It was the night before our little guy might get to come home, and it was my turn to sleep at the NICU. The night needed to go well, nothing to reset his count to go home, or we would be there another five days. Our son had already checked a number of boxes at this point, three weeks in, and the last one we needed was to go five days without an ‘event.’
An ‘event’ is any of a number of things, but the common theme is that his heart rate or breathing deviate from an allowable range for a certain amount of time. His heart rate was constantly monitored and needed to be between 80 and 200, babies have hummingbird like hearts apparently, and if his heart rate dropped below 80 for a few seconds that was ok. If it dropped for an extended period, that would count as an event. If his heart rate dropped and his color turned blueish, indicating a lack of oxygen, then that would much more quickly count as an event.
Our son, and all preterm babies, do not have the ability to regulate their own heart rate and breathing like a full term baby does. Our nurses had informed us, over and over, that we should expect that if he makes progress with eating, he would likely take a step back with breathing. This proved to be true, because our son was on and off oxygen during his stay there.
When my wife woke up, a few long hours after her c-section, we headed straight to our son’s room. Room 19. We got to his room and our primary nurse … well, our son’s primary nurse (who we got to see a number of times over the next few weeks) was telling us about how he was doing and going over some suggestions. She stressed that this our child and we can do what we want, BUT … they recommend this.
We learned the great news about my wife getting to hold him, and while she was sharing details on how he was doing and my wife seeing him for the first time, and seeing him there with all these tiny cords coming off him … The tears started flowing.
I’ll tell you, I don’t normally cry terribly often, so I think I’ve met my quota for the next couple years. Sleep deprivation, other people I love undergoing so much stress, and fatherhood – apparently those can make you cry a lot.
My crying felt very funny, because the tears just streamed down without me making a sound, so my wife looked over at me and smiled. I think she was a little surprised, amused, and touched.
It was her turn for the tears when she got to hold the little critter. Those two with their competing cords were quite the sight. My wife, still on an IV, still getting regular doses of drugs, recovering from surgery and all that, and the kiddo, with a number of monitors. A jumble of cords and love and tears.
I had gone home, showered, packed some clothes for the next day (our hopeful departure day), and then headed back to the hospital for what I hoped would be my last night there. My wife and I had not been the marathon parents that some others were – sleeping there every single night. Heck no. I don’t know how some people do that. My wife and I knew that the more time we were there the better, but we also knew that staying at the hospital 24/7 was an absolute drain. The whole experience has given me a few first parental lessons, one of which is that it’s all about choosing the least wrong answer.
Can I stay at the hospital? Yes. Is it better for him? Yes. Is it worse for me to a point that the lack of sleep will sap any energy I have after work, so that the time I spend with him is less good for him? Yes. Lack of sleep vs time with him – what’s the least wrong answer? And, every new parent lacks sleep … is sleeping at the NICU really that much worse than it would be at home?
When I got back to the hospital the night shift nurse had arrived, all of them worked 7 – 7 shifts. It was one I was not overly fond of, which was rare. The thing that drove me nuts with this nurse was that she was fond of dropping a goodbye guilt bomb. A few of the nurses did this, though I’m confident it was unintentional.
‘Yeah I need to eat some dinner.’ (This conversation happening at 9:30 pm, which is a late late dinner in my book.)
‘Coming back later?’
‘No, I need to get some sleep.’ (As I’m laying him back in his crib.)
‘Oh ok, that’s good for you to do … I bet he’ll start crying as soon as you leave, they just know whenever their parents leave.’
Even typing that I have to take a calming breath. Why? Why, nurses, why?
One other small dose of bad news – I forgot to pack shorts to sleep in! Gah. Sleeping in jeans it is.
His cords, oh his cords.
There was one cord that wrapped around his tiny little foot which measured his oxygen.
There was one cord that stuck to his chest with a little sticky thing which measured his heart rate.
There was one cord that stuck to his chest which measured his respiratory rate.
There was another cord that stuck to his chest, and come to think of it, I have no idea what it was for.
