NICU day 92 and 3 months old

I had really hoped we’d be out of the NICU by the time his three-month birthday came. But here we are. Actually, we had a really interesting conversation with Dr. L today at rounds. He asked us if we were tired of being here (duh) and said while they don’t like to do this, if we were interested, we could learn how to insert a feeding tube and we could go home on the NG tube while we continued to work on feeding.

I was shocked. He was basically putting the decision in our hands when to go home. I feel really conflicted. I want him home so bad. But I want him home healthy. And bringing him home on a feeding tube would mean multiple follow-ups with specialists, possible g-tube surgery, and the intimidating chore of changing his tube ourselves (which comes with the risk of accidentally inserting it into his lungs instead of his stomach – yikes.) It would be one thing if we were facing a long-term feeding issue. But all the doctors and nurses say this is textbook for an early preemie and that he’ll grow out of it. He just needs time. I just wish I knew how much time we were looking at. Another week, two weeks? Let’s wait it out and bring him home wireless. Another month, two months? Let’s just get him home already and stop wasting time in the hospital. So after talking it over with D and the rest of the medical team, I think we have a plan: give him until 42 weeks gestation (he’ll be 40 weeks on Monday) to lose the tube. His team thinks he’ll probably figure it out before then anyway, but if not, we’ll bring him home with a feeding tube at 42 weeks. If nothing else, it’s nice to have a hard stop.

Feeds went okay today. He’s taken more feeds by gavage than usual (three today, compared to his usual one a day), but the feeds he has done have been nearly full volume. It seems whether he takes a half feed every time or a full feed every other time, he’s still stuck at around 50-60 percent of his volume orally right now.

Anyway, with that daily update done, here’s what’s going on at three months…

Adjusted age: 39 weeks 3 days

Stats: 7 lbs 10 oz and 18.9 inches.

Milestones: As of August 1st we are off oxygen! Starting to do tummy time a few times per day.

Sleeping: Still sleeps pretty well, but I think that has more to do with him spending all his energy trying to eat. Though I still have hope we got a good sleeper this time since Theo was horrible!

Eating: The bane of my existence and obsession of every waking moment? In other words, we’re working on it. 65 ml of breastmilk plus 24 kcal of Neosure to fortify my milk, every three hours. Combination of breastfeeding and bottle feeding pumped milk (about 50/50 currently).

Personality: Is it too soon to say he is an affectionate baby? Theo was always so busy and not much of a snuggler. Even when he was an infant he was constantly moving and trying to see everything. E seems much more content to snuggle up against me. Part of that could be his prematurity. We’ll see…

Likes: Snuggling, being held. When he cries he calms down instantly when you pick him up.

Dislikes: Gas, reflux, having his temperature taken and his NG tube. Tries to pull it out often and hates having it put back in.

Mama: Still hating pumping. Still going into the office twice a week. It’s been hard to plan for things, knowing I’ll be out soon, but not knowing exactly when that will be. Starting to drop a bit below my pre-pregnancy weight, which is nice. I lost quite a bit of weight while breastfeeding T, but then gained it back, and then some, after I weaned. I’ll have to be more aware of that this time around. I’ve started losing my hair lately — I had completely forgotten about that fun postpartum side effect. When you’re pregnant you often stop losing hair (which is why pregnant women usually have great hair), but then a couple months postpartum you lose all that hair you should have been gradually losing during pregnancy. The human body is weird. Yesterday during barre I kept having that sensation that a hair was tickling my arms and I must have pulled about 10 strands of hairs off myself throughout an hour long class. At this rate I’m expecting to be completely bald in a few weeks.


NICU day 66

Last night I spent the night at the hospital. Like the night before when D had stayed, Emmett had a pretty long night of just general fussiness. The good news is, he’s having way fewer events than he has lately. But that reflux is just brutal. He spent pretty much the entire night grunting, punctuated by the occasional crying spells. So I didn’t sleep well and was up a lot. It was kind of like … having a newborn.

