Doing Time: Navigating the NICU

I am speaking at the local Mothers of Multiples club on a panel about the NICU and hospital stays. Regular readers will know that I have *many* opinions on this topic. In fact, I have so many opinions on it that my first stint on lockdown is what started the words pouring out.

So below is a plethora of unsolicited advice: Doing time in the NICU is rough. It’s overwhelming.

Most new parents expect to leave the hospital with their newborn days after giving birth, dazed and confused about what to do once they get home. But what about the parents who return home while their newborn remains behind in the NICU? There are numerous articles deciphering the medical technology NICU parents can expect to encounter, but many of those parents then wonder what they can do to help nurture and bond with their child.

I asked our NICU nurses for their thoughts and advice. You’ve heard my perspective ad nauseam – but I thought answers from the other side would be equally beneficial.

Walking into the unit will overwhelm you. It will slowly become routine – but it will not get easier. Even going back to visit with two healthy jumbo tots still elicits a visceral reaction.

Our nurses assured us that their team do not expect the newly frazzled parents to remember all of the information being thrown at them. That little tiny person covered with wires is going to be taking up the vast majority of your attention. And the stress of giving birth at any time during the gestational period leaves little span left for attention.

Our nurses suggest that parents write down all of their questions. Bring them back later, your nurses will be happy to answer all of your questions to the best of their abilities. And don’t worry about asking the same questions repeatedly. Aside from the fact that they answer those questions for a living, you won’t remember what you’ve asked anyway. Nor will you remember the answers for several weeks – there is a lot to process. A lot.

The machines, blinking numbers, beeps, alarms – they will scare you. They will create a Pavlovian response that causes you to frantically turn looking to see breaths whenever you hear a similar tone. But the nurses know those suckers backwards and forwards. Your job is to focus on your new child. As the days, weeks, months drag on into what seems like eternity, those beeps and alarms will become nothing more than background noise. (Background noise that will forever scare the bejeezus out of you.)

And soon, you’ll have the knowledge on how to silence those alarms – and not by simply pushing the “defer” button. (No matter how many times you want to leap out of your seat and throttle the monitor with it’s beeps and numbers with their peaks and valleys.) But you’ll learn to gently stroke your baby’s back, encouraging your little fighter to breathe. (Breathe damnit, breathe!)

If your nurse isn’t right there to greet you, there will be another nurse to welcome you. Despite your fragile mental state, your nurse will be focused on making sure your physically fragile baby is stable. The nurses are not ignoring you – but for the same reason you’re there, that little child is everyone’s first priority.

Despite your irrational preemie-parent wishes, you will have a few different nurses taking care of your little one. It may be frustrating at times, but they are all trained RNs (registered nurses), they are all capable of taking care of your precious darling, and regardless of how much like surrogate parents they become – the hospital keeps sending them home to sleep. That being said, do not be afraid to express your questions, qualms or concerns. You are the parents; if you don’t “mesh” with a nurse, it is your right to speak up. (No one is going to “take it out” on the baby – who, let’s face it, they like better than you anyway.)

From the nurses point of view, they’d appreciate the acknowledgment that many of them have been doing this for a very long time. (The muppets primary nurses had 18 and 16 years of time in the baby growth correctional facility.) So, chances are, there is a reason behind their request on how to interact with a baby busy trying to master the concept of breathing in and out, over and over – forever.

Listen to the nurses when they explain what the prima donna preemie like or dislikes. For example, you’re going to want to hold your child as soon as possible – and reassure them that you’ll be there to protect them and make all the bad things go away. But sometimes, a little one is just too fragile and they may not be able to tolerate such strenuous stimulation. Neither your child, nor the nurse is trying to hurt your feelings. Instead you can simply be there for them, by placing your hand gently over their tiny body and quietly talking about mundane daily life and all there is to experience on the outside.

By the same token, try not to freak out if it feels like the nurses are pushing you to hurry up and parent. You’ll be standing over the intimidating isolette (likely fighting the guilt about how you couldn’t prevent this situation), and sending every vibe of good juju you can muster. The nurse will turn to you matter-of-factly, point to the stash of diapers that would comfortably cover about half of your pinky finger, and ask you to change your baby. Don’t worry – the nurse will be expecting your terrified look of incredulity. Maneuvering around all those wires and Barbie size limbs is scary, but if your nurse didn’t think it was safe to do so, they would not ask.

