Emmett had a good day today. They officially stopped his caffeine and increased his feeds to 39 ML. He put on 12 grams tonight, which still rounds out to 4 lbs 8 oz. His face is starting to look downright chubby, and he’s getting rolls all over. He looks just like a normal chunky baby now, just smaller all over.
D was with him all day since I went into the office, and I just got back to the hospital around 9 p.m. tonight. In the short time I’ve been here he’s only had a few very quick desats and is hanging out in the high 90s most of the time. He’s still pretty grunty and refluxy, but overall it’s pretty boring here, which is fine by me.
Today was pretty uneventful. No changes, for better or worse; just a lot of the same. In fact, even his weight remained unchanged. Still holding steady at 4 1/2 lbs.
Tomorrow they are going to take him off his caffeine to see if that helps reduce the reflux. They usually stop caffeine around 35 or 36 week, anyway, and he’ll be 34 weeks tomorrow. It takes about 5 days to leave his system, so by the time it’s out he’ll be almost 35 weeks. Interestingly, I’m getting conflicting recommendations when it comes to caffeine between the doctor on rotation this morning versus the one last night, which is a little frustrating. When I pointed this out to the doctor this morning she said there’s no right or wrong way; just different schools of thought. She explained her reasons and then ultimately left the decision up to me, which is a little scary. I hope I made the right choice!
It’s been kind of a rough day. Even just typing out “day 50” sends a new wave of exhaustion through my body. I’m so tired. Emmett seems to have very suddenly developed a case of severe reflux and it’s been causing us a lot of issues. It started yesterday evening with him spitting up a couple times (out of character for him), escalated to a fairly traumatic spit up/choking/brady/desat episode late last night, and now all day today he’s been having desat events and struggling to breathe at times because he’s refluxing up into his mouth and nose. They had recently increased his feeds (he’s up to 36 ML per feed now) and think that could be what’s causing the reflux, but he’s been on full feeds for several weeks now, so the increase shouldn’t make that big of a difference — they’re just pacing his growth. Either way they don’t want to back off on the feeds since growing is still our primary focus. They’ve talked about possibly lowering his caffeine since he seems to be growing out of the apnea, and caffeine can exacerbate reflux. In the meantime, they’ve raised the head of his bed so he’s at a bit of an incline, and for now we wait and see if he gets better or worse. I held him upright this evening during one of his feeds and that seemed to help some.
To add insult to injury, he had another eye exam this afternoon. The same horrible ROP check he had two weeks ago. Unfortunately, this time he is presenting with stage 1 ROP. As I mentioned before, it’s rated from 1-5, with 5 being the worst. The good news is, the ophthalmologist said 90% of babies grow out of stage 1. About 75% will progress to stage 2 first, but will still be among that 90% and grow out of it. IF it gets to stage 3, we start discussing treatment options, but I’m hoping it doesn’t come to that.
On a positive note, he gained 62 grams tonight, bringing him to 4 lbs 3 oz.
Today was an exhausting day. Emmett is still having a lot more events than before. The doctors say it may simply be time to up his caffeine dosage again, but the caffeine tends to raise his heart rate so I sometimes feel like we’re just swapping one set of alarms for another. And all those alarms just fry my nerves. I broke down crying during kangaroo care today because I’m just so tired of it all. Big picture, I know these desats and bradys are probably no big deal and he should outgrow them. And in talking to other NICU moms who have had much more serious complications, I almost feel guilty complaining. But I’m just so, so tired. And deep down I worry that the increase in events could be an indicator that something bigger is wrong, or that he’s beginning to take a turn for the worse. Or what if he doesn’t grow out of these events in the next two months? I know things can change on a dime in the NICU, so while he’s been a rock star by all accounts, I simply don’t trust him.
The good news is, he’s still gaining steadily. He gained another 25 grams and is up to 3 lbs 5 oz now. His team was so happy with his gain that they’ve lowered his fortification from 28 to 26 kcal and increased his milk intake to 28 ML per feed. So he’s starting to take more of my milk and less fortification. It’s rare for early preemies to be on exclusive breast milk and they’ve told us even after he’s released he’ll probably need three “milkshakes” per day (bottles of breast milk fortified with extra calories via formula powder). But I’m glad we’re moving in the right direction by increasing the ratio of milk to fortification.
