7 weeks and still on vent....

[BrittLeblanc]

It's me again.. Yesterday I forgot to mention that when Riley putted his breathing tube they have to pump oxygen to him until they got all of the fluids out of his belly while doing this he turned blue which was a sign that he still needs the vent due to his chronic lung disease. I'm get worried that it is taking so long for him to get off the vent but the doctors keep reassuring me that its normal. Some babies just take longer than others but I'm still stressed that he is still unable to get off and it now 31-32 weeks gestation and almost 2 months. Anyone else's lo have this trouble?

 

[divadexie]

Oh hun I can't offer advice but ((((massive hugs))))
The doctors will know what they are talking about, it does depend on the baby some will come off the ventilator quicker than others.
But- I would say, the less effort your LO is using to breath (as he would be on the cPAP) the more energy can go on getting over the cld.
I am sure once he gets stronger and his lungs get healthier he will be much more able to come off.

 

[25weeker]

Unfortunately an extreme premature baby at 31-32 weeks will not be at the same stage as a baby born at that gestation so it is normal for some babies still being ventilated. There was a baby beside my lo who was ventilated until 33 weeks as he had several failed attempts. A few weeks of coming of the ventilator he was getting weaned off cpap.

These lo will do things at their own pace but hopefully it won't be too much longer

 

[vermeil]

Yes, every child`s needs are different. My own 27 week preemie had only a mask for 10-12 days, yet the other 3 babies in the room were all on high frequency - all of them full term. Then a few days later he went back on cpap (ie was intubated), then back on high frequency himself. He`s been on each of the three systems multiple times. Preemie lungs go through many stages.

 

[BrittLeblanc]

Thanks everyone this have given me much hope. My little Riley has had about 3 tries and failed all. I was starting to get very worried because he hasnt be able to get off. Im really hoping within the next week that he is off the vent. He still has me worried and scared.

 

[shreedhara12]

Hi there,

As rightly stated earlier each baby has its pace to cope with. My LO was on Vent for 5 days after birth and later doctors tried to shift on Cpap but it was a grave error as she managed to breath for few hours and all of a sudden her oxygen level and heart rate went to 20s and she almost turned blue.

Thanks to the sister in charge who triggered her heart by a gentle press and abundant oxygen supply. Its been 2 weeks now that she is able to cope with nasal cannula and Cpap while the baby next to my daughter has been on ventilator since 2 months now.

It is a test of patience and one have to go through.

 

[vermeil]

yeah.. I know how heart wrenching it is to walk into the baby`s room and see a bigger machine, or the frequency or oxygen level has been turned up. I try to keep positive by thinking `this is what he needs right now, this is what will make him heal and grow.'

 

[BrittLeblanc]

Yes and you are so very right. They are now trying to slowly wean his oxygen down he is on 30 so its not to bad. The vent settings that he is on is what they call "rider settings". The doctors explained that while he is growing they have him on very low settings to allow him to grow alittle bit more so they can get him off. I asked how much longer they expect him to be on the vent (even though no one really knows) I just felt the need to ask. I sometimes feel so hopeless and worry to myself if he will get off soon so we can over come some of the other little things along the way to him coming him.

 

[monst_18]

Hello

Alfie was born at 26 weeks and was on Cpap no worries then they had to ventilate him so he could have an operation and he was on it for ages, going blue etc its hard to see your baby that way, He then went back on Cpap and had to be intubated once more for another op! But the second time he actually benefited from it - streching his lungs..

Just want to give you reassurance (and like the others have said they all take their own pace) Alfie came home at 15 weeks on home oxygen due to his Chronic Lung Disease - i was so worried but it was easy! and now at 9 months later ( 6 corrected) he is completely off of Oxygen and doing so well!

Good Luck xxxx

 

[BrittLeblanc]

aww thats very reassuring. I'm happy to hear your lo is doing great. Riley has chronic lung disease as well . I'm praying and hoping that he doesn't have to come home on oxygen.

 

[monst_18]

aww thats very reassuring. I'm happy to hear your lo is doing great. Riley has chronic lung disease as well . I'm praying and hoping that he doesn't have to come home on oxygen.

Ah i hope he doesn't too, but if it does happen its so easy and you can always
PM me for info.

xxx

 

[25weeker]

My lo has chronic lung disease as well and didn't come home on oxygen.

Any baby who is ventilated more than 28 days or requires oxygen after 36 weeks gestation is classed as having cld.

Hope ur lo is off the vent soon

 

[BrittLeblanc]

Thank you both very much they are now starting to wean down on his oxygen slowly they did lower it to 28% this morning but when factuality made rounds she wanted it back up to 30% because she felt that the nurse were weaning to fast and not allowing his little body to get use to the lower oxygen level being that he was on 35% Sunday and weaned it to 30%. So they put it back at 30% to allow his body to adjust so that way they can continue to lower the oxygen instead of taking steps back by weaning to fast.

 

[shreedhara12]

It feels a milestone reached when a stage passes; Its 20 hrs almost since my LO is on nasal cannula with <0.25 mark Oxygen pressure from the main line and she is doing good (except when she is on her tummy).
She has reached this stage after 5 loooooong weeks and unfortunately she will be back on vent from tomorrow(she has a PDA ligation) for another week possibly.

It is stage sometimes, some kids cope early and some do not and take their own time. Every little fighter has his/her day at some stage to be off from all artificial care facility and be back HOME.

 

[BrittLeblanc]

aww Im sorry your lo is getting back on a vent its good its because of the surgery though not that he has to be. They mention something about giving his belly a few more days to make sure its ok before they try CPAP again. I'm getting so impatient

 

[Agiboma]

You ladies are so encouraging i wish you all the best