Dear Mama, welcome to the club you never wanted to be a part of but this is one of a kind. You are about to take part in a life-changing roller coaster ride. Hold on to your seats. It will be a bumpy ride, but you’ll never be alone. This particular club you just joined will never leave you on this journey on your own. We are all survivors and always willing to lend a shoulder to cry on share our child’s story to provide you hope and a hand to hold through it all. First, take a deep breath and let it out slowly. Your child is in the best hands they can be in. take comfort in that and trust the medical staff to care for you and your babies. Please get to know the nurses; they will be with them day in, day out, morning and night. They will know what your child needs before most anyone else. Be good and kind to these people; they are angels walking on Earth among us. Often, find your NICUs social worker; they have already seen you when you first get there. Let them help you, there is so much going on, and they have the resources to help you and your baby.
Join your NICU support group
It’s a safe place you can let your feelings, fears, triumphs, and everything else that goes along this journey with those who get it and share in those same things. Those bonds you make with the parents in your NICU are for a lifetime. I wouldn’t have made it through without my NICU mommas! If there isn’t one in your NICU, join one on the internet, there are many options. They know and understand what you are going through; it may not be the same path, but they are on a similar one; each baby and family has a different story and outcome, the one common thread is you’re going through it together. If no one else reaches out to me, ill be an ear to listen and shoulder to cry on.
I won’t lie, it will get hard, and you won’t know how you will continue and how much more you can take, have faith. You don’t pray or believe in a higher power? Well, guess what? Now is the time. NICU walls have heard more prayers and cries than anywhere else. After all, it’s where miracles happen daily! Find what form of worship or faith will help you. My faith in God was the strongest it had ever been in my life, and I prayed more than I have ever prayed. I found comfort in the hospital’s Chaplin; he was Episcopalian, and I’m Catholic, so it doesn’t matter your religion. Connecting with other parents who had been there also helped me hope. They don’t have blinding hope; sometimes, the best thing is to find peace was enough.
Assistance Is Available
Seek out child life services if your hospital has this department.
Ours did, and it was great for the entire family. They provide services for the patient, which helped me, such as music therapy and learning to do baby massage. It was amazing for my daughter; they did yoga and took us to the play area to have some one-on-one time while in the hospital. They played with her and read books to help her understand what was going on with her baby brother.
Don’t Be Detached But Involved
Be as involved as you possibly can in your child’s care, from rounds, therapies, and touch times. The more you are involved, the better it will be for your baby. Read to them, play music, talk to them. When therapies have been done, ask what you can do with the baby until they have treatment again, it’s not daily, so on the off days, you should do it. Ask all the questions you have; you’re not a bother to the medical team. The more you know, the more you can advocate for your baby. Trust me; they appreciate an involved parent. Speaking of medical teams, create your team nurse list. There will be a few you may not connect with or don’t want near a baby for different reasons, and it’s okay to tell the charge nurse you don’t want them on your team. Remember that you are your child’s number one advocate, supporter, cheerleader, nurse, Occupational Therapist, Speech Therapist, Physical Therapist, and you get the picture from here on out. Get comfortable in this role because it will be your role when you get out of the NICU. This journey does not end at the discharge process. It continues beyond those doors.
It will be challenging, but try your best to eat and rest. You can’t be of any use to your baby, children, or spouse if you are not rested. It’s a marathon, not a sprint in most cases, so pace yourself. It’s okay to take time away from the baby to do other things; I promise they are in good hands. Communicate with your spouse about what’s going on in your head, what you’re thinking and feeling, let them do the same you will be each other’s most incredible support system as your both going through the same journey. You may not always agree on the action plan, so talk it through. Follow your heart. Please don’t give up on them; they are fighters, true miracles. You were chosen to watch a miracle unfold right before your eyes. What you are going through right now will change your life forever! You won’t be the same person you were before entering those doors; you will be a more robust, better person. You will stand up for yourself and your child. Nothing much else will be able to scare you after this. It will push you so far out of your comfort zone you have no choice but to grow from it. You will appreciate all the small things that others take for granted.
Your Mental Health Matters
On occasion, random things may trigger me into an emotional mess, still to this day. Something that may linger after, even years later, is triggered. Be gentle with yourself, you will have gone through a lot, and it will take time. One day you will look back and be proud of yourself, of all you were faced with, which was meant to break you and survive. No matter the outcome, knows that you’re a survivor and forever part of a club that is one of a kind.
A parent to a NICU miracle.