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 we reached 31 weeks gestational age. We’re into the single digits in weeks on our countdown to going home. I realize we could go home earlier or later — and the doctor told me the other day that if things keep going the way they are, she sees us going home much earlier — but until we get closer to having a better ETA, I’m using our due date to avoid getting my hopes up.
Emmett had another good day today. His weight is up 60 grams, finally bringing him over the 3 lb mark! His hematocrit levels are also up 5 points, so the Epo seems to be doing its job. He’ll stay on it at least another week and then they’ll reevaluate.
E got to “nuzzle” again during kangaroo care today. He did more rooting than yesterday and even a tiny bit of sucking, but didn’t officially latch. Great progress. The only bad part was when they were putting him back, the moisture in his cannula backed up into his nose a bit and he stopped breathing. Babies this young don’t typically aspirate, thankfully, but their bodies’ response to getting water in their airway is to just stop breathing. Which is also scary. The nurse had to pull his cannula out and stimulate him a bit to get him going again. It was only for a few seconds, but they felt like an eternity.
He’s still having a few more events than I would like, which is only more noticeable due to the good streak we had last week. But we’re told repeatedly that he’s doing really well, especially for a “wimpy white boy.” I’ve had multiple NICU staff point out that statistically, Caucasian males have the most problems and longest stays in the NICU. Conversely, black females typically do the best. There aren’t any conclusive studies that explain why this may be, but it is statistically accurate. So not only is Emmett doing great for how early he was born, but he’s doing so in spite of his race and sex. He should grow out of these events as he gets older and bigger, so growth is still our biggest goal.
Wide awake – and looking so much like big brother!
Emmett is now four weeks old. I sound like a broken record but time has really flown, yet it also feels like we’ve been here forever. If we’re going by due date as our planned release date, we’re about 1/3 of the way there, so that’s promising.
E is still doing fantastic in the breathing department. They decided to give him one more day at 6 liters on the high-flow and will step him down to 5 liters tomorrow. He is also still having very few events, compared to just a week ago. He had two self-recovered bradys today that I’m aware of, and one of them didn’t even include a desat (usually he desats right after a bradycardia event).
Unfortunately we did get the news today that his red blood count is very low, and since he’s already on the maximum dose of iron, they’re moving onto something a bit more aggressive: Epogen – an injectible protein that causes your body to generate more red blood cells. So if Emmett wins the Tour de France he won’t pass any blood doping tests. The hope is that the Epo will help him avoid a blood transfusion, which carries more risks. The main risk factor with Epogen is an increased risk of ROP (retinopathy of prematurity – a degenerative eye disease) – but that risk is usually higher in babies closer to 33-34 weeks, when the eye’s blood vessels are rapidly growing. Babies are also at much higher risk of ROP when they’ve been on high levels of oxygen for an extended period of time. Since he’s never spent much time on high levels and has been on room air for several days now, the doctor felt he was a prime, low-risk candidate for the Epo. They will administer it three times per week for two weeks and then recheck his levels. With any luck he’ll be off the Epo before he reaches that 33-34 week stage where his eyes are at a higher risk anyway.
Another small thing we dealt with today was some jumping blood sugar levels. First they were high, then they were low, and then they were normal. They are going to recheck in the morning, but didn’t have any idea why they might be doing that. They didn’t seem too concerned, but I get a little uneasy with the lack of explanation.
They didn’t weigh him last night until after midnight, so I didn’t include that in yesterday’s entry, but he went up a whole 70 grams! But then tonight he lost 30, which we kind of expected after such a huge jump yesterday. Still, he’s up to 2 lbs 11 oz — almost a pound above his birthweight! Keep growing! He will be one month old on Saturday and I would love nothing more than for him to hit the 3 lb mark. #squadgoals