This morning, after a quick attempt at breastfeeding (still not really getting it), I left the hospital to meet D at the pool for Theo’s swim lessons. Since I was running late, I decided to pump on the way, something I’ve done many times. I’ve mastered the art of pumping and driving. I have a hands-free setup, so I simply get everything situated before I start the car, and then unhook once I get to my destination. I usually wrap a cardigan around myself so it’s not so obvious to the cars next to me. Well, I may have been driving a little fast, trying to make it to the pool on time (I bet you can guess where this is going). Yeah. I got pulled over. While pumping.

I had a moment of panic when I saw the lights. Although a cardigan is sufficient cover from drivers in the lane next to me who probably aren’t looking too hard into my windows, the thin, semi-sheer fabric didn’t exactly hide the outline of my pumping shields. Or the noise of the pump, for that matter. So much awkward. Thankfully, I think it was even more awkward for the police officer, who quickly let me off with a warning. I think he wanted to get out of there even faster than I did.

I had a good day with Theo, watching him swim, and then meeting up with some friends with kids his age for lunch and play time. Then I had to rush back to the hospital (once again pumping in the car, but this time paying close attention to the speed limit!), so I could meet the doctor for E’s frenectomy (tongue tie clip). I was nervous about the procedure, but it ended up being very quick and he hardly cried at all. The eye exams were 100 times worse. They immediately put him on me afterward to nurse — both for comfort and because they want him extending his tongue as much as he can right away. It went a little better than this morning’s session. He’s still kind of a lazy nurser (which will hopefully improve with practice and maturity), but I could already tell his latch was improved, so I’m hoping we continue to make forward progress.

He’s still hanging out on the oxygen tank at 1/32 liter and hardly having any events (knock on all the wood). He got a bath this evening — first time in the sink — and did pretty well. Weight was up 58 grams, bringing him to 5 lbs 15 oz. He very well may crack 6 lbs tomorrow!


NICU day 61 and 2 months old

Today Emmett is two months old. And we’ve been here 61 days now. With any luck we’re about 2/3 of the way through this NICU journey.

I went into the office today so D was here most of the day. He seems to be doing better with his breathing and reflux, though they were having to chase his oxygen levels all over the place today. He’d desat and they’d turn his O2 up — and then he’d high-sat and they’d turn it down. They’re still having to suction him a fair amount, but he sounds better than he did the other day.

This evening I hurried back to the hospital after dinner so I could get here for his 8:30 cares and give breastfeeding another shot. I’m happy to say we had, by far, the most successful session to date. More about that below.

So here’s what’s going on at two months…

Adjusted age: 35 weeks

Stats: 5 lbs 5 oz and 17.5 inches. Like last month, I created the image below before they did his evening weigh-in. I figured like last month he’d maybe be an ounce or so off but wasn’t expecting him to put on a whopping 110 grams tonight!

Milestones: Getting moved to an open crib, stepping down to low-flow nasal cannula at 1 liter, beginning to breastfeed.

Sleeping: So far so good, but as I mentioned last month, at this gestation most preemies sleep pretty well. Within the next few weeks he should start showing his true colors.

Eating: 45 ML of breastmilk every three hours via NG tube, plus 26kcal of fortification added to my milk.  We got to try breastfeeding for the first time last week, and as of tonight I think it’s finally starting to click with him. I think it was a combination of him feeling better, simply getting bigger and more mature, and I think a lot of it was that I was more comfortable. For the past several days the lactation nurses had been telling me to hold him a particular way (“cross body” hold, with my hand holding his head), and I had been following their direction, even though it felt unnatural to hold him this way (I had always preferred to nurse Theo in a “cradle” hold, with his head in the crook of my arm). But since I had never fed a preemie before, I followed their direction. Tonight I did what felt natural to me, and was far more successful. Moral of the story? Listen to your instincts, mamas.

