Hi, I’m at a bit of a loose end and don’t seem to be coping as well as I’d like to; 6weeks ago our son (Arthur) was born just over 5 weeks early and despite several attempts to get him ready to come home he had top have a minor op (under general anaesthetic) on his windpipe last week and we’re now back to waiting for him to get better with no real plan. All of the staff at the hospital have been fantastic and my wife seems to be doing really well (despite getting up twice a night to express).

I’m back at work (who have also been really good) where I’m not really concentrating and then get to the hospital for a couple of hours in the evening, where I can do bugger all apart from look at him or occasionally have a cuddle. Despite so many great people the last 6weeks have been really hard and I can’t currently see an end to it. I know I just need to pull my head out of my arse but don’t quite know how. Please can anyone who’s been through similar give some advice.

Finally I know it’s meant well, but ‘he’ll soon be home’, it’ll all be a distant memory’, ‘it’ll be worth it in the end’ and all the other clichés don’t seen to help!

Sorry to bitch, but I needed to vent somewhere.

Ok sounds like you don’t want all the sympathy spiel, so I will look at it from a different angle.

At this age there isn’t much you can activly do for Arthur sounds like he’s in the best place.
But your wife my seem to be doing well, but little things can make a difference has she a proper bed at the hospital or one of those fold out chair? maybe doing a night shift so she can get a decent sleep, or chat to work and see if you can start an hour or two late some mornings so she can have a shower and a decent breakfast.
Just a couple tips that my wife has mentioned when she comes home from work, as she’s a childrens nurse.

walking out of hospital with my wife, and leaving the baby behind was a very difficult moment..
My second daughter was born 4 weeks early as a result of a very traumatic birth (ruptured uterus during delivery – crash C-section – baby resuscitation – the works) and had to spend 9 days in SCBU.
We spent as much time as possible at the hospital (SCBU has no set visiting hours, as some of the babies are very poorly)

I’d suggest you try and catch up with the consultant who is overseeing Arthurs care, and ask what the plan is…

I’d also say that if Arthur isn’t really well enough to come home, then hospital (with as much support from both of you as possible) is probably the best place for him – so be firm but don’t rush them.
It costs a fortune to keep babies in SCBU so I’m sure they’ll let him out as soon as they’re happy with his progress.

Is there anyway you can pop up on your way to work, and give Arthur his morning bottle before you go to work? you’d feel a bit more settled during the day knowing you’ve seen him already.

Be vigilant for the dreaded post natal depression, both of us really suffered as a result of our experience. In hindsight I wish I’d gone to the doctors as I was genuinely broken.

All the clichés are right – as it will all soon be sorted, but I’ll agree it is a total nightmare…
Stay strong – and keep an eye on your Mrs.

Thanks luke & freeagent, my wife’s been discharged from the hospital (about 5 weeks ago) and so is driving to the hospital in the morning (it’s only 20 mins and she works there anyway) and spending all day there, I’m then going in to see them both in the evening before we both drive home for dinner. I’m making sure she’s got lunch, and sorting dinner, I’m also trying to stay on top of the housework and looking after the dog so she can concentrate on Arthur while she’s in hospital as she’s trying to establish breast feeding.

I know there’s not much I can do, but I’m still finding the sitting at home trying to work, while she’s in hospital and not being able to ask questions directly to the Dr’s etc harder than I’d ever of imagined.

try and get someone in the hospital to give you a definitive answer about how much longer it will be – having an end date will be a relief.
having recently experienced a ridiculous amount of indecision and head scratching from hospital staff, particularly doctors embroiled in fear of saying or doing the wrong thing or releasing a patient for the same reasons, I would be very bloody minded about getting the most senior doctor you can to make a judgement.

We have been in exactly the same position as you – except my wife was able to stay in the hospital on a ward. It was really difficult for me and my employers attitude was less than ideal… Having felt the same as you are expressing all I can do is agree it is distracting, stressful and all in an unhappy place to be.

Try and do something distracting – get a good mate around and have a gripe over a takeaway – certainly helped a bit for me. I also had to look after baby number 1 when our twins were in SCBU, that was also tiring but a welcome distraction.

Sounds like you are doing a top job chap. Stick at it.
Arthur is in the best place he can be at the moment and most people will understand if you are a little distracted at work.
Just make sure you and your wife are ready for him to come home when the time is right.
Hope all goes well and keep us posted.

