Becoming a mother is supposed to be a happy, carefree time. But pregnancy isn’t easy for everyone. There are many types of complications that can come up, from fairly mild to severe, though each woman’s experience (and each pregnancy!) is unique.
Being a first time mom, the furthest thing from my mind was spending time in the NICU (Neonatal Intensive Care Unit).
For me, I was so happy when I got that first positive test. I thought, “Wow, we’re going to have a baby!”
Baby. As in singular. Never did I ever think I’d be pregnant with twins, let alone identical twins with a rare complication called Twin to Twin Transfusion Syndrome that would have me giving birth at only 27 weeks with no notice, being rushed to the OR in a flurry of panic.
It was not the experience I dreamt about.
The first thing I did after finding out I was pregnant (after peeing on the stick) was call the midwife office I’d already bookmarked and chosen months ago. I hoped they had an opening for me, and they did. I was so excited for my first appointment and to start my journey of a “natural” pregnancy and delivery.
Ha! Clearly life had other plans.
That Feeling When You Find Out You’re High Risk
After my midwife sent me for a routine dating ultrasound, the complicated part of life seeped in. First surprise: it was twins! Second surprise: they thought they might be mono-mono twins (twins sharing the same amniotic sac) which are extremely high risk and typically require inpatient treatment at 24 weeks (viability) if a mother makes it that long.
Wow. On the same day, I was so excited (twins!) and so afraid.
This mixture of emotions would follow me every day of the rest of my short pregnancy.
Weeks later, they saw the dividing membrane and told me I had mono-di twins (same placenta but different amniotic sacs). Still risky, but much less so than mono-mono twins. Amazing! I thought all my worry was behind me.
I had read about TTTS, but with it only affecting about 10-15% of mono-di twin pregnancies, I didn’t think I would get it or have to worry about it.
I mean, there was an 85-90% chance I wouldn’t get TTTS – who wouldn’t take those odds in Vegas?
Clearly I should never gamble, because here I am, writing this in my boys’ NICU room on my phone as one of them recovers from brain surgery at 14 days old and the other failed an extubation attempt and battles pneumonia.
Living With a High Risk Pregnancy
After the ultrasound showing twins, my natural plans soon went out the window as I was no longer able to continue with my midwife office and was transferred to a high risk MFM (Maternal Fetal Medicine) doctor. At first I was sad about that. Later, I was grateful for the care I received when I found out not all women with mono-di twins receive the proper monitoring protocol as I did. I was lucky.
My MFM saw me a few times, and by the 18th week, had diagnosed Stage 1 TTTS. Again, I was gutted. When would this luck turn around?
Because that MFM didn’t actually treat TTTS, I was referred to yet another MFM, this time an hour from my house on a good traffic day.
At first, I was sad again. And once again, I would end up grateful beyond measure because that MFM saved my boys’ lives.
My first appointment took all day. They did hours of ultrasounds and tests. I met with several doctors on this team of MFMs who handle the highest of high risk patients across my entire province. I felt lucky to be in their care and they were easy to trust right away.
It soon became a routine for me to drive to the hospital an hour each way, two or three times per week for appointments that lasted anywhere from two to four hours in total. Sometimes the ultrasounds hurt, sometimes the potential news was upsetting, but my boys kept growing and I was convinced I’d make it through this and keep them in until at least 34 weeks.
I was convinced I’d be a success story.
Becoming a NICU Mom
Around 23 weeks, that started to change. My Baby B was getting far too much fluid due to TTTS and treatment was needed to prevent preterm labour. (‘Cause your body gets so big and thinks, “It’s time to deliver!” even when it’s not time.)
It may be funny to joke about getting so big from extra fluid (polyhydramnios) but it actually is one of the main reasons twins are delivered extremely preterm. The body just cannot handle the physical stress of carrying so much size and weight for long.
Things got serious. We attempted the laser surgery but were unable to go through with it due to a tricky anterior placenta and placement of my twins’ membrane.
From weeks 23-27, I underwent 3 amnioreduction treatments that drained a total of 10.2 litres of amniotic fluid from Baby B. Yeahhhh, dat hurt.
Right after the 3rd amnioreduction is when they decided I needed to deliver ASAP or neither baby would make it any further. I remember bursting into tears, knowing the risks of delivering 27 weeker sick twins with birth weights under 1500g. Off we went to the OR for an emergency csection and it was over before I knew it. (You can read my twin birth story here.)
It was traumatizing. Not because of the staff – everyone was so wonderful. But because of the circumstances, and the urgency. My babies were at risk, and there was so much fear.
I remember being in the recovery room, finally being able to wiggle my toes and being told I could go see my boys. It was about 2 hours after they were born and they wheeled me in my bed all the way to their NICU room as I still couldn’t walk. I remember getting to reach in and touch their arms briefly.
But it still felt surreal. Were these tiny doll like humans mine? Was I really not pregnant anymore? It didn’t seem real.
The next few days were full of excitement (getting to see the boys again!) and dread (the news of their likely long term disabilities). Having to have a conversation about quality of life and if we wanted to withdraw life support. We didn’t.
The NICU is full of amazing doctors and nurses, but it’s a hard place to be a parent. Here are seven things moms especially go through in the NICU (or at least what I’ve experienced in the first 3 weeks).
