The following content was written by Bronson Children’s Hospital NICU graduate parents. The information shared is based on personal experiences and is not intended as medical advice. Families should consult their baby’s care team for medical guidance.
Dear Reader,
Congratulations on the birth of your new baby!
Although most people do not expect to have a NICU journey, many have walked the path before you. This section is filled with advice from NICU graduate families. We remember the fear of the unknown, the brokenness of not being able to hold our baby right away and the pain of leaving the hospital without our babies. We hope our stories can give you encouragement and confidence as you walk your NICU journey.
Each journey is different; every family is different; every baby is unique. What can be said is your baby is being cared for by experts who want them to get better and “graduate” just as much as you do. Until then, let our advice help you through your journey. Remember: you’ve got this!
Sincerely,
Bronson NICU Graduate Parents
NICU Journey
- No journey is the same, your baby is unique.
- Your baby is strong and resilient - a fighter.
- Be prepared – things change quickly!
- I know your baby is small and your hands seem huge but don’t be afraid to touch or hold you baby. They need it! Care time is an excellent time for touch and interacting with your baby.
- The NICU is both wonderful and terrible at the same time.
Parent Presence
- Your baby knows you’re there they can feel your presence even if you’re not touching them. Your love will bring them comfort and peace.
- Sing, pray, read, talk to your baby, they are listening.
- Skin to skin is essential and helps build connection for all: mom, dad and baby. It is important to the development and progress of your baby./li>
Mental Health
- It’s okay to be sad. Having a baby is such a wonderful experience and when things don’t go as planned and we don’t get those dreamy newborn days it can be a sad thing to come to terms with and its okay to feel that way!
- Breathe.
- Its okay to cry.
- Take it easy on yourself. Those doubts and “what ifs” have a way of creeping into our minds and making us (especially us mamas) feel like there may have been something we did that lead to our babies being in the NICU. Give yourself the grace that you would extend to others in the same situation. Take a break when you need to clear your head or just get some fresh air.
- You are not alone. Allow those that love you to stand in the gap for you. Talk to your baby’s care team about the resources available to you.
- Get through one day at a time. I know that sounds cliché but understand that setbacks come with the journey. Appreciate the small victories.
- Do the best that you can to take care of yourself physically, mentally, emotionally & spiritually – and then forgive yourself when you are off balance.
- Try to stay positive and hopeful even through tears and scares. Hope helps facilitate peace.
- Enjoy something as you did before. A happy healthy you is a happy healthy baby.
- Shower. That smell in the NICU is you, my friend. It’s ok, it was me too. All NICU parents have been there!
- Go talk to someone about your feelings. It doesn't have to be a therapist, just someone you feel comfortable opening up to. The "rollercoaster" of emotions you will feel from day to day are real and need to be expressed in a healthy way. I sometimes felt that being a parent of a preemie in the NICU was like being bipolar because you can go through so many different emotions in one day very quickly!
Journaling
- Take a photo and keep a journal with your baby’s progress, weights, tests, procedures and results. Celebrate milestones! Seeing the growth and changes are amazing.
- Make the room your own. Put up themed stuffed animals or drawings, a lit tree or inspirational messages. You can also tape a black and white photo of parents and siblings to the incubator or crib.
- Write down questions that come up and keep them in the room so you don't forget things. A journal is helpful for listing your question. I would write my questions in the back of the journal and wrote about what was happening each day in the front.
Parent Encouragement
- Dear NICU Parents, you are awesome, brave and strong. You can do this. You will get through this. The end.
- Don’t beat yourselves up because you can’t be at your baby’s bedside all of the time. You’re not negligent; you have other responsibilities to juggle as well. Just be sure to make the most of every moment that you do spend with your baby and call frequently when you can’t be present physically.
- You’re doing the best you can with what you have.
- Remember that someday this will all be just a memory about how you triumphed over adversity.
- While most things are super hard not to compare to “normal” parents, there are actually some really unforgettable things that only NICU families get to witness with their children, so take every win and don’t feel bad about it.
