Here we go, folks.
I haven’t exactly been looking forward to this post. But my hope is that it serves as a bit of a memory bank for us, a peek inside for outsiders, + a resource for fellow mamas on the brink of becoming “NICU mamas” to know that they’re not alone (when you feel so, so alone). It’s also hopefully going to serve as an all-in-one, one-for-all update on what all went down, from here, to here, and the 73 days since.
You already know the start of Olivia’s story – her grand entrance into the world, 2+ months early. (Side note: The doctors had asked us multiple times if her due date was calculated incorrectly, and turns out, we’re 95% positive it was…meaning she was likely closer to only 30 weeks when born instead of nearly 33.) I wanted to give a more comprehensive look, though, at all 73 days in the NICU – since 73 days is a freaking long time. I’m sure it’s imperfect, since my memory is currently clouded by a.) lack of sleep and b.) the bliss of being on the other side. But I had tried recording many of my thoughts + NICU happenings as they occurred so as to not forget. Since much of the below is from that, the emotion/rawness was all in real time. Since many of you know quite a bit of what went down since from following along on Instagram/Instastories (@ericaligenza over there, if you haven’t already joined that fam!), I’ll try to stick to key points.
Also lastly, before diving in, I think it’s important to note that I’m trying to stick to a.) what factually + scientifically went down, and b.) my/our emotions throughout. Every NICU family has a different experience. I absolutely HATE when I see anyone anywhere trying to one-up or downplay others’ stories, fears, pains, or troubles, instead of listening + acting in empathy over judgment. SO. If anything, if you feel so compelled after reading our story, try to look at moms with less judgment. If you meet a NICU mom, know that she’s probably not OK. Offer her a distraction to make her laugh, or a Bible verse to give her hope. Cook a meal (shoutout to Colleen for making us burritos for the freezer to take as our driving dinner on our CHOP runs – you da real MVP). Don’t say you understand – because even if you’re a mom yourself, unless you’ve experienced NICU life, the best intentions can’t make you truly understand.
We started at the NICU of the hospital where Olivia was born. Initially, she was just experiencing “typical preemie problems” – needing time to grow, and time to OUTgrow issues that inevitably arise when you’re not fully developed before existing outside the womb. Olivia was 3 pounds at birth, so girlfriend was obviously a peanut – but a fighting peanut, at that. With the hospital being 6 minutes from our house, we visited daily; I’d often spend most of the day at her bedside, sometimes with my laptop in tow to get some work done or answer emails, and then we’d come back together in the evening once J was home from work. We had a routine. We knew everyone on the L&D wing at the hospital, and everyone knew us. Olivia’s one real “problem” were the bradycardia episodes, where her heartrate would decelerate + her oxygen level would desaturate with it, sometimes to dangerously low numbers that required stimulation from nurses or doctors. No bueno. But alas, relatively “typical” in preemie world. Beyond that, she got up to 50 mL PO – or feeding orally via a bottle – and got to breastfeed twice before D-Day.
D-Day being the day we were almost discharged entirely – but what ended up feeling more like doomsday.
We were almost discharged. In fact, we were about ~2 days away from supposedly going home when the transfer happened. One morning, J + I had gone in the morning like usual – we’d drive separately so that J could visit and then head to work, while I’d just hang out at the hospital for most of the day (it was 6 minutes from our house – a total luxury). We had our visit, and J had left to head in to work for the day.
But, girlfriend wasn’t acting herself. She was suuuuuper lethargic (a very bad sign in healthcare), and she had multiple “episodes” in a few minutes. She had been having inkier-looking stools (meaning, blood), which they presumed were from a suspected milk protein allergy. They drew bloodwork. While I was feeding her then, her color started to change. And then her bloodwork came back positive for a suuuuuper weird bacteria: campylobacter. Weird, because it’s a bacterial strain almost NEVER found in children – let alone newborns that had never left a NICU before – and comes predominantly from consuming undercooked poultry. When the neonatologist saw – it was a five alarm NICU fire.
