Premature babies support group

Hi Viman,

When we brought Danya home, she was still having her STOMA Bag. For 8 months, she never passed poo thru her anus. Every since her STOMA reversal, her poo is always watery so she does not have any issue on poo poo.

Hi Onefish,

Day 4 & 5 will be the worst for Bronchiolities. Only supportive threatment will be given. Danya almost stop breathing on day 4 due to her lung scaring and 1 week post recovery from her STOMA ops. That was another dark moment for us 2 year ago which Danya stay for 10 days in KKH.

Hi Julbee,

Don't worry too much. Have faith. Focus your energy on the positive thoughts. If early intervent is really required, it will definitely help our child.
 


Just to update: my boy was discharged today. David was right..only put my bb on more O2, plus pulse ox monitoring and 2 hourly ventolin puffs..all of which I can do myself at home. Ah well. Having the nurses puff him allows me to sleep at night. Fortunately nothing eventful happened. Just spent 4 boring days at kk. Hopefully bb didn't pick up any MORE viruses during his stay. His current cold was courtesy of someone who coughed in his face at Clinic K.

Julbee, sending good thoughts to your bb. How is her development like apart from hearing/feeding?
 
Onefish> she is great!her wt is 4230g at 14 wks 3 days.all tests show she is normal.her muscle tone has improved n she kicks with much strength!!
 
Julbee,

Glad to hear the results turned out fine! Hope her ENT test will be equally fine!

Costa,

No lah, not brave, i m forced to face it mah....Actually my 2nd bro's family in SG did help me a lot while i was staying a year in SG, at least i got a free flat to stay!! And they always offered help here and there, and even lent me maid when we didnt have help! Back in Shanghai, i have my in laws
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But they are not very good in health, so they said if we r going to have a 2nd one, they dont want to help again..

For the past year, i've been struggling with my job and Xavier. Xavier's constipation issue is really driving me crazy soon..Shanghai's medical really sucks big time and i no longer feel safe and comfortable here. So, after a long time thknking and discussion with my hubby, we have decided to move back to Malaysia. I will become a full time mother for time being till Xavier's constipation issue is settled/ or when he is fit enough to go to school (somehow i jus cant bear to send him now though he is already 29 mths).

And a good news is.....i am pregnant
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Just found out 2 days ago! I didnt expect it, i was jogging so much and playing basketball regularly!! On sunday basketball game, i felt something strange, so i went to check...big surprise! Hopefully it will be a smooth pregnancy... no more twins pls :p
 
Hi mummies,

It is another sad day. Another warrior has left us.

For all new mummies, I am still hysterical in keeping Danya safe. Any minor virus infection can be devastating to our warriors. Please avoid crowded place and continue to upkeep the hygiene. Good to be kiasu for the wrong reason.
 
Jas,

Congrats! No more basketball please !!

Will hv to pm u more if need to find out more abt shanghai healthcare...yr hb gg to wk in msia? Do contact us if u r in spore.

Mummies n daddies, this board is abt to reach it's 5th birthday n I hope that d spirit of sharing n bonding will continue juz like d way every mummy n daddy had helped me in d past ！ cheers
 
Hi Mummies,

RSV.

Hi Jas,

I wouldn't review who. It is a difficult time for her. She has the same situation as you but the cause is RSV infection. I am asking HIM to look over & protect her remaining twin.

I pray that God will look over all our warriors, keep them safe, let them have their moment to grow up and appreciate the beauty of this world. My heart just felt so painful.
 
i can emphatise the child suffering from RSV cos my gal who was 3mth old then, contracted directly from my new maid who coughed in front of her whild feeding her milk.

she went thru 21 rounds of nebulisers, steroids, antibiotics and mucus sucked from nostrils and throat to send for lab diagnosis.

thereafter, we quarantined her for entire one year (was flu-free symptom for all the months of quarantined). we couldn't care if our no-so-understanding relatives or friends got offended whenever they said they want to come by for visit, then. we will screen by telling them please don't come if you have or just recovered from flu-like symptom.

after the 1 year of quarantine, we slowly bring her out and she caught virus symptom again. however, pd said it's safe for child above a year old, even if it's RSV again, cos their immunity is stronger. my gal has had 4 rounds of flu attack after we released her from quarantine period.

