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how to face an uncertain future

(14 Posts)
golemmings Sun 16-Oct-11 22:34:27

Partly inspired by cup of tea's thread about the gorgeous Bea and by cbeebies' post, how do folk manage uncertainty?

DS is 10 days old and following a difficult birth and fitting he was admitted to the neonata unit at 3 hours old. Diagnosis is mild encephalopathy but we're waiting on an mri scan to confirm the damage that might have been done.

I'm gutted but I have no idea how to deal with the possible implications of what might be wrong with my beautiful boy. DH is managing in his own way - ie he'll ignore it until he has to deal with it. I just keep crying. All our friends have suddenly evaporated, my mum is very ill and I just feel so alone.

How do I move on from here?

JJWMummy Sun 16-Oct-11 22:50:18

Firstly, Congratulations on your beautiful baby boy.

I have no direct experience with encephalopathy, but I do have experience with brain damage, my only advice at this stage would be to take each day as it comes and enjoy every minute of your little man being just that, little, they grow so quickly.

Everyone deals with these things differently and DH will open up when he's internalised everything, no easier for you though I know.

As for friends, there will be those for whom it is just to difficult to approach you, they don't know what to say or how to say it, and unfortunately those who will dissapear, those who are true to you will be there and you will value them immensely.

Don't try to move on just yet, just deal with things as they happen.

Once again Congrats.

shaz298 Sun 16-Oct-11 22:52:26

1) You spend as much time as you can with him, you sing to him, read to him and do all the things you would for any precious newborn. You may have to think outside the box a little and adapt how you do things but you can do it. It can be lovely to write a book to him and ask others to contribute, i.e nurses etc.

My DS was in NICU for 10 weeks and I did all of that and kept my tears for when I was not in the NICU with him. It is hard, beleive me I know. DS prognosos was that he wouldn't make it to birth, then that he wouldn't live a month and then that he would never walk, talk or have any quality of life.

He is a happy little chappie at mainstream school and is the sunshine in my day. Life hasn't been easy and he does have some disabilities ( cognitively on a parr with his peers though inspite of us being told his brain should be 'mush'!) but he made it and he's happy and now is reasonably healthy. He is our little miracle ( well not so little anymore)

2) You grab hope by the horns and you don't let go for anything or anyone. Drs are fab, but they are human and they don't know it all.

3) You do not be afraid of the wires/tubes. Work with/around them and do as much of his care as you can.

4) When you talk/sing/read to him don't talk to him like he is ill and worrying you. Talk to him as you imagined doing, before he was born.

5) Do not be afraid to laugh. It's good for you and for him smile

All his experiences now, with you being the best mum you can for him, will help him in whatever journey he faces - be that one with lots of hospital appointments or one where his health is good. He will be sure in your love for him and your pride in him.

I survive because: I was told he would not live.Every moment for us is therefore a bonus.

Sorry you are having to go through this. Try, if you can, to keep up your communication about how you feel with your hubby. We struggled with this and kind of shut off as that was much easier to deal with. We are still together and do still love each other but it takes more work whe you have a child who is unwell. So my last recommendation would be ; Look after each other.

Hugs xxxxxx

anonandlikeit Sun 16-Oct-11 22:56:31

Hi golemmings, firstly congratulations on the birth of your ds!
I know its a cliche but it really is one day or one step at a time.
On top of all the worry & trauma you also have all the hormones to deal with so be kind to yourself.
However you feel, tearful, angry, upset, hysterical.. its all OK & perfectly normal.
In all this uncertainty and trauma please try to enjoy your ds being a baby, do the usual stuff, take lots of photos & videa, have lots of cuddles & be a proud mum. Whatever the future holds those first photos & memories will be lovely to look back on.
Do you have any other other family close by? As for friends, you will ind out who the true friends are & initially they may not know what to say & how to react, they may need a little time too. If you feel you need to talk to a friend pick up the phone they may be trying to give you space as they dont know what you really need.
FWIW I found friends without children to be the most supportive during ds2's early days & months & even now (9 yrs on) they are the closest to us as a family.
Take care x

coff33pot Sun 16-Oct-11 23:21:34

Congratulations on the birth of your lovely boy!

I have no knowledge and have never had such an experience and I cannot begin to understand the turmoil you must be in.

Everyday is special, he knows you are there, he can smell you and he can feel your touch, you have a very special boy.

I am sending you the biggest hug I possibly can xxxx

TheNinjaGooseIsOnAMission Mon 17-Oct-11 07:28:25

congratulations! As the others have said, one day at a time, just get through today and deal with todays issues. Do try not to google, google really isn't your friend on things like this. It is worth seeing if there's a support group on line, dd3s has been a lifeline over the years. I know it's not the same as rl friends but there's always someone here ready to lend an ear.

