Premature babies support group

xbliss, good to know that it is a more conducive environment for the babies. Yes, it is really quieter. In fact, Nate has the whole room to himself which is nice, I suppose.

Jenifur, Jed is doing so well!! Is he going to be discharged soon? I am sure you are looking forward to have him home with you. Eh, I was silently reading the Sept mums thread. Wah, you still very active hor? How you manage arh?

Precious_one, yes indeed, children are God's gift to us. Thanks for rejoicing with us. It feels good to have people sharing in our joy =)

Visited Nate today but did not manage to carry him. Nurse says to let him rest but he has put on weight. A grand total of 1.178kg. We are praying that he will put on weight speedily.
 


Lilac,
Thank I'll Jia Yu. Ready hope that joya will come back home before 04/08 cos is daddy birthday that day.

Jenifur, Thank I'll Jia Yu. great to hear that Jed is doing well.He will discharge soon. God bless.
 
hello! gg11! i saw ur nick and it caught my eyes! we were giving each other support during our bed rest period! ha!

yah, violet 6 months plus liao, yes, started on porridge liao, and she loves it. no lar, long time ago when she was 3 weeks old, i already stopped breastfeeding.

jas! dun be sad, tell u ah, when my boy was before 1 year old, i dunno go in and out of kkh how many times liao due to regurgitation, breathless, fever, bronchitis blar blar...

as our children grow older, they will become stronger hopefully.

i think premature babies for their initial stage of lives, they are really much weaker...

sorry i didn't manage to see all the postings, not too well recently, garna influenza, sooo worried is h1n1. now still not too well...
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anyway, busy buying lots of stuff and selling things. haha! crazy me.

all those babies fighting in nicu/scn, may they continue to fight well and go home sooN!!!!
 
kkf,
i saw dash and ur hubby at compasspoint on sat (or was it sun?!) leh. but i din see u! so i din dare to say hello to them. plus our dear bryan is sooooo cranky these few days cos of his molars teething.. argh!!!!

if worried h1n1,ask for test lor. now the reports say 52% of all flu cases are h1n1, i guess no choice but to take precaution. i also kena flu from bryan.. haiz.
 
hi all

Thks for your support during the time i was on bed rest.

Finally did epi c sect last friday & our little boy weighs in at 2.76kg at 35 weeks. After a scary 1st 24 hrs in SCN, things have settled down, he's no longer on oxygen or on feeding tube.

However, I would like to ask the following questions
1) re: immunisation - should we follow his birth age or corrected age? as he is still considered pre term.

2) is it normal for premature babies to be more prone to hiccups? is it a concern? cos i notice that he hicups often and all the time.

3) is it normal for pre term babies to have periods of hard breathing?

I have asked the neonatal doctors but their answers are not very reassuring, in fact quite flippant - so am wondering.

any help appreciated!
 
Hi xbliss, yes yes, my hubby brought dash to compasspoint think on saturday? i was not there, I was at home with violet.
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yah lor, now almost 50% of singaporeans h1n1, made me so worried. I also dun want to risk getting kids infected. now i am still recovering from sore throat and flu...sigh. it seems like taking quite a bit of time to recover.
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but i still need to go work.

hi babymaking, time flies yah! congrats!!! so ur boy is now home with u? usually 35 weeks and above doesn't need oxygen of feeding tube? cause my gal 34 weeks plus, 2.778kg, she was not on oxygen at all when birth.

Regarding ur questions, i treat my girl as normal babies leh, since her weight is good enough and is just like full term babies' weight, so I dun really treat her like premmie.

She has a lot of hiccups too and is very loud one.I dun think it is much of a concern.
but i dun think premature babies are prone to periods of hard breathing leh...if really got hard breathing, u must be careful, could be due to the heart leh, like got holes in heart or wat?
 
actually babymaking, 34 weeks babies are already fully grown, so gynaes are ok with giving birth at 34 weeks, thereafter 34 weeks, babies just need to put on weight.

so since our babies are ok in weight, so i assume they are already like full terms. You just treat him like full term, since urs already 35 weeks, good enough!
 
Hi Mums,

Pic of Danya taken this few days. We are working hard toward her weight gain. Once her STOMA closure ops is completed, her weight gain will be much faster.

To All Mums & All Our Little Brave Warriors. Continue to believe in our warriors because our warriors create miracles. Fight Hard, Fight Strong, Jia Yu.



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Thanks mummies and Daddy David for your encouragement...