@brakes – hard to be definitive with medical issues, especially babies as they can go up and down very quickly.

My son was born with ToF, a congenital heart disease.

The hardest part I found was the helplessness. You want to be the one to sort things out, but need to leave it to other people.

Being there for your wife (and vice versa) is about all you can do. Different people cope in different ways. My wife wanted to know all about every minute detail of his surgeries, drugs etc. I wanted an overview and to be told what I could do.

Also, make time for yourself. A short ride / walk / massage / beer can do wonders for your state of mind. It’s not selfish – you’ll cope all the better for it.

All the best to the three of you.

My youngest was born 5 weeks early and had to spend a couple of weeks in the neo natal unit. It really was very difficult, so I do sympathise with you. It can be a very lonely time.

Is there anything needing doing for his arrival in the house? Getting stuck into that can help relieve the feelings of helplessness.

We had twins in ICU at two different London hospitals.

I had a cry whilst I was with one that my wife hadn;t see yet.

The nurses advice to me was basic, to the point and I took it.

MTFU – essentialy

Be strong for your family!

Been in the same situation twice, last time was just a couple of months ago. (And it does now seem like a distant memory)

I know just how frustrated you both must feel, you just want him/her to be at home with the family. Extra hard for your wife, physically needing to feed him and not being able to.

I just tried to make things as easy as I could for my wife and to hold our baby as much as I could, which really really helped.

Hope he gets home soon!

Sounds like your trying to do the right things, My daughter was born earlier this year, when she arrived I thought brilliant she looks fine, I went home later that night when I was kicked off the post natal ward.

Following morning I arrived and Rosie had just been whisked away to NICU as her breathing was elevated and slightly eratic.

We then spent just short of 2 weeks in NICU with Rosie being treated for a chest infection. Nurses were great. Anti biotics came to an end and we thought great we will be going home soon.

Then all of a sudden the doctors had phoned another hospital and they wanted Rosie there straight away so off we went we were then told that Rosie had a heart defect called TAPVD which was very rare, cue world falling to pieces!

A week or so later Rosie went in for Major heart surgery, we walked her down at 9am and then sat on the ward until 4pm when they said we could go and see her.

She recovered very quickly and left hospital 5 days later (we couldn’t believe it!) fast forward to now and she is 3.5 months old, she can roll over ,holds her head, bears weight on her legs and is really happy. I totally forget there was ever a problem and had to stop and think about it.

Things will get better in time and hospitals don’t help they are boring and not a great environment to keep you motivated, but keep thinking of the positives like getting to hold your son and stay strong for them, until he’s out there isn’t a great deal you can do, and if you can go out for a ride it really helps to clear your head.

HTH

Also nurses and doctors really don’t like giving time scales and don’t tend to tell you anything until you are off home!

You have my sympathies, its a horrible place to be but you will get through it.

On the subject of not being able to ask questions, when in a similar situation I was advised to get a small notebook/pen and keep it with me at all times so that when these random and important questions occur you can quickly jot it down to ask when you have the chance.

Having information is how you are going to cope.

gj junior 1 was 8 weeks early and spent the first 2 weeks in a hospital 40 minutes drive away.
He’s now a big strapping bolshy 9 year old. Hang in there, Arthur WILL be home as soon as he can and then you can start to worry about sleepless nights etc 🙂

Our son was in 3 different hospitals over a 2 month period about 5 years ago. Looking back when discussing it with my wife we don’t actually know how we got through it as it feels like another lifetime and also in some ways that it happened to another couple.

My feeling from the whole experience is that you don’t know how strong you (and your partner) can actually be until you are really pushed.

Basically you don’t have a choice in the matter so you just have to hang in there (easier said than done obviously).

I was advised to get a small notebook/pen and keep it with me at all times so that when these random and important questions occur you can quickly jot it down to ask when you have the chance.

Having information is how you are going to cope.

this^^^ is great advice. information keeps you sane, otherwise you’re just wondering and waiting. or fretting about what you’ve read on the internet.

Yes! Stay away from the internerd! People only post about things that have gone wrong not the 99.99999999999999% of cases that have no problems at all.

Hi OP,

Is this your first? Hope everything keeps going well, all the best from the BSN brood.

