here helping blues in ways we probably never really realise.

 

[Ashtonian]

Hi mate, sounds like a rough time but it also sounds like there is a lot of hope. Your kid sounds tough. The news is full of these stories where babies had all sorts wrong with them from paralysis to brain injuries and they defy the odds and learn to ride a bike or start school on time at 5 years old or even just learning to talk. Your girl will be one of them mate, and I'm sure she (and you) are in the thoughts and prayers of many people.

Can't top @COYBL25 excellent advice because he's got first had experience here. Just want to say that you shouldn't worry about looking/acting stressed or emotional to other people. Nobody will be thinking about that, they're all just hoping that it turns out ok. People handle stress in different ways so just do what you feel is best for your own mental health.

cheers mate, that is all very helpful. i know my other half gets far more emotional about it all than me, and always fears the worst each time. that is probably why i kinda bottle it all up, because otherwise its no good to anyone if both of us are moping around. I know she will be staying in wither her during the time in, the one good thing is that we live a lot more local than we did the first time so i can go home reluctantly rather than fussing around a sleeping child.

i remember speaking to other parents the last time and it was just so humbling being there with them, considering the experience we went though, and the wonderful doctor talking about her dying over and over the first time, speaking to other parents who were in worse situations than us was just that, humbling. How they had the mental strength like that and there was us feeling worse for wear lol

I'll go home tonight and suggest that scope thing for the future mate yeah, perhaps the other half might want to take that up as we will be going back and forth to the hospital, even for routine check ups. I know since last year being in touch with my dad and sisters for the first time in my life, that it had been nice to have that from afar, and i know my father in law is coming to the hospital on the day to help us, with her mum minding our son whilst she is in.

hope your son is better now mate as well!

@COYBL25

25 Cheers mate, he hasn't been in hospital for the best part of three years now, so I think we're through it.

Talking to the other parents on the ward is fantastic too, as by default you almost form your own in house support network and it also makes you realise that you're not alone too. The new hospital makes it a bit more difficult for parents to socialise with each other due to it all being private rooms, rather than big open wards, so try not to lock yourselves away too much and mingle as much as possible . I've known lots of parents make really good friends through being at Alder Hey and as you say the mental strength of some of the parents there is nothing short of incredible.

[/QUOTE]

I'm the type who tends to not really show emotion so you can see why a lot of it kinda wooshes round in my head rather than expressing it to others lol I think as well what kinda drags you back a little bit is you tell yourself that it will be fine and it will work and then 12 months alter when you hear the bad news again then it hits you a little bit, i worry that if there is a next time for it then the outcome will be much more serious in terms of trying to fix the issue.

but at the same time i know she will be fine, just little things like her favourite word being daddy at the minute, hearing that going in there is far worse than the first time of taking her at such a young age.

but thank you for the kind words, means more than it probably appears. I tend to use this thread as a outlet for typing stuff in my head anyway, its nice to be able to type something out rather than feel akward trying to tell people. It is a nice release, although its mixed emotions so far haha from meeting my dad for the first time to this all within three months. another three months and i could have met my two sisters who i didn't know existed until last year, then 3 months after that, meet my grandparents for the first time.

So perhaps this is just a prelude to all of that, postive things to come this year, just need to get over one small bump in the road

 

[kithnou]

Just throw this in here just to type it out.

Taking the baby back into hospital this week for another heart procedure. the first one we hadn't a clue abut a year ago, literally got rushed to Alder Hey from Arrow Park and within 24 hours i was carrying her down to theatre. It saved her life but sadly it hasn't worked properly so we have to take her in again.

to be honest i have mixed feelings at the minute, i'm not as worried as last time because now she is bigger there is less risk, but it is having to take her there again which gets me. Plus the fact i am working all week so it will be work work work work take baby to have a procedure. I am worried and a tad bit scared as well that it won't work again, and it has to go down more serious routes in the future to fix the problem. Its horrible knowing all you can do is hope it works, rather than be able to give them a spoonful of medicine and see them get better.

One positive is that she looks and acts perfectly fine, like there is nothing wrong with her. First time out she should have been sickly and weak, instead she was kicking the doctors and babbling away, so she definitely is a fighter lol But yeah, it isnt nice to go through this as a parent and its akward to explain it to other people, should i sound more worried to them? should i be breaking down? Should i be off with stress or whatever already? Does it look bad i am in work rather than at home? etc

Sounds like i'm rambling and i probably am, jsut a bit odd leading up to it, i know last time it didn't hit me until i was carrying her down to theatre and all the bottled emotion seemed to come out when it all became real. I can envisage it happening again this time.

All the best to the little angel mate. She'll be fine.

How are you supposed to act and feel? Who knows mate? Who cares what others think.

