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.

Hi all,

Sorry I haven't updated sooner - no internet connection due to bad weather.

After all the stress of being sent for the Echo - Carys' heart, I am delighted to tell you is absolutely perfect.

We were due to be discharged this morning.

Then ... drumroll...

She got a fever

She is Rotavirus positive [extremely sad].

So very frustrating and we'll definitely be here a few more days. She spends more time with her paediatrician than his wife does. It was his birthday yesterday and he was out to her at 10pm. We are so lucky to have such a fabulous doctor.

Megg - that is so sweet, feel free to CAT me or email me thedejagers at yahoo dot co dot uk.

So here's hoping for a discharge by the weekend.

Love
dejags
xx

Oh bugger, dejags.

dd got rotavirus twice whilst in hospital - hope you can escape very soon. Much less likely to catch any more dodgy bugs at home.

about her perfect little heart though.

Fantastic news about the heart scan result but you must be so and frustrated at having to stay in longer.

Dejags - have been thinking about you and Carys. Glad that her little heart is doing just fine but sympahies about having to stay in longer.

Nothing to report as don't (thank god) have experience of RSV but wanted you to know that I have been thinking of you.

xxx

We are going home

Elibean - thank you so much for sharing your experiences with Mischa. The pattern was so very similar. To know somebody else went through it and came through fine has been a godsend. I have tried a number of times to type this message but each time I do the mobile connection drops out. Will CAT you when I get home.

I'll type my next update from home.

Hope everybody is well today.

Love
a very happy Dejags
xxx

What a rollercoaster.

We were readmitted last night - they were worried about dehydration due to the rotavirus.

So another night of no sleep for me (day 18 and counting). We are back home now, so let's pray that things settle down now.

Dejags
x

dejags - only caught up with this - sorry to read how tough a time you are having of it.

Dd1 was born with a congenital heart defect and so spent the first three weeks of her life in hospital. We then had her home for a few weeks and it was up to London hospital for her to have open heart surgery at 8 weeks old.

We were lucky in that dd1 was our only at that stage and dh had fabulous employers. But i can remember spending many an hour by her bedside. The three weeks spent in ICU/SCBU at first were wearing as I was also recovering from a c-section. I got expert at reading machines - like o2 sats etc.

I had to take her to London for her surgery on my birthday. I was thinking what a crap birthday present that was BUT i tried to remain positive in that she was getting the care she needed and hopefully if the surgery was successful she would be fine.

DD1 had her surgery and was in PICU - a comfortable yet stressful place. I spent the whole time with her ( bare one night -when I went back to our home to collect some more clothes etc when we realised she would be in for a while) - staying in the parent's accommodation and dh came up to London when he could. It really was a tough time - especially when he wasn't there. That one night - dd1 was to be warmed etc ( she was cooled and sedated post surgery to help her heart repair and calm down from surgery) she had an 'episode' - dh was there and he to this day has never told me exactly what went on.

The big thing was to try and take an hour or so out a day to just breath - step outside the hospital and try not to be institutionalised yourself. I really did feel for other parents who had children that had been there for a year or months or so on. I am not sure how they coped. I can remember feeling very stir crazy at times - just wanting to be closer to our home and dh. ( as you know I am an aussie and so had no family for support and dh's family were going through a tough time and so no physical visits or support like that)

Dd1 ended up back in ICU twice after being moved to HDU once and then once when she had made it back to the ward. Her post op period was described as 'stormy'. Chest drains, special formula to repair damaged lymph system, more oxygen, and so on.

However - we made it through and dd1 is brilliant. Once the repair was done and then done again - she ended up having two open heart ops within three days - she slowly recovered and is now fabulous. Those six or so hours she was in surgery have been the longest hours of my life. I would not let dh leave the hospital - nor would I - so worried that i needed to be near her in case something happened.

I know this is rambling but I guess I just wanted to share how I felt so you might say - yup I felt that to and in doing so not feel so alone....

remember to take care of yourself as best you can. Carys is in good hands as you have explained.....

take care and you and your family are in our thoughts.

Oh Eidsvold, I feel like a fraud when I hear how hard your DD1's first few months were.

We only had a short time in ICU (3 days) and then 10 days in HDU. I found the ICU environment very, very stressful. It was an adult ward - and I particularly found the sad, sad stories of all the surrounding patients and their families hard to deal with. It was good in a way to remember that even when I thought our situation was dire, that there are many, many people out there in a worse off situation. There are so many people in Cape Town who are destitute and couldn't afford the care Carys had. I shudder to think of what happens to their precious little ones when things go wrong.

I often think of your DD1 - she and Thomcats DD are inspirational and have totally, totally changed my outlook on having a child with Downs Syndrome or with any sort of special needs for that matter.

This whole sorry saga has taught me two things:

1. to be grateful and give thanks every day for my happy healthy children
2. if, god forbid, one of my kids has special needs/disability or the like, it won't be the end of the world.

thanks for your post Eids

oh dejags - ICU was an eye opener for us too - when dd1 was born there was a little premie baby in there who had been there for weeks and was still there eight weeks later when we went back to drop in.... like you - i realised no matter how 'bad' it seemed for dd1 - there were other children fighting even harder and facing bigger obstacles to survive. It made dd's situation seem mild in comparison - which after heart surgery - and our few hurdles to recovery - she is brilliant. My dh works in a children's hospital and he often comes home and says - you know - we did have it rough for a little while with dd1 BUT compared to some of the kids - he says we are so fortunate.

You are not a fraud - it was a very stressful situation and a serious health matter to be dealt with. Tiny babies are helpless and when they are very ill it can seem so overwhelming and sometimes like there is no light at the end of the tunnel. But like you did - dh and I just took each day as it came and were thankful that dd1 was still with us at the end of each day.

Hi dejags, I haven't been on mumsnet in a while and rarely post, but very much identified with your situation. Our dd went blue and was rushed to A&E at less than 2 weeks old with RSV. It was deeply traumatic as we were in the out-of-hours clinic when she took a turn for the worse, but the locum GP couldn't work the oxygen cylinder. Thankfully she had thought to phone the hospital first and the paramedics were on the scene quickly, but the wait was agony, dd limp and grey/blue. When they arrived, dd "pinked up" under oxygen, and by the time we got to hospital she was out of danger. She had a lengthy exam in A&E before going straight to ICU and an oxygen tent, but was still having apnoeas every few minutes at the beginning. Stayed with her 24/7 as couldn't bring myself to trust the nurses to hear the apnoea alarm, although they were pretty good. Was trying to express when I could to keep my milk, but was tricky as had to fit it around my dp's visits, and not much support from the nurses here. Had a 2yo ds at the time too who wasn't allowed on the ward (he was the source of the "cold"), and I was wracked with guilt as it was so soon after he had had to contend with sharing me with his new baby sister. Dp held the fort at home and did a sterling job. Unfortunately though I am not over it even today (it was 18 months ago), and still get tearful and panicky when I relate the story. Like the other posters, I found the handling of the babies could be a bit rough, the whole canula/NG tube thing very distressing, and the worst was that they did a lumbar puncture at the beginning to screen for meningitis - I have never heard a baby cry like that. Dreadful. I don't know how these poor parents with very sick babies cope, as our experience only lasted a week and that was more than enough.

On the bright side, there seem to be no lasting problems. A few digestive issues immediately following all the antibiotics (not that surprised that your lo has contracted rotavirus), and perhaps a couple of chest infections in the first year, but nothing much out of the ordinary. Fingers crossed that you find the same.

Anyway, all the very best of luck with Carys's recovery.