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22/11/2013 at 18:00
How are you feeling today? How's your day been? How's the feeding and the nappies going?
I am able to write this now as A is currently in the sling as we reached the 5pm witching hour! Do you get that too?
We're trying the nutramigen again tomorrow - I'm really nervous about it as last time she refused to feed and screamed all day and night. I'm really worried we'll get all that again but I know we need to try it again before we go back to the paediatrician otherwise they'll just send us away telling me to try it so the can rule out an intollerance and it'll be another 4 weeks before we get seen again.
22/11/2013 at 18:30
Gatecrashing. I really feel for you guys, often keep an eye out to see how you're getting on. Ours used to be about 6pm, well all day but inconsolable 6-9pm. Sleep helps enormously. For you I mean. Days when I'd barely slept were worse, everything felt too much to deal with. Are your H's helping out? Even if you can go get a bath in peace.
Re: the nutramigen, give it a go, but stick with it for 2 weeks, even if she seems worse. A tip I found, as its broken down, it's a lot easier to digest (once they're used to the taste) so Henry was screaming after 2 hours. Unbeknown to us it was because he was hungry. He went from drinking every 4 hours to every 2. Bear it in mind in case your lo is the same. And good luck, you're doin a great job x
22/11/2013 at 19:45
Missus S, you're not gatecrashing at all! I always welcome your advice - it's really helpful to hear from those who have been through it. God I hope it doesn't make her more hungry - she feeds every 2 1/2 hours as it is! I don't think I could cope with twice as often! I'm in 2 minds about the nutramigen - I don't want to try it again in case she takes to it again like she did before but then I kind of hope its the answer as nothing else seems to be working. I just keep hoping and waiting for the day she grows out it.
22/11/2013 at 21:50
22/11/2013 at 21:52
Can i poke my head in too?? I would suggest again my little Nutramigen trick. So if say you are giving 6oz bottles, do 5 scoops of your usual milk and 1 scoop of Nutramigen for the first day. On the second day do 4 scoops of usual milk to 2 scoops of Nutramigen etc until by day 6 you are totally on Nutramigen. The paediatrician told me to do that and its the only way I could get P to drink it. I tasted it and it is *foul*. She was so much happier on it though. The alternative is Neocate (which i think MissusS uses) and that tastes even worse by all accounts! If Nutramigen works it will change your life (yes, seriously!!!).
I really really sympathise. P used to cry inconsolably for 4+ hours every day. It was exhausting. She only slept for a total of 30-40 mins during the day in chunks of 5 mins (or less!) and her silent reflux was causing her so much pain. It was awful. Now we have the reflux meds sorted and she is on Nutramigen. On the plus side, because Nutramigen tastes so bloody awful if makes weaning a doddle! She eats everything i give her as anything must taste better than that!!
We finally got P sorted at 5 months (after some ***-kicking from me!). Please dont let it go on as long as i did. The main reason we were referred to a paed is because i scored very high on the PND scale and they realised how much it was affecting me. You seem to have to fight to get reflux or milk allergies sorted and you might need to get tough and kuck some butt. I walked out of one of my GP appointments (i had to see 6 different ones and then it was my hv that got it sorted) after they told me P would grow out of it by a year!?!?! My response to that was if you left an animal in pain for a year you would be prosecuted but its apparently ok to do it to a baby. Not sure they were too impressed!!
I really hope you get everything sorted too. P is a happy smiley baby now and a joy to spend time with. I love every day instead of waking up dreading another day of hearing her cry for hours in pain xx
22/11/2013 at 21:57
22/11/2013 at 22:00
P's "thing" to get her to sleep was me standing and either swaying or pacing. As soon as i sat down she woke up!
22/11/2013 at 22:23
MM, please - the more the merrier! (Well, as merry as you can be when your baby cries all day!) A is exactly with same with the sitting down thing and wants nothing to do with her crib! I really like your idea of introducing the nutramigen gradually - the only problem I have is A is currently on anti-reflux milk which has to be made from hand-hot milk whereas i think the nutramigen needs to be hot water doesn't it? I could always use just normal formula though maybe? I don't understand why they have to taste so nasty a surely they could have made something a bit nicer when it's for a baby?! I'm glad you've just described feeling the way you did as I feel so guilty when I wake up with that feeling of dread and I thought it was just me.
P - I read somewhere that walking up the stairs is a good way to get difficult wind up, not sure if that has anything to do with it?! I'd give if a go but our stairs are really creaky and I'd end up waking my eldest! Glad to hear you've had a better day and the nappies are settling down a little. How long has he been in the renatadine for now?
