Premature babies support group

Hi Gracenfaith & Chewy,

Hang in there. Please don't be beaten down from what you have seen. Our little warriors are not as fragile as what we thought. We must have a mighty fighting spirit to fight hard and brave. Our warriors will fight even harder than us when they feel their mummies and daddies are all brave & fearless warriors.

Have Faith, Fight Strong, Fight Brave
 


THX GracenFaith & David..for the encouragement.

And ThX especially to God.. Amazingly after a night of anxiety and praying. Tyler's wound take a turn for the BETTER today. Miracle does happen overnight. The wound is healing and looking good now. And Dr said no operation for now. Back to watch and close monitoring. The reason calling for another operation were the stitches wasn't healing and had splited open. Mainly due to the infections he is having.

YES David, is so true our little warriors are giving a BEST FIGHT better than me. Though fragile in looks, they sure FIGHTING BRAVE & HARD !!!

Travis #2 is doing well too..on feeding of EBM and now weight more than 1kg
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Hope he continue to do well. Just that he need to remember to breath and poo. Something he is still learning daily.

Gracenfaith,
their oxygen levels are like that. It happen to Travis too. I notice when nurses or parents are around, they tends to stop breathing for that moment. Just seeking attentions. Continue to talk to them and encourage them... the oxygen level will stabilize after that.

I'm trying to nap in between pumps now. Today seem better. I got 3 more weeks to confinement. So was careful on the food intake and resting in between. Just going to KK at noon and the hot weathers with heavy rain falls doesn't seem to help me.

We will continue to have faith in God. Pray and JIA U Together.
 
David,

Thanks for the enouragement. Will be strong.

Chewy,

Praise the Lord for Tyler
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Travis is gaining weight v fast
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The weather is quite bad these days. Hope it will get better.
 
My hubby's colleague recommended and I was reading from the old archive that This book is GOOD to have and to read up. I manage to get a copy of it and since haven't been able to put it down.

THE PREMATURE BABY BOOK by William Sears. Thanks to the person whom shared on the thread
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I understand better now that the early stages are roller coaster rides. It's only been 17 days.. and I'm counting down to no TIMELINE.
Though hanging on, I'm still concern on Tyler #1 whom had the operation,having NEC, fighting the numerous infections and healing. Not sure what's ahead and not thinking till nearer. One step at a time
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However, I feeling guilty and bad since I'm more bias towards to him (Tyler). Knowing that Travis #2 is doing better. Is this normal for Twins' Mum?? :S
 
Dear Chewy, I have actually the same feeling! In the early stage, as Desiree needed steroid to help in her breathing, we tend to spent more time praying for her.

Now, we tend to spend more time talking to Renee as she tends to wake up when we call her. Desiree is a princess who prefers sleeping. I feel bad too that I am bias. So trying our best to talk to Desiree too even she is still sleeping and do not respond. In fact, we were so worried that we asked nurses whether there is anything wrong with her for sleeping and sleeping
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Nurses said it is normal.

Aixin recommendedthe book. I have reserved it in teh library but have no time to collect it. Today will be a busy day for me. Have to rush to hosp to deliver milk and go maid agency to settle the maid issue.

I still feel v tired but is coping. In fact, I have not been praying as often as before cos I am so drained emotionally and physically. To be frank, although I still trust Lord, I just feel have no motivation to pray. This is really not good
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I am getting my friend to come to my place to pray with me. Hope this will help.
 
Just seen doctor for update. My girls lung problems are still bad. As such even they have gained weight, Elder is more than 1.7 kg now, she still have to be hospitalised for at least 2 more months while younger will be more.

I was hoping that they can be back soon but now..

Also worried that if they are back with oxygen pact, it will be difficult to take care of 2 of them with this condition.

I am so physically drained n now feel so sad...
 
Hugs Gracenfaith !