- If you have a partner, hold on to them tight. Don’t do that thing where you climb into bed, play on your phones, grunt goodnight and fall asleep. Talk to each other. You are both walking in a fog of anxiety. Husbands have a hard time when they are powerless in a situation involving their kids. Don’t do it alone. Hold hands and remember the love you have for each other. When the fog lifts, you will come out together.
Pumping
- Pump if you can. At times I felt helpless and overwhelmed watching my baby struggle in the NICU. Pumping was one thing that helped me feel in control, and help provide for my baby. It was tough and exhausting at times, but the benefits were absolutely worth it. I dedicated myself to pumping for an entire year, and it was an amazing moment and feeling of accomplishment when my son was finally able to nurse.
- Dear NICU Mom, don’t cry over spilled milk, literally. In a situation where you feel like you’ve been rendered powerless, supplying breast milk feels like one of the few things that you can do to actually help your baby. In the event that you spill some, don’t beat yourself up; accidents happen. Don’t go down the rabbit hole of worrying about what could potentially happen as a result of that one spill (or four). Your baby won’t lack nourishment and you are not a failure.
NICU Dad
- Dad, just hold your baby’s hand. There is nothing more beautiful than the feel of your baby’s small and smooth hand. Not far away, that small hand will take you places to explore.
- Dear NICU Dad, don’t suppress your feelings because eventually you’ll explode. It’s ok to say that you feel overwhelmed, sad, angry, disappointed, powerless, frustrated, numb, etc. Those that care about you can’t be the best help to you if you don’t express what’s going on inside. Lean on those who are in your corner.
Siblings
- If there are older siblings, have them participate in the time you are with baby. This will make them feel that they are also contributing so baby can go home soon.
- Siblings need to bond. It is ok to bring them to meet their baby. Take photos and remember the journey and who was with them. But have a plan for them to leave if you want to stay. A child tends to focus about 5 minute per year of age. (Example a 4 year old will do best with 20 minutes in the room.)
Peer Support
- Sharing your feelings and talking with other NICU parents who are going through a similar experience can be extremely helpful. Trying to explain everything to family members and friends outside the situation can be overwhelming and exhausting. I found that connecting with other preemie parents was beneficial and made the experience less isolating.
- Join the fun and other families for activities (scrapbooking, free meals, free pictures…). It helps to have friends and it might be just what you need that day.
- Laugh, please. And say, “Hi,” to the other parents at the hand washing station. We’re all in the same boat.
- Talk to someone who has been through the NICU journey.
Other Advice
- Know your support options (understand your resources).
- Find a routine that works to fit in everything you feel that you need to do every day and stick to it as best you can.
- Feeling out of control will make you want to take control of what you can. Try to focus on what you CAN control (decorating the room, updating people on baby's progress, taking care of yourself, breathing etc.).
- Don’t let the equipment intimidate you. Don’t be afraid to touch, hold, sing to, rock, and love on your baby. It really is the best medicine.
- It’s normal to ask a lot of questions in the NICU about what your child’s future will be like. Many of these predictions will not really be that accurate. The NICU doctors and nurses are really experts at taking care of tiny babies, not predicting adolescent and adult outcomes of their patients years down the road.
- Resist the urge to google every possible outcome.
- Speak up for your baby and for yourself. YOU are the parent and sometimes communication gets lost between providers so having you advocate for your baby's care is essential in having a great plan and continuation of care between all involved.
- Make sure you have a common object that doesn’t change (I.e. a pen, marker, dollar bill) to put next to your baby in their first pictures to compare their size at birth to later pictures.
- Do accept all the meals. We felt a little awkward accepting all the help that our village gave us: food, meals, frozen meals and gift cards. But it seriously made each day so much easier to manage knowing that we had good quality food waiting for us that was quick and required no extra thought on our part. It was one less thing to think about or worry about and eating good definitely makes your whole self feel better.
