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Difficult choice WWYD?


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#1 whatnamenow

Posted 08 January 2013 - 08:01 AM

Have been tossing and turning about where to post this.  Either here or in the babies,kids with disabilities section.  Finally decided on here because i wanted general opinions as whatever i choose i will have to justify it to everyone.

New baby DD has been having some serious feeding issues in the past 4 weeks.  Reflux, dismotility, vomiting, weight loss/poor weight gain etc.  We have finally learnt that she was allergic to my breastmilk and cannot tolerate the normal larger volumes of food that she should be having at 8 weeks old.  

Since the beginning there has been talk about tube feeding her in a medium/long term way if another reasonable solution can't be found.  So far though we seem to have found out what works.  Elemental prescription formula in 60ml amounts every 1 and a half to 2 hours.  However this is exhausting for us. Even with DH and I sharing the load overnight.  DH is only home full time for another 2 weeks and I am meant to be returning to work in 3 weeks.

So here is my WWYD/WDYT?

How long would you be able to continue feeding every 2 hours?
Would you think me selfish if i was to say I wasnt coping and ask about the possibility of doing the tube feeds anyway?
Which way would you choose?

Doing it this way she is finally gaining weight but DH said last night he found me asleep on the couch patting her to sleep.  ( no problem there) but aparently he said when he moved her to take her to bed i didnt realise and was patting an imaginary baby for the next hour till the next feed.

#2 axiomae

Posted 08 January 2013 - 08:07 AM

Tube feeding isn't a bad option. For lots of mums it's the only option. You may already know deep down that what you're doing isn't sustainable, particularly if you have to go back to work soon.

What would be a worse outcome - your gorgeous baby being fed happily, or a sleep-deprived mum having a car accident on the way home from work because they are so exhausted from being up all night feeding said baby?

#3 WithSprinkles

Posted 08 January 2013 - 08:09 AM

I think you do whatever you have to do to cope. Obviously you won't be able to keep going on like this (especially when you return to work). Do you have any family or friends nearby that could take it in turns to pop in for a few hours each day (I.e. come when it's time for one feed and stay til the next feed) so that you can at least get 6 hours sleep?

#4 Phascogale

Posted 08 January 2013 - 08:21 AM

Even with the tube feeds you may still have to feed her every 2 hours if her stomach can't tolerate larger volumes.  However tube feeds are relatively quick and you don't have to wake your baby when you feed at night.

I would definitely speak to someone about this, even if it's done for the short term (the doctors may find a different solution sooner rather than later).  You can also bottle feed during the day and tube feed at night.

You need to be able to function so that you can look after yourself and your baby.  Can you also speak to a social worker (at the hospital?) who will be able to tell you about any extra resources and services that can help you?

If you're able to, see if you can get an extension to say home a few extra weeks till you have a better idea of what's happening with your baby and finding ways to cope.

#5 YodaTheWrinkledOne

Posted 08 January 2013 - 08:21 AM

Do what works best for you, your baby and your family.  If that means tube-feeding for a while, then so be it.  Maybe you can do a combination?

#6 FeralLIfeHacker

Posted 08 January 2013 - 08:24 AM

I'v been breastfeeding almost 2-3 hourly for about 6 years  but I don't work. I do co-sleep and lay down in bed so not having to fully wake and make formula helps me not feel too sleep deprived.

I know nothing about tube feeding so cant comment there.

I think you have to do what you think will have the overall best benefit for your family, taking everyone into account.
I don't think you should have to justify your decision to anyone though?, it's your family, you and dh know what will make it best for you guys, no-one else has to do it.
Goodluckx


#7 ubermum

Posted 08 January 2013 - 08:30 AM

I would tube feed. Sleep is just as important as food for the growth and wellbeing of a baby. At least with tube feeding, you possibly wouldn't have to wake her to feed and she would get more uninterupted sleep.

#8 Corella

Posted 08 January 2013 - 08:35 AM

How about an overnight nanny type to help with the feeds? Tube feeding is still going to have to happen regularly and there are risks/complications with it that I'd personally avoid if at all possible.

#9 Corella

Posted 08 January 2013 - 08:37 AM

How about an overnight nanny type to help with the feeds? Tube feeding is still going to have to happen regularly and there are risks/complications with it that I'd personally avoid if at all possible.

#10 YodaTheWrinkledOne

Posted 08 January 2013 - 08:39 AM

QUOTE (Corella @ 08/01/2013, 08:35 AM) <{POST_SNAPBACK}>
How about an overnight nanny type to help with the feeds?

how expensive is something like that?  for a couple of nights, that's possibly attractive.  But as an ongoing thing, it might be unrealsitic

#11 TillyTake2

Posted 08 January 2013 - 08:41 AM

From someone who has a now 2 year old that struggled with all the things you are going through & who is still on neocate & a restricted diet I would do the tube feeding.

