Category: Baby Emmett

Baby Emmett, monthly updates, NICU

NICU day 31 and 1 month old

Keeping up with the Hoffmans

Today Emmett is one month old. When Theo was a baby I wrote monthly update posts to keep track of milestones, and while this time around is obviously very different, I’ve decided to start those up again. I don’t have the energy to write a daily post and a monthly update, though, so as long as we’re in the NICU, the monthly updates will be combined with my daily updates.

First, the day 31 update:

Overall, Emmett had a good day, though he had a few more events today after a streak of several days with very few. It wasn’t enough to be concerning, but definitely noticeable. I’m hoping he was just having an off day and this isn’t going to become a trend. Dr. P visited today and let me know she didn’t plan on turning the pressure on his oxygen down for another several days, even though everyone thinks he’s ready. Like the doctor I had talked to yesterday (Dr. B), she too tends to take a more conservative approach. There are several doctors that rotate through the NICU and they all seem to have varying philosophies on how aggressively to proceed. Doctors P and B tend to be on the more conservative side. Dr. L is definitely the more aggressive one, and the others fall somewhere in the middle. I will say, at least right now I’m a lot more comfortable with taking a conservative approach that won’t wear E out and will let him focus on gaining weight. Speaking of, he’s up another 40 grams today and is now a full pound over his birthweight!

Now for the 1 month update:

Adjusted age: 30 weeks 5 days gestational.

Stats: 2 lb 14 oz (I created the image below before tonight’s weigh-in and don’t have the energy to change it) and 14.5 inches.

Milestones: Everything is a milestone at this point. Breathing via high-flow cannula at 21% oxygen is probably the most notable, though

Sleeping: This section will probably be one of the more robust ones subsequent months. As for now… he’s a great sleeper? But he’s supposed to still be a belly baby so that means nothing right now. Since T was such a terrible sleeper, I still have high hopes the universe will give us a good sleeper this time.

Eating: 25ML every three hours via NG tube, plus 28kcal of fortification added to my milk. Pumping still sucks but my supply is doing well.

Personality: Yet another section that will be more robust as time goes on. If it’s even possible to read anything at this age, I think he may be very social like his big brother. He loves being handled and whenever the nurses come around for cares, he gets very alert and stares up at them.

Likes: kangaroo care, sucking on his pacifier or hands.

Dislikes: having his blood drawn.

Mama: has had a really easy recovery. Guess that’s the silver lining of a small baby. Unlike with Theo where I couldn’t sit down for a week, I didn’t even feel like I had given birth the next day this time. I’m about 4 lbs. away from my pre-pregnancy weight, despite the fact that I’m completely ravenous and eating everything in sight. I was like this with Theo, too. Way hungrier while breastfeeding than while pregnant. Gotta love the extra calories making milk burns.

Writing down some of these milestones felt a little silly this early, but it will be good to have a benchmark for future months. I will say, starting these monthly updates made me excited for what’s to come, and for the first time since E was born I’m actually thinking about the future instead of just trying to survive the day.

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Baby Emmett, NICU

NICU day 30

Keeping up with the Hoffmans

It’s been kind of a hectic evening in the NICU. Emmett is fine, but there was a delivery that required almost all hands on deck around 10 p.m. (I’m sure that was me a month ago!), and it’s been chaos and hustling and loud beeps and alarms ever since. I had to close my door because I don’t really want to know what’s going on, in case it’s not good. Feeling really thankful for private rooms right now. My heart goes out to those parents because I know just how scared they must be.

A byproduct of this dramatic delivery is that Emmett’s nurse got called away and we got temporarily stuck with the roving nurse that just fills in on people’s breaks. She didn’t position him very well for his feeding (and didn’t even realize his feeding tube was wrapped around his neck until I pointed it out), and then shortly after she left, Emmett started spitting up while on his back and went into a pretty big desat. No one even came to check on him until I had to go flag down another nurse. No clue where the roving nurse was. E seems to be comfortable now, but I’m spent. People keep telling us to get away and take some time for ourselves, but then stuff like this happens and I wonder how long he would have been spitting up and desatting before someone came to help him? I know this is a very good hospital and I’m sure the NICU staff know what they’re doing, but there’s just no substitute for having a parent in the room with him.

