Post by tantalizintina on Jun 5, 2008 10:44:34 GMT
I cant cope anymore, lewis is the most wonderfull little boy but he just wont feed... most he will take from a bottle is 2oz... his food takes 4 ever. he dont drink juice. i cant cope anymore.. i dont wana go out cuz hes worse at feeding when out.. i only get chance 2 wash my hair maybe once a week... i look an awful mess. i just wana be happy again and the only time im happy is when im asleep... i read ur threads and look at ur pictures and everything seems so "normal"......... ive cried all mornin . i cant cope and i dno who 2 turn 2... when does things get better? wen will he eat without it keep coming out of his mouth? im so ashamed that i cant cope but i have made an appointment 4 doc on monday,, i must do somethin b4 its 2 late
I still have dodgy days believe me. When things are too much I make sure my hubby or sister can take over so i can take a breather. You sound like you need some you time. As for the food, \im not really sure what to advise only that i can sympathise with the time it takes to feed, Lucy is terribly slow, but it is improving. Im sure the light at the end of the tunnel is close tina, little Lewis is a lovely little boy and a credit to you. But please take any support that you can from friends families and "health proffessionals" and you need to put your needs first as well as Lewis's. Do you have a local DS group?
I really hope that doesn't sound patronising, but i wanted to reply quickly xxx
I wish we all could live a little closer cos then we could support each other in the flesh so to speak. I'm sorry to hear that things are still tough for you, but pleased that that you have made a docs appt , shame they couldn't see you earlier. Things aren't all 'normal' but they're normal for our kids so for me its normal to have appts for Rachel , for me to have to explain to people that no she's not walking because.... I can't really help with the feeding problems, as Rachel after a rocky start feeds well now. Is your Health visitor any use at all? because she is the one who should be maybe getting you some help. My health visitor introduced me to homestart, they have voulnteers that support families who are having a tough time for any reason. They helped me through a particularly blackpatch. If you'd like just to talk I can send you my phone number, my e-mail address is in my profile. Susan
You should never feel ashamed, you are a wonderful Mum and Lewis is a gorgeous little boy. Have you called your Health Visitor out. Does Lewis want his milk or is he just not bothered about it. If he isnt bothered I would leave him for a while and not give him milk and then see if he gets hungry and wants it. Or maybe he doesnt like the milk he is on. Is he still on infitrini coz that is really filling to them.Could he not have his feeding tube put back in for a while until he is feeding properly. You should definitley take some time out, Lewis will be fine for a few hours with your husband or sons. Even if you just go for a walk just getting out for a couple of hours on your own will do you good. I really hope you get things sorted soon so you can enjoy little Lewis for the gorgeous boy he is. Sending you hugs. Debbie xxx
Post by tantalizintina on Jun 5, 2008 13:14:18 GMT
im scared 2 call the hv as im worried of wat will happen next...i know we wont b left alone.. he is on infatrini but his consultant says he should b on 6x120ml feeds.. he takes average 10oz aday... he takes 4ever with his food.. its in its out its in then out again... until gradually its fluid... i wish i'd have called the doc b4 but its very hard to admit how ur feeling isnt it...
Its so hard to know what to say to help. Maybe he doesnt like the teats, or maybe he just isnt that bothered about milk. Its all very well for doctors to say he should be taking a certain amount but thats easier said than done. Does he have wet nappies and is he putting weight on, if so I wouldnt beat yourself up about it, I know its stressful and worrying but your not doing yourself any good and you need to be there for Lewis. He certainly looks healthy in the photos. I would definitley call your Health Visitor, she is there to help you not judge you and she maybe able to put you in touch with a DS group or other people who can help. Hugs to you. Debbie xx
Tina will he take yoghurt/fromag frais, lucy loves them and i console myself that even though she isn't taking all the milk she should she does get some calcium?? She also went through a stage of all her food coming out i was told it was a tongue thrust and she's stopped doing it as much now.
Tina ,any Health visitor worth her money will realise that this is a difficult time you're going through , support you until you no longer need or want the support and then just be there for you. When i struggled to feed Rachel her first 2 mths, my HV came every week sometimes twice a week, she was concerned not only at rachel's poor feeding but also my well being. Once Rachel began to feed better, visits dropped back to fortnightly, monthly and now I haven't see her since Rachel's 1st b'day - but i know I can ring & she'd be round like a shot if i needed help. I'm sure yours would be the same if you rang ...
