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Earlier this week, it was National Multiple Births Awareness Day, a day celebrated by parents of multiples and the medical professionals who care for those babies to raise awareness of the unique experiences and needs of twins and higher order multiples.
Unique is certainly one way to put it. The things that happen in the neonatal intensive care unit (NICU) are life-changing—for the often-premature patients and also their proud, new parents, who wait anxiously to find out when their children will be well enough to no longer need round-the-clock medical monitoring and potential emergency intervention.
Navigating the unknown with your preemies is nerve-racking, to say the least.
Navigating the unknown with your preemies is nerve-racking, to say the least.
It is fraught with fright.
It's not something I wasn't prepared for. As a twin who was expecting twins myself, I was sure our boys would be born premature and would need to spend time in the NICU. In my mind, there was no question of IF they'd need NICU time; it was a matter of how much.
I learned a lot about the care our twins received as they continued to grow and worked on getting stronger.
After two weeks and four weeks, respectively, our Baby A and our Baby B graduated from the NICU and joined us at home. It was a magical day.
But getting to that day was a long road. One that not all parents have to navigate (and thank goodness for that!).
Of course, everyone's situation is different, and I don't want to make light of anything anyone might feel is significant to their birth story because everyone's story is magnificent—they brought life into this world.
There are full-term babies who have medical issues and need an incredible amount of care; it's just more common for newborn babies who require care and lengthy stays in the NICU to be born prematurely. And those who are born prematurely are, more often than not, twins or higher-order multiples.
The World Health Organization dictates preterm birth as a baby being born alive prior to completing 37 weeks of gestation. A "normal pregnancy" has a gestation period of 37 to 41 weeks.
According to this article by Sunnybrook Resesarch Institute on the risks of preterm birth, over 6,000 sets of twins are born in Canada each year, which plays a role in the country's current rate of multiple births, which sits around 1 in 31. Sunnybrook is home to Canada's first and largest specialized clinic for multiple births and houses a research centre focused on twin pregnancies.
Similar to the scene in Canada, the rate of multiple births in the United States has been rising for decades, with approximately 32 out of every thousand births being a multiple birth. According to Johns Hopkins Medicine, more than 60 percent of twins, and almost all higher-order multiples are born prematurely.
The earlier a baby is born, the more complications may arise.
Some of the medical issues premature babies battle include a low birth weight, trouble with temperature regulation, and lung and breathing problems...
Some of the medical issues premature babies battle include a low birth weight, trouble with temperature regulation outside of the womb, and lung deveopment and breathing problems (lungs that aren't fully developed can run into problems inflating with oxygen and can stick shut instead of filling; in this case, a newborn would need to be intubated and kept on a ventilator to help the baby breathe as their lungs continue to develop).
Other problems you may run into include issues with keeping your babies' feeds down or dips in their blood oxygen saturation. Beyond this, premature babies are at a higher risk for complications such as brain bleeds, holes in their hearts, cerebral palsy, and liver and kidney disorders.
And when your babies are born prematurely, you don't know which of these issues you might suddenly be facing with your newborns in the NICU.
Becoming a parent vs. becoming a NICU parent
Giving birth is supposed to be this amazing experience, but when your precious babies are born prematurely, it can become a traumatic experience that you may block out, to a degree, to get through the unknown of it all, to be there for your babies, and to come out the other side.
Becoming a NICU parent has its challenges. You're excited that your little (extra little?) bundles of joy have arrived.
You want to be strong for your children, but on the inside, you may be completely and utterly terrified.
This week, when Multiple Births Awareness Day popped up, I reached out to some other Preemie Parents who have lived the "NICU Life," and these are words they used to describe their experience.
Hard... Scary... Nerve-racking... Challenging... Chaotic... Anxious... Helpless... Defeated... Failure... Incredible
Navigating the NICU as your newborns strive to meet developmental milestones is one of the most worrisome, yet awe-inspiring, things you might do as a parent. There are many reasons why.
Your babies aren't always within reach
After our twins were born, the nurse in recovery pointed out the cruelty of the empty crib sitting at the end of my hospital bed—because, unlike many mothers, I didn't have the luxury of having my newborn babies within arm's reach or a quick glance anytime I wanted to make sure they were okay.
My babies were in the NICU and needed constant care that I couldn't give them. Thank goodness for the team of stellar medical professionals who worked around the clock to make sure our precious children had everything they needed as they worked on growing and becoming stronger each day.
One of the Preemie Parents who shared their experience with me had a hard road in the NICU for six weeks when her daughter was born 11 weeks early. She had been hospitalized a couple of days prior to the delivery, so her baby was lucky enough to have received three out of the four steroid shots to help develop her lungs.
