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NikkiB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NikkiB Quote  Post ReplyReply Direct Link To This Post Posted: 10 April 2010 at 4:24pm
Juzzo, I use to get really upset because I wasn't bonding with Jacob. It took a good 3 months (after he got home) before I really felt like I was bonding with him and all that time I felt like the worst mother ever (I bonded straight away with my first son). I tried BFing but Jacob didn't have the energy (with his heart and chronic lung), so he was offered the bottle but was very orally sensitive (probably because of all the tubes etc he's had in his mouth and doctors forcing a dummy in his mouth to keep him from crying while they were examining him). Jacob had a gag reflex at his lips!!!! So he is 100% tube feed. Instead of trying to get him to drink from his cup, we are focusing on feeding him solids. We have managed to push the gag reflex back, but he is still very sensitive to lumps of food in his mouth.

If the NGT is going to keep Harlow out of hospital because of weight gain, then I'd do it. Jacob is also on Duocal and seems fine with it (he's on maximum dose). What RJ suggested seems like a really good idea. Have you got a Speech Language Therapist working with you?
A very lucky mummy to two gorgeous boys:
RB 3/10/2008
JB 29/12/2009
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Raspberryjam View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Raspberryjam Quote  Post ReplyReply Direct Link To This Post Posted: 10 April 2010 at 4:47pm
Yip juzzo she does have a heart defect, and was 2.72 kgs born so a wee dot for full term. And first open heart at 4 weeks. Had Harlows duct closed?

Nikki, funny you mention about Lumpy food, I never put the two together but I couldnt get Milla to eat solids for ages especially lumpy stuff , and even now she is very fussy with textures.
I find if milla is watching the wiggles or something I can feed her much easier
Im wondering how in the world we could possibly cut milk out form 2 as plunket suggest
Fab that oxygen is still off

I have seen a contraption that tube feeds into a babes mouth while they are breastfeeding - I dont know alot about it but Juzzo maybe if your willing to try some alternatives homecare could help with that

I hated tube feeding with a vengence so hope you have some other options , there re positives though - like feeding while they are asleep!! and knowing they have had enough but i still hated it
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NikkiB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NikkiB Quote  Post ReplyReply Direct Link To This Post Posted: 10 April 2010 at 4:54pm
RJ, I HATE tube feeding too....but when its the only option......lord knows I've spent hours and hours trying to get Jacob to eat and drink.

I wouldn't cut out Millas milk when she reaches two. My oldest son is still getting milk, either by bottle or cup and I don't see any negatives in giving him milk.

Gosh, MIlla was little when born, she looks so good now, hard to believe she has had such a rough start to life.
A very lucky mummy to two gorgeous boys:
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JB 29/12/2009
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Juzzo Quote  Post ReplyReply Direct Link To This Post Posted: 10 April 2010 at 4:57pm
Harlows had 6 doses of the meds to close it and it's definately helped It's still a tiny bit open but they're not overly concerned about it right now.

Yes, we do have an SLT working with us (she's pushing tube feeding) altho what she says and what the homecare and consultants say are very, very different. Gosh Nikki, that must have been really hard tube feeding all the time. You're amazing!

RJ I have seen that funny contraption but I'm no longer expressing, basically gave that up at 13 weeks. Breastfeeding was never going to work. He's still on my frozen EBM stores via bottle for now and he'll eventually go onto formula. Like you, I absolutely loathe tube feeding but it doesn't look like there's going to be too many alternatives now.    I'm hoping it won't be for long.
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Raspberryjam View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Raspberryjam Quote  Post ReplyReply Direct Link To This Post Posted: 10 April 2010 at 5:13pm
Totally understand why you would give up, its hard work expressing.
Fingers crossed it wont be for long

Yeah I know NIkki,and hard to believe she is so sick - but we are average now!! in the 50th percentile
I dont know how you cope - i know you dont have a choice, but I just know what a bloody hard slog you put in - supermum!
I should kick myself everytime I think god Im over carrying this baby - I certainly dont want to be back there - any sort of care is not an option this time I want an easy babe!!
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NikkiB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NikkiB Quote  Post ReplyReply Direct Link To This Post Posted: 10 April 2010 at 7:12pm
It is extremely difficult expressing, I expressed for 6 months, looking back, I don't know how I did it.

