NICU life, what you can do to help a NICU family.

Know someone with a child in the NICU? Here's a few ideas on how to help.

Buy them gas cards, restaurant giftcards, or a little cash to get food at the cafeteria or snacks they can store. (Snacks would've been the last option for us as there was no food allowed in the rooms).

Cook them a meal and go out of your way to deliver it hot and ready-to-eat on their schedule. By the time parents might get home at night, there is no time to prepare or even cook a freezer meal, but they will most likely be hungry!

Babysit the other sibling(s). ALL DAY.

Offer house cleaning services.

Run errands for them.

Offer to do their laundry.

Buy them extra cell phone minutes, depending on their plan. 

Find out if they want visitors and visit them (but only if you are completely healthy). See the baby if they invite you but not as a spectacle sport. Then visit again.

Ask how they are really doing and be prepared to listen. Every day, sometimes moment to moment is different - they might've just gotten some disappointing news, they might be processing some new information, they might need to cry, or vent, or even talk about something other than NICU life! It all depends on the day. Or the hour.

Please:
Don't bring flowers.
Don't look at them sideways if you just washed your hands for 3 minutes and they want you to use hand sanitizer.
Don't remind them to take care of themselves. Most likely they've already been told this (several times) but it's an impossible thing to choose between yourself and your child at this point. Let them do what they need to do.
Don't be offended if they need something you can't offer - don't push, but let them know how to get ahold of you and what you are willing to do.

And after they come home? Offer to clean their house or do their laundry or bring them a meal! It's just like bringing any new baby home from the hospital - it's just as or more overwhelming. Feel like a lot? It is. It's a long road - walk with them down it.

Are you a NICU nurse? Here are a few do's and don'ts from a NICU mama:

Always ask if they want to be involved in baby care as soon as possible. Most likely they will jump at the chance. Ask every. single. time you can. Every diaper change. EVERY ONE.

Don't do anything unnecessary without the parents' consent (read: medically unnecessary, obviously). Parents have already had to grieve so much. Please don't snatch away the small firsts they can have. Unless you discuss otherwise, let them do the first bottle, dress their babe in the first "real" clothing, etc. This is unimaginably important no matter how normal, every day it may feel to you.

Ask if they have questions. Answer questions as thoroughly as you can. Don't give them more anxiety but don't sugar coat your answers either. If you don't have an answer, don't make an educated guess. Get the NP or ask the neonatologist. If they ask the same thing again, explain it again. It's an overwhelming amount of information on very little sleep and high emotion. Soon enough they will be the expert on their child.

Respect the parents' wishes. Follow them as closely as possible. If you aren't sure and need to know, call them.

Treat them like real people; don't talk down to them.

Night nurses, make sure they know they can contact you at any time! Encourage them to do so.

Help them advocate for themselves and their child. Be honest but be on their team.


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Did I miss anything? Feel free to share your experience in the comments!

NICU life, lessons from the NICU

Six months out from our NICU stay, we are in a good place. Sleep deprived, but in a good place. And after thinking about it, I've decided to share some lessons we learned from the NICU. (To read about our experience there in 2015, read Part I, Part 2, Part 3).


A NICU stay, no matter how long, is hard. But the longer it is, the harder it gets.

When I was first there, a couple of parents were SOOOO ready to take their (first) child home. I would smile knowingly and behind their backs chuckle at them. "If only they knew. It's just as hard at home, but you have no help." Which is true. And not true. It's difficult when you finally get a baby home - finding your new normal again, figuring life out. But there was a point (maybe 6 weeks in?) where I went from "He's better off here" to GET US THE HECK OUT OF HERE almost overnight. Then I understood where those parents were coming from. And, I humbly admitted to myself that I was wrong. (Happens to the best of us.)

If there is a chance baby might come early, have a name picked out early. There was so much pressure to name our little one!

Holding your preemie guy for the first time is SO good.




















There is not enough to be said for how much skin-to-skin time benefits everyone involved!

No doctor is perfect. You are the one who knows your child best, if you are there, you make the decisions with them.

Doctors don't always agree with each other! There is much, much less agreement in the medical community than I thought. You can always ask for another opinion.

If at first your pediatrician doesn't satisfy, try another one.

If you want to exclusively breastfeed your preemie, it is possible. (Maybe not for everyone, no judgement! But it was my number one desire and it happened!) The lactation consultants were some of my favorite people. Not only did they support my desire to breastfeed but they also supported me in other decisions. They were my biggest help! And because there were less of them in rotation, I saw them more often and got to know them more readily. They were amazing, they answered a million and a half questions, and were my biggest support.

Did I say already that I love lactation consultants?!

NICU life: Part 3

(See Part 1 and Part 2)

But we prevailed. Between countless trips to the hospital and back, playdates, prayers, grandparents' help, giftcards, hugs, texts, phone calls... we made it. We were all a little worse for the wear, but we did it.

We had lots of highs and lows during our stay.

Getting to hold him was the highlight of the first week. Then we picked out and finally agreed on a good name! He was in the incubator for a very long month until he was transferred to the crib - crib day was awesome! When you can freely pick up your baby and change his diapers free of the plastic box? SO good. One still has to fight the accursed wires ... but still good.