Have they discussed an endoscopy? I'd be considering it. We had it done when my son was about 16 months & I wish we had done it sooner.

All the best xx

#12 TillyTake2

Posted 08 January 2013 - 08:45 AM

QUOTE (YodaTheWrinkledOne @ 08/01/2013, 09:39 AM) <{POST_SNAPBACK}>
how expensive is something like that?  for a couple of nights, that's possibly attractive.  But as an ongoing thing, it might be unrealsitic


There are a lot of options for things like this at little to no cost for women with post natal depression (which is common when you hae a baby with high needs). You'd need to speak to a psychiatrist (preferably a perinatal one). Your gp may also be able to help but mine didn't tell me/know of these services.

#13 No girls here

Posted 08 January 2013 - 08:51 AM

I think you do what you have to do to cope.  You need to take into account your own mental well being as well.

That said, DS3 was up 1-2 hourly every single night from 4 months to 9 months and I found my body did adjust.  I was tired, but nowhere near as tired as I would be now if I was getting up 1-2 hourly.

Going back to work does mean added stress, and TBH I would probably give the tube feeding a go.



#14 whatnamenow

Posted 08 January 2013 - 08:52 AM

QUOTE (Phascogale @ 08/01/2013, 08:21 AM) <{POST_SNAPBACK}>
Even with the tube feeds you may still have to feed her every 2 hours if her stomach can't tolerate larger volumes.  However tube feeds are relatively quick and you don't have to wake your baby when you feed at night.

I would definitely speak to someone about this, even if it's done for the short term (the doctors may find a different solution sooner rather than later).  You can also bottle feed during the day and tube feed at night.

You need to be able to function so that you can look after yourself and your baby.  Can you also speak to a social worker (at the hospital?) who will be able to tell you about any extra resources and services that can help you?

If you're able to, see if you can get an extension to say home a few extra weeks till you have a better idea of what's happening with your baby and finding ways to cope.


They are talking about a trans pyloric tube bypassing the stomach with a continual feed pump so i would have to get up every 4 hours to swap over feed but thats normal and doable.  Was thinking yes that we would bottle feed during the day but maybe tube feed at night. Staying at home a few weeks longer is not an option.  its go back to work or not at all.  I am already thinking the only option either way is not at all but that means we would then have to move as we couldn't afford this house.

QUOTE (TillyTake2 @ 08/01/2013, 08:41 AM) <{POST_SNAPBACK}>
From someone who has a now 2 year old that struggled with all the things you are going through & who is still on neocate & a restricted diet I would do the tube feeding.

Have they discussed an endoscopy? I'd be considering it. We had it done when my son was about 16 months & I wish we had done it sooner.

All the best xx


They are talking about that maybe happening at around 12 months old.  Maybe quite frankly its hard to keep remembering what all the different doctors are saying and some of them contradict the others.

Next weigh in and doctors appt is this friday so will discuss it with them i think.

edited because i am so tired i wrote way instead of weigh.

Edited by charlottesmum04, 08 January 2013 - 09:47 AM.


#15 FluffyOscar

Posted 08 January 2013 - 08:58 AM

If you alternate 2-hourly feeds overnight, you should each get 4 hours of uninterrupted sleep.

I would delay tube feeding until Charlotte's stomach is bigger.

How is her eye?

#16 Guest_~Karla~_*

Posted 08 January 2013 - 09:04 AM

I found the overnight slow tube feeding much worse than the hourly feeds TBH.

The pumps malfunction and alarm so you have to get up and fix it and it wakes the baby so you need to resettle them. If it's hot where you are, you can't just fill the bag up and go to bed - you only put in what you need for an hour/hour and a half so you need to keep getting up to top the bag up anyway. The baby rolls over or moves around and disconnects the tube so you end up with a wet cot that needs changing and a wet hungry baby that needs changing and now feeding. Lots of kids vomit more on continuous feeds, unless you get up and turn the pump off for an hour or so to give their tummies a break. They vomit or pull the tube out and then you need to put it back in and retape it - this involves LOTS of screaming, often another vomit and then takes ages to resettle baby back to sleep afterwards. The bags are a huge PITA to clean out every day - takes way longer than washing the bottles up.

Honestly, the tube feeding broke me. When the doctors suggested we put the twins on 100% tube feeds at 13 months, I lost it and refused. It took another hospital admission plus a week at a "sleep school" for the extra assistance, but after a month I had them both feeding 100% orally (every 2 hours) and gaining small amounts of weight.

