We had a pretty sleepy night last night. The nurse ended up just gavaging Emmett at every feed except one, during which he nursed vigorously for about five minutes and then was out cold. He took in 12 ml, which isn’t a lot, but I thought was pretty good for just five minutes.
This morning, Dr. L came to visit and announced we have a new plan. Even though he’s nowhere close to the 80 percent feed volume we were aiming for in order to remove the NG tube, he decided to remove it now anyway and do a 48-hour trial of feeding on-demand. He thought maybe the strict three hours between feeds wasn’t giving him a chance to get hungry (for the record, I’ve been saying this all along!!), and the fact that he takes in near-full volumes some feeds and practically nothing others means he’s capable of taking a full feed but just might not be hungry sometimes. So the new plan is to nurse or bottle-feed whenever he actually acts hungry, regardless of how long it’s been since the last feed, but not to go any longer than four hours. This is basically what you’d do with a normal newborn anyway, and most newborns figure out how to eat what they need to grow, so we’re hoping he does the same. If after 48 hours he’s losing weight or not wetting enough diapers, they’ll put the feeding tube back, and we go back to our original plan of aiming for 80 percent orally and gavaging the rest.
We’ve had three of the on-demand feeds today and the jury’s still out on whether the new plan is working. So far he’s definitely eating more at each feeding, but he’s also going pretty close to the maximum four hours in between feeds — which means instead of eating 65 ml every three hours, he needs to be eating 85 ml every four hours in order to take in the same daily volume. So percentage-wise, we’re pretty much even with where we were before. At least so far. I feel like three feeds is too soon to tell and that once he realizes he dictates when he eats his patterns may change.
I must say, it feels nice to have a new plan since we weren’t making much progress the old way. At least it feels like we’re doing something. And if it doesn’t work, it was nice to have a naked-faced baby for a while.
I was in the office most of the day today, so Emmett got mostly bottles, which should have pulled our daily average volume up, except today’s nurse subscribed to the “let him rest every other feed” school of thought, which dragged our average down. We’re sitting at 42 percent for the day (remember, we need to get to 80 percent to remove the feeding tube). Side note: I may have created a spreadsheet to track his feed volume, with formulas to calculate the running 24-hour average, and a detailed analysis of breast versus bottle volume. What can I say, I love me a good spreasheet.
I got back to the hospital tonight in time to nurse him at his 9 p.m. cares. This is usually our best feed of the day since they do a naked weigh-in just before, which tends to wake him up. He nursed for 45 minutes and got an impressive 52 ml from me! I wanted to high-five him. He’s also up another 26 grams, bringing him to 7 lbs 4 oz.
It’s a slow crawl to the finish line, but the little victories are what keep me going.
Today was a pretty good day. We had some good nursing sessions, and he seems to be getting more comfortable at the breast, but because we did more nursing than bottle feeding, and because we’re still getting less volume while nursing, our oral feedings average dropped from around 60 percent to about 40 percent.
I had a good talk with both the nurse and lactation consultant today and asked them to give it to me straight: should we just be focusing on bottle feeding so we can go home? Both told me the same stat: that bottle-fed NICU babies go home an average of about a half day sooner than breastfed babies. One half day. In the grand scheme of things, does a half day make a difference? I know this is an overall average, which means our situation could yield different results, but the nurse and LC both acknowledged how important breastfeeding is to me, and recommended we continue practicing both bottles and nursing while we figure out feeding. Because out in the wild, he’ll ideally take a combination of breast and bottle anyway. To completely stop breastfeeding just so we can go home a little earlier might make breastfeeding at home that much harder and increase our chances of giving up altogether. What’s a couple more days, for an easier time over the next year or longer?
At the end of the day, this final NICU stretch is preparing us for home life, and the more we can replicate patterns we plan follow at home, the smoother the transition will go. I’ve had numerous nurses tell me what we’re experiencing is textbook for an early preemie; that feeding issues are nearly always the final frontier, and that babies usually have an easier time with a bottle than nursing.
Hearing this is typical makes it easier to handle, but not necessarily less frustrating. I’ve said it before, but if only we hadn’t been teased two weeks ago with the possibility of early release! After all, we’re still about a week and a half away from our original due date of August 22, which is what I’d been mentally preparing for all along. Now, if we go past that date and we’re still here, I may start handling this with less grace!
Emmett is 12 weeks old today. Hard to believe we’ve been here almost three months.
Today was a pretty good day. Feeds are going much better and he even took a few full feeds via bottle last night! We are averaging around 60 percent orally, and you may remember we need to get to 80 percent over 24 hours to remove the feeding tube (though E tried to get a head start and pulled it out again himself today). The bottle feeds are definitely higher volume than the breast feeds. In fact, if you exclude the breast feeds from his averages, we’re already at 80 percent. This, of course, has me all kinds of hyperanalytical. Should we just focus on bottles for now so we can go home? Or would we ever recover from that if we did? I know babies who were able to figure out how to nurse later, but for many, lack of nursing is the beginning of the end of breastfeeding and once they get used to the relative ease of bottle feeding, it’s hard to go back. Plus, I won’t have the luxury of weighted feeds at home, or lactation consultants just down the hall to help. Can I nurse him at home and be confident he’s getting enough? Am I willing to potentially give up breastfeeding just to go home a few days sooner? Is my own stubbornness in my desire to breastfeed keeping him here longer than necessary? Lots to think about.
I love how he sleeps with his arms up. T used to sleep like this too.
