Premature babies support group

jagiebaby,

my son is turning five this year...he went for childcare in 2009 when he was three plus...that means about 1 year 7 mths?...with law and order in school, they cant misbehave ahhaha..
 


<font color="119911">costa del sol</font>,
my boy has not started sch yet. think so...boy super active, never sit still. even during dinner,he also move ard. with him ard, we adult never peace when having dinner.

hopefully, when he entered preschool next yr, he will be well-behave and more discipline. cos now, he is super stubborn like bull, want mean want if not scream etc...last time, when he was one, he just knocked his head on floor when he was angry or 'buay siong' but we bo chap him and he dun dare liao. think he was doing purposely.

<font color="119911">Jagiebaby</font>,
my col has 4 kids, only his 2 boys developed speech much later. so he did not really seek help cos he said let natural take it course.

my boy also speech not gd and always talk in bb language. unlike his jie jie, speech develop faster.
 
afcai,

my son same....after gg to school,better but still he dares to show some of his pattern in sch to the teachers..but there kena controlled so slightly better and he doesnt dare anymore...but at the beginning he also lidat..also knocks his head on the floor .....i told the neo nat abt it , she said let him wear a helmet and then continue hahaha...lol...

now the sch says that my son is well behaved in sch but smtimes still insists on his way....what to do?i can only try to talk nicely to him to behave....

thk for your boy, maybe after some time his speech wld develop more....

same lah, i never get a gd meal outside as he cant sit still.......
 
my 2 cents worth... re speech, if u think (mommy's gut feel) think that intervention is required.. do go for assessment. But then I am someone that is pro-early intervention.

re active..ahaha.. my gal also super active. now she likes to run across the corridors of shoppping centers and run up and down escalators.. my lack of exercise means i cannot catch up with her...

afcai, ur long ago Q.. my gal is emergencny c sec cos i was bleeding..not that she was eager to come out :p
 
hello everyone,

Been really busy and din keep up with the post. Anyway, jus a short post here, need some help!

Does anyone know a good PD surgeon and Gastroenterologist? We are bringing Xavier back next week, and would like to review his case, as his constipation problem is really severe now. If anyone has recommendations (private or govn hospitals are fine), please let me know! Thanks.

David,

Is Danya's surgeon good?
 
<font color="119911">costa del sol</font>,
oic. haa..so funny, ask to wear helmet...anyway, we just ignore him and he just won't do that anymore. think they reacted this way is to seek for attention.


<font color="aa00aa">bloom</font>,
oic....

<font color="aa00aa">Jas</font>,
is it bec of the fm he is consuming? not suitable for him? give him more water to drink? a little bit of ribena (those that add in water one not packet) also help....
 
Hi afcai,

not as simple as we thought. Tried all methods, change FM, eat more veggie, fruits, oatmeal, water, did physio everyday...not helping. we are desperate now.
 
Hi Jas,

The surgeon who perform Danya ops is good. Her name is Dr. Ong LY. It will better if you call them for an appointment. A detail check is better to find out the cause of constipation. Gastroenterology number is 6294 4050
 
Jas,
do the doc have any advise when u bring Xavier to see them?

one of my neighbourhood mummy kid also have this problem. doc advise her to buy the friso dunno what to drink together with the fm. it helps the kid....
 
Hi everyone..I jus gave birth to my gal when she is 33wks 2 days.my waterbag bursts when
She is 29 wks 5 days.now she is in NiCu.she did not cry at birth.she is 2.155kg.now I m so worried abt her condition.
 
Hi Julbee74,

Welcome to our support group. Your gal has a good weight. Is there any other challenges which the DOC mention? I believe your gal will be home sweet home very soon.
 
julbee, your girl has a good weight. 2kg is actually the benchmark for premmies to be discharged. I was in the same situation with - PROM. I reckon you managed to keep her in for another 3 weeks before delivering her? Did doc give you steriod jabs? It will help mature the lungs. I think perhaps she needs observation before the doc can give you any conclusions? Update us, ya?
 
I kept her for 25 days before delivering.she relies on machines to help her breathe..y?!other than that they haf no issues with her..that fact alone I m very disappointed...
 
<font color="119911">julbee74</font>,
welcome to the thread. did the doc beat the bb bum after birth? I think mine have cos he just yelled 2 times and then followed by silence.

as for yr gar, her weight is considered good. most of our premiee are below 2kg.

did yr gar cry in between esp when she is hungry?
 
let's pray that the machines will be taken off her soon. Did doctors say anything about her lungs? When my boy was born, he did cry. However, it was later I realized (from his discharge form) that his lungs collasped and needed resucitation. Subsequently, a ventilator was inserted to help him breathe. I remembered it was for a few days. He went on to CPAP for a while. Is she your first child?
 
hello mummies, long time never check in. Quite a few episodes happened in between so got demoralised. Hope all of u and our little warriors all doing well and healthy.

