If Mom went on a tour of the hospital where she'll deliver, chances are she'll never think to check out the NICU or neonatal intensive care unit. No pregnant woman expects her baby to wind up in the NICU, but every year 10 to 15 percent of babies born in the United States (that’s about half a million) do for reasons including prematurity (born before 37 weeks gestation), heart problems, birth defects, breathing irregularities and infections, just to name a few. And although the chances are small if you carry to term, if things go wrong at birth, this high-tech nursery could be your baby’s home until he or she is healthy and strong enough to leave.
There is no question that medical science has made huge advances in neonatal care. But even with these immense strides, the NICU can be a scary place for already worried parents. Most parents feel like they have little control over the fate of their new little one and are struggling to keep it together at a time when they would be celebrating – that is if everything went according to plan. New moms may not want to know what goes on in the NICU but there can be a sense of empowerment that comes with having that kind of knowledge. Maybe you will be one of the lucky ones and never have to experience this. But chances are, you will encounter someone in your life who has had their little one require neonatal care, and your knowledge may end up to your benefit. So I bring you 15 things that happen when your baby ends up in the NICU.
15Mom Can’t Hold The Baby At First – And When She Finally Can It’s Not For Long
In most cases, mom and baby have to stay separated, especially at first. This can be terrifying for a new mom, who knows her little one is struggling but she can’t do anything to comfort them: “Those two days felt like hell. Why could the nurses hold him or move him around, but we couldn’t?” Asks one mom who was kept from holding her little one for the first two days of his life. “The day we finally held him was so amazing, except we couldn’t hold him for longer than 10-to-15-minute periods because his body temperature could drop. It was bittersweet.”
Their baby, like many other babies born prematurely, ended up spending yet another two days in what’s known to NICU moms as the “tanning bed” (it’s actually called Bili lights) to help lower the baby’s high bilirubin levels and treat jaundice. Mom reports not being able to hold him on those days either. It’s very scary not being able to hold your baby and there is often a lot of anxiety because of it.
14There Is A Power Struggle Between Nurses And Parents
A lot of new moms of preemie babies know the truth: there is a constant power struggle between some of the nurses and the new parents – and it’s not always pretty. A mom whose baby is in the NICU knows that the power struggle will go back and forth and that every nurse is different. Some nurses will be willing to let parents hold their baby, or change their diaper, and try to feed them. But other nurses can be more cautious and can deny a request to feed your newborn because of fatigue or sanitary reasons. They may even counter a request for skin-to-skin contact.
While I’m sure many of nurses are great, all moms know that the feeling of not having control of your own child’s life is terrifying: “I’m eternally grateful for the nurses and doctors who advocated for us and allowed us to feel like parents because they knew it was what we all needed”, says one mom whose son was in the NICU for a few weeks, “it helped us feel more like parents”.
13Every Day Is Different And It’s Terrifying
One of the worst parts of having your little one in the NICU is that it is a very unstable world. Anything can change on any given day. “On day 19, we were told our beautiful baby would most likely come home that afternoon or the next. We were ecstatic. We went home to prepare the house, and while we were at home, we got a phone call that he had something called a bradycardia episode (meaning his heart rate had dropped) and couldn’t come home. He was put on 48-hour surveillance” explains one mom. “In the 46th hour before discharge, the alarms went off again, and our boy had another episode.”
Having a child in the NICU can be like running a marathon and getting so close to the finish line that you can taste it and then something happening that holds you back from the finish line. It is important for mom’s to go in hoping for the best but in turn understanding that anything can happen.
12The Baby Is Hooked Up To Machines And It’s Scary
In the NICU, each baby will have a specific feeding schedule, most will receive medication and some may need help with their breathing. This means that there will be feeding tubes, heaters, IV lines and monitors connected to your baby. There will be A LOT of cords and tubes attached to your baby, which can be startling for visitors and heartbreaking to mom and dad.
Remember that these units and all of the machines they use are there to help your baby, and it's good to ask questions to better understand how the process and machines work to calm your own worries. You baby is better off with all these machines, and the more a NICU mom tells herself that, the easier it will be.
11The Term “Whimpy White Boy” Is Used By Doctors/Nurses
Did you know “wimpy white boy” is a commonly used term in the NICU world? I sure didn’t! There is a trend among doctors and nurses to use this term because statistically Caucasian males tend to be the last ones to leave the NICU. I know, it sounds crazy, but it is true.
The term “wimpy white boy” or “wimpy white boy syndrome” is often given to premature white males, because they tend to have underdeveloped lungs at birth and often aspirate fluid into their lungs. (Premature African American females tend to be the opposite and statistically leave the NICU the fastest). Although this sounds like a defeated term, if you are told your son is a “wimpy white boy” there is a really good chance that the nurses and doctors are just want to put your mind at ease that this is normal for them to spend a little longer in the NICU. “Wimpy White Boy Syndrome” is not a formal diagnosis by any means and in most cases their breathing tends to normalize within a few days.
10You Don’t Know When The Baby Is Coming Home
One of the most common questions NICU parents get from well-wishing friends and family is about when they'll be able to bring their baby home. But often that's not definite and can be rather crushing to hear over and over again. And even when doctors do give a timeline, it can change quickly -- and make a difficult situation even harder.
"The doctors originally told us five or six days, so every day we had a vision of walking out of the hospital with our boy," one mom said. "But every day the doctors would say, 'Not yet. Maybe tomorrow.'" Hearing this over and over can be extremely frustrating for new parents and can feel like a never ending battle. But it’s important to remember that your baby staying a little longer in the NICU is in their best interest – and not some elaborate plan to keep your from bringing your little one home.
9Mom Can’t Stay With The Baby All The Time – And Its Heartbreaking
One of the most difficult things about having a baby in the NICU is a new mom being discharged from the hospital without her baby. "Every day we had to walk through our front door and look at our empty nursery," says one mom. "People would say to us, 'Oh, at least you get to sleep,' but we would have given anything to have [our baby] home with us."
Leaving a sick baby is also terrifying and can be heart wrenching in itself. But sometimes circumstances don’t allow you to stay with the baby. Perhaps you have other little ones at home or maybe the hospital chooses to suspend visitors to the NICU because of an emergency (yes that can happen), requiring you to go home and wait. Waiting by the phone would be very difficult – every time the phone rings, you would be wondering if it was a doctor calling with bad news. I think it is important for NICU parents to take it one day at a time and celebrate the little improvements that happen every day with the knowledge your baby will be in its nursery in due time.
8Things May Go Downhill Without Warning Signs
Whether you’re giving birth or in the NICU, there’s always the chance that something can change for the worst and without any signs or symptoms. This can be extremely frustrating for new moms because it either takes you by surprise or all the progress your baby has made in the NICU in simply brought to a screeching halt. Things could be progressing normally and then all of a sudden – bang! Youyou’re your baby are surrounded by 20 people who are trying to help divert a crisis.
One nurse explains that she always expects the unexpected: “We'll have moms that go in for a routine blood pressure check or a regular OB/GYN appointment. Then, for whatever reason, they're sent to us immediately and they deliver. It happens so fast that they don't have time to prepare.” Often things are out of mom’s control in the NICU and there’s nothing that can be done about it.
7Staff And Babies Are On A Schedule – Separate From Mom
When a mother of three, gave birth to her twins 16 years ago, they each only weighted one pound. They were immediately sent to NICU units in two different hospitals because each required different levels of care. One thing this mom says she still wishes she’d known was that both her babies and the staff were operating on a strict schedule – that she had no say in whatsoever: “The nurses wake the babies up every 3 to 4 hours, depending on their schedule. They change their diapers, take their temperatures, hold their feeds up in the tube or practice bottle-feeding them. If a mother is not on that ‘wake schedule,’ they're not allowed to touch their baby.”
While much has changed in neonatal intensive care in the past decade, the schedule advice still holds — knowing your NICU schedule can make life much easier for parents. As one nurse explains, “Educating the parents to show up on the babies’ wake time is crucial because then the parent can change the diaper, hold the baby, feed the baby… all the crucial things that a parent wants to be doing.”
6You Will Feel Disconnected From The Baby
If your newborn baby is in the NICU, it is incredibly fragile but still needs all the touch, love, smell, and interaction that a regular baby needs, only in smaller and less aggressive ways. Your baby’s neurological system and brain are still developing at a rapid pace. Sometimes this means the NICU moms don’t get to connect with their babies the way they would like to because of how gentle parents need to be and because they are only able to hold their babies at certain times. Sometimes this is difficult if you have other little ones at home or if you live far away from the hospital.
Not being fully available to connect with your baby can be heartbreaking but fortunately, there are other options. You can get special permission for aunties or uncles to come and hold your baby. Also, most NICUs let healthy grandparents visit without mom or dad present, and grandparents are usually more than happy to come and hold your baby. It is no surprise that babies who have consistent family interaction at the bedside often do much better in the long run.
5Mom Can’t Come Visit The Baby In The NICU If Mom's Feeling Under The Weather
As hard as this is, your baby and many other babies in the NICU are extremely fragile with immature immune systems. This means that if you are unwell, even a little, you’re not advised to see your baby at all. Hospitals do their best to stop the spread of infections to all newborns in the NICU. A cold to you or me means a breathing tube and a breathing machine for a premature baby and a backwards health spiral.
DON’T RISK IT! You can still call to check on your baby and some NICUs are even equipped to do FaceTime. Ask your nurse how you can stay connected when you are unable to be there, most of them would be more than willing to help you if it benefits both you and your little one.
4The Baby Won’t Be Released Unless They Are Gaining Weight
Your baby may be improving substantially: breathing on their own, eating well and regulating their own body temperature. But if your baby is not gaining weight, there is a good chance they will not be released from the NICU. One nurse explained that the ultimate test of discharge readiness is doing all of the above three things, AND gaining weight.
Steady and adequate weight gain is essential for a baby to thrive. All of the above tasks take energy to accomplish, and, after all is said and done, your baby must do all those things and still have enough energy left over to gain weight. Most hospitals have tools to help you track your baby’s progress and it is a good idea to do so! Charting can help you get a realistic picture of your baby’s growth achievements.
3It Hurts. Physically.
Not only are you torn up emotionally over your baby being in the NICU, but you as a mom also have to cope with your own recovery from giving birth and/or possibly surgery. You may have just had your abdomen sliced open and hands shoved inside you, moving your organs all around. Or maybe you were a “lucky” preemie mom who had her baby the old-fashioned – trying to push a watermelon out of a pinhole. Either way, it hurts. A lot.
When your baby is in the NICU there is a lot of waiting.. and waiting… and more waiting. Sitting in a chair for hours on end is excruciatingly painful to a mom who just had surgery or giving birth. Not to mention just getting to the NICU is a marathon in itself because your energy is so depleted. Some women take longer than others to recover and there is no shame at all in this. Don’t be afraid to ask the NICU nurses to help you with difficult tasks, like standing up.
2If You’re Lucky, You’ll Be Really Bored
“I was never so happy to be bored in my entire life”, explains one NICU mom. When it comes to neonatal care, every day is different. The NICU moves in waves, and for some babies, those waves turn into monstrous hurricanes, while for others those big waves are interspersed with long periods of boredom. If there is ever a place you hope to be bored, it’s the NICU. But some babies are in the NICU for weeks or even months – and bored is bored. There is no need to feel guilty for feeling this way (and it’s okay to want to bang your head into the wall for entertainment). Depending on what your hospital allows, you can read a book, play on your phone, or take a precious nap. You will need all the sleep you can get.
1You Never Stop Worrying About An Emergency
Once your child ends up in the NICU, your perception of their health is forever altered. This is one of the biggest realities that most moms don’t know about. The question marks that linger from having a child who was once medically-fragile are frightening and can remain with you as they grow up. And while they are surely nothing compared to the reality that parents with currently-sick or disabled children face on the regular, they’re still hard to come to terms with.
Preemie moms often find their thoughts moving to dark and scary places – and that means, sometimes, it’s really easy to feel totally alone. It is important for new moms to take care of their emotional and mental well-being as they cope with this trauma. Some preemie parents benefit from therapy to cope with these feelings, and that is nothing to be ashamed of – a happy mom means a happy child.
Sources: WebMD, ScaryMommy, SureBaby, BabyCenter
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