I know it's really hard not to have them home soon. But seek the chance to take good care of yourself first before them. They need you to be healthy too.
 
Thanks Chewy.

Just feel v v drained. I am so tired that I can't even have the energy to cry out though I feel so sad.

Will try to be strong. Hope their lungs will be ok.

Doctor also said they are gaining weight too slowly, esp Renee. But doctor said their condition is improving slightly. Perhaps I just need to focus on the positive aspect.

BTW, yoour boy moved house?
 
I know and feel you too ! But we got to hang in there and stay positive. Our babies are striking hard and fighting bravely.

Hope Renee will recuperate speedily soon.

No ,he didn't move . He was sent for some X'ray for his stomach and back to same place next to Desiree
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Pray Hard ... don't lose faith yet...
 
<font color="119911">Gracenfaith/David</font>,
re:insurance

mine are all done automatically and process by the respective insurance agent loh fr getting report fr kkh to submission etc....no need any payment.the only thing is the time to wait.

<font color="119911">Gracenfaith</font>,
pls dun be despair. think of yr two princess....they will be hm soon. pray hard. for me, that time when my bb is in hosp, I also did not go daily. only went once or twice a wk bec I also felt very weak and even admitted to hosp on the third wk of the confinement period.so pls take gd care and build up yr strength and 'tiao' yr body (tough the best time to replenish is during confinement time) by drinking essence of chicken, 'yang mi jiu', 'zhu gan' or buy instant bird nest or other 'pu' to replenish yr energy.
 
Thanks Chewy n afcai for support
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Just went to family doctor to do blood test. Hope to find out what's wrong with me. I am getting depressed again
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I am taking Chinese medicine now. Hope it will help. Sinseh said must take for another 40 plus day. Also used special herbal water to bathe (which is a hassel to prepare).

When I see my girls, I feel so worried and sad for them. I told myself to be positive for the babies but I just can't overcome all the negativity. Getting disappointed with myself for being so weak physically and mentally. Each day seems to be gettin more n more difficult to pass. Esp with my little bm, I really dreaded pumping.
 
Gracenfaith,
is there someone u can talk to easily or call whenever you are depress or alone? Don't let it get to you. I know KK does have social services that you can call and pour your feelings too.

It's tiring and hassel to prepare the bath but Just do it. For your health in long run. No matter how tired you got to do it. Are you hiring a maid if yes, hope she come in soon and she can help you with these chores. I'm waiting for mine to come in as well.

Nurses told me there is an early bird club or something coming up on 3 March in the afternoon. Anyone keen to attend? I'm thinking if I want to go since it's my first time. I met 'Mr Ben' dad the other day , his baby is next to Travis on the left while Desiree is on his Right. Nice Dad and chatty.. he shared with us the early days of ups and downs and how his Boy is doing now too. I feel more comfortable in that environment of parents whom know exactly what we are going through. Like this thread of comforts.

Since friends and relatives are not understanding our stands at times. And keep asking and pressing us for a date on when our boys are coming home.
 
chewy(mkchewy),

Hi, i m the starter of this thread long time ago and also a parent volunteer in kkh..

thk the afternoon session is called "coffee afternoon" for an experienced preemie parent to share wif you all all about your worries and anxieties..

sm of us had gone back before to share and hope that you wld find this session useful....

many relatives and friends are not knowledgeable on wat happens when we hv preemies..let them b......explain to them..i have had dumb pple asking me if i wld bring my kid back for one mth old celebration when my kid was still hooked up...wat to do?just bear wif it..
 
Hello Costa,
yes I know some of these ppl too and one of them is MIL whom gave me the attitude face why we won't be celebrating one mth :S
 
chewy,

want to celebrate?anytime also can celebrate mah....now kiddo in hospital..how to, correct?

watever wld be wld be, let them be, we do our best for our kid and maintain our optimism...
 
Costa

Totally agreed.. I celebrate each day as my boys go through 1 more day getting stronger in NICU too ! The rest of the celebration can hold on... doesn't matter much.