For those of you who are new, my boy was born at 925g at 28wks. Stayed in NICU for 1 month and SCN 1 month, had 1 hernia op after discharge. As he was a VLBW baby, my main struggle has been with his weight. My boy is now 3yr 6 months and weighing still only 11kg. His weight has been stagnant over last year so we have been desperately trying to up it. Well, in the end after trying and trying, we decided to be referred to the endocrine dept for further investigation. He's had blood tests done and confirmed to be partially deficient in growth hormones. Will need further tests, including a MRI, to confirm some more things before he may get started on daily injections of growth hormones. SIGH.. big set back. But i'm not complaining because he is healthy and progressing fine otherwise.

I read that a few premies going for SPOT clinic? Can anyone share if it helps very much?

To be honest, i got very tired of all the silly calculations by the dieticians and all those recommendations that were not helpful for my case(with the exception of MCT, caloric powder which can easily dissolve into food) cos my boy is simply not interested in food! I stopped visiting the dietician when my boy was about 1.5 year old and decided to just go with the flow. I have always believed in eating normally, i.e. he shouldn't be given any especially "healthy" food (e.g. organic, salt-free) just becos he is a child and premie, as he will have to adjust to these later on anyway. To me, a little is fine, just don't overdo. He had major problems taking solids, because pple ard insist on giving him porridge. I insisted on giving solids no matter how long it took for him and how little he ate. I can still rememeber sitting next to his high chair for 1-1.5 hrs just to feed 10 spoons of rice... This arduous journey of introducing solid like rice and noodles started at about 2.5yo and til now he is only starting to like them and chew better. So, speaking from my own experience, i think for premies who have difficulty chewing, it's impt to expose them to as many opportunities to chew as possible. Nowadays, he still can't eat much solids at one go, but i realised he can eat quite frequently, so i split some meals into 2 feeding sessions and ply him with lots of "healthy snacks" in between. This seems to be working well, at least he is eating more and knows how to chew very well now.

Anyone got tips to get kids to eat more? I think i am already giving watever i can - pediasure, appeton, caloric powder...

After our last kite flying, were there any more mtgs? How about a makan chit chat session soon? Sengkang mummies? Got quite a few here rite?
happy.gif
PM me if keen k? feel free to give me ideas on the places and dates. I am terrible at setting dates and venues, but i can coordinate quite ok
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take care all!
 
xbliss, thanks for sharing. I am so sorry to hear about the partial deficient in growth hormones. It must be quite demoralising.... I can understand when you commented about the calculations done by the dietician cos' the same goes for my boy too... he is 18mths CA and weighs 9kg. The doc and dietician are concerned.... and its quite demoralizing too. My boy was born 28weeks and weigh 1.09kg and had poor post natal growth. You know what I do to help him eat more? Let him play with the food. It gets extremely messy but I realized he eats more... not too sure if it works for other kids or not. I agree with you about the part on chewing.... when my boy was 6mths CA, the dietician kept pushing me to feed him semi-solids; kept insisting that I make him practise chewing . The reason is because this is the window period for them to learn how to chew. It was a really painful process because he kept choking and threw up his milk etc... Hope your boy will gain weight soon and that he does not need to go for the injections.
 
Hi Xbliss,

My girl was born 26 weeks, 590 gram. Danya AA is 25 mths, CA 21.5 mths, weight 8.2kg. I agree with lilac, let him play with food. If he is interested in playing with the food, a good start. Let him messed up the meal and encourage him to smear the food around his mouth as this will excite his taste bud. We usually give Danya 30 minutes for solid and not more. If we put too much emphasis to eat more during the meal time, this will create a resistance from our child.

As for food selection, you are doing great. Continue to give vitamins with Lysine will help to increase appetite.
 
Hi, yes my gal is my first child.I was given steroids when my waterbag burst.docs Nv say anything abt her lungs.they say that the first hurdle she needs to cross is to know how to breathe on her own.
 
David,

Thanks for the info! Xiaowanzi had told me that Dr Ong is quite good too and was the one who operated on Lucas. But it's really hard to get appointment now (esp i so late minute), sigh...so i m sticking with Prof Prabha from NUH (he was the one who operated on Issac, hmmm...actually i dont want to see him, but no choice now). Hopefully it turns out well...will be there next Tues!

Afcai,

We tried all methods from different doctors, not helping. We even gave him those 泻药, doesnt help much and it;s not good to use for long time. We gave chinese medicine, it stopped working after a while.

