Anyone who’s ever been pregnant (to term) will tell you that the ninth month of pregnancy lasts approximately 68475840383758202 years. I’m beginning to think the same is true for that final stretch of NICU life. Since the day Emmett was born, the doctors and nurses have all told us to plan to be here until around his original due date. Sometimes babies go home sooner, sometimes later, but the due date is a pretty average target for a release date when you have a preemie, particularly a really early one. And I think I was okay with that until Sunday when we were teased with the possibility of an early release. Since then E has slipped back into his old ways. Frequent but minor desats, occasional bradys, lack of progress on the eating front. On the bright side, he’s off oxygen still. But it’s looking like these feeding issues will be the final hurdle.
I’m just exhausted and I’ve hit my wall. I know we’re almost done, and he really is doing well. But for some reason I’m having a harder time now than I ever have. I just want him healthy and home so we can begin normal life.
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.
Today was a good day. Emmett has reached 30 weeks gestational age (happy to be out of the 20s!) and put on another 30 grams, bringing him to 2 lbs 10 oz. Another huge milestone is that he graduated to the high-flow nasal cannula, so we said goodbye to the snorkel mask.
I’ll admit, as much as I missed seeing his face, I was very hesitant to get rid of the CPAP since he had been doing so well on it. We’ve had an amazing past few days with very few events, and I worried that this might take us back to the days of multiple desats and bradys. Happy to report that so far, things seem to be going just as well on the high-flow. I don’t think he’s desatted at all today and has only had one bradycardia, which was very brief and self-resolved.
In addition to changing up his breathing support, we’ve also increased his milk intake to 23 ML per feed, and have gradually reduced his feeding time from an hour to a half hour (still every three hours). They had previously stretched out his feedings to an hour since he kept desatting as his tummy filled, but since he hasn’t been doing that, they were able to get him back to 30-minute feeds, which is the standard.
In an effort to minimize any stimuli and allow him to conserve calories (and gain more weight), the nurses are now only doing his cares (diaper changes, repositioning, etc.) every four hours, instead of every three. Which means now if I want to hold him for the entire stretch in between cares I need to do it for four hours! I did it today, but by the end I was hungry, had to pee, and my boobs felt like they were going to burst with such a long stretch between pumping (and having a baby on my chest certainly didn’t help!). But dammit, I was determined to make it the full four hours. I was talking to another NICU mom the other day and she had also talked about “powering through” the long holds to give her baby maximum skin time with minimal disturbances. The sacrifices we make as moms, right?