You're not rambling at all mate. If I can be honest, it may be helping many in here to appreciate just how good things may be for them when they have to read posts like yours.

If it helps you to share, then share away. Know that you are also helping at least one other person somewhere out there in the world in some way when they read this. It's not the reason you are posting it, but I hope that helps you a wee bit.

Kiss your little one. xx

 

[kithnou]

Hi mate, I do voluntary support work for the charity Scope at Alder Hey, supporting parents who find themselves in circumstances such as you find yourself in at the mo. Everything you have described above is completely normal for you to feel - fear, anxiety, worry and even guilt. My youngest lad is disabled and was very sick for the first 18 mths of his life, spending a lot of time in Alder Hey, so I know where you are coming from.

My advice to you would be to utilise any support from your family and friends that is offered to you, even if it only takes a small load off your shoulders. Also Alder Hey have " Mac House " which is a block of comfortable small rooms for parents to stay in over night, if their child is going to be in for a while . Being able to stay there takes a massive weight off too, as it means one parent can be there all the time without having to worry about getting home etc.

Scope also provides a " befriending " service, to help support parents at home. This is quite simply another parent volunteer who is shoulder to lean on. Each parent volunteer has a child or children with their own problems whatever that may be, so they know what you're going through - they've been there.

My thoughts are with you and you're family mate at this incredibly difficult time for you all x

Amazing as always are you my man.

 

[COYBL25]

@COYBL25

I'm the type who tends to not really show emotion so you can see why a lot of it kinda wooshes round in my head rather than expressing it to others lol I think as well what kinda drags you back a little bit is you tell yourself that it will be fine and it will work and then 12 months alter when you hear the bad news again then it hits you a little bit, i worry that if there is a next time for it then the outcome will be much more serious in terms of trying to fix the issue.

but at the same time i know she will be fine, just little things like her favourite word being daddy at the minute, hearing that going in there is far worse than the first time of taking her at such a young age.

but thank you for the kind words, means more than it probably appears. I tend to use this thread as a outlet for typing stuff in my head anyway, its nice to be able to type something out rather than feel akward trying to tell people. It is a nice release, although its mixed emotions so far haha from meeting my dad for the first time to this all within three months. another three months and i could have met my two sisters who i didn't know existed until last year, then 3 months after that, meet my grandparents for the first time.

So perhaps this is just a prelude to all of that, postive things to come this year, just need to get over one small bump in the road [/QUOTE]


Ps on a practical note, one of the most common things I hear from parents is the immense cost to them of having a child in Alder Hey for a long time.

Its scandalous that there's only one hospital cafe open to the public and the rest is provided by Costa Coffee and WH Smith etc, who charge motorway service prices within the hospital !

There's a massive Sainsbury facing the main entrance and also blocks of shops on two sides of the hospital, who have everything from Newsagents, to takeaways. I found that walking to the shops helped me clear my head, even if for a short time.

Also take plenty to read or an iPad, as there'll be long periods of doing nothing !

 

[Ashtonian]

Ps on a practical note, one of the most common things I hear from parents is the immense cost to them of having a child in Alder Hey for a long time.

Its scandalous that there's only one hospital cafe open to the public and the rest is provided by Costa Coffee and WH Smith etc, who charge motorway service prices within the hospital !

There's a massive Sainsbury facing the main entrance and also blocks of shops on two sides of the hospital, who have everything from Newsagents, to takeaways. I found that walking to the shops helped me clear my head, even if for a short time.

Also take plenty to read or an iPad, as there'll be long periods of doing nothing !

Aye i have noticed that. i know last time it was around christmas believe it or not and we tended to be living out of the sayers and eton road chippy for the time we were in which was obviously not good or healthy for us. the plan is to take a packed lunch for the day just whilst we are waiting for her to come back out and then probably walk down and get something from the sainsburies later on. although i know from last time it took a lot of convincing to get the other half to eat whilst we were there, be nice if i can send her down if she is staying in during the night.

I haven't checked the parents room out yet on the ward. We had a little tour during the pre op last week but i know the last time we were in they had a room with kettle / microwave etc so anything like that will be a big help. Even if it just means rustlers and cups of coffee for the weekend lol

 

[BiggyRat]

Just throw this in here just to type it out.

Taking the baby back into hospital this week for another heart procedure. the first one we hadn't a clue abut a year ago, literally got rushed to Alder Hey from Arrow Park and within 24 hours i was carrying her down to theatre. It saved her life but sadly it hasn't worked properly so we have to take her in again.

to be honest i have mixed feelings at the minute, i'm not as worried as last time because now she is bigger there is less risk, but it is having to take her there again which gets me. Plus the fact i am working all week so it will be work work work work take baby to have a procedure. I am worried and a tad bit scared as well that it won't work again, and it has to go down more serious routes in the future to fix the problem. Its horrible knowing all you can do is hope it works, rather than be able to give them a spoonful of medicine and see them get better.

