Any mummies with gtube fed babies?

[yummymummy]

Hi mummies,

am keen to know, do you feed anything else besides milk through the tube?

am afraid my bb now 18months may be iron-deficient cos still only on milk only diet.

btw, how can you tell if your baby is anaemic?

 

[xiaochuan]

Hi

I have a 2 week old bb requiring tube feeding. Anyone got any experience to share? Must it be 2hourly feed? I m actively looking for a helper to cope with her feeding and suctioning needs. Anyone got any experience/ advice to share?

 

[mom@home]

Hi ladies.

My girl will be 3 yo this coming December, and she's still on tube feeding. I refuse to put a permanent tube through her stomach because she can eat pureed/porridge in small amount from her mouth.

To yummymummy:
have you tried to feed Vera orally? Did she have any reactions to certain foods? I think for a 18months old, she should have a mature digestive system, so you can try to give her 'real food' instead of milk alone. You can try to cook meals for her, then blend it until it is smooth & watery enough to go through the tube. When you're cooking, try to use good cooking oil. from the book that i read, the best oil for cooking is coconut oil, because it's the most stable oil in high heat. 2nd best will be e.v.o.o.

To xiaochuan:
I think you should do the suctioning by yourself, don't let your helper do that for you. I think it will be too risky, because suctioning has to be as sterile as you can and you have to be careful when you insert the suction tube. as for feeding, you have to consult with your pediatrician, because if your baby has GERD, then you have to feed your baby in small amount but more frequently.

Hope it helps, ladies!
Don't hesitate to ask more questions, and please mind my english (as I am not local :shyxxx

-nite2!

 

[xiaochuan]

Hi mom@home

Thanks for your advice. I dun really have a choice abt getting helper to suction/ feed my child. I have to get back to work after my maternity leave. The income is important in view of the higher expenses for my child.

May i ask what is your gal's condition? Why does she require tube feeding?

 

[yummymummy]

Hi Xiao Chuan,

Your baby is 2 weeks old so small amounts frequently may be necessary. otherwise may lead to frequent vomitting.

what is your baby's condition? Is baby on nasal or oral tube?

you can learn more from my experiences with Vera when she was a baby here Love and a Leap of Faith: tube feeding

I understand you need to go back to work after maternity leave ends. So did I. But i agree it is not safe to leave a maid to do it (suctioning esp) in her first few months. Financial is a burden for us too, but no choice, one parent has to stay at home in the initial months, at least to train the maid. My hubby took no pay leave to look after baby when I returned to work. Please pm me for a good agent who can help you find a good maid for special needs. That's how I found mine.

You can pm me and we can chat on phone too, as I"m stay home mom.

mom@home:
I've been trying feeding Vera some rice cereal. But I'm lazy to cook stuff to go down the tube. Plus afraid it will clog up the gtube and the device is out of stock worldwide now so it can't malfunction at all costs cos no replacement!

but have been keeping up her feed therapy so hopefully she will eat orally one day. she has swallowing dysfunction so can't really eat thru mouth at this stage so had to put a permanent button in her tummy.

thanks for visiting Vera's blog!

what is the prognosis for Trisomy 22 btw?

 

[mom@home]

Hi again, Ladies!

I'm a new PR here. We moved here to get better medical help for my daughter, born with Trisomy 22 (the most common cause of miscarriage). She was born with ASD (atrial septal defect) in her heart, Tracheamalacea (immature airway, so that the airway will retract everytime she inhaled), and GERD. My girl needs to be tube-fed because of her tracheamalacea, it made her difficult to coordinate her breathing, sucking, and swallowing at the same time.

Right now, her tracheamalacea is no longer a problem anymore, her pediatrician said that her airways is now mature and can function normally, but she's still tube-fed because she still can't take a full meal through her mouth, so my solution is giving her small amount of meal every 2 hours when she is awake, plus Pediasure through feeding tube when she is sleeping.