He still isn’t able to get much, but he was rooting around, opening his mouth and truly giving it his best effort. And several times he would latch and actually get in several good sucks before losing his “grip.” He probably would have done even better, but he got a vicious bout of the hiccups about halfway through and I could tell that just wiped all his energy. It was just such a relief to see him actually doing what he should, though, even if he needs more practice. I think the most discouraging part about the past few days is that he just didn’t seem to know what he was supposed to do. We’ll probably try weighted feeds tomorrow (where they weigh him immediately before and after to see how much he got), now that he seems to be actually getting a little. As he gets more and more by breast, they’ll start subtracting that amount from his tube feedings.

Personality: Like last month’s update, it’s still pretty early to see much personality shine through, but he’s certainly gotten more vocal about when he’s unhappy with something lately! Whether it’s reflux or those horrible eye exams he isn’t shy about speaking his mind.

Likes: Being held. His oxygen and heart rate are always at their best when one of us is holding him.

Dislikes: Reflux and eye exams. And boogers.

Mama: is down to pre-pregnancy weight but feeling pretty squishy still. I went to barre for the first time postpartum last week and am hoping to start making that a regular habit again.

I’m back at work now so that I can save the rest of my leave for when E comes home. It’s actually been kind of nice to be back. I only go into the office twice a week (usually Mondays and Fridays) and I work from the hospital Tuesday, Wednesday and Thursday. I’m thankful to have such an understanding employer, and this schedule allows me to have two “consecutive” days in the office (Friday and Monday), but still lets me get 2-3 days of hospital time in between so I don’t feel like I’m missing E too much. I also have most of my standing in-person meetings on Mondays and Fridays, and all the others I can easily call into. I’ve discovered the kids’ play room on our floor is quiet, has a desk, and is rarely used (the only kids allowed in the NICU anyway are siblings and they’re probably spending most of their time in their brother/sister’s room), so it’s perfect for taking calls.

I’m still obsessive about pumping (even though I despise it), but I’ve been able to stretch it out to every three hours during the day and and 4-6 hours at night, while still increasing supply. Currently getting about 33-35 oz per day, which is way more than he’s eating right now and we’re running out of freezer space in both the kitchen and the garage freezer!

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Birth, one month, two months.

Birth, one month, two months.

NICU day 31 and 1 month old

Today Emmett is one month old. When Theo was a baby I wrote monthly update posts to keep track of milestones, and while this time around is obviously very different, I’ve decided to start those up again. I don’t have the energy to write a daily post and a monthly update, though, so as long as we’re in the NICU, the monthly updates will be combined with my daily updates.

First, the day 31 update:

Overall, Emmett had a good day, though he had a few more events today after a streak of several days with very few. It wasn’t enough to be concerning, but definitely noticeable. I’m hoping he was just having an off day and this isn’t going to become a trend. Dr. P visited today and let me know she didn’t plan on turning the pressure on his oxygen down for another several days, even though everyone thinks he’s ready. Like the doctor I had talked to yesterday (Dr. B), she too tends to take a more conservative approach. There are several doctors that rotate through the NICU and they all seem to have varying philosophies on how aggressively to proceed. Doctors P and B tend to be on the more conservative side. Dr. L is definitely the more aggressive one, and the others fall somewhere in the middle. I will say, at least right now I’m a lot more comfortable with taking a conservative approach that won’t wear E out and will let him focus on gaining weight. Speaking of, he’s up another 40 grams today and is now a full pound over his birthweight!

Now for the 1 month update:

Adjusted age: 30 weeks 5 days gestational.

Stats: 2 lb 14 oz (I created the image below before tonight’s weigh-in and don’t have the energy to change it) and 14.5 inches.

Milestones: Everything is a milestone at this point. Breathing via high-flow cannula at 21% oxygen is probably the most notable, though

Sleeping: This section will probably be one of the more robust ones subsequent months. As for now… he’s a great sleeper? But he’s supposed to still be a belly baby so that means nothing right now. Since T was such a terrible sleeper, I still have high hopes the universe will give us a good sleeper this time.