Julbee,

Welcome to our thread. Please dont worry too much...33 wks and above 2kg is really good.Did doctor say why she needs machine? Is she using ventilator or CPAP? If you have time to read back our post, u will see actually our warriors are very strong fighters. My baby Xavier was borned at 25 weeks, at 650g. He is 26 months now, and doing well generally...I am sure your girl will be fine, just let her take some time. ALl the best , take care!

Xbliss,

Long time no see! I think most of our VLBW babies are struggling with weight. My baby Xavier is 26 months, 22mth CA, and 11kg. He didnt put on much for the past one year either. But different from Brian (i hope i got the name correct!), he eats really well, but he doesnt pooo. We wonder where the food goes...really. Now we use suppository every 3-4 days for him to poo, if not nothing will happen.

Last Dec we did x-ray and doctor suspected he might have Hirschprung disase, and later on other doctors said he is not typical but maybe his intestines have development problem due to prematurity. We are really lost now, so next week, we will be going back to SG to do a thorough test.

Do you think our babies' weight problem have anything to do with TTTS? Sometimes i think it's the side effects...sigh..
 
Hi Xbliss,
How long will ur boy need to take the hormone jab? Is not a long term therapy right?
The PDs asked us not to start semi-solid so early, she told us at least after CA6months. But we just gave bb a very little bit of banana or potatoes to taste around 5 months. It is only for a trial. She got very excited. And she still likes porridge that is very watery and smooth till now CA16 months.
I let my gal take the Seven Sea Multivitamin with Cod liver oil. I find it is very good, she is on that for about 4 months. Her appetite about the same, small but can eat frequently like ants. But her immune system I feel really improved. She recovered faster from flu or even escaped it when everyone at home coughed and flu.
 
jas
wat is TTTS?

Aixin
oh, my boy was on the seven sea multivitamin with cod liver oil for few months but its orange base so i afraid will lead to more phelgm.. so i change to normal multi-vit and gave him scotts emulsion, original one..
 
Jazz,
What is TTTS?
My gal Valerie got the opp problem from ur Xavier. She poo too much. And quite sensitive to food, we don't give her vege cos we found that she poo like 4-5 times a day if we give her vege. Very moderate amt of fruits.
 
Hi Jagiebaby and Aixin,

TTTS = twins to twins transfusion syndrome. Both Xbliss and I had the same complication and that was why we gave birth prematuredly.

Aixin

We should combine them together and divde by 2. hahaha... Xavier eats everything....anything he can chew, i will give him...But doesnt help, so sad.
 
<font color="119911">xbliss</font>,

thks for sharing yr experience. yr boy's weight consider gd weight. my elder one(full term at 38 wk) even at age of 3-4yr old still at weigh of 12kg.

<font color="aa00aa">Jas</font>,
oic. agreed not gd for long time usage of those medicine. hopefully, u will find the root of the cause.
 
hi julbee, my sister when borned also did not cry, and she also stayed for a week in hospital, but she was borned 34-36 weeks (my mum didn't know).

Talking about speech, after 2 years old, your babies will start talking a lot! MY younger girl is like that, I used to worry about her speech, as she seems slow, only talk in baby language, but after 2 years old, she is babbling like dunno what...
 
xbliss, my colleague girl is also very skinny, she is born full term. She also doesn't eat much leh...
 
Hi my gal is in CPAP for 3 days taking 21% of oxygen.she is in NICU for 5 days le and is now feeding on 20 ml of milk.docs try to remove e tubes from her but she can't breathe independently.they duno y she is unable to do so.really stressful n her weight is going down..
 
kkf,
as for hx, he babble more bb language words than normal words. he only utter 2-3 words for his basic needs. eg 'yao chi', 'kai men', 'ai ni', 'bu yao wan' etc....for this, I think he is 'slower' than my gar. do Violet know 123 and ABC?
 
Julbee,
21% oxygen is the same as what normal air has so that's a good sign. My girl also on 21% CPAP but can't breathe independently yet. It will take time I suppose. It's also normal for bb to lose weight initially. But good thing is that she's taking milk and will put back the weight very soon.
 
Hi Julbee,
Baby lost some weight initially but has now started taking in 4 ml of breast milk every 2 hours through the tube. I pump every 3 hours and send the milk to the NICU. Her jaundice keeps coming back so she is still under the blue lights. Waiting for her to reach the first milestone - 1 kg. It will be a long time before she comes home, I'm just trying to stay strong and brave like her.
 