It’s your baby no matter the circumstance. You’d likely still be totally freaked out with a healthy 40-week newborn in the Mother/Baby recovery room. So now’s the time to step up. Your nurse will be there if you panic, but they’ll let you take charge to the best of baby’s ability. Nurse June  spent a lot of time staring at us while we were in the NICU. “Well what do you want me to do? They’re your kids – you deal with them.” (I’d like to take this moment to reiterate how much we love Nurse June. Even if she did collude with the muppets to save all poopy blowouts for our arrival.)

Even though your baby is premature and lives in their own personal condo at the moment, you are now a parent. Just as if you had brought home a full-term baby, it is time to jump right in and start parenting. It may be a bit more challenging for you but you have to jump in and just do it.

What is entirely within your control, is to take good care of yourself. A sick mommy or daddy will not be able to give their preemie the best love they deserve. Yes, it is heart-wrenching to walk out of that unit once you’ve experienced love at first sight. But a new mom needs to rest and take care of herself first, so she can heal quickly and concentrate on her baby. When you are well rested and healthy, you’ll have every opportunity to participate in your infants care.

I was so eager to be there for the muppets, I practically passed out – sprawled flat across the NICU floor – because I couldn’t be bothered with the fact that six weeks of strict bedrest and a c-section does not one flight-of-foot make. The blood meant for my brain diverted itself to a more convenient horizontal layout. Gravity, thou art a cruel mistress…

By far, the biggest challenge you will face is the loss of control of the whole situation. No matter how much you are involved in your baby’s care, no matter how much time you spend in the NICU or how much juju you have to spare, you will have no control over your baby’s condition. Zero, zip, zilch. Trust me and the nurses I spoke with about this missive, if they could control anything health related, tiny babies would never be sick and NICU nurses would spend their days restocking burp clothes in the hospital store room. (Ok, I made that last part up. They’d probably all find different jobs.)

It takes nine months for a baby to grow up big and strong in their mommy’s tummy. (Well, it’s supposed to anyway.) So it is reasonable that it will take time for your baby to reach ideal healthiness outside of the womb. The general timeline you can expect to hear is that your child will be ready to go home around your actual due date. Patience and understanding is a big part of being a preemie parent. Clearly, this was an area I did not excel at. (Breathe damnit!)

Now for the hard part. As much as we all want to believe our little miracles are merely a “feeder and grower,” chilling with some NICU nurse new friends to get a bit bigger and go home, some little ones are sick. Sick babies means wires. Wires means procedures. Procedures means panicked parents.

The medical staff is not alienating you, nor plotting against you, when they ask you to step away from the unit so they can work on your child. Our nurses have assured me they do not enjoy poking babies with IVs the width of sewing thread, or drawing blood of which they have precious little. But they do it because it needs to be done for your little one’s ultimate homecoming.

And it’s not generally ideal to have a parent already on the verge of a nervous breakdown hovering (or more likely, hyperventilating) over their shoulder. One, it’s going to be a giant pain in their tushy if they have to extricate themselves from a sterile environment to deal with fainting mommies and daddies. Literally. These nurses deal with tiny patients. Mommies and daddies are giants. Two, procedures don’t leave warm fuzzy memories, which then rapidly ratchets up the guilt quotient. “Procedures” in general are icky. When was the last time your doctor called you and you announced to the world at large, “Goody! I get a procedure today!”

NICU nurses chose their profession. They fall in love with our miracles. The cherish our angels and stay by their side through the long road ahead – for baby and parents. They worry about them on their days off. They will call the unit, “Did they finally poop on their own?” “Did they eat all their milk via the nipple or are they still gavaged?” Each preemie milestone is celebrated, just as Mom and Dad rejoice.

NICU nurses become family. The muppets nurses’ still follow their progress (God Bless social media) and they will be beside them next month, celebrating a successful first year.

One final word from the NICU nurses. The Internet is a fabulous tool. It makes researching info on anything a cinch. But learning the definition of a tool, condition or disease is only part of the education (even when the Internet provides seemingly perfect results – like this blog). The answers are never black and white. Every child is unique.

New and expecting parents – come check out the Silicon Valley Gemini Crickets panel discussion on this topic tomorrow night. Turns out I was a day early… And for providing all of this wonderful insight, I would like to extend my deepest thanks to our extended family of nurses manning the jungle in the Santa Clara Kaiser Hospital Neo-Natal Intensive Care Unit.