I didn’t get to spend a lot of time with E today — D spent the night last night and we had two birthday parties to take T to today. After getting home from the second birthday party, I rushed to the hospital just in time for his 5:30 cares. He was very alert so we decided to try breastfeeding again. It went better than yesterday and he latched a few times, but he still isn’t really getting it, which is discouraging. The nurse thinks it’s fine, considering how eventful the past few days have been for him, but I’d be lying if I said I wasn’t worried that he might not ever get the hang of it. It’s a very common preemie problem.
The good news is, the nurse said he had a pretty good day today, and he had a really great evening with me too. His breathing sounds clear and he doesn’t seem quite as bothered by the reflux as he had been. The nurse still had to suction him earlier this afternoon, but I have hope things are starting to look up. Weight dropped 12 grams, but that’s not surprising, with him on the diuretic. Still holding steady at 5 lbs 1 oz.
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.
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.
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.
Keeping up with the Hoffmans 