There was the tube that went through his nose and into his belly. There were tiny numbers on it, and you could see 20 right around his nostrils. That meant it went 20 cm down into his belly. Blech.
An IV that went through his belly button, to give him some special stuff. This was nuts. Every evening they’d analyze how every baby was doing, and then a big hospital in Denver would make each child’s own particular IV bag recipe and ship it up. Technology!
And last, but not least, was the cannula for his oxygen.
Having been there for a while I felt good and confident when it came time for his ‘cares.’
Every three hours our son had his ‘cares.’ Every child there has these. And if you were so inclined, you could learn how to do these things and do them yourself.
The cares involved the following:
- Move the pulsox, for reading his oxygen level, from one foot to the other
- Take his temperature under his armpit (he always hated this, which the nurses said is true for just about all babies)
- Change his diaper
- Later this involved applying a cream for a diaper rash
- Prep his food
- Twice a day he gets a vitamin which smells awful and has iron in it, which is important for him … we mix that in with 15 or so ml of food
- With every meal he gets his milk ‘fortified’ which is a powder we add that adds calories
- A typical serving of 70 ml of breast milk is 20 calories, with the fortifying we are doing he is getting 24 calories
- An unfortunate side effect of that stuff is it makes his poop more liquid, which increases the odds of diaper rash (see above)
Because we were so close to our departure date, I did all of this, including the food prep. Up until the last few days, the nurse on duty had always done his food prep, but the ability to prep his food and give him vitamins twice a day were checkboxes we needed to have met in order to take him home.
For his 9ish pm feeding I got to work. He was no longer on an ‘every 3 hour’ cares schedule but instead doing ‘on demand feeding’ (another checkbox where he needed to show he ate a sufficient amount by his own demand).
The nurse moved him from the crib into my arms, and I thought happily how much more easily I navigated moving his tiny body around now compared to just a few weeks ago. His size was no longer terrifying but adorable, and I could lift him up with some ease higher on my chest when he inevitably sank down due to his squirmy style. The only reason I asked a nurse to move him into my arms instead of me doing myself is because the cords were a bear to navigate.
I fixed a burp cloth around his face, turned him on his side to feed him side-lying style (this slows the flow of food and makes eating easier), and pop goes the bottle into his mouth.
During his approximately three week tenure at the NICU he had made a ton of progress with food. The first week plus he ate via gavage, the lovely tube shoved down his nose.
The first few days his meal size increased at every feeding. They wanted him to gain weight, and when he reached a certain weight the IV would be removed. The additional support from the IV would no longer be needed. I remember that milestone, walking over to the room around 9 pm and watching the nurse deftly remove that. Every subtraction of a medical piece of equipment from the room felt like a graduation.
But with the increased food came spitting up. No big deal, right? All babies spit up. Except … he was eating through a tube in his nose, which meant no air bubbles, so spitting up in his case was not because of the traditional reason. To counter this, the nurses suggested we try to hold him during and after eating, plop him on your chest and let gravity help the food go down and stay down.
At first he was fed over the course of thirty minutes, and then you would hold him for thirty minutes. The nurses, neonatal nurse practitioner and doctor decided to increase the time for feeding from thirty minutes to forty-five, and then a full hour.
With the hour-long feeding, between his cares, feeding, holding him, and putting him back, you’d take an hour and a half plus of every three hours helping him.
On his 9th day there he took his first bottle. This was a big milestone because the ability to eat on his own was obviously pretty vital for getting him home. The bottle feedings increased as time went on. At first, one or two a day was a lot, the effort it took might tire him out to the point that he would sleep through his next feeding.
He rarely cried at first, he just slept. And slept. And if he wanted to sleep through a diaper change and eat through his tube, you have at it kiddo. I remember saying, and I am already starting to eat these words, that I looked forward to the day when I would hear a loud, healthy cry from him. In the NICU, if you heard a loud cry, my theory was that kid was heading home soon.
