NICU day 62

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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NICU day 52

Today was overall a pretty good day, although I did find out this morning when I called the hospital that they had to put the cannula back since E was having apneic episodes overnight. They said it’s normal to have to go back and forth a few times before it stays off for good, but it was still a bit of a bummer to hear. I slept in this morning, took care of some stuff around the house and then headed over to the hospital around noon. I’ve been here all day and will stay the night since T is still with the grandparents and D was going to a concert tonight. Tomorrow we’ll get T back. I’ve really missed him since I haven’t seen him since Thursday!

E is still having pretty frequent desats, but they’re quick and he pulls out of them on his own. He’s still bothered by the reflux, and consequently, so am I. It’s just so hard to listen to him grunt and cry and not be able to make it better, and the pain is causing him to hold his breath, which is contributing to his frequent desats. I may try modifying my diet to see if that helps. I read that cutting out dairy, acidic foods, spicy foods and reducing caffeine can help. Our kangaroo time got cut short today because he was so congested that they had to put him back in his crib and suctioned out about a million boogers that were a result of all the milk backing up into his nose. Poor kid. But at least now I can pick him up when he gets fussy, and being held upright seems to help with the reflux.

Emmett is continuing to grow at an impressive pace. He packed on 102 grams last night and an additional 76 tonight. He’s now 4 lbs 8 oz!

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NICU day 50

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.

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NICU day 20

We had a good night last night and a good day today overall, though my head is swimming with medical stuff.

This morning, the respiratory therapist and nurse brought up the idea of taking E off of the NIV NAVA machine, which is what kicks in and breathes for him when he has apneic episodes. He’s having so few of these anymore (though still a fair amount of bradys and desats) that both the nurse and RT thought he could be weaned and go to continuous forced air via his cannula. This would still provide some backup and stimulate him to breathe if he didn’t, but wouldn’t give him the puffs that basically breathe for him. I’m not going to lie, the thought made me really nervous. As much as I want to trust the medical professionals, this just felt like a really big step when just yesterday we were implementing more support in the form of increased caffeine and starting him on a steroid inhaler.

The nurse invited me to attend daily rounds to discuss his care with the rest of the team, and I was relieved when his doctor said it might be a little too soon to wean off the NIV NAVA. Instead, she’d like to give him a few more days on the Flovent and let him gain more weight, and reassess in a few days.

Another discussion item in rounds was his elevated heart rate. Since boosting his caffeine he’s had a few episodes where his heart rate goes up really high (into the low 200s), which sets off the alarms and is always a little scary. The doctor assured us that periodic high heart rate episodes aren’t harmful, and that the benefits of the caffeine outweigh the negatives. She said we don’t typically worry about a high heart rate unless it’s sustained, or we start seeing other evidence his heart is working too hard, such as changes to his blood pressure or failure to gain weight. As of now his blood pressure is still good, though he did manage to lose 20 grams today, despite the fact that they bumped his supplementation up from 26 kcal to 28 kcal. The weight loss was really disappointing, especially since they’ve been telling us all along that weight gain is the priority. And the fact that it coincided with the increase in caffeine and higher heart rate has me a bit concerned. We’ve been told a day of occasional loss isn’t a big deal, as long as it doesn’t become a pattern. Here’s hoping it was a fluke and we have a nice gain tomorrow.

Despite the medical overload and the disappointing weight loss, today was a good day overall. He stayed on 21% oxygen almost all day and had way fewer events than the last couple days.

Oh, and something happened tonight that made me smile. I had given Theo a fortune cookie this evening and, well, I think I may need to save this…

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Kangaroo snuggles.

Kangaroo snuggles.

NICU day 8

Last night was a little rough. Emmett had several bradys and vagels (heart rate drops brought on by gagging/choking). He recovered every time on his own and the team says it’s normal, but no parent likes to hear their baby’s alarms going off because their heart rate is dropping. I didn’t get much sleep at all, and I was still stewing about the nurse situation. In addition to last night’s cannula debacle, she just had no bedside manner. Not once did she even acknowledge the stress I’m under, even as I was curled up in the corner, sobbing. And not once did she talk to Emmett while handling him, and she handled him a little too rough, in my opinion (of course, that could just be the mama bear in me).

The good news is, one of my favorite nurses was on today. She is just so compassionate toward me, and talks sweetly to Emmett, which is exactly what a NICU nurse should do, in my opinion. One of the first things she asked me today was how I was holding up, and when I’d like to hold him. Since they like to time kangaroo care around when they do their “cares” every three hours (feeding, changing diaper, taking vitals, etc.), we decided I would hold him after his 2 p.m. cares. They also needed to swap out his isolette, which they do once a week so they can thoroughly clean them, so we decided they’d take care of that while I held him. The type A in me likes having a plan, and the “yellow” in me (a reference my work friends will get) likes being involved in said planning. So the morning got off to a good start. We had a plan.

The team holds parent rounds every Thursday at 10 a.m. so it was good to attend that today. This was our second time attending, though I honestly couldn’t tell you what they said at last week’s because I was still in a fog, less than 24 hours after giving birth. Today’s felt much more productive. I felt like I was more of an active participant in the discussion of his care and I’m starting to understand (and speak) the lingo. It was reassuring to hear the doctor say he wasn’t concerned about the bradys and he emphasized again how amazing Emmett is doing, especially for a baby born at 26 weeks. Part of me sometimes wonders whether they say that to all the parents, to reassure them — but if so, it’s working. I felt 100 times better after attending rounds. Our Emmett is certainly living up to his name, which means “strength.” Interestingly, I hadn’t even taken the meaning of his name into account when we picked it. It’s all a bit serendipitous.

