Desperate and need encouragement

I delivered my daughter at 26w exactly. She was incubated immediately and put on the conventional vent and jet. She was on the jet for about 3 weeks before they put her on the nava and she did really well on it. She had 2 accidental extubations, the first one was when she was a week old and I was holding her for the first time. They had to bag her and reintubate her. Second time was maybe a week later when she pulled her tube out a little and coded.

She had no health problems when she was born thankfully except for a pretty large PDA. She had a piccolo procedure to fix it when she was 5 weeks old. It was successful and her recovery was going extremely well. She was gaining weight quickly and the doctors were so impressed at how quickly they were able to wean her on her oxygen. A week later at 6 weeks old they told us they wanted to try to extubate her and put her on the non invasive nava. It didn’t go well and they had to reintubate again after an hour.

Ever since her last intubation she has been way up on her oxygen. Shes been at 100% oxygen for a few days now. Just the other day we got the most terrifying call. The doctor told us that she was all the way up on oxygen, receiving nitric oxide, and was still desatting. When we got there she was in the 50s and 60s. They started her antibiotics and dart but told us that they weren’t quick fixes and she was very very worried about our daughter. Thank God her oxygen gradually rose throughout the day and she was back up in 80s and 90s. They told us they found bacteria in her breathing tube and are treating her for pneumonia. So now they are saying she has pneumonia, CLD and pulmonary hypertension.

I am so scared and confused. I am worried about her lungs and worried about what the future looks like for her. I feel like the doctors aren’t being completely honest with me so I don’t get hysterical maybe. I just don’t know if she will have long term damage because her oxygen was low for so long. I’m also worried that she’s been incubated on the vent for 7 weeks now. I’m just wondering if anyone has been in a similar situation and how their LO is doing now. I could really use some encouragement.