NICU – Page 11 – Keeping up with the Hoffmans

NICU day 3

May 21, 2016August 6, 2018 Keeping up with the Hoffmans

Today was a good day. I’m trying to toe the line between optimism and realism, but today was a really good day. We had a good night last night too. E was a little fussy through the night (and that tiny cry is just so sweet), but fussy isn’t terrible. He’s certainly a fighter. The biggest issue with being fussy is that we don’t want him burning more calories than necessary since he isn’t gaining weight yet. But he calms quickly when you place your hands on him and it’s nice to be able to comfort him.

I actually slept really hard last night, even though I woke up to the normal NICU noise and E still had the bili lights on him so our room was pretty bright. I also had to wake up to pump every three hours, so even though I didn’t get uninterrupted sleep, I could tell I slept really hard when I was sleeping. I really needed that.

Speaking of pumping, it’s going really well. I got 15 ML first thing this morning and it keeps increasing with each session. My latest pump was 30 ML. It’s also starting to transition from colostrum to milk, so all systems seem to be a go. Even under ideal circumstances, breastfeeding is hard in the beginning – your body takes a while to adjust to the sensation and it can be downright painful at first. But at least when you’re nursing and you’ve got that sweet baby on you, your body releases endorphins. With pumping, you don’t get endorphins; just suction. I always hated pumping with T but did it out of necessity. It’s been really hard pumping around the clock, especially knowing I won’t be able to actually nurse him for a long time, and that even once we can, preemies often have a hard time with it. It’s daunting to think that breastfeeding may not work out and we could end up exclusively pumping. But I’ll do what I need to do to get him the nutrition to help him grow.

Unfortunately, we didn’t get to start feeding today like we had hoped, because his metabolic acid levels are still a little high. I mentioned yesterday that his levels looked good last night, but it turns out I misunderstood — they were looking much better, but they’ve kind of plateaued since. They aren’t super high, but high enough that they aren’t ready to introduce anything to his digestive system. It’s a bit of a catch 22 – breastmilk will help him grow and get stronger, but his stomach and intestines may not be strong enough to handle it yet, so we have to make sure all conditions are just right before we attempt. Meanwhile, they’re adjusting the composition of his IV in hopes that helps his metabolic acid levels and sets him up for feeding success.

His white blood count is also a little high. Initially they were supposed to stop antibiotics yesterday but with the metabolic acid levels looking higher yesterday the doctor gave him another dose so that’s a good thing we did. That said, too high is better than too low, so they aren’t super worried just yet.

I just realized I started this post saying he had a really good day and then listed a bunch of problems. But truly, these issues we’re currently dealing with are pretty minor, at least so far. Our focus right now is really just fine-tuning. With the exception of one scary apnea issue mid-morning (scary for me – he stopped breathing for a little longer than I was comfortable with, but the nurse wasn’t concerned), his breathing has gone really well today, and they were able to turn down his oxygen some. He was also able to come off the bili lights (though they warned us in about 50% of the cases he’ll need them again at some point). But he just seemed more comfortable today overall. He slept a lot, but had periods of awake where he would look at me and grab my finger with his tiny hands, and he had a few minor fussy episodes. He just seemed a lot more like a typical baby today, which was awesome. They’ll check his levels again around 4 a.m. and then we’ll discuss our game plan for the day.

As for me, I had a pretty good day too. The pumping progress certainly lifted my spirits and I think having a better night’s sleep also helped. I also stepped away from the NICU for a few hours today to take T to swimming lessons, which was probably healthy. D took him to a birthday party this afternoon and I went back to the hospital, and a friend stopped by to bring me some snacks and some other friends dropped off some cute home decor items to make our room feel more homey. I’m actually home now (D is at the hospital), and I got to put T to bed tonight. That was really nice to snuggle him and read him stories and feel just a little bit normal again. And even though I’ll have to set my alarm to wake and pump tonight, I’m hoping I sleep better in my own bed than I have been on the hospital couch in his room.

Baby Emmett, breastfeeding, NICU

NICU day two

May 20, 2016August 6, 2018 Keeping up with the Hoffmans

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.

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.

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.

Baby Emmett, breastfeeding, NICU

NICU day one.

May 20, 2016August 6, 2018 Keeping up with the Hoffmans

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…

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.
It’s hard not to jump every time you hear an alarm. And there are a lot of alarms.
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.).
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.
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.
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.
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.
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.