Xavier came home yesterday, finally, but with Oxygen support. He couldnt seem to wean off for the past few days, so doctor decided to let him home since he looks fine other than the breathing. The oxygen level is pretty low also..Still, we were sent home by ambulance, a bit kua-zhang right....Well, I am glad that we are home! Staying in hospital is really draining for us, as there is no proper bed...Worst thing is the pulse oximeter alarm keeps going off since Xavier keeps struggling off the canula....Really drives me crazy during wee hours..and the antibiotics made him diarrhea, big job changing diapers
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BUt actually coming home with Oxygen support and pulse oximeter are really hardwork....Feel like reliving the nightmare in NICU, beep beep beep....

Precious_one, I wonder how u coped ?? Having this experience made me salute u !!..I only tried one day and i felt like dying liaooo...
Btw, how do u move around with the oxygen concentrator and pulse oximter? Is there extended long nasal canula? need some advice...
 
Hi all,

I did not post here regularly due to work commitment but once a while, i would come in and read about all the progresses of all the little fighters and warriors!!

KKF, time flies, Violet is 6 months old le!!

Kayton is now 3 1/2 years old, hmm, his weight still a big concern to me, for almost a year, he never put on anything, still remain as 10 kg! He is even smaller than those 18 months old babies at our neighbourhood!

Sometimes, it worries me, but i do get a peace of mind when i see that he is not losing out to his peers in childcare....infact, for motor development, he is good.

People can underestimate him due to his size and end up being shocked by what he can achieve!!

I was browsing this page then i saw the table and heheee...i almost forgot, how small he was when he was born!

So, for parents with low weight premature babies, do not worry so much for now, your baby is under the care of team of professionals....mummies, do not give up on expressing milk...i know it's tough to just express every 3 hours or so as your baby might be too small to latch on...but soon, when he/she is fit enough to be carried by you, the effort and the pain is all worth it!!!

Adeline
 
Hi Nana-kuchi,

If you can be so kind to update the table, you may add in my son's name, Kayton Soh. Spend 59 days in NICU. DOB is 16-Feb-2006.

Adeline Lee
 
Sighs... Jeriel suppose to be home this week, but suddenly realise that he got hernia. Going for surgery tom.. thats why been so busy n stressed up.. Its going to be done by Dr Chiu, he is a visiting consultant at KK and pte practice at Mt E. sighs.. really lost for words.. heart pain..
 
Hi Jas Mum,

Hummmm. Don't worry. Hercules Xavier just need some O2 booster. He will sure rock and surprise you very soon on how speedy he fight back. Don't forget, this man is a warrior.

We are so use to beep beep sound. We brought a Angelcare monitor for Danya. When Danya inhale and exhale, the sensor will pick up the movement and it will go beep beep beep. Ha Ha Ha.

Hi Sam Mum,

I know it is heart pain. We have gone through that one time. We are going through another time soon. Don't worry, hernia ops is safe. Only concern is whether our warrior will take a step back after the ops. Some warrior may need CPAP during the initial 3 days after ops because they are normally under sedation. Fight strong and cheer Jeriel on cause this is only a small challenge for him.
 
Jas
I would have died 100 times more but I knew that I had to be there for my fighting Angel previously. Very siong then.

We brought the following each time we visit the hospital:

1) 2 tanks of oxygen (can't bring the concentrator, too bulky). At the level she needed the oxygen then, 1 tank will last her about 3 hrs the most so we have to stand by one for contingency...bad traffic etc.

2) portable suction machine with cathether, saline water etc. medical accesories ...

3) cpap machine

4) pulse oximeter

5) diaper bag

It was really handful, hb, me and maid have to go together as too many things to carry. We invited a lot of curious stares too.

I survived on 4-5 hrs sleep daily until she wean off her oxygen. I paranoid or wei da? I know others will think I kiasu which is true, I can't afford to lose her. I felt good to know that you at least know what I've gone through. One has to be there to understand the pain.

David Dad
Danya's happiness is contagious!

Sam
Hernia ops is safe. Don't worry. CPAP after hernia ops....hardly seen unless your baby still cannot breathe well, most discharged the next day liao. Congrat's on Jeriel going home on Friday....

babymaking
kkf is right, 35 weeker baby with good weight, as good as full term. Congrats!
 
Hi Jas,

My boy also discharged with oxygen support, a nasal cannular. He took 6 months to wean off the O2 support.

