Navigating the NICU.

This guest post is from Tricia who blogs at Stream Of The Conscious and has twin boys aka the muppets who were born at 27 weeks gestation.

The little hummingbird was in the NICU for different reasons but when you, your family, and your child go through this experience, I feel like there’s an instant bond with others who have had children in the NICU.

While my husband and I had a less than desirable experience when our daughter was in the hospital because of many things, I told Tricia that it helps to know someone had a positve experience despite the circumstances she was under.

Reading her blog FAQ about her twins is an absolute must. It had me smiling and laughing the whole time. The muppets turned a year old at the end of May and Tricia wrote her sons a beautiful letter about the journey from the time they were born, through their stay in the NICU, and when they came home.

Q and A with Tricia.

Elle: If the zombie apocalypse happened tomorrow, which weapon would you want to have to fight these brain eaters?

A. a flame thrower.

B. an unlimited supply of ninja throwing stars.

C. a chainsaw.

D. a shoelace because you’re bad ass.

E. other and what would it be?

F. none of the above, I want to be a damn zombie!

Tricia: Is this a trick question? The answer is obviously A. Threaten me and my family and you’re going down in a fiery ball of defeat.

It will be like fireworks of victory. Unless…unless you’re actually a zombie trying to figure out what my methods of battle are. In which case the answer is B, Ninja Stars. Pay no attention to the bright orb hurling toward you…

Elle: If you could be stuck in an elevator with anyone, who would it be?

Tricia: This is cheesy but that’d be my husband. He’s figured out the magic trick of keeping me calm (a VERY impressive feat) and is handy enough to figure out how to MacGuyver us out of the stuck-y situation without letting us plummet to our death.

And yes, that’s instantly where my mind is going to go the second the elevator stops – even if we’re 3 feet off the ground floor.

Elle: If you could drop everything and go anywhere (real or fantasy) in the world, where would it be?

Tricia: Maui = Paradise. Perhaps with a stopover at See’s candy first.

Elle: Which would you rather win? An Oscar, a Grammy, or a Tony.

Tricia: That’s easy, Oscar. I’ve had my acceptance speech written since I was 7. I’d like to thank the Academy for recognizing how fun it would be to translate my novel into a screenplay and letting me be the head writer.

I thank all of you for this Best Screenplay Adaptation award. Look boys! You have a brother!

Elle: A favorite non-mommy activity?

Tricia: Sleep. Oh doesn’t that just sound divine right now?

Elle: What’s a favorite book that you like to read to your kids?

Tricia: “The Very Hungry Caterpillar” was our theme/NICU mission statement. I would read that book to them daily, showing them the brightly colored pages through the plastic walls of their isolettes.

Their favorite part of the story were the depictions of food the little caterpillar ate his way through. As they got bigger, I’d tickled their tummies when we came to the page stating that the little caterpillar was now a big fat caterpillar!

Elle: What kid’s cartoon or character makes you want to bang your head against a spike?

Tricia: This may be considered blasphemy but I’ve gotta go with Elmo. It’s that song. “Elmo’s Song. LaLaLa” (Repeat ad infinitum…)

You know what, I’d like to change my answer to question No. 1 again. I’m going to lock the zombies in a contained room and repeatedly play “Elmo’ss Song.” I give them a max of seven minutes before they decide dead is the way to go (as opposed to undead).

*Elle’s note….I’ve heard that song 20 billion times and the first few times were cute but now I’d like to take that song and unleash a bunch of wild dogs on it so they’d rip it to pieces and nobody would ever have to hear that song again.

 ~~~

In Tricia’s words.

I write stuff for a living. But I never thought I’d end up a mommy blogger. A world-famous Newbery Medal recipient, sure – but it instead appears my writing talents have headed down the road less traveled.

It was always my dream to be a writer. By day, I’m a corporate writer; by night, I’m working on the next Great American Novel.

My twin boys were born at 27 weeks gestation weighing 2 pounds. I held Caden in my arms for no more than 10 seconds after his birth. I watched Logan get wheeled out of the operating room wrought with tubes and encased in a plastic incubator.

They were born 12 weeks too soon. And then I passed out.

I didn’t get to meet my muppets the day they were born. I spent hours shivering uncontrollably in a recovery room – demanding water from a nurse who tried my patience to its last nerve by insisting on following medical protocol instead of catering to my thirsty whims.

Five hours after they were born, my husband was indoctrinated into life as a NICU parent. He was crying when he came back, but he reported they were doing amazingly well. There were so many wires…

Today they’re 14 months old, living up to their nicknames of Search and Destroy. And I write about them.

~~~

Doing Time: Navigating the NICU

*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. I could give my perspective adnauseam – 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 stillelicits 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. Sometimes a little one is just too fragile and they may not be able to tolerate such strenuous stimulation.

Neither your child nor the nurses intentionally try 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? Their 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 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. Okay, 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 new NICU friends who want the same for their babies which is for them to get bigger and go home, some little ones are sick. Sick babies means wires. Wires means procedures. Procedures mean 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 generally not 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 raises 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. They 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 thenipple 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.

~If you would like to write a guest post about anything you want, whether or not you have a blog, please email me at elle dot mommyhood at gmail dot com.

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4 Responses to Navigating the NICU.

  1. Jamie August 18, 2011 at 07:02 #

    That was a beautifully written piece. I too have twins, but I was lucky enough that they just needed extra hospital time for monitoring and were never placed in the NICU. I couldn’t begin to imagine the hardships NICU parents have had to go through. Congrats on your first successful year and many more to come!

  2. Cheryl M. August 19, 2011 at 10:32 #

    Happy first year! I can’t possibly begin to imagine what it must be like having a baby in the NICU. Most nurses in general are amazing people, but the ones who work in the NICU are of a special breed. I bet if you squint, you can see their wings and halo!

  3. Emily Calle August 21, 2011 at 12:15 #

    I’m with you: my second baby was in the NICU (not premature — he was full term, born on his due date, even! — but he had meconium aspiration at birth and then vomiting issues and then cardiac issues and then, and then, and then . . . ) I think that the NICU nurses are among the most amazing, selfless, loving, kind people on the planet.

    In order to walk from my recovery room to the NICU, I had to walk past the “regular” nursery, and I cried every time I saw some new parents staring in at their new baby, unaware of how lucky they were (and I knew it, because I’d been blissfully unaware with my first, too).

    I do think there’s an instant bond among us who have had babies in the NICU. It is an exercise in letting go an recognizing your powerlessness. My favorite quote I read, on a poster in the Mom’s room in the NICU, was, “Guilt is a result of convincing ourselves we have control over something we don’t.” That helped me a lot.

    Now, almost 11 months later, it’s hard to believe how quickly the experience recedes from reality to memory. Thanks for sharing your experience.

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  1. Like a *REAL* Writer | Stream of the Conscious - August 17, 2011

    […] I am a featured guest blogger on This is Mommyhood. As Elle (of the Mommyhood) states, “there’s an instant bond with others who have had children […]

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