That morning was a total blur.
Nurses started running – actually running – into the NICU. I just remember being off in a corner of the shared NICU space, crying as I pumped, the medical team whizzing past. Our neonatologist came over to me to say she needed to be transferred immediately – where would I like her to go?
My gut reaction was just to say, “Where do YOU think she should go?”
She said, “CHOP“.
So I said, “Looks like we’re going to CHOP then.”
That day was just numbing for J + I. I called him to share the news and he headed back to the hospital to meet us. The transport team from CHOP was already on their way. When they arrived, they boxed up little Liv in a heated isolet + plugged her monitors in so that she’d be tracked along the way. I was allowed to ride in the front seat of the ambulance – J followed right behind, for the ride downtown. A ride we’d know all too well in the coming month. That can take an hour on a good day, or two hours on a bad. We got lucky – there are 100 beds in the CHOP NICU (compared to the 4 in our home hospital). They weren’t 100% sure if there would be an open bed for Olivia, and if not, she’d be sent to HUP’s NICU instead (the Hospital of the University of Pennsylvania – it’s also on Penn’s campus, where J + I met during my undergrad and his grad school time, and is right next to door to CHOP, aka the Children’s Hospital of Philadelphia).
And there we were. 28 days in NICU #1. Off to NICU #2.
To CHOP’s bed #96.
We entered CHOP through a back entrance reserved for emergency transports + transport teams and were greeted with an entire medical team ready to tackle Olivia’s case. Fun fact: The ambulance driver told me the farthest a CHOP transport team has had to go to pick up a sick kid was Australia.
Diagnosis: A “mysterious” infection and/or virus.
Also the brady episodes.
The weird part: Her bloodwork now came back negative for campylobacter. A blessing. But also a stress, in that girlfriend clearly had SOMETHING going on – her hemoglobin count was down *significantly*, as was her platelet count – and test after test came back negative.
CHOP was stumped.
And let me tell you – it does not feel good when the best children’s hospital on the planet cannot figure out what is wrong with your baby.
IV fluids, two broad spectrum antibiotics, + two blood transfusions later, and she no longer looked like a sick baby lying there.
They still had no idea what the mystery infection or virus was. They officially diagnosed her with central apnea, as well as reflux. She was put on caffeine for the apnea (apparently just like her mama already – #ButFirstCoffee), and Zantac for the reflux (which doesn’t actually lessen the reflux itself – just minimizes the symptoms of it, so that she’d be in less excruciating pain everytime stomach acid made its way upward into her little esophagus).
Fast forward a few days. I got a call from our hospitalist that she was approved for transfer back to our first hospital, since her case could be managed there and she’d be back to five minutes from home.
Literally 23 minutes later, I got a call back.
No more going back to home hospital just yet – she needed a swallow study from the speech team, to make sure she was not aspirating from the reflux. While she had been downing bottles like a champ before the mystery illness struck, now it was more of a struggle. She’d get tired and seem uncoordinated while feeding. So, the speech team was concerned. The medical team didn’t suspect aspiration would be an issue, but since hospital #1 doesn’t have a speech team, they wanted to cross that one off the list while they could at CHOP.
Turned out…her swallow study showed mild aspiration. (Bad, since it could cause pneumonia if left unfound/untreated).
That meant no going back to home hospital; CHOP preemptively figured that Olivia would be going home with the NG tube, and home hospital wouldn’t discharge babies with that since they have no in-house speech team. So, we’d have to stay at CHOP until discharge home.
Beyond that, she had to go back to taking only 5 mL of food by bottle, only 3x per day – the rest of her feeding would be through a nasogastric tube (an NG tube – the little tube going in her nose, through to her stomach). From 50 mL…to 5. We were devastated – it felt like such a step backwards. Beyond that, they were back to thinking she also had a suspected milk protein allergy. So they told me that I needed to go dairy free for two weeks before being able to reintroduce dairy-free breast milk over dairy-free formula. I’ve been SO LUCKY in that I had fabulous milk supply, especially in the beginning, to the point where my Russian neonatologist called me a cow. HA. But girlfriend was veeeeery sensitive to milk protein, so had to go for the time being.
