NICU Selfcare 101 by Amanda Knight by Jennifer Tracy-Inspire

selfcare 101 NICU

101

AMANDA KNIGHT

HI, I'M AMANDA

I see you, tired and scared NICU mom. I've been where you are. When our twin daughters came into this world three months too soon, we found ourselves in a scary, new world called the neonatal intensive care unit. Until that point, all I knew about a NICU is that it existed. I found myself trying to navigate the most terrifying time of my life with no knowledge and no real "mom support" from a community that knew what I was facing. I had the support of my amazing husband, but he was trying to navigate our hospital stay in his own way, too. It was tough. My daughters spent three and seven months in the hospital, almost all of them in the NICU.

SADIE'S PURPOSE

WWW.SADIESPURPOSE.ORG

I met Jennifer Tracy, almost two years ago inside of LinkedIn. She shared about a devastating time in her life. In 2004 she lost her husband and twin daughter in a horrific car crash. After we connected, I learned that her twins had twin to twin transfusion and were born 7 weeks early at 2lbs 13oz and 3lbs 10oz. They too were in the NICU and came home on oxygen. You'll learn more about both of our stories, but for now we both want you to know, we see you and we care. Our shared purpose is why we created M.O.M - Moms On a Mission. We are here to help. It is my hope that this short guide will help you find some support and peace. With love,

Amanda SADIE'S PURPOSE

WWW.SADIESPURPOSE.ORG

Table of

contents Using This Guide

Tip 1- Make time for hygiene

Tip 2- Get out of the room regularly

Tip 3- Eat a healthy diet

Tip 4- Accept help from others Tip 5- Know when to say no

Tip 6- Take advantage of resources

Tip 7- Continue doing things to relax

Using This Guide It’s every parent’s worst fear- finding themselves and their new baby in the neonatal intensive care unit (NICU). It’s scary and overwhelming. As a mother, you’re still trying to recover from pregnancy and childbirth. And as a father, you’re trying to support your partner through her recovery while simultaneously being there for your newborn baby. As a NICU veteran parent, I empathize with you. Please know that those feelings of guilt you’re experiencing, feeling like you need to be everywhere at once, are normal. You ARE doing enough! And while it is expected that you’re going to worry about your baby and want to be with him or her around the clock, it is vital that you take time to take care of yourself. But what can you do? When you feel like you don’t know which way is up, how on Earth are you supposed to go about self-care? That’s where we come in. In this guide, you will get self-care advice in easy-to-digest tips. One tip per day, you can get the guidance you need to care for yourself so that you can care for your baby.

WWW.SADIESPURPOSE.ORG

It’s about more than your own cleanliness and health, though. Your baby’s matters too. If you are neglecting your own hygiene, there’s a higher chance you may pass something along to your baby. This wouldn’t be good for an already fragile NICU baby.

NICU Self Care Tip 1

Being clean is vital to your health. Keeping your hands, body, and hair clean will help keep you in the best health possible. You need to be strong and healthy so you can be in the best position to care for your baby. And if you get sick and can’t visit the NICU, you will miss out on that time with your baby.

Make time for hygiene

Maybe the last thing you’re thinking about each day if your baby is sick is taking a shower. Or maybe you are so worried and sleepdeprived that you’ve lost track of the days. Either way, most NICU parents aren’t thinking about showers on a regular basis. But that doesn’t mean it isn’t important.

One of the best ways to ensure that you’re keeping up with your own hygiene is by putting yourself on a schedule. If you spend part of every day at home, simply shower while you’re there. But if you are spending all your time at the hospital, set a specific time of day. WWW.SADIESPURPOSE.ORG

I used to wake up between 5:00 and 6:00 A.M. when I was in the NICU with my daughter. This was the time of day that the medical team usually made their rounds, and I wanted to be awake so I could be informed of the latest on her condition and care and ask any questions I had. Once they finished in her room and left, I would take a quick shower. It was a way to start the day off right. Just that one seemingly simple step really did put me on a better path each day. I felt recharged and ready to handle whatever the hospital threw at us that day. Once you set that time that works best for you, stick to it! If I ever decided to skip that morning shower, telling myself “I’ll do it later,” I didn’t. I would end up busy with my girls and by evening I was exhausted and just wanted to sleep. At Sadie’s Purpose, we want parents to know that not only is it necessary for a parent’s physical health to maintain their personal hygiene, but it’s also great for mental health. Just ten minutes alone in a shower can give you time to gather your thoughts. It’s permission to breathe, even if only for a bit. That’s why our support packs include toiletries. Parents shouldn’t need to worry about tracking down the things they need to shower. We provide it for them. It’s just one way of gently reminding them that their self-care matters.

