My son’s 93-day NICU journey, 25+5 weeker with BPD, looking to connect with other parents (eye surgery today)
Our son was born on May 19th at 25 weeks and 5 days, weighing 600 grams, a little over a pound. My wife had preeclampsia that came on fast; two days before he was born we were just out getting a drink together, checked her blood pressure almost on a whim at a pharmacy, and by that night we were being told he might come months early.
He’s 93 days old today, and it’s been… a lot. Today, in fact, he’ll actually be in OR for laser eye surgery shortly, so this post is coming from a waiting room, in a way.
The respiratory journey: He’s been intubated and extubated five times. He developed moderate to severe chronic lung disease (BPD) and has cycled between the ventilator, NAVA, and non-invasive pressure support (NIV) multiple times. He’s had several courses of dexamethasone, plus a hydrocortisone bridge each time to protect his adrenal function, and nebulized budesonide for a while too, though his current hospital doesn’t use inhaled steroids, so that got dropped after transfer. Different centers, different protocols, apparently. As of today, he’s on non-invasive pressure control (NIV PC) at 14/10 pressure, with his FiO2 running mid 20s% (24 to 26%). The team’s been slowly, carefully weaning his pressure, trying to find the minimum support he actually needs without causing bigger swings by pushing too fast.
Other stuff along the way: A couple of weeks ago we transferred him from our original NICU to a hospital closer to where we’re building our life as a family, one of the better parts of this whole thing. He’s had a hernia (with reduction), a hydrocele, and from being intubated so long, some vocal cord movement issues that are being watched. He’s on iron supplementation after five blood transfusions. And this week his ROP (eye disease from prematurity) progressed to Stage 3 with plus disease, so today he’s having laser eye surgery, under light anesthesia, intubated for the procedure, with a real chance he comes back to the unit still on the tube depending on how his airway looks afterward, given his history.
Through all of it, he’s growing. He’s over 2.2kg now, from 600g. He roots around for his soother, recently started tolerating skin-to-skin again after a rough patch, and the nurses keep telling us how much of a fighter he is, which I know every NICU parent probably hears, but it still means something every time.
My wife has been with him almost every single day since birth, she didn’t sleep in her own bed for 90 days. I’ve been going back and forth for work, which has its own kind of hard.
I guess I’m posting because I don’t really know what I’m looking for except, if you’ve been through something like this, especially the extreme prematurity plus BPD plus multiple extubation attempts combo, I’d love to hear how it went for you, what helped, what you wish someone had told you. And if you’re in the middle of it right now like we are, I see you. This community has quietly been a comfort even just lurking, so thought I’d finally share our story.