But almost immediately after her daughter was born, a team of seven medical professionals swept in and whisked her baby off to the NICU, which was in a different building at the time. She recalls the worst part not being able to see her daughter until the next day, having to wait with fear until they were reunited. To this day, over 40 years later, she hasn't forgotten what it felt like to be able to hold her baby for the first time after she no longer needed an incubator for temperature regulation.
It's exhausting juggling everything
Friends or family may tell you that you "get to ease into parenthood because they're not at home with you right away," but the truth is, having children in the NICU can be emotionally–and physically–exhausting.
Try as you might, you can't be there 24/7 with your twins—and all you want is for them to be able to come home with you. Leaving your babies behind at the end of the day feels like you're leaving a part of yourself behind because…well, you are.
If you're a first-time parent, you might be learning how to breastfeed your children behind a ghost of a privacy curtain in the NICU. Nothing prepares you for a parenthood filled with multitasking like not trying not to pull off your baby's medical cables as you get them settled against your chest, the sound of strangers chatting three feet away from where you're sitting as you're trying to feed your baby, or the wind of a passerby fluttering your privacy curtain as they zoom by).
Speaking of milk, creating enough supply for two babies can be interesting. I had a great supply, thanks to a rigorous pumping schedule (I loved my Medela double electric, hands-free breast pump), but in the early days, our boys were very lucky to be eligible to receive donor milk, which helped them get a leg up while my supply came in. Whether you're planning to breastfeed or not, you may need to pump (even just a little) to relieve the build-up of pressure as your body produces milk.
Medela Freestyle Hands-Free Breast Pump
This is the Medela Freestyle hands-free breast pump. It will allow you to maximize your time while pumping.
On the physically exhausting side of things, instead of sleeping in, you're waking up even earlier so you can pump if you need to, pack up your freshly pumped milk in a cooler, and drive to the hospital to be there ahead of the daily rounds. This usually includes much more walking than is advised while your body is still recovering from your pregnancy and delivery, and then you spend as much time as you can with your babies before you drive back home and wonder how they're doing without you.
Meanwhile, back at home, you may have other children who are wondering why they haven't seen as much of their parents lately. One of the Preemie Parents I talked to felt like she had to choose between neglecting her three-year-old daughter or neglecting her newborn babies, who were born six weeks early and had to spend two weeks in the NICU. The only way these parents coped was by keeping their daughter in daycare for those couple of weeks, so that there was time to go to the hospital during the day.
You may feel judged for many of the decisions you make
While the medical professionals taking care of your preemies are incredible and provide impeccable care, it's possible, sometimes, for them to forget how many cogs and wheels there are in every parent's day to day schedule. Most NICU nurses will kindly encourage you not to over-extend yourself before your babies come home, but some may imply you aren't doing enough or spending enough time at the NICU.
Every parent is different, and every day is different.
One Preemie Parent we talked to felt judged for the amount of time she was spending at the NICU with her twins, when she was already spending as much time as she could with her babies, who were born almost 10 weeks early, before rushing off to the babysitter's to round up her two eldest children and get dinner on the table at a reasonable hour.
You'll jump right into Kangaroo Care
At the NICU, you'll learn about the importance of Kangaroo Care by spending some time getting to know the newest additions to your family during skin-to-skin sessions that usually last anywhere from 45 minutes to 90 minutes or longer.
Not only does it help your babies, it helps you, as caregivers. It stabilizes your babies' heart rates, improves their breathing pattern and makes breathing more regular, improves oxygen saturation levels, increases sleep time, promotes more rapid weight gain, and helps with breastfeeding.
As parents, Kangaroo Care improves bonding with our babies, increases a mother's milk supply, and decreases the chances of postpartum depression, which can affect both moms and dads.
All great reasons to snuggle with your babies.
Your babies may struggle to regulate their temperatures
Premature babies have trouble regulating their temperature. Our older twin did well, but our younger twin, who was born almost a full pound lighter than his brother, was running cooler and had to spend a week in an isolette to keep his temperature consistent. The nurses made sure he had a fun blanket on his incubator that matched his bedding and onesie.
Once he was able to keep a consistent temperature, he graduated to his own crib (another NICU milestone reached!).
But until that point, that meant we had to learn how to change diapers on a fragile baby—with the added challenge of having to reach through the small insulated doors of the incubator to get to our baby and make sure not to disrupt any of the little, medical wires that were attached to his little body.
There's an added obstacle at bathtime
As if bathtime for your newborn twins wasn't already worrisome enough (most premature babies are so tiny, there's a fear of hurting them or having them slide right out of your hands and under the water), you now get to incorporate the extra level of stress that comes with learning how to bathe your little one but having to first carefully remove from their chest the obstacle that is a handful of adhesive medical wire leads that monitor your babies' heart rate, blood oxygen saturation, and number of breaths.
