Well, Brynn is doing . . . average. She's been diagnosed now with chronic lung disease, which likely was complicated by having both a PDA and a lung infection. The disease itself, however, is caused by the very life-saving support she needs from the ventilator. Because the vent uses positive pressure to keep the lungs open (pushing air in rather than the diaphragm pulling air in), it causes irritation, inflammation, fluid buildup, and eventually scarring in the lungs. The scarring then makes it even more difficult to open the lungs (like when you first blow up a new balloon), and Brynn becomes more dependent on the machine's positive pressure to keep her lungs from collapsing. Really, it's all a catch-22 because without the vent, her lungs would not develop the scarring and be so difficult to inflate; but without the vent, she would've died from the exhaustion of breathing on her own.
Understandably then, the doctors' main goal is to get Brynn off the ventilator, but not wear her out. Because her lungs are so full of fluid, however (due to the infection and its ability to cling to the ET tube), her oxygen needs are all over the place. Weaning her from the vent, then, will be very difficult.
They're currently trying a drug called Lasix, which will hopefully dry up her lungs and stabilize her a bit so they can wean her. If that doesn't work, however, the doctors will pretty much be forced to use steroids. This is nerve wracking itself because the steroids can really damage her brain development; but they're hoping if they only do a few days--long enough to get her onto the CPAP--and then taper them off slowly, the risks will be worth the benefits to her lungs.
It's strange being her mother and discussing drug therapies with her father. Decisions about what we will and will not allow them to use is a new kind of responsibility that neither of us have experienced before. We only hope that our decisions will be for her ultimate good and are guessing that this is only one of a million we'll have to make in our new role as parents.
Wish us luck (and wisdom).
Luckily, nearly all babies with chronic lung disease overcome it completely by age 6-8. And in the meantime, she should still be able to run and play like a regular child--just no marathons.
On a lighter note, I have to share the following story. Although I will admit that I debated about doing so because I imagine anyone between six and twelve will shift a little in their chairs and giggle with their neighbor. Since, however, I trust that few if any readers fit that age category, I will tell it.
I was nearing the end of Kangaroo time and since we'd gone a little long, I had already passed my regular pumping time. Understandably, I was very full and the hormonal change of having Brynn on my chest didn't help matters any. The kicker, though, was when Brynn decided that my nipple was a great hand rest. She cupped her little hand right around it and began moving her tiny fingers. The stimulation, of course, caused a rather forceful let down and I leaked all over her hand, down my back, and onto the chair. I was laughing when I tried to move her little hand, but no sooner had I done so than she went right back to her new favorite spot! She must have thought that being wet was a new and interesting sensation!
Noah's 5th Birthday
2 months ago