WWW.SADIESPURPOSE.ORG

Use the blank space on this page to jot down your thoughts. There are intentionally no lines so you can doodle, write your plans for the day, or use this space in any way you see as helpful to you.

“Cleanliness may be defined to be the emblem of purity of mind.” -Joseph Addison

WWW.SADIESPURPOSE.ORG

Her room at least had a window, but many NICU rooms do not. Especially if the NICU is set up in pods and not private rooms. After Sadie got so sick, our girls ended up in separate NICUs, and one of them had no windows at all. You couldn’t tell what time of day it was or if the sun was shining. One day, one of Sadie’s nurses told us that we should leave the room. She said sitting in there around the clock (or going from one girl’s room to the other and back again like we were) was going to make us crazy. I knew she was right, but I was so afraid to go.

WWW.SADIESPURPOSE.ORG

NICU Self Care Tip 2

When my daughter, Sadie was so sick, I was afraid that if I left that room she would die and I wouldn’t be there. That was my biggest fear. I stood at her bedside and watched her machines like a hawk. Every alarm sent a wave of panic through me.

Get out of the room regularly

There is perhaps not a scarier place to be than the NICU. You feel overwhelmed and unprepared. You might be terrified to leave your baby’s bedside. Chances are you are spending your nights and days right there, around the clock.

She promised me that Sadie was stable enough for us to leave for dinner. She had both our phone numbers and promised to call immediately if the slightest thing changed. My husband encouraged me, and together we decided to walk to one of the local restaurants right near the hospitals. Being out in the crisp spring night air, away from those alarms and the smell of the NICU, was so refreshing. Sitting in a booth with my husband eating a deli sandwich made me feel almost normal for a little while. I had no idea how badly I needed it. When you’re in that hospital, it becomes your world. Your baby is there, of course, that’s where you want to be. You’ll probably feel guilty when you aren’t there. But for your own sanity, please make time to get outside at least once every day. Don’t go just down to the gift shop or the hospital lobby. Go outside and get some sunshine and fresh air. Many hospitals have courtyards or gardens where you can sit to relax. Walk to a local restaurant or coffee shop for a break. Just get outside those four walls. This is such an important thing in my opinion that as Sadie’s Purpose continues to grow, we will find local coffee shops and restaurants near the NICUs we donate to, and we will partner with them to provide gift cards to NICU parents. “Some old-fashioned things like fresh air and sunshine are hard to beat.” -Laura Ingalls Wilder WWW.SADIESPURPOSE.ORG

My hope is that parents will see these cards not only as a little financial relief in the form of a meal but also as permission to get out and breathe. It is vital to your mental health.

“Some old-fashioned things like fresh air and sunshine are hard to beat.” -Laura Ingalls Wilder

WWW.SADIESPURPOSE.ORG

Use the blank space on this page to jot down your thoughts. There are intentionally no lines so you can doodle, write your plans for the day, or use this space in any way you see as helpful to you.

WWW.SADIESPURPOSE.ORG

As a NICU dad, your focus is likely on supporting your baby and your partner. Maintaining a healthy diet will keep you at your best so you can help keep them at their best.

NICU Self Care Tip 3

As a NICU mom, you are recovering from childbirth. You may be trying to pump breastmilk to feed your little one. You probably already know the importance of a healthy diet and drinking enough water when you’re breastfeeding or pumping. If you don’t eat enough or stay properly hydrated, your milk supply will suffer.

Eat a healthy diet

Just as our first two tips have touched on caring for yourself so you can care for your baby, so will this one. Eating a healthy diet is so important. Everyone needs nutritious food and enough water to stay in good health, even more so when you’re already in a stressful situation.

It can be so tempting to run down the hall to a family room with a vending machine and grab a bag of chips and a soda. While this is certainly okay occasionally, you need to follow healthier eating and drinking habits as much as you can.

WWW.SADIESPURPOSE.ORG

When you’re recovering from pregnancy and childbirth, and especially if you’re breastfeeding or pumping, you should consume sixteen cups of water each day. This comes to 128 ounces. One great tip is to drink a large glass of water every time you feed your baby or pump, whichever you’re doing. Eating healthy foods like plenty of fresh fruits and vegetables and proteins will help you maintain your energy levels. Hospital cafeterias usually have a pretty good selection of healthy food that won’t break your bank. I used to get fruit cups and yogurt at breakfast, and for lunch and dinner, I’d get things like sandwiches, salads, chicken breast, or even chicken fingers. Many cafeterias also offer omelet stations, and eggs are a wonderful source of protein. If you’re like me, you can find it hard to eat when you’re nervous or stressed. I had a very difficult time making myself eat, and my appetite was nearly nonexistent when Sadie was at her worst. Because of this, my milk production suffered, and ultimately, I failed at pumping. That only added to the guilt I already felt, no matter how unwarranted that guilt was. If you take one thing away from this tip, please let it be that. By putting a heavy emphasis on a healthy diet and plenty of water, you can know that you’re doing everything you can to be healthy for your baby. You won’t have to experience the guilt that I did. “Let food be thy medicine and medicine be thy food.” -Hippocrates WWW.SADIESPURPOSE.ORG

If you have someone that can cook meals for you and bring plates to the hospital or to your home, that is a great option. Don’t be afraid to utilize this if you have people volunteering. Your health is a priority!