Other than an eventful evening, today was actually pretty good overall. Emmett had his feeding tube moved from this mouth to his nose again, which just looks so much more comfortable, lets us see more of his face, and allows him to get his hands to his mouth like normal babies. I think we may have a thumb sucker! He put on another 30 grams last night, and 20 more tonight, so he’s now up to 2 lbs 13 oz. They’ve also increased his feeds to 25ML.

Despite the fact that he’s doing great on five liters of flow in his cannula, the doctor decided to give him another day to rest and grow before going to four. I ran into the doctor in the kitchenette this evening and he said all the respiratory therapists are basically begging him to let them lower the flow, though, because E is such a rock star and can handle it. He probably can handle it, but there’s really no rush. Even if we weaned all the way off respiratory support way ahead of schedule, it’s not like we’re going home next week. And we’re still 2-3 weeks away from E being developmentally ready to breastfeed, which would be the only other reason to push for less flow. I’m totally fine with this doctor’s more conservative approach.

It’s after midnight and I’m exhausted. Things are still fairly chaotic here but I’m going to attempt to get some sleep anyway.

Thumb sucker.
Thumb sucker.
Baby Emmett, NICU

NICU day 29

Keeping up with the Hoffmans

Today was a pretty good day. Emmett went from 6 liters of pressure to 5 in his nasal cannula. He handled the transition pretty well. He had a few more episodes today, but the team said that was to be expected.

We’re also down to three hours between cares again instead of four. Three is the standard; they had only gone to four before because they were worried about his weight gain and wanted him to rest more. But even though he has been going up and down on his weight over the last few days, the overall trend is still upward, so they were comfortable going back to three. And that makes holding him between cares easier on me!

Onto day 30…

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Baby Emmett, NICU

NICU day 28

Keeping up with the Hoffmans

Emmett is now four weeks old. I sound like a broken record but time has really flown, yet it also feels like we’ve been here forever. If we’re going by due date as our planned release date, we’re about 1/3 of the way there, so that’s promising.

E is still doing fantastic in the breathing department. They decided to give him one more day at 6 liters on the high-flow and will step him down to 5 liters tomorrow. He is also still having very few events, compared to just a week ago. He had two self-recovered bradys today that I’m aware of, and one of them didn’t even include a desat (usually he desats right after a bradycardia event).

Unfortunately we did get the news today that his red blood count is very low, and since he’s already on the maximum dose of iron, they’re moving onto something a bit more aggressive: Epogen – an injectible protein that causes your body to generate more red blood cells. So if Emmett wins the Tour de France he won’t pass any blood doping tests. The hope is that the Epo will help him avoid a blood transfusion, which carries more risks. The main risk factor with Epogen is an increased risk of ROP (retinopathy of prematurity – a degenerative eye disease) – but that risk is usually higher in babies closer to 33-34 weeks, when the eye’s blood vessels are rapidly growing. Babies are also at much higher risk of ROP when they’ve been on high levels of oxygen for an extended period of time. Since he’s never spent much time on high levels and has been on room air for several days now, the doctor felt he was a prime, low-risk candidate for the Epo. They will administer it three times per week for two weeks and then recheck his levels. With any luck he’ll be off the Epo before he reaches that 33-34 week stage where his eyes are at a higher risk anyway.

Another small thing we dealt with today was some jumping blood sugar levels. First they were high, then they were low, and then they were normal. They are going to recheck in the morning, but didn’t have any idea why they might be doing that. They didn’t seem too concerned, but I get a little uneasy with the lack of explanation.

