RSV Support Group - or in fact if you have had a baby in a life threatening situation and would like to talk/contribute

[dejags]

As you are probably aware, my Carys has RSV and has been in hospital (ICU/High Care) for a week now.

She is over the worst but the recovery seems to be so very slow.

I know Elibean and Divastrop have had babies of similar age (Carys was 5 weeks yesterday) with RSV.

Would love to hear from you about how your baby progressed - both in hospital and once home.

We have been told that this virus will have given her immune system a damn good kicking and that we should expect the next six months to be hard (it's winter here too which never helps). What was your experience?

How did you manage dividing your time between the sick baby and his/her older siblings? My older boys are getting a little tired of only having mummy or daddy at home and DH has to go back to work next week. Not sure how we will manage then?

Ho hum - the events of the last week are taking their toll on my emotionally and it's getting hard to keep upbeat when her recovering is so painfully slow.

Hello

glad to hear your little one is doing better - long may it continue.
My story is a little different. Jemima was born March 2006, 3 months prem. We spent nearly 11 weeks in neonatal. the first couple of weeks we got by on adrenalin. After that it was as you say so painfully slow - tiny tiny steps to get to where we needed to be. i do remember our consultant saying that we could now take things day by day rather than hour by hour - a huge step! We had ups and downs (a bad infection at 5 weeks just when we thought we were out of the woods) but we got 'there' in the end. Actually i am getting all emotional just recalling it all now. 2 older children at home, dh had to work - we got through it day by day, it was honestly the only way. Get to the end of today and be thankful that another day had passed and we were one step closer to getting home and being normal. And one day we did!
BTW not sure how you are feeding Carys - but whilst J was in hospital i was expressing 5 times daily - THE most stressful thing on top of having a sick baby - however was well worth it to be able to fully bf when she came home.
Best wishes - i will keep an eye on how things go.

Dejags - just off to work so this is a quick post but I'll be back later. My dd has had bronchiolitis twice. The first time led to the discovery of a pretty rare heart condition. She had open heart surgery on the top of the RSV and was in ICU for several weeks. We also have two other children. She was very sick for a long time and it was one of the hardest times of my life.

I've been thinking of you this past week and I'm so glad Carys is on the up. Will check in later.

My dd4 hasn't had RSV but did spend 10 months of last year in hospital (she also has a heart condition) from 2 weeks after her birth in March to 2 weeks before Christmas. Most of it wasn't in our local hospital either,but a 45 minute drive each way. I used to spend a few days with her and then a few days at home with the older children.(Dh ended up having a lot of time signed off work sick,but his employers are fantastic & our GP is very supportive too)
It is very difficult not to feel guilty at leaving the little one in hospital,but I knew she was well looked after and I figured at such a young age she wouldn't miss me as much as the others. Someone also pointed out to me that dd4 wouldn't remember me not being there,but the others would (the youngest are 3 and dd1 is nearly 12).
I expect you have heard this before, but it is important that you look after yourself too. It may help to focus on the things you can do for her.
Sorry for the essay but I hope it helps.

Hi Dejags, I just posted on your other thread, and have used up my morning online time (two mintutes typing frantically whilst expressing milk) but will post on this one later...I know its taken/taking me a long time to let go of the trauma of a very sick baby, think this thread v good idea

Hi Dejags
So glad to hear Carys is over the worst.

My ds2 had septicaemia (originally diagnosed as menigitis) at 8 weeks - so I know how bloody scared you must have been.

In answer to you OP, yes, the next six months WERE hard. Ds2 had got used to being woken at all hours of the night for injections etc, so it was AGES before he slept even halfway well.

Also, all the antibiotics he'd been pumped with played havoc with his digestion/bowels for a while.

But most significant of all, I think, was the effect it all had on us as parents: after the adrenaline rush that comes with the lilfe-threatening illness comes total and utter exhaustion. Do be kind to yourself and each other.

Also, if you're like me, there is a danger that you'll forever see your dd as the 'fragile' one: you really have to work hard not to wrap them up in cotton wool,

Hi dejags. Glad things are looking up.