You'll witness your baby's necessary discomfort
Part of the threshold for qualifying to come home is how much milk or formula is being taken in. For premature babies who won't take a bottle or breast, can't keep their feeds down, or are just too plain tired to stay awake long enough to finish a feed, the gavage becomes part of the daily routine. The little tube is fed into their noses and goes directly to their teeny, tiny tummies.
When a preemie gets too tired to finish breastfeeding or bottle feeding, the rest of their feed can be given by gavage, to ensure they get the right amount of milk. Some babies, like ours, dislike the feeling of the tubing up their nose (and who can blame them?!) and will rip the tube out of their body—repeatedly. While you'll want nothing more than for them to be comfortable, you have to be sure they're getting proper nutrition, so the feeding tube is necessary in certain situations.
They may require phototherapy
Pre-term babies run a higher risk of developing jaundice in their first week of life. Caused by a build-up of bilirubin in the blood, sometimes, it resolves itself without treatment.
Both of our twins underwent phototherapy when their bilirubin numbers were high, and they wore bili masks during their sessions.
They may receive life-changing, emerging technological care
Technology is constantly changing, research is always being conducted, and medical procedures are always evolving. Strides in technology can make it possible to receive life-changing care that previously wasn't available.
One Preemie Parent clearly recalls the day her daughter, who was born two months early, was hooked up to a brand-new, state-of-the-art ventilator to help her breath while her lungs continued to develop. She was the first baby to receive this innovative level of care and made the news. She spent two months in the hospital, growing and getting stronger, before she was ready to go home with her family, but the technology made all the difference in her time spent and progress made at the NICU.
The time of year in the NICU can affect the rules
Depending on when your due date falls (and when your twins ACTUALLY arrive), you may or may not be able to have visitors...even immediate siblings of your babies.
One Preemie Parent gave birth to her twins at the start of respiratory syncytial virus (RSV) season, before COVID ever happened. Even then, the NICU did not allow siblings at all unless they were twins of NICU patients, which made it tricky to introduce an eager older sibling to the two new kids on the block.
You can bring about change to certain rules
While many hospitals have evolved over the years to embrace the love and bond of a family, it wasn't always that way.
One Preemie Parent, whose newborn twins had to spend just over two months in the hospital, had a hard time juggling time spent with her two eldest children and her two newest additions.
To make matters worse, due to childcare constraints, she had to bring her two eldest kids to the nursery but was unable to bring them inside to meet their twin siblings due to a rule enforcing that no children enter the nursery. So, the five- and three-year-old watched from afar, through a window, as their mother cared for their brother and sister, until a supervising doctor witnessed what was happening and discovered the two young onlookers hadn't been able to meet their siblings yet.
The policy changed that day, and paved the way for family rooms in hospitals where siblings can meet, hold, bond, and spend time with their premtaure siblings who are in the NICU.
One twin may have to stay behind
Be prepared for the reality that both babies may not be ready to come home at the same time. While it's so nice to have that first baby at home, it also sucks because you know your other little one isn't there with the rest of your family yet, which is sad but also logistically difficult.
Now, instead of both parents going to see their babies in the NICU, one must stay at home with Baby A, while the other goes to the NICU to see Baby B. Instead of going to the hospital and breastfeeding or pumping for both babies, you need to make sure there's enough milk (or formula) at home for Baby A for however many hours you'll be at the NICU.
This is exactly what happened to us. And it came as a surprise, because I had never considered my twins would not be ready to come home at the same time.
...it came as a surprise, because I had never considered my twins would not be ready to come home at the same time.
My twin brother and I went home from the NICU on the same day. My sister's twins went home from the NICU on the same day.
My twins went home two weeks apart, and I was not mentally prepared for this possibility; it had never crossed my mind. I just envisioned they'd both come home on the same day, and we'd all go home as a family.
When your twins graduate from the NICU at different times, things get tricky. Multi-tasking becomes a next-level skill.
Logistics and planning become a main priority and will have you dividing and conquering pediatrician appointments with one twin, while trying not to miss rounds with the other twin, who's still in the NICU.
One parent will now have to stay at home, caring for one twin, while the other parent logs time at the NICU. Meanwhile, both just wish that everyone could be together at home, and you're all just sitting around, waiting for that day to come.
It's hard, but oh-so-rewarding
Time spent in the NICU can be scary, difficult, and stressful. It can seem like there's no end in sight.
While everyone's experience will differ depending on how premature their babies are and what complications they have to deal with, one thing most NICU parents can agree on is that the best and most rewarding part of the experience is when you find out your babies finally get to come home.
These wee, little warriors are supercharged with Preemie Power. They are the youngest graduates you'll ever know. They are the graduates of the neonatal intensive care unit.
They grow up so fast, don't they?
Were you a Preemie Parent who had to navigate the NICU right after your twins were born? What was the hardest part for you? How did you cope during that difficult time? What was the most rewarding moment for you? Let us know in the Comments section below.
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