This morning I arrived at the hospital to find Emmett completely off oxygen! D and I had gone to a concert last night (our first night out together since E was born) and apparently the nurse had taken him off oxygen shortly after I left the hospital yesterday evening. He did great overnight and was doing fantastic when I got there, so I had high hopes this would finally work (even though we had taken him off oxygen once before, only to have to put him back about 12 hours later). Unfortunately, a few hours later (and after I had already posted to Facebook bragging he was off oxygen support), it was clear he was getting tired and desatting more than normal again, so they put him back on. He’s still only at 1/64 of a liter, which is virtually nothing, but apparently that “nothing” makes all the difference to him. My brain knows he’s making big strides and it’s only a matter of time before he’s off oxygen for good. But my heart hurts. I really got my hopes up this time.
He otherwise had a good day. That 1/64 of a liter is really so minimal, yet just what he needs right now, and he had a very boring afternoon with much fewer desats than average. D went back to the hospital after dinner tonight and said he’s been doing well this evening too. He gained an impressive 118 grams tonight, bringing him to 5 lbs 11 oz.
Today was a pretty good day. They were able to drop E down to 1/64 on his oxygen tank, which is virtually nothing, and his oxygen saturation looked really good most of the day. For a little while it was bouncing up then down, but it never stayed at either end, and by late afternoon it was more steady than I’ve seen it in weeks.
I got to try breastfeeding twice again today. The morning session was a bust; afternoon was a little better. The lactation nurse stopped by for the afternoon session and we had a long chat about plans and expectations. I felt much better after talking to her. She said we’re doing everything right, and that all we can really do is keep practicing. Some babies just take a while longer to figure it out, especially one born as early as E and with as many breathing problems. The whole suck-swallow-breathe coordination is surprisingly complicated for a preemie. She also thinks getting his tongue tie clipped will help, so I’m both looking forward to and dreading that. It’s a quick procedure, but I’m sure it’ll hurt.
It was a relatively uneventful day, which was nice for a change.
This morning I woke up excited to try breastfeeding again after last night’s progress. Unfortunately, Emmett had other plans and showed virtually zero interest when the nurse put him on me. It was really disappointing. The nurse and I agreed we’d try again later, and I’m happy to say this afternoon was a much better experience, similar to last night. Like last night, he still isn’t completely getting it, but he was making an effort, and latched a few times. I think the big difference was catching him when he was wide awake. Until he really gets the hang of it, I think trying to nurse him while he’s sleepy is going to be futile and we’re going to have to be more opportunistic about trying when he’s alert. Now that he’s latching, though, I’m noticing just how much his tongue tie is going to affect his ability to effectively nurse, and so the doctor and I agreed they’d clip it in the next few days.
While talking with the doctor today, she also recommended we reconfigure his breathing support. Whereas he had been on 1 liter of oxygen, anywhere from 21 to 30 percent concentration, she instead recommended we try an oxygen tank at 100 percent, but drop the pressure way down. In theory, the lower flow but higher oxygen concentration should give him just the boost he needs to keep his saturation up, while reducing the amount of forced air into his nose, causing him less irritation and congestion. Also, if he were to have to come home on oxygen (still hoping that’s not the case), it would be a similar setup as this — a portable tank with higher concentration and less pressure. They started it at almost no pressure, but then ended up having to bump it up to 1/4 liter after he had a couple apnea episodes this afternoon, and then up to a 1/2 liter after another big apnea tonight. If he doesn’t tolerate that well overnight, he’ll go back to his previous configuration. Two steps forward, one step back, I guess.
Late this afternoon, we got the news that E would have another eye exam at 6 p.m. I knew it was coming up soon, but these exams always seem to sneak up on me. It was just as horrible and torturous as the previous two, but I’m happy to report his stage 1 ROP has resolved itself so we never have to repeat that awful exam again! I can’t help but think the eye exam is at least partially to blame for his regression tonight. He tends to have a rough time after those.
Weight was up 44 grams tonight, bringing him to 5 lbs 7 oz.
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!
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.
I had the below post all written out last night, and then things took a turn for the dramatic. It was by far the worst night I’ve had with him yet. The reflux has been getting worse and worse, and he’s had so much suctioning to remove everything that keeps accumulating in his nose, that he’s now developed some irritation in his nose from all the suctioning. His nasal passages got so swollen last night that he could not breathe out of them at all. Babies are obligate nasal breathers, so it’s not like when an adult is stuffed up and just breathes out of their mouth instead. So he would turn purple holding his breath, then gasp and cry out (which thankfully would get some oxygen in him), but then he’d repeat all over again. I felt so helpless. All I could do was stand there holding him upright, sobbing, while listening to him gasp for air. This all went on until about 2 a.m., when the doctor gave him some steroid drops in his nose to calm the inflammation. That at least allowed him to get some air through, but he’s still really struggling to breathe and just sounds so miserable.
Anyway, here’s the rest of what I had originally written yesterday. I don’t have the energy to merge the two or rewrite anything.
* * * *
This morning Emmett’s team started him on Prevacid [edit: I had originally written Prilosec – oops, wrong med!] to help him with the reflux. It will take a few days to see whether it makes a difference. I’m really hoping it does, as it’s pretty miserable seeing him so miserable. This evening his nurse mentioned we would take him off of it if it didn’t seem to be making a difference, “because of the potential side effects.” When I asked her what the side effects were, she kind of stumbled and admitted she didn’t, know and then said I could just google it. Um. Not impressed with this nurse so far. What medical professional tells you to google? Of course google came up with all kinds of awful stuff. I’ve been so good about not consulting Dr. Google when it comes to Emmett, which is very unlike me, so I’m kind of annoyed she sent me in that direction. A few minutes later the nurse came back and said she talked to the doctor and he said the side effects are so rare that they aren’t even worth mentioning unless something seems off with him or he stops growing. Reflux is really common in preemies — and even in term babies — and the treatment with antacids is pretty common.
Speaking of growth, he had a wimpy 2 gram gain tonight, but they’re actually happy with a modest gain, as he’s been a little puffy the last couple days and they think he may be retaining water. He’s had several days of large gains, which would corroborate the edema. The nurse earlier today was even talking about starting him on a diuretic to flush him out. I need to talk to the doctor more about this, as the nurses have been fairly vague and I hope it’s not indicative of something potentially more serious.
Theo came to visit his little brother this evening. I had gone into the office today and after work I got him from daycare and we swung by the hospital for a few minutes. He hadn’t seen him since he got out of the isolette and immediately asked where the top of his bed was. He was happy to see that baby Emmett was bigger, and when I picked him up and crouched down low to the ground so T could get a better look, unprompted, he kissed the top of E’s head. I wish I had gotten a photo, but my arms were full of baby. It was a very sweet moment.
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!
Keeping up with the Hoffmans 