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(20 Posts)
jenlynn Fri 02-Feb-07 21:38:56

Anyone out there had to have there baby tube fed. My baby girl is 7mths old and feeding poorly now refusing bottles but taking solids. Weight is poor and not gaining. We have until Wednesday to decide whether or not she needs to be tube fed, and to see if she picks up and feeds more. So far not looking good. So worried and unsure what we have to face when she comes home. Any advice or anyone had the same experience? Thanks.

merryberry Fri 02-Feb-07 21:47:49

Hi my only experience was of doing it for a week for mine in NICU just after birth. It was deeply comforting to know the milk was getting in to him. I preferred it to drips and drip solutions. It seemed to cause him and me no distress at all in terms of tube being placed. Of course, he was so young he would not of noticed.

I am so sorry I cannot share more relevant experience. I don't know why you are being asked to decide so fast, if she isn't losing weight? She isn't dehydrated? She may just be into tthe solids for a brief while. My mate's kid did this when solids were quite now.

Anyway, I hope someone more useful comes along for you soon, good luck.

merryberry Fri 02-Feb-07 21:48:21

quite new, not now.

Saggarmakersbottomknocker Fri 02-Feb-07 21:48:47

jenlynn - there's a thread in special needs at the moment. The mum is trying to wean her dd off the tube but she'll be able to offer you some insight.

It's here.

My dd was tube fed from 4 months for around a year. Have you been given a reason why she doesn't feed? Have you been given advice with regard to increasing the calories she has or do you use supplements for example calogen or maxijul.

jenlynn Fri 02-Feb-07 22:17:49

My dd has had no end of tests and so far so good.She took ill at the beginning of December and has just gone down hill from there.She only weighs 14lbs and dropped 2 centiles, so yes she has had a big weight loss and gained a little but is now losing again. Had a nurse force feed her and now she turns and screams as soon as she sees a bottle. I wondered about trying the medela special needs feeder? I am so lo and just trying anything and everything to try and get her to take her milk. She was on Neocate as she couldn't tolerate any other milks but has now been put on infatrini.We are only just now seeing a dietician. Saw consultant yesterday to discuss options and he feels that she really needs to go onto the tube to gain more weight.I just feel so alone and feel you have to fight for everything. I have a 6year old with Aspergers and ADHD so this isn't new!Thanks so much for replying.

LowFatMilkshake Fri 02-Feb-07 22:24:30

My DD was tube fed for 3 days in SCBU - not quit the same, but now I have a S to compare her to I think tube feeding really helped her.

It got her in a good routine and meant we could be sure what she ate and that it would stay down.

Good luck!

NineUnlikelyTales Fri 02-Feb-07 22:26:43

I have no experience of this but just wanted to send you hugs, as this must be a very worrying time for you. Good luck with whatever you decide, I'm sure all will work out for the best.

Saggarmakersbottomknocker Fri 02-Feb-07 22:29:43

It's horrid when they don't feed and it makes you feel such a failure . What was the initial illness that started the weightloss. And did she feed fine before that?

TBH the tube was good for us in that it took that pressure off. dd was really sick (heart problems), she needed the tube to survive. It's not pleasant having it passed but once it's down they don't notice it. The only thing is they do tend to pull them out quite often. At first she had everything down the tube as she wasn't allowed to suck.

Would the plan be to keep on with her solids and top up her calories via the tube? And how long do they expect it to be in?
The dietician should be able to prescribe supplements that you can add to her solid food. And you can increase her calories in other ways too - adding cheese to mash, making porridge with cream, that sort of thing.

I hope this helps and that if she has the tube it's just a short term thing to get her stronger.

If you've any questions just ask away.

jenlynn Fri 02-Feb-07 22:30:52

Thanks guys for your support, so appreciated! Will let you know the outcome.

jenlynn Fri 02-Feb-07 22:41:19

Thanks saggermakersbottomknocker for all your help and guidance.She had 2 really bad chest infections and could not fight them without several courses of antibiotics. So ever since then she has not been the same and more and more problems are occuring.Obviously the first test was for cystic fibrosis and then went from there.I have no idea how long they are planning to keep her on the tube but yes, I was told she could still have solids.
From birth she constantly brought her feeds back and had severe colic and very unsettled and uncomfortable.However she did gain weight and quite steadily well up on the chart. She was 7lbs 8oz at birth.You think by the time you have a 3rd it woul be easier but this is certainly testing all areas!!
I guess I can only hope that they have tested for everything possible and that this will be short term.As you know it is hard to stay positive when you are around the situation 24/7.Thanks again jenlynn

Saggarmakersbottomknocker Fri 02-Feb-07 22:48:05

lol dd was my 3rd and at first I thought she was so good because she slept all the time. Then she started to vomit all her feeds and lose weight, UTI, anaemia, chest infections followed. Loads of tests later they finally discover she's in heart failure . The tube was a godsend in the end as she could have all her meds down it too.

I do hope they get to the bottom of it all soon and if the tube is the way to go then it's shortlived.

