Today was kind of a rough day. Emmett’s reflux is getting pretty bad. He isn’t spitting up much, but it is backing all the way up into his nose, which creates massive boogers, which causes him to have trouble breathing, which causes him to desat. He’s also clearly in a lot of pain over it, and he grunts and cries a lot. Because of all the desatting, there was some talk about putting him back on caffeine, or possibly increasing his oxygen support again, but after talking with the doctor, he said it’s not really a lung issue; it’s just the reflux. The caffeine would likely make it worse, and the extra oxygen support wouldn’t even really do much good. We may start him on antacids though.
Breastfeeding was a little discouraging today. He was pretty sleepy and didn’t latch as much as he did yesterday, and having him laying sideways made his reflux worse, so after a few minutes we gave up and I held him upright, but shortly after that he needed his nose suctioned because he was having difficulty breathing. It’s just been a draining day. I know the reflux isn’t anything terribly serious; it’s more uncomfortable for him than anything. But it’s just so draining.
On a positive note, weight was up another 62 grams. He is now 5 lbs!
Today had its ups and downs. After yesterday’s conversation with E’s team, I was excited to get to the hospital today and try breastfeeding. When I mentioned it to the nurse this morning, though (a new nurse we’d never had before), she said, “we usually don’t try that with babies who have breathing problems.” I instantly felt disappointed — and a bit defensive. First of all, he’s on 1 liter of oxygen and we were told we could try nursing once he got down to 2. Second of all, he has chronic lung disease, so by her standards we’d never breastfeed. Third, despite the CLD, he’s been doing pretty well lately (and the doctor said he’d hesitate to even label him CLD at this point since he responded so well to the steroids) so her “breathing problems” comment rubbed me the wrong way. Thankfully I was able to talk to the lactation consultant, who was still on board with trying today, and the doctor was in agreement this was the right time too. So the nurse finally agreed.
The nursing went pretty well. He would latch and then fall off, latch and fall off, and then went to sleep after about 20 minutes of this. So I don’t think he really got much and they didn’t bother weighing him before and after to check, but the LC said it was a great effort for his first time, considering how little he still is. Our plan is to do this once a day until he starts to get the hang of it, and then we’ll kick off the official 72 hour breastfeed. Meanwhile, he’s still getting full meals via feeding tube.
Unfortunately, his reflux seems to be bothering him quite a bit today. He was desatting a ton and he just sounds so uncomfortable when he breathes. This evening at one point he even sneezed and milk shot out his nose. It had been over an hour since his last feed so it was all his previous meal that was backed up all the way into his nose. It’s frustrating listening to him snort and grunt and not be able to help him.
This evening I went to barre for the first time since before I gave birth. It was good to be back, but I definitely felt like I hadn’t been there in two months! I am definitely going to be sore tomorrow, but it feels good to work out again. I’m back to my pre-pregnancy weight, but I just feel squishy. I need to build up some muscle tone again. I grabbed a quick beer with my friend after class and then headed back to the hospital for the night. I have a feeling we’re in for a long night with all the snorting and desat alarms.
Weight was up 78 grams tonight, bringing him to 4 lbs 13.5 oz.
Today was another pretty good day. Emmett’s desats were brief and infrequent, and he only had one brady that I saw, which was also quick. He still gets pretty uncomfortable with the reflux, but he doesn’t seem to be desatting as much as a result, so maybe it’s either improving or he’s learning to deal with it. They increased his feeds to 41 ML and he put on 64 grams tonight, bringing him to 4 lbs 11 oz.
I had a good conversation with E’s nurse, physical therapist and the lactation consultant about breastfeeding today. As I’ve mentioned before, being able to nurse E is so important to me, and I’m nervous because preemies often struggle to breastfeed. Many preemie moms end up having to pump exclusively, or switch to formula, despite their best efforts to nurse. To compound my fears, E isn’t really cueing the way he should for us to start nursing. He’s been scoring 2s and 3s on nursing readiness, when he needs to be getting 1s and 2s. But today his team thought we should give it a try tomorrow anyway. They said sometimes babies don’t exhibit obvious hunger cues on their own, but when faced with an actual boob, they figure it out. So we’ll give it a shot tomorrow. I’m keeping my expectations low, but am glad we’ll at least try. The process will take a nurse, a lactation consultant and a physical therapist (that sounds like the start of a bad joke), so I’m sure there will be plenty of awkwardness. It’s a good thing after birthing two babies I’ve pretty much lost my modesty and dignity, anyway!
We had another good day. Relatively uneventful in itself, though we are on the cusp of some pretty big milestones and I had some good conversations with the nurse about our plan of attack.
As far as today goes, the biggest news of the day is that they turned his oxygen flow down to 2 liters. So far he’s handling the change very well and doesn’t seem to even notice the difference. His weight was up another 11 grams this evening, bringing him to 3 lbs 13 oz. In just two weeks he has put on a full pound, which is fantastic.
As for the big stuff on the horizon … we learned today that in about another week he could both be in a crib, and be breastfeeding. We knew these were possibly coming soon, but today we got some more specifics on how the transition for each works.
