Premature Baby?
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Category: Support
Forum Name: Parenting a child with special needs
Forum Description: A place for those parenting children with special needs to find support and share their thoughts
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=28412
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Topic: Premature Baby?
Posted By: Tastic
Subject: Premature Baby?
Date Posted: 28 August 2009 at 6:34pm
| Id love to hear from anyone who has had a premature baby - micro preemie |
Replies:
Posted By: mum2paris
Date Posted: 29 August 2009 at 12:19am
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hey there Trish, I hope you find someone to share experiences with. Failing that, I know of a great site and support group formed by one of the mums that came through our unit, and the ladies on there have all had micro-prems... a fair few have come through our unit but i do know that there are a few from other places too so I am sure that you could join up with them as well. :)
http://earlyarrivals.org.nz/ check it out if you like. ------------- Janine and her 2 cool chicks, Paris & Ayja 
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Posted By: KH25
Date Posted: 29 August 2009 at 8:28am
Janine - cool site! I looked for a NZ site when I had Ashleigh but there wasn't anything around. I'm sure it will be very useful to mums of prems 
Trish - I think you know my story by now lol, how is Aidan doing? ------------- Kelly, mum to DD, 19Jun06 (26wks 1lb15oz) DS1, 24Oct10 (32wks 4lb11oz) and DS2, 31Dec11 (32wks, 4lb11) http://lilypie.com"> 
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Posted By: meggls
Date Posted: 29 August 2009 at 10:25am
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Hi Trish,
My first baby was due 23 Oct 09, however decided to make a very early entrance at 28 weeks on 1 Aug, weighing 3lbs 1oz. We were told she was big for her gestation, although to us she was tiny. As Jade was born in Whangarei, we were flown to Auckland City Hospital within a few hours of her arriving, and she has been in level 3 NICU for the last 3 and a half weeks. A couple of days ago she was moved to level 2, and yesterday we were transferred back to Whangarei where we've been told she'll probably stay for another month. She is doing as well as can be expected, but to be honest I've found the move quite hard to deal with, I think in part because as she's our first baby, I have kind of associated being her mum with auckland hosp. and its staff - now all of a sudden places, routines and people are different, so I am trying to get used to that at the moment, which to be honest, I'm having a bit of a hard time dealing with. I know we're half way there to getting home now, she is 32 weeks today, but sometimes I wonder if its ever going to end! Each day is one more day closer to bringing her home, which we are thankful for, but sometimes the 'why did this happen to me?' train of thought plays over and over in my mind. Although I realise I'm not the only one this has happened to, sometimes it feels like it! Would also love to hear from anyone with any advice on anything really.. I'm not too sure what to expect once we are actually able to bring her home, as exciting as the prospect is. Megs
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Posted By: Tastic
Date Posted: 11 September 2009 at 12:35pm
opps forgeot this post 
Kelly - Aidan is doing great now! we had our pead appointment about 6 weeks ago and we are now on yearly visits which is a great thing
How is Ashleigh doing? I can't believe Aidan will be 3 in a couple of months 
Megs - Welcome to OB how is little Jade doing? 3lb 1 oz is a good weight at 28 weeks - my aidan was big for his gestation too 2lb 8oz at 26 weeks 5 days I constantly thought ' why me?' and I know how hard a road it can be in the NICU, we were in there for 115 days in total. when do they think Jade will be home? yay for being back to a hospital closer to home - she must be doing VERY well! big hug you can always PM me if you want to chat at anytime |
Posted By: NikkiB
Date Posted: 14 September 2009 at 9:24am
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I must go and check out that website!
My little one was born at 26 weeks, 1 day gestation, weighting 1.180kgs. In total, we spent just over 5 months in hospital. We also did 6 weeks in level 3 NICU Auckland. I found going back to Wgtn very difficult to deal with. In fact each hospital transfer we did, I found hard. How is everything going now Meggls? ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: meggls
Date Posted: 14 October 2009 at 3:36pm
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Hey thanks everyone,
Afer 8 1/2 weeks in hospital we were finally able to bring Jade home on 30 September. We consider ourselves very lucky to have been able to do so before she was full term (she was 36 weeks). The move to Whangarei Hosp. proved to be a bit harder for us than we anticipated - as I was unable to stay at the hospital with Jade until she was breastfeeling (which wasnt until the last 7 days she was in there) I had to travel an hour every morning to Whangarei, and an hour home each night which as you can imagine was a bit of an emotional roller coaster at times. The first few weeks I cried every time I had to leave her. I agree with you NikkiB, transferring hospitals was one of the hardest things we had to deal with. How is your little one now? We have all settled in well back at home, at the last visit from the outreach nurse she was 5lbs 12oz, so hopefully from here on out she'll keep gaining more weight consistently. Thank you Tastic, we are very proud of her. How old is your wee man now? |
Posted By: NikkiB
Date Posted: 14 October 2009 at 8:21pm
Great to hear you are home now meggls  Isn't it a great feeling to have that all behind you I will never take for granted having both of my boys home together.
