Teeny-tiny and tube feeding

[SuzeQ]

Hi there :) My name is Suz and i'm pretty new to all this (and a little bit shy!)

My DD was born 8 weeks early and, after 11 weeks in the nursery, we bought her home with a nasogastric tube in. Liv has severe reflux, hence the trouble establishing feeding and i am wondering if there are any other tube-feeding bubbies and Mummies out there and any advice - especially on how to deal with the unwanted attention while out and about! The docs have also started talking about continuous feeds for night and the possibility of a PEG as we are getting nowhere establishing feeding and are back to 3 hrly feeds.

Thanks for taking the time to read this:D

Suz

[srguitargirl]

Hi Suz
I love the new pics ! I'm sure these girls can help you there great ! come join us on the chat thread :wave:

talk to you over the weekend if your home

shauna

[Nowhere]

hi hugs hun

Im a bit of vetran tube feeder unfortunatly, any questions you have ask away my DD has been tube fed for almost 2 years has an NG tube for 15 months then a Gastrostomy button ( like a PEG) and now she has a Gastrostomy jejenostomy button she feeds 24 hours aday into her intestines

As for unwanted you learn to ignore it, if people ask what its for just tel them its a feeding tube and carrying walking you will find more people stair rather then ask KWIM i found that more anoying, thats the beauty of a PEG no one knows

What feeds is your bub on, reason i ask is becuase if it is a nutricia feed then you are entitled to a FREE hire of there infinity pumpits the best smalest and coolest pump on the market (lol i love our infinity) you dont get the flow error like you do with the kanger pumps and it is ok if it tips over if you want the number to cal them let me know

What state in australia are you

[Loopy Linda]

hi

i know nothing about tube feeding ( sorry) but i do have a few friends that know a little something!

ahould come to our special needs thread ( seeing as you LURK anyway) lol.

we even have the esteemed bubhub moderator chosen award winning supportive of feeding other than breast category winner in there.

seriously there is 3 (? julie edward on tube?) or maybe jsut 2 other tube feeding mum there.

and also we recently had an escapee from our group ( sabrina you out there somewhere?) so there is an opening!!!!

come say hi and tell us about your teeny tiny tube feeding princess!

[SuzeQ]

Liv is currently on Pepti-junior which we get free through the HEN program at the hospital. They are ridiculously conservative there though - we are thinking continuous feeds at night so as to have a bit more room to play with feeds during the day and the dietician actually phoned today and suggested continuous feeds during the day!!! thought the idea was to establish feeding...get a bit hungry, want to suck etc!! I was so cross, this is the help i am supposed to be getting. She can tolerated bolus amounts but only of about 60mls. I don't really know too much about pumps, only that Liv was on one in hosp when first starting feeds. But this is the learning curve that i am on!! My EMCHN has been talking about PEG's for the last few weeks...pead has just clicked how old Liv is too so i think it is just a matter of time, unless she will learn to drink her milk! But she has a very sensitive gag reflex and she is still in pain with feeds.

We are in sunny Melbourne, been herre almost 6 months now - and have seen four hosps!!! Looking forward to our Perth holiday in 2 weeks...and looking forward to meeting my neice!!!!!!

[Nowhere]

cool if your on pepti then thats through nurticia the hospital get it from them so you would be able to get the free pump YYAYAYAAYy lol

The continuos feeds in the day sound a bit silly to me they would be better to run feeds at night then feed in the daywe do 24 hour feeds as thats the only way we can get needed cals into her kwim

We are in perth too, its nice and hot here of late

[LivinOnAPrayer]

:hugs:

Welcome! And your little miss is soooo cute!
Ask AMY!! lol, miki's mum. She's a legend at 'other than oral feeding' lol.

I hope Liv decides to start drinking for you! :wave:

[SuzeQ]

Thats what i thought too re feeds...

It's funny what you get excited about now hey? I love new syringes and when i do her tape really well!!! Sounds like you have been doing this a long time and pretty full on too!

[Nowhere]

oh you like new syringes lket me get you a link to a US site that sells the best syringes and so cheap they last ages so i am told beter then the ones we get i am of to order some tonight glad you remided me

with tapeing we had load of fun trying to find the best way to make it last lol
this is a great way curtusy of my friends reneta posted pics of it tapeing her DS, miki was such a night mare i couldnt take step by step pics

Step one:

Put on skin protector (in this case duoderm). I leave a gap between nose and cheek so it doesn't peel as quickly

http://pic20.picturetrail.com/VOL242/894432/15952382/261452833.jpg


Step two:

Cut a small piece of tape, put a slit almost all the length of it. Stick the tape by the ear with the slit pointing towards the nose. Put the tube inbetween the two sides of the split and cross them over and stick (this stops the tape peeling when the tube is tugged)

http://pic20.picturetrail.com/VOL242/894432/15952382/261452840.jpg

Step three:

