Newbie had my baby at 26+2 what a roller coaster of emotions

[mumof2kids]

Hi all,

I spoke to the consultant on saturday and she said she can't even call it a failed extubation as the tube dislodged and he was gasping for breath few mins before and by the time they got round to C-PAP he was so tired that he couldn't even try so it was plain bad luck. Since then he has been having green bile in aspirate and vomited twice so again they have stoppped feeds since yday evening. And due to that they don't want to wean the vent so back to square 1. I'm getting so frustrated with the whole thing, not for myself but for him. I'm feeling so bad for him, I can't see him anymore with that ventilator tube. Feeling very upset right now.

 

[Agiboma]

Yes the vent can be very fustrating, my memories of it are still so fresh and very raw. Its indeed traumatizing, you can see your baby crying and you cant hear them, its a very painful sight to watch. But remember this is only for a time, i know that you cant wait to see you LO off the vent for good. But soemtimes it takes time and the steps back and fourth are so fustrating and heart breaking. But he will get off teh vent on day and he will come home with you one day, just keep that in mind, its my only comfort that helped me to get through the days in NICU.
Sometimes you just need to cry if tats what you feel like doing just let it out. One day the tears will become lesser and lesser and eventually they will stop. Im talking from my own oersonal expereince. Talk to your LO doctors i talk to them all the time, sometimes a few times a day i get clarificationa dn extra clarification on matters that pertain to my son.
I feel aweful for you and your LO, i will continue to send positive energy to you and your family, lots of

 

[mumof2kids]

Thanks Agiboma for your kinds words. I also read your post that your lil one will be home soon I'm truly so happy for you. I'm glad things are progressing fast and your lil one will be home where he should be.

My son had his eye test and shows that he has ROP now Stage 1 or 2. So they have to keep checking to see if it gets worse. There is not one positive thing I've heard in weeks. His weight has been the same for the last 3 weeks thanks to the suspected NEC, then no feeding, duirectics and now again no milk feeds! Vent is pretty much the same. And now this with his eyes. I know you all say he will come home but trust me it doesn't even feel like it will happen soon, or even his year. Everyone has a threshold and I feel like I have reached mine. All I do is cry and I'm not a crier at all I'm very strong and it takes a lot to break me down but I can't stop myself. Just need some good news and progress which isn't happening.

 

[Agiboma]

ROP is very common in Premies my LO has ROP stage 1 zone 2, its something they may outgrow so try not to worry to much about it. I know things seem so hard now but they will get better. Do you have a social worker @Q your hospital you can talk to. @ my NICU all moms are urged to get a social worker. I am in counselling with a phychiatrist @ my NICU for the stress from my pregnancy and this NICU expereince. try to seek help its ok to do so

 

[25weeker]

Hi I am really sorry to hear you are getting more negatives than positives I hope things start turning around soon. I know it's difficult but try and take some timeout for yourself, even half hour and read a magazine and have a big bar of chocolate! I ate a lot of chocolate in the 14 weeks my lo was in neonatal.

The big positive is your lo is still fighting and hopefully once the infections have cleared the move to cpap will be successful.

Take care xx

 

[mumof2kids]

I'm eating alot of chocolate I probably weigh more now than I did in my pregnancy as I was keeping really fit and lots of walking but now he is born I'm just feeling really sluggish and the lack of sleep is affecting me the most only 5 hours at the most. I think it's more certain nurses that bother me like the one yday that was looking after him was the one who does the eye test so she knows more about it, yet I had to ask her on the phone was it done and the answer I got was yes and then a big blank silence so I thought ok then i asked her "how was it?" I got "there were ridges I think its stage one or two I'm not sure". So I asked her a little more and the answer I got was come on Tuesdays and speak to the Dr. I was so worried I called my hubby and we were both stressing as the last four eye checks were clear. So in the evening when we went in we got a chance to speak with the registrar who kindly explained it in 5 mins and told us his left eye has stage 1/2 and his right eye was stage 0. I mean thats all she had to say... I don't know some of these nurses have bad attitudes and as a mother I'm not able to spend enough time with my son as I have my daughter at home so I'm trying to balance it as much as I can and I just need someone to speak nicely and explain to me. It's really annoying and frustrating. I really want to speak out but they are all of one cultural background and I know for a fact if I say anything they will all get annoyed and I don't know how my son will be treated. This is supposed to be one of the best hospitals in the country and the consultants are fantastic and some nurses are beyond helpful but these handful of them are really awful.

