Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

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.

Frecklesandspecs Mon 09-Dec-13 20:00:57

Guess I just wanted to know what to do and from parents who have been there.
Sick with worry. I hate the thought of leaving him.

Didnt want to read and run but no advice. Just lots of love and thoughts coming your way x

Iwaswatchingthat Mon 09-Dec-13 20:03:18

Sorry not had experience of this other than one night stay with older child. But I did not want to read bad run.
Hope your little one brighter soon.

Iwaswatchingthat Mon 09-Dec-13 20:03:46

Read and run - sorry

Rollermum Mon 09-Dec-13 20:04:08

I don't have any experience of this do no advice, but didn't want to read and run. I expect someone with more she advice will be along soon.

Sorry to hear about your DS, how scary. He is in the right place. I hope there is an improvement soon.

Frecklesandspecs Mon 09-Dec-13 20:04:16

Ty both. X

VioletGoesVintage Mon 09-Dec-13 20:04:45

Oh no. Poor you sad

Can't you stay at his bedside? Is he on the children's ward? In my (limited) experience, almost all the children have a parent staying with them, even if only on a chair.

Hope he's better very soon.

MrsClauswearsspanx Mon 09-Dec-13 20:05:03

Surely you can stay somehow? I would insist. So sorry OP. Thoughts coming your way here, too. Xx

AnotherWorld Mon 09-Dec-13 20:05:22

If it were me wild horses couldn't keep me away. Do you have someone who can be with your other children?

Very sorry for you. When my 3 week old was in hospital, they found me a camp bed. It's really unfair to keep you away from a new small baby like that sad maybe go down there and insist they find you somewhere to stay? X x

Frecklesandspecs Mon 09-Dec-13 20:07:22

Dh said they only let him in for 10 mins after waiting to see him. Maybe I should call the ward and ask myself?

Sirzy Mon 09-Dec-13 20:08:20

He is in the best place. I am amazed they don't have any parent accommodation, but if that is the case then you are probably best staying at home with the other children for tonight.

DS had bronchiolitis when he was 8 weeks old and spent 5 days on CPAP and was in hospital for a total of 12 days. It is horrible at the time but he is in the right place and I am sure the staff will look after him.

Talk to the staff, ask them any questions you may have - they are there to help and part of that is looking after the parents.

As hard as it is make sure you and your husband look after yourselves - eating, drinking, sleeping as much as possible.

Hope he improves quickly

Frecklesandspecs Mon 09-Dec-13 20:08:40

Another , dh would have stayed home with the otber two while I go.

Sirzy Mon 09-Dec-13 20:09:47

When DS was on CPAP there was no space in the room for anyone to stay with him, on the main ward we could but not in HDU - he needed round the clock nursing there so it just wasnt possible. The staff did find me a bed elsewhere though (not that I slept)

Mama1980 Mon 09-Dec-13 20:11:52

My ds1 had numerous heart operations and was in intensive care for most of his first year. I would insist no way on earth would I leave him alone. They never refused to let me stay even if it was only in a chair at his side.
Try to remember he's in the best place, hard I know but keep focused on that.
X

I would want to be there and would be v pushy about it. Phone first though to make sure you can see him. Hope he improves during the night thanks

Frecklesandspecs Mon 09-Dec-13 20:12:21

Sirzy I know you are right. I Will not sleep, haven't eaten all day. I'm exhausted already and the night has just begun! They say all the parent accomodation is taken by people from further away.

wrenster Mon 09-Dec-13 20:13:01

Hi there. Firstly, big big hugs, I can understand you must be beside yourself.

I had premature triplets who at 3 weeks old (still Pre term) all caught broncilitis. It was truly awful and the first time I actually feared for their lives. One wasn't quite as poorly so he stayed at home, the other two were back in hospital.

I stayed at the hospital with the two most poorly as I was expressing and felt they should have the milk at that time. The hospital gave us a room to sleep in with them. My DH stayed at home with one of DSs and looked after him.

Then MIL and DM came to help, brought food into hospital, fed DH etc and we all basically took shifts. It was an horrendous time especially when they said my poor DD needed to be transferred to GOSH. Thankfully she rallied slightly and they felt they could stabilise her at our local hospital.