My son is doing ok. He's still go many health issues, but he surprises me everyday on how far he has come
At least you are home in the warmer months too, hopefully there are a lot less bugs are. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Tastic
Date Posted: 25 October 2009 at 1:59pm
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Nikki - what a great weight at that gestation!
how is he doing now? I found the colder months awful as he caught every single bug around and it felt like Aidan was constantly sick Megs - sorry I didn't reply earlier but WOOHOO for Jade coming home, you must be so pleased and well done Jade for being a little fighter and making it home before her due date! that is awesome Aidan is doing great! he is turning 3 next month - 26th November and if you look at him you would never guess he was so early (he's not technically 3 till the 27th Feb though)
hope all our little fighters are doing well
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Posted By: NikkiB
Date Posted: 09 December 2009 at 8:03pm
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Tastic, sorry its taken me so long to reply. After spending so much time in hospital, I did everything I could to keep Jacob out of hospital during the winter months. So basically, we didn't go anywhere all winter and if we did, Jacob was under his storm cover. Thankfully, we only had to go to hospital twice since Jacob left in May
Happy belated 3rd birthday to Aidan ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: NikkiB
Date Posted: 31 March 2010 at 12:51pm
I thought I'd bump this thread again, just in case someone wants to chat in here 
Has anyone else seen the article in Little Treasures mag about prem babies? I thought it made for very interesting reading. ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Juzzo
Date Posted: 09 April 2010 at 8:36pm
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NikkiB, Not sure if you've heard of us or not but my son Harlow was born 19 Nov last year at 24 wks 6 days gestation weighing 725gms. I haven't read the Little treasures magazine, is that this months article?
We are definately struggling here. I love Harlow so much but I feel like a sinking ship sometimes. We managed to bring him home early March but we've had 3 re admissions already as he is such a poor feeder. He's on oxygen at home for growth, but he is so lethargic that he isn't allowed to leave the house just yet and I am sooooo worried about him picking up something as simple as a cold and with 3 older brothers and winter approaching I'm sure it's bound to happen at some point. I see you're WGTN based, where abouts are you? Tastic - did you ever get re-admitted during the cold/flu season with Aidan? ------------- http://lilypie.com"> 
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Posted By: Tastic
Date Posted: 09 April 2010 at 11:06pm
Nikki - no I didn't read it 
Justine - yes we did, and we ended up back on oxygen for almost a week while he 'got over it' then at home we just made sure the heater was on 24/7, we put a hottie in his bed a few minutes before he went down (removing it once he was down of course) just to keep his bed warm. one thing I wish I had brought were those baby legs, would of kept his wee legs warmer during a bum change etc bath time we kept to the day time and we bathed him in the lounge with the heater on I hope he is fine during the up coming season! |
Posted By: NikkiB
Date Posted: 10 April 2010 at 7:21am
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H Juzzo. Wow, Harlow was early!!!
The story is in this month's article. I thought it was very interesting and it will give people a bit of insight to what we all have been through. I totally understand your fears. We are approaching our second winter now and I'm still paranoid that we'll end up back in hospital again. Jacob came home in June last year, we spent (more or less) the whole winter at home. Jacob was also on home oxygen because of his chronic lung disease. We were admitted twice to hospital last winter. I'm a little bit luckier I guess, my 2 1/2 year old isn't at kindy yet, so isn't bringing home any bugs. We make people stay away if they are sick and whenever we go out in a croud, we keep Jacob under his storm cover in his pram. All you can really do is keep him warm, well rested and away from as many bugs as you can. I'm in Lower Hutt, where abouts are you? ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Juzzo
Date Posted: 10 April 2010 at 12:54pm
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Thanks Tastic, what are baby legs????? I haven't heard of them before. How on earth did you afford to have the heater running 24hrs a day all through winter?! Are you feeling better today?
NikkiB - I'll have to get a copy and have a wee read. Do you venture out at all???? I think I"ll go insane soon! NICU have us housebound for now due to low energy levels and social welfare are trying to figure out if we're eligible for any kind of carer assistance as I have a 7, 4 and 2 year old so we have lots of school/kindy runs to do. We're in Aotea, near Papakowhai, do you know where that is? Is Jacob still on oxygen? How bad was it when you were re-admitted over winter? Sorry, lots of questions ladies, thanks for the info tho! ------------- http://lilypie.com">
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Posted By: Juzzo
Date Posted: 10 April 2010 at 1:22pm
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Oh one more question, and I can't remember if you've told me this already Tastic, but did either of you end up tube feeding at home? If so, how long for? ------------- http://lilypie.com">
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Posted By: NikkiB
Date Posted: 10 April 2010 at 2:19pm
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Yep, I know the area where you live. We don't really get out much, with sleeping times and feeding times being all over the place.