Baby Emmett, breastfeeding, health & body, NICU, pregnancy

Welcome to the world, Emmett!

May 19, 2016August 6, 2018 Keeping up with the Hoffmans

This is certainly not a post I ever thought I’d be writing at just 26 weeks 2 days.

I really should go to sleep right now. It’s been a long, emotional day. But I’m completely wired and I don’t really feel like leaving the NICU, so I thought I’d grab my laptop, sit by my baby, and try to make sense of the day’s events in one of the most therapeutic ways I know — writing. And, much like my birth story with Theo, I know is is probably way more information than most people would ever want to read, but recalling all the details helps me process.

The short version:

Emmett John Hoffman made a dramatic entrance into this world today at 2:20 p.m. At just 26 weeks 2 days gestation, he weighed in at 1 lb. 14 oz and is 13 inches in length. We have a long road ahead of us, as doctors estimate he’ll stay in the NICU until close to his original due date of August 22. But this guy is already a fighter. He came out crying and already peed on the nurses.

The novel:

For the last couple days, things have felt, shall we say — a little more damp than normal. A lot of this I just chalked up to one of the less glamorous things about pregnancy that no one talks about. I remember The Grossness with my pregnancy with T, but I couldn’t quite shake the concern that it seemed to come on fairly suddenly this time. By last night it had increased to the point where I was genuinely starting to worry. Still, I know I can be a bit of a hypochondriac, and the fact that we’ve had two losses certainly doesn’t help that. After googling whether you can check for amniotic fluid at home, I hopped onto Amazon around midnight last night and one-day-Primed some Ph test strips. I figured $10 was a small price to pay to put my mind at ease. I’d test today and if anything looked questionable or I wasn’t reassured, I’d head to labor and delivery to get checked out. Just to be safe.

This morning I woke up around 5 a.m. to not only more of The Grossness, but it was tinged with blood and I was having mild contractions about 3-5 minutes apart. Even though I’ve been getting Braxton Hicks contractions for a few weeks now, I’d never had them this regularly. This was all making me feel really uneasy so I called the on-call OB. Without hesitation she told me, “Go to labor and delivery.” Unfortunately, D was out of town for work, so I had to get T off to daycare myself first. Getting him ready has been a bit of a struggle lately and timeliness has not been our strong suit. I may have bribed him with candy just to hurry and get in the damn car. Dropping him off was an incredibly emotional experience. This was possibly his last day as an only child but I had to rush him into his class while trying not to appear too worried (after all, there was a part of me still holding out hope it was nothing). I fought back tears as I kissed both cheeks, the top of his head and inhaled the smell of his hair. And then I practically ran out the door and sped to the hospital.

When I went to check into triage, I burst into tears and could hardly even tell them my name. I was alone and scared. D had no clue what was happening because he was on a plane and I couldn’t reach him. And I didn’t want to worry anyone else until I knew what was going on. They took me back and monitored my contractions and the baby’s heartrate for what felt like hours, and then finally the on-call OB checked me and determined I was 1 cm dilated. A tad concerning, but since I’d already had a baby, some dilation can actually be normal. She also took some swabs to send to the lab to see if there was amniotic fluid. She said it didn’t necessarily look like amniotic fluid to her, but that there was definitely more fluid than she was comfortable with. She said it actually looked more like what your cervix produces when you’re in labor (I had no idea this was a thing). Either way, not ideal, but no amniotic fluid was certainly the preferred outcome, so this sounded promising. If it were “just” preterm labor they said there was still a lot they could do for me. They would give me some magnesium to slow labor and could maybe even send me home tomorrow!

After the OB exam, I was sent to Maternal Fetal Medicine for an ultrasound to assess the baby’s size and viability. The MFM told me baby looked beautiful for a 26-weeker, but was very honest about what a rocky road we’d have ahead if we were to deliver now. Survival rate is about 90%, but beyond sheer survivability, we face potential heart, lung, eye and brain complications. He said the magnesium would help protect the brain and that they’d give me a steroid shot that would strengthen the lungs — just in case. The good news was that there was still a fair amount of fluid around the baby, so even if I were leaking amniotic fluid (we were still waiting on test results), it was likely a slow leak. And he said in rare cases, a pinhole leak could even repair itself. Either way, he didn’t think I was in immediate danger of “draining the pool,” so to speak, but if I were to completely rupture, I’d deliver within 48 hours.

