23 week gestation baby and apnea

[CharlotteB86]

My son was born at 23 weeks + 5 days gestation and is now seven weeks old. He's still on the ventilator but is looking ready for cpap. However every time they extubate him he has a number of apnea on cpap requiring intervention which he sometimes doesn't respond to so he's quickly ventilated again. The longest he's lasted off the ventilator is 30 hours but during this time he had a number of long periods of not breathing requiring nursing intervention.

Yesterday he was reintubated again within 4 hours without any sedation as it was an emergency situation. I'd obviously love him to be stable enough to come off the ventilator but I just don't think he is, and it feels like his life is being risked every time they put him on cpap as he is often slow to respond to intervention and becomes very pale.

Every time he's put back on cpap I'm terrified of losing him in case this time he doesn't pick up with intervention. Does this get any easier?!

Any advice would be appreciated, thank you x

Hi op. Congratulations on your baby !

When you say cpap do you mean some breathing support through a mask rather tubed? Do the apneas happen when he's asleep or awake? Have you got much support on the unit (I know it varies hospital to hospital)

I know its super hard but try not to worry. Even corrected age baby is still very little and there's lots of time for things to change

Thank you for your message.

Yes they've tried a cpap mask and nasal prongs for him. The apnoea happens during both sleep and awake periods.

His latest head scan has also shown a worsening of his bleed, he has a grade 3 IVH on both sides. His consultant has now made a link between his inability to cope on cpap and his IVH which is quite distressing as we don't know what this will mean for his outlook. We don't know what to think really.

Yes the NICU have counsellors, I think I'll arrange to see them to see if that helps.

How is your son getting now? It all sounds very stressful, well done you for keeping it together

Hi, congratulations
My ds1 was born at 26 weeks very traumatically and he had terrible trouble coming off of the vent as they hadn't had time to get steroids etc into us - it took many months they ended up having to go painfully slowly as my son just was too weak to breathe on his own. He still has apnoea episodes until he was 18 months (uncorrected)
Have the drs spoken to you about the treatment plan?
I don't want to give false hope but my son had IVH's on both sides one was grade 3 and they resolved over time.
Take care of yourself.

Thanks for your messages. He had a cranial tap done this week to drain away fluid from his bleed. Depending on his next head scan he may also need a shunt but we're hopeful the tap was enough to stop the fluid building up again.

Since the tap procedure he's been having less apnoeas so they're planning to try him on cpap again in the coming days. It's been a week now since they last tried him on cpap and he's had a good weight gain so we're hopeful he'll be strong enough to manage it this time.

That's reassuring to hear about your son Mama1980, I'm glad he grew out of the apnoea episodes and hope he's doing well now.

That all sounds very positive! I really hope he manages without the vent this time.
My 1lb 2oz boy is now a 5'8" teen who ran a 10K just last week

How's he getting on @CharlotteB86?