I rented a portable oxygen tank inorder to bring him around or to KKH. When you reach KKH, u can change to use the hospital oxygen inorder to save yr oxygen in yr portable tank by asking the clinic nurse. I did not bring the oximeter when we're out, try to learn to look at yr baby's face color.

Anything, u can PM me. If i can, i will try to answer yr queries.
 
Hi David,
Wah!! Your baby looks so cute... heart melt liao loh!!
A nurse in KKH once comments these “the babies here are warriors, no matter how tough their day is; at the end of day they go to sleep with a smile.... " we must learnt from them...

Hi Adeline,
dont be too concern over weight gain, if your boy is doing well and health. My niece who is a term baby at birth currently only weight 13kg at 4yr old. of coz she is super underweight, but it in our family to be light weight.


Hi Sam,
Fully understand what you are going thru. Same case as my girl. When we thot it time to go home then suddenly got to go for hernia on both side.. dont worry. he will be fine. it not even consider as operation. it what they said "to correct" the "defect" and my baby dischrg after 2days. Her feed went back to normal after the 2nd feed after surgey. Be strong! Will pray for Jeriel.
 
Hi sam,

don't worry abt the hernia op, its actually quite common for premmies.

Actually, my boy gone through the op too. Worse was we were at the entrance of the SCN to visit him and I saw a baby being pushed out. Then I thought to myself that he looks like my boy. But I brushed aside cause I find most babies looked alike anyway, especially when the nurses like to change their beds and I always had a hard time finding my own baby. Then I saw the cubicle where my boy is empty, so I thought they change his bed again, only to be told that my boy had hernia and needed emergency op. It was only then that I knew that was my boy being pushed back to NICU.

Then rushed back to NICU, saw my poor boy crying and the nurses preparing him ... really heart pain....

But he is ok now .... under my tender loving care
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Hi kayton mummy, did not see u updating ur blog for quite some time!
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how r u??

david, danya is very cute leh...she can smile already! wow! really so cute.

Sam, yah, guess u do a survey here, almost all our babies went thru hernia operations. dun worry, it is a very minor surgery.
 
Hi tigger,

Actually, not only premmies have them. even term baby also. My girl fixed appointment for surgery was pushed back for a term baby... as it sudden became A&E case. in the end, my poor baby fast for almost 7hrs! she was feed every 2hr then...
after the whole surgery end... was almost 8-9hrs gap... she was super hungry and angry!!

wah, your case so drama!! u didnt make noise?

I almost flight with doc on duty that day. because of his causal remarks.

he was saying something liked "... dont worry, the scar is so small.. she can still wear bikini when she grows up..." immediately i snapped back.

"it about the healing and the thot of a young baby gg under a knife...gosh!!"

in the end, it was the surgeon who give me assurance and explain everything in detail.
 
Hi WH,

No I didn't make noise, though I suspect that in SCN, due to the babies and nurse ratio, that my boy must have cried too much that the hernia developed overnight. Cause no matter what time I visit, the diaper is always full (like going to explode kind).
 
david,
danya is reallly cutteeeee!!! i wish i can hold her! so pretty and cheerful!!! i never got to see such a toothless grin on my boy's face leh!!!

Jas
have fun with xavier at home! dun worry about the oxygen, he will learn to manage very soon on his own!
 
<font color="119911">babymaking</font>,
re: yr qns

1) re: immunisation
too my boy to polyclinic for 6 in 1 jab. he followed his birth age.

2) no hicups for my preterm boy but got hicupp for my full term gar last time.

3) err..no comment...my case is reflex problem. my boy only on oxygen for 10hrs after birth.


<font color="0077aa">kkf</font>,
hi 5, I also got running nose and slight cough last wk but recovered liao. 2 wk ago, loaded with heavy head and slight fever. so scary...of cos, I did not go n see doc if not...scare man...

<font color="0077aa">Jas</font>,
oh....u must be very worried abt Xavier.try to stay cheerful. sure bb Xavier will be ok. HX also developed fever after his first 2 jab. this fri, he will be taking the third dose so the dose will be much strong, sure kana fever. we did not measure his temp.

tot, those jab is to jab in the new virus so that the bb body system can fight against it....

do take care of yrself too.

<font color="119911">David</font>,
welcome bck. haa...will u be joining the panda club too (haa...recruite member loh..)?

wow, I luv Danya's smile. seeing our premmiee smile, they will melt out heart.

<font color="0077aa">sam</font>,
my boy kana fever every jab. so will give him panadol when I get hm fr his jab. it will be better for him.

