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.

Hiya,
Like I said before dd4 didn't have RSV but has spent time in PICU and on oxygen. When they were trying to wean her off it would be a case of turning it down a bit,if her sats dropped the oxygen would go back up a little then down a bit and so on. It took time,but we did get there eventually.

Ds had a liver transplant 8 weeks ago, and we got home a week ago.

He was in PICU so many times, high dependancy care wasn't enough for him - he wanted the Rolls Royce level of care!!

He was weaned off O2 rather than going cold turkey. He hated the nasal canula at first but soon got used to it. Maybe the blast of O2 is hurting her nose? Have they tried a mask?

Remember - it will get better, and time is one thing you all have.

hi.its intersting about the physio,as my dd2 was improving but then had physio(who used more aggressive techniques than the previous one had)and it was about an hour later she started having severe breathing difficulties.it turned out a hard bit of mucous had come away in her lung and blocked her airway.i cant help thinking that this was due to the physio.

they weaned her off the o2 gradually,but every time they withdrew it completely her sats dropped and they put it on again.the consultant told the nurses to try her for a good few hours without o2,even if her sats went down,as she was staying very pink etc and he doubted the reliability of the sats monitor.but they just ignored him,and i would go to the loo or something and come back to find her back on o2.it was very frustrating.

Urgh, Dejags, re the hamfisted physio. Had a similar experience with a nurse - she was impatient, and rough with the babies I expect she was just knackered, but still - it was horrible not to feel trusting in dd's care that night.

Has Carys been on nasal canula all along, or did she 'progress' to CPAP? Mischa hated the canula, but they really didnt' fit properly at 4 weeks - her nostrils were too tiny - so they kept falling out. She did hate the CPAP mask/cap, apparently it hurts their little noses which is why they are given breaks from it every six hours or so, if they can tolerate it. She was weaned off that slowly, then never needed the canula type O2 again - her little room mate was the opposite, came off CPAP fast then needed O2 via canula for another week or so.

Hang in there, xxx to Carys and to you...

Anyone else feel like migrating to warmer climes come October and the start of the next RSV season? I do!

Sorry she's back on the o2 dejags. Dd had a 'headbox' when she was being weaned, and then the mask but not on, just wafted nearby as she lay in he cot. Nasal canula must be uncomfy especially with an ng aswell.

She'll get there.

Hope your ds is doing well coleyboy.

Saggar - ds is doing really well thank you. He has been thriving since we got home.

Hi, my daughter was admitted at 6 days with breathing probs,going blue. RSV was discounted as it was july and for a while they thought maybe a heart prob but thankfully not. They never found out what it was but she was on oxygen for 10 days and it was hard weaning her off as she dipped all the time. In the end i asked that the sats moniter be switched off so we could baby watch rather than monitor watch.She was pink and happy - my argument was that any v young baby prob has sats dropping when they are feeding,wriggling etc. In the end one of the paeds agreed to this and we went home 2 days later. Hope things really improve soon.
She is nearly a yr old now and in the early days we were at tyhe docs at the slightest hint of a cold but she has been fine. I had 3 other children at home and it was the hardest few wks of my life. I didn't stay in with her at first because i wasn't able to feed her and if i held her she got distressed smelling my milk. I expressed and luckily after the nasal canula and ng tube came out she took to feeding from me again so don't lose hope with that.

So sorry your little girl is so ill. Haven't had time to read all the posts but I wanted to respond to the one where you said you were having trouble bf because of the nasal prongs. My ds was premature and spent 7 weeks in NICU/HDU/SCBU and was on o2 prongs for several weeks. They didn't seem to cause him much discomfort (apart from when they were going in) and didn't get in the way much when bf, even with a ng tube in. I think the hopsital had different sizes - do they have a smaller size prongs they could try on her? Also, maybe you could take the prongs out and use a mask when bf? Ds had frequent desats when feeding so when the prongs had come out we had a mask that we could hold next to his nose when he was feeding. I fed him in the "rugby ball" hold, sort of tucked under my arm just on one side, which is recommended for prems/small babies and helped not to squash his rather small nose into my breast - might help keep the prongs out of the way? Our SCBU had a bf counsellor to help with these kinds of problems, maybe if there is one at your hosp they would see you even though you're not in SCBU.