RSV will attack bb who is born light weight and premmie as well. My gal born full term but was born light weight.

Lesson learnt:
we will quarantine new maid for a week from baby care. we are alert whenever maid cough, will give her medication or send her to GP.

we are cautious whenever our gal cough nowadays.

we will avoid her from any peers or adults who cough although can't be 100% guaranteed avoidance. my gal caught bad flu symptom on the 1st day of playgroup (when we thot she was ready to be in school. she was sicked for 21 days, and we decided to pull her out from playgroup totally). we are sending her in again on monday, and finger-cross we hope she is stronger now.

we are still paranoid up to today, after her 1st RSV attack when she was 3 months old.
 
How can we stay stronger to avoid all these flu viruses???
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I am really paranoid with those people who sneeze and cough openly on the buses or mrt. As I caught flu so easily myself and the flu/cough was part of the reason that i gave birth prematurely. Last year, my gal caught the flu virus for about 4 times, 2 times ended with nebulizer. All because I passed it to her.

Take care daddies and mummies, we need to stay strong.
 
Jas,

You said you are moving back to Malaysia, which part? Will you get more family help there?

Wish you a smooth pregnancy.
 
My bb jus did a vfss test.. E first few min of her swallowing was fine.. After that we saw some of her milk goes into her lungs.. SLT now recommend only 5 min of bottle-feeding..anyone has similar experiences?I m very disappointed.
 
Hi mommies and David,
Update on my baby - she has reached 3rd percentile for weight (3.465 kg at 7 weeks adjusted age) but still below 3rd percentile for height. Doc noted a dimple on her back and asked for spine scan in a month's time. She will also have a brain scan to check on the bleed they had found when she was in the NICU. Blood phosphor levels are unfavourable so doc gave a new medicine. (Quite expensive, $129 for a 20-ml bottle!) Hope everything becomes all right soon. I want to thank all of you for your support and encouragement, and even though there are still fights to be fought, the path has been much easier because of you guys.
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hi, u definitely can avoid passing flu virus to your child. at home, whenever one of the adults are sick, we will get her to avoid by wearing mask or stay put inside the room until recover or avoid coming out to living hall when bb is there. eat last, not together with baby. if either spouse falls sick, sleep next room or sleep on the floor with a mattress. common bathroom or master bathroom to spray with dettol antiseptic spray (the one that is to kill virus, germs, or bacteria type). the sick family member to avoid interaction from the other family members. sound weird practice but it's worth it.

we have done this many times and our gal has been free from it.
 
Hi Jas,

Congratulation. Single or twins, as long as smooth pregnancy. Wish that I can have another child but can't. Do not wish my wife to go through the same life threatening moment again.

Hi Julbee,

Be patience. Some of our warrior just needs a slight longer time. Continue to encourage your BB. Don't let your BB feel your disappointment.

Hi Viman,

That is a good achievement, 3% at CA7 Wks. I know the battle is still ongoing. We are still fighting this battle together with Danya with regular schedule back to KKH for her therapy. Fight on.

Hi Chalkey,

I totally agree with you. I still stock up mask & hand sanitizer at home. I don't welcome any relative even my own parents if they are not feeling well. I will self quarantine myself if I am not feeling well. This is my house rule. Always good to be Kiasu for the wrong reason.
 
hi, my personal view is do not put your premmie in childcare as the virus attack over there is much, much stronger than the hourly-type of classes.

on one recee visit into a child care centre, we noticed a pitiful 5yr old was blowing her runny nose at nap time..no quarantine, sleep together with the rest of the kids in the hall. hubby straight away decided to rule out childcare centre. end up, decision is I have to be on full-time housewife until my gal is stronger in every aspect - health and smarter in speech. he believes kids attend class in hourly may able to learn more vs childcare centre (he feels childcare centre is like army camp, very restrained..so kids will release themselves and naughtier when they are back home)..
 
