Tag: preemie

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.

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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.

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Baby Emmett, breastfeeding, NICU

NICU day 67

Keeping up with the Hoffmans

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!

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Baby Emmett, breastfeeding, NICU

NICU day 66

Keeping up with the Hoffmans

Last night I spent the night at the hospital. Like the night before when D had stayed, Emmett had a pretty long night of just general fussiness. The good news is, he’s having way fewer events than he has lately. But that reflux is just brutal. He spent pretty much the entire night grunting, punctuated by the occasional crying spells. So I didn’t sleep well and was up a lot. It was kind of like … having a newborn.

This morning, after a quick attempt at breastfeeding (still not really getting it), I left the hospital to meet D at the pool for Theo’s swim lessons. Since I was running late, I decided to pump on the way, something I’ve done many times. I’ve mastered the art of pumping and driving. I have a hands-free setup, so I simply get everything situated before I start the car, and then unhook once I get to my destination. I usually wrap a cardigan around myself so it’s not so obvious to the cars next to me. Well, I may have been driving a little fast, trying to make it to the pool on time (I bet you can guess where this is going). Yeah. I got pulled over. While pumping.

I had a moment of panic when I saw the lights. Although a cardigan is sufficient cover from drivers in the lane next to me who probably aren’t looking too hard into my windows, the thin, semi-sheer fabric didn’t exactly hide the outline of my pumping shields. Or the noise of the pump, for that matter. So much awkward. Thankfully, I think it was even more awkward for the police officer, who quickly let me off with a warning. I think he wanted to get out of there even faster than I did.

I had a good day with Theo, watching him swim, and then meeting up with some friends with kids his age for lunch and play time. Then I had to rush back to the hospital (once again pumping in the car, but this time paying close attention to the speed limit!), so I could meet the doctor for E’s frenectomy (tongue tie clip). I was nervous about the procedure, but it ended up being very quick and he hardly cried at all. The eye exams were 100 times worse. They immediately put him on me afterward to nurse — both for comfort and because they want him extending his tongue as much as he can right away. It went a little better than this morning’s session. He’s still kind of a lazy nurser (which will hopefully improve with practice and maturity), but I could already tell his latch was improved, so I’m hoping we continue to make forward progress.

He’s still hanging out on the oxygen tank at 1/32 liter and hardly having any events (knock on all the wood). He got a bath this evening — first time in the sink — and did pretty well. Weight was up 58 grams, bringing him to 5 lbs 15 oz. He very well may crack 6 lbs tomorrow!


Baby Emmett, breastfeeding, NICU

NICU day 65

Keeping up with the Hoffmans

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.