Fast forward a few weeks and we have our first day without any bradycardia events! WOO. If we make it to 5 days event-free, Olivia can come home. HOME.
Next day…an event.
Next day…3 events.
Next day…7. freaking. events.
With every step forward came two steps back – or so it seemed. The #1 thing we kept hearing was, “She just needs to outgrow it.”
One of the most *frustrating* parts for us was the inconsistency/incontinuity in who from the medical team was seeing her. It was a different nurse every single day – MAYBE someone getting her two days in a row. It was a different doctor every two weeks, unless we requested one “primary” for her where all decisions went through (which we did). There were hospitalists, fellows, residents, nurse practitioners, + various therapists – speech, occupational, physical – seeing her regularly, all on their own rotations. Granted, I totally GET the want/need for variation in medical team, to both keep the team members fresh themselves, and to keep fresh perspectives coming to her case.
There were SO many occasions where I called in for my morning update and had to correct a nurse, who had her case file totally wrong. “She was on oxygen, right? Wasn’t she intubated?
No aaaaaand no.
I feel relatively well versed in medicine having so many exceptional nurses in my family, and being super interested in it myself (Probably would’ve pursued something medical if it weren’t for the fact that I pass out from blood tests – HA). Oftentimes I was left thinking, thank the sweet Lord Baby Jesus that I can comfortably talk the talk – because too often, it felt like they were relying on my own word instead of relying on her actual medical chart.
And sometimes, it felt like we were just guinea pigs for #science.
On her first day seeing Olivia, a nurse practitioner came into the room during our nightly visit and said, “The best geneticist in the world stopped by to check her out today. We can do a genetics test now if you want to test for a genetic disorder.”
“Do y’all think she has one?!? What would it be looking at? Is it what’s recommended? What exactly did she say!??”
Our questions spit out like rapid fire, and she was so thrown off – she went on to say that the woman hadn’t actually noticed anything “significant,” but it’s just an option that parents have. So now…do we freak out, or not? Is there reason for concern, or not? You don’t just flag down the top geneticist IN THE WORLD to come see a baby for no reason…do you?
It wasn’t until after she left when a particularly good nurse (a mother herself) gave me some #RealTalk, saying this woman was LITERALLY the best in the world and could look at you walking by in the hallway and tell you what was genetically wrong with you (legit). So if she saw nothing of concern – not to worry. But it was so much of situations like that – false alarm panic buttons, relatively unclear testing, or less-than-stellar bedside manner that left us feeling more confused or concerned than comforted.
And the feelings – so many feelings. Below is a compilation of notes that I took, day by day, with each passing moment or milestone missed in the NICU. I’m sure every experience is different, just like every baby and every diagnosis is different. And I’m sure some mamas have it better, and some mamas have it worse – just like some babies have it better or worse. And it’s not at all predictable, nor is it particularly fun – it’s just a phase.
And this phase hit me hard.
I tried so hard to stay as positive as possible, but I’d be straight up lying if I said it was easy, or that I was always full of hope or faith. I was shaky, at best.
I also had what I personally diagnosed as postpartum depression during this period. I was never quite sure if it was “actual” postpartum – a hormonal imbalance after giving birth – or more situational depression from seemingly unending NICU life, or a combo of both. And I’ll never really know. But hopefully my experiences/thoughts/emotions below make a bit more sense in that lense, and speak to the pains that many NICU mamas/parents face in an already nervewrecking period of new life. Especially when the #1 question you get asked is “How are you holding up?” and as a new mom without her baby and no end in sight – that’s a really hard questions to answer.
Someone else gives your baby her first bath. “She loved it!” they said.
Someone else snuggles your baby at night when she’s upset.
