Tag: micropreemie

Baby Emmett, breastfeeding, NICU

NICU day 77

Keeping up with the Hoffmans

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.

Baby Emmett, breastfeeding, NICU

NICU day 76

Keeping up with the Hoffmans

Today was a good day. As I’ve mentioned before, we’ve done two trials off oxygen before, and both times he made it about 12 hours before he got tired and needed it back. I’m happy to report we passed the 12-hour mark. And then the 24-hour mark. And then they removed his tank altogether from his room because it was clear he was rocking it on his own. Yeah!

Feeds were kind of hit and miss today. I nursed him at every feed except the 2:30 a.m. feed, during which I slept and the nurse gave him a bottle. He’s averaging about 60 percent of his feeds by mouth currently. One was as high as 84 percent and one was as low as 24 percent. So we’ve still got some work to do to get to the required 80 percent over 48 hours. He seems to prefer breast over bottle, which as the nurse pointed out, is a nice problem to have. He will take both, though, which has been the goal all along.

We’ve been talking to Theo a lot about E coming home, now that we’re getting closer. I know there will be an adjustment period while he learns how to share us (or maybe we’ve already begun that since D and I have been splitting our time?), but so far he is really excited. His daycare teachers say he’s been talking a lot about “his” baby too. He’s been asking for a few days to go see baby Emmett so I picked him up after school today and brought him back to the hospital. I nursed E while T sat and played a game on the iPad. Aside from the fact we were in a hospital room, it felt really normal, and I got a glimpse of what it might be like on a random afternoon at home with my boys.

This evening they moved us to the pediatric wing, which we have been told is a springboard for going home. The room is nicer and bigger, and is meant for rooming in (we get an actual bed instead of a daybed/cot), as they like parents doing more and nurses less as we get closer to discharge.

He lost half an ounce at his weigh-in tonight, which is a bummer, but not surprising. Over the past two days he’s gone from having most of his food delivered straight to his belly to having to work for every meal. Hoping he keeps getting stronger and more efficient at eating, so we can finally go HOME. Tomorrow we’ll have been here 11 weeks.

Theo helping the nurse move little brother down the hall
Baby Emmett, breastfeeding, NICU

NICU day 75

Keeping up with the Hoffmans

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!

Baby Emmett, breastfeeding, NICU

NICU day 74

Keeping up with the Hoffmans

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.

Baby Emmett, breastfeeding, NICU

NICU day 73

Keeping up with the Hoffmans

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.

Baby Emmett, breastfeeding, NICU

NICU day 72

Keeping up with the Hoffmans

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.

Baby Emmett, breastfeeding, NICU

NICU day 71

Keeping up with the Hoffmans

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.

IMG_2085

Baby Emmett, breastfeeding, friends & family, NICU

NICU day 70

Keeping up with the Hoffmans

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.

Baby Emmett, breastfeeding, NICU

NICU day 69

Keeping up with the Hoffmans

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.

Gained 54 grams tonight. 6 lbs 3 oz.

Baby Emmett, breastfeeding, NICU

NICU day 68

Keeping up with the Hoffmans

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.

IMG_2059