One of the things the team discussed at rounds was starting to give E more breathing independence. Because he’s been doing so well, they decided to reduce his PEEP levels (positive end-expiratory pressure – essentially keeps his lungs partially inflated, even after he breathes out). The hope is to start weaning him from some of his assistance and move toward having him doing more of it on his own, so reducing PEEP was the first step. Unfortunately, it was kind of a bust. He had a few more apnea episodes than before so they turned it back to where it was before. Not a big deal – it was still pretty early to be doing that so we’ll give it some more time and try again.

As mentioned earlier, we planned to do kangaroo care at 2 p.m. I’m happy to say, it went much better than last night. I think a huge part of that was that my nurse really took the time to make sure E was situated on me in a comfortable way, that his wires were all tucked out of the way and his head was positioned in a way that allowed him to breathe easily. She also made sure I was comfortable, with pillows propping my arms up and warm blankets covering us both. E did fantastic and I held him for two and a half hours. Like the first time we did kangaroo care, E’s breathing and heartrate were steady, his O2 rose, and he just seemed so content. I fell asleep again too. One of the benefits of kangaroo care is that it increases prolactin — which helps with milk production but also makes you feel sleepy and euphoric. It was wonderful. I could have held him forever, but I had to leave to get T from daycare at 5 and needed to pump one more time before I went. I think I’m going to try to do kangaroo care during the day from now on since I like our day nurses better than our night nurses for the most part. Having someone take the time to get us situated really makes all the difference in the world.

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D is staying the night in the NICU tonight and I’m back home. Most of the time I really don’t mind staying at the hospital. The bed is comfortable enough, and I like being so close to him (and truthfully I don’t sleep that much better at home, anyway). But after last night, I think it’ll do me some good to get away for a bit and decompress. Right now I’m catching up on The Bachelorette, and I must say, it’s nice to do something mindless.

NICU day 3

Today was a good day. I’m trying to toe the line between optimism and realism, but today was a really good day. We had a good night last night too. E was a little fussy through the night (and that tiny cry is just so sweet), but fussy isn’t terrible. He’s certainly a fighter. The biggest issue with being fussy is that we don’t want him burning more calories than necessary since he isn’t gaining weight yet. But he calms quickly when you place your hands on him and it’s nice to be able to comfort him.

I actually slept really hard last night, even though I woke up to the normal NICU noise and E still had the bili lights on him so our room was pretty bright. I also had to wake up to pump every three hours, so even though I didn’t get uninterrupted sleep, I could tell I slept really hard when I was sleeping. I really needed that.

Speaking of pumping, it’s going really well. I got 15 ML first thing this morning and it keeps increasing with each session. My latest pump was 30 ML. It’s also starting to transition from colostrum to milk, so all systems seem to be a go. Even under ideal circumstances, breastfeeding is hard in the beginning – your body takes a while to adjust to the sensation and it can be downright painful at first. But at least when you’re nursing and you’ve got that sweet baby on you, your body releases endorphins. With pumping, you don’t get endorphins; just suction. I always hated pumping with T but did it out of necessity. It’s been really hard pumping around the clock, especially knowing I won’t be able to actually nurse him for a long time, and that even once we can, preemies often have a hard time with it. It’s daunting to think that breastfeeding may not work out and we could end up exclusively pumping. But I’ll do what I need to do to get him the nutrition to help him grow.

Unfortunately, we didn’t get to start feeding today like we had hoped, because his metabolic acid levels are still a little high. I mentioned yesterday that his levels looked good last night, but it turns out I misunderstood — they were looking much better, but they’ve kind of plateaued since. They aren’t super high, but high enough that they aren’t ready to introduce anything to his digestive system. It’s a bit of a catch 22 – breastmilk will help him grow and get stronger, but his stomach and intestines may not be strong enough to handle it yet, so we have to make sure all conditions are just right before we attempt. Meanwhile, they’re adjusting the composition of his IV in hopes that helps his metabolic acid levels and sets him up for feeding success.

His white blood count is also a little high. Initially they were supposed to stop antibiotics yesterday but with the metabolic acid levels looking higher yesterday the doctor gave him another dose so that’s a good thing we did. That said, too high is better than too low, so they aren’t super worried just yet.

I just realized I started this post saying he had a really good day and then listed a bunch of problems. But truly, these issues we’re currently dealing with are pretty minor, at least so far. Our focus right now is really just fine-tuning. With the exception of one scary apnea issue mid-morning (scary for me – he stopped breathing for a little longer than I was comfortable with, but the nurse wasn’t concerned), his breathing has gone really well today, and they were able to turn down his oxygen some. He was also able to come off the bili lights (though they warned us in about 50% of the cases he’ll need them again at some point). But he just seemed more comfortable today overall. He slept a lot, but had periods of awake where he would look at me and grab my finger with his tiny hands, and he had a few minor fussy episodes. He just seemed a lot more like a typical baby today, which was awesome. They’ll check his levels again around 4 a.m. and then we’ll discuss our game plan for the day.

As for me, I had a pretty good day too. The pumping progress certainly lifted my spirits and I think having a better night’s sleep also helped. I also stepped away from the NICU for a few hours today to take T to swimming lessons, which was probably healthy. D took him to a birthday party this afternoon and I went back to the hospital, and a friend stopped by to bring me some snacks and some other friends dropped off some cute home decor items to make our room feel more homey. I’m actually home now (D is at the hospital), and I got to put T to bed tonight. That was really nice to snuggle him and read him stories and feel just a little bit normal again. And even though I’ll have to set my alarm to wake and pump tonight, I’m hoping I sleep better in my own bed than I have been on the hospital couch in his room.

My big boy at swimming lessons.

My big boy at swimming lessons.

 

Opening his eyes.

Opening his eyes.