Surviving Your NICU Baby

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This is it…the moment you’ve been waiting for! Your baby is about to be born. You can’t wait to hold them in your arms just as soon as they take their first breath and stare lovingly into their eyes, feeling their soft warmth on your skin.

Except it doesn’t happen that way. The baby is born, weighed, measured, and whisked away to the NICU (Neonatal Intensive Care Unit) before you ever get to touch them. You are stunned, confused, wondering what’s wrong, and how serious is it? 

Or maybe your water broke early, you’re carrying multiples, or you’ve been struggling with preeclampsia for several months and you knew that your baby or babies might end up in the NICU.

Either way, what does that mean for you? For your baby? What can you expect when you have a NICU baby?

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My NICU Baby Story

I had never seriously considered the possibility that my son would end up in the NICU while I was pregnant. My pregnancy was “totally normal,” despite being an “older,” first time mom at 37 years old. 

At the anatomy scan, I was told that I had a low lying placenta (placenta previa), but that most likely, the placenta would move during pregnancy.

And even if it didn’t, my maternal and fetal health specialist emphasized that the condition was not serious as long as I delivered via scheduled C-section.

Unfortunately, not only did my placenta not move, but at 35 weeks pregnant, an ultrasound revealed a secondary, much more serious condition–vasa previa

Some of the baby’s blood vessels were outside of the umbilical cord, exposed along the bottom of my uterus. Labor contractions could cause such delicate veins to rupture, leading to excessive bleeding–but not on my part, like in placenta previa, but the baby’s. 

The condition is so serious that, if you are diagnosed with it earlier in pregnancy, your OB will put you on hospital observation at 32 weeks and deliver you at 34. 

Surviving the Shock of a NICU Baby

I was shocked. 

And even more stunned when my health care team said I would be admitted to the hospital immediately for observation. I would deliver via C-section three days later–a full month ahead of my son’s due date.

35 weeks and 5 days gestation.

My OB downplayed the risk of a NICU stay, telling me that my baby would be much safer being delivered ASAP. She said that at nearly 36 weeks gestation, a NICU stay might not be necessary or only be brief. 

She emphasized that at this stage, a C-section was the safest option for the baby because labor could be fatal for my child. 

Of course I said yes. I was admitted to the hospital. I cried a lot that weekend, trying not to imagine the worst case scenario. But one thing I never really thought about seriously was my baby and the Neonatal Intensive Care Unit.

And I certainly never imagined that he would be in the NICU for another 5 weeks–37 days in total.

My Son and Underdeveloped Lungs

In my son’s case, his under-developed lungs were the issue that sent him to the NICU. At 35+5, many babies can breathe on their own–but not all of them. 

The fact that I had not gone into labor actually worked against us. Labor pangs squeeze the child’s lungs, releasing a substance called surfactant that helps the lungs function outside the womb. 

Boy babies are also more prone to this condition, known as respiratory distress syndrome (RDS). Being white is also an increased risk factor.

Because my son had RDS, this also meant that eating would be an issue. Many premature infants have to learn how to suck while also breathing normally. 

We rarely think about how complex a process eating-and-breathing is, but for a premature baby, developing this skill set is a major achievement. Many babies have to stay in the NICU just so they can learn how to eat and breathe at the same time.

Mom looking at NICU Baby
Surviving your baby’s NICU stay takes stamina, courage, and a lot of love.

Why Are Babies Sent to the NICU?

Most of us associate the NICU with premature or “preemie” babies; usually these are babies born before 37 weeks gestational age

Not all premature babies have to go to the NICU, but many do. Why? Because they have not developed completely and are not fully able to function outside the womb without medical assistance.

During the standard 40 weeks of gestation, babies gain weight, but the extra fat in the last month helps babies regulate their temperature outside the womb. 

Babies who don’t develop this fat and, thus, temperature regulating ability, often require supplemental medical care once they’re first born. This is where the NICU team comes in.

Another ability many premature babies are missing is the suck reflex, which allows them to eat outside of the womb. It does not start developing until 32 weeks and is not fully developed until 36 weeks

Similarly, the lungs are among the last organs to fully develop in utero, and babies born prior to 36 weeks are at risk for respiratory issues and need the specially trained care of NICU staff.

Micro preemies

Children born before 26 weeks are often called “micro preemies.”

They are born so early that there is no way for them to survive without intensive medical attention, and their very lives are at risk for survival due to premature birth. 

Micro preemies can arrive in this world due to unexpected labor or premature rupture of amniotic sac membranes (PPROM). They often require an extended stay in the NICU.

A good rule of thumb is that most premature babies will have to stay in the NICU until their original due date. But some go home earlier and some stay longer. And sometimes, the heartbreaking reality is that some NICU babies, especially those born before 26 weeks, won’t come home.

Fortunately, there are many NICU success stories, even for micro preemies. Some hospitals even celebrate those success stories on their websites.

If you are looking for success stories, try searching for micro preemie online communities and support groups!

More Reasons for a NICU Baby Stay

What many people don’t realize, though, is that there are many reasons (besides the standard ones mentioned above) that a baby can end up in the NICU. 

NICU stays can be due to ingestion of meconium during labor and delivery. Perhaps the baby has too much bilirubin (aka extreme jaundice) or has had complications from a breech birth

NICUs also attend to babies born with chromosomal translocations or any other abnormal condition.

Essentially, they exist to care for your baby, and thank goodness for them! 

What to Expect When Your Child is in the NICU

There are so many things I wished I had known before my son ended up in the NICU.

Although every NICU journey is unique and different according to the baby’s condition, I hope that the following list helps you understand what to expect at this difficult time.

1. Emotions

The emotions can be intense and overwhelming: fear for your child’s life, a sense of unfairness that your baby is not like other, healthy full term babies, and/or intense sadness.

It’s very hard to see your tiny newborn baby hooked up to what seems like a thousand wires, possibly in an incubator, and in the case of many micro preemies, without the ability to touch them.

2. Confusion

Doctors are not always the best at communicating with patients–or parents of patients. They use clinical language and tell you about your baby at times when it’s hard to concentrate on anything other than your baby. 

Some doctors try to avoid telling parents the names of the conditions of NICU babies, too. This happened to us–it took a week before anyone would tell us that our son had RDS–they just didn’t think it was necessary! 

3.Unfamiliar Environment

The NICU itself can be a scary place for people who don’t work in the medical field. It’s often kept dark to protect delicate preemie eyes

There are lots of machines with loud blaring alarms, hustle and bustle, and lots of people buzzing around continuously (nurses, nurse practitioners, doctors, respiratory therapists, other parents/families).

And unless you have a private room, there is zero privacy. If you want to sing your baby a lullaby, everyone is going to hear–ditto if you are crying. I got very good at sobbing silently in the NICU.

Blurry NICU baby

4. NICU Rounds

Every NICU has daily rounds–just like in a medical TV show. 

A huge gaggle of medical professionals show up, usually in the morning, and they use intense medical jargon to discuss the progress of each child in the pod, that is, the room in the NICU where babies are kept according to their conditions. (Most NICUs have several pods, and babies are usually grouped according to the severity of their conditions). 

After a while, the jargon becomes more understandable. But, it can be upsetting to hear your child spoken of in such a clinical and detached manner. 

It’s important to remember that the language doctors use, and rounds themselves, are meant to communicate the treatment plan to all members of your child’s medical team in a clear and precise way. 

5. Family and Friends Who Don’t Understand 

People often don’t know how to react to bad news, so they default to trying to cheer you up or give you advice when all you really want is someone to say, “I’m sorry. This sucks.” 

Expect that few people will truly understand what you’re going through–even fellow NICU parents, mostly because everyone deals with things differently. 

I had people tell me how their kids were born prematurely “but now they are healthy 13 year olds, and it’s all a distant memory!” This did nothing to console me while my son was in the NICU.

6. Lack of Firm Timelines & Ever-Changing Situations 

This is likely the hardest thing for parents of NICU babies to deal with (and their families, as well): no one can tell you how long your baby will stay in the NICU

Doctors can give you an estimate, but they are often wrong.

Some babies will be ready to go home much sooner than predicted, but in many cases, babies end up staying longer due to situations that arise during treatment. 

Anyone who says they can tell you exactly when your baby will go home or how long their baby will stay in the NICU doesn’t know what they are talking about. 

Further, NICU life is full of surprises. You will likely have to sign a document saying you authorize treatment for your child–and in many cases, that means that the NICU will not contact you when a new treatment is put in place. 

You might come in for your usual visit and find that your child is undergoing a painful or invasive treatment. Or maybe they are no longer in the incubator, they are off oxygen, their heart rate is elevated, or they just had their first bottle! And no one contacted you to let you know.

This can also be upsetting, even when the news is good.

There is Hope for Surviving YOUR NICU Baby

Having a child in the NICU is difficult. For many of us NICU parents, it’s the most difficult thing we’ve ever been through. And while not all NICU families have a happy ending, most overwhelmingly do. 

Over 99% of babies in the NICU go home to their families and most premature babies will “catch up” to their peers (in terms of growth and developmental milestones) within a year or two. 

Look up famous preemie celebrities, and you will find, among many others, renowned physicist Albert Einstein, politician Winston Churchill, and ballerina Anna Pavlova!

Regardless of whether your child was in the NICU for 3 days, 30 days, or 300 days (yes, it does happen), you will hopefully have them home with you, and, in time, those NICU memories will fade. 

As your child grows and develops, you will be all the prouder to see all that they (and you) have overcome!

What helped you get through your NICU baby experience? 

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