May, I also find it troublesome to cook meal for my girl and it's quite disappointing when my girl refuses to eat afterwards. So, I use instant baby porridge (Bellamy's or Earth's Best) then combine it with frozen self-cooked veggies. I cooked the veggies once a week and store them in small air tight containers, everytime I want to feed my girl, I just need to take one container then reheat it, then add the baby porridge. Really save my time and efforts.
What equipment does Vera use for feeding? Any feeding pump?
Btw, I might want to have the contact number for your maid agency, I am considering of having a maid sometimes in the near future. can you PM me? thanks!

Xiaochuan,
I understand your position, having a special child like ours takes more money to spend. I considered myself as quite lucky that I can be a stay home mom, although my husband & I have to tightened our belts to cut our personal spending. But it's all worth it as we see our girl is getting healthier day by day. Hopefully you can find the best solution for your baby.

oups...my girl's awake.
gotta go!
talk to you guys later!

 

[rae]

hey all... my 5YO ger has a permanent tube in her tummy since she was 4mths old, cos she had severe GERD and cant tolerate the oral tube. surprisingly, she has steadily put on weight (she's a whopping 18kg now) even tho she's on step 2 infant milk all the while (6mths & above). my PD did mention that infant milk is the most nutritious as milk for the older kids are supposed to supplement normal diet.

yummymummy... are you using the BARD or mic-key? my ger's mic-key keeps leaking, i've changed at least 20 tubes for the last 5 years! am also having a big headache over this. but i also no choice. my ger was born with cleft palate and heart conditions, so it was very difficult for her to swallow. and becos she also has a brain tumor, her prognosis was not very positive so we din want to force her. we juz wanted her to put on weight so that she is ready for any surgery as and when she needs them. now, she refuses anything in her mouth, and will spit out anything we managed to squeeze in. even speech therapists gave up cos dun want to aggravate her heart condition. i really dun see a day when she can eat on her own... but then again, she had GDD, so she is not mobile either, and she is like a 7mths baby.

xiaochuan... i started with 2hourly feeds too, and gradually moved to 3 hourly, then 4 hourly when she started school so we don't have to bring so much milk and always feed. wat i did was to see how bloated the stomach is after you increase the feed. i increase by 10mls each time when she was younger, then when older, i increase by 30mls and test out the stretch of the time. funnily, she was able to adapt each time, so she will oni fuss when the 4 hours is up now. when the child is too young, say below 2 years, have to watch the liquid intake so as not to overload the body. the docs taught us how to calculate according to the weight, but i've forgotten how. pls chk with your PD. but i always exceed, cos someone taught me to feed water in between feeds, cos it will help the child grow in height. sounds weird, but she heard it from another mummy, and both theirs and my ger did really grow in length once we started the water feeds.

yummymummy... to test for anaemic, press on the palm or the sole, the spot will turn white, then slowly go bac to red, then not anaemic. but the best way is of cos to do a blood test. if you are worried about diet, you can try adding stage 1 or 2 cereal - i give nestle cos got flavours like vege, brown rice, honey and wheat. (and also nestle is cheapest). i also give brown rice, and recently, our docs at kk recommended us to feed her bottle food as her potassium was very low after her heart op. go for stage 1 or 2, which are very very fine and melts into the milk, so no problem abt clogging up the tube. to be very sure what you are giving is close to liquid consistency, you can mix with water first then add into milk. i find tat usually if the packaging states stage 1 or 2, it shd be fine cos they are meant for babies to swallow anyways. i also give her a multi-vit-mineral soy formula to help in her stools and also to give her more nutrients. i dun make food at all, cos i'm not confident of the consistency. and becos she can oni take so much, watever i give her is usually with added vits & minerals which i think is more useful for her growth.

*whew* sorrie for the long post! tats wat you get from 5 years of tube feeding! hehe...

 

[rae]

xiaochuan & mom@home... after going thru 10 maids in 5 years, i hv to say its really your luck whether you can find a maid who can tube feed, or rather dare to. when i interview them over the phone, i always mention they need to tube feed, but being village people, most of them have no inkling wat is tube feeding, but i also always mention they will always need to go hospital so they know they are going to care for a sick child. despite this, there are still a few who are so scared, or cannot understand simple english instructions, and we return them immediately, cos there is no way we can ever train them to take over. we will usually observe for 3mths before teaching tube feeding, and we are also lucky cos i am a stay home mum. finances are tight too, but getting a good maid is really as hard as winning the lottery these days.

