NICU day 28

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

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