<font color="0077aa">lilac</font>,
it really very scary to can't find yr own bb. I also got scared few times at SCN cos my bb also being shift few times (did not pay rental mah...:p). what is cycling in medicial terms?

wow, u must be happy until no words can describe. cheers....

<font color="119911">xbliss</font>,
oic.

hmm..do hospital let u stay overnight?? my boy also has hernia op leh...but we did not stay.

<font color="119911">sam</font>,
dun worry abt the hernia. my boy also has it. he is super hungry after the op.

<font color="0077aa">WH</font>,
same like my HX, he was super angry and hungry after the hernia op.
 
zola, have added ur kids' URL to my gal's blog..her blog is at kathleenmak.blogspot.com

jas, good to be a good cow..my colleague who just came back from ML also pumping in office... i wish i have such good ss last time! i am surprised tat doc will give 6-in-1 and pneumococaal at the same time... some mommies said its too much viruses at one shot...

gg11, in the end the gathering was cancelled as dash has fever....

afcai, i am surprised hx's ntuc appn was rejected since he got 100% NO issue/complications....

sam, re fever after jab, some old folks will say give pao sheng/barley water before jab to cool the bb first... some mommies said give paracetomol after jab even when there is no fever to prevent fever from happening.....

lilac, congrats on being able to carry nate!!!!!

kkf, actually its not 50% singaporeans kena h1n1.. its 50% of those that kena flu has h1n1..but i duno how many % of singaporeans has flu... i am also worried..on one hand, if they kena and get immunity, might be 'safer' if the virus mutate, otoh, very scared since our kids are in high risk groups..sighhh...

david, lovely pic of danya... her smile is so sweett!!!!! oopss i thot angelcare beeps when there is NO movement, not when there is movement???

adeline, aahha..my gal is almost 3, 11kg only...almost like ur son..very good motor skills too..... and often being mistaken as 1.5 yrs old :p

WH, ahahah.. i think medical staff always use 'bikini' to 'cheer' pp up..that time after my emergency c sec, the nurses are also saying that my scar is so low i can wear bikini and yet not show the scar...
 
Hi all mummies,

Thanks for all the precious advise.. I saw his wound yesterday.. like c-sec. small cut .. but plastic cover over it. hmm.. he was cut both sides just in case.. ..now i headache.. how to bathe him and take care of his wound when he is back.. im quite worried.. i know after my C -sec.. its like hell... furthermore 2 sides for him. But he never cry except hungry..really dunno hw to handle 2 when he is back..
 
SAm
when my gal was back, i just sponged her till i remove the plaster 3 days later (use baby oil assist in the removal of plaster) she too has bilateral hernia op.... think premmies has high pain tolerance....
 
Sam
Two babies at home .... challenge ..... one for dad and one for mum.....the 3rd one home....headache ah ..... both u and hb have to learn to carry at least two babies at one go..... can't imagine when they are toddlers...usually after they learn how to walk, they want to be carried all the times .... faintz but it is going to be fun .... btw, my younger sis also small built she damn good, even when her boys are older, she could carry two boys at one go....that's 20 kgs load ...on a 40 kg... I salute to her man! You got helper at home right?
 
baby oil to apply on skin n the adhesive part of the plaster... oil can dissolve the sdhesive, so when remove, cos no pain to ur boy....
 
Hi Sam,
liked baby "surrender" post... hands up!! ke kee

the doc advice us to keep the wound area as dry as possible. we also sponge her. and we didnt remove the paster ourselves. was advice to go GP/poly clinic. In the end, the GPs nearby my plc none of them "dare" to remove the paster for her. Luckily, the following week was her review and KKH removed it. and it was not that "sticky" and peel off easily so not pain to baby...

think for babies less painful b'coz they cant walk so didnt use the muscle there, compare to us.
 
Hi Bloom,

oh yr ah-girl 3 olreadi?
good mah. mistake as 1.5yr... meaning she got baby face look... next time when grow old liao olso cant tell...forever young!!

for women we "ai-sui" ok to joke abt the bikini lah... baby leh.. sigh!! to me it a bad joke... at the moment dont have any funni bone..
 
Hi Everyone,

Here's a pic of my little Erica born 27weeks in July 2006. She just turn 3 about 2 weeks back.

Warriors they are indeed.
 
Hi Everyone,

Here's a pic of my little Erica born 27weeks in July 2006. She just turn 3 about 2 weeks back.

Warriors they are indeed.
 
