Skip to main content

Leda update

Big update on Leda today that was just too much for FB or Twitter. So welcome if you're new to the blog. Feel free to stay and read a little more if you'd like. Sorry for the medical jargon, but it's our world right now.

She was doing great yesterday. Nursing, taking feedings by bottle, drinking what she should. A couple mild episodes but her temp was great and she's gained back weight to 5 lbs. 1 oz. So I'd already told myself that today may be a "down" day because she worked so hard earlier.

But overnight she had a series of about 6 low heart rate and breathing desats that kind of exploded us into a series of forks in the road now...

They opted to re-dose her with caffeine because the episodes were at the end of where last week's would have worn off. Unfortunately, that automatically (maybe) adds 2 more weeks to her NICU stay because they need to wait the week of the caffeine--she will get maintenance doses this time--plus an extra week to see how she does with the maturity of her systems once the caffeine is gone.

Fork in the road 2, however, is that despite today being on an every-other-feeding bottle versus tube schedule, she was progressing towards better eating. Ideally, she should be hungry and take all her feedings by mouth. If that happens soon, most insurance companies will kick the babies out of the NICU and want them home--cheaper of course.

Bottom line is that in one scenario, Leda's home in 2 weeks if she is doing well. In another, she's home around her expected due date. In yet another, she'd be home in less than 2 weeks but have breathing and heart alarms and a home nurse. Which gets complicated because some insurance companies want their own home nurse...which sends us right back to the NICU because Loyola wants their nurses or they will just keep her.

Yet another situation would be that they don't get Leda where she should be on the feedings and leave the feeding tube in for home along with the other monitors. Which would obviously require more than the once or twice a week home health visit.

So...she's doing great and will continue to make progress. But they kind of set their own schedules and nothing can mature her little lungs and heart and brain faster. It turns into a game of "when would she have actually come" to decide whether she would have been ready to be in the world at 37, 39, however many weeks.

Interestingly, they just presented a paper on 34 week babies and caffeine about whether gender or other factors predict length of stay. It wasn't anywhere in the scientific literature and their conclusion was that ability to mature beyond preemie status wasn't predicted by anything. Some babies are slow, some are fast, no way of telling.

As a side note, the nurse warned us that the home monitoring machines have a lot of false alarms.

Kelly and I right now are so conflicted. It seems like a lot of "no right answer." We want to bring her home but we also want her to be safe. And there is also the issue of knowing your own kid sometimes better than the doctors. I'm fairly confident that if we took the tube out right now she'd take at least half her bottle every feeding, but at what cost? The tube right back in?

How hard do you push or not push a tiny 5 pound newborn to meet the expectations of a variety of people? So proud of her already though. She's a fighter...already her diaper is harder to change than Cole's. lol

Comments