Feeding Issues with Premmie [Archive] - Bub Hub Pregnancy & Parenting Forum

immy

13-08-2006, 18:54

My little princess was born at 26 weeks weighing 550grams. On a ventilator for 8 weeks then CPAP then had steriods to get her onto low flow oxygen. She is now home! Born 22/2/06 not due until 29/5/06. Therefore nearly 6 months old corrected about 10 weeks.
Well the problem with feeding began just a few weeks ago I suppose she is terrified of the bottle. She has reflux and gags also. I have been to the local doctor the paediatrician and also now the feeding clinic at the Childrens Hospital! The main problem is my little one is terrified of the bottle. I think she knows she is likely to throw up. We have tried Zantac and E-Mycin and nothing works. Everyone seems to wipe their hands of this and pass it onto someone else but we are getting nowhere.
Anyone have some advice or similar issues with their premmie? Love to hear your responses? Is this normal???

InSaneOne

13-08-2006, 19:05

you could try using a really small slow teat one of the ones that resemble a breast would be better (i think that there was a thread about the new design a while ago) and just give her really little feeds every hour or so to minimise the chance of throwing up.

immy

13-08-2006, 19:16

Thanks for the advice. Been using pigeon brand then also chicco. Chicco seems to be the best but the slow one is not working as she sucks for up to an hour and gets exhausted and only has say 40 mls. She should be having around 100mls every 4 hours. She is also on oxygen so she doesn't need to get more tired than necessary. The varied flow teat she uses now she sucks then swallows and is happy but the reflux follows.
The main issue we are experiencing is she terrified before she even starts to suck on the bottle this can take a while but once she gets going she is okay. So as you can see I am lost.............. Waiting for a call from Karitane but heard nothing yet don't know what to do?

sopolicha

13-08-2006, 19:21

A close friend of mine had a baby with really severe food intolerance's. Couldn't tolerate breast milk or anything else at the time. It got to the stage where her whole digestive tract was burnt and bleeding.

Poor baby also got to the point where she would flat out refuse the bottle, they Doctors treating her thought it was because she associated the bottle with pain. Anyway, syringe feeding worked for a while, and I know that on the ABA website they used to sell a Medala bottle that didn't have a teat it had a mouth a bit like a spoon.

http://www.mothersdirect.com.au/prod52.htm

Might be worth a shot.

onabreak

13-08-2006, 19:42

My daughter was born at 29 weeks and is now 21mths old. I remember when she first came home that I couldn't breastfeed her cause I wasn't producing enough breastmilk for her so we started her on formula. I don't recall her being affraid of the bottle but she did end up with bad reflux. We found an anti reflux formula by S26 and as soon as she started having that the reflux went away. The formual is thicker than normal but it was great. If you are trying her on formula give that one ago I swear by it. It did make her a bit constipated but we applied a few drops of a baby laxative I think it was coloxl (sp?).

But if all else fails give your local hospital or doctor a call and keep hasselling them until someone does help you.

bekkyboo

13-08-2006, 20:07

tommy tippie has the cross teat that is supposed to be closest to the breast - its a variable flow, only comes when bubba sucks.

My DS has severe reflux, he is on the s26 ar as well (the reflux one) i also swear by it for his reflux. but the tommy tippie bottles dont work with it and he has to suck too hard for anything - he was born at 37 weeks, so i dont think that those teats would be any good for your baby, as she would have to suck to hard.

Ill have a chat to my SIL, her eldest was premmie and he had to go straight on the bottle...

immy

14-08-2006, 07:47

Rell

14-08-2006, 09:22

You poor thing what a stressful time.:hugs:
Neither of my kids were premmies but DS has a blockage at the bottom of his stomach (causing him to projectile vomit) which was fixed by surgery at 3weeks old. He then developed very bad reflux and as a result would scream at the sight of his bottle. He was well over 6mths before I could get him to drink 100ml at a time. Feeds were such a horrible experiance and it wasn't until he was 10mth that he would enjoy his milk. Somehow he still managed to put on weight (only minimal) so we would never force the feeding issue with him as it would make him worse.
I think seeking a second opinion from a different pead or the hospital is a good idea as there are other medications that can be given for reflux.