 

[yummymummy]

Rae: Thanks for sharing your experience. I think I'll start her on stage one and two stuff when she turns 2 years in a couple of months. She's put on weight now on Pediasure. And you're right must increase slowly like 10ml per time otherwise gets tummy bloated.

They say tube fed kids put on weight fast...i also don't want her to put on too fast and become heavy and lazy to move.

I have a feeling Vera will not take food orally too. Seems to dislike stuff in her mouth now...sigh - but it's ok lah. Actually tube feeding is less stressful, don't have to worry so much whether she eats or not and sleeping also can feed. Trying to look on the bright side!

 

[rae]

They say tube fed kids put on weight fast...i also dont't want her to put on too fast and become heavy and lazy to move.

I have a feeling Vera will not take food orally too. Seems to dislike stuff in her mouth now...sigh - but it's ok . Actually tube feeding is less stressful, dont't have to worry so much whether she eats or not and sleeping also can feed. Trying to look on the bright side!

yaya... dun be like my rac, so fat and lazy!! somemore she's got daddy's fat genes, so docs always warn me, dun feed too much. tats why i dare not try pediasure. but then again, i always feel tat she already not eating, so poor thing, so can't diet her also mah. last time i always say i muz beef her up for her heart op, cos she sure lose a lot of weight aft such a major op and 2 weeks in ICU. kaoz... she din even lose 1 kg!! ha! so now daddy is very strict, no more increasing milk, so i increase water instead. hehe...

and i agree abt the "benefits" of tube feeding. 15mins or less gao dim everything liao. no need to coax, no worries abt teats rejection, no worries abt taste preference. i buy avent bottles give away the teats. but i used to be very uncomfortable feeding in public, so we try to be discreet or use baby rooms where possible. hubby heck care. ystr at expo he juz sit at table and feed openly!

i loved the pic of your hubby with vera. i think we are both very lucky our hubbys love our kiddos. in fact, i always complain hubby loves her more than me! and he is also very hands on with rac since a baby. i even went travelling with frens and he took care of rac alone. now i get off days once in a while and i've got nothing to worrie. :red:

 

[rae]

yummymummy... wat tube is vera using? i read abt your buttonmare, and juz to assure you, we are using the mic-key balloon, and it does fall out by itself, very often unfortunately, cos the balloon always leaks, for wat reason we dont know.

i used to panick abt tat too, but hv gotten used to it. was told tat altho the tract will close by itself, it will not be so soon tat we cant get help. wat you do is always to pop the button back in, give it a wash if dirty, and you can still feed using that. juz tape it down aft feed, then bring her to the A&E and they can replace for you. for us, ours is easily replaced so we always hv spare tubes on hand, and we juz replace ourselves.

i was also told tat shd the A&E not have a button of the rite size, they can always put in some tubes so that feeds can still be done. (they can always put them on drip anyways) so the most impt is to keep the tract clean. i dun suppose you hv looked into the tract before? sounds gross, but its actually quite nothing. juz a hole. no blood, or flesh. confirm. hehe...

rac kenna infection arouud the tube before also. you can try taping down the tube after puting a gauze underneath so to minimize movement of the button cos rac likes to rub on it too. i buy this brand call HOJO cos it is less sticky than 3M tapes and so less abrasive to the skin. if use 3M, skin will be red from the tape. juz hv to change more often but it is a lot cheaper than 3M. not all pharmacies sell, but mustafa is the cheapest. gauze i buy from watson's, non-sterile. thin, but good enuff.

