Now that Peanut is six months old, I have been finding it a little easier to think back on our NICU journey. (Not easy, per se, but easier. I don’t know if it will ever be easy or positive for me.) While we were in the trenches, I found myself googling “NICU survival guide” almost every day, searching hungrily for tips that could make my experience even a little less painful. At the time, I thought that I might write a post about the things that got me through the NICU experience, sometime when the memories weren’t quite so raw. So, if you ever find yourself in the NICU – although I sincerely hope you don’t – here is some advice, one NICU parent to another, about how to cope.
1. Call. Call the NICU anytime, day or night, whenever you’re not there and you want an update on your baby. You will not be making a nuisance of yourself. You’re the mom (or dad). It’s their job to update you on your kid, and they really, sincerely do not mind. There’s someone there 24 hours per day, and there’s always going to be a nurse on duty who is responsible for your baby and for answering your questions. So even if it’s 3:00 a.m. and you just want to know if the baby pooped since you left, call. They don’t mind.
2. Be vocal about your needs. If your family or friends ask you how you can help, tell them. And if someone does or says something that bugs you, tell them that. For example, one thing that drove me nuts when we were in the NICU was the phrase, “Just take it one day at a time.” No. I don’t want to take it one day at a time. My current reality is so terrible that if I just focus on today, I’ll lose my shizz. I need to think long term. I need to think about Peanut coming home, and her first walk in the stroller that’s ready and waiting for her, and about her first Christmas and her first vacation and about her playing in her room as a toddler. I need to hope, because I have nothing else right now, and what you are saying to me is that I should stop focusing on the good things ahead and just think about the crummy, depressing situation I’m in right now. So when people told me to take things “one day at a time,” I said, politely but firmly, “That phrase is really not comforting to me. Please don’t repeat it.” (However, everyone is different. Hubby felt that he had to take things one day at a time. His way of coping was to never look beyond the next feeding, the next diaper change. And that’s okay too, because that’s what he needed.) Don’t be afraid that people will judge you or think you’re rude for telling them what helps or comforts you and what doesn’t. You’re going through what will probably be the most challenging experience of your life, and your family and true friends will understand.
3. Be an advocate for your child. Hubby and I are not confrontational people (funny that we’re two lawyers, huh?) and we were generally happy with our NICU, but we did run into problems from time to time. Some of the problems were big, and some were small, but no matter what, if there was something we were unhappy about we were not shy about voicing our concerns to the Charge Nurse, the Nurse Manager or our baby’s doctor. While we might not have complained on our own behalf, when it came to our kid we expected perfection from the NICU, and when we were not satisfied we insisted that they make things right. And I know we weren’t the only parents who were willing to complain if the care didn’t meet their standards. We didn’t care if we were “those parents” or if we annoyed the NICU administration. Demanding perfection from the NICU was one way we could help our baby, and as her parents we were her voice. In the end, no one is going to advocate for your baby the way you will.
4. Make a statement of your faith in your baby. I was lucky in that the vast majority of the people in my life were very positive, and if they had any doubts that Peanut would come home whole and healthy, they didn’t express them to me. But I did encounter the occasional doubter, and while I tried my best to ignore the naysayers, I found it helped me to make a statement of my own convictions that Peanut would be a healthy, normal kid. For me, that took the shape of a sweater. I got out an old pattern (a baby sweater I’d knitted for a friend’s little girl back in 2007) and lost myself in cables and button bands and increases and decreases. With each stitch I knit, I thought about all of my hopes and dreams for my little girl. I poured all of my love for my baby, my frustration with the NICU process, my anger at the few people in my life who didn’t seem to believe as hard as I did, and my conviction that Peanut would come home, into that little sweater. And she did come home – in fact, she came home before the sweater was done. I kept knitting on it all through the fall, and I gave it to her for Christmas as a special gift from Mommy. (Starting a tradition, I hope, of knitting her a sweater every Christmas.) It was my way of saying to Peanut, “I believe in you.”
5. Do something for you. The nurses and doctors and our parents encouraged hubby and me to take a little time “off” from the NICU – leave early, go to dinner, be a couple, etc. We didn’t like leaving early, but we did try to go out once or twice while Peanut was in the NICU, and keep up with our own interests, which was easier. When Peanut was first born, I found it hard to concentrate on a book. I was just too frazzled (and hormonal) to focus on anything other than the NICU, and wonder whether we’d be having a good day or a bad day. But my emotional state improved noticably when I went back to reading. I’ve always read through the tough times,. and the NICU was no exception. I carted a book with me everywhere I went and read in the car on the way to and from the hospital, in the pump room, by Peanut’s bedside if I wasn’t busy taking care of her, and in the evenings at home. I’ve always loved to escape via a good book, and reading was a huge part of what got me through.
6. Stay healthy. Eat well, and do what exercise you can with your doctor’s approval (I had a C-section, so for me that meant nothing more than light walking for basically all of Peanut’s NICU stay – but it did make me feel better to just move my legs a little, once I was past the pain of surgery). And do whatever you need to do to avoid getting sick! It will be hard to get sick with all the scrubbing you’re doing, but it’s not impossible, and the last thing you need is to be quarantined and unable to see your baby for a few days. Plus, you’ll feel like you’re doing something by googling “natural cold prevention” and buying all the shiitake mushrooms and oranges in the grocery store. So chow down on that vitamin C like it’s your job.