Hope you get some answers and your little girl starts feeding better soon:hugs:

immy

15-08-2006, 09:23

Thanks for everyones advice and/or support. It's nice to know I am not entirely alone.

Well I went off to the children's hospital yesterday and we were admitted. Even though a different hospital our normal paed. was called.

The attention and care last night was less than satisfactory and I am totally suprised considering this is the Syd Childrens Hospital. I saw a member of the feeding clinic as I called her and she basically said yes there must be more to it and put it back in the hands of my paed.
The nurses weren't interested in her bottle time nor did they even know she threw up and said no-one besides the normal register would be seeing me until tomorrow mind you I arrived at the hospital at lunchtime.

My little one screamed in pain for hours on end and nurses walked in and out and didn't care. To top it off I was going to stay the night with her and they could only offer me an upright hard chair to sit on and I have hardly slept in days but that's beside the point I would have stayed standing for days if something was being done for my baby.

In the end I thought enoughs enough I am going home where both of us will be more comfortable and seeing our paed this morning. The only difference here is that I would have seen him today but in the hospital.
Of course they were not happy I was leaving but the paed had no problems at all with this and was happy to see me today as he knows me very well. I have helped care in hospital and cared for my child everyday since she was born and she comes first.

We have had many experiences with hospitals but this was definetly the worst. I have to commend Sutherland Hospital only small but exceptional in comparison.

Wish me luck I am not leaving the paed office untill something is done once and for all. If I have to sleep on his hard chair in his office I will. Ha! ha!:banghead:

Rell

15-08-2006, 14:34

Good luck today
Hopefully you will get some answers and a happy little girl soon

Rell

15-08-2006, 19:25

How did you go at the peads today?
Hope things start improving for you both

immy

16-08-2006, 13:58

Hi! Paed gave me Locsec to try which will help with relux and the pain from the reflux. Still have problems with her getting to take the bottle she is terrified so I am going to try the pigeon teat again maybe she might think different teat so this might not hurt me, we'll see, her feed is due in half and hour. I am also seeing my local doctor to get him to call Karitane and try and get us in there for a few days to get things sorted.
Thanks for the support it's a great comfort!!:yes:

Rell

17-08-2006, 12:50

:fingerscrossed: The losec helps. Good luck getting into Karitane hopefully they will be able to help her too. Is she still putting on weight?

immy

17-08-2006, 14:42

Hi Rell! Still waiting to hear about Karitane. 2 weeks ago Imogen weighed 3.7kgs and today she weighs 3.94kgs so considering I am very suprised. I think if things don't improve too much she won't continue to put weight on though. The last couple of feeds with the pigeon teat have been pretty good but she did throw up half the bottle but at least I am getting her to take it. She is still very upset when I offer the bottle to her and doesn't want it but after a while she starts sucking so this is an improvement on the last few days. I'll keep you posted!

missynik

18-08-2006, 09:21

Hi :wave: Pigeon have a product called an anti gas milk flow regulator (anti colic disc) they are now in all their bottles that are new on the market. You are able to place the disc into any teat that isnt wide neck. The disc slows down the feed and allows it to only drip into the teat. I have used these with both my girls.

And now pregnant with number three.(They expect not to last to 30 weeks) I love to hear your stories and i feel it is getting me prepared.:shame:

Hope this helps if you are not able to find them in the shops please pm me as my chemist is able to order them in as i have now stocked up my cupboards.