In terms of advice, is there anyone else you can ask to help you? I know it made me feel a lot calmer being at the hospital, talking to the docs and feeling involved although obv nothing I could actually do. I would have gone insane at home. I presume your other 2 aren't as poorly? I would go to the hospital myself. Take changes of clothes, food and anything else you might need for a few days.

Mine were all in a week or so, but are now 5 and suffed no ill effects. I know how worried you must be so I hope this helps

RedPencilPot Mon 09-Dec-13 20:14:27

I would go and stay with him, I'm sure you don't really care about a bed.

Poor, poor you- that's awful.

I really hope he gets better soon.

Golddigger Mon 09-Dec-13 20:14:32

Go, definitely go.

Sirzy Mon 09-Dec-13 20:14:50

How far away from the hospital are you? Perhaps worth looking to book into a cheap hotel if you can afford it for a few nights so one of you can be near?

But before doing anything else get something to eat, even if its just a slice of toast. Honestly I know its hard and its the last thing you want to do but you need to keep your strength up. I was practically kicked off the ward by one nurse who reminded me that when he was in hospital they were doing the looking after side of things (which in itself is odd and horrible) but when he was well enough to come home he would need me to be well and strong enough to look after him - and she was right.

Rooners Mon 09-Dec-13 20:17:48

I'm so sorry to hear of this.

I think it would be best if DH comes home to care for the others while you go to your little boy.

Not that DHs aren't any use but just that he has known your smell and voice from inside you and so you will still be his 'primary' person, and I would imagine that every tiny thing in that respect will help him as he is so so little.

Same the other way round - you are almost still the same person as your baby, he's in his fourth trimester smile

Thinking of you very much tonight.

Golddigger Mon 09-Dec-13 20:17:50

Dont stay at home. Be there. Even if you only get a chair.
I had 2 children in special care. Sound like you very much need to be there. For yourself. I know how you feel.

Frecklesandspecs Mon 09-Dec-13 20:18:47

Dh said he has dedicated nurse with him all the time. He just called and said there is a chair there and I could but he needs to get home first then take me there somehow and its quite a long way.
I May just get taxi there a bit later.

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

pudseypie Mon 09-Dec-13 21:42:44

My ds was in hdu for first 2 weeks of his life. Is it a Ronald McDonald house they've checked as they are usually near the hospital for parents to stay in?
It is really scary seeing them ill but they bounce back so quickly. My ds has since been in hospital a few more times, once seriously ill, but the doctors are always fantastic and if he has a dedicated nurse, which my ds also had, he'll be getting the best care possible.
Sending you lots of support

Frecklesandspecs Mon 09-Dec-13 23:39:45

Update....thanks for all your messages of support. I arrived here about an hour and half ago and have been given a lovely room!
I haven't been able to see him yet though.
Yes he is in children's critical care so they Will tell me when I can go in and see him.

I hope you can see him soon. All the best!

LoveSewingBee Mon 09-Dec-13 23:44:54

Glad you have managed and have been given a room. Hopefully you can go and see him soon.

happytalk13 Mon 09-Dec-13 23:48:50

I don't have any experience but just wanted to give you a hand to hold.

WhereIsMyHat Mon 09-Dec-13 23:55:52

Aww, not, I hope he starts to improve son. When my son had some breathing loss at 5 weeks if was able to stay on a put up bed. It's so sad they don't have such provisions at kings for such a tiny and unwell baby.

Thinking of you.

WhereIsMyHat Mon 09-Dec-13 23:58:49

Oh and if you are BFing request a pump, the hospital ones are good. They should store your BM for you and feed you too.

CocktailQueen Tue 10-Dec-13 00:09:19

Thinking of you and your wee one. Lots of hugs to you all.

clucky80 Tue 10-Dec-13 02:48:53

Hi Freckles, so glad you have somewhere to stay smile hope you have seen your DS by now and he is doing ok. Try and get some rest too, you will need your energy for when he is recovering and comes home xx

saffronwblue Tue 10-Dec-13 03:03:19

So glad you are there with him. You are both in my thoughts.

ajandjjmum Tue 10-Dec-13 04:16:58

Hope you're all doing ok.