7 Hard Things a First Time Mom Experiences in the NICU
1. Hearing others with their babies in recovery.
One of the (unintentionally) cruelest things about having a baby or babies in the NICU is staying in the postpartum ward after delivery for a few days, surrounded by women with babies in their rooms.
You hear the babies crying, hear women and families happily chatting and laughing, and also see families being discharged, sparkly new carseat in tow with a fat little infant.
On the worst days, I cried when I heard babies cry through the walls. It wasn’t fair, I thought.
As a sidenote, hospitals should really have a separate area where moms with babies in the NICU stay after delivery…
2. Immense guilt all the time.
Let me tell you, mom guilt is real!
I felt guilty when I wasn’t at the hospital 24/7. But I needed to rest and heal from delivery too. I also felt guilty when I was there: when I went to leave, when I wanted to go outside for a break, or that I couldn’t do everything to take care of these babies (the nurses had to do most).
And even when I needed to leave the room to go eat! (Food is not allowed at the NICU my boys are at.)
What helped me was learning to do a lot of tasks. I change their diapers, take temperatures, warm up feeds, wrap them up, learned how to read the monitor numbers and why they went off, etc.
The more I helped out in caring for my boys, the more attached I felt, which brings me to the next point…
3. Lack of bonding.
Can’t touch or hold them. Having to ask to do things. Other people taking care of your babies. Not knowing how to touch them or change a diaper or what to do.
These are just a few of the ways you feel limited as a NICU mom and especially as a first time mom! Not on purpose, the nurses aren’t out to get you. It’s just that you can’t be what your baby needs right now and that hurts more than anything.
And… you’re not sure if you’re even bonded with your baby/babies? It’s hard to explain. You love them and you know you do. You’d do anything for them. But you feel kind of aloof, afraid for their survival, and maybe a bit emotionally numb.
You love them, but you feel it in your brain instead of your heart. At least right away the first few days. For me, I was almost afraid to get attached in case they didn’t make it. Which is ridiculous because this isn’t possible: you get attached.
This was the hardest part to deal with. For me, it took taking care of them to really be sure I was bonded with them. After a few days, the nurses let me change diapers, take temperatures, warm up their feeds and other regular tasks. It made me feel like their mom, to take care of them.
4. All the wires and alarms.
Sometimes it feels like too much. Are they suffering? Would I want this for myself?
Constant beeps and alarms, every machine with its own sound. After a few days you will know them all and be able to tell exactly what’s happening. At first it’s terrifying. Later, it becomes comforting. Now I am terrified of bringing the boys home and not having a “high tech” way to make sure they’re still breathing okay! How will I know if they’re desat-ing or if their blood pressure is low?
I know they wouldn’t send my boys home with any kind of serious issues like that… but still, the monitors become a false peace of mind you try to cling to. At least for me they became that after 2-3 weeks.
5. Friends and family not understanding.
Try as they might, no one can truly understand the NICU life unless you’ve lived it, day in and day out for weeks/months. You may have supportive family and friends that mean well, but sometimes their comments can sting (unintentionally), or they just don’t get what you’re going through.
I knew we would most likely face time in the NICU and I tried to mentally prepare myself for that and still failed horribly. Nothing can prepare you for it, and you cannot explain it to other people.
The best way to feel understood is to join NICU support groups either online or in person, or get to know other NICU parents in your hospital. It really is a case of needing to be there to get it.
6. Zombie tiredness status.
The NICU hustle is real. You may think that because you don’t actually have a screaming baby at home, that you’ll be able to get some sleep and recover from childbirth/generally be awake enough to be at the hospital 24/7.
No. You WILL crash and burn, it’s just a matter of time.
I think it’s more mental than anything else, from the stress. I live an hour-ish away from the NICU our twins are at, so it’s an hour each way in traffic and I spend an average of 10-12 hours a day there, plus getting home to tidy up, eat food and of course… THE PUMPING.
You are still waking up every 2-3 hours to pump milk! And for me, someone who’s always had sleep problems, it’s hard to sleep in small chunks like that.
Walking zombie alert! I drop stuff all the time, lose things, forget things, am unable to solve simple math problems (the alarm on my phone only turns off by solving equations), and so much more. I’m irritable, snappy, stressed.
Anyone will tell you it’s so important to take care of yourself too and get your sleep in… but honestly, you won’t. You’ll want to be at the hospital. You’ll feel guilty getting your Zs in (see point #2). So you just won’t, and then one day you’ll crash, get sick, cry or all of the above and realize you need a good sleep for once.
(Just don’t forget to wake up and pump stillllllll.)
7. Being out in the world like a normal person.
I didn’t go anywhere for three weeks after my twins were born. I went home and to the hospital every day and that was it. I ordered anything I needed off Amazon (thanks Amazon Prime!) and my husband was the one who got a few groceries here and there.
I was almost afraid to be out among normal people. I felt like I shouldn’t be there, when my babies were in the hospital. Like what was I doing shopping for pasta at Walmart while my babies fought for their lives?
I couldn’t imagine going anywhere. I still can’t as I enter the fourth week of NICU life. I haven’t seen my friends during this time or made any plans at all, because I just don’t feel like that’s where I should be right now.
I don’t belong in the world without my twins home, is what keeps running through my brain.
For now, I’m sticking with that and just go from Home -> Hospital and back.
Did you spend time in the NICU when your baby/babies were born? What were some of the hardest things you had to adjust to in those first few weeks?
Share below in the comments so other first time moms can try to prepare themselves. 🙂