Premature babies support group

can i check with you all something? will preemies actually outgrow apnea and stop desaturation?

cos my girl will be 38 weeks come this sunday but she is still experiencing desat during feeds and sometimes when sleeping.

nurses have taught me to break her feeds and burp her, like after she has taken 5-6 glups of milk. They also told me to observe her face colour, esp at the upper lips when drinking. Actually, i find it quite difficult to see the bluish tinge when she is desatting. I am afraid that by the time i can see that it is blue, it will be too late....Now is still ok as I am feeding her under the nurses' supervision in the hospital..I am more worried about what will happen when she comes home.

doc has said that if all goes well, she can probably go home this weekend. but i guess if she continues to be unstable, she will still be in NICU.

wondering if any of you out there have similar experiences to share and advice to give?
 


my boy desat quite often when we started bottle feeding him but never in his sleep. I think that's quite dangerous.... actually I thought our babies need to be clear of desat before they can be discharged? That was what happened to my boy. He was to discharge in a few days as he didn't have any desat then ... nurses were telling us the good news and then one fine day when my husband bottle fed him, he desat and its backt to monitoring again. After my boy was discharged, I suspect that he actually desat when we were feeding him because he looked a little blue but we cannot be sure cos' we did not have any machine to prompt us. So we stopped the feeds and burp him. He was okay after that. We also bought a baby monitor (very sensitive) to monitor his movement and heartbeat. So that helps. Is your girl still in NICU or SCN?
 
I think it depends on how much your baby is desatting. If baby goes down a lot, like down to 80s or even 70s, that's apnea. Almost all babies outgrow apnea by 40 wks. But desat while eating is quite common. One kk doc told me that everyone desats a bit while in deep sleep, ie going down to 94/93, then rapidly coming up again. My boy is still on spO2 monitor, and I see him going down to 93-95 for an hour every night. was told it's normal.
 
My gal desats during her feeds.n that's e reason y she can't b removed from CPAP.other than that she doesn't haf any desat.

Bonnystar, ur gal on CPAP too??

Nurses told mi to be patient and that she will not haf desats once she reaches full term..maybe that applies to ur gal too?
 
bonnystar
my boy used to desat too when bottle fed.. the therapist told us to pace in between.. when he discharge, we had to continue to pace for him at home too.. but will overcome very fast.. like wat lilac say, i thought if they have desat, they cant discharge and i thought they can oni discharge from SCN? at first the doc wanted to arrange him to discharge after 4weeks stay but coz of his desat, he got to stay for another 2 weeks..
 
We got the apnea monitor I think angel care brand? But Only used it for a short while, found it too sensitive... Actually when discharged the nurses said that is not necessary, cos they only discharged our bbs when they are ready, meaning no more machine to monitor their heart beat or O2 level.

When you guys say desat, meaning you saw it happened or the nurses recorded down and inform you? Is it different between apnea and desat?
 
try nt to feed baby when they r v hungry. just liek adult when drink to fast, will choke....

my gal turn blue a few time during her feed, we have to stop n tickle her feet, to make her cry... there r times i avoid visiting at feeding time, so i can avoid feeding her. Like wat Jagiebaby said, pacing is important, tt need a lot of practise.
 
Just to add my thoughts. When our warriors stop breathing, this is Apnea. Once there is no breathing, no oxygen intake thus desat will happen. For preemie, the normal SPO2 level is set from 86% to 96%.

Apnea normally happens when they learn to bottle. When our warriors desat, their lips will turn purple very fast and it is really obvious. Stop the feeding and immediately pinch their feet. Once they start crying, their windpipes are open and they will start to breathe again.

Most of our preemie has this issue because of poor coordination between drinking and breathing. Doc will some give caffeine to reduce the chance of Apnea from happening.
 
David, my gal's case is she is still feeding via e tube n e desat occurs during feeding.n cos of this e docs still wan her to haf e CPAP on.docs also suspect that e brain is not developed yet.my gal is gonna b 36 weeks Tml.is she slow on learning how to breathe on her own?
 