Julbee， yr bb is discharged n at home? Wat is vfss test? How did they noe d milk went To bb lungs ?

Mbe ask d doctor what she or he thinks?

My son was tube fed at home after discharge for afew mths.. I was pretty sad b worried but believe that for you, things wd only get better thru time.. My son could not drink for long n was breathless n can drink till fall asleep ...

Onefisht,

Yr bbs very lovely!
 
David, yep boy twin still on cannula. Tube feeds also. He had a v long stay in kkh - almost 10 months, and still has a alot of followups/therapies. My hubby likes to joke that our boy puts the "chronic" in "chronic lung disease." Happy to report that he finally started cruising at 11 months CA.

Actually girl twin is the chubby one. Maybe becos boy twin is in the foreground, so its a bit misleading.. ;p At their last checkup at 11 months CA, girl is 10.6kg and boy is 8.6kg. 85th and 25th percentile respectively.
 
Jas, congrats and wishing you a healthy 9 months!

Julbee, sorry no experience with swallow problems, just want to encourage you to hang in there. I know it's difficult.. my boy is still on tube feeds today!

Viman, great news. Keep up the good work.. bbs tend to gain more weight at home under the loving ministrations of their parents/gparents.
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Chalkey & David, always good to be reminded to be vigilant. I've been slightly careless lately, going out more in public etc. Although most of my boy's outings are still to KKH..

Childcare is a huge headache for my family. I would love to return to work but I cannot trust anyone with my boy's feeding needs, not even my mother.
 
Soho n viman,

Think hole in d heart n PDA r separate issues...

Soho,

Think maybe u ask d doctors? Mine had PDA n it was closed after some medication.. Maybe other premmie parents can help?
 
viman,

u must bring baby back to the heart doc for monitoring like me?mine also has an extra heart vessel smwhere also need to brg him for check up...

hope that our babies/toddlers over come all their challenges...
 
Just came back from ped dr appointment. Was shocked to hear that my boy is being referred to special school for therapy. Does anyone have any experience/info about that? My twins are 13 mths CA.
Happily my girl is doing fine and doesnt need any followups. Wts are 10.9 and 9.1 for girl and boy today.
 
onefishtwofish,

Wat did the paedi doc say? Which special school did she refer him to?Maybe (my own opinion) is that he is juz recommended to go there to supplement normal school ?

i read from the papers (mind yr body section a few years back)that there was one preemie child who was referred to special school and subsequently he also went there plus to normal school and now already in primary school and doing very well.
 
My bbs are 13 mths CA.

dr agarwal actually didnt say much. I expressed my surprise..and honestly I don't know anything about it. I thought it was for kindi and up ages. She said that they do therapy for under 1 year old andup and that my boy needs more intensive therapy than what KK provides (not enough therapists).

Still...sounds scary. Esp when I looked at the special schools online and none of the info talks about therapy.
 
onefish,

So Doc A wrote you a letter to refer you to a school? maybe you can send her a email or get the referral to see which school she is asking you to go and go have a look at the school?
 
sorry board ate my post. I think the referral is internal or between institutions. I don't have the letter. In any case the referral process is like 3 months. I guess it's the same old story -- wait and see.
 
onefish,

hope everything goes on well for you and that you get an answer soon....

Guess early intervention is good for our kids to help them cope with the issues that they need help wif..
 
hi onefish, yes - u can't trust any others to feed except yourself, cos they can't emphatise your child's ability and speed in swallowing and often resulted in shuffing food in super fast, before he/she can swallow thoroughly. i oso can't trust my mum to feed cos each time she will complain to my gal, that i ate superfast and she's superslow now..hear too much complain, i oso feel slightly "offended" cos she can symphatise or emphatise with my gal's feeding rate..
 