Viman I m also trying very hard to b brave but it's kinda tough.my gal is now on continuous feed and other than her feeds e docs din say much.she ha 2 desat yesterday n that makes mi really upset..
 
viman, its quite for babies to have a spike and rebound in their jaundice. Is your baby's and your blood type same or different? If it is different, it will take a longer while for the jaundice to go away. That was what happened to my boy. He was on phototherapy for 2 weeks. He's quite tanned due to that.

Julbee, sometimes no news is good news. Good that doc didn't say much cos' that probably mean she really does not have other issues. As our babies are born early, it will take a while for their lungs to develop. Give them time. The day for your girl to be discharged will be sooner than you think. In the meantime, take good care of yourself too.
 
Thanks lilac, I jus heard a baby who is born at 33 wks is discharged after 2 days! Sigh it kinda saddens mi that my gal has to b in icu still..8 days le.
 
Hi Julbee,

Do you know that our little warriors can feel our emotion? Please be strong and you will realize that your gal will fight even stronger when she know that her mummy is also a brave fighter.

I never like to talk to Doc. No update means good. Nothing positive coming out from Doc's mouth.
 
Lilac,
Thanks. My bb follows her dad's blood group. Is the tan going to be permanent? Any other side effects of prolonged phototherapy?
 
Thanks for all e encouragement thus far.my baby gal is in icu for the 9th day.As I read the past messages I kinda envy that ur babies can b off CPAP in less than a week. I m not sure if it's too distressing for my gal to b on CPAP for so long.
She has been gaining back her weight these 2 days.e nurses told me they may try removing her tubes tml.keeping my fingers crossed I really hope she can make it..
Saw her poo twice when I visited her yesterday n nurses say it's a gd sign..
 
viman, my boy is still quite tanned but not as tanned as when he was discharged. Don't worry too much about the jaundice because it is very treatable. I feel doctors in singapore are more precautious and plus our babies are premmies so extra care. I don't recall doc telling me about side effects of prolonged phototherapy.

julbee, CPAP is there to help your girl to breathe. At this point of them, it is better for our babies to be on CPAP than to desat. Good sign that the nurses are going to start her to try to breathe on her own. That means she is showing signs of breathing on her own.
 
Hi Julbee,

When you read the past messages, did u read that before our babies were off CPAP, how long they were on ventilator? My baby Xavier was on ventilator for 7-8 weeks, and CPAP, well, cant remember but maybe 4-5 weeks, then another 4-5 weeks on and off canular....He is a healthy boy now!

so, Dont distress yourself so much... 8 days is not long, all babies do differently, and CPAP is not a very "aggressive" machine, dont worry....
 
<font color="119911">viman</font>,

Just share my experience on my premmiee whom he is considered down with prolonged Jaundice for 2 mth. almost every day, he need to be placed under the photolight.not only that, he had to be poke for blood testing almost daily and then follow by 2-3 days.even after 31 days of discharge, he had to go for weekly checkup for his jaundice. see him making me so heart pain. this continue for 2mth until he is considered a free from jaundice.
 
Thanks lilac n jas, yesterday I was told that my gal has 3 desat so I beleaf e docs will not allow tubes to b removed these few days.
10days le.I will continue to haf faith I m sure she will be back home soon..
 
Afcai,
Thanks for giving me courage. I cannot imagine how tough it must have been on you and your baby. Hope he's totally fine now.
 
Hi all,
My baby had a desat in the step-down ICU so back to ICU now. She has a tube all the way to her lungs. I noticed some blood on the tube and also around the lips. Any advice?
 
Hi Viman,

If the tube is all the way to the wind pipe, than it is a ventilator.

When our warriors are on ventilator or CPAP, they will bound to have a lot of mucus and secretion. A daily suction will be done to clear out the secretion which sometime, the suction will burst the membranes on the nasal cavity which cause bleeding.

It happens to my princess during those days in NICU. Clearing of the secretion will reduce the chances of virus/bacteria growth in the moist nasal environment.
 
Hi viman, dun worry I think the docs r being cautious.haf ur baby reached e first milestone that U set for her? Hope all is well.my baby has this tube in her mouth to suck out all e saliva.the nurses feel tat that's e reason y my baby has desat..
 
David,
Thanks. Yes, the tube goes through her mouth all the way to the windpipe. So ventilator is a step back from CPAP and two steps back from cycling? she was breathing on her own when the desat happened.

Julbee,
My first milestone for baby was for her to reach 1 kg which she did. But doc said today that with the feeds off, she may lose some weight. The PDA had closed but after the desat it has opened again. Hope she doesn't need surgery to close it again. Docs will monitor; hopefully it will close on its own again.
 


Viman, good tat ur baby is progressing.my gal has been on CPAP all these days.today e nurses told my Hubby tat they change another kind of CPAP machine for my gal.is there such a thing?!
 

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