NICU – Page 4 – Keeping up with the Hoffmans

NICU day 71

July 28, 2016August 7, 2018 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.

Baby Emmett, breastfeeding, friends & family, NICU

NICU day 70

July 28, 2016August 7, 2018 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

July 26, 2016August 7, 2018 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

July 25, 2016August 7, 2018 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.

Baby Emmett, breastfeeding, NICU

NICU day 67

July 24, 2016August 7, 2018 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!

Baby Emmett, breastfeeding, NICU

NICU day 66

July 23, 2016August 7, 2018 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

July 22, 2016August 7, 2018 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.

Baby Emmett, NICU

NICU day 64

July 21, 2016August 7, 2018 Keeping up with the Hoffmans

This morning I arrived at the hospital to find Emmett completely off oxygen! D and I had gone to a concert last night (our first night out together since E was born) and apparently the nurse had taken him off oxygen shortly after I left the hospital yesterday evening. He did great overnight and was doing fantastic when I got there, so I had high hopes this would finally work (even though we had taken him off oxygen once before, only to have to put him back about 12 hours later). Unfortunately, a few hours later (and after I had already posted to Facebook bragging he was off oxygen support), it was clear he was getting tired and desatting more than normal again, so they put him back on. He’s still only at 1/64 of a liter, which is virtually nothing, but apparently that “nothing” makes all the difference to him. My brain knows he’s making big strides and it’s only a matter of time before he’s off oxygen for good. But my heart hurts. I really got my hopes up this time.

He otherwise had a good day. That 1/64 of a liter is really so minimal, yet just what he needs right now, and he had a very boring afternoon with much fewer desats than average. D went back to the hospital after dinner tonight and said he’s been doing well this evening too. He gained an impressive 118 grams tonight, bringing him to 5 lbs 11 oz.

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Baby Emmett, breastfeeding, NICU

NICU day 63

July 20, 2016August 7, 2018 Keeping up with the Hoffmans

Today was a pretty good day. They were able to drop E down to 1/64 on his oxygen tank, which is virtually nothing, and his oxygen saturation looked really good most of the day. For a little while it was bouncing up then down, but it never stayed at either end, and by late afternoon it was more steady than I’ve seen it in weeks.

I got to try breastfeeding twice again today. The morning session was a bust; afternoon was a little better. The lactation nurse stopped by for the afternoon session and we had a long chat about plans and expectations. I felt much better after talking to her. She said we’re doing everything right, and that all we can really do is keep practicing. Some babies just take a while longer to figure it out, especially one born as early as E and with as many breathing problems. The whole suck-swallow-breathe coordination is surprisingly complicated for a preemie. She also thinks getting his tongue tie clipped will help, so I’m both looking forward to and dreading that. It’s a quick procedure, but I’m sure it’ll hurt.

It was a relatively uneventful day, which was nice for a change.

Baby Emmett, NICU

NICU day 62

July 19, 2016August 7, 2018 Keeping up with the Hoffmans

This morning I woke up excited to try breastfeeding again after last night’s progress. Unfortunately, Emmett had other plans and showed virtually zero interest when the nurse put him on me. It was really disappointing. The nurse and I agreed we’d try again later, and I’m happy to say this afternoon was a much better experience, similar to last night. Like last night, he still isn’t completely getting it, but he was making an effort, and latched a few times. I think the big difference was catching him when he was wide awake. Until he really gets the hang of it, I think trying to nurse him while he’s sleepy is going to be futile and we’re going to have to be more opportunistic about trying when he’s alert. Now that he’s latching, though, I’m noticing just how much his tongue tie is going to affect his ability to effectively nurse, and so the doctor and I agreed they’d clip it in the next few days.

While talking with the doctor today, she also recommended we reconfigure his breathing support. Whereas he had been on 1 liter of oxygen, anywhere from 21 to 30 percent concentration, she instead recommended we try an oxygen tank at 100 percent, but drop the pressure way down. In theory, the lower flow but higher oxygen concentration should give him just the boost he needs to keep his saturation up, while reducing the amount of forced air into his nose, causing him less irritation and congestion. Also, if he were to have to come home on oxygen (still hoping that’s not the case), it would be a similar setup as this — a portable tank with higher concentration and less pressure. They started it at almost no pressure, but then ended up having to bump it up to 1/4 liter after he had a couple apnea episodes this afternoon, and then up to a 1/2 liter after another big apnea tonight. If he doesn’t tolerate that well overnight, he’ll go back to his previous configuration. Two steps forward, one step back, I guess.

Late this afternoon, we got the news that E would have another eye exam at 6 p.m. I knew it was coming up soon, but these exams always seem to sneak up on me. It was just as horrible and torturous as the previous two, but I’m happy to report his stage 1 ROP has resolved itself so we never have to repeat that awful exam again! I can’t help but think the eye exam is at least partially to blame for his regression tonight. He tends to have a rough time after those.

Weight was up 44 grams tonight, bringing him to 5 lbs 7 oz.

I can't stop kissing his fuzzy little head. — I can’t stop kissing his fuzzy little head.

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