I can totally ignore and switch off with comments now. I used to get affected at first, now my focus is just pumping / taking care of myself and looking forward to seeing them each day. That's the biggest motivation now
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chewy, yup..way to go, girl..

i was crying alot in the nicu also last time but later i was better..focus our energies to learning fm the docs,nurses on hw to care for our babies is more important.....they can feel our vibes...so must stay positive..

hp u enjoy yr coffee afternoon session next month..
 
chewy,

I talked to my friends whenever I feel down, but they are alos busy with work

I have also spoken to the social worker at KK. but no much help
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Yeah, friends though they are concerned, sometimes can get on our nerve when they keep asking when babies will be back. But after one month, many of people are not really bothered about us anymore
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Guess it is my super low milk supply that is worrying me a lot.

My maid will earliest will be in about 3 weeks plus later. When is yours coming? My is from the Philippines.
 
Costa,
yes, I'm making plan to attend .. at least the first one. I'm holding up pretty well so far. Only on the fateful day on 7 Feb wee morning when we were called to NICU for #1 operation in which I cried buckets. I haven't shed another tear so far. I never cried throughout the dramas in labor ward or birth day. I guess my last miscarriage at 22 wks prepared me well to a certain extend. Now , learning chapter for me is NICU !

I need to save my energy been through so much over the past 4 years . Finally, at least I got 2 Live babies now. Nothing much I can ask except for them to get strong each day.

Gracenfaith,
If you like we can meet the next time you pop by KK. Only when you want...

Don't stress over it.. my supply never go up and decrease too coz I been skipping my 2-3am pump for the last two days. I can't do much just keep pumping. Talking to the lactation lady can drive me nuts with her comments so I don't update her too unless she call me. I having the attitude these days, u stress me I ignore you or avoid you. I'm happier being alone and quiet at home, resting and reading.

My maid is coming end of Feb or first week of March - filipino too. First one rejected me/ second one failed all 3 english tests.. both indo. So I changed agent and selected filipino instead. We start with the selection last Dec coz I was ordered bed resting then and thought will be good to have a helper in earlier. But things never goes accordingly to my plan now... I just take it as it comes.
 
chewy,

anybody wld cry buckets if their kid has to go for operation...i cried buckets too..the nurses used to say that i flood the floor at nicu..even when my son progressed to using cpap, i cried becuz i was not used to seeing him lidat...

but can tell you, the experience in nicu wld strengthen u in many ways in terms of knowledge and faith..

i wonder is the breastfeeding room still hving the books you can borrow..mbe u can borrow the books to read up which was what i did..

every single term u hear in nicu may be strange to you and you may feel worried so read up if you can to familiarise yr self.....

the nurses in the hospital in my opinion are fantastic...get to noe them and learn from them..

do pm me if u nd anybody to talk to..

cheers
 
Yeah, good to meet up. Do u have a facebook?

I also skip the 4 am pump as I really cannot take it. The lactation lady was so helpful during the first session. But later when I messaged her, she did not even bother to ans. Once I saw her at NICU when she was seeing another mummy, she was not helpful at all. She can also b quite blunt
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U are v strong indeed. Must learn from u. Haha, but better don stress u, or else u will ignore me
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It is indeed difficult getting maid these days. The agency told us better to get a Filippino for my case as we need them to understand our instructions in taking care of our babies. If Indonesia, they may not understand.
The one that we got is single n no prior experience. But one good thing is she is a Catholic
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We cannot afford to give day off so v few are willing to take up the job. Actually feel bad of not giving them day off but I really have no choice
 
Chewy &amp; Gracefaith,
You both will be great support for each other. For me I only know two mothers in SGH last time, one still in touch the other lost contact already. wonder any other mum from Sgh on this forum besides Sam?

