As we near the end of our NICU stay, I find I’m needing to remind myself how to survive. Yes, it’s still a struggle, even here on day … 63? 64? Something like that.

In the early days, I had a lot of time to think, pray and focus. Now, I am on the move for most of the day – wake, pump, household stuff, drive, get updates, pump, visit, temperature, diaper, feed, pump, eat, pee, temperature, diaper, feed, pump, eat, pee …

You get the idea. What free time I do have is spent on a smidge of social interaction – just enough to keep me from going mute or at least only speaking in “Shhhh, shhhhh, shhhhh” language.

You’d think by now that survival would be on auto pilot, but I realized tonight that it isn’t.

We’re on a countdown. What happens near NICU graduation is the doctors review charts and count ahead the number of days that, should the baby have no issues, it is safe to go home. “Issues,” in our case mean apnea and bradycardia events and/or trouble maintaining a healthy level of oxygen saturation. If an event occurs, the countdown is reset to X amount of days from that event. Anything that happens while the baby is sleeping earns that baby another 7-8 days in the NICU. Situational events, such as events caused by choking, refluxing or pooping (it’s hard to poop and breathe!) are up for debate on how long the baby has to stay. I’ve heard anywhere from 2-5 days after an event.

So.

We had a date, and that date got moved. All three babies had events. We’ve had our new date for a few days now and have been event-free. Till today.

Callista had a brady after she ate this afternoon. I haven’t talked with a doctor to see how much this will set her back (if at all – the jury is completely out), so of course I jumped straight to worst-case-scenario thoughts.

Bad idea, Batman.

NICU survival rule No. 1: Don’t assume the possible worst.

Like my pal Van Wilder said, “Worrying is like a rocking chair. It gives you something to do, but it doesn’t get you anywhere.”

Worrying is always wasted energy, but that energy is even more valuable as a NICU parent.

It’s an exhausting gig that spreads you thin in ways you never imagined. If you’re a NICU parent of multiples, just go ahead and assume you’ll feel like ketchup your grandma added water to just so she could use every last drop in the bottle.

If you’re a new parent, you’re not only learning how to parent, but you’re also learning a buttload of medical jargon, treatment information, condition symptoms and prognoses, yada yada yada. Breastfeeding? You’re also learning to pump and feed your sick/premature baby.

You can see how much brain power a NICU parent needs, and all worrying does is eat away at that needed energy.

Worrying not only eats energy, it slows time. If you’re worrying, you’re in that damn rocking chair, watching the seconds tick. If you forget the what ifs and focus only on what’s going on right that second, days will fly by, and you’ll be celebrating 2-month birthdays before you know it.

Which leads me to NICU survival rule No. 2: Take NICU life one moment at a time.

We’re dealing in newborns. Their milestone “birthdays” are marked in weeks, while ours are marked in years. Their lives are concentrated down to a much smaller measurement than what we’re used to. Because of this, things change in the blink of an eye. They can go from so-so to great, from bad to worse or from bad to amazing so fast your head will spin.

If you’re going to be in there a while like we knew from the start, completely ignore the initial discharge goal. We were told to count on the babies’ due date, should all go well. We heard it, we knew it, but we told people when asked that coming home near their due date was a guesstimate, but it was completely up to the babies – could be sooner, could be later. We’ll worry about that as we get closer.

Now that we’re so super close, I’ve done a bad thing by letting myself forget rule No. 2. It’s wretchedly hard, though, to not look forward to a day only a few days away, especially when you’re in a frenzy at home trying to prepare for that day.

I’ve gotten so focused on Discharge Day and all the prep we’re doing on our end that I’ve written off all the things that can happen between now and then.

For instance, the babies had their 2-month vaccinations on Friday. All three refused to eat for at least one feeding. They were sluggish. They choked when they did eat. They ate only a fraction of their average. They acted as they had a few weeks ago, and I had visions of feeding tubes being replaced, oxygen cannulas going back on – basically regaining the equipment they had to match their behavior. Within a day, they bounced back, and my fretting was for nothing.

Babies are fickle, and they are going to change. They’re going to cycle through good and bad, and they’re going to jump ahead as well as fall behind. Predictions are impossible – even those predicting discharge – and, while it’s hard to do when predictions are needed for preparation, it’s best to ignore the predictions and take each moment as it comes.

Long before discharge was even up for prediction, reminding myself to live life in moments saved my sanity a number of times. Like I said, babies’ short lives to this present second are so few that each moment is huge. Many NICU parents know the moments (both long and short) in which you face a very real fear for your babies’ lives. The moment that determines life or death is often just as long as the moment that determines a clean or dirty diaper.