It probably seems counter intuitive, but sometimes the best thing we could do for him was let him be. If picking him up and holding him would disturb his rest at all, and he was conked out, then it was ideal to leave him sleeping. I drove over before work one morning, around 6 am, only to learn that for that particular care time he was sleeping soundly. Having woken up for work an hour earlier just to hold him, and then be told that, it was not my favorite start to a day.
With the 9ish pm feeding done, I did my well-earned skin-to-skin and then plopped the kiddo down to sleep for the night (well, the next two hours). His gavage tube was gone, that was taken out when ad lib feeding was decided, he was all bottle or breast at this point.
I headed to the bathroom to brush my teeth, set up the little bed in his room, and turned on the TV. One of the Batman movies was on! Look out world!
After a bit of TV I decided to go lights out.
He woke me up about an hour and a half later, Mr. Grumbles doing his thing. I went to look for the nurse but she must have been in another kiddo’s room, so I ended up running into Josh, the joke-cracking nurse from my son’s birth night. I did an impression of the grumbles like doing an impression of a car making certain sounds for a mechanic, and I asked Josh if he could take a look and let me know if he thought it was hunger or just noises … Josh popped his head in, looked for a few seconds and said, ‘based on his eyes, I’d say he has 30 minutes til he wants to eat.’
Josh was spot on. Josh has mythical status for me, people.
Thirty minutes of semi-sleep later, it was cares time, and bing bang bong we were onto the food. The nurse asked if I wanted the lights on, and I said it was ok to keep the room dark. In my mind, this would help keep him sleepy. Silly me, the boy has no concept of when he should be sleepy.
I had learned a few tricks from the staff to help the kiddo finish his bottle. And finishing his bottle was an objective, because in these last 12 hours of our stay (fingers crossed) he needed to eat a sufficient amount or our departure would be delayed. To extend his desire to eat I would burp him, unwrap him from his swaddle, have him hang out on the pillow on my lap, and while this wasn’t something someone told me to do, I would also ramble to him incessantly (surprise, surprise, given the length of this blog post).
I had also learned some of my son’s habits. He often would wolf down the majority of the food, and then doze on and off while nipping at the last little bit. After the 9 pm feeding he had spit up a little on me, so this time I let him dictate the pace more, which meant more of his napping/eating.
This turned out to be a mistake.
A beeping noise filled the room, which was not unusual. The beeping indicated that one of the vitals being monitored was outside of an acceptable range, and I think there was a subtle difference in tones to indicate what was wrong, but I was always too alarmed to notice at the time. This wasn’t terribly unusual, though. A number of times his heart rate had dropped below 80 while eating, which was completely normal. Generally it would go off for a few seconds, and then his heart rate would resume. It was something I always hated and made me feel like I was doing something wrong, but I had come to accept it.
The beeping continued, I began to worry about the idea of this being considered an event, but I still assumed he’d bounce back right away. I started on the next bag of tricks – get him upset to get his heart rate and breathing going. I started trying to sit him up when the beeping took on a more worrisome tone.
I hit the call button to have a nurse come help, the new tone had taken me from ok to very worried. What had I done? Why was something so off? We’re so close to leaving!
My nurse for the night must have been busy because another nurse came in. She told me to take the bottle out of his mouth, and the beeping stopped almost immediately. Then, my nurse came in. She and the other nurse had a quick conversation about this. My nurse was a big fan of my sons, and I surmised that she didn’t think much of this … the other nurse said, ‘but I had to intervene.’ She clearly thought this was a bad event, and I had made a big mistake by not taking the bottle out myself. With the dark room I wasn’t able to watch the color of his lips to see if they turned blue, and that likely would’ve been my cue to remove the bottle.
The amount of time it has taken to read this does not do a good job of conveying how quickly all of this happened. I would think, from the first beep to the intervention, it was 10-15 seconds.