I can't remember all the details but ds got his in winter too (in the UK). He started off with jaundice that would not clear and the minute that cleared up, he became very ill and was in and out of hospital until he was 4 months old.

We joked at the time that we never heard him cry till then (and boy, did he make up for lost time). He was so poorly poor chap that all he did was cough and splutter.

It was all such a blur - dh was away a bit and I had a 15 month old dd who got dragged everywhere! I do know that he coughed for AGES afterwards.

Also, for around a year after that, he got a few chest infections and had to be on steroid inhalers for a while. As his sister has asthma, I was convinced he was going the same way but when he got to around 18months, his health suddenly improved and he has not needed an inhaler since he was a small baby.

In fact, I took him to the doctor around a year ago for something and they commented that he had not visited the doctor since his newborn v poorly days.

So although the future can look bleak right now, there is often a positive outcome. Fingers crossed that Carys keeps improving.

Hi again,

Elibean - how has your DD been since coming home from the hospital?

Fox - did you have any further admissions or were the chest infections treated at home?

The paediatrician this morning said we could expect something along the lines of 3 weeks in hospital. Perhaps less, perhaps more. It's impossible to know really.

There have been a few other kids in with RSV Bronchiolitis since we've been in, and I keep asking myself "why did it hit my daughter so hard?"

The others are sick but are managing in the normal isolation ward on oxygen.

I can't believe how those of you who had babies in hospital for months managed. I suppose you just have to get on.

As somebody mentioned. The days when everything hung in the balance were just dealt with with grim determination and the need to keep positive that she would get better. Now that she's out of the woods and we can take a deep breath, I realise that I am quite traumatised by it (I feel like a drama queen saying that when I hear about those of you who went through this long term and with much more serious illnesses).

One of the nurses on ICU asked if we would like to take photos of her as a reminder. I declined - I doubt the image of my tiny little baby will ever leave me.

She's been determined to give us a blast from the start .

Borderline Hypermemsis from 0-25weeks of pregnancy (I vomited at least 5-7 times a day for nearly 6 months).

Once I got over that I had a measly 5 weeks of feeling ok (still nauseous but no vomiting) before the vomiting started again at 32 weeks, only to go into prem labour at 36 weeks and deliver her a day later. She's been a showstopper from the start .

In the words of the famous Piglet (from pooh bear):

"I am only a small girl but I am very brave."

Today I have had a better day. Tried to just do normal things while not at the hospital - took the older boys shoe shopping, did homework, cooked the tea etc. I think they needed it.

Back on the ward now until the next shift change at 11pm.

Saggar - several weeks in ICU. I just do not know how you coped. I admire you, I truly do. How do you feel now?

BabyJ - unfortunately I have had a breast reduction so expressing just doesn't work. She won't feed from me because the nasal tubes get in the way, so I face the prospect of breastfeeding going tits up too (excuse the pun ). 11 weeks in - that must have been really hard and so far away too. That's one small mercy for us, the hospital is only five minutes from home.

It's weird, I have never really thought about having a very ill child, or one who could have long term health problems. Shows - a healthy child should never be taken for granted.

Just rambling here and collecting my thoughts.

Hello dejags - glad Carys is getting better, and I can't imagine how hard it is to have everything else to juggle - you sound like you are doing really well though...? I know from the experience we had with dd that it really traumatised me and I had to work hard to recognise the emotional impact it had on me (if that doesn't sound too stupid).

At two weeks old (and after an emergency c-section) she had a slight infection which lead to about 10 apnea attacks, one in the car on the way to hospital, when she just went grey and floppy, and then a number when we were in A&E, the last one of which they had difficulty in reviving her from. She was in PICU for two days and then on a high dependency childrens ward for three, and came home after a week. They never found what the problem was, despite several lumbar punctures (truly awful in a 2 week old) and fortunately she was never intubated, although like you we were minutes away from it.

I was completely blown away by the whole experience - one minute we were sitting at home on a sunday night, the next we were in A&E wondering if dd was going to pull through. And I also found the whole PICU environment very very stressful, not just dd's situation but also the state of the very sick children around her. Sorry, this is turning into a bit of a long one, and not much use to you!