Like what costa said nicu experience strengthen us each day. I really agreed with her.
The nursing room in Sgh got a lot of books, and we are allowed to borrow for one week. After reading most of them, I found the book by Dr Sears easiest to understand and most informative.

Afcai, heard you mention zhugan ... The liver rite? That I heard will decrease milk supply one. But not sure how true, old people said that.
 
My girls are on CPAP for quite a long. ALthough elder girl is already 1.8 kg plus, she is still very sensitive to touch. As she is out of the incubator, we tend to wan to touch her more often. However, once we touched her, her oxygen level will go down. This is very disheartening. It seems that the girls' CLD are still quite bad. Just hope that they would not need any oxygen device when they are back.

Physically, I am still weak. Hate myself for being so weak
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I read the book by Dr Sears and have mixed feeling.

Relieved to know more about how to look after the babies but worried that it seems so overwhelming to take care not only one but two babies.

This journey makes me realise that I am not as strong as I thought I am. I just hope I will get better, physically and mentally.
 
gracefaith
sorry to ask.. ur girls still on the oxygen machine to breathe? do the doc gave u take the jab to mature their lungs b4 deliver?
 
yes, doctor gave. but their lungs are still v weak
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In fact elder one was also given steroid later. Just hope they will be ok soon. I very worried
 
gracebfaith,

i got a philipino maid to help me the other time before my son was discharged..i brot her to the hospital to learn cpr and also tube feeding..But of cse, i m the one who did the tube changing as i dun trust anyone and she said that she was scared...

by the time yr babies are discharged from the hospital, they shld be just like any other normal baby..just have to take note of their own characteristics and little details in taking care of them...the hospital shld have trained u well enough..if u are not confident, just let them noe and thgs can be managed fm there...

steroids are given, thk my son also took them last time...whilst being helped to breathe, their lungs are affected by being the machines used...guess its a matter of time before they are like normal kids..

hope thia helps..cheers

jagiebabie, u mean did the doc gv us the jab to strengthen the lungs?yes, the doc gave me....my son has CLD but also its common amg preemies..so far still okay, just hv to be more vigilant wif their care thats all..
 
costa del sol

wats CLD and CPAP?

my boy although borned @ 31weeks but tink he's lungs consider quite ok ba coz tink by 3rd day, the doc took off the respiratory support from him le.. so i thought its the jab thats doing it..
 
oh ya, although the doc took off the respiratory support, but tink they gave him caffeine, say to let him "remember" to breathe by himself..
 
The CLD will recovered, the lung cells will continue to grow so the damaged cell will be replaced.
The steroid jab that's given to us before giving birth need at least 24 hrs to speed up the bb's lung to mature. But even if mature premie immune system very weak, so if there is infection that likely to cause CLD.
Last time a premie next to my gal borned at week 32, mum given steroid jab, also need to bring oxygen tank when going home. The mum told me her bb got infection in NICU before. So not only the steroid jab that plays a role. The bb immune system must get stronger.

I dunno whether my thought was silly, last time I tried to spent a lot of time in hospital, because I also think I must get myself exposed to all the viruses and bacteria that my gal will be exposed to, so that my gal will get the antibodies from my ebm to fight any virus/ bacteria in her environment. Hehe.... If I stay at home, then I don't catch the bacteria/virus in her environment. But of course if I were too weak and fell sick that time then it is different story... So we must be strong first ;)
 
Aixin
Ya, i was given the jab at week 26 coz that time i was having contraction and show risk of preterm labour, but i tahan till 31 weeks nia then waterbag broke liao..
 
gracenfaith,

the tube was for feeding thru the nose....he was coughing badly before discharged and couldnt really drink thru the mouth..so had to be tube fed thru the nose..

the tube is supposed to be changed regularly for hygiene reasons or smtms he tore it out himself...

but after two mths, i cldnt bear to let him be tube fed and had the maid fed him slowly thru d bottle...

now hes okay like any other kids, drink very fast oni eating very difficult and picky...
 