They didn’t weigh him last night until after midnight, so I didn’t include that in yesterday’s entry, but he went up a whole 70 grams! But then tonight he lost 30, which we kind of expected after such a huge jump yesterday. Still, he’s up to 2 lbs 11 oz — almost a pound above his birthweight! Keep growing! He will be one month old on Saturday and I would love nothing more than for him to hit the 3 lb mark. #squadgoals

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Baby Emmett, breastfeeding, NICU

NICU day 27

Keeping up with the Hoffmans

We had another good day today. Emmett is still doing great on the high-flow cannula. With him doing so well, it would be reasonable to start the process of weaning the liters of pressure (he’s currently at six). But the doctor said he’d rather not push him right now and just let him be. If we were to start weaning him, there’s every chance he’d handle it well from a breathing perspective, but may have to work harder, which could slow his weight gain. They may wean him down to five liters as soon as tomorrow.

During his checkup this morning, the doctor could still hear his heart murmur, but that’s actually a good thing. While we have every hope the murmur will resolve itself eventually, if we were to suddenly not be able to hear it, that could actually indicate the hole is getting bigger. The doctor compared it to a garden hose — if you make the opening smaller by putting your thumb over it, it’s louder. If you remove your thumb, the opening is bigger, and the water flows more freely and quietly. So for now, being able to hear the murmur is an indication the hole is still small.

This morning, in a small step toward breast/bottle feeding, I was able to take some milk on a syringe and drop it into his mouth as he was sucking on a pacifier. The idea is to get him to make the association between sucking and eating — something he hasn’t had since he’s been tube fed thus far. He loved it.

This evening at home, I came to the disappointing realization that I’m going to have to deal with excess lipase in my milk again. I discovered this when I was nursing Theo. You can read more that here, but in a nutshell, something like 3% of women (I always end up on the wrong side of statistics), produce too much lipase in their breastmilk — an enzyme that breaks down fat. The result is that the milk takes on a sour and soapy taste very quickly. And while most women can store milk in the refrigerator for four days or freeze it for up to six months, lipase milk goes “bad” much faster than that (the rate of breakdown varies by woman). I use “bad” in quotations because it isn’t harmful; it just tastes bad.

I was told by the lactation nurse a couple weeks ago that just because I had too much lipase last time, doesn’t necessarily mean I’ll have it again. And since Emmett is being tube fed right now, it doesn’t matter what it tastes like. But… since I’ve managed to build up a pretty impressive stash, and we’re just a few weeks away from being able to breast/bottle feed, I decided to test some of my milk tonight to find out if it was affected. Unfortunately, it smelled like soap. Damn. The only way to slow the breakdown when storing it is to scald it (bring it to just below boiling) and then cool it quickly, before freezing. You know, because I didn’t have enough on my plate right now.

So, this evening, I scalded the milk I pumped today and separated all my previously frozen milk. Any of the already frozen stuff we can use while he’s still being tube fed, we will. But anything I freeze going forward will have to be scalded first. After E graduates to normal feedings, I’ll just have to donate any remaining frozen milk from before I started scalding. I was able to do this after I discovered my lipase issue with Theo. And while it was painful to not be able to use all I had pumped, I was happy to be able to give it to a good cause, and that felt better than throwing out all that liquid gold. Milk banks give donated milk to NICUs, and ironically, the same milk bank I had signed up with last time is the one our NICU uses. So if I had been unable to produce milk this time, I would have been able to feed E donated milk from the very same milk bank I had donated to. Karma, right?

That's a lotta milk.
That’s a lotta milk.

 

 

 

Baby Emmett, NICU

NICU day 26

Keeping up with the Hoffmans

Today was a good day. Emmett has reached 30 weeks gestational age (happy to be out of the 20s!) and put on another 30 grams, bringing him to 2 lbs 10 oz. Another huge milestone is that he graduated to the high-flow nasal cannula, so we said goodbye to the snorkel mask.

