Today was relatively uneventful – a welcome change from the past couple days. Emmett is still having a higher number of episodes, but I think it’s only obvious in comparison to the good week he had last week. I still stare down the monitors, silently willing the numbers to go back up every time he has a brady or desat, but as scary as those events are, he always pulls out on his own.
Most notable events of the day: they turned his oxygen flow down to 3 liters (though he’s been hanging out around 24% to compensate) and he’s put on another 20 grams. He’s 1600 grams even currently, which still rounds out to around 3 lbs 8 oz. He pulled out his feeding tube yet again overnight. This time he at least had the sense to pull it out completely (all 17 cm) so it didn’t cause him any reactions. The nurse simply went in to start his feed this morning and his gavage was just laying beside him. Stinker. They are having to get creative in their taping tactics to keep it in place. I can only imagine this will become more of an issue the bigger, stronger and handsier he gets.
Kangaroo care went well today. He started out nuzzling but after a while he seemed uncomfortable and grunty so I pulled him upright into the traditional kangaroo position, and he passed out. It was hard to put him back, he seemed so content. It’s nice that he’s finally feeling sturdy enough that I’m comfortable repositioning him on my own without having to call a nurse in to help. What a difference from just a few weeks ago when it took two nurses just to pull him out of his isolette and put him on me!
The face of contentment.
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.
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.
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!
Today is Father’s Day. We didn’t do much. D spent the night at the hospital last night, and then I brought T to meet him and we all had lunch together in the hospital cafeteria. Fancy schmancy. D took Theo home to nap and I stayed at the hospital for an afternoon of kangaroo care, before going home for dinner (reheated casserole!) and then back to the hospital after tucking T into bed.
Today’s kangaroo care was great! We got to try “nuzzling” for the first time since the nurse thought E was showing signs he may be interested in breastfeeding soon. Basically, instead of holding him upright and parallel against me, I held him in the crook of my arm as if I were nursing him, but just followed his lead. He didn’t really know what to do just yet (nursing instincts don’t typically kick in until around week 32), but he did a little rooting and gave me the occasional lick. It may not sound terribly significant, but it was wonderful. We’re still a couple weeks away from him really being able to do much more than that, but it was a good step in the right direction. At the very least it was great to be able to hold him like one would normally hold a baby and to look down at his face. Usually during kangaroo care he’s right under my chin, so I can only see him if I really crane my head back — or use the selfie mode on my phone. 🙂
Today was otherwise pretty uneventful, which is always good. I don’t think he had any bradys today and only a few minor desats. Weight was unchanged, but he’s had several days of sizable gains so that’s not unreasonable.
Another day down. Some days I feel like a prisoner etching tally marks into my cell wall.