Very scary. Glad you managed to get there. You will feel much better being closer to him.

CatchesTheNightTrain Tue 10-Dec-13 04:32:09

My daughter was hos

CatchesTheNightTrain Tue 10-Dec-13 04:36:56

Sorry don't know what happened there.

I'll start again!

My daughter was hospitalised with bronchulitus at 5 weeks old at Stevenage hospital. This was 8 years ago.
Our situation sounds very similar to yours, older poorly children at home etc etc.

As a breastfeeding mum they had to provide accommodate for me, which was a fold out bed in her room. She was in intensive care for 2 weeks very poorly .

She is now a big strong robust 8 year old and fully recovered - just to reassure you, then can and do make a full recovery, as terrifying as it is at the time.

They have to provide bed space to you if you breastfeed, but even if you don't it only seems the decent thing to do.

I was expected to provide all her care (nappy changes/ washing) and cuddles. A four week old is quite needy and nurses simply don't have the time or facilities to provide more than nursing care.

Sending well wishes and hope your little one gets better very soon.

CatchesTheNightTrain Tue 10-Dec-13 04:41:06

Interestly looking at the date, my daughter got out of hospital with her bronchulitus on the 11th December 2005, certainly the time of year it strikes!

Have just caught up on posts and so pleased to see you've been given a bed.

technosausage Tue 10-Dec-13 07:58:21

Couldn't read and run, hope everything is ok x

FuckyNell Tue 10-Dec-13 08:15:02

How's it going op?

Frecklesandspecs Tue 10-Dec-13 08:18:13

Morning! Well tbh its really not possible to stay in there. It seems to be just quick visits in and out. I can't pick him up or anything. In fact I can't do anytjing but look at him really. I guess the babies in there are that ill. He is totally out of it. Still on ventilator and tubes and lots of sedatives.
Its quite scary but I know he is getting round the clock constant care from the best people.
I feel helpless. No wonder my dh wanted me to stay home but I'm glad I am at least in the same building.

My accommodation is seperate and tbh they don't even have chairs in where the babies are.
Ty everyone for the replies - been reading them in the night!

Frecklesandspecs Tue 10-Dec-13 08:22:48

My accommodation is like a hotel room. I feel bad for complaining now when dh told me they had none. The hospital is lovely. The staff have been fantastic from when I got to my local A and E to here.

Katiebeau Tue 10-Dec-13 08:27:31

I didn't want to just read and lurk.

I really hope your baby rallies soon. It's awful I know but this care does help them whilst their body fights that terrible virus.

Take care of yourself too.

onlysettleforbutterflies Tue 10-Dec-13 08:28:59

I hope your little boy gets better soon. Thinking of you all.

5HundredUsernamesLater Tue 10-Dec-13 09:26:13

Firstly, Good Luck. I hope everything goes ok.
And secondly I know from experience that whatever age the child and however poorly they are most hospitals promote family centered care and like you to be there and actively take part in caring for your child. Even when my daughter has been on a ventilator I was always encouraged to help the nurses where possible with washing etc and have always been provided with a bed or reclining chair at her bedside.
Parents accomadation is in demand especially at the larger specialist hospitals where more people are away from home and not many hospitals can meet the demand. They usually operate some kind of waiting list system so once you are there you can put your name down for a room. While your child is so ill you may want to stay at the bedside but its still worth putting your name on the list because as things improve you may want to go and get a good nights sleep and know you are close by if your child needs you. All the rooms I have stayed in have a bedside phone linked directly to the hospital so you can be contacted straight away.

5HundredUsernamesLater Tue 10-Dec-13 09:28:36

Have just read that you now have a room at the hospital. That's great, I hope everything goes well for you and your family.

pudseypie Tue 10-Dec-13 09:36:56

Glad you got a room. I know it's hard not being able to pick him up, I couldn't very often when my ds was in hdu, but at least you are nearby which will reassure both of you. Will they let you put an item of your clothing in with him so he can smell you? They should have breast pumps available do you can express and they will refrigerate or freeze it.
Thinking of you both and wishing the little man a speedy recovery x