Eating: 25ML every three hours via NG tube, plus 28kcal of fortification added to my milk. Pumping still sucks but my supply is doing well.

Personality: Yet another section that will be more robust as time goes on. If it’s even possible to read anything at this age, I think he may be very social like his big brother. He loves being handled and whenever the nurses come around for cares, he gets very alert and stares up at them.

Likes: kangaroo care, sucking on his pacifier or hands.

Dislikes: having his blood drawn.

Mama: has had a really easy recovery. Guess that’s the silver lining of a small baby. Unlike with Theo where I couldn’t sit down for a week, I didn’t even feel like I had given birth the next day this time. I’m about 4 lbs. away from my pre-pregnancy weight, despite the fact that I’m completely ravenous and eating everything in sight. I was like this with Theo, too. Way hungrier while breastfeeding than while pregnant. Gotta love the extra calories making milk burns.

Writing down some of these milestones felt a little silly this early, but it will be good to have a benchmark for future months. I will say, starting these monthly updates made me excited for what’s to come, and for the first time since E was born I’m actually thinking about the future instead of just trying to survive the day.

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NICU day 27

We had another good day today. Emmett is still doing great on the high-flow cannula. With him doing so well, it would be reasonable to start the process of weaning the liters of pressure (he’s currently at six). But the doctor said he’d rather not push him right now and just let him be. If we were to start weaning him, there’s every chance he’d handle it well from a breathing perspective, but may have to work harder, which could slow his weight gain. They may wean him down to five liters as soon as tomorrow.

During his checkup this morning, the doctor could still hear his heart murmur, but that’s actually a good thing. While we have every hope the murmur will resolve itself eventually, if we were to suddenly not be able to hear it, that could actually indicate the hole is getting bigger. The doctor compared it to a garden hose — if you make the opening smaller by putting your thumb over it, it’s louder. If you remove your thumb, the opening is bigger, and the water flows more freely and quietly. So for now, being able to hear the murmur is an indication the hole is still small.

This morning, in a small step toward breast/bottle feeding, I was able to take some milk on a syringe and drop it into his mouth as he was sucking on a pacifier. The idea is to get him to make the association between sucking and eating — something he hasn’t had since he’s been tube fed thus far. He loved it.

This evening at home, I came to the disappointing realization that I’m going to have to deal with excess lipase in my milk again. I discovered this when I was nursing Theo. You can read more that here, but in a nutshell, something like 3% of women (I always end up on the wrong side of statistics), produce too much lipase in their breastmilk — an enzyme that breaks down fat. The result is that the milk takes on a sour and soapy taste very quickly. And while most women can store milk in the refrigerator for four days or freeze it for up to six months, lipase milk goes “bad” much faster than that (the rate of breakdown varies by woman). I use “bad” in quotations because it isn’t harmful; it just tastes bad.

I was told by the lactation nurse a couple weeks ago that just because I had too much lipase last time, doesn’t necessarily mean I’ll have it again. And since Emmett is being tube fed right now, it doesn’t matter what it tastes like. But… since I’ve managed to build up a pretty impressive stash, and we’re just a few weeks away from being able to breast/bottle feed, I decided to test some of my milk tonight to find out if it was affected. Unfortunately, it smelled like soap. Damn. The only way to slow the breakdown when storing it is to scald it (bring it to just below boiling) and then cool it quickly, before freezing. You know, because I didn’t have enough on my plate right now.

So, this evening, I scalded the milk I pumped today and separated all my previously frozen milk. Any of the already frozen stuff we can use while he’s still being tube fed, we will. But anything I freeze going forward will have to be scalded first. After E graduates to normal feedings, I’ll just have to donate any remaining frozen milk from before I started scalding. I was able to do this after I discovered my lipase issue with Theo. And while it was painful to not be able to use all I had pumped, I was happy to be able to give it to a good cause, and that felt better than throwing out all that liquid gold. Milk banks give donated milk to NICUs, and ironically, the same milk bank I had signed up with last time is the one our NICU uses. So if I had been unable to produce milk this time, I would have been able to feed E donated milk from the very same milk bank I had donated to. Karma, right?