 

[yummymummy]

yaya... dont be like my rac, so fat and lazy!! somemore she's got daddy's fat genes, so docs always warn me, dont feed too much. tats why i dare not try pediasure. but then again, i always feel that she already not eating, so poor thing, so can't diet her also mah. last time i always say i must beef her up for her heart op, cos she sure lose a lot of weight after such a major op and 2 weeks in ICU. kaoz... she did not even lose 1 kg!! ha! so now daddy is very strict, no more increasing milk, so i increase water instead. hehe...

What milk powder is Rac taking now? At first I was worried Vera same weight for a year, now on Pediasure, growing super fast! Scary man this milk powder, I'm also increasing water, and giving Pediasure in diluted amount (more water to milk). Can see the difference already...becoming fatter and lazier. Don't wanna sit up anymore...sigh

and i agree about the "benefits" of tube feeding. 15mins or less gao dim everything . no need to coax, no worries about teats rejection, no worries about taste preference. i buy avent bottles give away the teats. but i used to be very uncomfortable feeding in public, so we try to be discreet or use baby rooms where possible. hubby heck care. ystr at expo he just sit at table and feed openly!

I also buy avent bottles, those with sealing discs. I used to hate pple staring when we feed in public. now got used to it.

i loved the pic of your hubby with vera. i think we are both very lucky our hubbys love our kiddos. in fact, i always complain hubby loves her more than me! and he is also very hands on with rac since a baby. i even went travelling with friends and he took care of rac alone. now i get off days once in a while and i've got nothing to worrie. :red:

Yes hubby support is VERY important. I get off time too...plus now I preggie so he agreed to get a maid to help me...very lucky indeed. Yes hubby seems to love her more than me! :wemask:but ok lah, better than dun love her right then I cannot :wong20: liao!

 

[yummymummy]

yummymummy... what tube is vera using? i read about your buttonmare, and just to assure you, we are using the mic-key balloon, and it does fall out by itself, very often unfortunately, cos the balloon always leaks, for what reason we dont know.

i used to panick about that too, but have gotten used to it. was told that altho the tract will close by itself, it will not be so soon that we cant get help. what you do is always to pop the button back in, give it a wash if dirty, and you can still feed using that. just tape it down after feed, then bring her to the A&E and they can replace for you. for us, ours is easily replaced so we always have spare tubes on hand, and we just replace ourselves.

i was also told that should the A&E not have a button of the rite size, they can always put in some tubes so that feeds can still be done. (they can always put them on drip anyways) so the most impt is to keep the tract clean. i dont suppose you have looked into the tract before? sounds gross, but its actually quite nothing. just a hole. no blood, or flesh. confirm. hehe...

rac kenna infection arouud the tube before also. you can try taping down the tube after puting a gauze underneath so to minimize movement of the button cos rac likes to rub on it too. i buy this brand call HOJO cos it is less sticky than 3M tapes and so less abrasive to the skin. if use 3M, skin will be red from the tape. just have to change more often but it is a lot cheaper than 3M. not all pharmacies sell, but mustafa is the cheapest. gauze i buy from watson's, non-sterile. thin, but good enuff.

Vera is using BARD. How come yours is Mickey? At KKH, standard protocol is to give BARD. I love the BARD. No risk of popping out. Heard so many moms with Mickey popping out it's become more common than uncommon. Plus BARD is flat, so good for lying on tummy and doing physiotherapy. Ever consider changing to BARD? You'll love it! Very low maintenance. If you're worried about the yanking out part when change every 6 months, it's a temporary pain, like kids getting injection. Only pain at that moment only.

I must check out this HOJO. Been looking for a tape for Vera's sensitive skin. If you have spare can send me one to try out? I can tt $$ to you. do pm me. good idea to tape the button down. thanks for the tip!

btw, is Rac in Rainbow? Vera is in rainbow too...

