intubation – 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.

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

Tag: intubation

NICU day one.

Welcome to the world, Emmett!