ROP – Keeping up with the Hoffmans

NICU day 62

July 19, 2016August 7, 2018 Keeping up with the Hoffmans

This morning I woke up excited to try breastfeeding again after last night’s progress. Unfortunately, Emmett had other plans and showed virtually zero interest when the nurse put him on me. It was really disappointing. The nurse and I agreed we’d try again later, and I’m happy to say this afternoon was a much better experience, similar to last night. Like last night, he still isn’t completely getting it, but he was making an effort, and latched a few times. I think the big difference was catching him when he was wide awake. Until he really gets the hang of it, I think trying to nurse him while he’s sleepy is going to be futile and we’re going to have to be more opportunistic about trying when he’s alert. Now that he’s latching, though, I’m noticing just how much his tongue tie is going to affect his ability to effectively nurse, and so the doctor and I agreed they’d clip it in the next few days.

While talking with the doctor today, she also recommended we reconfigure his breathing support. Whereas he had been on 1 liter of oxygen, anywhere from 21 to 30 percent concentration, she instead recommended we try an oxygen tank at 100 percent, but drop the pressure way down. In theory, the lower flow but higher oxygen concentration should give him just the boost he needs to keep his saturation up, while reducing the amount of forced air into his nose, causing him less irritation and congestion. Also, if he were to have to come home on oxygen (still hoping that’s not the case), it would be a similar setup as this — a portable tank with higher concentration and less pressure. They started it at almost no pressure, but then ended up having to bump it up to 1/4 liter after he had a couple apnea episodes this afternoon, and then up to a 1/2 liter after another big apnea tonight. If he doesn’t tolerate that well overnight, he’ll go back to his previous configuration. Two steps forward, one step back, I guess.

Late this afternoon, we got the news that E would have another eye exam at 6 p.m. I knew it was coming up soon, but these exams always seem to sneak up on me. It was just as horrible and torturous as the previous two, but I’m happy to report his stage 1 ROP has resolved itself so we never have to repeat that awful exam again! I can’t help but think the eye exam is at least partially to blame for his regression tonight. He tends to have a rough time after those.

Weight was up 44 grams tonight, bringing him to 5 lbs 7 oz.

I can't stop kissing his fuzzy little head. — I can’t stop kissing his fuzzy little head.

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Baby Emmett, NICU

NICU day 36

June 23, 2016August 7, 2018 Keeping up with the Hoffmans

Today was a day of highs and lows. I woke up this morning to the news that Emmett would be having his eye exam at 8:30 to check for ROP (retinopathy of prematurity). I knew they would be checking for it soon, but hadn’t realized until this very morning that it was already scheduled. D quickly drove over from work so he could join us for the test. The ophthalmologist warned us that for a baby born as early as he was, it was very likely he would have it to some degree. They rank it in severity from stage 1 to stage 5, and the doctor said we were hoping it was below stage 3. Then he explained how he would conduct the test. My stomach churned, hearing him describe how they would peel his eyelids open and us an instrument to move his eyeballs around so he could get a good look at all sides. The nurse suggested we not watch and we happily obliged. So we mentally braced ourselves — both for the test itself and the results. I’m glad we didn’t watch, because the sounds Emmett made brought me to tears. Thankfully it was over quickly, and the ophthalmologist informed us that he was stage… ZERO! No signs of ROP, which is pretty amazing. He isn’t out of the woods yet (it can present itself later) and we’ll have to repeat this awful test every couple weeks until he’s close to full-term, but what a relief!

Having E pass his ROP test with flying colors made me insanely happy. I’m so proud of him. I don’t want to jinx anything but we keep passing all the scary stuff (brain bleeds, ROP) and now he really just needs to gain weight and all his bradys and desats should work themselves out. And – he was up another 43 grams tonight, bringing him to 3 lbs 4 oz. Like I’ve mentioned before, his “wimpy white boy” status and early gestation don’t seem to be holding him back either. He just keeps defying all odds. The neonatologist stopped by shortly after the eye exam and reiterated how great he’s doing and said if he keeps up the good work, we’ll drop him down to 3 liters of flow this weekend, and by next week he could be down to 2, which would allow him to try breastfeeding if he’s ready! After our chat, she basically told us not to bother coming to rounds because that’s about all there is to say about him at this point. Really can’t ask for much more than a boring patient in the NICU.

I warned you that this was a day of highs and lows, so here’s where it gets low. The ROP test completely wiped him out and he had a major increase in bradys and desats today. The nurse said that was to be expected, but it was still really disheartening. He’s had a bad streak the past few days anyway, and this test just kind of put him over the top. His poor eyes were all red and puffy from the exam, and even kangaroo time wasn’t very calming for him today. We started out in the nuzzling hold but he just couldn’t seem to get comfortable and his heart rate was skyrocketing from all the fussing he was doing. He wasn’t doing any nuzzling this time anyway, so after about an hour of failing to make him comfortable, I had the nurse help me reposition him so he was upright in the traditional kangaroo hold to see if that helped. It helped some, and he did eventually calm down. But then shortly after we put him back, the RT came in to change him to a different high-flow machine and the machine made a really loud sound and scared him into three brady-desats in a row. It scared the crap out of me and even the RT was very apologetic and said he didn’t think he’d react like that. I think it was all just too much for him.

D went back to the hospital after dinner and thankfully said he seems to be doing better this evening. I’m hoping we’re past the recovery period for the eye test and he’s on his way back to normal. Really dreading having to repeat this every two weeks. I know things could be much worse — and like I said earlier, he’s really doing amazing. It’s just so hard to see him uncomfortable and not be able to do anything to help him. It was just a really draining day.

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Baby Emmett, NICU

NICU day 28

June 15, 2016August 7, 2018 Keeping up with the Hoffmans

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