All I can say is that talking about it, not just to your dh, but to as many people as possible, really really helps. It was only later on, when I was heavily pregnant with ds that I had counselling about it, because I was terrified it would happen again, and in retrospect I should have had counselling a lot earlier. So.. I would recommend that when this is all over and you are back home in some kind of routine, try and hunt down a good counsellor because it will be really valuable in the long run. I also think that in doing what you are already, in posting on here, will really help, just to know that other people have been there and come through what is an enormously emotional experience. I would add that dd is now a bouncing healthy three year old who suffers only from obsessively over protective parents! But we did get a lot of support from the Foundation for the Study of Infant Deaths who were brilliant in putting us in touch with a charity who gave us an apnea alarm for her, which was a life saver (not literally for her, more for our sanity, I don't think we would have slept otherwise, ever again!)

Anyway - sorry to be horribly long, but hope it helps in some way!

I am very glad to hear Carys is progressing Dejags, sorry it's so slow. It's a horrible frightening illness, you must feel drained.

I'm not going to splurge out all my experience with ds2 and RSV just now (am in the wrong mood and would put it all wrongly) but might contribute later. This thread is a good idea IMO, RSV is commoner than people think.

....and Carys is a beautiful name btw

Coping - hmm - not sure I did really. Dd was in hossie well over an hours drive away so I 'lived' there and dh was at home, looking after the boys, working when he could and travelling to see us. We were on auto-pilot for a long time.

It did hit me maybe a year later (it's 13 years ago now) - I had PTSD for a while. And I still have down times (posted on SN only this week). I think you have to acknowledge that it is a very stressful time and that it's OK to 'not cope'. How is your dh/dp? Men often handle this sort of thing very differently. And I agree that you need to look after yourself and be kind to each other. Doing things differently doesn't mean either of you cares less than the other. That was a hurdle dh and I had to get over.

Carys is very unlucky to get RSV so young dejags and I'm sure that's why she has taken it harder than others. I think they often have a problem getting back on track with the feeding and it's a shame that you the bf may be scuppered.

I've just checked her out on your profile. She's a sweetie.

So pleased she is over the worst xxxx

I've done long hospital stays a few times for various reasons.
Dd1 had a dislocated hip found at 13 months and spent 3 weeks in hosp in raction, hardly the same I know but it was really hrd to just see her lying there tied tto a pole above her

Dt1 had the same (dislocated hip) found at 6 months and spent 2 weeks in traction. Was awful to leave her twin sister at home.

Dt2 had bronchiolitis at 4 weeks and was on oxygen and in hospital for 2-3 weeks. I had her twin sister staying as well. She got pretty poorly very quickly and scared the crap out of us But once treatment kicked in she gradually got through it as did we. The few months after we worried at every sign of a cold or ollness but she never got poorly again and out of 5 children she is the healthiest!!

Dd4 was born 7 weeks early and got a strep infection which affected her breathing and she had lots of apnea and bracacardia attacks(sp!) This to be honest was the hardest as I had 3 other children at home, was expressing every 4 hours and trying to juggle everything, on top of that they moved her to another (but better) hospital so it was 20-30 mins away instead of 5
She came home after 3 weeks and was fragile for a few months. She has had quite a few chest infections soon and now at nearly 4 has been diagnosed with Athsma but it's controlled quite easily.

Sorry this is soooo long. It will get easier when she comes home, you will worry over everything for a few months but she sounds like a real little fighter.

{{{{Hugs}}}} to you xxxx

Dejags, Mischa has been pretty much ok since coming home...she coughed a little for a week or so, then to be honest she hasn't, since. She's had about four or five colds (whenever her big sister has had one, basically) and I've been all levels of anxious about it each time. She was readmitted the first time she caught a cold three weeks after going home...at 8 weeks old...because she seemed to be finding it harder to breathe and no one, GP or us, was about to take any risks given how fast she deteriorated with RSV. But it was 24 hours on monitors, then home - just a cold.

I guess next winter will tell us more, but so far - we've been lucky. No infections, no cough.