Hours after Callista’s bradycardia event, I broke down in tears. She may need to stay longer. We may have to split our family even more. Then I realized how much time is between now and then and just how many opportunities we have for more setbacks, from one or all three babies.

That thought simultaneously comforts me and sends me into panic mode.

It’s during those times that I need to remind myself of NICU survival rule No. 3: Time in the NICU may seem to last forever, but it will someday feel like a tiny blip on life’s radar.

One bad day won’t be as memorable as hundreds of good days. Time will heal stress. It may not heal pain, but it will numb it.

Speaking of time, my NICU survival rule No. 4: Celebrate each milestone.

NICU milestones can be the same as those shared by all parents – the first outfit, the first outfit in the next size up, the first bath, etc. – but there are many unique to NICU parents. For instance, celebrate eating. I cheered for the first 1 mL (1/30 oz.) of milk each baby tolerated, given to them by a tube that ran into their mouths and down to their stomachs. I celebrated just days ago when each baby ate, by bottle, a full 2 oz.

When I say “I celebrated,” I really mean it. I cheer, clap and give kisses for each tiny milestone. You burp? Kisses for you!

Likewise, NICU survival rule No. 5 is also important: Encourage after setbacks.

Setbacks aren’t only hard for NICU parents, but they’re visibly difficult on the babies. They’re often more tired. They can be fussy. They may not eat well, if they eat at all. They don’t like it any more than we bigger folks do. Soothing a baby after a setback and giving them a pep talk to encourage them to overcome it may not do much for the babies except provide a bit of comfort from Mommy and Daddy, but I know it does a lot to me. I’ve never been a coach, but I imagine coaches get a lot out of team pep talks just like team members do. It reassures me that we have a goal and that it’s OK to falter while working toward that goal. We aren’t going to give up. We’re just going to keep trying. And, no matter what, we love each other.

NICU survival rule No. 6: Write a bottom line and focus on it.

They’re alive and thriving.

That’s been my bottom line since day 7. It took me 7 days to get there, and it takes a breakdown sometimes to get back there, but my bottom line puts the hiccups – big and small – into perspective.

Early on, the fact that the babies were managing to continue living and thriving was HUGE. They’re older, stronger and much closer to being mature vs. premature, so living and thriving in their current condition isn’t as monumental as it once was.

Once upon a time, though, living was a miraculous accomplishment.

My trio were born three months early. I was ONE WEEK into my third trimester. Without today’s modern technology and knowledge as well as lots of good, old-fashioned prayer, I’d be a mother with empty arms.

The woulda-coulda-shoulda game gives great value to life in the NICU.

If they weren’t alive and thriving, you wouldn’t face today’s difficulties. You wouldn’t celebrate today’s milestones.

Acknowledge the difficulties, remember the bottom line, and focus on the moment.

NICU survival rule No. 7 had something to do with getting adequate rest, but I’m overtired and have begun to unravel my thought process.  I need to stop for a nap, but before I end this in a terribly abrupt manner, I’ll apologize if it makes no sense. I started writing to help myself focus on the big picture rather than just discharge day, and I decided to publish it just in case it helps someone else get over a hump.

Stay classy, Sandy Eggo. Over and out.

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37 Responses to NICU survival guide

  1. Jennifer Chabot says:

    That’s the spirit, Jenny! Stay strong & keep up the great work feeding, loving and pep talking those babies. You are a fabulous mother. I am a better person and mother for having spent time in the NICU- it puts life into perspective…I will forever focus on what really matters, and appreciate what I have. You are so right- this will all just be a blip on the radar screen. One you will never forget… Thank you for sharing your story.

  2. sarah says:

    I love this guide! Keep up the hard work, they will all be with you at home in no time!

    You are so strong!

  3. c says:

    You are one amazing person!!!! Keep it up girl!

  4. Megan says:

    You have an amazing amount of perspective for still being IN the NICU moment!

    With our son, I was glad on his birthdate to have a doctor tell me he would come home “around his due date” becuase I then understood we were talking about months in the NICU not weeks (I had no idea- I’d never been in a NICU before!) But as the due date drew nearer I was sorry I’d ever heard that because that date just made me sad all the time. As you say though- 16 months after leaving the NICU- it does seem more and more like a blip on the radar.

    Sorry to hear about Callista’s brady event. I’ll pray for the rest of their stays to be very very boring and non-EVENT-ful!