I know my situation was different in that I had twins, so was up twice as long/twice as often, but it was so much harder than I imagined it would be. I thought the tube feeding would mean I got more sleep (pre-tubes I was up at least every 1.5 hours for at least 45 minutes for the feeds, plus dealing with the vomits) but I got much less.

I know other people who had much better experiences with NG tubes, but that was our experience and it was horrible. I really feel for you, because there's not many options for you and none of them are sustainable long-term. I hope you find a solution that works.



#17 emnut

Posted 08 January 2013 - 09:05 AM

For those reasons, and because you have found something that is working I would hold off for now.  We had similar tolerance issues with DS1 which meant that he was fed at a similar intervals when he came home.  We were also both working at that point (different shifts so one was always home).  Over time we were gradually able to spread feeds out & feed more.  I would say it was about 3 months that we were feeding slightly under 2 hourly.  At first it was exhausting but we did adapt to it.



#18 TillyTake2

Posted 08 January 2013 - 09:07 AM

Where are you based op? Feel free to pm me if you want to chat/ask anything. I know how hard it is sad.gif

#19 Guest_~Karla~_*

Posted 08 January 2013 - 09:11 AM

QUOTE (emnut @ 08/01/2013, 09:05 AM) <{POST_SNAPBACK}>
For those reasons, and because you have found something that is working I would hold off for now.  We had similar tolerance issues with DS1 which meant that he was fed at a similar intervals when he came home.  We were also both working at that point (different shifts so one was always home).  Over time we were gradually able to spread feeds out & feed more.  I would say it was about 3 months that we were feeding slightly under 2 hourly.  At first it was exhausting but we did adapt to it.


I'd say there's a good chance the OP is looking at the regular feeds being a long-term thing. My twins were 15 months old before they could go 3 hours between feeds, day or night. That's a fricking long time to be severely sleep deprived and not at all comparable to a newborn who will eventually grow out of it.

#20 TillyTake2

Posted 08 January 2013 - 09:22 AM

Tube feeding an older baby is very very different to a young baby. Just keep that in mind.

#21 emnut

Posted 08 January 2013 - 10:24 AM

I realise that Karla - we had 3 hourly feeds for the first 12 months overall (it was 2 hourly that was 3 or so months) so I had that experience too - I still wouldn't switch to tube feeds for the fact that it doesn't help with the situation easier as such and from talking to the drs when we made a similar decision (in that DS could feed himself but had issues tolerating normal volumes) for many of the reasons you yourself pointed out.

#22 whatnamenow

Posted 08 January 2013 - 10:36 AM

QUOTE (FluffyOscar @ 08/01/2013, 08:58 AM) <{POST_SNAPBACK}>
How is her eye?


Thats the thing that really made it obvious it was my breastmilk.  Turns out her eye was an allergic reaction.  Within 24 hours of starting the new formula it was cleared up completly.  When i think about all the breastmilk put on it to clear it up on the advice of the MCHN's...  laugh.gif


QUOTE (TillyTake2 @ 08/01/2013, 09:07 AM) <{POST_SNAPBACK}>
Where are you based op? Feel free to pm me if you want to chat/ask anything. I know how hard it is sad.gif


Will pm you.

I think i will just discuss it with the paed's on friday.  Particularly if i get the paed reg who is really nice.  She seems sensible in giving advice thats not too far either way.

#23 Guest_~Karla~_*

Posted 08 January 2013 - 10:54 AM

Sorry Emnut, my reply came across as a bit harsh before. I just wanted to make sure everyone realizes that this is very different to a normal baby waking pattern that they will grow out of soon.

OP, I think that's a good idea. Make sure you get them to discuss all the negatives as well as the positives with you. Tube feeding certainly isn't a walk in the park but it may be the best thing for your baby for now. Just please don't expect it to make life loads easier because you may end up as sorely disappointed as I was!

Edited because I forgot words.

Edited by ~Karla~, 08 January 2013 - 11:14 AM.


#24 Colleer

Posted 08 January 2013 - 01:43 PM

One thing that tube feeding does is take away the anxiety that you probably often feel over whether or not your child is getting enough to drink every. single. feed.

My youngest was NG tube fed from 4 mths to 9 1/2 mths, then gastrostomy button was put in (just got it removed in December  ddance.gif ).  Whilst tube feeding is not pleasant, it serves it's purpose.

Before my son was put on NG feeds, every single feed I would worry about whether he was able to to drink enough (he had a weak suck and poor swallow), so every feed I would concentrate and watch him like a hawk etc.  When we switched to tube feeding, it was xxmls of formula xx times per day and he thrived.  Good luck with your decision, feel free to PM me if you have any questions.




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