That's a lotta milk.

That’s a lotta milk.

 

 

 

NICU day 15

Today was a good day. D spent the night at the hospital last night and said he had way fewer alarms than the last time he roomed in. And today was the same. Fewer alarms are always good! Despite wanting to hold off yesterday on increasing his fortification, the doctor today decided to up it to 26kcal just to see how he did. He did great! He isn’t losing excess water any more, so it seems he’s handling the increase well. And he put on another 20 grams since yesterday, which is awesome.

D and I attended rounds this morning, and there wasn’t a whole lot to report, which is a good thing. We’re in maintenance mode right now. Or as his nurse said to me, “this is the boring part.” I’m totally fine with boring. He’ll have his third and final brain ultrasound on June 18 and will have his eyes checked on June 23rd. Barring any surprises or changes in health, until then they’ll just be fine tuning his breathing assistance and feeding.

Speaking of feeding, I’m finding that I’m getting a little obsessive with pumping output. I’m still a little behind what I should be producing at this stage, but I’m rapidly catching up. The lactation nurse says I should ideally be making 24 oz per day right now and I’m on track to get 21-22 today, up from 19.75 yesterday, which is up from 18.5 the day before. I’m taking fenugreek, drinking mother’s milk tea and trying my best to stay well hydrated. I’m tracking all my sessions on an app that puts everything into graphs and tables for me. I do love me a good graph! Breastfeeding was always something that was so important to me with Theo, and even though I got off to a rough start this time around, I’m trying really hard to make this work. I’ll be the first to admit, I have control issues. And since so much of what we’re dealing with is beyond our control, this is something I feel like I can control, though not without a ton of effort on my part.

E and I had a great kangaroo session today. He did have one brady episode, but aside from that, he was great and we snuggled for more than two and a half hours. I was completely blissed out, and E got down to 21% oxygen and still managed to keep his saturation in the 90s most of the time. In fact, I went home for dinner shortly after our session and came back a few hours later and he was still hanging out happily in his isolette at 21%. It really is amazing what that human contact does for him. And it makes sense. Babies need to be held a lot, and he should still be on the inside – the ultimate hold. It’s just too bad it’s such a process to get him in and out of his isolette and that we can only do it once a day. I’m looking forward to the day I can hold him all the time. I did a lot of babywearing with Theo and I have a feeling I’m probably never going to put E down once I get to take him home.

Bliss.

Bliss.

NICU day 6

It’s 10 p.m. and I’m settling into my evening routine of pumping one last time before bed and recapping the day. I don’t know whether I’ll keep doing daily updates — I’m kind of hoping things get more boring at some point, but for now there are still a fair number of changes each day so here I am.

I spent the night in the NICU last night, after tucking T into bed. Overall, we had a good night. The lactation consultant said I was doing so well with my milk production that I could drop to every four hours at night as long as I was still pumping every two hours during the day. Sleep is good! I did wake up once to Emmett crying, but he is so quiet I can barely hear him and I have no idea how long he had been crying. This isn’t something the nurses monitor unless it sets off his alarms, or he’s loud enough someone hears him from the hall. But since I barely heard him from six feet away, it really made me glad D and I have been making sure one of us is here at night. By the time I woke up and got to E he had worked himself into such a frenzy that he temporarily stopped breathing and his heart rate dipped, setting off all the monitors. He recovered, but those episodes are always a little unnerving. The rest of the night was fine, though, and I think we both slept pretty soundly.

After yesterday’s PICC line removal, the doctor attempted to place a new line today, but couldn’t get it in and so we had to go back to IVs. It was disappointing, but he felt the IV was doing a sufficient job for now, and didn’t think it was urgent enough to force the PICC. He said if they got really desperate they could go in through his groin, but that that would be a little more invasive and not as comfortable for him. To make up for the lack of fluids we would send through the PICC (the IVs don’t handle quite the volume), they decided to increase his breastmilk feedings from 1 ML to 3ML (still every three hours), one day ahead of schedule. He has handled the increased feedings like a champ and was moving everything through his stomach fine, but it still wasn’t coming out the other end. So they gave him a suppository this morning, and another this afternoon after no progress, and he finally had a good poop around 8 p.m. I’m told sometimes their immature little systems just need a bit of a nudge. We’re hopeful things move as they should from here on out.

