NICU day 59

This morning the doctor prescribed Emmett a prednisone nasal drop to help with the inflammation. He’ll take it twice a day for 7 days. They also put him on a fast-acting diuretic for two days, twice a day to help with lung inflammation and edema. If we don’t see improvement, may look into a longer-term diuretic.

After a rough night last night, I was both looking forward to getting away from the hospital, and dreading leaving Emmett at the same time. The fact that Theo has swimming lessons on Saturday was a good excuse to get away. Sometimes I need that extra nudge to peel myself away. While I was gone, his breathing got so bad again that the nurse decided to suction him even though we’ve been trying not to as much because of the inflammation. It’s a good thing she did, because she got what she described as a “gremlin” from his nose that had formed a complete plug. No wonder he couldn’t breathe. She said she was so impressed with the size that she called the doctor in to take a look!

Unfortunately, both his cannula and the feeding tube may be exacerbating his congestion. The feeding tube is giving all that refluxed milk something to cling to, and the cannula is blowing dry air in, which is basically the perfect recipe for monster boogers that are so far back in his nasal/throat area that they’re really difficult to suction out. We have some humidity on the cannula, but it’s still drier than if he were just breathing room air. The feeding tube also keeps his esophageal sphincter slightly open, which can exacerbate the reflux. Unfortunately, life is basically one giant catch-22 right now. We can’t remove the cannula until he’s having fewer events, and we can’t remove the feeding tube until he gets the hang of breast/bottle feeding. But the reflux and difficulty breathing are inhibiting feeding and causing events. And around we go.

We may try another round of systemic prednisolone, since he responded so well last time. If we do, they may try removing his cannula toward the end of the course while it’s still in his system. Meanwhile all we can do is try to keep breastfeeding him whenever he’s alert and hungry, but he’s working so hard to breathe right now that the nurse described it as like you or I trying to do aerobics and eat at the same time. Our attempt at breastfeedng today was a complete bust, so after about 20 minutes I just pulled him up into a kangaroo hold. Despite my disappointment over continued breastfeeding failures, he ended up having a really good rest of the afternoon. He was calmer than I’d seen him in a couple days while on my chest, and hardly had any desats. Those steroid drops really made a huge difference with his congestion, and while he’s still bothered by the reflux, at least he’s breathing clearly now. His weight was up 24 grams tonight, bringing him to 5 lbs 1 oz.

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NICU day 40

Emmett had a pretty rough night last night. D was with him and said his alarms were going off all night. This morning we met with the doctor who told us Emmett has chronic lung disease, or bronchopulmonary dysplasia. He turned his oxygen flow back up to 4 liters and ordered a chest x-ray to be sure, which confirmed the diagnosis. It was upsetting to hear the word chronic. Contrary to what we’ve been told all along, this may not be something he simply grows out of. The doctor recommended putting him on a 10-day dose of prednisolone and we agreed. The other options were to put him on a diuretic to drain the fluid from his lungs, or to turn his oxygen flow back up even higher — but that would reverse a lot of the progress we’ve made thus far on weaning his respiratory support and could put off breastfeeding even longer. So we’re hoping the prednisolone helps, but it’s very possible this may be an ongoing issue for him and the doctor said in some cases babies with CLD even go home on oxygen. I’m feeling pretty defeated.

On a positive note, his red blood cell count was good today so he got to come off the Epo. We had a good kangaroo session today with very few events and he seems to be doing well this evening. He’s back to 21% oxygen and satting in the high 90s for the most part, with the occasional brief desat. He lost 10 grams tonight, which isn’t super surprising after several days of high gains. He also missed at least part of his 5:30 p.m. feeding because he pulled his feeding tube out yet again when I went home for dinner, and the nurse didn’t realize it until she went to check on him and the tube was out and there was milk all over him and his bed. Something tells me this kid is going to be a trouble maker.

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NICU day 39

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!

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The face of contentment.

NICU day 38

Today was another emotional day. After taking T swimming this morning, I headed back to the hospital after lunch and found out they had lowered E’s oxygen flow to 3 liters — after discussing with D just last night that they were going to keep it at 4 for another couple days. The nurse said he’d been doing really well on it, so I didn’t push the issue. I was a little annoyed at the lack of communication and continuity between the night team and the day team, but if E was handling it fine, I guess I was fine with it too.

I hadn’t even been there more than 20 minutes when he had his first brady. I chalked it up to a random episode (he’s allowed to have those), or maybe an adjustment to the lower flow — but then he had another shortly afterward. I was beginning to get concerned, but tried to brush it off. Then when I was holding him, he had about five of them in a 45 minute span. I couldn’t hold back my tears – I felt like he was crashing on me – and the nurse came in and took him from me to put him back in his isolette. It was all very emotional. She suctioned his nose, hoping maybe he just had a booger (that caused some issues for us once before), but his nose was clear. Then she noticed his feeding tube had come partway out. She said that can sometimes cause a vagal nerve response, which was a likely culprit of our episodes. She pulled the tube out and reinserted (not fun to watch), and he seems mostly good since then. She also turned his oxygen back up to 4 and said we’d try again later. This time I spoke up and advocated that we give him at least another day and let him rest. He’s had a few additional bradys since the tube was repositioned, but the nurse said he may have just been worn out from the day’s events. Really hoping that’s the case, and the culprit was just his NG tube earlier. Who knew a rogue feeding tube could cause so much drama?

As much as I hated to leave him, I’ve been feeling incredibly guilty about all the time I’ve been spending away from T lately, so I went home to have dinner with the family. Since the nurse and I had agreed we’d try holding again after his 8:30 p.m. cares, I had to rush back to the hospital shortly after dinner. T didn’t take it very well and refused to even give me a hug goodbye. After the day I’d already had, this shattered my heart into a million pieces. I asked if he was mad at me because I had to go to the hospital again and he said yes. I hugged him (even if he wouldn’t hug me back) and left the house in tears. When I got to the hospital I saw a text from D telling me Theo was crying because he wanted to give me a hug. So we Facetimed for a few minutes and he was his sweet self again. I even held the phone up to E’s isolette so T could say good night to his brother. It was all very sweet and I’m glad it ended well, but the mom guilt is on overdrive these days. I feel a strong need to be with both of my boys all the time and I simply can’t.

This evening went better than the afternoon. I got to hold him for three hours and he did pretty well, though he still had a few events. He put on an impressive 87 grams tonight, which equals about 3 oz. in just one day! He’s now 3 lbs. 8 oz.

I really hope these last few trying days mean we’re about to move forward again. I’ve referred numerous times to the “two steps forward, one step back” mantra in the NICU. And the nurse tonight gave me another analogy: she said progress in the NICU is rarely linear. It’s more like loop-de-loops — you’re still going forward, but you’re looping backward on yourself in order to do so.

Hopefully Emmett doesn’t pull his NG tube out again — though this video was taken not even five minutes after it was reinserted, and I’m starting to think it may be hard to get him to leave it alone!

NICU day 37

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.

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NICU day 36

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.

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NICU day 35

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.

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NICU day 33

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.

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Wide awake – and looking so much like big brother!

NICU day 32

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.

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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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