Hi Julbee,

Don't worry too much. Some of our warriors just like to take their pace. Please remember that you will need to rest & eat well. Only with a healthy body & strong mind, you are then able to fight strong with your gal.

On the other hand, did the DOC suggested to do scanning on your gal brain. This is a usual procedure for Premmie on day 1, day 30 and I can't remember following scanning duration.
 
lilac, my daughter is in NICU and the doc said that she will not be discharged so soon. she needs to be clear of desat/apnea for 3 days before they can discharge her.

julbee74, my daughter used to be on CPAP. she was on it for about 3 weeks before it was removed.

Thanks all for the advice. i guess i got to learn to pace my baby and watch her instead. cos when feeding at the hospital, i kept looking at the monitor and any decrease in the oxygen % makes me panic.

my girl just had her eye exam too. she was said to have stage 1 ROP. i hope that it will not become worse when we bring her back for her review with the eye doctor 3 mths later.
 
David> they suggested doing a MRI for my gal next week.I m better these days but now it's waiting game now.I get kinda frustrated cos e docs also not doing anything.I feel helpless when I see my baby.

Bonnystar> it will b 3 weeks le for my gal this sun..she is still e same other than her wt gain.
 
Hi, julbee74,

I think its better for babies to do the MRI whilst they are still in the hospital..it wld be more convenient for you...

my preemie was born at 24wks at 750 gm and had his MRI taken whilst he was still at kkh....lidat it can be deducted fm medisave..not only that, it saves the trouble of bringing the child back after discharge to do it and after MRI the kid needs intubation etc..

Dun worry...take care..anythg, do share wif us here..

btw, my preemie is turning 5 this year already
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and has been thru alot of wat the other preemies have gone thru

be brave and strong
 
Costa>thanks for ur encouragement.in icu I see other doctors who r always taking care of other babies.my gal is often left alone. I can only hope tat she learns how to breathe n how to swallow her saliva.how long that will take nobody knows...
 
julbee, I agree with david. I recall the times when I visit my boy and when the nurse said "mummy is here. mummy wait, ok? I go get the doctor" My heart sank cos' subsequently doc told me that my boy needs to go for operation due to his hernia. another incident was when he needed blood transfusion and the doc also spoke to us. So better not to have the doc come. Just ask the nurse when you visit cos our baby has a very detailed personal file.
 
David, lilac > I really Duno how to b positive.I know many of u here haf been thru Alot n our babies r warriors. Each time after visiting my baby my heart aches n I feel worried.every feeding she has a desat. Nurses n docs say she Duno how to swallow her saliva n she Duno how to breathe.then Wats next? We Duno. Some docs comment tat by right she shld know how to do both things already but by left she can't! How??why?
 
julbee, i don't know either as in why your gal still does not know how to do both. Its just like how i don't know why my boy was premature; why my boy needed to go for surgery; why i needed to attend class on CPR in case my boy desat at home; why we have to keep going back to kkh for reviews. There are alot of "shoulds". My boy "should" have been a term baby; he "should" enjoy his 1st month celebration instead of being in the hospital. I worry too when nate started bottle. He desat a few times. I came to this forum to vent and to share my panic.... and the wonderful daddy david and other mu8mmmies encouraged me tremendously. Julbee, perhaps we will never know why.... but I certainly know that God has a purpose... as i look back (that was probably 8 mths after nate was born) that i realized the inner strength that i never knew i had. Its easy to say all these now. But when my boy was in NICU, i was frustrated and angry too. And it is normal to feel that way. Uncertainty often shakes us. If you need to talk, let me know. I will PM you my cell number.

Be strong for yourself and for your girl.
 