One positive is that she looks and acts perfectly fine, like there is nothing wrong with her. First time out she should have been sickly and weak, instead she was kicking the doctors and babbling away, so she definitely is a fighter lol But yeah, it isnt nice to go through this as a parent and its akward to explain it to other people, should i sound more worried to them? should i be breaking down? Should i be off with stress or whatever already? Does it look bad i am in work rather than at home? etc

Sounds like i'm rambling and i probably am, jsut a bit odd leading up to it, i know last time it didn't hit me until i was carrying her down to theatre and all the bottled emotion seemed to come out when it all became real. I can envisage it happening again this time.

We spend all our lives building resilience and defences and the bluddy kids just bypass them all! It cuts deep.

I've sat in an Ambulance with my eldest...years ago mind...and I can tell you, while they'll get to you when in need, they can also help you find deeply hidden reserves of resilience & strength that you may not know you had.

I wish you & your babe a successful op & hope she's back out on the playground post haste!!!

 

[blueloon]

Just throw this in here just to type it out.

Taking the baby back into hospital this week for another heart procedure. the first one we hadn't a clue abut a year ago, literally got rushed to Alder Hey from Arrow Park and within 24 hours i was carrying her down to theatre. It saved her life but sadly it hasn't worked properly so we have to take her in again.

to be honest i have mixed feelings at the minute, i'm not as worried as last time because now she is bigger there is less risk, but it is having to take her there again which gets me. Plus the fact i am working all week so it will be work work work work take baby to have a procedure. I am worried and a tad bit scared as well that it won't work again, and it has to go down more serious routes in the future to fix the problem. Its horrible knowing all you can do is hope it works, rather than be able to give them a spoonful of medicine and see them get better.

One positive is that she looks and acts perfectly fine, like there is nothing wrong with her. First time out she should have been sickly and weak, instead she was kicking the doctors and babbling away, so she definitely is a fighter lol But yeah, it isnt nice to go through this as a parent and its akward to explain it to other people, should i sound more worried to them? should i be breaking down? Should i be off with stress or whatever already? Does it look bad i am in work rather than at home? etc

Sounds like i'm rambling and i probably am, jsut a bit odd leading up to it, i know last time it didn't hit me until i was carrying her down to theatre and all the bottled emotion seemed to come out when it all became real. I can envisage it happening again this time.

I feel for you mate, it ain't easy that's for sure, I can still remember the feeling I had after rushing my baby daughter into hospital and driving away later leaving her there, horrible feeling and that was 28 years ago! Many people will be sympathetic to your situation and not judge you on how you chose to react to it. Next time I took her to hospital was a few years later for adenoids, grommets , tonsils operation and I slept on a camp bed next to her bed. Walked her down the aisle last year. Good luck, hope you can get similar result in the future.

 

[Ashtonian]

I feel for you mate, it ain't easy that's for sure, I can still remember the feeling I had after rushing my baby daughter into hospital and driving away later leaving her there, horrible feeling and that was 28 years ago! Many people will be sympathetic to your situation and not judge you on how you chose to react to it. Next time I took her to hospital was a few years later for adenoids, grommets , tonsils operation and I slept on a camp bed next to her bed. Walked her down the aisle last year. Good luck, hope you can get similar result in the future.

thats lovely mate cheers.

The first time was even more ohhrilbe for the fact of over 24 hours of finding out to taking her down and when she woke up i was in the empire watching a pantomime! lol

It was a very difficult thing we had, having two kids and one of them had been really looking forward to going for weeks on end, we had noone to take him on the day (considering it all happened within 24 hours, no-one had a clue before that) so i had to reluctantly take him to go and see it, otherwise he would have been crushed to not go, and obviously think his sister came before him. Horrible experience for me, just sat there worrying, on the phone every chance i could, it was obviously positive news but still hate the fact i wasn't there. I guess as a knock on effect i have developed such a strong bond with her since then that i have always tried to make up for it. I can guarantee she will be shouting daddy going into the theatre and after she wakes up, even when she wakes up with a cough during the night she shouts me. So yeah, a hard choice back then on a personal level has spurred me on to be closer to her as a way to make it up to her.

again a ramble lol my little dark secret about last time, which i do regret but as mucfh as it was a minor thing not going to the empire, it would have been massive to my son so yeah, we tried to get someone else to go, just ran out of family members available in the end

 

[kithnou]

I can guarantee she will be shouting daddy going into the theatre and after she wakes up, even when she wakes up with a cough during the night she shouts me.

Beautiful mate