My nanny told me more than ten yrs back, she did confinement for a premie that cant suck the bottle, so every hour she need to use spoon to feed him with milk. And she said the bb so small she can only sponged bathe him. That bb now already in secondary school and big size lo...
Really need a lot of patience....
 
Dear all,

My younger girl's eye situation worsen. She is having ROP stage 1 now. I am v worried. Doctor said if continues to worsen, it will require surgery. They also found a lump pressing on her intestine. They will review when she is 1.8 kg. If it is still there, she may need surgery as well.

2 possible surgery! My heart really ache.
 
Doctor always give worse scenario gracenfaith, so dun worry too much. maybe they will not become worse, and no surgeries needed.

My boy went thru hernia operation just before he was discharged, and major heart surgery when he was about 1 year old. Thinking back, wow, that was really a painful experience, but he is growing up well now...

be strong gracenfauth, the journey is tough and may be long, but soon it will be over, and your girls will be home.

be patient. good things also need some waiting...
 
Gracenfaith,

have faith all will be fine by the time she have another review. You must be strong to let her out grow her issue too ! ROP stage 1 can be resolves on its own without further progression. Her stomach too.. with her growing daily... the lump might not be there later too.

Totally Agreed with KKF , the Drs just need to give us the worst scenarios to 'protect' themselves. Just 2 wks ago , Dr said Tyler need another operation to stitch up again on his wounds. Since it spitted open and wasn't healing. Then next few days, they told me otherwise and operation is not necessary. He been healing well after the wounds nurse been cleaning him daily. Next , is told about his liver seen with white spots. I know all small or big conditions are concerns and upsetting. But there is so much we can do for our little warriors. Instead, we know preemies journey is ups and downs. We got to brace ourselves to fight it with them from now on...The journey doesn't stop when they leave the hospital for home but for life. As mum , we tends to be more emotional and heart-aching. But we got to be strong to see them through all. U can't let each dr follow up upset you so much. You need to recuperate for your health and mental stress is a BIG NO NO!

I always remember David telling us... they are WARRIORS and will give a good brave flight. Don't give up ... be there for them on their journey. They will know and feel it with our supports . I bet they will do better
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Be strong ! And have faith Renee will out grow all conditions in due time.
 
Hi Gracenfaith,

ROP is common among premmie. Stage 1 to 2, will be still under observation. Stage 3, laser the veins on the retina to prevent them from abnormal growth. Don't worry about ROP. Stevie Wonder is also a premmie and his is blinded due to ROP. ROP was only discover by the medical world during 70s. With the present medical advancement,premmie will never go blind as we are having better medical procedure to prevent ROP for progressing into stage 4.

have faith and be strong.
 
dear all,

thanks for the encouragement. It is just heart aching to know that she is not well though I should be expecting this.

I will pray that all these will be gone n she will b fine soon. They are still v sensitive to touch. Thus despite elder is already 1.8 kg thus, she is still unable to proceed to the cycling stage. Heart ache that whenever I touch her, her oxygen level will go down. Actually, the girls are already 37 weeks, should b able to discharged but they are gaining weight too slowly n being so sensitive.

I told myself to get well qucikly despite feeling drained most of the time. I will b strong. Thanks
 
gracenfaith,

Dun be discouraged. My 29wk bb was also sensitive to touch when he was in the NICU. I only managed to Kangaroo him twice during his stay, and each time his O2 will drop, and once his lip area turned blue and O2 dropped to about 60%. So, I stopped Kangarooing him. But I never give up, I'll stroke his feet, hold his little hands and talk to him. Due to lung infection n chronic lung disease of newborn, he continue to need low levels of O2 till he was about 34weeks. Then he was 1.8 or 1.9kg and the nurses even joked that he's too big for the incubator. Somehow, he just like to sleep in the incubator, when they tried to move him out at 34 wks, his O2 will drop... Came 35 wks, his O2 just suddenly got better n he could finally move house to sleep in the normal cots.