 

[xiaochuan]

Ladies,

seeing all your posts above makes me a bit scared. My gal is still on NG tube feeding.all these G tube... buttons .. MICKEY sounds very intimidating

 

[rae]

Yes hubby support is VERY important. I get off time too...plus now I preggie so he agreed to get a maid to help me...very lucky indeed. Yes hubby seems to love her more than me! :wemask:but ok , better than dont love her right then I cannot :wong20: !

ya true... rac is also v lucky our families and frens hv never rejected her frm day 1. all the grandparents dote on her, and our frens teach their children to accept rac too. and becos she doesnt need any "machine", we are able to bring her out to "interact", and of cos, to school too. rac was in rainbow yishun till may tis year, when we took a temp whithdrawal to prepare for her heart op, which was eventually postponed till august. i wanted to bring her bac in oct, but then i would hv to pay for nov & dec holidays, so the teachers told me juz go bac nxt year lor. i've requested for mon, wed, fri 2 hourly so still waiting for them to inform me of the session timing. which rainbow is vera at? we may hv met each other!

 

[rae]

Vera is using BARD. How come yours is Mickey? At Kandang Kerbau Hospital, standard protocol is to give BARD. I love the BARD. No risk of popping out. Heard so many moms with Mickey popping out it's become more common than uncommon. Plus BARD is flat, so good for lying on tummy and doing physiotherapy. Ever consider changing to BARD? You'll love it! Very low maintenance. If you're worried about the yanking out part when change every 6 months, it's a temporary pain, like kids getting injection. Only pain at that moment only.

I must check out this HOJO. Been looking for a tape for Vera's sensitive skin. If you have spare can send me one to try out?

we started with bard too. we gave up on the BARD cos it din work too well on rac too, and it was too painful to remove. rac has to be held down by 5 ppl cos she is so strong! there was too much pain and blood so we dun wan her to go thru tat again. besides, no stk no also rite? even tho the mic-key fails us often, at least it is painless and easy to change. we did try the bard balloon also, but the cover cant cover properly after oni 2 wks, which is worse, so i guess we stick to mickey ba. lucky the sale exec is v nice gal, she will give free exchange if damaged within 2mths.

do u know mickey mummies? cos i change so often, i've got some spare tubes, might as well give away, dun waste. can email me their contacts? i've PM you re the hojo. if u dun get tat, you can email me at rynare@singnet.com.

having button doesnt seem to affect rac on her tummy. we tot it wld be pain, but she din really care leh. she was flipping like nobody's biz 3 wks aft her heart op, when her rib cage was held together oni by wires. we are so paranoid, but the docs say if pain, then she wun do it, so we let her be lor. my ger is like a bull lah!

 

[rae]

Ladies,

seeing all your posts above makes me a bit scared. My gal is still on NG tube feeding.all these G tube... buttons .. MICKEY sounds very intimidating

xiaochuan... not everyone needs a button. i hv seen children who are CP, unable to move, but drink milk faster than i drink water! juz do wat the therapists teach you to do.

and re your request for EIPIC, usually they will oni accept children when their medical conditions are more stable, cos initial stage may need some regular med appts to ascertain the kid's conditions. my ger oni started at 2.5 YO, tho can start from 6mths (usually best for down's syndrome). at this moment, most important is to let her major things stablise first, then plan other things like therapy, other consultation (like eyes, hearing).

do you know how to tube feed her yet? i'm sorrie i got a bit lost on your story. is your ger still in hospital?

 

[xiaochuan]

Hi Rae,
thanks for your advice.
yes... my gal will be 2month old in a few day's time. She is at home with me for almost 4 weeks.
I tube feed her and do suctioning. Each feed and suction is a pain in my heart really. I try hard not to think abt it.
I read the blogs of kids with similar conditions. All can live so long despite many complications. Mine case, no complications... happily and quietly living in "veg" state.

 

[yummymummy]

do you know mickey mummies? cos i change so often, i've got some spare tubes, might as well give away, dont waste. can email me their contacts?

dun know any...only know Bard mummies. Your gal sounds like a really feisty huggable gal. any pix can email me?

 

[yummymummy]

Rae: What milk powder are you giving Rac?

Has any one tried Nestle Nutren Junior? It's meant for tube feeding for 1 -10 year olds.

Pediasure is also for tube feeding cos of its complete nutrition but it's so sweet Vera keeps farting. Also think that its high sugar content could be making her feel lethargic.