Anyways I think I've vented enough... my lil one started milk yday they started slowly due to green aspirates but thank god they have been coming clear for the past 2 days and now is on 4mls per hour working there way back to full feeds in the next 2 days.

Infection level is low now nearly all clear so antibiotics should stop tommorrow. They checked his PDA with echo yday and its still 2mm neither got bigger or smaller but he is not desaturating all the time unless he wants a nappy change and moves about alot but mostly its self correcting and oxygen is max 30's. So I think the consultant wants to administer steriods but I still feel he should be pushed one more time to lower his vent setting and have atleast a proper try to be extubated. If it fails then I would agree to steriods as it's not fair on him having this tube stuck in his mouth and he is at a age when he wants to turn his head move about suck etc.

So please tell me about your lil ones and the experiences your going through?

Also anyone out there with a preterm baby with CLD how was the experience on the vent, how did they get off, did they come home with oxygen etc etc. How did they over come it?

 

[mumof2kids]

Just a small update, since milk has begun he is growing very well. Still desaturations happening but not as much and self correcting with low oxygen. PDA still open however it is not effecting the lungs as much. Consultant has started steriods dexamethasone. I hope it helps his lungs. Otherwise his brain scans and other functions are going well. It was a hard decision to put him on steriods but we have no choice with his severe CLD.

 

[Agiboma]

glad to hear things are going well

 

[keldac]

Both my daughters came off the vent within a week by themselves. However my very good friend (since we met in SCBU 8 years ago) had a 23 weeker who just couldn't. At 8 weeks they gave her steriods and she was off the vent very quickly. Heather is now a perfectly healthy 8 year old with no lasting probelems

 

[mumof2kids]

I rang up today and the hospital said over night he was practically on air throughout the night and pressures have dropped, rate has been dropped and if all goes well they should extubate tonight or the latest tommorrow! I'm really excited and amazed as I was told it can take 3 days atleast to show results and its been 24 hours. Please pray that this is his time to get rid of the vent for good!!

 

[25weeker]

I will keep my fingers crossed x

 

[keldac]

wow that's great! I hope all goes well xxx

 

[Agiboma]

praying and sending you positive energy mamma

 

[mumof2kids]

Thanks to u all.

My lil boy was extubated yday 24 hours since steriods and for now is on biphasal and apnea mode. Can't believe it, i don't think it have sunk in as yet. They said he is on the highest phase on si-pap on air most of the time. He is having recession and putting alot of effort with his breathing so they only giving half feeds to avoid bloating. I can kind of hear his voice but its still not normal as I've been told it will take a long time as he was ventilated for so long. He was crying alot so they have given him a dummy and he is properly sucking on it. I feel terrible that i can't feed him on the breast or bottle and hoping he is not on c-pap for long for me to establish feeds but I guess it's all on his lungs. Please send positive thoughts that he carries on fighting.

 

[Agiboma]

postive thought for your brave little fighter, keep strong mamma

 

[mumof2kids]

My boy is still on the si-pap having only mild recessions milk has increased rest is TPN hopefully 2mrw back on full feeds. Me and my hubby got our first cuddle without the vent today It was the most amazing feeling ever I'm feeling so happy!!!

I can't believe my baby is using a dummy without it he keeps crying! Now next stage is to cycle and remove si-pap so I can start to feed him as he is 36weeks gestation and he is sucking very well.

Happy days finally!

 

[keldac]

I'm so pleased things are finally looking up x

 

[Agiboma]

YEAAAAA way to go LO, give him an extra kiss for me mamma for all his good work

 

[Anna_due Dec]

Yay...excellent news. What a rollercoaster. Hopefully the worst is behind you and you'll be bringing him home before you know it.

 

[mumof2kids]

My lil boy is very stable on the si-pap the nurses said his blood gases are very good. I'm so proud of him, he is still on air which is great news for him and his eyes. They did another eye test yday which my hubby was present for and luckily I was not as I don't think I would have coped. His right eye is perfect stage 0 but his left eye on one side is stage 1, so it's sorta regressed as I'm just hoping it doesn't get any worse. His milk has increased again and will be nearly full feeds very soon as they can't keep giving TPN via the canula. We another hold at night but he was crying alot I think it was his eyes it must have been sore from the eye test as I was cleaning it with sterile water and a gauze. But I rang them up in the morning and through out the night he kept on sleeping no crying

They have already reduced the amount of steriods they were administering to him by half.

Thank you all for your support girls its so nice to speak to people going through same or similar experiences.