Be positive. Think positive thoughts, especially about your health, if you keep thinking u are week, u'll feel weak. Remember yr gals need u, they should be out in no time and u'll hv no time to think about how tired u are.
 
Dear all,

Thanks for the encoruagement.

My girls confirmed having CLD. The elder condition is more serious. Doc said high chance of going home with oxygen therapy. Younger girl is still under monitoring. I just wonder how to cope if both came home requring oxygen therapy. Anyone has similar experience?

Younger has hernia, which is not common among girls. Likely to have surgery too. Now just hoep that her eyes will be ok.

Doc said that they are gaining weight too slowly n it will be a long way for them to be able to be discharged.

It seems it is one trial after another. I knoe I have to be strong. But all these happening to my girls are really worrying. They are going to have heart scan tomorrow. Just hope everything will be fine.
 
My boy had hernia too, he was discharged already then we discovered he had hernia and was crying whenenver it protude out. So he was warded for the surgery. Very heart pain... Forgot to mention that he choked and stopped breathing one night while feeding. We almost lost him. Thank god we managed to perform baby CPR before it was too late. So dun rush, it'll be better for baby to be stable then get home especially if you are not medically sound or calm enough to handle emergency.

Are yr gals on TPN? My boy was on it, (exp though) and he was gaining wt around 40g a day. And we were able to have him discharged at 2.2kg.
 
<font color="119911">gracenfaith</font>,
doc and nurses will make one alarm. so pray hard and not to worry. the more u worry, the more one imagine. pls dun think so much and stress yrself. really worried u....stay calm for the sake of yr two lovely princes. god will bless them.

same went to my boy who also went thru heria operation (which is common for premmie) before he was discharged. we were so worried that the wound (actually hardy seen it) will get swollen or infected.
 
Have been sleeping almost the whole day. Have fever last nite till 38.4. Went to see doc this morning n he said likely to be virus infection. Feeling better now. But milk supply decreased
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Right now, I am more concern about their lungs. Really hope that none of them need oxygen therapy when home.

Berrybaby-- What is TPN?

afcai-- yeah, guess all of us will have heart ache when babies have to go through any operations.

How long does it take for the wound to heal?
 
TPN stands for Total Parental Nutrition, its a drip that goes directly into the body via the central line (near the heart). Contains amino acids, fatty acids and glucose that bb needs to grow nicely. Each pack plus the treatment is about $500++.

You will be amazed by how fast our warriors heal. They are not given any pain killer after the op. On the first day, right after op, bb was abit cranky, I think it still hurts, quite poor thing. By second day, he wasn't crying or whinning at all already. I went back after one week to remove the dressing, there was only a small 1.5cm line on the lower abdomen, perfect healing...
 
A lot of heart aches and really devastated when our precious babies goes for any op. I cried buckets the first time that fateful wee morning when told Tyler was being prepared for op.

Yes our warriors heal very fast. Tyler had his operation when he is 7 days old only. Though sedated heavily due to a lot of pains displayed by him the days after. He fight on and now healing well. Finally start on his first feeding 2 days ago.

Wound healing will depend on individual. Tyler is slower due to other infections he is having too.
 
Hi, anyone here who had an iugr (very small) baby delivered prematurely? My baby is 800 gm at 29 weeks and i'm now admitted at KK for constant monitoring of baby's hearbeat and possibly early delivery.
 
Hi Viman,

Most of the babies in this forum were borned very small. My boy weighed 635gm at 26 weeks when borned 3 years back.

Hang on there.
 


Hi xiaowanzi,
Thanks for your message. How is your boy doing now? Did he have to be in NICU for long after birth? Also, which hospital were you at? Sorry for the many questions, I'm just really confused and worried.
Thanks again for any advice you can give me!
 
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