Emmett had a pretty rough night last night. D was with him and said his alarms were going off all night. This morning we met with the doctor who told us Emmett has chronic lung disease, or bronchopulmonary dysplasia. He turned his oxygen flow back up to 4 liters and ordered a chest x-ray to be sure, which confirmed the diagnosis. It was upsetting to hear the word chronic. Contrary to what we’ve been told all along, this may not be something he simply grows out of. The doctor recommended putting him on a 10-day dose of prednisolone and we agreed. The other options were to put him on a diuretic to drain the fluid from his lungs, or to turn his oxygen flow back up even higher — but that would reverse a lot of the progress we’ve made thus far on weaning his respiratory support and could put off breastfeeding even longer. So we’re hoping the prednisolone helps, but it’s very possible this may be an ongoing issue for him and the doctor said in some cases babies with CLD even go home on oxygen. I’m feeling pretty defeated.
On a positive note, his red blood cell count was good today so he got to come off the Epo. We had a good kangaroo session today with very few events and he seems to be doing well this evening. He’s back to 21% oxygen and satting in the high 90s for the most part, with the occasional brief desat. He lost 10 grams tonight, which isn’t super surprising after several days of high gains. He also missed at least part of his 5:30 p.m. feeding because he pulled his feeding tube out yet again when I went home for dinner, and the nurse didn’t realize it until she went to check on him and the tube was out and there was milk all over him and his bed. Something tells me this kid is going to be a trouble maker.
Emmett is now 5 weeks old and weighed in tonight at 3 lbs. 3 oz. The weight gain makes me really happy. For one, gaining has always been our biggest goal since his other issues should work themselves out as he grows. But also, seeing those numbers go up provides a tangible measure of progress that I can fully understand. Unlike all the other numbers that leave my head spinning, weight = good. And the closer he gets to weighing what a term baby would weigh, the better.
He’s still having some oxygen saturation issues, and they turned his cannula flow down to 4 liters today, which may be contributing, or at least didn’t help. All day we were chasing the numbers. They’d turn his oxygen down and he’d desat. So they’d turn it up and he’d high-sat. Lather, rinse, repeat. But he’s at 21% currently and satting nicely so hopefully we’ve turned a corner.
He’ll need to get down to 2 liters before we can truly attempt breastfeeding, though the nuzzling we’re doing during kangaroo time is still going really well and he did quite a bit more actual sucking today. Still not officially feeding, but he was definitely pacifying. The nurses are impressed with his progress, and it just felt really normal and natural to have him there like that. It’s funny the things you take for granted until you’re thrown into a situation like this where “normal” is rare and momentous.
Another pretty good day, but we were still having a higher number of desats overnight and through the morning. The afternoon seemed better, so hopefully we’re headed for another good streak. The doctor decided to increase his caffeine again to see if that helps. Since he’s been gaining weight beautifully lately it’s possible he just needs a higher dose now. Despite the desats, the doctor decided he’s ready to step down on the flow in his cannula, so we’re going from 5 liters to 4 starting tomorrow. They also bumped his feeds up to 27ML.
D had a late soccer game tonight so we decided, for the first time since E was born, that neither of us would stay at the hospital overnight. So I’m home with T now and when D gets done with soccer he’ll just come home too. It just didn’t make a ton of sense for him to go to the hospital when he wouldn’t get there until close to midnight. It makes me hyperventilate a little when I think too hard about neither of us being there, but most of the NICU parents don’t stay there every night, and it’ll probably be good for us to actually stay together every now and then, anyway.
I called the nurse to check on E tonight and found out he gained another 20 grams, so he’s up to 3 lbs 1 oz. Unfortunately, the nurse said he spit up most of his evening feed, which I hate thinking about after our experience with him spitting up the other night and desatting. Hopefully I can actually get some sleep tonight.