About this time, we got the labwork back on the amniotic test. It was showing very small amounts of amniotic fluid. Not great news, but they were optimistic we could still keep this baby baking for longer with magnesium to slow contractions and antibiotics to stave off any infections threatened by the leak. I was able to catch D on a layover and update him on what was going on. While he was worried, everything I had been told sounded promising at that point. I told him not to worry – just get here when you can. I got officially admitted to the maternity ward for 24-hour observation.

Unfortunately, after a couple hours on the magnesium, contractions were getting progressively stronger, not weaker, even after they upped my dosage. And when I stood up to use the restroom, it was clear we were dealing with more than the slow leak we had suspected. When the doctor observed me writhing in pain and yelling through a contraction, she thought we should probably check my dilation. I’ll never forget the way her face fell and she said in a quiet voice. “You’re complete. We’re taking you to delivery.”

At that point I kind of traveled out of my body. I heard myself let out a scream that sounded like no sound I’d ever made before. Suddenly there were about 12 doctors and nurses in the room. We weren’t sure whether I’d need an emergency c-section, and they knew they needed the NICU team on standby, so they wheeled me down to the OR, even though the regular rooms are typically set up for delivery. I had about three contractions on the way and was yelling like they do in the movies (nothing like Theo’s calm but long birth!). I had completely lost control and I think it was part pain and part complete and utter fear. I had an overwhelming urge to push, but they kept telling me not to because the NICU team wasn’t ready yet. I knew the only way I could not push was to get an epidural. I asked if it was too late, and they all looked at each other like they didn’t know. They paged the anesthesiologist anyway and he met me in the OR. He agreed to the epidural. Unfortunately, he was working so quickly that he didn’t get me completely numb before putting the giant needle and tubing in my spine and digging around to get it into position. I think I yelled as loud as I had during contractions. To make matters worse, he messed up and had to start over. So I’m the lucky girl who got two epidurals today.

About this time, D burst into the OR in scrubs. I’ve never seen him look so scared in my life. He held my hand while I yelled through two more contractions, fighting the urge to push (why was the epidural not working yet?!) and then suddenly the NICU team was ready and it was go time. About 20 seconds and two pushes and he was out. It would have been one push but they actually made me slow down. He cried once he was out, which the doctors said was amazing for a 26-weeker. They held him up so I could see him and then they whisked him away to the NICU. He was bright pink, not blue – which the doctors also said was a good sign. His APGAR scores were 1, 4 and 8, which I’m told is also pretty amazing for a preemie this small. We later learned in the NICU they had to intubate him and then perform CPR to get his heartbeat back – not uncommon, but scary nonetheless.

While I was waiting for my placenta to deliver, I felt my lower half begin to tingle and go numb. Huh. Nice of the epidural to start working now. I delivered the placenta and got a quick exam, and then they rolled me back up to my room. It took forever before we were allowed to go see Emmett, partially because we had to wait for my epidural to wear off (again, so glad I got that ). He is hooked up to a lot of tubes and wires, which is a bit intimidating, but everyone assures us he looks great for such a tiny preemie. We aren’t allowed to hold him yet, but they said we might be able to as soon as tomorrow or Friday. In the meantime, we’re allowed to hold his hand or foot, or sort of cup his head and feet while he’s awake. When he’s sleeping, they’ve advised us to let him rest. Meanwhile, I’m pumping every 3 hours around the clock to give him what I can to help him grow. I’m not producing anything just yet, but the frequent pumping should tell my boobs to get with the program!

I will get discharged from the hospital tomorrow, but I think we’re just going to camp out in E’s room and not go home just yet. Grandparents are watching T for a couple days, and I think the NICU is going to become our second home/office for a while. The doctors have told us he’ll likely stay in the NICU until close to his actual due date in August. I don’t think I’ve grasped the magnitude of spending three months in the NICU at this point, and I have a feeling we aren’t getting off the emotional roller coaster any time soon. For now, I’m trying to look at the NICU as an extension of my pregnancy – only now they’re carrying the baby, not me. We hadn’t planned on meeting him until August anyway, so this is sort of a sneak peek, and we’ll get him in August as planned. We’ll see how long this optimism holds up, anyway!

Holding Daddy's hand — Holding Daddy’s hand