Cut a longer bit of tape and make a small slit at one end. The slit end will be pointing towards the ear. Stick this on the length of the tube starting at the nose and stopping when you have covered the cross over part of the first piece of tape. The slit should sit over the tape underneath, again to help stop it peeling.

http://pic20.picturetrail.com/VOL242/894432/15952382/261452852.jpg

http://pic20.picturetrail.com/VOL242/894432/15952382/261452851.jpg

then step 4 ( which reneta doesnt do so no pic)

Is to get another skinny piece and stick it to the side of the nose then loop it over the tube and stick to other tide of tube so you get a loop so no litle fingers can pull it out

[SuzeQ]

ahould come to our special needs thread ( seeing as you LURK anyway) lol.

he he I promise i wasn't!! i had a very quick look around. I'm just a massive procrastinator!! thats why no post till now :)

[srguitargirl]

Ahh Suz we forgive you now you've jumped in the deep end we are never letting you out LOL

[SuzeQ]

LOL Shauna - actually working this whole posting caper out too!!

Amy, loved the pics of the taping and i am definately interested in getting some good, cheap syringes. They do supply them from the hosp - like 5 at a time...stingy!! I would rather get our own!

Taking this grumpy princess off to bed...

[kiwibird27]

Hello SueQ, just got around to reading this. My DD has been tube fed since 1 week old, along with several months on TPN instead. She won't tolerate bolus feeds either, gaggs on 40 mls, even after a fundo. So we run continuous feeds 20 hours a day. Amy knows heaps so she has probably covered most things.

Would recommend a peg asap, unless they are talking about a fundo, then would do both at once, 1 GA instead of 2. It's alot easier and less stressful than an NG!!!! Megan (DD) has severe gagg reflux too and wouldn't take a bottle or any liquid from anything full stop!!!

The pumps are easy once u get used to it, a little to easy sometimes, I have just started DD on solids, and actually having to fed her is a HUGE shock. Megan doesn't understand the whole hungry gotta eat thing so if I was u would try and persist with bolus feeds during the day, even if she will tolerate a higher rate overnight and less during the day, so she doesn't lose that "MUST EAT" feeling.

[naiwen]

Hi there,
Edward was IUGR also and came home on tube feeds, Amy is the real expert on tube feeds but I will help where I can.
Please do join us in the chat!

[Harps4]

Hi Guys

I have a 10 week old fully nasogastric fed little boy by the name of Kaden. Kaden was born with Hypoplastic Left Heart Syndrome which is where his left ventricle failed to develop in utero. He had open heart surgery when he was 3 days old to "replumb" his heart so his right ventricle did all the work. Due to the operation and the fact that these babies do not have the energy to feed, he has been tube fed since birth.

Our current feeding regime is continuous feeds overnight from 9pm to 9am and then 3 hourly bolus feeds (fed over an hour via the pump), this works for us. Kaden is also on Pepti Junior but will see if he tolerates Karicare next week as they thought he had a cows milk protein intolerance but we think it was the polyjoule they had added for extra calories.

Which hospital do you see in Melbourne SuzeQ? We are from QLD but are in Melbourne for Kaden's operations and are under Royal Children's Hospital.

We have only been out a few times but have been asked on numerous occasions what the yellow tube is in his nose, i simply say its how he feeds. You do get the stares and the strange looks like "why does he not just use a bottle" look!!! i just try to ignore it which is hard for me as i am so self conscious myself and hate to stand out in a crowd, oh well, cant avoid it now.

Is the hospital wanting to put a PEG in because of the reflux issue or is easier in the long run than a nasogastric tube? I know families that have fed via tube well up to childs 2nd birthday and have been ok with this. Has Liv ever had a nasojejunal tube or NJ tube at all? this tube goes further down and into the intestine and does require continuous feeding. Kaden had one in for several weeks due to reflux.

Let me know if you have any questions at all.

[Nowhere]

Hey welcome to the tube feedng thread, sorry to erhe you litle one is having a hard time.

IS he due to have more surgery or is his heart doing ok now poor baby

My dd is stil tube fed at the age of two like the kids you mentioned she has NGTs for 15 months then moved to a PEG after he fundo now she has a Gastrosomy jejenostomy combined tube one G for draining and J for feeding

[Harps4]

Hi Mikenzees mum

Yep, Kaden has to have another operation in 3 weeks, once he has recovered from that one we can go back home to QLD then he will have another op between 4-6 years of age.

I dont know how you cope with mikenzee having all those tubes for feeding, your amazing!

[Nowhere]

Good luck for his next op hope all goes well
:hugs:

as far as how we cope as you know you just do