Advice for Families in the NICU - from People Who Have Been There

A year ago, we were a week into our three week NICU stay and I felt like we finally had things figured out and had settled into a decent routine. I remember every day in the hospital thinking about the things I wish I'd known going into our stay that would have made that first week just a little bit easier. In the year since we left the hospital with our little one, I've had multiple opportunities to share our story with other families facing a NICU stay of their own. I can honestly say that those few weeks of our lives were some of the hardest, sweetest, most emotional and most cherished that we've ever been through. I miss our time in the NICU every day and wanted to find a way to share little bits of advice to help other families feel the same way about their experience as well.

September is NICU Awareness Month, a month designed to inspire hope and to honor families who are currently in this situation as well as the health care professionals caring for their little ones. I wanted to do something to give back this year, because our time in the NICU was trial but it was such a huge blessing at the same time. The idea for this post came because I wanted to offer hope, advice and encouragement to couples going through that trying time. I wanted a way to provide them with support and hopefully make that time just a little bit easier. I asked other parents who have experienced a NICU stay, as well as nurses who work there, to share their story and offer a few pieces of advice.

I hope that other families facing a NICU stay can find hope, peace, and joy in the midst of the trial!

Advice for parents with babies in the NICU. Great tips from parents, families and nurses who have been there.

Parents of NICU Miracles

Jacque - Mom of twin boys born at 30 weeks and 4 days gestation. 34 day NICU stay.

On my birthday this past June, I woke up to find my water had broken at 30 weeks and 4 days gestation. In a panic, my husband and I rushed to the hospital and were told I wouldn’t be leaving the hospital. The hope was to stop my labor from progressing and to keep me pregnant for as long as possible, but my baby boys were ready to enter this world on their own terms. They were born two days later and spent 34 days in the NICU. I can’t tell you how grateful we are for the medical technology and personnel that saved our boys’ lives. Though the NICU experience was difficult, it’s one I’m proud to have lived through.

For those of you currently living the life of a NICU parent, I would like to offer three pieces of advice:

Visit your children every day and hold them if you can, but make sure you go home and sleep. A LOT. Your children are being well taken care of and you need to make sure you’re doing everything you can to take care of yourself. I know that’s easier said than done, but it’s a must.

Make sure to have professional pictures taken. Though this is a difficult experience, I promise you’ll want to look back and remember the time you spent there, as well as the tiny miracles that happened every day.

Try not to be too hard on yourself. Live in the moment and be grateful for each day. Your little ones are strong and have so much fight in them. Have faith in the process and know that it does get better. I promise you’ll survive and come out the other side stronger than you’ve ever been before."

Amberly - Mom of baby girl Emmy born at 32 weeks gestation. 21 day NICU stay.

You can read our baby girl's birth story here. When my water broke, I was in a panic. We weren't ready for our baby to come yet, we were supposed to have eight more weeks! The three weeks that we spent in the Special Care Nursery (NICU equivalent at our hospital), were full of challenges and tender mercies. The months that followed, keeping our baby home from social events and public places was difficult, but we knew that it was important for keeping her healthy. This past week our baby girl celebrated her first birthday. As those NICU posts from last year have been popping up in my Facebook memories feed. I have been looking back on those moments fondly, remembering all of the things that time taught us.

Focus on what's most important. In those three weeks that we were in the NICU, there were three things that mattered most, my husband, my toddler and my baby girl. It's ok to say no to everything else! Nobody will question how you spend your time, so make room for the people that really matter. My husband and I were constantly working to balance our time in the way that our little family needed.

Take time for yourself. This one was the most important thing, but it was so hard to do! I felt guilty that I wasn't able to give my all to each member of our family all at the same time. I was being pulled in three directions, but I knew that I needed to take some time for myself as well because if I didn't, I wouldn't be able to be the wife and mom that I wanted to be. The nurses were great to encourage me and let me know that it was ok and important to take time for myself. Every afternoon, after I sat with Emmy for a bit, I would go back to my room and take a little nap. After cares every night, I went home and got a full night's sleep in my own bed. After Joe spent time with Emmy every afternoon, I spent time eating dinner and talking with him. And every weekend, we made time for a date

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Take advantage of hospital resources. The hospital where we delivered had a lot of amazing resources for families of NICU babies. There was a room across the hall from the nursery where we could gather with our families, hang out with our toddler when he came to visit, eat dinner and take advantage of snacks and drinks. We also had a room of our own, one with a regular bed and a bathroom; It was a great space to escape and rest without having to be too far from our baby girl. The hospital had a parent support group once a week that was really nice. They fed us dinner and gave us the opportunity to talk with other parents in our same situation, who could relate to what we were going through. And one of my favorite things was the little goodie bag with a coloring book that they had for Bensen. It gave him something to do every time he came to visit and had a few resources to help us better explain to him what was going on. Ask the nurses who are caring for your child, what is available for your family to help make your situation a little bit easier.