We’re lucky enough to have had 3 “normal” (can it ever really be described as such!) births, and even with those, it is important to remember that even when the wee one is out of the hospital, dads are bascially useless if the mother is breast feeding.

It’s a wierd, utterly and totally life changing expereince, I would suggest what you are feeling is basically echoed by most new fathers (if me and my mates can be a yardstick), amplified by what must be a quite stressful situation.

You are doing a great job, just keep being you, and all will be fine in the long run.

Kev

dads are bascially useless if the mother is breast feeding.

that is absolute bollocks.

Easy up. Maybe big_scot_nanny felt useless, I certainly did at the start. But its the little things you can do to help that mean a lot like getting up early with the baby one so mum can catch up on sleep for an hour or two. It’s a hectic jump into the deep end with the first one!

108 days in NICU for my boy. Currently 20 months old and doing really well.

Don’t be afraid to question the nurses, doctors and consultants. You’ll spend more time there with your baby than they do.

If you can at all sort it with work, try and go in for the ward round as many days a week as you can.
My daughter was in SCBU for 5 months 4 days after she was born and the ward round every day during the week gave us the chance to see what the specialist was discussing and ask him questions.
Also if they allow visiting at any time just go in and visit for a few minutes any time you’re passing. The ward staff got quite used to seeing me at 11pm or later if I’d been called out to work. There’s not much you can do at that time of night, but it’s nice to see them even if they are asleep.
HTH

Sitting here with 5 month old on my lap. She spent 4 weeks in after birth and has to have a few ops this year. Plus since she has been out we have to attend various clinics at least once a week. She’s number 3 but it was the hardest time ever, not helped by my wife having a massive breakdown when they got out of hospital. Dark, dark winter with me in the middle shouldering the lot inc full baby care for 3 weeks. It did all calm and now(just) things are finding there feet again. It will be fine and don’t forget to get as much help as you can from those you can count on. My dad helped lots and a few friends dropped meals off when I was on my knees.
It’s tough, no doubt. All the best.

The nurses advice to me was basic, to the point and I took it.
MTFU – essentialy

Any nurse that gives you that advice in that kind of situation needs to have a word with herself and be reminded of the 6 C’s. Disgraceful behaviour and deserving on that account of very little professional respect… With that kind of attitude it’s not surprising that medical staff receive abuse. In my fairly extensive patient experience of medical care professionals can be dreadful as well as excellent.

Before I get flamed worth mentioning that Mrs JAMJ is a matron, both my parents were nurses and my father a lecturer in nursing. All have/had some horror stories regarding colleagues and all would think that kind of advice extremely thoughtless and reprehensible.

that is absolute bollocks.

😆

I was looking for a nice way to say that, but no, tbf, yours was much more to-the-point.

Thanks all, it’s reassuring to know that I’m not alone in feeling totally useless and not being comfortable in not being in control.

Anyway we’ve had a fairly good day today as Arthur’s had his NG tube (feeding tube up his nose) taken out today and is on purely sucking feeds (either breast or bottle), the nurses are just waiting for the ENT specialist to agree that they can take his monitor off and then he just needs to show that he’s putting weight on and is feeding well before being ready to come home (hopefully some time in a week or two).

Here are some pics I took while having a cuddle today (it’s lovely to see him without anything on his face [NG Tube, oxygen etc]):

OP are you able to get some family/ friends in to do.some of the domestics?

After our second child arrived by emergency section a good friend deposited a flaming hugevlasagne in our hands. Enough for two meals for the adults and eldest. Two nights of no cooking was such a relief in far essier circumstances than yours. Those kinds of time savings just give you some extra downtime.

I dont feel qualified to offer any emotional guidance on this but best wishes (or more appropriate words) for a good and preferably prompt outcome and welcoming home of little one.

Looks like he is sizing you up in the fourth pic! Glad you have got some progress though.

Just wait til you get them home. Then the real hard work starts…

Been there. I’d be in the ward as much as possible, each minute is precious and I still calculate my daughter’s age in minutes (she is now over 3.6 million minutes old). 😀 …and cycle to hospital if you can.

Have a look around you too. Hospitals have too many people of all ages with pretty much no hope. It can be hard to accept but there is always someone worse off than you and if you can find any simple way, even a thought, to help them it may help get your head from that dark place. My ride home took me past the oncology unit. That sure focused my mind.

All the best.