You walk in the room to someone else snuggling your baby, saying “Oh, she just loves to snuggle!”
You walk in the room to someone else holding your baby, saying “Wash your hands first!” before they’ll hand her over to you.
You watch your baby from home on a video camera. You see when she cries, and you count the seconds it takes for anyone to come to her aid.
You see the camera get pushed away and lose visual when it’s time to change a diaper, since someone else is doing that, too.
You spend four hours every single day driving to see her for two, and when you arrive, you can’t pick her up right away to snuggle – because it’s time to pump, so that someday, she can eat what you provide again.
You get a call from the hospital – that’s an hour and a half away – that Santa will be there in an hour to take pictures. But DON’T WORRY, they’ll put her in a cute outfit. Then you get an email later with the pictures, titled “Olivia’s First Christmas,” with a request for consent to be used for the hospital’s social media page.
You turn on the camera again to try to watch your baby sleep, to be met with a blacked out screen and a “Baby getting care” sign.
You turn on the camera when YOU can’t sleep, only to not see your baby there at all – meaning, she’s being held by someone else.
You have everyone and their mom requesting to come visit for the holidays so that THEY can hold your baby, and really, you just want to hold your own baby for once without interruption.
You’re on hold on the NICU phone line for 23:56 just to try and get an update of your baby’s general wellbeing, only to have to hang up and call back since no one bothered to pick up.
Every day is so long and so short in one.
You cry constantly.
Your hormones are all amok, and your baby isn’t with you.
You see her, and you can’t hold her first, because you don’t want to get tears on her face.
You keep reminding yourself it’s only temporary, but that temporary feels like forever. There’s no end in sight, so how long can you hold on?
You’re offered unsolicited advice by many, understood by none.
Can’t you just get a hotel by the hospital? Can’t you just stay AT the hospital? You should be on maternity leave by now. How could you be working with your baby in the hospital?
You feel sad – that your baby is seeing so much real world hardship before ever seeing the real world beyond a hospital’s four walls.
You feel angry – that this is seemingly neverending, with no satisfying answers or nearing finish line.
You feel frustrated – that a different practitioner is seeing her everyday. That you’ve explained the same situation to different people one too many times.
You feel hopeful – that a miracle will happen.
You feel jipped – of a “normal” birth. Of course, what is normal? Nonetheless, you feel jipped. You feel jipped of that time – of those moments.
And you’re mad at God. (Ouch – that’s a sucky one to confess). That’s the worst thing to admit. From the little bit I shared on Instagram in the moment, I said:
I don’t WANT to be angry at God. I don’t feel like I SHOULD be angry at God. Heck, He blessed us with the most beautiful baby girl – how can I be angry? But I’m still angry, about how this journey of events has gone. I keep trying to find purpose or meaning for this torturous waiting game. And while I could initially, I’ve been losing sight of that lately amidst the suffering of just wanting my baby to come home.
But like I said there, “Do not blame God for having created the tiger, but thank Him for not having given it wings.”
This tiger did not have wings. For as much as it sucked – it could’ve been worse. Which is not at all to minimize the pain we felt – because boy, was there pain – but to recognize the hope we maintained that that tiger could be tamed.
We tried to teach ourselves to not get our hopes up anymore. After 4 almost-homes, hope was hurting more than helping sometimes.
Halloween came and went, Thanksgiving came and went, Christmas came and went – all in the NICU.
And for as much as we wanted a “Christmas miracle” of her being home – she didn’t make that. BUT, she got a different kind of Christmas miracle. Because at 7 pm on Christmas Eve, she had her last event. And she was event-free since, being discharged on Day 5 – December 29th – to be home in time for the New Year. And I like to think that it was even more meaningful. Because it was on the night that our Lord came into the world as man. And it felt like God saying, I have come. I am here. It’s going to be OK.
So, there you have it.
73 days in the NICU.
11 days home.
We’re getting there.
Thanks for sticking with us.