I couldn't believe that I was struggling with feeding this tiny baby, after all I'd done 3 children no probs and i did get very down over it, cried alot, spent time in me nightie for big parts of the day but they do turn the corner& so did I. Your little Lewis, well all of you have been through so much, come so far, you are being a brilliant Mum, and asking for help doesn't change that ,it will help you & Lewis even more. Love & hugs Susan
Oh right I see why it might be more difficult for you. Not meaning to be sexist but I've never come across a male health visitor. Do they have an female ones at your practice? Maybe you could change Hv. but that's no help right now is it. I think tongue thrust is just the way to describe how their tongues go in & out their mouths more than other children. Rachel's used to go in & out alot as well especially when we started weaning, we'd spoon food in ,she'd thrust her tongue out & out would come the food!
I was told the tongue thrust corrects itself,or they just get better at controling their tongues, its because their mouths are smaller. when they push it out you just have to push the food back in and they do get used to it.
Hi Tina, First of all BIG HUGS to you. You are a brilliant mum and you have had alot to deal with over the last couple of months, so don't beat yourself up. Just to let you know I had a very bad day with Henri on Tuesday he is teething and he wouldn't stop crying all day, (he has the most awfal high pitch cry that goes right through you), nothing would settle him. I haven't really got anything else to add the other girls have said what I would have said, make sure you get some ME time and we all have bad days. Take care Love Anita
Oh Tina I hope you are ok. You don;t have to feel ashamed just for asking for help. A mum at our downs group requested a different health visitor so maybe you could get a different one. I wouldn;t feel comfortable talking to a male one either. We all get stressed and down from time to time but it doesn;t seem like there has been any let up for you so no wonder it is all getting too much. Don;t be afraid to tell your doctor exactly how you feel, I'm sure they have heard worse and they won't judge you. It could be down to postnatal depression aswell. Does Lewis have a dummy? Our speach therapist said (when George was tiny) that it was a good way to strengthen the muscles in their mouths. Also could he have his tube back in for a while just to give you time for things to settle down and for him to gain some weight, I'm sure you would feel a bit better if you could see him gaining weight - although he looks great in his photo's. Have you got the downs syndrome weight charts in his red book? Do you have any contact locally with anyone else whose child has ds? For me, going to another mums house for a coffee was a turning point, I'd felt very isolated to begin with but it does help so much to see other people who understand exactly where you are coming from. And you've always got us lot on here. Lots of love and hugs xxxxx
Hi tina, sorry didn't get back on last night ,have to fight with teenage daughter to use pc. The thing with the tongue is like Claire says as they get older & muscle tone improves so does the tongue control, the speech therapists are very good at helping with this sort of thing . Have you had any contact with anyone fromyour local child development centre?
I hope that in some small one having all of us on here is helping, & that on mon. the doc is able to help in a positive way . Hope to fight my way back on laterto see how things are for you today- off to make a b'day cake for hubby - 52 today! love & hugs Susan
hi tina sorry not been around this week my pc is poorly sick and needs work so had to depend on my dd so never got the chance to get on.sorry you feeling like this, i am with you too babe same problems with charlie and his feeding or lack of, have you a dietician for lewis i spoke to one today and she was really helpful. lew.is looks a great weight ,and he looks happy and healthy!!!!!!! every professional i have spoke to has dictated what charlie needs to eat and how much but they will only eat want they want too babe and no amount of trying will make them, you cannot force feed to keep them happy.i was always the same as you even writing a list daily of all charlie drank i was paranoid but in the end i just cracked up cos i was told he needs this amount and like you i couldn't get him to have it, i spoke to his paed and said although he needed it let him take what he wants.i learned to relax a little after that and stopped being paranoid, charlie was so tiny 1lb 14 ounces at birth and they said by the time he was one he would have caught up he still hasn't lol, and he is so happy at the mo all he is eating is a bowl of rice krispies a day but what the heck he's happy and smiling and reasonably healthy. try and let him take the lead babe so you can relax a little. As for the tongue thrust hun i think most of our babes have dun it and they do grow out of it ,we used a dummy to help with improvin muscle strength . sorry to rant on hun but i really feel for you,and this was me 2 years ago but i kept it all to myself for so long and did'nt have anyone to talk to and i just exploded in the end and i really dont want this to happen to you. you have my number darlin so remember i am here even just for a chat or moan . hope all goes well at the docs monday make sure you let us know how you get on take care and lots of hugs n snuggles for you and lewis xxxxxxxxxxxxxxx oops forgot how much does lewis weigh now?
