NICU day 26

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?

IMG_1369

NICU day 25

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.

IMG_1359

NICU day 24

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’

NICU day 23

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.

IMG_1317

NICU day 22

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!

 

IMG_1301

Snorkel baby.

NICU day two

Emmett is two days old now – about 55 hours to be exact. So much has happened in just one day, and I think the gravity of what we have ahead of us is starting to sink in. How can we do this for three months? It feels impossible. But I guess we have to. The alternative is even more difficult to fathom and I refuse to even type it. The good news is, Emmett continues to impress the NICU team, though we certainly got our first taste of the “two steps forward, one step back” pattern we were warned about today.

The biggest milestone today: they removed his breathing tube! That’s a huge step in his journey toward breathing on his own. The problem was, he still needed some assistance, and the team determined a CPAP (like what adults with sleep apnea use) was the way to go — and Emmett HATED it. It was too much air pressure for him, so every time he would get a puff of air from the CPAP through his nose, he would open his mouth in reflex and chuff out some of that precious oxygen. This caused the oxygen sensors to go berserk every couple minutes and made it sound like he was crashing. Even though the nurse and RT assured me he was fine – that he just needed to get used to it and that the alarms were just overly sensitive, the sound of all those alarms was just so unnerving, and in my sleep deprived state (3 hours last night and 4 the night before), it was simply too much for me to handle. Emmett was flailing around in protest, alarms were going off left and right, and I broke down sobbing. This went on for a couple hours. They even put a chin strap on him to keep him from letting all the air out his mouth, but then his face just looked smooshed and he was still fighting the machine. Finally, the team determined he was expending too much energy fighting and tried a nasal cannula instead of the CPAP. It was like an instant calm came over the room and things have been better ever since. I swear, I’m going to be hearing that damn alarm in my nightmares. D joked that E will probably need it to fall asleep once we take him home.

One thing I should mention, that was pretty amazing, was in between pulling the tube and putting on the CPAP, I got to see his full face again for the first time since birth. It was only a split second, but I snapped a quick photo.

IMG_1046

Another benefit of not having the breathing tube is that he can actually cry now! As of right now it sounds more like a kitten mewing than a baby crying, but to me it’s the most beautiful sound in the world. I hope six months from now when he’s hollering and screaming all night, that I remember and appreciate how truly beautiful that cry really is, and how far we’ve come.

His bilirubin was looking a little low today, so after bragging yesterday that he hadn’t needed phototherapy yet, he started on it today, and will be on it through the night. They’ll draw his levels again in the morning. Thankfully, he doesn’t seem to mind it, though our whole room is glowing blue.

IMG_1051

Around 1 p.m. the nurse wanted to insert a PICC line for nutrition and antibiotics. It’s a bit of a complex procedure so they require parents to step out of the room. D and I used the opportunity to take a walk and get some fresh air. We went down to an outside courtyard and sat in the sun, and I called my parents and gave them an update. The nurse called me on my cell when they were done and we went back to the room and found a calm and sleeping Emmett. Everything had gone perfectly with the PICC.

Around 5 p.m., the doctor stopped by to tell us she was concerned with how high his metabolic acid levels were. She said it could be something as simple as dehydration (he has been peeing a ton), or it could be an infection. She wanted to give him fluids and another dose of antibiotic (he’s been on antibiotics since birth due to the amniotic rupture), and then check his levels again at 8 p.m. If they didn’t drop, she wasn’t sure what could be causing it and mysteries are no good. D and I were a little troubled, but took a break to go home to the dogs, ate some dinner, cleaned up the house a bit and then met the doctor back in E’s room at 8. Thankfully, his metabolic acid levels are now fine. What a relief.

Another highlight of my day? I officially have working boobs. I may have shed tears of joy over pumping a whole 1.5 ML of colostrum this morning. It’s not much, but it was enough to get into a syringe and we can start feeding tomorrow (he’s been on just IV fluids so far, and the doctor wanted to figure out what was happening with his metabolic acid levels before we attempted feeding). I’ve been pumping every 2-3 hours around the clock since he was born and was beginning to get pretty frustrated with my lack of anything to show for it. But since this morning’s pump, I’ve been gradually increasing my production and am now up to 8 ML. The nurse says we’re already way ahead of what he needs, so I guess I’ll just get started on that stash! Since we’ll be pumping for quite a while before I can actually nurse him, it’ll be nice to have a good stash built up so I don’t have to worry about running out. Speaking of nursing — the nurse and I both noticed he has a tongue tie, which could interfere with nursing. They said it would be no problem to clip it once we get a little closer to that milestone. No use in putting him though more than necessary right now.

D went home to sleep shortly after talking to the doctor this evening, and I’m spending another night in the NICU. Tomorrow I’m going to take a little break and take T to swimming lessons, and D will come stay in the NICU. Then around naptime we’ll trade off and I’ll head back here and he’ll take T to a party. I’ll probably go home to sleep tomorrow night since we’ll have T with us again. Balancing our home life and our NICU life is going to be a bit tricky. We still haven’t decided when or how to tell T about baby brother, but will probably wait until E is presentable enough that we can introduce them. Right now all the wires are pretty intimidating and he’s too fragile for us to even hold. I can’t wait for the day I can get a picture of Theo holding Emmett.

Really looking forward to seeing my big boy tomorrow. I’ve missed him so much.

