In April 2023, my water broke unexpectedly at 33 weeks and 6 days, and I ended up giving birth to my daughter Naomi the next day, at 34 weeks gestation exactly. Although this wasn’t our first rodeo with having a preemie who needed to spend time in the NICU, this time around we were there for much, much longer (nearly six weeks compared to just a few days). I knew it would have been helpful for me to read about another mom’s account of the experience while I went through it (or right before, when I knew going into it that we’d be there for awhile), so I’m sharing my experience here in case it can help someone else. I decided to break this into a three-part series, just so the post wouldn’t be crazy long.
In today’s post, I’ll cover first things first — namely, how we ended up in the NICU and how my pregnancy had gone leading up to that point, followed by the logistics of how we actually managed things between home and the hospital during our six week stay. Part Two will cover the chronological timeline of events and the emotional roller coaster we went through, and Part Three will cover some of the miracles we saw and the lessons we learned.
Pregnancy and childbirth have always been a little bit more on the complicated side for me. In addition to experiencing at least three miscarriages (I actually think I’ve had four, but one was very early), I’ve also had life-threatening complications while delivering, as well as the worrying trend of each of my babies coming sooner than the last. My oldest was born right on her due date, then my second at 37 weeks, my third at 35 weeks and 5 days, and finally my last at exactly 34 weeks.
So even going into what we knew would be my final pregnancy no matter the outcome, my husband Matt and I were prepared for the very real possibility of our baby being born prematurely, maybe even more so than with our third. Even knowing about that possibility didn’t fully prepare us for exactly how the story ended up unfolding, however. With my third child, who had been born at 35+5 weeks gestation, I’d been experiencing strong prelabor symptoms since 24 weeks along. With this last pregnancy, I didn’t have hardly any prelabor symptoms at all, so Matt and I were feeling pretty hopeful that I might even be able to make it to 37 weeks before the baby came, and my doctor felt the same way.
To everyone’s surprise though, my water broke out of the blue when I was one day shy of being 34 weeks exactly, and although we rushed to the hospital (a 90-minute drive away) as fast as we could, my body actually didn’t start going into labor on its own, but my doctor opted to induce me the next day anyway after I’d received steroid shots for the baby.
For the full birth story, you can check out this post, but I just wanted to give a little bit of backstory before I launched into the specifics of our NICU stay.
To make a long story short, I delivered my daughter Naomi at exactly 34 weeks along and had a relatively uncomplicated delivery (for me, especially), and we found out soon after birth that she had markers for Down syndrome, which was later confirmed with a blood test. Her diagnosis was a total surprise, but we felt strongly that she came exactly as she was supposed to and was perfect just how she was, so after the initial shock wore off, it just became a part of who she was but not the defining part, if that makes sense.
It is important to note her Down syndrome, however, because it definitely had ramifications when it came down to what happened during our NICU stay and WHY certain events unfolded like they did. I’m going to go over the entire timeline of everything that happened in Part Two of the series, but for today’s post, you just need to know that we were told very early on to expect to be there for a minimum of 5-6 weeks due to her diagnosis, so we knew from the get-go that we’d need to do some settling in.
Because we had three older kids already and lived an hour and a half away from the hospital, things got really tricky, really fast. My husband had some PTO time available, but definitely not six weeks’ worth (and no paternity leave option), so we knew that he was going to have to go back to work for the majority of the time we were in the NICU. Because I was pumping milk for Naomi and wanted to spend time with her as much as possible, we also knew that we would need to look into options for me to stay up by the hospital. Thankfully, we have two out of the three sets of our parents that live in the state, and thanks to their willingness to make huge sacrifices of their time and commitments and move around a lot of their own obligations and responsibilities, we were able to plan out a schedule week by week that meant that one set of grandparents took over watching our kids for 2-3 days a week, then they’d be relieved by the other, then on the weekends, Matt and/or I would be at home with the older kids.
Every weekend we basically “talked logistics” with everyone so that all parties knew when to be where, and what to expect. Once the kids were out of school for the year, it got a little easier because there was one week where our kids just made the two hour drive up north to stay with the grandparents at their houses, since my in-laws and my mom and stepdad only live about 8 minutes away from each other. The rest of the time, it was usually my in-laws coming Monday morning to relieve me (since I usually spent Sundays and part of Mondays at home with the other kids), then my mom usually came down Wednesdays to take over in the middle of the afternoon and would stay until either Thursday night or Friday morning/midday. Matt would usually take Fridays off, and either he would bring up the whole family to the hospital to spend time together and switch me places, or he would watch the kids until I got home for the weekend. Every week was slightly different and every week took intensive planning, but somehow we were able to get everyone where they needed to be.