Really hope Carys does well and is home with you soon. It must be very hard, especially with two others at home.

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Me too.

(how is your little boy Megglevache?

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Hi all,

Wow, I can't believe it's been 12 days since this all kicked off. It feels like a lifetime.

Carys is doing so much better. She has been off 02 for 11 hours and has maintained her sats

Yesterday we had a terrible day though. The doctor sat us down and said that he has suspected that she has a PDA (patent distal arteriosis) - a congenital heart defect which could account for her slow recovery. He had suspected a murmur from the time she was admitted but because of the RSV and secondary infection it was difficult to distinguish specific sounds. Although a PDA is not the end of the world and is easily remediable, both of us were gutted. It just felt like the straw that broke the camels back. I took it especially badly. I went home and cried and DH and I had a huge row .

This morning the paediatrician took another listen - he is now fairly certain that it is a physiological murmur - which is absolutely FAB news. We are going to another hospital for a specialist to have a look at her tomorrow to rule out anything funny but the doctor is quite certain that it will be ok.

The BEST news of all, is that as long as the tests tomorrow come out ok, he thinks we can go home tomorrow evening.

I'll keep you all posted.

love
dejags

Oh, great news Dejags.

I bet you can't wait to get your little girl home.

Much love to you all xx

Oh dejags - sorry that you had such a bad day yesterday. Hope you get good news tomorrow, both with the tests (I'm assuming they'll do an Echo) and then that you'll be able to take Carys home.

Will be thinking of you and have fingers crossed.

Hope you and dh have made up - it's very stressful for both of you. Take care.

and for you, Dejags. What a rollercoaster ride for you.

Excuse my ignorance, what are the two heart conditions you mention and why is the murmur less serious?

Hope you get home tomorrow!

suedonim - A PDA is a connection between the aorta and pulmonary arteries. It's a sort of 'left-over' from the foetal circulation. It is more common in prem babies can mean that there is a little too much blood going to the lungs.

Hopefully the murmur is innocent and just a result of Carys's heart working hard because she has been unwell.

Hi Suedonim,

The doctor explained that in a fair percentage of infants (particularly prems) there is an audible murmur. It is most often just to do with the physiology of their unique heart and nothing to worry about.

He was more concerned yesterday that she had a PDA (patent distal arteriosis). I'll try and explain but may not have it 100% correct. Basically, when the baby is in utero, there oxygen supply between the lungs and the heart is bypassed because the baby receives all the oxygen it needs from the placenta. Once the baby is born, this bypass should close so that their own lungs take over. In some babies this doesn't happen with the result that blood flows back into the heart and this causes problems. Obviously this condition is more serious than a physiological heart murmur.

Sorry Saggar - you put it much better than me.

In answer to your earlier question - yes she will have an echo. The top cardiologist with paed speciality will be doing it.

I have been reading on how they do it. Do you know if they routinely sedate the baby?

In the UK they don't routinely sedate, no. They may do so for Carys as she's probably going to drop her Sats if she gets upset. That said if it's an experienced technician doing the Echo it shouldn't take too long.

Dd has been succesfully sedated in the past using chloral hydrate.

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dejags, so glad Carys is doing well and that the murmur is not expected to be anything serious after all....can imagine the extra strain you must have been under worrying about that (and the row, such a natural time to have one, with all the stress!).

Everything crossed for her to be home tomorrow....

ps Mischa was sedated for four days in a row, using chloral hydrate, because she just couldn't settle with CPAP mask on and she needed to rest. It worked very well, from what I could see, and she had no ill effects.

Aha, I understand now, thanks for the explanations.

Dejags - hoping the news yesterday was good and that you now have Carys home.