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

[Agiboma]

glad to hear feeds have been restarted and congrats on the kangaroo care it is truly amazing and once your LO gets used to it they will totally always want it, my LO is doing good

 

[mumof2kids]

Glad to hear things are going well. My baby is stable and slowly getting somewhere on the vent, just hope nothing hinders it again, still having secretions though. I got a chance to do all the cares for him yday as he is much more stable. How's Micah doing on c-pap?

 

[Agiboma]

cpac well its up and down sometimes he is on room air which is 21% and other times he goes up to 27% so its up down i hope he stays on room air soon so we can begin to cycle

 

[mumof2kids]

Thats good news Agiboma... my lil one needs about 22-30% o2 but other vent issues have not resolved totally. The consultant has started on some meds to clear the lungs in preparation for steriods but to be honest me and hubby have not decided whether we want to use steriods on him yet, it is a big risk and very scary. His PDA seems closing or closed as they checked and could not find any mumur now which is good news. Milk is going ok steadily increasing every day. I'm just not sure re steriods. need some advice before me and hubby can make such a major decision.

 

[Agiboma]

what steroids are they planning on usuing do you know the name so you can research it on reputable sites?

 

[mumof2kids]

I don't know the name I'll find out when I go tonight my only concern is that it effects the brain and development of the baby it also slows weight gain too. That is what is making me so confused in what to do.

 

[mumof2kids]

Got quite an update from the consultants today and I'm feeling very upset not to mention im crying practically every minute. My lil one is still ventilated and although they are trying to wean he is just not making progess. His PDA was checked and is still open same size as they last checked but its not flooding his lungs. We were told by sunday he will start the steriods but his lungs are so bad that it will take him ages to come home and when he does he will definitely be on oxygen. I just feel so heartbroken that he won't be coming in and around his due date which is in 5/6 weeks time. Not to mention on oxygen for a very long time. She started saying they have some babies that are 1 years old still at hospital for the same reason which doesn't give me any confidence. I just want my baby home and it keeps feeling like its a distant memory. Don't know what to do. My family life is suffering I'm finding it so hard to balance between hospital and my daughter who has started school. I don't know how much more I can take.

 

[Agiboma]

Ohhh my I can see you are overwhelmed not sure what to say really I hope it gets better soon why are they keeping him so long? Won't the steroids help with ue lung issues? Well hopefully once he leaves the hospital he won't have to go back I really do wish you all the best and positive energy for your family. Is there someone that can help you with your daughter to try to linden up the stress?

 

[mumof2kids]

They said his lungs are so damaged that it will takes ages for him to recover he has CLD. Also when he will move to cpap the cycling which u were talking about will take ages because they don't want to over stress him so they will go very very slowly. Also when he was inside me the blood flow was not good to his gut so they won't give him 2/3/4 hour feeds and when they will they will be slow cos they don't want him bloated all these things together with his lungs means he won't come home soon. I don't know what to think.

My husband says try and not pay attention to how long as they didn't even give him a chance to survive and here he is. They said he will have problems with his gut and touch wood he has tolerated his feeds. So I'm trying to look at all the positives and thinking we won't know until he moves to C-PAP how he will behave. But as a mum you always still stress and looking forward to his due date and expecting him to come home.

My parents are godsend with regards to my daughter but I just feel I'm not spending enough time with her and feel like I'm neglecting her. She has started school so I have even less time with her.

Steriods may help and may not... no guarantee in anything is there? Today they said his infection levels are up so he is on antibiotics again and they are still going to try and wean down the vent pressures again and if he settles they may try and extubate him but its all on him.

At the moment I just don't know what to think... my family are so supportive but with him in hospital now I'm just feeling very down and depressed.

 

[keldac]

oh i know it's so hard when you can't see an end in sight. i hope he comes home sooner that you expect xxx

 

[25weeker]

sorry to hear the prognosis from the doctor. Remember they always give worst case scenario. Hopefully your lo will defy them again and goes home sooner than they anticipate.

Your daughter will be loving getting spoilt by granny and grandad. It must be difficult trying to balance both but it won't be forever and then she gets to have fun with you and her little brother.


Thinking of you at this difficult time.

 

[pink.crazy]

Let me just share a little story with you.. during my LO's time in NICU there was another little boy - he was born at 24 weeks and didn't get steroids.. he was ventilated for a very long time, had surgery for his PDA, laser surgery on his eyes, eventually went onto CPAP and remained on it until 15 weeks old, then went onto low flow. Everything then happened all of a sudden, he had his oxygen off, 2 days of monitoring and then 2 days later he went home. His parents were amazed when it was mentioned!! He went home just 3 weeks after his due date. They were also told he'd be on oxygen - but he went home on nothing!
Babies are amazing.. and seem determined to prove Dr's wrong, as your lil one has already done before!! Stay strong honey, it will be a long road but so worth it xx

 

[Agiboma]

babies are very difiant and they can surprise you, so even thought the doc's have given you their opinion your LO may just prove them wrong. Stay strong your LO will come home to you i know the NICU experience is hard i am still going through it myself, but just keep in mind that one sweet day your LO will be home where he belongs

 

[mumof2kids]

Thank you so much for all your kind words and positive thoughts, it made me cry that people on this site are so supportive. I will keep these things in mind and every baby is different you never know what will happen next.

My lil boy has yet another infection his CRP levels are up slightly so they had to put back the canula and give him some antibiotics. They also gave him a blood transfusion not because his HB was low but to increase o2 in his body which will give them more of a chance to wean him off the vent. Also he is having physio twice a day to get rid of secretions and is on duirectics to make him dry as they want excess water out so he is losing weight at the moment. I'm just praying all this works and he gets a chance on C-PAP.

Thanks again for all your comments, they are appreciated.

 

[nineena]

Oh hun ive not been on for a while to catch up am so sorry that your LO is having these problems but as others have said these babies are unbelievably strong and do amaze everyone with what they can achieve. We had to go back in hosp last wk with Ella and were told she'd need tube feeds on a pump over an hr coz she wasnt tolerating feeds and told it'd be a good few weeks before we came home. 2 days after being told this she'd gone back to full oral feeds and came home yesterday as if there's nothing wrong.

I really hope and pray your LO starts getting even more better really soon so you can have him home with you. hugs xxxxx

 

[mumof2kids]

I'm so glad to hear your back from home with your baby. That must have been a traumatic time to go back. Luckily all is ok.

I know every baby has their own pace but I just feel we are stuck at one position for so long and now with the infection it means he can't have steriods nor PDA surgery if they decide. They have not weaned him off the vent either today so it's basically another day gone.

His vent is neither getting worse nor better. They could only wean his rate for the past 2 days not the pressure which they need to decrease by 2.

On a good note he is showing lots of signs of personally wanting to get off the vent. Moving his head alot, focusing on me and hubby and smiling, his eyes are just gorgeous and tell the whole story. He keeps taking his tongue out wanting to suck. He is on full feeds for now. BP is getting measured manually rather than every 2 hours. He maintains his temp.

Just please pray for my baby that things start to move forward.

Good luck to u all and your babies! x

 

[Agiboma]

i will pray and send positive energy to your LO and your family, stay strong mamma and know where always here

 

[mumof2kids]

Todays update is as follows, they planned to extubate my lil boy and see how he goes but before they did anything he self extubated himself and no one was ready they still tried him on C-PAP but he failed with in minutes and is now reintubated. He is back on the convential mode of vent with higher pressures and rate. They also made him Nil by mouth.

I'm really upset.... I know the Drs did all they can and I'm glad that they tried him on it but I'm not sure whether its because they were not ready and did not prep him is the reason he failed.

 

[Agiboma]

My little one also did the same he self extabated a few times and they also tried him on cpac at the time his PDA was wide open so he did also fail we had a long history with cpac he was put on cpac 4 times until finally he was off for good so it's hard but I really believe my lo was only able to stay off cpac because of his PDA surgery that really helped him to progress but hang in there it will get better soon

 

[Anna_due Dec]

oh crap. That sucks. Well he's taken his step backwards so next step has to be forwards