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.
I spent the night at the hospital last night and got up with E at every cares, attempting to nurse. He did absolutely nothing at 11:30 p.m. and 5:30 a.m., which was disheartening. At 2:30 a.m. I thought he actually did pretty well but when they weighed him afterward he had only taken in a measly 4 ml (his normal feed volume is 60 ml). I almost cried. I’m really starting to get discouraged with this whole feeding thing. He did so well last weekend that they were talking about springing us soon, and now he’s totally regressed.
I left the hospital late morning to meet up with some girlfriends for brunch. I brought T with me so he could play with my friend’s kids at her house. It was a good afternoon with good friends and a needed break from the hospital and feeding issues. After T’s nap, he and I went back to the hospital in time for 5:30 p.m. cares. D met us there with dinner and then took T home so I could stay the night again tonight. At one point during our 5:30 feed I had two lactation consultants hovering over me giving me pointers, occasionally grabbing a boob and helping me reposition. It’s safe to say I’ve lost all sense of modesty (or what I had left after birthing two babies, anyway). The good news is, I think we just may be starting to get our groove back on feeding (knock on all the wood). He ended up taking in 12 ml at 5:30 and 22 ml at 8:30. After the single-digit feedings he’s been having, I’ll take it. Please, please let this be the beginning of figuring it out again.
At one point last night Emmett pulled out his feeding tube. I got a picture of him before the nurse put it back in. Seeing him without the feeding tube made me even more eager to get these feeding isssues resolved. He’s so cute with a naked face! He’s up 54 grams tonight, bringing him to 6 lbs 14 oz.
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.
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 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.
Keeping up with the Hoffmans 