Jennifer's Page

Hello
saw this picture that reminded me of one of James. Was your little one in special care?
Steph

Thanks.
How was the op, it is so scary to think that they have to be under GA. They gave us a biper for James op (inguinal hernia) and in 1h30 min I must have visited the loo 12 times because of the worry!
James was 11 weeks early and stayed 8 weeks in special care so I decided to do a bike ride in the summer to raise money for my local SCBU.

Hello
well, no kidding that you are maxed out. Having to do daily trips to the hospital and trying to get some sort of normal lie seems impossible. At least it was when Iwas doing it. I hope that th enext op will help your little one and that you will be able to progress with his feeding and loose the wires/tubes as soon as possible.
All the best

Steph

Hi Jen,
Thankyou so much for replying. I have found no support groups in ireland, and am delighted to have found this one in UK. I am so sorry to hear about Callum - what age is he? Do you have any other children? I really don't know how anyone can cope with more than one when a baby has silent relux. It sounds like you have had a really really hard time of it.
Aoibhín's (Ave-een) weight-gain is great. No problems there, which just means that the docs aren't worried about the problems we have with her! I will suggest the new meds you told me about and hopefully give that a go. As for her solids, it's hard to say whether they make her better or not, as she always seems fine in the daytime anyway, except for short naps. All I have noticed is that she has been off solids for a few days now cos she has a wee bug, and her nights have improved a bit! And as for her formula, up until 5 months old she was very hard work - always cranky day and night, and we were force-feeding her the bottle. The doc said it was all part of her reflux. When at last the doc suggested trying soya, the difference was unbelievable - a new baby! Now she is only unhappy at night. But I will suggest the Neocate milk to the doc too - I have heard it doesn't taste good and some babies may not be too fussed on it - is this true?
The doc has always put me off going to a paed, but I am thinking now of just landing at the hospital with Aoibhín some day soon and asking them to check her out, as I sometimes wonder if there is something else wrong. After researching lots of sites, I get the feeling that other silent reflux babies seem to sleep better at night than Aoibhin does. Myself and my husband have been sleeping in separate rooms for 8 months now to take turns in getting sleep, and it's very depressing. And sleep-depravation can really mess you up.
I don't know why you can't reply to my mail. I wonder if it's something I've done? Must have a look.
Thanks again for taking the time to help - I REALLY appreciate it, and will give all your advice a go.
Take care, and best wishes,
Emma.

Hi Jennifer.
Thanks for your advice. I use the dummy a lot when feeding my son his milk. What would we do without them??? It is such a worry - the weight gain issue. Everyone keeps telling me that it is fine that he has fallen so low on the chart, but it's just not right. His length is absolutely fine, so surely his weight should be too, if that was just how he was meant to be. I know that it's because he is not having enough to eat. I honestly think he just wouldn't eat at all if I let him!! He is also sick quite a bit, so whatever he does eat, half of it comes back up again. The paed said not to worry about this, as he is still putting on weight (even though it's only a little bit!!!0 That seems to be all they are bothered about!! I am also going through a nightmare as I have applied to go back to work part time and they have refused, so I am going through the appeal process. I just couldn't cope working full time and trying to care for my son and make sure he is fed properly and is given his medication etc etc. My mum was going to look after him for the 2.5 days I wanted to work, and she knows exactly what he needs and how he needs to be fed etc. I just hope the appeal goes my way!!! It really is an extra stress that I DON'T need at the moment!!!
Sorry to moan - just had to get it off my chest!!!
xxxx

Thanks - they have breeched every procedure so far, so I think I have got a good case. I am a teacher!!!! I am going to be so resentful if I am having to work full time when I should be at home looking after my son.
Anyway, will let you know what happens. I hope something happens soon, as there's only 4 weeks left until the holidays!!!

Hi Jen

Just wondering how you are doing and how the barium swallow went and wishing Callum is making good progress.
Keeping my fingers crossed for you all.
Helena X

Hi
How has your day been? We have had a good day today. Fraser had a whole 13oz and 3 meals and wasn't sick!!!!! He had 8oz before bed. He's never had this much before!! Hope things are ok with you. I've got a meeting in work tomorrow to try to resolve the situation. My paed has written a fantastic letter about Fraser's reflux and the trials and tribulations that go with it, so am hoping this might help!! Will let you know.
xx

Hi

Hope you managed to get sorted today and that you were treated better than you have been so far. I can't believe what you have been through.
Do let me know how you are getting on.
Take care
xxx

Hi jennifer, hope you are and Callum are well, how is he? have you had the results back yet. Hope every thing is o.k
xx