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4 week baby in intensive care - losing my mind

(127 Posts)
Frecklesandspecs Mon 09-Dec-13 19:59:15

My 4 week baby has bronchiolitis and this morning took a turn for the worse. I took him to A and E and all the Dr s were called.
He wasn't breathing properly and they think he May have stopped breathing for a bit while waiting to see them.
Anyway he has had tubes put down him and was transferred to kings in London.

I've been at home with my other two sick kids while dh has been there during the transfer. I had planned to go and stay with him tonight but they don't have any available accomodation for parents.

I don't know what to do. Do I go and sit in the hospital ?
Stay home?
I'm really upset.

Mintyy Mon 09-Dec-13 20:18:56

Oh you poor dear thing!

I think you and dh will have to take it in turns, unless you can beg anyone to look after your other dc? Of course you can stay there all night, but you might have to sit in a chair by the bed.

When my dd was in Kings with the same illness I slept on a camp bed in her room. That was in 2001.

The consultant at Kings told me that babies always recover from bronchiolitis.

Thinking of you all.

Winterbluessummersoonish Mon 09-Dec-13 20:20:16

I think you should go, they will find space for you or you can come back much later and go again in the morning. How far away are you? My older toddler when he was 13 months was in HDU for the same thing and you do feel helpless. But being close helps, at times the doctors made me leave whilst they did things, that looked distressing but clearly essential. Thinking of you and hope you can get there and speak to a doctor.

treadheavily Mon 09-Dec-13 20:20:22

I think you should go. Babies do much better with their mums and dads nearby. X

Oh you poor things. Dd2 had it too when she was ten weeks old. We sat in chairs by the bed. How awful that you can't stay with him?

Sending him some very strong get well vibes........>>>>>>>>>

TSSDNCOP Mon 09-Dec-13 20:21:22

You poor, poor things.

As you're unlikely to sleep anyway, I'd go to the hospital and sleep on a chair. At least you're on hand, you'll go mad at home.

Get well soon mini DS. Hand holding for you OP and DH.

Go down there, take tourswlf some drinks and snacks. I really hope your little one makes a full recovery very soon. X

Yourself not tourswlf.

OfficeSupplies Mon 09-Dec-13 20:25:29

Yeah load up with snacks and drinks and take a toothbrush and camp out on the chair. You will feel better there and hopefully soon will be back in a room then home. We did this with dd when she was a few weeks old.

wintersdawn Mon 09-Dec-13 20:25:59

Go we've been at brompton with our dd and they always found us something to sleep on even if it was only a chair.

Pancakeflipper Mon 09-Dec-13 20:26:11

I stayed on a camp bed next to DS's cotbed. There was a store room with pillows and blankets for parents.
Take yourself a bottle of water, some fruit and biscuits,wipes etc.

It's a scary thing but once they start to turn a corner with with illness their improvement is great.

Rockinhippy Mon 09-Dec-13 20:30:43

I've been there with exactly this when my DD was only 10 weeks old, I did stay with her 24/7, but I only had one DC so much easier for me.

I missed how old your other DCs are, but if not tiny, I would explain to them that your baby needs you most because he's so teeny & be with him as it will make a difference.

My DD stopped breathing 3 times & it was a hellish 2 weeks where I really thought I would lose her - in the beginning I didn't sleep for over 90 hours, I just couldn't, I was too scared that she would stop breathing again & I wouldn't be there to help her, even though DH tried to take the pressure off

It was he'll, so I really really feel for you sad

My DD is now 11, she not only survived, she thrived, so your baby has the right help & is in the best place, so your baby will too - think positively & talk to him, will him to fight, he will hear you & will fight for you - mine did

flowers

BobPatSamandIgglePiggle Mon 09-Dec-13 20:33:24

DS was in nicu for a couple of weeks from birth - we weren't allowed to stay. I used to go at 7am and sit all day with him. DP saved his paternity leave til DS came home so he came in at 6, we stayed together till 9 then same again next day.