Hi Julbee,

I agree with lilac. There are many whys, too many to count. I was about to lose both my wife and my daughter. I beg God to trade my life for theirs. What have I done to make them suffer so much. My thoughts was so dark during that period. The journey to visit my wife and daughter was tearing my heart with every step I took. At the junction to WICU & NICU, which one shall I go first. After every first, I would find a corner to burst out. Seeing my love ones on needle, tube, wire and monitor was never a easy moment. After 2 days of really dark thoughts, I talk to myself, if I fall, my family will be gone, I cannot continue to live in sadness, misery & fear. I snap myself out of the why, why & still why. With the wisdom from the might one up there, I shall be the guiding light for my family through the valley of the unknown. We shall fight brave & fight hard, we shall fight every moment without any regret. Although our warriors are small, they are very sensitive to our feeling. Do not, I say again, do not bring your sadness and down feeling the very moment you step in NICU. They will feel us, they will give up fighting if we feel down and hopeless. Turn up that warrior in you when you talk to your gal. Speak only the words of life, the words of fighting brave & strong, the words of encouragement. Fight Hard, Fight Brave, Fight Strong.
 
Hi Julbee,
I understand how you are feeling. In my own case, when I saw my 990-gm baby, small and frail and helpless in the NICU, with so many tubes and needles, a lot of thoughts haunted me initially - Why me? Why my baby? I am a good person, what did I do to have this happen? And then I realised that there is a lot of suffering in the world and we humans have to share it all. What have I done to deserve a perfect life? Why should I expect a perfect life when my fellow human beings have to go through so much pain? In the end it all comes full circle. I could either sit and cry every day or I could be strong and brave and positive, especially when I am near the baby. I am taking the second option because that is what will help my baby. Your little one is fighting hard at her end, don't let her down by giving up or being depressed. I had only heard it from David and the other mommies here, but now I am convinced that how I feel really does affect my baby.
I hope you feel better soon.
Hugs,
Viman
 
Hi mommies,
Question on EBM again. Did you have to throw away a lot of the EBM while your baby was in NICU? I am expressing at a much faster rate than my baby is consuming the milk. She takes in less than 100 ml a day and I express about 500 ml. The NICU freezer has some 70 bottles and my own freezer is also filling up fast!
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Any suggestions on what I can do? Is there a breast milk donor programme in Singapore?
 
viman, u can store yr milk wif the hospital..upon discharge then take it back...even after discharge, they can still keep for you for a while...

hp this helps...

julbee,

i dunoe wat i can say to make you feel better..we all hv been there and done that...its understandable why you feel down..there are alot of what shlds and what ifs?but i think wat is most impt is to think of what you shld do now to make everythg a positive experience for yourself...yr kid can feel your vibes..no two preemies are alike....can tell you my son stayed in hossie for 5 months...but after a while, i tot its better for the kid to be fully well before coming home..rather than you panic when at home right...my kid is now 5 years old..those thgs that i tot he cldnt do, now he also can and he was discharged wif tube feeding and also had bleeding in his brain....now hes just like any normal kid but perhaps more naughty and has some minor issues here and there but generally every thg is okay...hope that he can inspire you and yr child to be strong and brave and be positive..
 
Hi Julbee,

I had twins, both at 650g and 938g @ 25 weeks. One month later, I ended up with one since my elder twin passed away. We made the decision to let him go since he was suffering a lot and doctors were having very pessimistic about his condition. We struggled to make this decision and it was the hardest moment in my life. Few days after he left us, my younger twin went for his PDA operation (when he was only 800g) and his heartbeat stopped after GA given. Luckily the doctors brought him back! The op was then rescheduled to few days later and I had to face it alone because my husband got to go back to work in Shanghai. You could imagine how screwed i was. I asked the question "WHY ME" like thousand times. I kept asking what went wrong?? But i didnt have answers. I have always been a healthy person, why would this happen to me, to my babies? I guess we will never have answers to this, and it's pointless to think about questions that will never have answers, isnt it? So at the end, I stoood up again, and be strong for my younger Twin Xavier. I make sure i give him the best support by providing breastmilk as much as I can, I will go to NICU everyday to express breastmilk to make sure he has the freshest, I tried to change diapers for him/feed him/hug him whenever i was there, i sang for him, i talked to him. Be there for him.