“Let food be thy medicine and medicine be thy food.” -Hippocrates WWW.SADIESPURPOSE.ORG

Use the blank space on this page to jot down your thoughts. There are intentionally no lines so you can doodle, write your plans for the day, or use this space in any way you see as helpful to you.

WWW.SADIESPURPOSE.ORG

#4 Bringing us food, either take-out or meals they’d prepared. Watching our kids. Co-workers offered to donate vacation time so my husband didn’t lose pay. Doing grocery shopping and bringing the groceries to our home. These might seem like small things, but they really do help ease some of the stress you’re going through. Being in the NICU is like having a fulltime job. Your baby is your full-time job now and will be for the duration. It’s okay to need and accept help. If you’re anything like me, you don’t accept help well. I am bad about saying that I’ll do things myself. But there comes a time when you just can’t. Don’t feel guilty about this! The people offering you help are doing so because they love you. They WANT to help you! WWW.SADIESPURPOSE.ORG

NICU Self Care Tip 4

Some of the most common ways people wanted to help us were:

Accept help from others

More than likely, when you find yourself and your family in a difficult situation, friends and family will step in to offer their help. Being in the NICU is no exception. Our friends and family care about us, and they want to make things easier when they can.

In addition to the things above, here are some things you could ask those who want to lend you a hand: Check on and feed your pets when you can’t be home. Water your plants if you’ll be gone for an extended period of time. Bring you a meal or even a decent cup of coffee to the hospital. Collect your mail and make sure you get important things you need to attend to. Having co-workers take care of important tasks at work. Bring essentials you might need to the hospital. While you shouldn’t take advantage of people’s help to the point you’re using them for their generosity, it’s okay to ask those offering help to do one or two of these things for you. You may even consider getting them in touch with one another, sharing a list of things they could do with them all, and then letting them decide who does what. The most important thing is for you not to feel like you need to do it all and to accept that help they’re offering. You need it, you deserve it, and you shouldn’t feel guilty for taking it. “Accepting help is its own kind of strength." -Kiera Cass

WWW.SADIESPURPOSE.ORG

Use the blank space on this page to jot down your thoughts. There are intentionally no lines so you can doodle, write your plans for the day, or use this space in any way you see as helpful to you.

WWW.SADIESPURPOSE.ORG

Navigating your way through a NICU stay is hard, and some days are much harder than others. I recall feeling in charge and on top of everything one day and feeling like I was drowning the next. Sometimes I just couldn’t “people.”

NICU Self Care Tip 5

If someone wants to help you, for example, by bringing dinner to the hospital, but your baby had a bad day, and you just can’t face company, it’s okay to politely decline. Thank them for their offer and request a rain check.

Know when to say no

In our last tip, we talked about accepting help and how important that can be. While it’s true that you need to accept help when it's offered and genuinely needed, it’s okay to say “no” as well. Sometimes you just can’t deal with everything that is happening, and you need to tell them no.

It’s also okay to decline visitors, period. When someone has a baby, their loved ones understandably want to visit and meet the new baby. Even when the baby is healthy, this can get overwhelming. It can certainly be when the baby is ill. WWW.SADIESPURPOSE.ORG

If you would prefer that people not come to visit, tell them so. If they get offended, it says more about them than it does you. You have every right to request privacy, and you as a parent know what you think is best for your baby. I remember when our Sadie was the sickest. I didn’t want anyone coming into the room that did not need to be there. I can’t fully explain it, but I felt this fierce need to shelter her from everyone. Since I couldn’t control what she was going through, maybe that was my way of “doing something.” I couldn’t control the medical situation, but I could control who came into that room and saw her. I knew that whoever saw her like that would react badly, and I didn’t want that negative energy around her. Nor could I handle it. So, if your gut is telling you that you don’t want visitors, listen to it. No true friend or loving family members will hold this against you. . “You can be a good person with a kind heart and still say no.” -Unknown WWW.SADIESPURPOSE.ORG

Use the blank space on this page to jot down your thoughts. There are intentionally no lines so you can doodle, write your plans for the day, or use this space in any way you see as helpful to you.