For the crib, the first criterion is size. It usually happens around 1800-2000 grams, but 1600 grams is the minimum weight. He’s currently 1728 grams. The second and more important factor is temperature. Currently his isolette is set at 27º Celsius (80.6º Fahrenheit) and it needs to be able to maintain his body temperature for 24 hours at 23-25º C (73.4-77º F). They’ve already started dropping the temperature on his isolette a little each day, so as long as he keeps handling the change without a drop in body temperature, they think he’s on track to be in a crib in about a week. This is particularly exciting because then we can put clothes on him and can pick him up whenever we want, instead of having to schedule one long hold each day.
For breastfeeding, sometime around week 33 or 34 (he’ll be 33 weeks on Monday), they’ll start scoring him on a scale of 1-4 every time they come in for cares. 1 means he’s awake and showing strong hunger cues like sucking on his hands or rooting. 2 means he wakes up when he’s handled and shows some hunger cues. 3 means he’s briefly alert with cares but shows no hunger cues, and 4 means he sleeps through cares with no hunger cues. If he goes 24 hours with all 1s and 2s then they start the “72 hour breastfeed” which is like breastfeeding bootcamp. During this time they want me around as much as possible so I can nurse him whenever he’s hungry. After those 72 hours they are fine mixing breast and bottle, but those first 72 hours are critical to breastfeeding success. Since it will take a while before he’s eating efficiently they will weigh him before and after each feed, subtract the amount he’s taken in via nursing and make up the difference with the tube. Once he’s getting 80% of his feeds via breast or bottle, they will remove his feeding tube. It can be a long process and we’ve been told this could very well be one of the things that keeps us here until close to his original due date as he learns to work for his food.
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.
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.
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?
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.
Today was a relatively uneventful day, as far as E is concerned. They increased his feedings to 9 ML every three hours. Tomorrow they’ll go up to 12 ML and will also start fortifying with a high-calorie supplement to help him put on weight. Speaking of weight, he is finally officially back to his birthweight. Actually, he’s a little above (860 grams vs 840 grams, but still rounds out to 1 lb. 14 oz.). So that’s all good news.
His breathing was a little all over the place today. For much of the day he was on 21 percent oxygen, which is essentially room air. But he had a few desaturations, so they’d turn his oxygen up a bit. But then he’d be hitting 99-100 percent oxygen (sweet spot is between 88 and 98 percent), so they’d turn his oxygen down. Repeat, repeat. It was a bit of a dance, trying to keep a balance. He had a few more brady episodes today (heart rate drops), but not nearly as many as we had yesterday. We got to do kangaroo care again today around 2 p.m. for almost two hours and it was blissful like yesterday. My sister-in-law came to visit for a bit this morning, and our friend Matt cooked us dinner this evening at our house. I’m back at the hospital and will be staying the night. It’s pretty quiet here right now and the night nurse is someone I like. Overall, it was a good day.
The one sour part of my day was fighting with insurance. I have been trying for a week to get a breastpump sent to me (thankfully the hospital has given me a loaner in the meantime). The issue is, I need a hospital-grade pump, and the insurance company seems to think that’s not necessary. It drives me absolutely batty that the people in charge of approving or denying insurance claims don’t even have the medical knowledge that should be required to do so. My insurance plan clearly states that a hospital grade pump is covered when medically necessary. And since prescribing a hospital grade pump is nationwide standard protocol for preemies — and I have a preemie — you’d think this would easily fall under the “medically necessary” category. A regular pump isn’t typically good enough when you’re trying to bring in your milk: A) by solely pumping and not nursing (nursing is much more effective) and B) weeks or (in my case) months ahead of schedule.
When I’d initially called to order the pump last Friday, they’d said they were shipping it Monday. When it hadn’t arrived by Tuesday, I called, only to find out I’d been denied (thanks for notifying me?). The insurance rep kept asking me if I had tried a regular pump first and I had to keep repeating myself that that’s not what my doctor prescribed. At one point she even asked me if I’d tried “just nursing him.” (Uh.) They told me my doctor needed to provide a statement of medical necessity – which is pretty much what I thought the prescription was, but okay, fine. So I called my doctor and explained what I needed. No problem, they’d send that over that afternoon. When I still hadn’t received my pump today, I called again. They claimed they had never received the statement of necessity. I had my doctor send it again. They still claimed they hadn’t received it. But then changed their story and said because it was previously denied, I couldn’t file the claim again for a year. I ended up escalating to a supervisor, and an hour later, they finally agreed to cover it. I’m still fuming. With everything I’m going through right now, this is really the last thing I need to be worrying about. The part that makes me so angry is you know they knew they should be covering it. I’m pretty sure insurance companies deny things and “lose paperwork” on purpose because they know a lot of people won’t fight it or will give up.
Now that I’ve gotten that off my chest, I’ll end this post on a positive note with a couple photos. Because it really was a good day overall.
Tiny hand.
Tummy time (note, despite the fact that you aren’t supposed to put infants on their tummies to sleep, it’s actually good for preemies and helps them with their breathing – just thought I’d point that out so no one worries! 🙂
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.
Keeping up with the Hoffmans 