You deserve to have an easy babe this time RJ.

Thanks for your words of encouragement guys. Like you said RJ, you don't really have a choice, you just get on and do it.

Juzzo, just remember, whatever choice you make, it will be the best choice for Harlow. Sounds like you're doing a fantastic job - its certainly not easy have a premmie or a sick baby
A very lucky mummy to two gorgeous boys:
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Tastic View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tastic Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2010 at 12:53am
Justine - these are baby legs: http://www.trademe.co.nz/Baby-gear/Clothing/Pants-overalls/912-months/auction-282520881.htm

we got a phone call on day 101 asking if we wanted aidan home the next day on oxygen and feeding tube, I was shocked and said yes sure, however when I got to the hospital I was approached by his ped who said the person who rang and asked me that had no right and it isn't her place to ask or say that! (it was one of his nurses who rang me)
his pead said since she makes all the decisions in reguards to Aidan's care he will not be leaving the hospital on oxygen or feeding tube, so after another 2 long weeks we came home, no oxygen and feeding every 2 hours some ridiculous amount of 40ml or 50ml - couldn't get a drop more into him. a week later he kept setting his aponiea monitor off and turning blue so was re admitted for another week and he was put on oxygen.
then yeah another week a couple o months later when he got sick. but nothing since (apart from when he was in for his operations)

RJ what was wrong with her heart for her to need surgery?

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tastic Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2010 at 12:55am
ohh and justine - the baby legs/leg warmers are worn basically from the top of there thigh to there feet so they are covering there legs when you change there bums, keeping them nice and warm and just exposing the places needed
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Juzzo Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2010 at 10:29am
Thanks for that Tastic, will investigate those leg warmers!

I've said I don't want him at home tube feeding but it looks like it's going to be quite some time before he gets his act together and it appers to be the only long term solution right now. It's just so frustrating. I know I'm incredibly lucky as he's healthy in every other way, I just have to keep reminding myself.
Trish, what formula did you put Aidan onto?   I know we've discussed the low birth weight one before but the paeds drs here won't prescribe it as he's aparently too old for it????   So they've recommended he go onto either Karicare AR or Karicare Gold as they have the most calories.
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Raspberryjam View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Raspberryjam Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2010 at 10:40am
Originally posted by Tastic Tastic wrote:

RJ what was wrong with her heart for her to need surgery?



Think its probably just easier if you read about her in the heart kids thread - its only the second or third post Im happy to talk about it its just a rather large story
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Tastic View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tastic Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2010 at 10:50am
He was put onto the s26 low birthweight one and when that ran out we put him onto the normal s26 one which is the exact same but not as many calories etc in it. his pead change his dose to 1 scoop to 50mls not the 60mls that was on the tin, this way he worked out much the same as the low birth weight formula
the low birthweight we got till he was 6 months old on prescription so I don't think he is too old! you should ask again and get them to apply for it as if you get accepted the prescription is really cheap (we got like 24 tins for $1.00!) - the tins are half the 'normal' size though
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Juzzo View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Juzzo Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2010 at 12:57pm
Wow! That IS cheap!   I'll ask again - thanks!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tastic Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2010 at 1:08pm
no problem, I hope they give it to you!!!

Rj - poor girl! you have been through alot!

I thought Aidans heart valve 'problem' was big but I guess it wasn't that big in the end, compared to some of the lady's in that thread!
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Raspberryjam View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Raspberryjam Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2010 at 6:14pm
its relative Tastic, I think we had all had enough bad luck, to be honest its not a part of our everyday and its a long time since we had more than 2 days in hospital
Its hard to think we were ever there actually and there are soo many worse off than us

hehe, long time since I have been called girl, cute



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