E had a good feeding day today. He hasn’t had to be straight gavaged since 3 p.m. yesterday and he took several full bottles today. I went into the office so I didn’t get to nurse him until 9 p.m. this evening, but he took about a half feed from me, which isn’t terrible. He definitely does better with the bottles. We ended our day at 72 percent of all feeds orally, which is great! Of course, since I’ll be here tonight and most of tomorrow, the breastfeeding will bring down our average. The analytical side of me hates to see those numbers plummet on a day where I nurse more than bottle feed, but the side of me that really wants breastfeeding to work wants to practice at every chance we get. Conflicting emotions, for sure.
Either way, it’s clear that E is starting to get stronger. He was very alert during his feeding tonight and I even put him back in his crib still awake. He very well may sleep through his midnight feeding, but it’s good to be making noticeable progress. Inching along…
Today was a pretty good day on the feeding front. I went into the office so D was here with him and he got mostly bottles for the day, though we did have one good nursing session after his 9:00 cares tonight. He ended his day at 64 percent of his total feed volume orally, which is great, considering we’ve been averaging closer to 40 percent lately.
It’s a step in the right direction, but it’s a painfully slow process. He is 39 weeks gestational today, which means we are exactly one week away from my original due date. All along we’ve been told my due date is a pretty good estimate for when we can expect to be discharged, but it’s looking more and more like we may be here past that date, which is a tough pill to swallow. It’s possible he could rapidly improve and we could be out of here in a few days, but it’s unlikely at this point.
E turns three months on Thursday and is up to 7 lbs 7 oz now. Onto day 90…
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 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.
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 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.
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.
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!
I didn’t get to see much of Emmett today since I went into the office and didn’t get back to the hospital until around 9 p.m., after tucking T into bed. But D was with him most of the day and said he did really well. This evening I overheard one of the doctors telling a nurse that E was “a great steroid story.” He really is showing a great improvement after being on the prednisolone. I’m still waiting to see if he rebounds at all, but he’s really doing great. The bad news is he lost 12 grams today, but we haven’t had a loss in a while so I’m okay with that. He’s still 4 lbs!
This evening I picked him up on my own for the first time, which was so nice. He was fussing and I just walked over and scooped him up and rocked him for a few minutes, then put him back. It was a very ordinary baby thing to do, and it was wonderful. Getting out of the isolette was a game changer. Like I said yesterday, he really feels more like ours now.
That’s about all there is to say about today. Blissfully boring.
Keeping up with the Hoffmans 