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.

NICU day two

Emmett is two days old now – about 55 hours to be exact. So much has happened in just one day, and I think the gravity of what we have ahead of us is starting to sink in. How can we do this for three months? It feels impossible. But I guess we have to. The alternative is even more difficult to fathom and I refuse to even type it. The good news is, Emmett continues to impress the NICU team, though we certainly got our first taste of the “two steps forward, one step back” pattern we were warned about today.

The biggest milestone today: they removed his breathing tube! That’s a huge step in his journey toward breathing on his own. The problem was, he still needed some assistance, and the team determined a CPAP (like what adults with sleep apnea use) was the way to go — and Emmett HATED it. It was too much air pressure for him, so every time he would get a puff of air from the CPAP through his nose, he would open his mouth in reflex and chuff out some of that precious oxygen. This caused the oxygen sensors to go berserk every couple minutes and made it sound like he was crashing. Even though the nurse and RT assured me he was fine – that he just needed to get used to it and that the alarms were just overly sensitive, the sound of all those alarms was just so unnerving, and in my sleep deprived state (3 hours last night and 4 the night before), it was simply too much for me to handle. Emmett was flailing around in protest, alarms were going off left and right, and I broke down sobbing. This went on for a couple hours. They even put a chin strap on him to keep him from letting all the air out his mouth, but then his face just looked smooshed and he was still fighting the machine. Finally, the team determined he was expending too much energy fighting and tried a nasal cannula instead of the CPAP. It was like an instant calm came over the room and things have been better ever since. I swear, I’m going to be hearing that damn alarm in my nightmares. D joked that E will probably need it to fall asleep once we take him home.

One thing I should mention, that was pretty amazing, was in between pulling the tube and putting on the CPAP, I got to see his full face again for the first time since birth. It was only a split second, but I snapped a quick photo.

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Another benefit of not having the breathing tube is that he can actually cry now! As of right now it sounds more like a kitten mewing than a baby crying, but to me it’s the most beautiful sound in the world. I hope six months from now when he’s hollering and screaming all night, that I remember and appreciate how truly beautiful that cry really is, and how far we’ve come.

His bilirubin was looking a little low today, so after bragging yesterday that he hadn’t needed phototherapy yet, he started on it today, and will be on it through the night. They’ll draw his levels again in the morning. Thankfully, he doesn’t seem to mind it, though our whole room is glowing blue.

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Around 1 p.m. the nurse wanted to insert a PICC line for nutrition and antibiotics. It’s a bit of a complex procedure so they require parents to step out of the room. D and I used the opportunity to take a walk and get some fresh air. We went down to an outside courtyard and sat in the sun, and I called my parents and gave them an update. The nurse called me on my cell when they were done and we went back to the room and found a calm and sleeping Emmett. Everything had gone perfectly with the PICC.

Around 5 p.m., the doctor stopped by to tell us she was concerned with how high his metabolic acid levels were. She said it could be something as simple as dehydration (he has been peeing a ton), or it could be an infection. She wanted to give him fluids and another dose of antibiotic (he’s been on antibiotics since birth due to the amniotic rupture), and then check his levels again at 8 p.m. If they didn’t drop, she wasn’t sure what could be causing it and mysteries are no good. D and I were a little troubled, but took a break to go home to the dogs, ate some dinner, cleaned up the house a bit and then met the doctor back in E’s room at 8. Thankfully, his metabolic acid levels are now fine. What a relief.

Another highlight of my day? I officially have working boobs. I may have shed tears of joy over pumping a whole 1.5 ML of colostrum this morning. It’s not much, but it was enough to get into a syringe and we can start feeding tomorrow (he’s been on just IV fluids so far, and the doctor wanted to figure out what was happening with his metabolic acid levels before we attempted feeding). I’ve been pumping every 2-3 hours around the clock since he was born and was beginning to get pretty frustrated with my lack of anything to show for it. But since this morning’s pump, I’ve been gradually increasing my production and am now up to 8 ML. The nurse says we’re already way ahead of what he needs, so I guess I’ll just get started on that stash! Since we’ll be pumping for quite a while before I can actually nurse him, it’ll be nice to have a good stash built up so I don’t have to worry about running out. Speaking of nursing — the nurse and I both noticed he has a tongue tie, which could interfere with nursing. They said it would be no problem to clip it once we get a little closer to that milestone. No use in putting him though more than necessary right now.

D went home to sleep shortly after talking to the doctor this evening, and I’m spending another night in the NICU. Tomorrow I’m going to take a little break and take T to swimming lessons, and D will come stay in the NICU. Then around naptime we’ll trade off and I’ll head back here and he’ll take T to a party. I’ll probably go home to sleep tomorrow night since we’ll have T with us again. Balancing our home life and our NICU life is going to be a bit tricky. We still haven’t decided when or how to tell T about baby brother, but will probably wait until E is presentable enough that we can introduce them. Right now all the wires are pretty intimidating and he’s too fragile for us to even hold. I can’t wait for the day I can get a picture of Theo holding Emmett.

Really looking forward to seeing my big boy tomorrow. I’ve missed him so much.