The great news is that he’s finally starting to gain weight, after pretty steadily losing over the last week. Even after that big poop, he is up 10 grams, so we’re hoping the increased feeds will help him continue to grow and that we’re on the upswing now (even for term babies, it’s normal to lose weight after birth).

His bilirubin levels were a little high again so he went back under the lights this afternoon. They’ll test again in the morning to see if he can come off them.

I got to hold him again tonight, but this time only for about an hour, since he needs to spend as much time as possible under the bili lights. It was still wonderful, but I’m hoping to get a longer hold tomorrow.

Some volunteers from a NICU parents support group stopped by tonight, so that was nice to talk to someone who could relate. The group is run by moms whose children are NICU alumni and they visit every Tuesday. I think this group will probably be an important resource for me. Almost a week later, the shock of what happened is just now starting to wear off, and I think I’m coming to grips with just how long and difficult of a road we have ahead of us. In a quiet moment by myself this afternoon, I suddenly found myself crying out of nowhere. I’m sure the postpartum hormones don’t help, but I’m also feeling a lot of guilt. Guilt for even mentioning in my last pregnancy update post that I was “over pregnancy” and “ready to meet my baby.” (I swear, I didn’t mean RIGHT NOW!) Guilt for not going into L&D a couple days earlier when I first thought something might be off. Guilt for being so reproductively defective. Obviously that last one has nothing to do with anything I actively did or didn’t do, but why does it seem like some people just have so many more challenges than others when it comes to having babies? My OB doesn’t think this is related to our losses in any way, but no one seems to have any theories on why this happened, either. I’m certainly glad we don’t want any more children after this. Because if the miscarriages hadn’t scared me away from getting pregnant again, this sure as hell did.

Anyway, sorry to go down a dark road. Emmett really is doing about as well as he possibly could right now. I just know I will have some stuff to work through for quite a while. D and I both probably will. But tomorrow E is one week old! He took a pacifier today (who knew they made pacifiers that tiny?) and the nurses all marveled about how good his sucking was, which will hopefully help him out when it comes time to breastfeed eventually. He was also quite alert several times today, which was really great to see. In just one week, he has changed so much and I’m looking forward to his continued progress.

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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.

NICU day one.

Emmett is now about 34 hours old and we are learning all there is to know about milestones, life in the NICU and a bunch of other stuff I never thought I’d need to know. I’m going to do my best to keep this blog updated with Emmett’s progress and things we’re learning, even if some of the details may be a bit fuzzy to me. As you can imagine, my head is currently spinning.

Honeymoons and two-steps:

When we arrived yesterday, the doctors and NICU staff warned us right off the bat that the first 24 hours in the NICU tend to be the honeymoon period, and that going forward, it’s common for things to take a “two steps forward, one step back” pattern, even in the best of cases. So we’re learning to strike a balance between positive thinking and realism. That said, everyone has been marveling at how well Emmett has been doing so far!

Goals and milestones:

Long-term (i.e., in order to spring him from this joint), our big milestones we have to hit are: breathing on his own, regulating his temperature on his own, sleeping in a crib and not an incubator (I think this is related mostly to temperature regulation) and all feedings via mouth (breast or bottle, as opposed to IV or tube). There are many, many smaller milestones and sub-milestones, but those are the biggies.