I loved putting "real" clothing on him the first time although the aforementioned wires made those cute pants a little difficult. (Preemie size clothing only works well if your child isn't in the hospital.) After the third head ultrasound, when he was deemed brain bleed free - I could've jumped for joy! That was a good NICU day.

One of the best? Watching this girl hold her baby brother for the first time. She waited THIRTY days! And proceeded to surprise us by snuggling with him for an entire hour.

BUT, I hated leaving my girl every day. It's really hard to have a four year old in the NICU when we needed to be quiet or when she needed to go to the bathroom during a pumping/feeding/holding session. It was hard to stay the night (again, leaving home and getting poor sleep) to try to nurse and just have Little Mister decide he was tooooo tiiiired to even attempt a latch.

Days filled with non-medically trained parents (us) trying to figure out what was best for our little guy because even all the "experts" have vastly differing opinions. Fighting with his new pediatrician - whom I thought was a good choice for us, and instead found that this was very wrong. Experiencing extreme reflux that had I not known what it was I might've thought he was seizing. It was so scary. Furious at a nurse for not even realizing a spell had happened until it *might* have been too late.

And that's just a few snippets of our experience. I can't even begin to explain the emotional rollercoaster the NICU affords. It is an experience like no other. We were grateful for his care and his subsequent health but in no way did I like being there.

The best day overall? Day 64. Going home day!!

NICU life, part 2

(Part I here)

He was tiny and beautiful when they pulled him away from me in the delivery room, but the first time I saw him in the NICU all I could do was sob and say I was sorry. And I was. From the deepest part of me, I was so sorry. My body had failed him and what should have been effortless to him in the next 8-10 weeks was now the fight of his life.

He was still beautiful. And surprisingly strong looking.

But so alone and vulnerable.

Come to find out, the percentage of water than makes up a baby's body in gestation gradually decreases by 40 weeks. So at 30 weeks there was water in his body to lose. In a matter of just a few hours I came back up to the NICU room to find my strong looking boy had shrunk to a preemie. He was even more impossibly tiny!

Over the next hours and days we became familiar with many new medical terms. CPAP, vent, desat, surfactant, PDA, apnea, brady, bili, brain bleed, residual, etc. At first it was overwhelming. Running on very little sleep does not help one's brain work any better. But after tons of questions and lots of patient answers we soon were experts.

For several days we couldn't see his face because of the CPAP machine and the mask protecting his eyes from the blue bili light. We were only supposed to touch him with firm but gentle pressure. No stroking his crazy soft skin or holding him.

Everything in me protested this. No matter how thankful I was for his life or for his care, it still felt so wrong.

Having your newborn in a plastic box hooked up to a million wires is so unnatural. It was impossible to be with him 24/7 so leaving him at all felt wrong. I climbed into the car to go home for the first time and burst out crying. Oddly enough, I didn't want him with us in his current state but he should've been safe and warm inside me not an incubator. Instead, I was empty.

Having his life decided and dictated by someone other than us as his parents was difficult to swallow. Strangers, albeit with knowledge and even care, were making major decisions for him. If we weren't there, we wouldn't be involved!

And one of the hardest parts was having another child at home. No matter what I did, I was away from one child. It's something no mother wants - to feel like you have to choose one child over another. My daughter is not clingy in general but we struggled so much those 9 weeks. Going from mommy home all the time to just a couple hours a day was very difficult for her. And for me! I wanted to be there for both of them and I just couldn't. It was an impossible task. And it was truly awful.

(Part 3 here)

NICU life, Part I

It's a sudden thing, pre-term labor. At least for me it is. I'd spent eleven long weeks on bedrest in 2010 for preterm labor only to be induced 5 weeks after that because I didn't actually go into active labor! I'd had a few contractions this second time around and I even went to the hospital once, but the day she put me on bedrest (at 30 weeks), I expected to be...

...on bedrest.


Even in my wildest dreams (even the hormone induced pregnancy kind - ifyouknowwhatImean) I never thought within a matter of hours we would be racing to the hospital in the wee hours of the morning only to find out that our son was indeed on the way and there was nothing we could do about it. Nothing, except push his tiny life into the world and face this unexpected and shocking reality.


Pre-term labor and NICU life is a beast, friends. You want to be happy that your son is alive and stable but the grief of a pregnancy ended too soon, a 3.5 pound child dependent on machines to care for him, and your body unable to keep giving him what he needed most is overwhelming. The dreams of your seconds old son being laid on your chest, nursing him immediately, and the normalcy of simply "rooming in" quickly disappear. What's left is you, alone, pumping every three hours wondering if you would get the call in time if something did go wrong upstairs and what exactly went wrong to get you there in the first place? I didn't sleep for two days straight - the adrenaline was just too powerful. So there was lots of time to think. Too much, in fact.

"Why is there a stranger changing my baby's diapers? It should be me."

 I wasn't there for his first bath or when his cord stump fell off.

We couldn't hold him and barely could touch him for fear of overstimulation.

Babies should be held and kissed. Their impossibly soft hands and feet caressed. Their newborn scent drank in deeply. But for us, there was nothing. Nothing except my wheezy Medela. My baby should've still been kicking inside me but instead his tiny lungs were working so hard to do what they shouldn't have had to.

It was the hot middle of summer. He wasn't due until fall.

(See Part 2 here.)