Never getting off ventilator

Our LO is 5 weeks old and has is still on the ventilator. She came close to coming off once at about 2 weeks and then got sick with pneumonia. They had to use nitric oxide and steroids to help get her down on her ventilator settings down. We were close to coming off again and she got sick with pneumonia again and now has an infection. It just seems like it never ends. It just seems like we will never see her get off. Has anyone else fought pneumonia and how long did it take to get rid of it?

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Congratulations on your baby girl! My dd was born @ 23wks and while we were blessed with no infections it took 21/2 mos to get off the vent! It felt like the longest 21/2 mos of our alomst 6mo nicu stay! Give you dd time & lotsa love! She'll do it when its time! Be sure to keep us posted.

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Congratulations on the birth of your daughter! My son was a 24-weeker and under a lb at birth. He was on a vent for about 3 months, and he did get pneumonia when he was about 5 weeks old. They caught it very early (thanks to one of the best nurses in the world), and they got him started on antibiotics right away. It took him about 10 days to really shake it.

As far as the pneumonia goes, I hope your LO gets better soon. As far as the vent goes, I agree with pp... she'll do it when she's ready. It's a long road, but it gets better! Good luck!

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My twins were 23 weeks, 5 days and my son was on a vent for 46 days. He is oxygen free since June! She will do it when she is ready and not a minute before. The NICU really tests your patience, but you have to have patience to survive. Goodluck.

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YES... we went through this with our daughter... she was on the vent for a little over 2 weeks... then off, then back on.. she got an infection they "hesitated to call pneumonia", but basically that's what it was. it took several days of antibiotics, and she was off within a week or so. the vent is a double edged sword- on one hand, they may need it to breathe, but on the other it really opens the door for infection. (that's why they took her off, then put her back on.. they really want them off as soon/long as possible.) she was on the cpap for about 2 months total. (out of 98 days.)

she ended up with CLD from the damage from being on the vent for so long. (though she could have had in anyway- we'll never know.) she was on oxygen (nasal cannula, coming home on 1/2 ltr) from september until just a few weeks ago. i felt like it would NEVER end.. having a baby hooked to cords! ugh.
but- i promise- even if it does end up that she's a cld baby, and needs extra help, it will eventually end and she will be cordless! :)
hang in there... ditto: mich0824 "she will do it when she is ready". so true!

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my son is a 25 weeker and he was born in July 2007 he was on the vent until about mid october then went to nasal cannula then he developed a very bad case of Nec and had to go back on the vent again it was really touch and go for awhile. then they decieded it was going to be awhile for the vent so they put a trach in and in about march he only had to have when he selpt and in January 2009 he didn't need the vent anymore. Then in June he got decannulated and in October he was closed. They always say "Never trust a preemie" they are going do everthing at their own pace. It will get better with time. My son spent 277 days in the hospital and because he stayed in so long I think his immune system is better for it. Just have faith and it will get better! Good Luck and GOD Bless you.

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No pneumonia, but several chest tubes inserted, then later removed to drain collapsed lungs, then cycts and holes in the lungs. Our 26 weeker had severe lung issues and was on oscillating vent for about 5 or so weeks, then other forms of vents and then the lower levels of breathing interventions for another two months or so to cpap and went home on oxygen. She was finally tapered off oxygen about 9 months after she was born. She's 3 now and still has episodic asthma. Here's the good news, their bodies grow new, healthy lung tissue everyday.

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We didn't deal with pneumonia - Natalie came off the vent and stayed off, but Ethan went back and forth from vent to cpap for quite some time, even going all the way back to the oscillator once. We had 3 chest tubes because the high pressure from the vent was causing air sacks to burst and collapsing his lung.
Yes, it's a long road, but you will make it - and only your daughter can decide when she is ready.
My twins were born at 28 weeks and will be two (actual) next month. Ethan came home on oxygen, but was able to come off completely by the time he was 6 months (actual).

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My son, born at 26 weeks, was on the vent for 6 weeks. He had pneumonia once. It felt like forever and we got our hopes up twice when they took him off and put him on CPAP machine, both times during those first few weeks they took him off in less then 24 hours. Finally at 6 weeks old he came off the vent, was on CPAP for 2 weeks and O2 for a year.
He just turned 3 and is doing great!!!!!

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My son spent 15 weeks on the ventilator. He spent a few months on the oscillator and jet and had pneumonia and repeated courses of steroids. He went from the vent to a CPAP of 16 and stayed on CPAP for many months before going to high-flow and then coming home on 2 liters.

Also, if they don't come off the vent, it's not the end of the world. Some kiddos go home trached. Weeks 5+ really get hard because the initial shock has worn off and the ups and downs of the NICU start to really get to you. I know it doesn't seem like it now, but it does get better.

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