Don't be afraid to ask for and accept for help. One of the biggest things that our time in the NICU taught me was how to accept help from others. It took a few days, but I finally realized that when people offered to help, they genuinely wanted to help. And I also realized that there were a lot of things people didn't know that we needed and couldn't help with unless we told them that we needed it. Not only did our family take care of our toddler when we couldn't be with him, they brought homemade meals to the hospital, cleaned our house, did the laundry, and even made sure that a few car repairs got done while I was focusing on my little ones. I'm still fairly independent, but I am better able to ask for help when I need it.

Trust the nurses but don't be afraid to ask questions. We had some of the most amazing women taking care of our little Emmy and we are forever in debt to them for the care that they provided. From the minute we checked into the hospital, they were there letting us know what to expect and doing everything that they could to help lighten our burden. Those nurses cried with us, laughed with us and celebrated with us. One nurse spent half an hour reading through the thick packet of information they gave us and explaining each thing to me so that I could focus on snuggling my baby. All of the nurses were willing to take my calls when I wasn't at the hospital, no matter the hour, to give me an update on our baby girl's status. Whenever Joe and I had questions or concerns, they were addressed, even if other nurses had to be brought into the situation to consult. They were all there to make sure that our baby was given the best care and that we were able to go home as soon as our little girl was healthy enough.

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Alisa Devins Young - Mom of triplet girls born at 32 weeks gestation.

I was pregnant with triplets due to conceiving via IVF after struggling with infertility for 10 years. At 30 weeks along, I began having contractions and was flown to the nearest NICU (2.5 hours away), where I was given medicines to help stop labor as well as speed along my babies' development. At 32 weeks, I gave birth via C-section to 3 beautiful baby girls named Bailey, Brittany, and Brandi.

If possible, prepare yourself for the NICU stay in advance. I knew throughout my pregnancy that my babies would be born early, so I had the opportunity to visit the NICU before the girls were born. It helped mentally prepare me to see my own babies in the incubators and to see how tiny they would be. I recommend every family facing a potential NICU stay tour the NICU in advance as well as mentally prepare for the emotional journey ahead.

The nurses will be like family. At the time my girls were born, the nearest NICU was 2.5 hours away from where I lived. I couldn't afford to stay in the big city with my babies, and after I was dismissed from the hospital, my babies had to stay an additional 6 weeks. I could only afford to drive up to see them once a week, so the nurses were instrumental in helping to care for my babies. They loved them as if they were their own. 25 years later, I can still remember many of the NICU nurses names.

It's okay to be scared. I clung to my family and my faith throughout my girls' stay in the NICU. I could not have gotten through it otherwise.

25 years later, all of my girls are doing wonderfully! None of them face any health issues related to their early delivery. Below is a photo of my daughters then and now (with their husbands.) I don't have public social media, but my daughter Bailey frequently shares about her life as a triplet (or, as they say, with "built-in best friends") at BecomingBailey.com

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NICU Nurses aka Angels

Hillary - NICU Nurse

Make sure you take time for yourselves.  We, as nurses, are here not only here to help take care of your baby, but to make sure you can get the support, rest, and care you need.   Being a NICU parent is tough, don't be afraid to let us help and take over care for the night, day or whatever if you need a break.

Don't forget to be patient with your nurses, doctors and other medical staff.  Sometimes things move slowly in the hospital or plans change.  I know it can be so frustrating to have hopes and expectations altered, but trust me, we want you and your baby to progress!

I feel with you!  I can't speak for every NICU nurse, but I am nervous, scared, excited, tearful, and joyful about the progress and care of your baby.  For my personal experience, I will refer to the babies I care for as "my babies".  I know that they aren't really mine, but caring for your baby leads to a special bond and love.  Thanks for letting the nurses love your baby :)

Karlie - NICU Nurse

Plan on your baby being here tell their due date. Really just plan on it! There's no point in you having extra anxiety wanting your munchkin to learn to eat faster. Then if you kiddo proves us all wrong and goes home sooner we'll all celebrate. 

I genuinely care about your kiddo. Don't stress about not being here every minute, cause I got this! On the other hand I'm not you, and your baby knows the difference. So don't undervalue your presence and how much you help your little one get better.

And parents should know. These little tikes of their's have more strength and fight in one pinky than you can possibly imagine. (Even when they don't look like it)