WWW.SADIESPURPOSE.ORG

#6 Help with social services like SSI/Disability Parking rebates/validation if parking is paid at the hospital Meal discounts for patient families Private rooms that can be used for emergencies, such as for bereaved parents whose baby is not likely to survive Information on how to access community and nonprofit resources such as the Ronald McDonald House or nonprofits in your area. Support groups When our girls were born, a woman came to their room to talk with us about applying for SSI benefits for them. I wasn’t even aware that was an option, but because they were so premature, they could be eligible.

WWW.SADIESPURPOSE.ORG

NICU Self Care Tip 6

Some of the common programs may include:

Take advantage of resources

Many people who find themselves in the NICU are not aware of things the hospital may have available to help their families. I know that we weren’t when we first got there. Most hospitals, especially larger and specialty hospitals that have a NICU, offer services to help families.

I decided to go ahead and apply for it, and both girls were approved. They only got a small amount while still in the hospital, but once they came home, they got several hundred dollars each month. That amount of money helped us so much with special formula and other expenses we incurred that were not covered by insurance. I was so grateful to that lady for telling us about that option. Our hospital would also stamp our parking deck ticket as we left each day after visiting the girls. It helped us save a significant amount of money on parking fees, and when you’re on a tight budget, every little bit helps. These and many more services are usually available, but they aren’t always advertised. Sometimes you have to ask to be pointed in the right direction. But it is well worth your time if you find yourself needing these things. You can start by asking your baby’s nurse if he or she can get you in contact with the social worker in the hospital. That person will probably be able to answer your questions and get you set up on the right path. You don’t have to accept everything offered, but much like our last few tips, don’t feel guilty for utilizing programs that will help you and your family. -“A big part .of finding the right resources is knowing what to look for and what to avoid.” -Matthew Lesko

WWW.SADIESPURPOSE.ORG

Use the blank space on this page to jot down your thoughts. There are intentionally no lines so you can doodle, write your plans for the day, or use this space in any way you see as helpful to you.

WWW.SADIESPURPOSE.ORG

Pick up a magazine in the hospital gift shop, or bring your newest issue from home and read a few pages while your baby sleeps Catch up on that newly released book you’ve been dying to read When your favorite TV show is on, watch it if the room has a television. If not, try to watch it on your phone/tablet. Get a cup of coffee and relax in the hospital garden or courtyard

WWW.SADIESPURPOSE.ORG

NICU Self Care Tip 7

One of the most important things you can do is to relax. I know, this is easier said than done when your baby is sick. But it’s important to try to take at least a few minutes every day to just unwind. It doesn’t have to be anything extravagant:

Continue doing things to relax

Too many people (myself included) forget to care for themselves in the NICU. They focus solely on their baby and never do anything to relax. This entire guide is focusing on self-care and ways to help you, so that you can help your baby.

If you are traveling home each night from the hospital, try to be fully present AT HOME for a period of time each day. Keep your phone nearby and trust that your baby’s care team will call you if they need to. They will. Instead of thinking about the hospital, try these: Take a hot, relaxing bath Watch a movie with your partner Take a short walk in the evening- it’s amazing what fresh air can do for you! Have a hobby? Watch those birds, make that quilt, or cook that gourmet meal. Your heart and soul will thank you. If you have other children, play a board game, a card game, or read them a book While you might think, “how can I relax? My baby is in the hospital. He or she needs me there,” you shouldn’t feel guilty for taking time for yourself. Your baby does need you. But they need you at your best. So relax, do something you enjoy, and take a deep breath. You’ve got this, Mama!

“Sometimes the most productive thing you can do is relax.” -Unknown

WWW.SADIESPURPOSE.ORG

Use the blank space on this page to jot down your thoughts. There are intentionally no lines so you can doodle, write your plans for the day, or use this space in any way you see as helpful to you.

WWW.SADIESPURPOSE.ORG

I'M ON YOUR TEAM

I am a veteran NICU mom, and I know how difficult of a place it is to be. There were days when I did not know which way was up. I didn’t know if it was night or day. All I could feel was fear. It was truly the most difficult time in my life. It was hard on my family and our other kids. It took a toll on our mental health. We were exhausted and short-tempered, and on edge. It was a trying time for our entire family. I won’t pretend otherwise. This may seem like an impossible journey. When we first walked through those double doors and into that NICU, I had no idea what to expect. I was so overwhelmed, and I remember my feet moving forward, but I didn’t really know where I was going. It was like I was on auto-pilot. But after a few days, I felt more confident and like I had at least a little control. Please utilize these tips. Journal your feelings. Take what you’re learning here through Moms On a Mission and navigate your NICU stay with grace. Remember, we’re here for you, and you are not alone!

Amanda SADIE'S PURPOSE

WWW.SADIESPURPOSE.ORG

Helpful

resources M.O.M Moms On a Mission Sadie's Purpose The Compassion Friends Ronald McDonald House March of Dimes Project Sweet Peas Give A Mile BLOGS The Butterbean Legacy