7. Hang on tight. Anyone who has been through the NICU fire will tell you that it’s a roller coaster. You’ll be up on top of a mountain, and you’ll be down so deep you’ll feel like you have the bends. Know that those highs are coming, and so are the lows, and you’re not going to be on an even emotional keel for awhile yet. Hang on tight to your partner, or your mom, or whoever you lean on for support. You’re going to need them for awhile. And then one day, things will get better. They really will get better.
8. Remember: it doesn’t last forever. My seven weeks in the NICU felt like an eternity. In my haze of new mom hormones, I was convinced that Peanut would be there at least until her freshman year at Cornell. And I was also convinced that the doctors and nurses were trying to steal my baby. (They weren’t, but that discharge sure did seem slow in coming.) Yes, it’s completely irrational, but there will come a time when you’ll think “This is going to last forever, and we’re never getting out of here, and THEY’RE DOING IT ON PURPOSE.” It’s okay to feel that way, and it’s okay to be angry that you’re in the NICU to begin with (goodness knows I was; I was furious). But I promise: they’re not actually trying to steal your baby; they’re trying to get your baby home. And they will.
9. Build a NICU community. Hubby and I were lucky to have the support of several NICU alums, including Amal, who gave virtual hugs and encouragement, a sorority sister who sent diapers and shared her own NICU journey, and my boss’s wife, who came to visit us at the NICU, shared her own story and let me cry on her shoulder. And then there were the moms I met in the pump room. We shared delivery horror stories, joked about how we knew so many medical terms that we could probably pass as nurses, and planned playdates for the hazy future when our kids would be healthy and home. It wasn’t easy for me to make those friends – I’m not someone who connects easily to new people, and I was stressed out, on edge, and hidden behind a lot of walls. But there were moms who reached out to me despite my perma-scowl, and now we share a bond that I could never have imagined. We exchange pictures of our little ones and squeal over the babies’ adorable traits, and it’s even more special because we each know what the other went through to get to this point. And finally, there is one special nurse who I still email. She took care of our whole family when Peanut was at her most vulnerable, and she’ll be a special part of Peanut’s life forever.
10. Take care of the baby. Most NICUs consider parents to be part of the care team, and they’ll let you do basic care tasks, like changing the baby’s diaper and taking her temperature. Our NICU even let me bathe Peanut. The nurses were always happy to take a moment to teach me how to do something, and they LOVE parents who want to help, because it takes a little bit of work off of their very full plates. But taking care of the baby doesn’t have to stop when you walk out of the NICU doors at night. Every evening, when we got home, hubby and I would ask each other, “What can we do to help Peanut tonight?” (We’d use her real name, though.) Every night, we tried to do something for her – it might take the shape of knitting her sweater (see #4), working on her nursery, doing her laundry, writing thank you notes, or something else, but it made us feel good to know that we were doing things for Peanut even when we weren’t with her.
11. Kangaroo. If your NICU supports Kangaroo Care, do it as much as possible. It’s good for the baby, encourages growth, and it helps Mom (or Dad) too. We did so much Kangaroo Care I considered changing Peanut’s name to Joey.
12. Laugh. I know, you’re going through a crummy situation right now. Believe me, I was in as bad of an emotional state as anyone else – but even I found things to laugh at. I laughed at the baby when she did funny things (for instance, she used to hold her hands up hear her face and spread her fingers; we called it “daisy pose” – her little fingers were like petals – and we giggled at it and even imitated it) or made silly facial expressions, which she did a LOT – Peanut has always been an expressive kid. And I read a funny book – Freddy and Fredericka had me in stitches – and when we really needed to check out, we’d watch old episodes of “Friends” in the evening and chuckle the entire time at the characters’ antics. Laughing felt good, and it let me forget – just for a moment – about all the stress.
13. Celebrate. You had a baby! A beautiful, sweet, wonderful little miracle baby. It’s easy to get caught up in medical charts and pumping and tracking weight gain and all that clinical stuff, but don’t forget: you deserve to celebrate your baby just as much as the mom who gave birth to a healthy baby at term and got to leave the hospital, kid in tow, the next day. Your baby is still a baby. She’s still here, and special, and worthy of celebration. So don’t let people focus you on the bad news. Hubby and I called our parents every day on our way home from the NICU and gave them the scoop on our day, and we took tons of pictures, and we ate up every compliment we got on our gorgeous little girl. She might be in the NICU, but she’s still a new baby who is worthy of all kinds of joy. You’ll find that the people who really love you, and your baby, will look past the wires and tubes and see the beautiful little life you’ve created. So go ahead, Mom and Dad. You made a gorgeous, special, unique baby. Brag.
If you’ve been in the NICU and you’re out of it now, fist bumps to you. What got you through? If you’re walking through the fire right now, you have my love and support and all the virtual hugs you need. Feel free to ask me any questions, or just vent if you want – I’ll always listen and support a fellow NICU parent.