Today I had to go into the office, and D wasn’t able to be at the hospital either, so E spent most of the day alone. I got here around 7 this evening and checked in with the nurse to get a report on his day. One big brady/desat (reset that clock by 5 days again), and about 50 percent of his feeds by bottle (not too shabby). Unfortunately when I nursed him tonight he only took in 6 ml, which is just 10 percent. It’s frustrating, to say the least. On the plus side, he’s up to 6 lbs 12 oz.
He was pretty grunty this evening. He’s kind of a grunty baby in general, thanks to the reflux, but tonight he seemed especially uncomfortable. When I picked him up, he would calm down, but as soon as I’d set him down, he’d start up again. He really likes to be held. I can’t wait until he’s wireless and I can walk around or go find a comfortable spot to sit and cuddle him. Because he’s tethered to all the monitors, I can’t take him very far, which means I usually just stand next to his bassinet to hold him.
Anyone who’s ever been pregnant (to term) will tell you that the ninth month of pregnancy lasts approximately 68475840383758202 years. I’m beginning to think the same is true for that final stretch of NICU life. Since the day Emmett was born, the doctors and nurses have all told us to plan to be here until around his original due date. Sometimes babies go home sooner, sometimes later, but the due date is a pretty average target for a release date when you have a preemie, particularly a really early one. And I think I was okay with that until Sunday when we were teased with the possibility of an early release. Since then E has slipped back into his old ways. Frequent but minor desats, occasional bradys, lack of progress on the eating front. On the bright side, he’s off oxygen still. But it’s looking like these feeding issues will be the final hurdle.
I’m just exhausted and I’ve hit my wall. I know we’re almost done, and he really is doing well. But for some reason I’m having a harder time now than I ever have. I just want him healthy and home so we can begin normal life.
Today Emmett took a step backward from the great progress he’s been having. He had one brady overnight, which automatically reset our jailbreak clock back to five days. He also had a lot more desats today. They were all quick and not terribly low, and it’s not enough to put him back on oxygen just yet, but they also wouldn’t send us home if he were still doing that. He was also just really sleepy today and not very interested in eating. The nurse said he was probably just really tired from all the progress we’ve made in a short amount of time, and that this rebound effect is very typical of a preemie after making such big strides forward.
So it looks like we’re not as close to going home as we originally thought. He’s still doing really well, considering all he’s been through. But it was a bummer to realize he’s not going home in the next few days like we thought he may be. That said, this rebound could be short-lived and we could see him start trending upwards again very soon. It’s kind of a wait and see game at this point. He’s up to 6 lbs 10 oz now and doesn’t fit in most of his preemie clothes anymore.
After the drama late last night with E’s bad reaction to his shots, the nurse ended up putting him back on wall oxygen at 1 liter and gave him some Tylenol for his fever. He actually ended up having a pretty calm overnight and a relatively uneventful day today. This morning they were able to put him back on the tank and gradually turned him back down to 1/64 liter and he stayed there the rest of the day. He still had a fair number of desats today, but they were brief and only into the low 80s/occasionally high 70s — nothing like the scary 32 percent desat he had last night.
I had a pretty long conversation with his doctor today, and he feels confident last night was just a bad reaction to the vaccines, and that the worst is behind us. He also believes by the time his four month shots come around, he’ll be big and strong enough to handle them without any major issues. I’ll definitely bring it up with his pediatrician when the time comes to see if she recommends staggering them at all instead of doing them all at once. I will say, despite what happened last night, I’m still 100 percent pro-vaccine and believe the benefits far outweigh any negatives. As scary as last night was for me, he was in good hands and never in any real danger. At the end of the day, I trust his doctors know what they’re doing, and I trust that his pediatrician will know what to do in two months.
Another interesting conversation I had with his doctor today was around his progress and eventual release. He surprised me by stating the only thing still keeping him here are his feeding issues. He’s gaining weight like a champ (and is up another 40 grams tonight, bringing him to 6 lbs 4 oz), and he’s on the lowest oxygen support possible — a level of support we could actually go home with (though I’d still prefer not to, and the doctor thinks it’s unlikely we will either). The occasional desats E has are a product of shallow breathing and breathing pauses, but not any central apneic issues — and we’ve seen firsthand that bumping up his oxygen eliminates them altogether. The doctor said IF we had to bring him home on oxygen, they’d have us turn it up to somewhere around 1/8 liter, which is more than he needs, but would ensure he didn’t desat. So in theory, he could figure out nursing tomorrow and go home in a few days. Which is crazy. Also, highly unlikely. The more likely scenario is that he will take a few more weeks to figure it out, during which time he’ll kick his oxygen habit altogether as well. To be honest, I’d be okay spending a few more weeks here and getting to bring him home completely healthy and “wireless.” As long as this road has been, it would feel like it wasn’t quite over — like part of it had followed us home — if he came home still on oxygen.