I can’t describe very well how upset or angry I was with myself, or how devastated I felt. It really felt like I had harmed my son in some powerful way, and along with that I had likely delayed departure which would pain my wife. The nurses reminded me that during a feeding, the heart rate can drop, that’s totally normal, the important thing is to watch and respond … But I hadn’t responded, I had just frozen. I liked to think of myself as being good at reacting quickly in situations, but instead I just froze.
My wife had insisted that I call if anything went wrong that night, I paced for a while, asked the nurse if that counted as an event and she told me they would make that decision in the morning. I called my wife, she told me not to blame myself, and then I went to sleep angry and crying.
Our NICU stay was great, in the grand scheme of things. Our son would occasionally take a step back, like being put back on oxygen occasionally, but in general it seemed like almost every day he was taking a step forward.
They had told us before he was born, and then the first few weeks, to expect to go home on his due date. And if we went home earlier, all the better. About a week before he was scheduled to go home, my wife heard a surprising announcement at rounds.
Rounds happened every day, usually from around 11 am to 1 pm, and they involved the doctor, the neonatal nurse practitioner, your child’s nurse, and usually two or three other people who were … I don’t know what.
The doctor mentioned the idea of discharge. This was the first time someone had said that. My wife called me excitedly at work and passed on the great news.
The nurse came in for the 2 or 3 am feeding and asked, suggested that I skip this one and keep sleeping. I took her up on the idea.
I was too scared to think of feeding him again at that moment anyway. I stayed laying down, blankets over me, listening to someone else take care of my son because I felt incapable. It wasn’t my best night of sleep.
The NICU stay also had lots of outside work distractions – my wife’s folks visiting, my mom and sister visiting, and we made pals with another couple with a kiddo there. In fact, we’ve hung out in a post NICU world a couple times. It’s fun being around people without beeping and such a sterile environment. Like, I don’t know, regular people!
It was while my mom and sister were visiting that we learned the shocking news about his earlier than anticipated departure date. This involved a number of extra steps to prove that we were ready.
We had already taken the infant CPR class, but we also needed him to pass the ‘room air challenge’ which is where he is off oxygen for 40 minutes in the room. During that time, his oxygen can’t dip below a certain rate. The idea with this test is that, at home, he could remove the cannula and we might not notice for up to 40 minutes before we would be able to fix it.
In addition, he passed the ‘car seat challenge,’ which is where he sits in his car seat for 90 minutes while being monitored. The purpose of that test was to show that he could handle a drive home.
I fed the little guy for the 5 or 6 am feeding, and while I was nervous, it worked out ok. Light had started to appear outside, and we had lots of lights on inside the room this time. He ate, I didn’t push him to keep eating once he started looking like he was dozing, and back he went to sleep. In fact, he likely went to sleep mildly hungry because I was so quick to pull the bottle away.
I slept a bit more before my wife arrived.
Our nurse that day was our primary, the same nurse we had the very first day. She asked me, ‘are you feeling gun shy about going home?’ Yes. Yes yes yes. I told her what happened, and then she told us we could still go home that day, if we wanted.
Because the event had occurred during a feeding, it wasn’t going to officially count as an event. To me, that felt wrong. What if we were home and I didn’t notice? I didn’t think to take out his bottle, what if I made that mistake again, or any of a number of other mistakes? I know all parents make mistakes, but the mistake I had made felt like a life-threatening one.
We agreed that it would be a good idea to spend the day there instead of checking out that morning. Then, that afternoon, we would reassess.
During rounds we talked to the doctor about what happened and she echoed that we could go home. She paid us a nice compliment, saying that we were clearly good parents, were there frequently, spent a lot of time with our son, and frankly, she wouldn’t let everyone go home after that. But, she said, they have reason to keep him if we wanted another night for our own mental health.
That afternoon, I went home, slept, showered, and decided that I needed to stay with him at the NICU again. I needed to have a night go smoothly, to not mess up, to have nothing go wrong, and I’d feel ok bringing him home and being able to feed him at any hour of the day.
At our primary nurses’s suggestion my wife and I went out to dinner together, our last ‘just us’ meal for a while, and it was a great idea. Refreshed, somewhat, I headed back to the hospital. And this time, phew, I remembered to pack sleep shorts.