We had an okay day on the feeding front. After E’s 22 ml feed last night, he was pretty sleepy overnight so they just pushed the full volume through his feeding tube at his midnight and 3 a.m. feeds. At 6 a.m. he looked like he might be ready to go, but then pretty much instantly fell asleep and only got 2 ml from me. At 9 a.m. he was raring to go and took an impressive 44 ml, though, to make up for it! So I know he’s got it in him; it truly does seem to be a stamina issue. His noon and 3 p.m. feeds were 10 and 12 ml, respectively, and much sleepier. I left to pick up T before the 6 p.m. feed, and will stay home tonight. Anxious to find out how he does with bottles tonight.
Interestingly, there appear to be two schools of thought on how to address the sleepy/stamina issue. Our nurse yesterday and the day before had us attempting breast or bottle every other feed, and just gavaging the others to let him rest. Today’s nurse (a different one), said even if he only gets a few ml and falls asleep, the practice is good for developing those muscles, so we nursed every feed. I can see the merits to both approaches, and don’t know what the best way is. I just wish there were some magic bullet so we could figure this out and go home!
Feeding is going better. Yesterday we were averaging 17 percent via mouth and today we’re up to 34 percent. They started alternating feeds via bottle and feeding tube, and that seemed to strike a good balance between letting him practice and letting him rest. I went into the office today and got to the hospital this evening just in time to feed him at his 8:30 cares, and he took 22 ml via breast, which is about 37 percent of his feed volume. We still have a long way to 80 percent, but it’s good to see things trending upward.
He gained another two ounces tonight and is up to 7 lbs 1.5 ounces. He’s really come a long way.
Well, we didn’t turn the corner on feeding today like I’d hoped. He was pretty sleepy for most of his feeds today so they just fed him through a feeding tube for most of them, though he did take 12 ml from me early this morning, and 35 ml via bottle this evening. The nurse today was talking about the possibility of putting him back on oxygen, which would be really disappointing. He seemed to me he was doing really well with his breathing, but the nurse said he may be working so hard to breathe that he has no energy or stamina to eat. I hate the idea of putting him back on oxygen. I know it’s normal to take steps forward and backward during this process, but that would be a huge step backwards, and would mean we’re even farther from being discharged than I thought. They weren’t going to make any changes today, but would discuss more tomorrow. I just keep hoping he figures it out one of these days.
Weight was up 40 grams tonight, bringing him to 6 lbs 15 oz. Now that he’s the size of a full-term newborn I’m less interested in the weight gain, and more in his feed volume. It’ll be nice to stop obsessing about numbers at some point.
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.
That’s about it for today. Onto day 80…
Today Emmett is 37 weeks adjusted, which means he’s officially a full-term baby now. He did pretty well with his bottles last night and today, and this evening he nursed a full feed. He’s averaging about 60 percent of his daily volume orally, and we need to get to 80 percent before the feeding tube comes out and we start the clock for his release. I was able to clarify the other criteria – five days without a major event – and confirmed it started at last event … which was five days ago (!!!), so we are good to go on that front, as long as he continues to behave.
Today was jam packed at work trying to wrap up as much as I can and organizing all of my projects so I can hand them off. It’s hard because I feel like I’m still catching up after being gone those six weeks after E was born, so I’m feeling a little bit panicked about getting everything squared away for a second leave!
I also gave notice at daycare that we will be pulling T while I’m home on leave. We had debated whether to keep him in or not, and I was initially leaning toward keeping him in at least part time. But daycares are germ factories and we will be playing things a little cautious for a while, so we’ll just keep him home. I’m anticipating extreme exhaustion in my future, staying home with a toddler and an infant. Going back to work may very well feel like a vacation!
They removed E’s nasal cannula today around 11:30 a.m. We’ve done this twice before and both times he’s made it about 12 hours before he gets tired of breathing and needs support again. It’s almost 11:30 p.m. now and he’s still doing well. His weight was good too (he’s up to 6 lbs 8.5 oz), which is a good indicator he isn’t having to work too hard. I like seeing more of his face, and with any luck the feeding tube will be next to go!
Today we had a major breakthrough on feeding, and they are suddenly talking about sending us HOME soon. I can’t believe I’m typing those words.
This morning, I woke up to one of my favorite nurses bringing us some intersting news. He said he and the rest of the team huddled and we have a new plan: instead of giving a bottle 1-2 times per day and breastfeeding 1-2 times like we discussed yesterday, we’re going to either nurse or bottle feed at every feeding. They think E can handle it and don’t want to lose momentum. So when I’m there, I’ll breastfeed. When D is there, he’ll give a bottle. And if neither of us is there (which is rare), one of the nurses will give a bottle. They subtract whatever he gets from breast or bottle and push the remainder via his NG tube.
So this morning, we started up the weighted feeds again (weighing E before and after nursing to figure out how much he got). At our first feed he took in 14 ml (his normal feed is 57 ml). Second feed was 22 ml. Third feed was 54 ml, and fourth was 56! He took 22 ml via his bottle tonight. Everyone is shocked at how quickly we’ve turned the corner. To think we were talking g-tube surgery just two days ago. If he goes 24 hours taking 80 percent of his feeds by breast or bottle, they’ll remove his NG tube. If he keeps this up for 48 hours, we can start feeding on demand. If he goes 5 days without a major event, we can go home. We hadn’t had anything since Thursday, as far as I know, so I need to clarify when the clock starts, exactly — now or since last event?! He’s still on oxygen, but they are going to trial him off of it again tomorrow. I have everything crossed he handles it this time (third time’s a charm?), but even if he doesn’t, he’s on a low enough level that he can come home with an oygen tank, if needed.
I think we’ve been here longer than any other baby in the NICU currently, and news spread quickly that E may be going home soon. This afternoon, several nurses who have taken care of Emmett over the past 10+ weeks stopped by our room to see us and a couple of them teared up. Of course, so did I. It’s really bittersweet to be thinking about leaving these amazing people who are responsible for my baby’s life. I don’t know how I can ever thank them.