Hi Viman,

My boy also have a hole in his heart. Recent check up has reduced to 3mm small. The doctor said it will closed by itself, Just monitor yearly till it really close. My boy now is 3yrs plus coming to 4 years old. So dun worry too much.

Hi Onefish,

My boy also came home with nasal cannular after a ll mths stayed at the hospital. He also see by Dr Argawal.

Same situation as u, he was referred to special school. Last time same as u, i was very worried is it something wrong with my boy? How come he was referred to there. But after enrol him, i reliease this is not as bad as i thought.

Due to our child stayed in hospital for so long and moreover went home also with oxygen support. There will be some skill which they are unable to pick up as compare to the other children with the same age. Like walking,speach or even feeding. So they will consider it as GDD. Global Development Delay.

So at there, they will have therapist to tackle their problem and help them to catch up as fast as they could. So far my boy is doing well although still abit slow as compare to other same age group but as least he is progressing. Once u find that yr boy is on par with the other children, u can drop out from school. Or u can also enrol him to other school at the same time.

Any other thing, u can PM me. But i will take some time to reply u cos now busy with 2 kids.

One more advise, try not to tape the nasal cannular on the whole cheek, might create rashes and when removing it will hurt yr boy skin.
 
xiaowanzi,

thanks for replying. That's v reassuring. If I have more qns and I'm sure I will, I will pm you. Btw do you recall how long your referral process was? My boy is indeed 2-3 months behind in most areas.

We use a lot of tape for the cannula because it keeps him from pulling the feeding tube out. We hide the feeding tube underneath the cannula. We've tried a few ways but this is the most effective.
 
Process took ard 3 mths. If by 2 mths plus, u never receive the call from the social worker, call them up and check whether did they receive the referral letter from the doc? That time, the doc forgot to submit the letter to the social worker . They will arrange the school near yr house.

Maybe just try to tape 1 side with the feeding tube. At least if one side skin raw, still can rotate to other side.
 
A bit off topic here. I recalled someone who has this book "Supernatural Birth" by Jackie Mize. May I borrow/buy it off from you. Please PM/email/post me. Thanks =)
 
Costa,
Yeah she will see the cardiologist in Oct. Hope the hole closes on its own soon.

Xiaowanzi,
Thanks! That really gives me a lot of hope that surgery won't be needed and hole will close by itself.
 
Can check whether u shave away the hair when baby is few wks old n where u all go ah? I noticing my baby girl hair getting thinner at e side.
 
i never shaved my gal's hair at full months. PD says don't shave also fine cause their hair will naturally thin off to be replaced by new hair.
 
Can i ask if any parents here use Angelcare Movement monitor? Is it like a must-get thing for a preemie that's going home? Just wondering if it's really able to detect non-movement accurately...
 
Sleepiey,
I bought the Angelcare last time when my gal was discharged from hospital. The nurses actually told us not necessary but we feel more secure to have something help us monitor the baby movement. You can adjust the sensitivity, and if u are using the fan make sure test it with fan on so that it will trigger no movement with fan on.

After a short period of 2-3 months we stop using it cos my bb is quite active can't sleep in the cot without knocking herself on the cot. So she was moved out of cot and sleeping with us.

If you want to buy a second hand one, you can contact me.
 
Hi David and mommies,
Do you have a private pd for baby, or everything at KK? I'm wondering where I'd go if suddenly need to, e.g. If baby gets fever...
 


Hi Viman,

We only go KK for regular follow up. We will go to private PD other than follow up for non emergency situation.

For us, we will visit Dr. Lim Kwang Hsein of Kinder Clinic. He is attending to 2 clinic(Mount Alvernia Hospital or East Shore Hospital) depending on schedule.

Please see below link. Cheers.

http://www.kinderclinic.com.sg/
 
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