I’m home again tonight and D is at the hospital. On the one hand, it’s hard for me to be away, but on the other, after such an emotionally exhausting day, it’s probably good. It’s always the hardest to leave when I need the break the most. Here’s hoping for a better day tomorrow.
Another pretty good day, but we were still having a higher number of desats overnight and through the morning. The afternoon seemed better, so hopefully we’re headed for another good streak. The doctor decided to increase his caffeine again to see if that helps. Since he’s been gaining weight beautifully lately it’s possible he just needs a higher dose now. Despite the desats, the doctor decided he’s ready to step down on the flow in his cannula, so we’re going from 5 liters to 4 starting tomorrow. They also bumped his feeds up to 27ML.
D had a late soccer game tonight so we decided, for the first time since E was born, that neither of us would stay at the hospital overnight. So I’m home with T now and when D gets done with soccer he’ll just come home too. It just didn’t make a ton of sense for him to go to the hospital when he wouldn’t get there until close to midnight. It makes me hyperventilate a little when I think too hard about neither of us being there, but most of the NICU parents don’t stay there every night, and it’ll probably be good for us to actually stay together every now and then, anyway.
I called the nurse to check on E tonight and found out he gained another 20 grams, so he’s up to 3 lbs 1 oz. Unfortunately, the nurse said he spit up most of his evening feed, which I hate thinking about after our experience with him spitting up the other night and desatting. Hopefully I can actually get some sleep tonight.
After a good day yesterday, E had a lot of events overnight. Even though we seem to be having a good day about every other day, the events have been increasing in frequency. He also is more dependent on breathing support than they’d like him to be at this point. So D and I were invited to attend rounds this morning to talk about next steps.
Since many of his events seem to happen around feedings (a full stomach can make it hard to breathe), the nurse brought up the possibility of going to continuous feedings, instead of “meals” every three hours. They had already stretched out the feeding time from 45 minutes to an hour to allow him to digest his feeds without getting quite so full, but the doctor wasn’t quite ready to jump to continuous yet. For one, it would require an additional special feeding tube, but more importantly, he said the human body is designed to have meals, not continuous feeds so he preferred not to jump to that just yet.
The doctor recommended instead that we increase his caffeine intake. I can’t recall whether I’ve mentioned this before, but yes, you read that right — caffeine. They give caffeine to preemies because it prevents them from going into too deep of a sleep, because their brains are immature and they “forget” to breathe when they sleep too deeply. Since Emmett has gotten bigger (he gained another 28 grams today and is now up to 2 lbs 6 oz), and also because he’s eating more, his initial caffeine dose just might not be cutting it anymore. So he essentially got bumped from a grande to a venti.
The other thing they wanted to look at was his heart. We’ve known he has a murmur, which is really common with preemies and pretty much expected. But the doctor thought we should get a better look at it, so he ordered an echo cardiogram. Thankfully, we got the good news later this afternoon that the murmur is very mild and not likely the culprit of his increased episodes. It should resolve on its own eventually. In some cases the murmur could get worse down the road as his lungs grow, but at least now that we have a baseline, we know what to look for. If in a few weeks he suddenly starts having more episodes they’ll repeat the ECG to check its progress.
The good news is, after increasing his caffeine earlier he had a good rest of the day, so we’re keeping our fingers crossed that’s all we needed. The doctor also started him on a steroid inhaler (Flovent – the same thing I’ve used to treat my asthma) to treat some inflammation in his lungs. They’re hoping a couple weeks on the Flovent will allow us to start weaning him off some of his respiratory support so he can work toward breathing more on his own — an important step in getting him home eventually.
As if that weren’t enough excitement for the day, he also had his first bath! Now that his umbilical stump is gone, it was a prime time to do it. And he was starting to smell a little ripe. 🙂 He wasn’t a big fan of the bath and cried through most of it, but they put him on me for kangaroo care once it was over and we had a really nice session. I held him for almost three hours and his heart rate and oxygen saturation were really good.
After going home and having dinner with D and T, I’m back at the hospital and hoping for an uneventful night.