CPAP Frustrations

[AmesLK]

Hello there, I am new to this forum, as I was on bed rest initially, and then quickly and unexpectidly had my daughter, Lily, Sept 13, 2011. Lily weighed just 697grams (Ilb, 9oz) due to IUGR, and my severed pre-eclampsia and HELLP syndrome. We have been so very lucky and blessed, in that the only problem she has ever had was an infection starting on day 12 (first and only time she was intubated, and that was for 6 days). And of course, her premature lungs. No bleeds, no NEC, no ROP as of yet, no PDA. I am just writing because I wondered what other people's experiences were with their micro preemie being on CPAP. Lily has been on it since day 1 (with the exception of the 6 days vented), and she is going on day 52 of life now. Her pressures are still high, at 8 (Peep) and they have been unable to wean her more than .5 of a percentage. Has anyone else been through this? She is getting bigger (3.5lbs) and is starting to pull the cpap off at every chance she gets. Its very frustrating, and with her being over 34 weeks, I really want to start on teaching her to feed....frustrated. Thanks for reading.

 

[heyyady]

Fist off, congrats on your beautiful tiny one! Lovely name, too!

My girls were not micro preemies (32+3) so I don't have much in the way of advice- just hang in there, she'll continue to improve- our neonatalogist told us that they go through some significant development changes around 34-35 weeks, which was very true with our girls and the others we saw in the NICU while we were there.

 

[Marleysgirl]

Hi there! And congratulations on Lily doing so well

My little boy was born with IUGR at 29 weeks. At around 5 weeks, they started cycling him with 4hrs on & 4hrs off cPap. They extended the time, he went backwards a little bit, then started getting the hang of it. I've just looked back, and he came off cPap at 7 1/2 weeks. They also switched him to a nasal gastric tube at that time (rather than oral) so that we could start trying to breastfeed.

 

[25weeker]

Hi congratulations on your little girl.

My lo was ventilated for 4 days then went on to cpap. An infection at 4 weeks meant she got ventilated again for 5 days. She was about 7 weeks old when they started weaning her and it within a couple of weeks she was off it. Her pressures were around 4 though.

It does feel like they are on cpap forever but hopefully it won't be for too much longer

 

[AP]

It seemed like our preemie was on CPAP for ages and tbh I think this was partly down to trying to rush her off it at 3 weeks. She was on CPAP for a long time after that.

 

[vermeil]

Hello! Congratulations, Lily is quite the cutey! And welcome to the best section of bnb, the moms here are awesome and very helpful

I can tell you`re over the 50 day mark, you know all the lingo already

My little guy was born at 1lb4oz due to IUGR also. He is a bit of the opposite, he had every single complication that exists (except no bleeds thank the heaven) but recovered well from them. He had a pulmonary hemorrage on day 1 and so was on high frequency oscillator (which is worse than being ventilated - huge machine the size of a fridge) for weeks, then he alternated ventilation and cpap for months. He was finally weaned off cpap at around 95 days of life.

I understand your frustration, I clearly remember thinking he would be on that thing forever, and never breathe room air!! When they would try weaning him he`d look so exhausted and weak it just broke my heart. But over time, very slowly he did get better. I remember holding him in kangaroo really helped - his O2 needs dropped from 65% to 35% that week!

Keep us posted *hugs* come on little gal, rest up and grow stronger!

 

[danielle1987]

my wee boy was on cpap until day 85 of life he, he then went onto nasal canula, he came home on 0.1litre of oxygen. I felt like he was on cpap forever, but all of a sudden they just take a turn and just seem to drop their requirement quickly and then off they come it. x

 

[Olivias_mum]

Hi hun, both my girls were on cpap for what seemed like forever. Grace was intubated at birth, then switched been cpap/sipap/bipap/vent/oscillator for the next 3 months and finally weaned to room air around her due date. She ended up intubated again at about 2 weeks corrected age for a few weeks and then the whole weaning from sipap/bipap/cpap thing again for a few weeks. We didnt start Grace on oral feeds properly until about 36 weeks as she was TPN dependant for quite a long time (NEC). I was really worried she wouldnt take to oral feeds but she did and is now fully orally fed xx