I’ll admit, as much as I missed seeing his face, I was very hesitant to get rid of the CPAP since he had been doing so well on it. We’ve had an amazing past few days with very few events, and I worried that this might take us back to the days of multiple desats and bradys. Happy to report that so far, things seem to be going just as well on the high-flow. I don’t think he’s desatted at all today and has only had one bradycardia, which was very brief and self-resolved.

In addition to changing up his breathing support, we’ve also increased his milk intake to 23 ML per feed, and have gradually reduced his feeding time from an hour to a half hour (still every three hours). They had previously stretched out his feedings to an hour since he kept desatting as his tummy filled, but since he hasn’t been doing that, they were able to get him back to 30-minute feeds, which is the standard.

In an effort to minimize any stimuli and allow him to conserve calories (and gain more weight), the nurses are now only doing his cares (diaper changes, repositioning, etc.) every four hours, instead of every three. Which means now if I want to hold him for the entire stretch in between cares I need to do it for four hours! I did it today, but by the end I was hungry, had to pee, and my boobs felt like they were going to burst with such a long stretch between pumping (and having a baby on my chest certainly didn’t help!). But dammit, I was determined to make it the full four hours. I was talking to another NICU mom the other day and she had also talked about “powering through” the long holds to give her baby maximum skin time with minimal disturbances. The sacrifices we make as moms, right?

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Baby Emmett, NICU

NICU day 25

Keeping up with the Hoffmans

Another uneventful day. In fact, this morning E’s doctor actually said to me that he was one of her easiest patients. I asked two different nurses, plus the doctor, whether they were concerned with his lack of weight gain over the last two days, and they all had the same answer for me: no, that it’s the trend we’re looking for, and that changing his breathing support could be to blame as he adjusts. After hearing it three times I think I’m finally satisfied. I’ve become a little obsessed with his weight. Thankfully he was up 20 grams tonight at his weigh-in. He’s now 1150 grams, or 2 lbs 8.57 oz.

I stayed at the hospital last night, and then came home late morning and spent most of my day at home, getting T’s big boy room cleared out and painted while T was enjoying some grandparent time. Home improvement projects have always been my zen so it was nice to get away from the hospital, put on some Pandora and focus on a project. D and I went to Costco around noon (hot date!) and then he headed back to the hospital. Because of the way schedules worked out today, he held Emmett instead of me. He had a great afternoon with no episodes.

During cares this evening, D was able to snap a quick photo of E without the CPAP on his face. I’m hoping we can graduate to the high-flow cannula in a few days. It’s hard to argue with how well he’s been doing on CPAP – I just miss his face! It changes so much every time I see him.

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Baby Emmett, NICU

NICU day 24

Keeping up with the Hoffmans

Emmett is a rock star. Another boring day today and he’s still doing fantastic on the CPAP. I held him for almost three hours and he was so content the entire time. He was sprawled out as if he didn’t have a care in the world. Unfortunately, his weight didn’t change at all today. Better than a loss, but not exactly what we were looking for. The nurse and doctor aren’t worried, though, and pretty much reinforced what I mentioned yesterday – that the upward trend over time is what matters and daily gains or losses don’t mean much because there’s a fair amount of fluctuation at this age. He’s also at a point developmentally where he’s doing a lot more on his own, and the fact that he’s been on 21% oxygen (room air) for about two days straight means he may be burning more calories by simply breathing.

D and I both took Theo to swimming lessons this morning, and it was nice to get out as a family (or as complete of a family as we can as long as E is in the hospital). I headed back to the hospital after lunch and my parents came for a brief visit before swinging by our house to pick up T for the remainder of the weekend. Tomorrow afternoon D is trading me at the hospital and I’m going to get as much of T’s big boy room completed as I can while he’s away at grandma and grandpa’s.