Stay in touch.

SparklyGothKat Fri 02-Feb-07 22:51:04

All my children have been tube fed, as they were premature. DD1 and DD2 came home with the tube still in place, Its quite easy once you get the hang on it, and like evryone else I was glad the milk was getting into the,
Good luck

Weegle Sat 03-Feb-07 09:29:16

Like some of the others my experience isn't quite the same but my LO was tube fed as a newborn for a while because he had blood sugar problems meaning he simply didn't have the energy to feed and they needed to get milk in him fast. Like the others I actually found it reassuring having the tube there as I knew he was getting what he needed and he wasn't bothered by it at all.

With regards to the refusing milk my nephew is 9 months and weighs only 16lb - was often losing weight. He has refused milk for the last 3 months and was only taking solids. He also has a major sickness problem. But 3 weeks ago they removed all dairy from his diet and he's like a completely different boy, gaining weight etc and gone back to taking milk (dairy free) no problem. Sometimes little ones know what is good for them and he was clearly refusing the milk because it was making him unwell - maybe your daughter is trying to indicate something similar? My sister was advised to bulk calories in to his food as much as poss e.g. avocado, banana etc - so what they do take is giving them as much as possible.

I really hope they sort things out and your daughter improves soon, it is so worrying when they are unwell.

Saggarmakersbottomknocker Wed 07-Feb-07 11:15:58

jenlynn - how's she doing? Have you made a decision about the ng?

jenlynn Fri 09-Feb-07 18:32:34

Hi Saggermakersbottomknocker, sorry for the delay in replying. The following morning LO was admitted. She is now on NG been very sickly both ends so they have finally put her back onto Neocate and are adding neccessary supplements. Going to Alder Hey Children's hospital In Liverpool probably on Monday for throat and swallowing scans. She has just broke out in Chickenpox which could also explain a lot. We have been told that she will probably be coming home with NG and are going to be trained up for it. I have been so ill with flu since Tuesday hoping to be better by Monday.Hubby is now in hospital with LO. Will keep you informed. Thanks.

luath Sun 11-Feb-07 17:41:23

Hi Jenlynn, how are you doing with the NG? How's your Lo? I've been thinking about you alot the last few days and send you all my love. I know just how difficult your situation is as my LO also has an NG due to unexplained refusal to suck on her bottle! The good news is my LO is thriving now with the tube and we now just have to try her take enough orally to get rid of the tube. I'd say she currently now takes half of her daily intake orally so we've still a way to go but hopefully the end is in sight! You really do have my deepest sympathy and if you want to know anything about tube feeding just ask. I will try to help you where I can. Love Luath

jenlynn Fri 16-Feb-07 11:19:54

Hi luath thanks for your support and reply. I have just got home form hospital. LO has ng tube in. Going to have a silk one fitted next week. Is that what your LO has? How old is your LO now? I was told that she can only have the plastic tube in for max 6mths.Is this the same for you. Feeling a little stressed as house is chaotic. I need to get re-organised and I will feel better about everything.Lovely to hear from you.Thanks again jenlynn.

luath Tue 20-Feb-07 21:41:48

Hi Jenlynn, so good to hear from you. I'm glad you are out of hospital. How's your lo doing? Is she gainging weight now? We also have a silk tube. It lasts for approx 6 weeks before we need to change it for a fresh one. My dd also is on infatrinin milk....hi calorie stuff. Have you learnt or are you going to learn how to pass the tube? Did the doctors ever discover why your LO refused to take her bottle? My LO is still a mystery to the Drs but I'm learning to accept that that is just the way God made her! Look after yourself Jenlynn and keep in touch. If you want to know anything about tube feeding just ask and I'll help in any way I can.

jenlynn Tue 20-Feb-07 22:14:34

Hi luath, so nice to hear from you. Supplies arived today. Going to pass silk tube on Thursday with a little help from a local nurse. Doesn't seem much different to the one my lo's on now apart from having to remove the wire at the end. My dd's slowly gaing weight. I am going to children;s hospital on 2nd March for an x-ray of her throat just to check wether there is any problems in there. Everyone's holding there breath for that day to come and then we can go further with whatever result we get. I am like you and thinking they may not ever get a reason or diagnosis it might just have to be something we live and deal with.My lo is under the speech therapy/feeding clinic now so I guess they will come up with a plan on where to go and when. Will let you know results.Thanks again jenlynn.

luath Wed 21-Feb-07 10:59:33

hi Jenlynn, Good to hear from you again. The silk tube is no problem really as you say you just need to remove the wire and check its in her tummy. We too are under the care of the speech and language feeding folk so they try to help us with moving from the tube hopefully back to oral feeding. It is a long road and it is a struggle but as we have no diagnosis its just something we have to get used to and live with until shes big enough to do without it. I'm so glad your LO is gaining weight though. It is so worrying when they don't eat or gain weight. At least with the tube she isn't going to come to any harm. Please let me know how you get on on Thursday and the results of the tests to look at her throat. Thinking of you loads. Love Luath

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