In case you were wondering, they only let siblings come into our hospital’s NICU if they were 5 or older and if you could show proof that they were fully vaccinated (including COVID and flu shots). Because our boys were too young to meet the requirements, only our oldest (who had just turned 8) was able to actually come into the NICU to hold Naomi — the boys could just look through the window (pictured above).
A few things that really helped us with the logistics side of things:
- I wrote down a “master list” every week that I taped on the fridge so everyone could look and see what needed to happen on any given day. On that list, I also included things like the address of my daughter’s softball game, or if one of my kids needed to bring something to a party. We didn’t do this the first week or two, and some things slipped between the cracks as a result. Once I started making as detailed of a list as possible, things went more smoothly for everyone, and I wasn’t having to field constant phone calls throughout the day about who was supposed to be where.
- Even though I desperately wanted to be in both places at once, I obviously couldn’t be. So I tried as much as possible to just be present with whomever I was with at the time, whether that was Naomi in the hospital or my other kids at home. It was also nice because our NICU had 24/7 calling access, so I could call at any point during the day or night and talk to my baby’s nurses and get updates. The hospital was also pretty good at calling me whenever I was gone for more than about 16 hours.
- We tried to keep our older kids to a normal routine as much as possible so that they could have some sense of stability and comfort during a really stressful time. However, we also recognized that we had to be way more flexible on some things (like how much screen time our parents allowed them to watch) just because of the circumstances.
- Because my flower farming season had started by this point, I planned ALL of my business activities on days when I knew I’d be home, which was usually always Monday in the morning and early afternoon. I had many neighbors who offered to help with farm chores, and we did take many of them up on those offers so that our farm could continue to go on.
- Going along with #4, we definitely learned early on that we were going to have to rely on other people to get everything taken care of. Often we were able to get things taken care of between Matt and me and our parents, but not all the time, so we had to rely a lot on neighbors and friends as well. I learned to just accept specific offers of help whenever they came, because we really did need them most of the time.
When it came to the logistics of lodging, one huge blessing was that a couple days after I myself was discharged from the hospital, a guest room at the hospital’s “hotel” option opened up for me, which allowed me to basically be as on-site as possible for an affordable price. I don’t know how many hospitals have this option, but I would imagine that most hospitals with a NICU likely would. Basically what it is is low-cost housing for families who have an immediate family member requiring longer-stay care in the hospital. The “hotel” doesn’t provide the usual amenities that most hotels do (for instance, no one cleans your room while you’re staying there; you can just borrow cleaning supplies and a vacuum), and you’re responsible for your own toiletries like shampoo and such. I did have access to laundry services and extra towels and toilet paper, but I had to go restock them myself from the supply closet. My hotel room cost just $25/night, and I was able to stay there for the duration of my daughter’s NICU stay, minus a few days at the beginning when there wasn’t any available.
My hotel room had a microwave and a mini fridge, so I usually went and stocked up on groceries for the week to store in my fridge, and I also ate out for one meal per day (usually lunch). Because of our car situation, there were some weeks when I was basically stranded up by the hospital without a vehicle since Matt needed a car to commute to work or to the hospital, and our parents needed our minivan to transport all the kids. We often could work it out that we could use whichever parent’s car was also at our house at the time, but it didn’t always work out logistically, so thankfully the hospital was within walking distance of plenty of food options (not to mention had an on-site cafeteria), as well as a small Target.
Since I was pumping milk, the hospital rented me a top-of-the-line breast pump through my insurance, which I would just bring home with me on the weekends whenever I left the hospital. I was able to build up enough of a milk stash at the hospital that I was always far ahead of what my daughter actually needed, but if I hadn’t have been able to keep up enough supply, you can have the option of using donor milk. There was also an option of having a courier come and collect breast milk from me if I had to be away from the hospital for several days, but I never had to use that option.
Because I only ate out once per day, carefully planned out when I’d go home, walked where possible, took advantage of the hotel option, etc., our family’s extra expenses for the NICU stay (gas, lodging, food, toiletries, etc.) came to about $1500, about half of which was just for the cost of the room. I could have gone even more frugal by never eating out, but it was good for me to have a hot meal option every day and to take that break. I share that number though just because I would have appreciated a ballpark figure from someone else before I went into it!
Coming up in Part Two, I’ll be covering the chronological order of events and the emotional roller coaster of the whole experience, so check back for that. In the meantime, please feel free to ask me any questions you might have below!