Hi Everyone,

Here's a pic of my little Erica born 27weeks in July 2006. She just turn 3 about 2 weeks back.

Warriors they are indeed.

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Sam,

mattias is so cute, i like his sleeping pose..and his pouty lips..
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WH,

Your bb is so fair and also has such nice eyes...Such a darling...

To all mummies,

So long never really posted here, have been busy with lots parties and also coping with Jerlynn's crankiness which might be due to teething... she needs to be hugged and listened to her complaints nowadays...talking alot and as though trying to tell us she is uncomfy but there is nothing we can do except holding her the teether and also applyin the teething gel. now she sleeps at 4am again!

Nowadays we keep bringing her out, and she really enjoyed it...keke, but It's really very challenging in bring a small baby out...Duhzzz...Alot people also commented that her looks changed liao, and more and more like her daddy and more and more like a boy...*Faintz*

Alot of people are also commenting, though it's as though they are praising but I feel alittle sad to be always being reminded of... They were saying that Jerlynn doesn't look like a Premmie at all, hmmm i threw them back the Qns,what is their perspective of a Premmie. They said should be skinny and small in size...and Yes, I told them, they were borned smaller at birth cos they were not due yet, but that doesn't mean that they won't catch up, and they do catch up eventually and of cos also stronger and positive! Sometimes also dunno how to express how i feel, to me is aren't our little fighters just as normal? It's just a matter of borned earlier or later isn't it?

I also want to share - My little girl (or most ppl who don't know thought she is a Boy even with pink cap) now at CA 4mth 2 weeks old - 7kg
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Luana,
hws the gers?so long din catch up wif you..hope everythings fine wif you...Erica is so big liao...din see her about a year already...
 
gingal, Jerlynn really looks like a little boy!!! Sorry ah... but got to make that comment cos' when I saw the pic, she looks like a very chubby boy. Ke, ke and she is so well fed!! Look at her rosy cheeks and sparkling eyes!!

afcai, you are so farni. But I did pay rental leh... oh yes, they upgraded Nate to delux room so that's why I can't find him. Hee, hee. Cycling means they will let Nate breathe on his own without the CPAP for an hour and then put him on CPAP for 2 hours. Slowly try to let him breathe on his own for a longer period of time. But early this week, he failed the cycling test so doctors decided to stop the cycling cos they worried that it will strain him too much. Oh well.... what to do? CPAP is the major milestone that he needs to overcome. Once he is able to be off CPAP, they will transfer him to the step-down or SCN. So am praying hard that he will perform well at the next test.

Sam, Mattias got the hamburger cheeks!! Feel like piniching him. Hee, hee... very cute. How are you coping?

WH, your bb very fair leh. Very nice. Did you apply any whitening cream? My Nate is really dark and tanned after the phototherapy.

David, Danya is such a sweet little girl. You guys must be enjoying her alot. She has a very sweet smile.
 
Luana,
Yr ah-girl got alot of hair yah! envy!! pretty little girl.

gingal,
yr girl girl eye also quite big yah... aiyo, she looks so huggable, i wanna to carry her.... 7kg good weight yah. my ah girl not even 6kg yet... btw, what her height?

We r on the same boat; my ah-girl always being mistake as ah-boy too... so got used to that olreadi. ke kee

lilac,
fair meh? may b all dress in white? or lotsa soya bean during preggy?

Oh, i know... we hardly bring her out door... ke kee always at home turn fairer...
dont worry, yr nate will be fair once home with lotsa TLC (tender loving care) fm mommi..
 
Hi Costa,

How's life and little Bernard?
Hi Gingal n WH, nice to get to know you.
How old are your premies?

Actually, I do have something to share with all of you. Costa, I'm not sure wether I mentioned to you we brought Erica to see a Speech therapist bec of her speech delay. Therapist was highly recommended by my friend whose son, though full term was dignosed with speech delay. I must say that she is REALLY very good with children, and great at drawing them out to speak. Erica made big improvements under her watchful eye, of course she is extremely firm but in a nice way. Anyway, the ST noticed that Erica had a high tolerance for pain, when she played with Erica during therapy seesions, she noticed that Erica would step on toys deliberately &amp; laugh or feel no discomfort ay all. We told her that Erica could hold hot objects in her hands &amp; touch fire even &amp; she would find it amasing. So she suggested we see an OT just to get an assessment. She intro. an OT and he asseessed erica with a 'sensory disorder'. He gave us a brush and told us that we had to help erica overcome this disorder by brushing her with this special brush, 6 times a day for 8 weeks. THe outcome : it worked wonders for her. The brushing made her more alert, Erica started to open her month to say things that we never heard her say before, she began to noticed many more things like objects around her. BUT the downside was, she became more picky with her food. These were exactly what we were told to expect cos what the brushing does is wake-up her senses that were not fully dev. cos of her prematurity. So in short, her speech delay was in a way attributed to her less developed senses wh is all connected to some part of her brain that responses to the brushing technique. Today, 4 month have passed since she first saw the OT, she was weaned off the brushing and made remarkably improvements. She now can sense heat and pain on her palms &amp; feet which in the past she could not. It's really amazing...