I have to say, I'm loving this little support group we've for going on here - it's reall helping to know others are going through it, have been through it and most of all there does seen to be a light at the end of the tunnel
22/11/2013 at 22:40
You are definitely not alone! I used to feel awful too for feeling that way. I used to feel useless when i couldnt make it all better for her because thats all a mummy wants to be able to do.
I make Nutramigen up with hand hot water. I think it says you should boil and leave for 30 mins but i cheat as its just not practical. I do it in an ass-about-face way but it works for us! I have a spare bottle in my cupboard with cold boiled water in (i refill it after making a bottle). If i am making an 8oz bottle i pour 2oz of freshly boiled water into a clean sterile bottle and top it up to 5oz with the cold boiled water so the water is then still quite hot. I add the powder, put top an and roll bottle between hands to dissolve powder so that ticks the box for adding powder to water hot enough to kill bacteria but not boiling, then i take the top off and add the last 3oz of cold boiled water so its the right temp to feed straight away. Sounds complicated but its super quick!!
The only issue with mixing anti reflux milk with Nutramigen is it might be too thick to get through the teat? I wonder if just for the week to get onto Nutramugen you could get a few cartons of ready to drink formula and mix it with that?
I know its tough now but it does get better i promise. I was so down and desperate to know what to do. On one very dark day i even wondered if i had made a mistake having another child - an awful feeling i will never forget. P is nearly 7 months now and a totally different child. We are on reflux meds now called Esomeprazole. Its very good but notvwidely prescribed as its expensive!! It dissolves more easily than Omeprazole and easier to administer than ranitidine apparently. Keep fighting!! Xx
23/11/2013 at 12:54
Well, bottle 1 went down ok but I'm still waiting her to protest! One thing I did notice was that she was quite sicky with this bottle - it was quite watery with curdled milk in it (sorry for the tmi!) I will just have to keep on and see!
MM, thanks for all the words of support - it does really help.
To everyone, hope you're all having a good day x
23/11/2013 at 13:19
Was that a bottle of Nutramigen? I guess if it was and she is used to anti reflux milk it would have been a lot thinner. Remember Nutramigen will only make a difference if the reflus is due to a milk allergy. Is it ranitidine you are on? If you find she is still very refluxy it might be that you need other meds instead of or as well as the Nutramigen. Nuteamugen is quite a different make up to usual milk so i guess the sick would be quite different x
23/11/2013 at 14:29
23/11/2013 at 18:56
Grrrr, wrote a bit reply then it kicked me off as I tried to post!
Well, A has been taking the nutramigen today but has been really unsettled and has cried most of the day. I'm not sure if its a coincidence or whether the change in milk has irritated her reflux. I'm just going to have to wait and see what she's like once the old milk is out of her system and she's used to this one. I'm not convinced it is a cmpa but the renatadine and domperidone don't really seem to be doing much and I know we need to try this before they will suggest anything else.
Popcorn, really glad to hear you've had a better night and the renatadine seems to be working for you! I really hope it carries on improving.
Hope you've all had good days and have a good night - I'll be glad when today's over and it's another bad day done x
24/11/2013 at 08:56
24/11/2013 at 12:48
Hey, how did S sleep last night? A slept from 11 till 5.30 which is a miracle but I think it must have been because she was so tired from not settling all day as she's really unsettled again today :-( I think it's about 48 hours for it to be out of her system so hopefully we might start seeing an improvement after tomorrow. If not, it'll be back to the hospital and back to the drawing board.
24/11/2013 at 14:47
24/11/2013 at 16:15
So, glad S slept well again last night! Just seen his pic on your other post and hes gorgeous! They must be in cahoots with each other as A is having an unsettled day today too - wont sleep and won't be put down. I feel like I'm back to square one again - this milk really seems to be irritating her reflux.
MaisieMoo, you said it gets worse before it gets better - is this what you meant?
We're nearly out of her Meds so I've got to go to the docs tomorrow to get some more. Going to get them to check the dose too - that's I'd they give it me. Last time I went, they said they couldn't do the prescription so I might have a fight on my hands!
And to top of my day, E has just stolen a cornflake cake out the fridge that we made, choked on it and then threw up all over the living room carpet! Great!!!!
24/11/2013 at 16:35
Thanks MD, I love that photo of him, it cheers me up when we're having a bad day to look at that.
Sounds like you really gave your hands full today, lets hope we have another good nights sleep out of our little ones x
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