NICU day 47

Today was a good day. D spent the night at the hospital last night and said Emmett had one of the best nights to date. This morning we took Theo to a 4th of July parade, and then I went back to the hospital so I could hold E this afternoon. When I got there, not only was E swaddled in his isolette, but he was wearing clothes! His temperature on his isolette was turned down to 26C, and the nurse gave me the great news that he would be moving to a crib tomorrow! They will also be turning his oxygen down to 1 liter, which is officially low-flow. Lots of great progress.

I didn’t get a lot of time with E today. Just the three hours I held him, and then I left the hospital to meet D and T at our friends’ house for more Fourth festivities. As hard as it was to have so little time with E today, I know he doesn’t consciously miss me while I’m gone, where T definitely does, so it was important to spend this holiday with him. It was good to see friends and we lit off a few fireworks after dark and kept T up WAY past his bedtime. So worth it to see the sheer elation on his face over the fireworks. D went back to the hospital for the night again and I came home with T to tuck him into bed. And then I started a load of laundry, including preemie clothes (!!) since we can start dressing him once he’s in the crib. The hospital will provide us with clothes if we want, but I figure we might as well use some of the preemie clothes we got as gifts since he probably won’t fit in them for long. He gained another 36 grams tonight, bringing him to 3 lbs 15 oz. There’s a very good chance we’ll crack 4 lbs tomorrow!

Baby clothes!

Baby clothes!

 

Cute kids

Cute kids

 

Sparkler fun.

Sparkler fun.

NICU day 46

One year ago, we got the news 13 weeks into our pregnancy that our baby no longer had a heartbeat. And while I’m grateful for how well E is doing, I can’t help but feel sad about the rough journey we’ve had to this point, and still have ahead of us. Four pregnancies: two miscarriages; one perfect, textbook pregnancy; one premature birth. My OB doesn’t think my preterm labor had anything to do with our losses, but she doesn’t know what caused it either, and we’ll probably never know. She did say if we were to get pregnant again I’d have to be on progesterone injections throughout the pregnancy — possibly in addition to the drug cocktail I was on this time around just to keep from miscarrying. Even then, there are no guarantees. Yeah, no thanks. My body hates babies. We’re done.

Interestingly, we have plans for the Fourth tomorrow with the same group of friends, at the same house we were at this time last year, after just learning we had lost our baby. I was still carrying my baby because I couldn’t get in for a D&C until the following week because of the holiday weekend. I was still wearing maternity pants, with a flowy top to hide a small baby bump. Many people at the party didn’t know we had even been pregnant, and I didn’t feel like talking about it. They had no idea the multiple glasses of wine I drank that night were the first I’d had in three months and that I so desperately wanted to escape the nightmare I was living yet again. Now here we are, one year later, living a different nightmare. It’s more bearable this time because our baby is alive. But it’s a lot more draining because it’s so drawn out and there are still so many unknowns.

But I should try to focus on the positives. Emmett is really doing very well, all things considered. The CLD is still haunting me because we don’t know how severely he’ll be impacted, but for the time being, he’s making forward progress. He’s continuing to gain weight. He’s still having occasional events but they aren’t too frequent or severe. He handled the drop to 2 liters of oxygen like a champ, and they’re talking about possibly dropping him to 1 tomorrow. He put on 28 grams today, bringing him to 3 lbs 14 oz.

His heart rate has been jumping up frequently these last couple days, but that seems to only happen when he’s agitated. The higher heart rate episodes seem to have coincided with when they started swaddling him – perhaps he just prefers having his arms free. And he has shown us that despite his lung issues, he can let out an impressive cry when he wants us to know he’s unhappy!

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NICU day 45

We had another good day. Relatively uneventful in itself, though we are on the cusp of some pretty big milestones and I had some good conversations with the nurse about our plan of attack.

As far as today goes, the biggest news of the day is that they turned his oxygen flow down to 2 liters. So far he’s handling the change very well and doesn’t seem to even notice the difference. His weight was up another 11 grams this evening, bringing him to 3 lbs 13 oz. In just two weeks he has put on a full pound, which is fantastic.

As for the big stuff on the horizon … we learned today that in about another week he could both be in a crib, and be breastfeeding. We knew these were possibly coming soon, but today we got some more specifics on how the transition for each works.

For the crib, the first criterion is size. It usually happens around 1800-2000 grams, but 1600 grams is the minimum weight. He’s currently 1728 grams. The second and more important factor is temperature. Currently his isolette is set at 27º Celsius (80.6º Fahrenheit) and it needs to be able to maintain his body temperature for 24 hours at 23-25º C (73.4-77º F). They’ve already started dropping the temperature on his isolette a little each day, so as long as he keeps handling the change without a drop in body temperature, they think he’s on track to be in a crib in about a week. This is particularly exciting because then we can put clothes on him and can pick him up whenever we want, instead of having to schedule one long hold each day.