NICU day one.

Emmett is now about 34 hours old and we are learning all there is to know about milestones, life in the NICU and a bunch of other stuff I never thought I’d need to know. I’m going to do my best to keep this blog updated with Emmett’s progress and things we’re learning, even if some of the details may be a bit fuzzy to me. As you can imagine, my head is currently spinning.

Honeymoons and two-steps:

When we arrived yesterday, the doctors and NICU staff warned us right off the bat that the first 24 hours in the NICU tend to be the honeymoon period, and that going forward, it’s common for things to take a “two steps forward, one step back” pattern, even in the best of cases. So we’re learning to strike a balance between positive thinking and realism. That said, everyone has been marveling at how well Emmett has been doing so far!

Goals and milestones:

Long-term (i.e., in order to spring him from this joint), our big milestones we have to hit are: breathing on his own, regulating his temperature on his own, sleeping in a crib and not an incubator (I think this is related mostly to temperature regulation) and all feedings via mouth (breast or bottle, as opposed to IV or tube). There are many, many smaller milestones and sub-milestones, but those are the biggies.

Progress report:

I’m happy to report, E is already making great progress on the breathing front. When he was born, they had to immediately intubate him and hook him up to a respirator that breathes for him. According to the doctors, babies this premature get easily tired and basically forget to breathe. So he has to learn to do it on his own. Earlier today they were able to stop the continuous forced breathing and instead set him up so if he didn’t take a breath every two seconds, the machine would kick on for him and help him. Later this afternoon, they increased that interval to four seconds. They’re basically testing his ability to do it himself by offering less and less help (but always having safeguards in case he doesn’t take a breath on his own). He’s been doing great, and if he continues to do well throughout the night, they will actually remove the breathing tube tomorrow morning (which will allow us to see more of his beautiful face and actually hear him cry!), and put him on a CPAP or a forced-air cannula. These will still offer some assistance and not let him go without oxygen if he were to forget to breathe, but they both allow for a little more independence. They’ve cautioned us that if he doesn’t do as well on that as they’d hoped, there’s always a chance we could have to go back to the breathing tube (again – two steps forward, one step back), but at this point they’re feeling optimistic he can do it.

There’s also a chance tomorrow that they may be able to remove the catheters that are inserted in his belly button that are measuring his blood oxygen level (I think? My head is swimming) sugars and blood gases (just confirmed), and if that happens, we may even get to hold him and do skin-to-skin for the first time. We can hold him with most of his tubes and wires still hooked up, but the belly button ones are particularly fragile, so those have to come out first.

I’m happy to report his bilirubin levels have been pretty good and he isn’t showing signs of jaundice. So no phototherapy needed yet, but that doesn’t mean he won’t need it at some point. It’s still early.

Random learnings:

It’s past midnight now and after just four hours of sleep last night, I think the adrenaline may finally be surrendering to the fatigue, so I’m going to wrap this post with a random brain dump of just a few of the many things we’ve learned about life in the NICU. It’s a whole ‘nother world, for sure…

  1. You will wash your hands raw. Enter a room? Leave a room? Eat? Touch your face or hair? You wash your hands before you do anything and everything. I got an amazing care package from some dear friends yesterday and they thought to include hand lotion. Smart.
  2. It’s hard not to jump every time you hear an alarm. And there are a lot of alarms.
  3. You do start to learn the difference between the really bad alarms (heart or breathing-related, etc.) and the more innocuous ones (for example, the IV station monitor alerts when a bag is half full, then 1/4 full, and then empty. We get it, IV.).
  4. In addition to the alarms in your own room, the monitors in the hallway have alarms for all the patients for safety redundancy, and since doors are almost always open for easy staff access, it’s sometimes hard to tell whether the sound is coming from your room or the hallway. And then you feel relief, followed by guilt for feeling relieved, when you realize it’s not your baby’s alarm that’s sounding.
  5. The NICU staff are truly amazing. I’m already in love with our doctors, nurses and respiratory therapists and we’ve only been here a day. I can already tell leaving them will be a bittersweet and emotional experience. I can only imagine the types of heartbreaking situations these folks deal with on a regular basis. On top of that, they patiently explain everything to parents like me who hover over their shoulder and ask them millions of questions while they’re trying to do their job.
  6. Trying to get your milk to come in via pumping instead of nursing SUCKS. Especially when your boobs thought they had another 14 weeks before they had to perform.
  7. There’s a lot of downtime. We have been told we can touch Emmett when he’s awake, but to let him sleep as much as possible. So for a lot of the day, we’re just sitting here. I’ve kept myself busy keeping friends and family updated, but even if I’m not interacting with E directly, it’s still comforting to just be here beside him. If (God forbid) something went wrong, I would want to be here, and I also want to be here to celebrate every milestone and achievement.
  8. There’s a certain solidarity between NICU families. Whether it’s a weary smile from another parent in the hallway or an email or text from a friend who’s been there (or a friend of a friend, in some cases!), I’m finding a rapidly growing network of others who just get it. Some of the best “therapy” for me so far has been simply hearing success stories of children who got a rough start way too early but are thriving now. There’s actually a wall in the hallway here with photos of beautiful, smiling children of various ages. Under each one is a plaque that states their weight and gestational age at birth. It’s truly beautiful, and brings a smile to my face every time I walk by.

IMG_1044