MrsWedgeAntilles Tue 10-Dec-13 09:45:13

Morning Freckles, hope you're holding together and your wee one is looking better. Every time DS has been admitted every minute has been a minute I wished it was all over and he was back at home driving me potty.I've never known time to go so slowly but it did pass and he is currently driving me potty smile

As a nurse I can be very critical of hospitals but I though Kings was amazing. The staff were very kind and extremely good at what they did for us, all the way from A&E to the support we had afterwards. I couldn't think of a better place for him to be.

clucky80 Tue 10-Dec-13 10:37:09

Hi Freckles, GOSH intensive care is the same, well there are 2 chairs for you to sit in but you are not allowed to fall asleep in the chairs at night. The nurses there really encourage you to rest and we were more often than not the only parents there through the night and that was more on the few nights when DS was particularly poorly. DS was the youngest there at 2 weeks old (we were in the pedeatric ICU) and it is very scary as they don't really look like they are themselves on a ventilator. They are suprisingly strong though and even though DS was on ventilator and sedated, he would get very cranky when he had things done! DS had a lumbar puncture on day 3 in GOSH as he wasn't responding as quickly as he should have been but thankfully it was ok and he came on in leaps and bounds. I don't know Kings but the specialist hospitals are amazing. We actually live in London (Northern end of Picadilly line) but when we were being transferred from our local hospital we were told it would be to GOSH or Addenbrooks in Cambridge or St Mary's in Paddington. We found that we would go up to DS in his bed, stroke his hair and hands and talk to him and then just sit down again, before going up again.... We weren't allowed to do any of his 'cares' at first but as he started to get better we were encouraged to give him a little wash, change his nappy etc. at times I just wanted to pick him up (we weren't allowed to hold him either) and run away with him so you have my every sympathy I really do know what you are going through. Please remember to take care of yourself too xxx

Mishmashofstyles Tue 10-Dec-13 10:49:22

I hope he rallies soon OP, you must all be so worried.

moonblues Tue 10-Dec-13 11:03:34

Morning freckles. Hope your baby is doing better this morning and gets off the ventilator as quickly as possible. So glad you have a room and that he is in the best place. I'm sure you'll be able to do more hands on care as he gets better. flowers

AnotherWorld Tue 10-Dec-13 11:27:20

Big hugs Freckles.

wrenster Tue 10-Dec-13 12:42:19

Hoping things are looking a little brighter this morning

BobPatSamandIgglePiggle Tue 10-Dec-13 14:38:48

Hi - just wanted to add my well wishes again. I've been thinking about you all overnight. I think when you've had a poorly baby it brings it all back. I too was surprised at how quickly DS rallied in the end though after a terrifying week.

Not being able to pick them up is awful - I remember counting down the minutes to doing DS' 'cares' every 3 hours as we we ren't 'allowed' to hold him except for 5 minutes after nappy change / feed.

It will pass though - hopefully soon and you can all get back to normal x

clucky80 Tue 10-Dec-13 16:04:49

Sorry to hijack your thread Freckles, and I hope DS is getting stronger today smile For those people whose babies/kids had bronchiolitis - if they caught a cold again would it result in them becoming very poorly or wld it just be a normal cold? My DS was in intensive care at GOSH and was only discharged less than 2 weeks ago. We haven't had him outside the house for fear of catching something but my older DS has a little cold and even though I have tried so hard to keep them apart, 5 week old DS now has a little cough again and sounds snuffly. I'm gutted and scared it will escalate. Does anyone have experience of this? - sorry again Freckles for hijacking thinking of you and your DS today x

Sirzy Tue 10-Dec-13 16:16:58

Clucky - for DS he got broncholitis 3 times more before he turned 1 and was admitted to hospital on two of those occasions (although only needed oxygen and nebs rather than the HDU stays previously) - however, he has since developed severe asthma so his consultants think his lungs have always been weaker hence him struggling so much, the consensus is that he has been rather unlucky in that sense.

Plenty of children have it once and then never again.

I think the best thing is to just try to carry on as normal and not let it stop you too much - easier said than done of course!

Mama1980 Tue 10-Dec-13 17:52:17

Hi freckles just checking in, how is he today? Thinking of you x

clucky80 Wed 11-Dec-13 08:09:52

Hi Freckles, hope DS had a good night.

Thanks so much for your advice Sirzy. Wow that must have been such a tough year for you. How is your DS now? Is his asthma stable? Sorry I don't know much about severe asthma but I imagine it is very scary. Yep I think I just need to relax a bit and realise I can't wrap DS in cotton wool and protect him from everything, especially with an older DS at nursery! He seems ok today although has a cough and blocked up. This is how it started last time but I will have a lower tolerance this time in insisting he is properly checked.

Elibean Wed 11-Dec-13 09:11:29

Just seen this - I'm so sorry, Freckles, it's an awful time to go through and it took me a while to recover from when dd2 went through exactly the same thing.

We had a week in HDU when she was 4 weeks old (bronchiolitis complicated by a floppy larynx) with CPAP, tube feeding, ABs, etc. dd1 was sick at home, and dh caught it too - I managed to fend it off till dd2 turned the corner.

I imagine you are at that stage where it's like watching paint dry, only much harder! I seem to remember it took five days for the virus to run it's course, and then she got better fast. So I'm hoping a day or two and things will start to get a lot better - meantime, am thinking of you and sending lots of luck and hand holding x

Elibean Wed 11-Dec-13 09:14:12

Clucky - dd2 had a nasty cold a few weeks after her HDU experience, and the GP sent us back to the hospital to be on the safe side (they tended to panic because her floppy larynx made her sound as though she was struggling to breathe when in fact she wasn't). She was fine and was discharged the next morning as it wasn't RSV.

She never had bronch again. She never had a lingering cough. She did have a dreadful time with her enormous tonsils and adenoids almost choking her, so had surgery aged 26 months - but the infection had no lasting impact, and never came back.

Just so's you know that can happen wink

What I would say, is if in doubt just go get checked - peace of mind is valuable! Hope he's better v soon x

spiderlight Wed 11-Dec-13 09:22:34

Hi - just adding another hand to hold and good wishes for your little one. How is he today?

MairyHoles Wed 11-Dec-13 09:56:34

Hi, I'm just reading this with tears in my eyes, my nephew was airlifted to hospital ans put on a ventilator at 9 weeks old on Christmas eve 6 years ago for bronchiolotis. We had a 4 hour car journey at midnight to the hospital as my sister can't drive and were allowed to stay 2 minutes. My sister and her husband stayed at the hospital while I looked after her older child, luckily we all lived together at the time and her daughter was only 11 months so never really understood it was Christmas! They could only go in andsee him during the day and had to stay in hospital accomodation. I brought her daughter down every couple of days and eventually they allowed her daughter to stay with them the last 2 nights they were there. I remember how awful it looked seeing him hooked up to all the machines, there were 8 kids with the same thing in there, from all over Scotland and it was terrifying. Once they start getting better they really get better quickly, my nephew is quite prone to chest infections but so are his siblings so I don't know whether that is a long term symptom or not, but otherwise he is a healthy happy 6 year old who now wears size 8-9 clothing. I hope your wee one gets better soon, thinking of you.

Rockinhippy Wed 11-Dec-13 10:46:52

Thinking of you & your little man Freckles hoping that you are coping well & that he's on the mend

Xxx

Frecklesandspecs Thu 12-Dec-13 02:15:22

Checking back in day 3 just to thankyou all for sharing and the lovely messages of support. I wish I could address each one of you but I'm completely zonked out!!
I've since learnt that in hdu you can stay with bubs but not in Icu.
I'm still in the lively room they gave me and bubs is still in Icu. Not much change but hanging in there.
He is still under constant sedation and it is really harf seing him like this so in fact I'm now glad I have my own room. Horrid as that sounds.
There has been a complication with a line they put in his hand. Hes got a clot and one of his fingers has turned purple so he is also now on anticoags!
I really hope he doesn't have to lose anything. I keep thinking they may need to amputate if it doesn't get better soon for risk of gangrene.

Its a horrid, testing time for anyone but I'm trying to just tell myself he is in good hands.
Xxp

saffronwblue Thu 12-Dec-13 04:23:09

Thinking of you both. Poor little boy but he is in the best hands. Remember that you need to eat and drink, sleep if you can and go for little walks outside to get some fresh air.