Good luck:fingerscrossed:

immy

19-08-2006, 11:56

Hi Missynik,
Thanks for the advice on pigeon I'll have a look.
As for not lasting until 30 weeks I know alot about having a premmie baby and one that was very sick due to my recent experience. How far are you now and what are they talking? 30 weeks 28 weeks? What size is the baby now from ultrasound?
The longer you go the better of course. I think around 24 or earlier even to 28ish weeks often the baby might have to be ventilated. The closer you get to 30 weeks the more chance the lungs are stronger and the baby might go straight onto CPAP.
I had steriods while pregnant in hospital as I had severe preclampsia, when they finally decided to do emergency which was within 10 minutes it was because my blood pressue rose to 280 on 120 which I was very lucky not to die or have a stroke.
Anyhow we went through it all from operation on her heart at a few days old to numerous infections then having to use steriods on her to get her off ventilation and then a while on CPAP. She now has chronic lung disease but she will grow out of and is on 24 hour a day oxygen. She weighed 550 grams at birth and dropped to 475grams after birth.
I have met alot of people in the hospital who had similar experiences to me and we help each other out with advice and support.
Anything you want to ask feel free. I know how you must be feeling. I'm wishing you all the best.:fingerscrossed:
Let me know what you

missynik

20-08-2006, 12:44

Please let me know as i have a few new disc put away i am happy to send you.

I am now 14wk3day They have indicated as soon as bub is big enough they will take the OB would like to get to 30 wks. They don't say much.

I have now had 5 scans due to bleeding most of the time.

Blood preassure is now medicated due to be constanlty high.Normally 165/110

I have a Bi-cornate uterus that just will not hold the distance.We have planned for C-section.

Having a RH- Blood causes all problems.

I live in a small town north west of brisbane and there is no great hosptial to cope nearby so they are looking to send me to Royal Womens in Brisbane. I know nothing about them. And its a long way from home for Hubby and kids.

Thank you so much for you guidence and best wishes:wave:

immy

20-08-2006, 16:14

Missynik, I can imagine how you are feeling as I was having the same thoughts not so long ago. Try not to worry. 30 weeks is not so bad. Rest as much as possible. If possible even though you are a bit away a trip to the hospital they are talking about to have a look at their neonatal intensive care ward so you know what to expect. These days babies are born very early and no problems. My little girl as mentioned was born at 26 weeks but stopped growing around 22-24 weeks. All that is wrong with her now is her lungs which she will grow out of. Otherwise just a few problems with feeding etc but no probs with hearing or eyes brain etc so don't worry.
Make the doctors tell you more about what to expect. Each week or even day longer the better. If your baby is large even better it will be stronger. The more informed you are the better. I know I was shocked but stay positive and focussed it's really important. You may feel like no-one understands what you are going through but don't worry this happens so often it's scary. Technology is amazing these days!!!!! Any questions you think of just ask. There is too much I can tell you at this point of time but I know from what I saw that 30 weeks is a lot better than 22-28 weeks. Take care!!!!!!!:yes:
P.S - Sorry for the long reply.

Rell

25-08-2006, 13:47

how is your litle girl going
Hope she is improving

TallPoppy

27-08-2006, 12:39

Hi, I am a midwife and neonatal nurse currently on maternity leave with baby no. 4. I would like to offer you any help, advice and support that I can. If you have a question please ask because if I don't know the answer I will find someone who does! I am sorry that you are going thru this.:( It is enough that you have a babe with special needs to look after without having the hassle of dealing with below average hospital staff as well!

You already know alot about your baby's needs ie slow teat etc. and I am presuming she sleeps in an elevated position? Unfortunately babes do get frightened when they associate feeding with pain and discomfort and you can only do your best to calm them. I can only suggest (and you are probably doing this anyway) that you take the bottle slowly and gently to her mouth. Tickle her lips alittle and show her that its not so scarey. Just don't force it... I'm sure you are not anyway...

I have had a bit to do with this type of problem in hospital and apart from medication (which I will not advise on as your paed is managing this) in hospital we give the feed slowly with frequent breaks, babe in an elevated or upright postion and remaining upright for quite a while after the feed. Stop the feed if the babe starts coughing, gagging or squirming alot. Try to distract her if she starts to cough or gag ie stand up and walk around showing her things and talking. Then go back to the feed once she has settled. Babes can get into a bit of a gagging habit and this can help break that. Be sure to burp frequently during the feed.