Really hard to believe we’ve been here 24 days…

Chillin'
Chillin’
Baby Emmett, NICU

NICU day 23

Keeping up with the Hoffmans

I have to say, today was pretty boring. Emmett is doing fantastic on the CPAP, even if it looks worse (I miss seeing his sweet face!). He’s been having very infrequent events, and I got to hold him for three hours today and he was perfect. Unfortunately, he lost 30 grams at tonight’s weigh-in, but D brought up a good point to me this evening that we probably shouldn’t put too much stock in daily gain and instead should be looking at trends over a week. A nurse had told me pretty much the same thing a week ago — she said they like to see a gain of around 30 grams per day, but that it’s really inconsistent — sometimes it’s more, sometimes it’s less and sometimes babies randomly lose for no apparent reason. If the past few days are any indication, I’d say that’s spot on.

I attended rounds again this morning and the doctor said she was happy with how he was doing on the CPAP and didn’t want to make any changes to his care for a while to let him relax and focus on growing. So it looks like we’re stuck with the snorkel for a while longer. She’d like to re-evaluate where we are once he hits 30 weeks, which is Monday, and possibly graduate him to the high flow cannula at that time if he’s still doing well. They will recheck his sodium levels on Sunday, as they were borderline low at last week’s check. As long as he’s continuing to grow (and today’s weight loss was just a fluke), she isn’t too worried about his sodium.

I’m home with T tonight. Tomorrow I’ll take him to swimming lessons, and then the grandparents are taking him for the rest of the weekend so we can work on putting together his big boy room, and start getting the nursery ready for E’s homecoming, even if it is a long way off still.

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Baby Emmett, NICU

NICU day 22

Keeping up with the Hoffmans

Today was pretty eventful. Normally, in the NICU world that would be a bad thing, but today it was mostly good.

This morning, we got the news that the doctor would like to take Emmett off the NIV NAVA machine. His team had been discussing this idea for a couple days now, and they decided today was the day. But instead of going to a high-flow cannula like they talked about, they decided to go to a CPAP. While both options prevent his lungs from collapsing with exhale by keeping them partially inflated at all times, with the CPAP you can actually control and measure the amount of pressure, so the doctor felt this was a good intermediate step on the way to a high-flow cannula. Unfortunately, that meant putting him back on the snorkel mask he had hated so much when he was two days old.

So far he seems to be tolerating it well, though the machine is noisy and his face is almost completely covered. It’s hard because even though we know it’s a step forward (the respiratory therapist called this “remarkable” for his gestational age), it feels like a step back, simply because it’s so much more obtrusive. With any luck, he’ll only spend a brief amount of time on the CPAP before graduating to high-flow cannula — which looks almost exactly like what he had before, but offers even more independence and less support. With both the CPAP and the high-flow cannula, there’s no backup mode if he stops breathing, which is a big, scary step. Now, if he has an apneic episode, the assumption is that he’ll recover on his own and start breathing again. If for some reason he doesn’t, then the nurses have to rush in and help him. And that’s terrifying. But the way the doctor described it, he needs to eventually do this on his own, and the only way to see if he can is to try. If he has too many apneic episodes and/or his oxygen saturation drops too often, there’s always the option to put him back on the NIV NAVA. Two steps forward, one step back, right?

I didn’t get to hold him today because he was pretty exhausted from the transition, so that was disappointing. But he’s only had a couple events since getting the CPAP and they were self-resolved, so we’re optimistic this was the right move to make at this time.

On the bright side, he got to spend a few minutes without anything on his face before he got the CPAP and I was able to get a video of him breathing completely on his own and looking around. The nurses always comment on how alert he is for a 29 weeker, and how big his eyes are. They always tell us how cute he is too. They probably say that to all the parents, but we think he is pretty cute — especially as he fills out more and starts looking more like a newborn. He gained another 60 grams today and is up to 2 lbs 9 oz now!

 

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Snorkel baby.