He was readmitted to the children's ward from 5 weeks for 3 weeks and i was allowed to stay on a campbed.

Same hospital but every ward seems different. Ring the ward and check (nicu were also happy for us to ring every hour or so before we went to bed to check how he'd been since we left). Your DH may be too stressed to get proper staying info.

If you can't stay DON'T FEEL GUILTY. Sometimes it's not possible. Leaving DS every night tore my heart out and wasn't helped by people saying 'wild horses wouldn't keep me away' etc. He's in the best place - this will pass and everything will be ok very soon xx

clucky80 Mon 09-Dec-13 20:40:55

Hi OP, have very recent experience of this as my 2 week old DS was rushed to hospital with pneumonia and bronchiolitis a couple of weeks ago. He was a very severe case and was on cpap in our local hospital but was having multiple occasions of stopping breathing and for up to 20 seconds at a time. He ended up being put on a ventilator and transferred to Great Ormond Street Hospital. GOSH provide parents accommodation for both parents with a child in intensive care and I've just checked the leaflet the CATS team gave us and for Kings it says 'every effort is made to accommodate you' but that the no of rooms is limited. I would definitely go and say that you don't want to leave your DC and hopefully they will do their best to find you somewhere to stay. I feel for you so much, our DS was an extreme case we were told and it was a bit up and down for him in terms of his recovery. We were home after a week though and thank god he recovered very quickly and you really wouldn't have known he was ill now. Please try and eat and rest, I was staying until 5am for alot of the nights and not eating properly and ended up having to get antibiotics for myself because I got a chest infection. We also have another DS and it is so hard balancing the needs of both kids but just accept any help you are offered x

Frecklesandspecs Mon 09-Dec-13 20:42:41

Thanks all. I Will definately try then. Just waiting for poor dh to come home. He must be exhausted. Rockin - I honestly thought I would lose him this am.
You can tell how sick he wad by how the Drs were acting. They also told me to leave the room when the tube was being inserted.

Frecklesandspecs Mon 09-Dec-13 20:45:07

Clucky he is on a ventilator too:-( I'm glad your dc is doing great now :-)

moonblues Mon 09-Dec-13 20:48:27

I'm so sorry. My 8 wk old DS was in last week with bronchiolitis. He was in a children's ward and I was able to sleep on a camp bed overnight, not sure if it's different in ITU. I would definitely go and see him, even if you can't stay. I think you would go crazy at home. My Mil came and watched my older 2, but friends were also happy to step in. Is there someone else you could ask, so you don't have to wait for your DH to come back?

LittleBearPad Mon 09-Dec-13 20:48:34

Big hug, I don't have any practical advice but I hope he gets better very soon.

beautifulgirls Mon 09-Dec-13 20:50:31

Definitely go and see him, if only for a visit. Whilst it is quite scary to see your child in such a setting it is also incredibly reassuring when you can relate to the staff and care going on for him. We were blown away by the care DD received when she was in PICU aged 19mths old. She thankfully did well though it was touch and go for her for a few days (not same problem as your little one though). Let other people do things for you and remember to eat. You will find a great support from people you know that you never knew existed - take them up on things like babysitting and shopping as they will be pleased to help if they have offered. I hope your son improves quickly.

moonblues Mon 09-Dec-13 20:51:51

Cross-posted. Do try and have something to eat and bring some drinks and snacks with you. Also I find hospitals get really cold at night, so bring a comforting jumper/coat that can double as a blanket.

Flatasawitchestit Mon 09-Dec-13 20:55:34

OP I know how you feel

My Orem baby had this last year at just 3 weeks old. We were very lucky as she stopped breathing by the time we'd got her to hospital. She was resuscitated and put onto cpap straightaway and it was horrific to watch and be told she may need intubation and transferring out.

Go be with your baby. I can't believe the ward doesn't have beds or is it nicu? We were on children's ward where all parents have pull out beds.

clucky80 Mon 09-Dec-13 21:02:50

Freckles, so sorry to hear that your DS is on a ventilator too. It looks pretty scary but it is giving their little bodies a rest and letting them recover. The staff in ITU said that there is an influx of bronchiolitis between November and March every year and there were a number of babies and kids on the ward with it when we were leaving. When you go up to the hospital maybe think about taking one of DS's blankets from home or a cuddly toy/comforter. We had one of DS's blankets with us (I had just grabbed it to wrap him in when we were waiting for the balance to arrive) and the nurses said that try really encourage parents to bring in something from home for the baby as it can be a comfort to them x

ClosedAuraOpenMind Mon 09-Dec-13 21:06:01

my DD was in hospital for 2 weeks after she was born, the first week in ICU on a ventilator. one of the things one of the lovely nurses there told me at the time was to concentrate on your baby, not all the tubes and machine. that helped me a bit

hope your little one is home soon

Hangingoninthere Mon 09-Dec-13 21:07:52

If he is on a ventilator and has a nurse with him at all times it sounds like he is in children's intensive care. This happened to my now 9 yr old ds when he was 2 weeks old. He was sedated and tube fed for a week while he recovered then another week on the normal children's ward. Prior to being transfered to intensive care he was very poorly & stopping breathing - the med team had resus trolley out ready to use. When he left hospital he was wheezy for about a month and then gradually got better. By 4 months he was fine.
It was a horrendous time while he was in hospital. I stayed at the hospital - a couple of nights when the didn't have a room I slept on a camp bed in the playroom. You can't sleep in the room with them in ICU but I was able to sit next to him as long as I wanted.
My advice would be to look after yourself. Eat & sleep - as hard as it is - when your little one starts to get better and comes of the ventilator he will need you strong to look after after him.
Are you breast feeding - if you are keep pumping - I had to pump every hour to keep my supply which was then fed to ds via his feeding tube. If you are breast feeding keep your fluid intake up - Hospitals can be warm and it's easy to not drink enough. The hospital should be able to lend you a breast pump & help / advise you on how use it.
Keep positive - you will get through this.
Thinking of you. Xx

LoveSewingBee Mon 09-Dec-13 21:10:49

Freckles - so sorry that you and your DS have to go through this. If it is any consolation at all, at least he is in the best place and gets the care he needs. That does not make it less stressful for you and your DH though.

I would quickly pack an overnight bag, including towel, change of clothes, some stuff to eat, something to read/do, phone plus charger, some cash, your DS blanket/cuddly toy, maybe a book to read to him, he may not understand it and may not even be aware of it, but on the off chance that it will comfort him and soothe him.

It is horrible to see your child like that. I hope they will find you a bed somewhere (I would expect so TBH), but you may find that even if there is a bed you prefer to stay near him as much as possible. It will be utterly exhausting, so sorry you have to go through this.

MrsWedgeAntilles Mon 09-Dec-13 21:21:33

When we lived in London DS was up at Kings a couple of times with breathing problems, although never quite as bad as to need HDU so I'm not sure about their visiting arrangements. I can only suggest some practical things that we learned from our stays that I hope help you.

I second bringing loads of food and drink and also a warm blanket for yourself. Think about comfortable clothes as well. If you're sitting in a chair all night you don't want to be wearing jeans, tops that ride up and leave a gap or bras that stick into you. Bring thick socks so that your feet stay warm and you can curl up if you can. I usually wore trackie bottoms and layers.

The public transport to Kings is great but it can be a bit of a hairy areas at night. We used Keen cars who are based in Streatham and they were really good.

This is the Kings transport page:

http://www.kch.nhs.uk/patientsvisitors/getting-to-kings/public-transport

I wish you all the luck in the world, its a horrible time but they do get better quickly. On our most serious visit I left DS with his dad at lunch time so I could go home for a quick sleep and sort some stuff out. At that time he was still on oxygen and nebs and was really listless. I came back 3 hours later to a little blond cannon ball zooming up the ward, shouting while evading all attempts to catch him. I hope you get the same kind of thing soon x

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