Its important to remember that tube fed babes also get reflux and will vomit so this is not necessarily the answer. Its the volume of feed in the tum that sets them off. Have you tried 3 hourly feeds with the smaller volume? I wouldn't suggest waking your baby more often as they do get so tired.:sleeping:

I know its hard when they get upset at the sight of a bottle. This WILL get better in time, as her discomfort eases she WILL enjoy feed time more.

I wish you all the best and hope things get easier for you real soon. It sounds like you are doing a GREAT job.;)

blessings,
Jennifer.

immy

30-08-2006, 14:28

Jennifier,
Wow! Thankyou! Yes the baby sleeps elevated. I have also tried 3 hourly feeds. The feeding clinic and taught me techiques to use to tickle around the mouth etc. Nothing really works.
The paed has increased the locsec so I am trying that.
I have also now decided to wrap my little one up when I feed her this is helping a little.
I am now going to Karitane for a day stay on 15th Sept. I mentioned to them that everyone seems to be passing the buck and she said "well I hate to tell you the bad news but I don't know what help we can be and have I been referred to Tressillan". I mentioned no and thats when she suggested the day stay so fingers crossed.

I'm glad to hear from you it's really nice to get the advice. If this doesn't work with Karitane I also have now been given a midwife/nurse's number who actually will come to my home by a colleague of mine.

If you have any more suggestions let me know? I'll try anything.:)

TallPoppy

18-09-2006, 13:51

Hi immy,
How did your day stay go?
Jennifer.

Bee_03

26-09-2006, 09:00

Many thanks for both the replies. I had been using S26 AR but she was arching her back in unbearable pain. I then tried Karicare HA AR which is for sensitive immune systems and for reflux. She likes this but it doesn't help with the reflux well anymore than the S26 AR. As for the teat it sounds like it is worth a try.
However you are right I've got to the point this morning with no sleep again I am going back to the hospital and demand they do something. If she has to be tube feed for feeds so be it so long as she is not as upset as she is. Having a bottle it supposed to be a nice relaxing experience for her. I just wish I was able to produce more milk earlier but only 8 mls in total.
Thanks again wish me luck.:wave:
Hello:wave: you have probably heard about it but my little man was put on a Haberman Feeder...a special bottle designed and used for premmies and bubs with a cleft palate...My little munchkin was born at 28weeks but was only the development of a 25weeker and weighed only 704gm....after 101days in hospital (just before discharge his speechie put him on this special bottle which you can get from some chemists it costs around $52 but I know you say that's alot but without it he probably would have come home with a NGT he is now able to drink from a normal teat:smiliedance: finally because the Habermann taught him how to suck. (just couldn't latch on which was a same but hey) nothing is what we think when we have a premmie is it. Zac is now 9months old or 6months corrected averages about 150mls a bottle and has been on solids (just one feed a day so his little tummy can get used to digesting. We also found his first tooth yesterday just poking through which was very exciting!.....oh before I go I noticed I think you or someone else uses S26 not to be rude if its working but we did hear that it is the biggest cause of wind pain in bubs (which I find so weird that it is the only formula in hospitals :banghead: ) but our paed. and nurses all told us to stay clear of it. We were recommended to using NAN HA gold 1 its easy to digest for little tummies...but don't worry too much colic just seems to disappear by itself.....Zac used to go completly ridged and scream...now its just to get his own way well I had better go but if you or anyone needs more info I would love to hear from more mummies with prems take care B

immy

26-09-2006, 13:10

Well my little one hasn't really improved much. We are using Karicare HA AR and she definetly has no problem sucking when she choses to. WE went to Karitane but unfortunately they could not offer me any solutions. Everything I am doing is all that can be suggested. Unfortunately they advised this is just going to take time. The only suggestion was to syringe milk into her mouth when she is not having enough but this doesn't work as she gags and then proceeds to throw it up. She is now on Poly-joule to assist with weight gain and she has gained nothing in 4 weeks.
We are back to the Paed. on Tuesday and I am going to ask about nasal gastric tube again as I don't want her to get dehydrated especially coming up to summer. Not the answer but a short term solution to ensure she gets what she needs. They don't want to do this as they say it's not the answer but what do you do. When she decides she will drink the bottle she goes great and has a strong suck but the problem is she doesn't want it. So back to the drawing board.
Thanks for the continued suggestions and feedback. Unfortunately her problem is all behavioural and looks like it might take sometime.