The reason Mischa went downhill so fast, apart from how young she was, was that she has a 'floppy larynx' - a fairly common condition that makes her breathing noisy, and that she will grow out of. It does mean her airway was partially obstructed - so the RSV on top of it was too much, and her heart started to fail, even on oxygen

She was admitted on dd1's birthday (3 days before Xmas), so I left her asleep on the ward and went home for an hour to cut the cake with dd1...came back to find six doctors around her bed looking stressed, and CPAP being set up in HDU for her. I'll never forget it - yes, I was traumatized, and it took days for the scared cold feeling in my stomach to go. The first night in HDU, three out of four babies in HDU went into respiratory or cardiac arrest...dd was the only one who didn't. Another night I came down at 3am with some expressed milk (I was sleeping in the Patients Hotel on the next floor) and the curtains were drawn around her bed - turned out she'd been moved to make room for another patient, she was fine, but I nearly had heart failure myself for a minute.

Like you, I'd no experience of a sick child - dd1 has barely had more than a cold in her little life - its a steep learning curve, and one which has left me humbler and very grateful. One of the LOs in HDU is still there, six months later...her poor Mum has two others at home, and no idea whats wrong with her dd. Not that I'm making light of what we went through, either - comparing traumas is pointless, they're all rough.

This thread is helping me realize how much better I feel now, but also how emotional I still feel about those first few months...and I have had a bit of counselling since then. Talking with others who've been through it is good too

Sorry this is so long...think I needed a hormonal ramble

Wishing Carys a peaceful night's sleep, and you too - I'm glad you were able to do some 'normal' stuff with your boys. xx

ps I also wondered why my child was so sick when there were literally dozens of RSV babies on the ward who didn't need HDU....one was only 11 days old, and premature, too. I'm glad they didn't, but was and that mine did - and scared (we need a scared icon on MN!!). In Mischa's case, it was her larynx probably - but who knows. Bad luck, too, I guess.

hi,ive only just seen this thread.glad carys is getting better now x

i havent read all the posts yet,will catch up in the morning.

my dd1 had bronchiolitis at 12 days.she was in hospital for 5 days on oxygen.she was fine after and has been fine since.

dd2 got bronchiolitis at 11 days.she was on just oxygen in my local hospital for 4 days but started getting distressed on the tuesday afternoon.the doctors(there must have been about 15 of them!)were with her for hours,and she had to be intubated,and was tranferred to leeds general by ambulance.my other dc had been looked after by my xp untill then,but then my mum cmae up to look after them.dd2 was in PICU oln a ventillator for 5 days,then was tranferred to the childrens ward,then back to my local hospital on oxygen for another week.

she was allowed home on new years eve 2005.

she did get alot of colds/chest infections in the first year.i used to sit there,counting her breathing and checking her breathing wasnt 'laboured' every time she had a sniffle.however,i have a ds at nursery and he used to bring home all sorts of bugs,so she may have got all those colds etc anyway.

she has been fine since she turned one,when she gets a cold now its just a normal cold,and she hasnt suffered any long-term problems as a result of the RSV.

Another good night here .

It started off poorly though. The on-call physio came in to see her at 8.30pm. I am no physio, but I have done enough listening to know that RSV patients of this age need "soft physio" at most two fingers or the mechanical vibrator thingy. This physio sat down and proceeded to do full hand physio i.e. she was patting Carys with a full hand. I asked her why she was using a much more aggressive technique than all of her other colleagues and reminded her that Carys is only 5 weeks old. She continued but much more gently.

Afterwards it transpires, that this physio hadn't even bothered to read DD's notes and didn't bother to write up her treatment afterwards. The paediatrician had to be called out to rule out any damage (collapsed lung was a possibility). SATS were in the mid 80's during the treatment and never really recovered above the low 90's, so the o2 had to be switched up again.

She seems fine today though, so no long term damage hopefully.

She was bathed for the first time today and her o2 taken off - she is coping ok in the low 90's, so we wait for another hour to see what happens.

If she stays stable, then we may be able to go home in 2/3 days time. I don't hold much store in this though because I know it changes from hour to hour. Will keep you posted.

Dejags, it is great to hear Cerys is doing well.