Let me know if any of you are experiencing similar challenges.
 
Mummies,

wow.. all bbs are soooo cute hor.. i want to pinch pinch also.. keke

Gingal,

she is pretty leh.. nice eyes and so cute...

Lilac,

Sighs.. i almost fell sick .. took 4 panadols, 2 anti biotics, flu tablet, 1 can of "She Cao Water" i swallowed it.. 2 bottles of cooling water.. scared scared.. all for my boy.. finally my DH help me look after for 3 hrs to let me sleep for the first time..so felt better today already.

Its really not easy to look after mattias seriously.. and i really cannot imagine Jeriel coming home next week, suppose to be today but postpone as he sort of desat while drinking yesterday.
 
Luana
Thanks for your sharing. It is interesting to know and I'm sure your sharing will help many premies in the long run. BTW, may I have your speech therapist contact, I find my girl cannot pronounce certain sound correctly i.e. c, g, k, q, s, v and x ... i'm suspecting that this is due to her prolonged tube feeding and trachy surgery...she will say "tat" for cat...put her in phonics class and can't see improvement, perhaps ST can help. She can speak in sentences though. If possible, pls pm me the ST's contact. Thanks!
 
hey mummies and daddy david,

Too many posts to catch up, too little time...

My little Xavier is still on Oxygen, seems like he is taking his own sweet time. Initially doctor predicted that it will take him a week to wean off the oxygen support, but now it seems like it is not going to happen
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I never thought i may need to travel to NUH for the follow apt with oxygen support, but now seems like i got to do some plannings liaooo...

Precious_one and Xiaowanzi, thanks for your previous replies! Need more advice here

I only have o2 concentrator, never thought of the tank before...Do you have a cheap vendor to recommend? When I did the arrangement b4, i only had a few hours to call up several vendors referred by NUH to come to my house right away, really not sure if i was offered a good price due to the rush. For o2 concentrator, I opted for 100SGD one time charge plus 5SGD per day, chose this becos i think he should wean off very soon (2nd mth onwards will be 110SGD/mth totally). Pulse oximeter is 250 SGD/mth (2nd mth onwards 7SGD/day). What do you think about the price?
By the way, i plan to buy a pulse oximeter after this month....since I feel like it is safer to monitor Xavier regularly due to his chronic lung disease. do you have any good and cheap recommendation?

Xavier is on 0.25L/min, slowly going down to 0.125L/min (he can only maintain around 90 with 0.125L, a bit not so good). Once off the oxygen, he will desat to 70 plus..But seriously, his face color still the same before leh...I am really confused and not confident without the monitor now...When your babies first went home, how many litre/min were they on?
 

Jas
As A needed oxygen indefintely, we did not rent the equipments, we buy all as we do not who used the equipment before....very paranoid parents here. Anyway, the rental quote was expensive. We spent more than S$10k buying just he equipments.

A needed between 1L to 1.5L intially and reading maintain at 95-98%, never 100%. Advice to us was to main at 93% and above. You may want to up the oxygen a little to have reading at 93% and above.

A's oxygen concentrator at home was a BIG one, cannot be brought outside and it had to be connected to a electrical point, very noisy too. Oxygen tank is used as it is more handy but also heavy for me.

We donated all our equipment to KKH after keeping it for 3 yrs (stand by until A's hole in the neck was sealed).

We bought our equipments from KKH's vendor except the pulse oximeter which we rented but this machine gave wrong readings (I discovered it, was pretty upset with it), Innomedics, I believed they have changed the co's name....later on we found a 2nd vendor, Rainbow to buy the pulse oximeter at S$1400 and portable suction machine. We bought the suction machine from Innomedics initially but this one needed electricity. Silly vendor did not remind us that we need suction even when travelling in car.....

I still have the 2 oxygen tanks with me.
 

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