Bee_03

26-09-2006, 14:49

Hi just me again when you go to Paed. please ask them to either look into Habermann Feeder as I said you can buy them yourself from good chemists or ask to be refered to a speechie....Zac would crack a narnie if he wasn't tube feed he got dependant on the tube doing all the work and would fall asleep, crack a tantie anything not to feed but this bottle helped really and with the specially designed teat you can very gently squeeze it into their mouth to get them to take it. It used to take us an hour or more to get 50ml into him so I know your concerns .... but hey no harm in trying my fingers are crossed for you .... let me know how you get on

Rell

26-09-2006, 19:31

I am so sorry to hear that things haven't improved. Have you checked out the on line feeding expert on here. If they aren't able to help on line they may be able to put you in contact with someone that can help.

Good luck :fingerscrossed: that things start to turn around soon

TallPoppy

27-09-2006, 14:20

Hi immy,
I'm sorry Karitane couldn't offer you any further suggestions. You are absolutely right that it is a behavioural issue and finding a solution is sooo dificult. I'm glad that when she does decide to drink that she does without too much trouble, that is really encouraging!! She just needs to have more 'good feeds' and less of the bad.... it really is a matter of time. I think routine also plays a big part. You may notice that changes, however small, really rock her world?

Keep on keeping on. I wish you lots of patience and luck, and just keep LOVING her. This will get better, I know a day can seem like a year, but there is light at the end of that long tunnel!

Don't forget that kids are always out to make liars of their parents and what didn't work before may work now! It may be worth revisiting some old techniques or equipment if you are having a really rough time.

Does the children's hospital near you have an outpatients feeding/speech therapy clinic? Sometimes Dr's don't refer to these services because they don't beleive they are of value but speaking from experience THEY REALLY ARE!

All the best, I'll keep checking in here to see how you are going so keep posting!

Jennifer.

immy

30-09-2006, 11:01

Hi Guys,
I went out and bought the Haberman Feeder to try. I haven't used it as yet just bought it today. My little girl spent the last 3 days in Sutherland Hospital because of her feeding. She is now getting whatever she doesn't finish in the bottle in the nasal gastric tube. They have taught me to put the tube down and look after this myself at home, which is fine with me.
We are off to see the specialists at the Childrens Hospital in the Gastroentology Clinic to investigate what is going on.
The paed. gave us Elecare to try which I did this morning but she threw up 7 times and large volumes so I am very hesitant to try it again.
At least I know she is now getting the right amount of volumes of formula now which is a huge relief to me.
I'll let you know how the Haberman Feeder goes.:fingerscrossed:

Bee_03

01-10-2006, 13:54

Just a quickie to say Hi and our fingers and toes are all crossed I hope the Haberman Feeder works for you both read the enclosed instructions it has diagrams to show you slow, medium or fast flow the best thing about this bottle is it doesn't flow unless bub wants the milk and you can gentle squeeze to give them abit of a hand....Zac didn't take to it straight away but now he is a eating machine....but it did take time so hang in there we hope it helps...and for anyone else having problems if you need any help dont hessitate to get in touch more than happy to help anytime...
ps before I forget you probably already know about this but P.I.P.A (premmie infant parents association) (has website under pipa too) they are a great help with mums who have been there too are having a bbq at New Farm Park on October 22nd its a sunday from 10am - 2pm I noticed you are from Brissie we are on the Sunshine Coast but will be coming down to catch up with a whole bunch of great families we met at RBWH while Zac was there for three months if you are interested I will find out more info it sounds great....to also met others and hear their stories and know we are not alone take care B :rolleyes:

immy

02-10-2006, 14:56

Hi Bee thanks for the info on PIPA I didn't know about them so I will have a look. I actually live in Sydney not QLD. Anyhow I am going to try the Haberman Feeder today so I will let you know how it goes. Talk to you soon.:wave:

Bee_03

02-10-2006, 17:05

:thumbsup: you are so very welcome...on both PIPA and Haberman....sorry I thought you lived in Brissie its a pity cos we could have caught up....I hope your little one is getting better and as I said any help you need with bottle let me know. And PIPA is great...they are able to help with so much premmie help cos I found normal ( I hate that term but you know what I mean...term bubs) parent groups have no idea what we have all been through with prems and I find it comforting to hear from people who have been there and don't make me feel like an alien will talk to you soon....I have a hotmail account if you ever would like to chat....take care Bee :ecomcity:

immy

05-10-2006, 15:58

Hi Bee,
Just wanted to let you know I tried the Haberman Feeder. Unfortunately no success. We seem to have gone from bad to worse she won't even suck at all just starts crying. I'll see what the specialists say Tuesday and go from there I suppose. Thanks again.:yes:

Rell

05-10-2006, 17:50

Good luck on Tuesday :fingerscrossed: you get some answers

Bee_03

05-10-2006, 17:56

:fingerscrossed: Hi Immy,
Sorry to hear that...but Zac also hated it at first it took him a couple of weeks to get the hang of it so please don't dispear....after he was discharged (after 101days in hospital....) it still took weeks....he used to feed for around an hour or more and we were lucky to get 30-50mls into him....as you could imagine I was a stress case but we persisted and eventually we saw results. Take Haberman or instructions to Doctor and see what they recommend as I said I had never heard of Haberman before our speechie told us about it.....sorry again honey . Please keep me posted oh yeah before I forget www.pipa.org.au (http://www.pipa.org.au) is premmie bub site if you have any questions contact them this is their specialty....hope that helps.....they are wonderful people.....take care chat soon B...:hugs:

immy

13-10-2006, 17:08

kiwibird27

27-12-2006, 22:56

Hi Bee,
We have been to specialists now at the Childrens Hospital and what a suprise passed it back to my paed. Anyhow my little one is having a barium meal test Monday to see what's going on. They think everything is related to the reflux and she is frightened to take the bottle. I am not to even try the bottle for a while until we have more progress with the reflux then I have to slowly introduce it again so fingers crossed. Anyhow for the moment with the NGT she is happier so we'll just go from there. Thanks for all your help and advice. Definetly not giving up on the Haberman feeder. Anyhow gotta go. Talk soon.:wave:

I have pmed you and have now found this thread!!!! Have you tried the Traz cross cut teat - the speech therapist at Randwick gave it to me and it's the only teat my baby would take - it's really soft and only gives out milk when she sucks. Think your right about being frightened - you should get a referall to a speech therapist who can help you!!! Good luck

immy

28-12-2006, 11:44

Hi haven't tried that particular teat but worth a try I suppose. She won't take a dummy either but will eat a little bit of solids.
We did see a speech at syd kids but initially she had a very good suck it's just she stopped altogether. The speechy there referred us back into the hands of our paed.??? To hard basket I suppose. Very frustrating.

kiwibird27

12-02-2007, 15:08

Hey, How is the feeding going?????

immy

16-02-2007, 14:40

Hi sorry it's been a while but I went back to fulltime work on 29th January, very hard when you are a single mum.

Well we are back seeing the Feeding clinic at Sydney Children's. She still won't take a bottle but the solids are improving and you'll never guess what??!!! Reflux seems to be disappearing, yippeee!! Only little ones now and only every few days.
We are seeing another Gastro at Sydney Children's also.

Thanks everyone for your support. I can't wait to fatten my little girl up! What a year it's been she turns 1 yr old 22nd Feb, what a little miracle.
:yelclap: