44 weeks and still in the NICU

[Twinsmom]

Hi everyone,

My twins are currently 44 weeks gestational age and were born at 27 weeks and 5 days. My daughter has been home with us for a month but my son is still in the NICU. It's been almost 4 months and I feel like he's no closer to being home with us then he was 6 weeks ago which is breaking my heart.

His sleep apnea spells have been what's been keeping him in the hospital. He has 1 spell every 3-4 days, which resets the clock on when he's coming home. Has anyone else experienced apneac spells past term? His sleeping spells did go away for 2 weeks but then he was having bad choking episodes during feeding where he would turn grey and need oxygen. Now the choking spells are gone but apnea spells are back which makes me feel like we have gone backwards.

The doctors use to reassure me that he would grow out of it but because it's been going on so long i don't get the usual he'll grow out of it pep talk
anymore. They don't think its anything other then prematurity and beside the apneac spells he is doing really well. I am trying to be strong and wait patiently but going to the hospital every day visiting my baby while bringing in my other baby is taking it's toll on me physically and mentally. I am grateful he is doing so well but I just want his spells to be gone and for him to come home.

If anyone has had a similar experience with apneac spells happening post term, I would love to hear your experience.

 

[AP]

Massive hugs hun
Have they mentioned the possibility of reflux, this could be causing it?
xxxx

 

[divadexie]

Aww I can't imagine how hard that must be *hugs*
Some premies just take that little bit longer to 'get' feeding and my LO was having desats until about a week or so before she came home, she just kept forgetting to breath when she was feeding. But then one day it all just clicked and she didnt desat anymore.

with the apnea, feel assured that the hospital are only wanting whats best... I know of a few cases where premies have gone home with an apnea monitor and to me that would be worse than have them stay in the hospital for longer because it meant they think theres a chance it will happen again.


maybe get them at the hospital to sit down and have a chat and explain everything they are doing or can do, and discuss things like the possibility of reflux etc.

I hope he is home with you very soon xxx

 

[Agiboma]

Well the doc told me some premies can go up to 44 weeks to resolve these issues he will be home soon lots of

 

[Twinsmom]

Thanks for your responses.

He is on two reflux meds, domperidone and lansporal. I did ask if the last spells could be reflux and the nurse didn't think so because he was sound asleep and it had been three hours since his last feed. I can ask if there are any other reflux Mede he could try because I originally thought it was reflux or maybe hoped is a more accurate word....

 

[Agiboma]

ummmm it could still be reflux though cause my son had a spell due to refluxn@ 38 weeks it was 2.5 hours after his feed, and thats when he was started on reflux meds

 

[Fiestagal]

No advice but didn't want to read and run. Sending massive hugs

 

[nkbapbt]

Did he have PDA surgery?

 

[Twinsmom]

He did not have PDA surgery

 

[vermeil]

my little guy only left the hospital at 44 weeks. It took FOREVER for him to be weaned off that last bit of oxygen. By the end the amount was so small they had to use a special nozzle. But he did eventually breathe room air.

You`re on the home stretch!

 

[PrincessPea]

That last stretch is almost the worst bit because you know you are SO close to going home. Keep your chin up dear, Im sure your LO will be home very soon. Easy for us to say though.