EllenJaneisnotmyname Mon 17-Oct-11 19:40:41

I didn't have the immediate knowledge of problems like you have had, but my way of coping and staying sane has always been to only look ahead to the next milestone. That maybe the next feed, or the next day or the next month. Lots of love to you and your little boy. xx

LaDolcheRyvita Tue 18-Oct-11 11:35:19

Of course you keep crying darling. That's understandable. shaz298 is right, you have your beautiful boy here at last and you need lots of support, all three of you to face the future. By that I mean, today and tomorrow and each day as it comes. Try not to think too far ahed into the future right now. Do what you must right now. Enjoy your new baby and support each other.

golemmings Wed 19-Oct-11 22:29:50

Thank you all. I'm beginning to understand the one day at a time thing. Every one who meets Alex comments on how alert and engaged he is and there is a bit of me, well almost all of me that believes that there is nothing wrong with him. I managed to get through all of yesterday without crying.

We phoned the neonatal team to discuss his consultants letter and the registrar was lovely, talking us through the technical jargon and there seemed to be very little in there about which to be concerned.

Today Alex had his mri scan. He was brilliant, the team were great and now we sit tight until January to meet with his consultant. I'm assuming if they don't want to see us for 3 months then any problems he might have are unlikely to be catastrophic.

DH has decided he would rather not disclose info re Alex until we actually have facts and evidence to go on. I get where he's coming fr om but I am not an ostrich and I think I need to talk it through. mind you i'm managing fine on giving out edited highlights to friends at toddler group etc and when our close friends finally materialise, I suspect i'll either have sorted my head out or i'll be too bitter to want to confide in them. Either way I think it solves the problem!

springlamb Wed 19-Oct-11 23:07:29

Congratulations on the birth of your son!
My DS (17 next month) sustained his brain injury during birth and had a very rocky neonatal period.
I think one of the hardest things to 'get' at this stage is that the prognosis is unlikely to be clear for some time yet.
In our case, whilst I had MRI and EEG results in black and white, the only real evidence I had on how/whether DS had been affected came came when he made or missed milestones. The smile and the laugh were fab!
At your stage I simply wanted to get home with DS and DH (DS was our first child) and just have a 'babymoon' period where we could get to know him.
It was clear there were difficulties but apart from physio and OT (I decided not to see anyone else until the February (so he was 3 months). Luckily DS had no breathing/feeding/other acute problems so we were able to do this.
Possible brain injury is a strange thing - when DS was 10 months we had a long list of stuff he would never do. Lots of which he has done. DS has friends who, on paper, should be less able but are not and vice versa.
It is really hard because you want answers, but they will be some time coming, so you need to find a way to slow down and settle.
I do think that probably at some point you will want to talk about your difficult birth experience from your own perspective rather than baby's, so be prepared for this and if you begin to dwell too much on it, talk to someone sooner rather than later.
Good luck!

golemmings Thu 20-Oct-11 03:14:41

Thank you all. I'm beginning to understand the one day at a time thing. Every one who meets Alex comments on how alert and engaged he is and there is a bit of me, well almost all of me that believes that there is nothing wrong with him. I managed to get through all of yesterday without crying.

We phoned the neonatal team to discuss his consultants letter and the registrar was lovely, talking us through the technical jargon and there seemed to be very little in there about which to be concerned.

Today Alex had his mri scan. He was brilliant, the team were great and now we sit tight until January to meet with his consultant. I'm assuming if they don't want to see us for 3 months then any problems he might have are unlikely to be catastrophic.

DH has decided he would rather not disclose info re Alex until we actually have facts and evidence to go on. I get where he's coming fr om but I am not an ostrich and I think I need to talk it through. mind you i'm managing fine on giving out edited highlights to friends at toddler group etc and when our close friends finally materialise, I suspect i'll either have sorted my head out or i'll be too bitter to want to confide in them. Either way I think it solves the problem!

golemmings Thu 20-Oct-11 03:32:07

Thank you for your positive story spring lamb. What you say makes an awful lot of sense. I'm trying not to compare Alex to his sister. He is his own person and will meet his milestones in his own time. At the same time, him being on s similar development curve to her opens his horizons so much.

You're also right about wanting to understand my labour. Our hospital offers a service where you can talk through your labour. It can't be less than 6 weeks after birth though. One of my favourite mw is part of the team who offers it so we have already agreed that I'll go and talk to her next month. 6 weeks seems a long time to wait but I guess its to protect mws from hormonal new mothers. It's a long time to keep it trundling around in your brain though wondering if it could have been different. I guess that is somewhere you don't go if you wish to regain your danity

golemmings Thu 20-Oct-11 03:33:26

Or even retain your sanity.

springlamb Thu 20-Oct-11 18:08:18

I suspect you won't be able to help going there golemmings. And then you put it all back in the box, lock it up at the back of your mind and get on with it. Then one day you realise you are getting on with it, and the kids are actually OK and you yourself are actually OK. You might need a bit of help to get there, that's fine. The meeting is probably a good idea.

I spent so much time wondering if it could be different...after 17 years I've come to the conclusion it wasn't actually meant to be different. The path our lives have followed was meant to happen (just as well really, eh!).
You'll get there. Take it easy on your family and yourself.

Seven years after DS, I had something of a surprise in the form of a baby girl. Now she really was scary and mind-boggling.

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