It’s exciting to see how close we’re getting. I’m looking forward to closing this chapter on our lives and leaving the NICU behind for good.
Today was mostly good, but ended pretty rough. E got his two-month vaccines this morning and had been having a few more desats all day, but they were all brief and nothing too low — mostly mid-80s and only for a few seconds. Then late this evening, he suddenly started having a ton, along with a few bradys. At one point his oxygen dropped down to 32 percent, which was really scary for me. It’s never gone that low before. His temperature was also 38.2C (100.8F). The nurse wasn’t too worried and said sometimes babies just don’t react well to vaccines and that he’d be better in a couple days. She ordered him some Tylenol for the fever, which should also help with his desatting (he was holding his breath because he’s uncomfortable, which was causing his oxygen to drop). She turned his oxygen up to 1 liter (it had been at 1/64 all day) to give him a boost, and that seemed to help.
He’s now sleeping in my arms and satting at 100 percent, which is higher than it should be, but they don’t want to turn it back down until he proves he’s doing better. It’s after midnight and I’m exhausted, but I’m afraid to put him back down. It’s going to be a long night.
Last night I spent the night at the hospital. Like the night before when D had stayed, Emmett had a pretty long night of just general fussiness. The good news is, he’s having way fewer events than he has lately. But that reflux is just brutal. He spent pretty much the entire night grunting, punctuated by the occasional crying spells. So I didn’t sleep well and was up a lot. It was kind of like … having a newborn.
This morning, after a quick attempt at breastfeeding (still not really getting it), I left the hospital to meet D at the pool for Theo’s swim lessons. Since I was running late, I decided to pump on the way, something I’ve done many times. I’ve mastered the art of pumping and driving. I have a hands-free setup, so I simply get everything situated before I start the car, and then unhook once I get to my destination. I usually wrap a cardigan around myself so it’s not so obvious to the cars next to me. Well, I may have been driving a little fast, trying to make it to the pool on time (I bet you can guess where this is going). Yeah. I got pulled over. While pumping.
I had a moment of panic when I saw the lights. Although a cardigan is sufficient cover from drivers in the lane next to me who probably aren’t looking too hard into my windows, the thin, semi-sheer fabric didn’t exactly hide the outline of my pumping shields. Or the noise of the pump, for that matter. So much awkward. Thankfully, I think it was even more awkward for the police officer, who quickly let me off with a warning. I think he wanted to get out of there even faster than I did.
I had a good day with Theo, watching him swim, and then meeting up with some friends with kids his age for lunch and play time. Then I had to rush back to the hospital (once again pumping in the car, but this time paying close attention to the speed limit!), so I could meet the doctor for E’s frenectomy (tongue tie clip). I was nervous about the procedure, but it ended up being very quick and he hardly cried at all. The eye exams were 100 times worse. They immediately put him on me afterward to nurse — both for comfort and because they want him extending his tongue as much as he can right away. It went a little better than this morning’s session. He’s still kind of a lazy nurser (which will hopefully improve with practice and maturity), but I could already tell his latch was improved, so I’m hoping we continue to make forward progress.
He’s still hanging out on the oxygen tank at 1/32 liter and hardly having any events (knock on all the wood). He got a bath this evening — first time in the sink — and did pretty well. Weight was up 58 grams, bringing him to 5 lbs 15 oz. He very well may crack 6 lbs tomorrow!
I went into the office today so I didn’t get to see Emmett until after dinner tonight. D said he had a pretty good day. A few desats around feeding, but otherwise pretty uneventful. He said he had kind of a fussy night, though, and that he didn’t get much sleep. I’m staying the night tonight, so we’ll see how he does. Right now he’s napping peacefully on my chest. He had a quick brady shortly after I got here, but has been pretty steady on his oxygen saturation. I did notice his tank is set at 1/32 instead of 1/64. The nurse said he had been desatting a little earlier, so they gave him a little bump.
Breastfeeding went pretty well tonight — comparatively, anyway. He’s still not really getting it, but he latched better tonight than he has been, and I think he kind of surprised himself when he actually got some milk! I can see the wheels turning and hope it clicks for him soon.
Weight was up 52 grams, bringing him to 5 lbs 13 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!
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.
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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.