Your girl can feel you, really. Pls be strong for her! JIayou. Before you know, she will be home with you
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Viman,

I used to have 1200ml a day and after 2 months, the nurses refuse to keep my EBM as i occupied too much of their spaces, hehe. My own freezer was all full too. I tried to give away, but generally most ppl are not very acceptable about this (in NICU, it's not a practice they encourage). THrowing away is totally sinful ( i did throw about few weeks supply and I felt horrible!). At the end, the nurses advised me to buy deep freezer which I did, and I am so glad that I did because my supply dropped a lot later! For freezer that lower than -18 degrees, you could keep it for 6-12 months.

You could take a look at the this website http://www.llli.org/faq/milkstorage.html They have guidelines on the storage temp and duration.

My advice is, if you do go to NICU everyday, you could express once in NICU and let the nurse use the fresh BM for the day. I tried to provide fresh BM to my boy everday until he was discharged, as advised by the lactation nurse. After he was discharged, I brought all the EBM home and stored them in deep freezer (these EBM i tried to use them within 3 months since they werent always under the same temperature due to transportation). I always tried to give my boy fresh BM until my supply dropped half year later, I started using the frozen EBM + my fresh EBM everyday.....By doing that, i managed to BF for 14 months. It was all worthwhile!

Happy Breastfeeding!
 
oh btw, deep freezer, I bougt mine - Kadeka Freezer @ carrefour for about 200-300SGD. I had 2, sold at good price after using it for about a year....

pic as attached:
5326712.jpg
 
Costa,
Thanks. Just wondering if she will get to the EBM before it expires... Can't imagine throwing it...

Jas,
Yeah I am doing that too. Every day I give the nurse 100 ml of fresh EBM. The rest I freeze. I am just wondering if baby will ever get to the frozen milk before it expires, looks like the current day's batch is more than enough. But I had not thought of supply going down later... Hmm maybe I should get a freezer too. Thanks for the tip!
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Ps: Wow, you had 1200 ml a day?? Very good supply!
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I get 600 max and it's so painful to even get that. By the time the nipples recover from the soreness, it's time to pump again.
 
viman,

i think can..under deep freeze in hospital can keep for long time..if not later u can bring home

thk the fridge that jaz recommended is good..my hb bot the type for hotel use hahaa..not so good ..
 
viman, i threw away the EBM that were kept at the hospital because I simply have not space.... din think of buying a deep freezer too. I donated some to my neigbour cos' our kid were around the same age. But i still threw away alot.... even after my boy was discharged... I think close to 60packs of 120-150ml cos' really not needed as my son was not drinking that much... sigh. But think of it as a good problem to have =P
 
Viman,

When your baby grows older, her intake will increase to 900ml or above. Then definitely she needs the extra supply. My supply dropped to 700ml half a year later and it wasnt enough for baby Xavier as well. After i got back to work, it dropped to 300ml, then i regretted throwing away a lot of my old milk...

The nurses in NICU called me MILK COW because of my supply....I didnt know why i had so much too. haha. I didnt do confinement, didnt drink much soup, jus pumped normally.... I was a born cow lah..hahaha..

Costa,

I feel like a freezer salesman, hehe..
 
jaz,

freezer salesman...?haha no lah..u are right..this pdt very good..worth buying...

i just pm you ...u got it?are you still staying in shanghai?
 
David,lilac, costa , viman & jas > seeing all u guys so positive really makes mi feel ashamed. I shld b more positive.docs told mi they haf done all the things they can for my baby n all tests turn out well.the last one is MRI n they feel that that will probably show nth cos her ultrasound shows no abnormalities. It's now really waiting.. I guess I m too impatient n too pessimistic.. I will rem ur words n try..thanks!!!
 