Hi Tina, I've just read your thread and just wanted to add my support and big hugs. Is there anyone there you can talk to and/or ask to take lewis - even if only an hour or two? Harry had a similar start in life to Lewis and I think when you're going through all the trauma of the hospital admissions, heart surgery etc you just keep going because you're on automatic pilot iykwim - then that part is over and you're left at home to try and get back to some kind of normality, I think that's when the stress of the past few months can hit you. I'm glad you've made an appt to see your dr, you need some kind of support network around you there too, friends/ family or a health visitor - mention this to your gp on monday if you're not happy speaking to the health visitor you have been given. I can pm you my phone number if you need anyone else to chat to Tina, let us know how things go. Take care xxx
hi hun what age is lewis again he may not be ready for food might not like texture and that like another has said try giving yoghurt and dairy products to bump up for the lack of milk hun im not much use
Hi Tina, hope you are feeling ok today I just looked in George's red book and thought you'd be interested to know that George was only 13lb 9ozs at 6 months old - this was before his heart surgery and he dropped to the 25th centile on the downs weight charts. Since then he has slowly crept back up and is now following the 50th centile which is the one he was on when he was born. hth xxxx
Rosie is still only 15lb 20z and she is 9 months old! She is up and down like a yo yo and weighed 7.5lbs at birth which was good considering she was over 3 weeks early. Since then tho is has been one constant struggle to get her to put on weight even with a feeding tube! Weaning was a nightmare and tongue thrust was a speciality with her milk, dummy and food lol. However she started eating 'suddenly' about a month ago so we took the feeding tube out to see how she did. Slowly (over a period of 3 weeks) she put on 7 oz but unfortunately this last weekend she got another little tummy bug (3rd this year) and have just had her weighed and she has lost 5 oz in 1 weeks. Am holding off calling the dietician or hospital cos i am scared they will either admit her for observation and/or put the feeding tube back in. We all seem to have the same problems at one time or another and its fantastic to have this support from each other. Make good use of it Tina and as i have said on my PM's to you - you know where i am. If you want to chat personally i can send you my phone number. Don't be afraid to ask hun.
p.s It would help me aswell to have someone to talk to too who really understands. Any volunteers who i could talk to out there? Michelle x
H i Michelle, I haven't had the same probs with feeding etc but happy to talk anytime. I am in West Sussex too - Bognor Regis . Where are you? My e-mail is in my profile if you want to get in touch. x Susan
Hi Michelle, Sorry to hear Rosie has been poorly, it can feel really frustrating sometimes when you feel you're getting somewhere and then they lose weight again. It's really encouraging that she's shown signs that she wants to eat so that bodes well for when she is feeling better. Harry eats loads now (he is 4 years old) and he is still very small for his age. He had an ng tube for a similar period as Rosie, this was mainly because he was very poorly but as he got older and stronger he slowly started to accept different foods and now he'll eat most things. I used to worry about his weight but in the end I decided as long as he was eating and drinking enough to keep him well then that was the main thing. As others have said, sometimes the health 'professionals' can keep banging on about their weight but at the end of the day we can look at our little ones and tell if they're getting enough.
Pm me if you'd like to chat offline. If Rosie is anything like Harry (and it sounds like she is) it will get easier as she gets older. Take care xxx
Only tips I can offer hun are ditch the bottles and try a sippy cup, one that runs if you tip it, not one they have to suck on.
Also when spoon feeding I used to keep the spoon in her mouth a little longer so she would kind of lick it off the spoon... ygwim???
OMG hun the tears I have cried in getting Holly to eat. I had to give up on bottles in the end and just NG'd her, it was too upsetting and stressful, she was taking less and less each feed. So I just concentrated on the solids and told the dietitian that too. They soon accepted it when she started to eat better and better.
Also when she sat with food in her mouth doing nothing with it, I shoved her dummy in... LOL naughty but works a bloody treat
At the end of the day the NG is not evil, its not a big sign to the rest if the world that says I am a terrible mum and can't feed my baby. If the lil ones need it they need it. And you are a better mummy for letting them have what they need. Holly has been on and off her NG since she was born.
For the first time ever she has actually managed to maintain her own weight and put a bit on herself.
Concentrate on the solids hun.
Oooo what do you try him with BTW??? Home cooked or jars???