Mama1980 Thu 12-Dec-13 04:34:26

Thinking of you x

Katiebeau Thu 12-Dec-13 08:01:17

Thinking of you both. Come on little man. You can see this off in time for Christmas x

pudseypie Thu 12-Dec-13 08:12:35

Oh freckles it sounds like you are being so so strong. Remember to look after yourself too eat and try and get some sleep if you can. Sending positive thoughts and big unmumsnetty hugs to you and little man x

Womnaleplus Thu 12-Dec-13 08:39:58

Sending best wishes here too x

Mintyy Thu 12-Dec-13 10:49:59

Freckles - I live near Kings. Please let me know if I can do anything to help you.

Elibean Thu 12-Dec-13 12:19:45

Thinking of you, Freckles. Hopefully this is the 'dark before the dawn' part - I remember it well.

The clot and purple finger sounds like an extra worry you could do without, but as you say he's in the best hands and hopefully the anticoags will do the trick....hang in there sweetheart, and get as much rest as you can. You'll need your energy when you're home with a recovering ds xxx

Elibean Thu 12-Dec-13 12:20:49

ps I wasn't allowed to stay with dd in HDU and had a room in the hospital's 'hotel' on another floor...I felt the same, it was a relief to get away and feel separate for a few hours each day, it's a very very intense time. Doesn't sound awful, sounds normal xx

spiderlight Thu 12-Dec-13 12:44:43

Oh, poor lamb. I hope his finger improves on the anticoagulants. Sending you all the good thoughts and strength I can muster.

OfficeSupplies Thu 12-Dec-13 14:34:32

Sending you some good thoughts too, he is in the best place and anticoagulants are effective. One of mine had some and they resolved the issue quite quickly hoping they do for you too.

WireCatGlitteryBaubles Thu 12-Dec-13 14:39:41

Oh dear sad

I hope he's better soon x

flowers

minmooch Fri 13-Dec-13 08:30:34

Hope your little one is doing better today Freckles. My DS was in ICU after brain surgery and it was a very frightening, yet calm, place. Take care if yourself.

Raeray Fri 13-Dec-13 08:48:40

Oh freckles I'm sorry to hear your little one is so poorly. I had replied on your previous thread checking how things were and someone pointed me in this direction.
Sending strength to you and get well vibes to your lovely little one. Hope things are looking brighter very soon. Kings are fab they will be taking great care.

Elibean Fri 13-Dec-13 12:16:52

How is he, Freckles? And how are you? Sending good thoughts x

Hangingoninthere Sat 14-Dec-13 09:05:18

Really hoping your little one is ok and you are ok. When my ds was in I was told that although all babies are different it is often after day 5 that they start to improve with Bronchiolitis. Sending you lots of positive wishes x

pudseypie Sat 14-Dec-13 11:06:27

Just checking in to see how you are op. thinking of you x

Mummyforman Sat 14-Dec-13 18:50:44

My son had this at 2 weeks old, already premature it was very serious for my boy. Oscar was oxygen dependant & had to be starved to give his lungs space to open due to congestion. Your baby is under the care of some amazing women!!! Personally I couldn't be kept away, but the severity of oscars was really bad & he was on CPAP as the nasal tubes were just not powerful enough. Babies with this condition either feed but need oxygen or won't feed but don't need oxygen, if this is the case your baby will be kept in. My boy was there for 2 weeks. It's not nice or easy but once they're in nicu there isn't much you can do apart from give mummy cuddles. Depending why your current 2 are poorly I'd personally be careful who is around baby.

I know just how hard this is, feel free to inbox me to talk xx thinking of you xx

beautifulgirls Sat 14-Dec-13 20:14:30

Freckles has a very poor internet connection at the hospital so we may not be getting updates for now - I don't know any more other than they are still there.

Elibean Mon 16-Dec-13 11:56:13

Thanks for letting us know x

And if you have any contact with her, please tell her she and ds are still in our thoughts

Elibean Wed 18-Dec-13 10:45:53

Still thinking of you and ds, Freckles. Hope you're just busy with a recovering baby and other LO now smile

Raeray Wed 18-Dec-13 19:13:31

Me too elibean! smile
OP I hope things are a little brighter and your little one is doing ok - we are still thinking of you.