Julbee, dun feel ashamed..nothg to be ashamed about...like wat lilac said.....dun deny yrself yr feelings..i would be telling you lies if i said i din cry when my kid was at nicu and gg thru so much...i cried my eyes out and was very depressed also but was advised not to as it pbly wun help in anythg...now on hindsight i can tell you to be positive but you really hv to be as nothg else can help you except being hopefull and positive for yr kid..

so stand tall, be brave...

like what you said, all tests turned out well for yr baby right?my son also took mri, did i tell you?and he had bleeding in his head and it was Grade 3 and Grade 4 is the worse......but the MRI is just to tell us that hopefully everythg is okay..so dun worry too much...

do share wif us yr worries so that we can help you ovecome it..
 
Julbee,
Really glad to know of the good test results! Fingers crossed that everything else will be all right too, and she can go home soon. Great to see that you're also feeling better. We all just gotta hang in there and cheer our babies.
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Hi all,
The doc said my baby will need surgery for a small hernia. They will do it when she is 2 kg, she's 1.4 kg now. I have read that hernia is very common in preemies, but I am not sure about the actual surgery itself, except that they will do it under GA and the incision will be really small. They said they will operate on both sides. Am a litle scared. Anyone with experience in this? Any risks?
 
viman,

Both my children had hernia ops. My girl's was minor, also bilateral. They managed to do an "epidural" kind of anesthesia and so did not have to put her back on CPAP. It was done while she was in SCN, and she recovered in a few days. The incision is small..maybe 2 cm on either side at first. Now its really not noticeable because its in the bikini line.

As for risks, if they are just stitching the muscle together (which sounds like the case for your girl), then no real risk of damaging her internals. If it's an emergency situation and they have to push the intestines back in, then yeah, there's some risk of damage.

There are the usual risks of surgery and anesthesia -- infection, having to go back on CPAP/ventilator, possibly staying on CPAP/ventilator for a few days. Can't recall what else. The surgeon and anestheologist can answer your questions in detail.
 
Hi. I like to seek some advise. When. your babies were discharged, how did you bring your babies home in the car seat as preemies are usually smaller.
 
Hi qster,

My wife carried my daughter in her arm when we brought her home. Although we have a baby seat, like what you have said, she is too small for the seat. For almost a year, we never bring her out except for hospital visit. We only try to used the car seat recently.
 
qster
i carried my boy in the car loh coz like u say he's too small for the carseat. our carseat got an additional removeable pad so he could use the carseat abt 1 month later..
 
hi, i like to know what are the symptoms, signs that a doc will think a bb has hernia? vomits, refuse to eat or any other signs displayed?
 
David/ Jagiebaby,
May I know how big is your baby when you bring them home?

We are preparing to bring my Twin #2 home this weekend too. He is about 2.6kg today. By Friday or so, he probably 2.8kg. And I was planning on the maxi cosi infant car seat to bring him home. I'm not sure if is safer to carry him in the arm.
 
Hi Chewy,

Congratulation. Home sweet home. When we brought our princess home, she was only 2.12kg. If I can recall correctly, this is the 1st time in my life which I drive with extra extra care and caution. Baby car seat is always safer but it is even more important that the driver take extra precaution.
 
Many Thx David,
I looking forward to it too for him to come home. He was supposed to come home on 9 April. But refused to drink on bottles suddenly. And with his kor kor going for closure of stoma & laser for eyes ( ROP stage 3 in one side of his eye) last week. I wasn't ready to bring him home on tubes. Now that I'm ready to bring him home regardless of tube feeding, he start drinking on bottles .. So it's all good now !!!

YES! I will remind Driver Papa to be extra extra careful too!

Hope your girl is doing well
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Congrats Chewy, u must be excited! I still remember very clearly the day i brought my son home, he was only 2kg, and i held him tightly from NUH to Changi...long drive!
 


wotalit, the most obvious sign of hernia (for my boy) was a bulge near his groin area. It was especially obvious when he strains himself while crying.

Chewy, congrats!! Well done. Baby is finally coming home. It will be tiring but satisfying because baby is finally home =) My boy was 2.2 kg when he was discharged. We could have put him in the car seat but I carried him.... because he is so precious to us. My hubby drove quite carefully too. Hee...
 
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