- Avoid social media. Some well-meaning obscure relative WILL comment on one of your posts of pictures and say something that you WILL (in your grief and exhaustion-induced delirium) get very angry about. Someone should make an etiquette book for relatives and Facebook friends of NICU parents.
- If you are at home and want to know what’s going on …call the nurses. I did this often and they never made me feel like I was a bother. I always slept a little better after I got my baby update.
- Do what YOU feel you need to do. Don’t let family or friends make you feel pressured to do anything else. You and your baby’s well-being are the MOST important!
- Play music (lightly) while you are in the room to soothe you and the baby. The music therapist has appropriate music available for you.
- For moms: Do take the time to put yourself together from time to time before you head to the NICU for the day. Spend that little bit of extra time on your hair or outfit occasionally. For me, it helped me feel more normal. In my mind, it helped me feel more like the productive super mom I dreamt of being. Visualizing getting myself and the kids ready on a regular day was a positive frame of mind to set myself in for the day. Don’t get me wrong here…I didn’t do this every day because comfort, ease and quickness are good too. Taking that little bit of extra time for you to remind yourself of who you are – not just a NICU mom – is a great mental boost.
- It may take some time for your baby to catch up developmentally to babies their age. They will do it on their own time.
Trisomy 21
- Getting a genetic diagnosis is like the first time humans landed on the moon. It is “one giant leap for mankind” to be compassionate, loving, innocent, pure of heart and become part of a universe unexplored!
- It doesn’t matter how much or how little you read and know about Down Syndrome or any genetic diagnosis, once your eyes meet with your baby’s eyes, your heart melts and knows they are perfect.
- Down syndrome is not the end of anything, it is the beginning of a beautiful journey that never in your mind you thought you would take!
Working with Staff
- Build relationships and connect with the medical staff. This will make it easier for you to ask any questions that you have and stay updated on your baby’s health. The NICU is a completely new world for parents and can feel overwhelming at times. Don’t be afraid to ask questions if you don't know or understand something. Take this time to educate yourself on your baby’s specific needs. The doctors, nurses, lactation specialists, social workers, music therapists, physical and occupational therapists are a wealth of information.
- I know you are scared but love your nurses and doctors they are truly on your side doing their absolute best.
- For dads: Its overwhelming. All of it. And the moms always get all the attention. But be open and honest with someone about your thoughts. Don’t think that it’s a burden to do so.
Discharge
- Stop keeping count of all the babies that have come and gone in your hallway. Your time will come exactly when it should.
- Don’t rush. You will want to go home with your baby but let them grow and become strong. Rushing brings frustration. Anticipate your due date and know things change day by day. Could be sooner could be later and that’s okay.
Ruth-isms
- No one chooses the NICU as a birth plan, but it is awfully nice to have it here when you need it.
- Wouldn’t it be nice if our medical teams, teachers, or any specialist that work with our children have crystal balls? Or if our children came with instruction manuals to tell us exactly what will happen and what we need to do as parents to help them? Unfortunately, the medical profession is not an exact science and what works for one does not work in the same way for another.
- NICU babies do better with early intervention, parent involvement, and a nurturing environment. Make this your goal!
- You get more bees with honey than with vinegar. Work together as a team toward your goals.
- When you go home, baby wearing is an excellent way to protect your baby from the touches of others. When I wore my baby close, people would look but not touch.
- Watching a preemie learn to eat is like participating in a 3-course meal. Its thoughtful, they enjoy every bite and it takes a lot of time. With my full-term babies, it was like going through a drive thru – fast and done in 10 minutes.
- To those who have experienced a loss, I can say that with time, the pain softens, the memory stays and you can find your joy again.
- No journey is the same, your baby is unique.
- Your baby is strong and resilient - a fighter.
- Be prepared – things change quickly!
- I know your baby is small and your hands seem huge but don’t be afraid to touch or hold you baby. They need it! Care time is an excellent time for touch and interacting with your baby.
- The NICU is both wonderful and terrible at the same time.
