After a highly emotional day yesterday and facing the possibility that E could need g-tube surgery, I arrived this morning to find out the nurse had tried a bottle on him and that he ate half his feeding! I was very surprised, considering the physical therapist yesterday thought a bottle would just overwhelm him and cause him to shut down. I was initially a little apprehensive about what introducing a bottle might mean for breastfeeding, but to go from thinking he might need surgery to realizing he probably won’t really put things in perspective and I’m kind of at peace with whatever happens as long as he doesn’t need surgery.
That said, we tried breastfeeding later today and he actually did better than before. I talked to the lactation nurse and she said while the conventional wisdom is that introducing a bottle before breastfeeding is established can sabotage breastfeeding, sometimes it’s just the opposite in preemies, and that giving a bottle can sort of kick start their understanding that sucking can result in food. E did so well with nursing today that we’ve decided to start up the weighted feeds again so they can measure just how much he’s getting via breast. Our plan going forward is to give a bottle 1-2 times per day, breastfeed 1-2 times per day, and the rest will be via feeding tube. As he gets stronger we’ll start doing more breast and bottle and less via tube. What a 180 from yesterday.
Overall it’s been a very good day. Hardly any events, starting to figure out how to eat, and a healthy 54 gram weight gain tonight, bringing him to 6 lbs 7 oz. I really needed that today.
Today I went into the office for half the day and then worked from the hospital in the afternoon. I had a sobering conversation with the doctor this afternoon about E’s feeding progress. I guess maybe I was naive or in denial but I kept thinking any day the light bulb will go on and he’ll figure out how to nurse. But the doctor today gave me some preliminary information about the possibility that E could end up having g-tube surgery. Basically they insert a port in his belly directly into his stomach, so instead of feeding him through a tube that goes down his throat, it goes straight to the source. It’s a semi-permanent solution to chronic feeding issues. In some ways it makes life easier becaue there’s no tube for him to pull out, and while dressed he’ll look just like a normal baby. But… surgery. And the dashed hopes that he’ll just grow out of this. Granted, we’re not quite there yet. The doctor said we still have a few weeks before we start seriously talking about surgery. But the fact that he’s not made any progress after that initial latch a couple weeks ago isn’t good news, either.
The physical therapist stopped by after I talked to the doctor, and I could barely get a few words out to her before I broke down. I’m just so heartbroken. But she’s going to work with us and help us hopefully move toward feeding by either bottle or breast. I had held off on introducing a bottle because I’d really like him to breastfeed — but it’s not even like a bottle would help at this point. In fact, the physcial therapist said she wouldn’t be comfortable giving him a bottle because it would probably overwhelm him and he’d shut down. She gave us a few pacifier exercises to do whenever he’s alert, and then maybe we’ll see if he’s ready to try a bottle in a week or so. Meanwhile, I can keep trying to nurse him a couple times per day. Once we introduce a bottle — IF he even takes it — there’s probably no going back to breastfeeding. But as much as I hate the idea of giving up on breastfeeding, today’s conversation with the doctor certainly put things in perspective. I’ll happily bottle feed over having him go through surgery and feeding him through a hole in his belly.
Of course, we got all this news right before D and I had plans to go to a concert tonight (yes, another one. We had a busy summer planned, thinking I would still be pregnant!). We had a good night out tonight together, though I kept spilling my soul to anyone who would listen. I guess I was a real buzz kill tonight.
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 good, and pretty uneventful. I think I only saw him desat twice all day. The lack of alarms going off sure is nice.
We got to nurse twice today and it was just okay. Not as good as yesterday. He just didn’t seem all that interested and only latched a few times. He is starting to wake up before feeds though, which is good because that means he’s actually feeling hungry. The downside is that I didn’t get a lot of sleep last night because he was waking up crying every three hours. But I guess that’s like having a normal newborn, so I can’t complain too much.
Another good day today. I was at work for most of it, but the report from D was all good news.
After dinner tonight I came back to the hospital to nurse E at his 8:30 cares. Tonight was the first time we did a weighted feed. According to the scale, he got 4 ML from me, which is only about 8 percent of his total feed and he needs to be taking 80 percent to have his feeding tube removed. I don’t put a lot of stock in that number, though. For one, I felt really rushed by the nurse. He only nursed for about a half hour and I felt like he could have gone much longer but I was tired of her bugging me. I know she’s got a schedule to stick to and she had to push the rest of his feed by tube after getting his post-breastfeeding weight, but I think she should have given us a little longer. Theo used to regularly take 45 minutes or more to nurse when he was little, and he was a full-term baby. The other thing is, I don’t have a lot of faith in the scale. In fact, the first post-feed weight showed that he had lost 2 grams, which isn’t physically possible since he didn’t even have a diaper change in between. So the nurse weighed him again, and that’s when it showed the 4-gram gain, and that’s the number she went with. It seems she could have checked a third time to corroborate the numbers, and if it was off with his post-feed weight, it certainly could have been off with his starting weight. It’s not like I think we’re anywhere close to getting 80 percent via nursing yet, which is why I didn’t push the issue. But as E gets more efficient and I think he could actually be getting closer to a full feed, I’ll push back with the nurses more if needed, and will demand they recheck their weight if the numbers don’t look right.
Speaking of weight, Emmett gained 18 grams tonight, bringing him to 6 lbs 1 oz.
Today was a good day. Last night was another fussy night because of the reflux, but we’re still seeing way fewer events.
The best part of the day was that we had a major breakthrough in breastfeeding. Part of that is definitely thanks to the tongue tie clip, but a big part is thanks to the nurse who suggested we try nursing with a nipple shield this morning. Without going into too much detail (because my coworkers and father-in-law read this blog), the nipple shield helps create a shape that makes it easier for a baby with a tiny mouth and under-developed muscles to latch onto (think more bottle nipple than human nipple), and also helps reach the roof of their mouth, which stimulates their sucking reflex. The difference was like night and day, and he actually nursed for about 15 minutes straight instead of the on-off-repeat cycle we’ve been on.
Unfortunately, toward the end of his feed, he had a pretty big brady. The nurse said that’s a common issue for preemies. The whole suck-swallow-breathe thing can be tricky for preemies to coordinate and he must have forgotten to breathe temporarily, which made his heart rate drop. The nurse warned us we could start seeing those pretty frequently now with feedings, which is kind of disheartening. Just when we overcome one hurdle, a new one presents itself.
The rest of the day went really well. I came home around noon and D headed back for the afternoon and will stay there tonight. I’m happy to report we have officially reached 6 lbs!
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 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!
Keeping up with the Hoffmans 