I will echo a sentiment from an earlier post – which is that the whole experience at the hospital was great. We interacted with a lot of people, under intense stress, and I liked nearly everyone, and disliked only one or two people. For me, those are incredible statistics.
But, one thing that drove me nuts was occasional inconsistent messaging from nurses. These guys knew a ton, and among that knowledge base they had opinions … and yet, everything was presented as a concrete fact.
The second day our son was there, he was grilling under lights for jaundice, and based on something I had been told by one nurse I thought the best thing for him was to stay away. Low volume, low stimulation were best for him – that was a fact. Preemie babies can’t handle the traditional get passed around touched and patted and all that kind of experience. He was never in an enclosed cage which prevented touching, but you weren’t supposed to stroke him, instead lay a firm but gentle hand on him and keep it there. Informational material the hospital had also stressed the idea of low volume. You wanted to keep that kid sleeping, because that’s what he would be doing in the womb. Sleep, eat, let the brain grow.
On day three, I went by his room and a specialist came and talked to me. Something she said made me think I was staying away too much, and she responded with a compliment, telling me she thought I had a very calming voice (why, thank you) and that our son was used to my wife and I talking so we should feel free to hang out in there as much as we want. The more, the better. And as far as touching him goes, even if it’s a little upsetting, skin-to-skin helps him learn to regulate his heart rate and breathing by listening to his mom or pop.
Some nurses were more conservative and wanted our kiddo to be more hands off, others were more aggressive and thought every meal he should be held. It was confusing, but understandable … There is science in the NICU, but there’s also artistry in trying to determine what each unique child needs.
For his first feeding after my wife and I had dinner, around 9 pm, I settled in and began to feed him. I had given myself a small pep talk, reminding myself that for days and days I had fed him many times and nothing had gone wrong. No beeping, no worries, just a happy little hungry monster. The thing last night was an anomaly, and I learned my lesson to never go on auto-pilot when it came to him.
Suddenly, a beeping noise. My first thought was overwhelming sadness and ‘not again.’ This time I wasn’t feeding him, he was on my shoulder and I had just started burping him. I moved him around and began burping him more aggressively – make him upset and his heart rate and oxygen will be fine.
The beeping continued.
I started rubbing his feet hard, one of the nurses had said this could be a good way to get him to cry. Instead the beeping got louder.
I hit the nurse call button.
I was shaking, and terrified, and switching between aggressive foot rubbing and burping. If anything he looked red, what could be wrong? I was angry at myself, how could I be messing up every time I feed him? Why can’t I get any of this right any more?
The nurse for the night must have been busy, because another nurse ran in (the one who removed his IV). Shortly after her arrival my nurse arrived and the two conferred, looked at all of the information, and agreed that the machine had read things wrong.
Apparently the pulsox was reading things wrong, and then my aggressive foot rubbing only served to make the machine think things were awful.
The nurses left and I continued to shake a little, taking a few deep breaths and holding back … you guessed it, tears.
I typed out and deleted a couple of texts to my wife that were just profanity, before letting her know what happened.
That experience, and the experience from the night before, were two of the most terrifying moments of my life. And one of them was a fluke! I’m not going to take the time to make a list of the worst moments in my life, but I can tell you with confidence that this was number one on the list, with the night prior being number two. What fun, eh?
The whole experience was extremely educational. Not only for childcare basics, but for some good reminders about life.
Parenthood may be about making the least wrong decision.
Parenthood may be a constant reminder that the best laid plans can go awry.
Parenthood will require an unwavering level of paying attention, which I know I’ll slip up on because it’s human nature, but hopefully I’ll be on more than off.
Parenthood is a scary mother f-er.
Tomorrow I go back to work, paternity leave has flown by. The little guy is off oxygen (he came home on ‘a whiff’ and boy was lugging that tank around annoying). He is a social butterfly in the middle of the night, but that’s ok, he still manages to be adorable far more than he is a terror.