  5. Anne says:

    This is a great post. It is amazing what you have been doing since your trio was born!

  6. Michele says:

    So true- especially #3. We spent almost 9 weeks in the NICU and now… I have to read through my posts to really “Remember” it. I remember pieces but, at almost 17 months old, the kids are a lifetime away from it.

    Soon, yours will be too. :) Hugs

  7. Suz B says:

    Love the Van Wilder quote! So Jenny :) Sorry to hear about the small set back for Callista, but like you said, hopefully soon that will just be a blip on the radar. You & the babies are doing so awesome. I will be sure to keep yall in my prayers as the time to go home continues to draw near. Much love!

  8. Becca says:

    Awesome job Jenny. I’m sure there are a lot of people out there needing your support and will benefit from your help. You should write a book, you know in your infinite down time :)
    Post pics when you can of the cuties! We miss them!!!
    *HUGS*

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    • http://www./ says:

      We’ve arrived at the end of the line and I have what I need!

    • http://www./ says:

      I’m not easily impressed but you’ve done it with that posting.

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  9. ((((((())))))) You are so strong and I love your survival guide. Very great perspective.

    • Elida says:

      Most help articles on the web are inaccurate or inonehrect. Not this!

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    • http://www./ says:

      wow, die karte sehe ich jetzt erst! die ist ja suuuperschön… an blattgold habe ich mich bisher noch nicht getraut..danke dass du mir auf meinem blog folgst 😉

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  10. errr hit the button.. very great perspective to have especially when things are tough..

    • http://www./ says:

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  11. Amber says:

    Wow. You are a great mother. This is something every mom should read. I cannot imagine how hard it is to keep a positive attitude, but you are doing so good.

  12. Laura says:

    You are doing an amazing job and before you know it your 3 little peanuts will be home in your arms! And you are right “Babies are fickle, and they are going to change.” … this is something I’m learning with this pregnancy. Our Baby #2 is measuring behind and definately keeping us on our toes … one dr told us weeks ago that it probably wouldn’t continue to thrive, yet this little one has proven him wrong. Babies are strong and change from minute to minute. Never underestimate them.

  13. Mama Fisch says:

    You and your family are amazing. Do not let anyone tell you anything differently. Milestones are to be celebrated…big or small! Take care of yourself. Happy mama equals happy babies! It is the biggest lesson I learned the first time around! Hugs to you and if any of “us” can do anything ask. People would love to help!

  14. Gloria K. says:

    “Acknowledge the difficulties, remember the bottom line, and focus on the moment.” Jenny, you have no idea how powerful that statment is and how much I needed that reminder today.

    You are so incredibly strong! Those babies are so lucky to have a Mommy that–even through sleep deprivation, all the worries and concerns of the NICU experience, and planning for your eventual homecoming–can stay grounded and focused on what’s important. Way to keep things in perspective. Stay strong and know that you are truly exceptional.

  15. Regina says:

    Ah… were we really in the NICU for 3 and 3 1/2 months? A year later and it seems like a lifetime ago. Wyatt came home 20 days before his sister and looking back it was a God send. It gave us time to acclimate him to home life. Plus, due to the osteopenia (thanks TPN) we had a broken leg days after discharge. I don’t know what I would have done if both had been home. I hope you are soon introducing your bunch to their home.

  16. Lynn/PA says:

    I love this! I am so proud of you for thinking like this! The glass IS OVER half full and you will get through all of this – with the trio!

  17. Andrea says:

    I’ve been following your blog since before PB+J and I’m SO happy you guys are all home as a family of 5 now! Anyways I’m a 3rd year nursing student and we currently are covering a scenario of preterm infants and I just wanted to tell you your survival guide was extremely helpful for me and some of my peers. We don’t know what it’s like to be a parent of preterm babies in an NICU, and it was just awesome.

    So thank you for having such an awesome public blog that’s educating nurses of the future!

  18. Kathy B says:

    Wow! I knew you were a very special mom. I now know why. You are so eloquent. I am so proud of you and glad you are sharing this with other.

  19. Jennie says:

    Reading this I could have written it myself. Esther and William are almost 8 months old now and the stress does go away and even some of the pain becomes more bearable. It does as your babies grow bigger and stronger every day x

  20. Maddie&Frankie'sMom says:

    Thank you for this Frankie was on her last day of countdown event free and set to come home today and then last night it happened. I feel like a puppet. Your post gave me perspective and needed that for sure! Thanks

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