Progress report:

I’m happy to report, E is already making great progress on the breathing front. When he was born, they had to immediately intubate him and hook him up to a respirator that breathes for him. According to the doctors, babies this premature get easily tired and basically forget to breathe. So he has to learn to do it on his own. Earlier today they were able to stop the continuous forced breathing and instead set him up so if he didn’t take a breath every two seconds, the machine would kick on for him and help him. Later this afternoon, they increased that interval to four seconds. They’re basically testing his ability to do it himself by offering less and less help (but always having safeguards in case he doesn’t take a breath on his own). He’s been doing great, and if he continues to do well throughout the night, they will actually remove the breathing tube tomorrow morning (which will allow us to see more of his beautiful face and actually hear him cry!), and put him on a CPAP or a forced-air cannula. These will still offer some assistance and not let him go without oxygen if he were to forget to breathe, but they both allow for a little more independence. They’ve cautioned us that if he doesn’t do as well on that as they’d hoped, there’s always a chance we could have to go back to the breathing tube (again – two steps forward, one step back), but at this point they’re feeling optimistic he can do it.

There’s also a chance tomorrow that they may be able to remove the catheters that are inserted in his belly button that are measuring his blood oxygen level (I think? My head is swimming) sugars and blood gases (just confirmed), and if that happens, we may even get to hold him and do skin-to-skin for the first time. We can hold him with most of his tubes and wires still hooked up, but the belly button ones are particularly fragile, so those have to come out first.

I’m happy to report his bilirubin levels have been pretty good and he isn’t showing signs of jaundice. So no phototherapy needed yet, but that doesn’t mean he won’t need it at some point. It’s still early.

Random learnings:

It’s past midnight now and after just four hours of sleep last night, I think the adrenaline may finally be surrendering to the fatigue, so I’m going to wrap this post with a random brain dump of just a few of the many things we’ve learned about life in the NICU. It’s a whole ‘nother world, for sure…

  1. You will wash your hands raw. Enter a room? Leave a room? Eat? Touch your face or hair? You wash your hands before you do anything and everything. I got an amazing care package from some dear friends yesterday and they thought to include hand lotion. Smart.
  2. It’s hard not to jump every time you hear an alarm. And there are a lot of alarms.
  3. You do start to learn the difference between the really bad alarms (heart or breathing-related, etc.) and the more innocuous ones (for example, the IV station monitor alerts when a bag is half full, then 1/4 full, and then empty. We get it, IV.).
  4. In addition to the alarms in your own room, the monitors in the hallway have alarms for all the patients for safety redundancy, and since doors are almost always open for easy staff access, it’s sometimes hard to tell whether the sound is coming from your room or the hallway. And then you feel relief, followed by guilt for feeling relieved, when you realize it’s not your baby’s alarm that’s sounding.
  5. The NICU staff are truly amazing. I’m already in love with our doctors, nurses and respiratory therapists and we’ve only been here a day. I can already tell leaving them will be a bittersweet and emotional experience. I can only imagine the types of heartbreaking situations these folks deal with on a regular basis. On top of that, they patiently explain everything to parents like me who hover over their shoulder and ask them millions of questions while they’re trying to do their job.
  6. Trying to get your milk to come in via pumping instead of nursing SUCKS. Especially when your boobs thought they had another 14 weeks before they had to perform.
  7. There’s a lot of downtime. We have been told we can touch Emmett when he’s awake, but to let him sleep as much as possible. So for a lot of the day, we’re just sitting here. I’ve kept myself busy keeping friends and family updated, but even if I’m not interacting with E directly, it’s still comforting to just be here beside him. If (God forbid) something went wrong, I would want to be here, and I also want to be here to celebrate every milestone and achievement.
  8. There’s a certain solidarity between NICU families. Whether it’s a weary smile from another parent in the hallway or an email or text from a friend who’s been there (or a friend of a friend, in some cases!), I’m finding a rapidly growing network of others who just get it. Some of the best “therapy” for me so far has been simply hearing success stories of children who got a rough start way too early but are thriving now. There’s actually a wall in the hallway here with photos of beautiful, smiling children of various ages. Under each one is a plaque that states their weight and gestational age at birth. It’s truly beautiful, and brings a smile to my face every time I walk by.

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