For breastfeeding, sometime around week 33 or 34 (he’ll be 33 weeks on Monday), they’ll start scoring him on a scale of 1-4 every time they come in for cares. 1 means he’s awake and showing strong hunger cues like sucking on his hands or rooting. 2 means he wakes up when he’s handled and shows some hunger cues. 3 means he’s briefly alert with cares but shows no hunger cues, and 4 means he sleeps through cares with no hunger cues. If he goes 24 hours with all 1s and 2s then they start the “72 hour breastfeed” which is like breastfeeding bootcamp. During this time they want me around as much as possible so I can nurse him whenever he’s hungry. After those 72 hours they are fine mixing breast and bottle, but those first 72 hours are critical to breastfeeding success. Since it will take a while before he’s eating efficiently they will weigh him before and after each feed, subtract the amount he’s taken in via nursing and make up the difference with the tube. Once he’s getting 80% of his feeds via breast or bottle, they will remove his feeding tube. It can be a long process and we’ve been told this could very well be one of the things that keeps us here until close to his original due date as he learns to work for his food.

So that’s the plan. I love me a good plan.

Burrito baby

Burrito baby

NICU day 44

Emmett reached an exciting milestone today: he is now officially double his birthweight, at 3 lbs 12 oz. He had another pretty good day today. Still a few more events than I would like, but nothing like he was a few days ago. The team is happy enough that they want to turn him down to 2 liters of oxygen flow tomorrow. It makes me nervous, but they think he can handle it.

There was also some talk today about moving him to a crib soon, which is huge. They have turned down the temperature in his incubator and have been swaddling him in a blanket. This was mostly to keep him from pulling out his feeding tube, but it’s good to see he is getting better at regulating his temperature.

Today was my first day working from the hospital and it went well. It made the day go by faster and I was actually pretty productive, so I’m feeling good about my decision to go back and save my leave for when E comes home. I still have every reason to believe that will be sometime mid-August, but it’s crazy to see how much progress E is making and how the team is plowing ahead with next steps. It’s weird – I’m actually kind of scared of the progress. For one, I’m afraid of getting too comfortable again. I think what made the last week’s setback so hard was the fact that he had been doing so well the week before. But two, I’m honestly afraid to take him home. The NICU can keep even a very sick baby alive. Can I? I remember when T was a newborn I would just stare at him while he slept, terrified he would stop breathing. And he was healthy. With E’s prematurity and the CLD, I’m going to be a basket case. I may need more weaning from the monitors than E does. I kind of want to get one of those Owlet monitors, but D thinks I’ll drive myself even more crazy.

I’m home tonight and did some cleaning and organizing of the nursery this evening. I unpacked T’s old newborn clothes and hung them in E’s closet. Seeing those little clothes (which look huge, compared to Emmett’s size) brought back a ton of memories. As scared as I am to bring him home, it’s starting to feel more real and I’m also getting excited.

NICU day 43

Today I went back to work, which was surreal. I was simultaneously excited about and dreading going back today, but the day turned out to be really good. Everyone was happy to see me and I was greeted with a “welcome back” sign and donuts on my desk when I arrived. I stayed busy digging out of six weeks’ worth of emails and getting caught up on the status of my various projects, and the day went by pretty quickly. Tomorrow I’ll work from the hospital and then we head into a long weekend. I highly recommend starting mid-week for anyone returning from maternity leave. I did this with Theo too, and it just makes the transition so much more manageable. I will say, as unnatural as it felt to be in the office while my baby was in the hospital, it wasn’t as hard as leaving Theo at daycare for the first time when he was a baby. We’ll see how hard it is to go back after I take my “real” maternity leave when E comes home. But for now, going back to the office was a welcome break from all the beeps and alarms of the NICU.

D spent most of the day with Emmett today and said he had a good day. They turned his oxygen flow down to 3 liters this morning and he seems to be handling the change pretty well. Still having a few desats but not too many. His weight was up 11 grams today, which still rounds out to 3 lbs 10 oz.

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NICU day 40

Emmett had a pretty rough night last night. D was with him and said his alarms were going off all night. This morning we met with the doctor who told us Emmett has chronic lung disease, or bronchopulmonary dysplasia. He turned his oxygen flow back up to 4 liters and ordered a chest x-ray to be sure, which confirmed the diagnosis. It was upsetting to hear the word chronic. Contrary to what we’ve been told all along, this may not be something he simply grows out of. The doctor recommended putting him on a 10-day dose of prednisolone and we agreed. The other options were to put him on a diuretic to drain the fluid from his lungs, or to turn his oxygen flow back up even higher — but that would reverse a lot of the progress we’ve made thus far on weaning his respiratory support and could put off breastfeeding even longer. So we’re hoping the prednisolone helps, but it’s very possible this may be an ongoing issue for him and the doctor said in some cases babies with CLD even go home on oxygen. I’m feeling pretty defeated.