Penano Thu 19-Dec-13 01:04:25

Stumbled across this thread looking for MN support. My darling DD, 5 weeks old yesterday, is now in PICU with this horrendous virus having declined over the last few days. I feel like my heart has been ripped out. So... I'm thinking of you OP, and all mummies/daddies in the same situation & hoping our babies get better soon.

HelloBear Thu 19-Dec-13 01:13:08

peneu wishing your DD a speedy recovery, how frightening it must be.

Penano Thu 19-Dec-13 06:26:35

Thank you Bear. It is utterly terrifying.

Quangle Fri 20-Dec-13 13:52:32

OP and Penano - thinking of you and hoping things get stabilised soon. It's so easy to get carried away with stress at Christmas and actually, I have no reason to be stressed. So thinking of you.

Sirzy Fri 20-Dec-13 14:17:06

Penano, hope your DD is better soon too. When DS had it we were told days 3-5 are normally the worst and then the recovery generally starts.

Hope both babies are home and well for christmas x

Elibean Fri 20-Dec-13 17:18:36

Penano, am thinking of you too. My dd was 4 weeks when we were in the same situation, at exactly the same time of year (in fact she went in on dd1's 3rd birthday, three days before Xmas).

The turning point is usually at 5 days, give or take, but waiting for that is awful - and yes, it does feel like your heart is ripped out when your baby is taken from your arms and there is nothing you can do but be there, and maybe express milk.

Big hugs to you and Freckles and all in the RSV boat this Xmas, and may your LOs be safe and well again very, very soon x

Penano Fri 20-Dec-13 23:06:56

Thanks Elibean. Really don't want to hijack Freckles' thread - I hope her DS is stable or better still, improving.
We're day 5 now, 3 in PICU, & hoping for some positive news soon. Just for interest, how quickly did your DD take to improve?

Hopingforno2 Sat 21-Dec-13 08:13:28

Hi op my dd is 8 months and in childrens ward with bronchiolitis too so 'touches wood' not in icu like your poor little one i have an older ds too who would have thought a cold virus would cause this much bother! just another voice saying I understand how hard this is flowers
I hope your dd is better now

Raeray Mon 23-Dec-13 15:41:33

Just checking in to see how all your little ones are doing? smile

tholeon Mon 23-Dec-13 19:31:29

Hi lovelies I am so sorry you are all going through this, it feels so desperate. My son was in picu for eight days on a ventilator with this almost exactly four years ago, he is a hale and hearty four year old now and we have - almost - forgotten the ordeal. Love and hope for very swift recoveries xx

Elibean Mon 23-Dec-13 20:29:02

Hi Penano, and sorry to have taken this long to reply - it was dd1's birthday weekend (seven years since dd2's bronch episode!).

In answer to your question, once she started to turn the corner at 5-6 days she got better very fast. A few days, tops. She was a lucky one who had no lingering cough or problems from the RSV - though her floppy larynx and vast tonsils caused problems a year or two later, which needed surgery. Another story, and all sorted now smile

How is your LO now?

Freckles and Hoping, sending best wishes to your LOs too - I think it's lovely that Freckles' thread has turned into support for all parents of tinies with RSV flowers

Penano Tue 24-Dec-13 09:07:51

DD spent 3 nights in PICU and has been in hospital for a total of 10 days now but she is improving. It looks like she's following the 'Bronchi baby' course all the medics & nurses have talked about, however that feels impossible to believe when your baby is struggling in intensive care.
I really hope all the other posters on here with poorly babies start seeing improvement soon. And thanks to everyone who has replied to me - I'm a MN lurker & shy poster but I've really appreciated your support. thanks

Sirzy Tue 24-Dec-13 09:18:23

Peano glad she is on the mend. It is horrible when they are so ill but they do bounce back. My bronchi baby is now 4 and bouncing around singing Christmas songs.

Elibean Tue 24-Dec-13 15:29:16

Penano very glad she's on the mend, and thank you for letting us know smile

My 4 week old bronch baby is now 7 and pestering the life out of me whilst waiting (yes, already) for Santa...

Raeray Wed 08-Jan-14 23:15:07

Hope all your babies are back home and snuggled up feeling well now smile

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