Jacob isn't on oxygen most of the time now but I still carry an oxygen cylinder and his saturation monitor around with us. I'm going to hold onto his oxygen for as long as I can, as I know he'll need it if he catches a cold.
I hated being admitted to hospital. Jacob has some other medical problems and I'd find they would freak and admit us straight away. I found it so difficult because we had already spent 5 months in hospital and I missed my other son so much. Also, finding child care for my other son was a nightmare and putting him into daycare just wasn't an option for us. Since June, we have been eligible for respite care. We got 52 days allowed from June 09 to June 10, which is great, but we had to find someone who could look after Jacob for us. I'm very lucky, I've got a nurse who looks after Jacob a morning a fortnight - gives me time to spend with my oldest son and run some errands. The social worker at Hutt Hospital organsied for us to be assessed for respite care. Jacob has always been tube feed and still is. Mind you, in the last 3 weeks he has decided to finally eat!!! Just little amounts, but at least we now know that he can eat ------------- A very lucky mummy to two gorgeous boys: RB 3/10/2008 JB 29/12/2009 |
Posted By: Juzzo
Date Posted: 10 April 2010 at 2:32pm
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My gosh NikkiB, that sounds rather difficult. Yay to the eating! I can see why that would be such an emormous hurdle! Does he get his entire feed through his tube or did you try bottle/breastfeeding? Sorry to ask such a difficult question but do you feel like it's affected your bond with him?
We initially came home tube feeding but we were re-admitted within 20hrs because Harlow picked up a virus and at that point I said I didn't want to tube feed at home. So they put him on a lower amount of EBM and added Duocal and that has helped but he's now starting to run out of steam again. The Homecare nurse has said that an NGT is the only option next. I'm so reluctant to tube feed as I feel that my bond with him may not be the same. Thank goodness you get respite care, how does your eldest son cope? ------------- http://lilypie.com">
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Posted By: Raspberryjam
Date Posted: 10 April 2010 at 3:20pm
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Hi, Im lurking, from the heart kids thread..
Just wanted to say Juzzo I did half and half as Milla didnt have the energy to take a full feed from me and we had to fatten her up super quick - duocal made her sick too - we had and still have a really strong bond - She breastfed (and was topped up )- mainly for comfort til 4 months then tube and bottle for another month then bottle only after that, except for a week or so while we were back in hospital. Maybe you could offer him the bottle then top him up or offer him the breast while you tube feed him?A few mums on our ward did it like that, although there babies were a good size, its a bit harder when there isnt a lot of baby to hang on to - as you will know You guys are doing so well , Im sure little Harlow knows he has a very special Mummy ------------- http://lilypie.com] 
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Posted By: Juzzo
Date Posted: 10 April 2010 at 3:34pm
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Thanks Raspberryjam, good to hear of others having to do NGT's. He's currently on bottles, I've got to ring Homecare on Monday so we'll see what happens but I suspect that's the road we're going to have to head down. Does Milla have a heart condition and that's why she didn't have the energy? ------------- http://lilypie.com">
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Posted By: NikkiB
Date Posted: 10 April 2010 at 4:24pm
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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 |
Posted By: Raspberryjam
Date Posted: 10 April 2010 at 4:47pm
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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 ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 10 April 2010 at 4:54pm
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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: RB 3/10/2008 JB 29/12/2009 |
Posted By: Juzzo
Date Posted: 10 April 2010 at 4:57pm
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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. ------------- http://lilypie.com">
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Posted By: Raspberryjam
Date Posted: 10 April 2010 at 5:13pm
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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!! ------------- http://lilypie.com]
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Posted By: NikkiB
Date Posted: 10 April 2010 at 7:12pm
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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: RB 3/10/2008 JB 29/12/2009 |
Posted By: Tastic
Date Posted: 11 April 2010 at 12:53am
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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? |
Posted By: Tastic
Date Posted: 11 April 2010 at 12:55am
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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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Posted By: Juzzo
Date Posted: 11 April 2010 at 10:29am
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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. ------------- http://lilypie.com">
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Posted By: Raspberryjam
Date Posted: 11 April 2010 at 10:40am
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------------- http://lilypie.com]
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Tastic wrote:Posted By: Tastic
Date Posted: 11 April 2010 at 10:50am
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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 |
Posted By: Juzzo
Date Posted: 11 April 2010 at 12:57pm
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Wow! That IS cheap! I'll ask again - thanks! ------------- http://lilypie.com">
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Posted By: Tastic
Date Posted: 11 April 2010 at 1:08pm
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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! |
Posted By: Raspberryjam
Date Posted: 11 April 2010 at 6:14pm
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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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