On a positive note, his red blood cell count was good today so he got to come off the Epo. We had a good kangaroo session today with very few events and he seems to be doing well this evening. He’s back to 21% oxygen and satting in the high 90s for the most part, with the occasional brief desat. He lost 10 grams tonight, which isn’t super surprising after several days of high gains. He also missed at least part of his 5:30 p.m. feeding because he pulled his feeding tube out yet again when I went home for dinner, and the nurse didn’t realize it until she went to check on him and the tube was out and there was milk all over him and his bed. Something tells me this kid is going to be a trouble maker.

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NICU day 39

Today was relatively uneventful – a welcome change from the past couple days. Emmett is still having a higher number of episodes, but I think it’s only obvious in comparison to the good week he had last week. I still stare down the monitors, silently willing the numbers to go back up every time he has a brady or desat, but as scary as those events are, he always pulls out on his own.

Most notable events of the day: they turned his oxygen flow down to 3 liters (though he’s been hanging out around 24% to compensate) and he’s put on another 20 grams. He’s 1600 grams even currently, which still rounds out to around 3 lbs 8 oz. He pulled out his feeding tube yet again overnight. This time he at least had the sense to pull it out completely (all 17 cm) so it didn’t cause him any reactions. The nurse simply went in to start his feed this morning and his gavage was just laying beside him. Stinker. They are having to get creative in their taping tactics to keep it in place. I can only imagine this will become more of an issue the bigger, stronger and handsier he gets.

Kangaroo care went well today. He started out nuzzling but after a while he seemed uncomfortable and grunty so I pulled him upright into the traditional kangaroo position, and he passed out. It was hard to put him back, he seemed so content. It’s nice that he’s finally feeling sturdy enough that I’m comfortable repositioning him on my own without having to call a nurse in to help. What a difference from just a few weeks ago when it took two nurses just to pull him out of his isolette and put him on me!

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The face of contentment.

NICU day 35

Emmett is now 5 weeks old and weighed in tonight at 3 lbs. 3 oz. The weight gain makes me really happy. For one, gaining has always been our biggest goal since his other issues should work themselves out as he grows. But also, seeing those numbers go up provides a tangible measure of progress that I can fully understand. Unlike all the other numbers that leave my head spinning, weight = good. And the closer he gets to weighing what a term baby would weigh, the better.

He’s still having some oxygen saturation issues, and they turned his cannula flow down to 4 liters today, which may be contributing, or at least didn’t help. All day we were chasing the numbers. They’d turn his oxygen down and he’d desat. So they’d turn it up and he’d high-sat. Lather, rinse, repeat. But he’s at 21% currently and satting nicely so hopefully we’ve turned a corner.

He’ll need to get down to 2 liters before we can truly attempt breastfeeding, though the nuzzling we’re doing during kangaroo time is still going really well and he did quite a bit more actual sucking today. Still not officially feeding, but he was definitely pacifying. The nurses are impressed with his progress, and it just felt really normal and natural to have him there like that. It’s funny the things you take for granted until you’re thrown into a situation like this where “normal” is rare and momentous.

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NICU day 34

Another pretty good day, but we were still having a higher number of desats overnight and through the morning. The afternoon seemed better, so hopefully we’re headed for another good streak. The doctor decided to increase his caffeine again to see if that helps. Since he’s been gaining weight beautifully lately it’s possible he just needs a higher dose now. Despite the desats, the doctor decided he’s ready to step down on the flow in his cannula, so we’re going from 5 liters to 4 starting tomorrow. They also bumped his feeds up to 27ML.

D had a late soccer game tonight so we decided, for the first time since E was born, that neither of us would stay at the hospital overnight. So I’m home with T now and when D gets done with soccer he’ll just come home too. It just didn’t make a ton of sense for him to go to the hospital when he wouldn’t get there until close to midnight. It makes me hyperventilate a little when I think too hard about neither of us being there, but most of the NICU parents don’t stay there every night, and it’ll probably be good for us to actually stay together every now and then, anyway.

I called the nurse to check on E tonight and found out he gained another 20 grams, so he’s up to 3 lbs 1 oz. Unfortunately, the nurse said he spit up most of his evening feed, which I hate thinking about after our experience with him spitting up the other night and desatting. Hopefully I can actually get some sleep tonight.

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NICU day 31 and 1 month old

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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