I have seen that you have been staying positive and upbeat, and even though it's taking its toll on you, you WILL all get through it no matter how hard it is, and exhausted you are.

I have just returned home with ds after a 8 week stay in hospital. He became very sick very quickly and very unexpectedly. When you think things can't get any worse, they do and you take a backwards step. But, that just means that there are more forward steps to take. And with your love Carys will get there - it just takes time.

DS will be immuno-supressed for the rest of his life, and although I am still a bit manic about him catching something, each day you calm down about it.

I don't know if you have many family and friends to rely on, but if you do use them as much as you can. If anyone offers any help, take it. Don't worry that you are putting them out, they wouldn't offer if they didn' want to.

Oh, and regarding the Sats - don't get too worried about them. You said she had been holding her own before the physio, so she will again. There are so many things they can do to help that are non-invasive.

DS sats were dreadful for about a week, then all of a sudden (and for no apparant reason) he held them up without any assistance. And this happened to many other kids in the hospital too.

And good for you to query the physio. Always, always query something you are not happy with.

Take care and many positive thoughts to you and yours xx

Pleased to hear of another good night. Grr about the heavy-handed physio though.

It's hard to not get caught up with the 'numbers' - look at Carys and you'll see the improvement

Dejags - I'm so glad baby Carys is over the worst.

I posted on your other thread about ds having RSV at 6 weeks. He & dd3 had both had what I assumed were bad colds & ds had been coughing a little from the Tuesday. I called gp straight away & got fobbed off. Same on Wednesday. On the Thursday I got an appointment late on but the bus didn't turn up & the surgery was closed. He went really downhill over the Thursday night so I had him at the surgery first thing Friday morning. The gp took one look at him & called for an ambulance.

He had oxygen in the ambulance but thankfully managed to keep his SATS up (they were over 90 throughout). He had to have his tubes cleared out before every bf but was bringing up all his feeds so had an NG tube. He was so exhausted he kept 'resting' for long pauses between breaths so had an apneoa monitor (the only reason I could allow myself to sleep). He got taken in 22nd Dec & because he didn't need oxygen & was finally managing to hold onto his feeds we were allowed home late on xmas eve (if it had been any other time of year he'd have been in a few days longer but the ward were trying to let as many lower-risk patients home for the day as possible). The hospital phoned on xmas day just to check on him & we were told that if we were at all worried we should just go straight back in.

Although we were warned that he might be prone to chest infections, wheezy etc he hasn't been too bad so far (although he does have a cold just now ). Asthma runs in my family though so I'm prepared for that eventuality. I don't think I've ever been so scared as when he was in hospital & kept thinking that I should have gotten him help sooner but the docs all said that babies can go downhill very fast (which is what he did) & if we'd been seen earlier the diagnosis might not have been so easy to make. He did make just as quick a recovery though. Even when he was at his worst the poor wee man was still trying to work up the energy for a smile for his mummy (I'm crying now while I type this).

I hope Carys continues to improve Dejags & that she's back home with you soon.

((((XXXX))))

Hi Coleyboy - did your DS have RSV, or was it something else?

Greebos, that's terrifying. Thank god our paediatrician took us seriously - so that when she "crashed" we were prepared. They had already put in the NG tube, drip and oxygen lines. They were preparing an arterial line prior to intubation to, but thank god never needed to site it.

I spoke too soon. She's back on the 02. We've had a very up and down morning. The damn nasal canula hurts her and she screams and gets really distressed when they put it in.

She's stabilised back on the 02 now, so instead of staring at the monitors, I thought I should post on here to take my mind off things.

2 steps forwards, 2 steps back.

HO HUM

Diva, does did your DD have her 02 gradually reduced or did they go cold turkey after the five days in your local hospital?

They keep trying to take DD off cold and it just results in a lot of stress for everybody, most especially her .

ds1 had it twice in a year and it was a pain. first time he was in for 5 days on oxygen and then let out home with daily visits from a community nurse. The second time I was more prepared and he went in sooner and came out after 48hours. After the first time he was sent home with some liquid asthma medicine to relax his airways and he took it for the next two winters in particular.

Now he is 6 and touch wood we have been clear of it for a couple o winters.

Good luck