I wish there were magical words that I could write to make this situation better, but I know from experience that there are no words to do that. What I can do is share with you from one NICU mom to another, some words of encouragement for both mom and family and friends based on my experience.
When you are a parent of a NICU child, your hero or heroes sit before you every day. Much like a police officer saving you from a everyday crime, my child has saved my life. He is saving his own life and he is only a few months old. I have become a very strong woman, an extremely proud and devoted mother, and a person that is grateful for each passing day. I try my best to thank God for my boys because I have now seen miracles happen right before my eyes. I go about my day as all other people do and I have my simple challenges and my crazy moments. I deal, I move on, and I live my life. Not everyone knows I am a NICU Mom, but I know that it makes a difference in the woman I am each day. I think we all live a fairly normal life, but our experience in the NICU plays a huge role in my everyday. All of us have both external and internal battle scars. My husband and I have memories that could most likely be compared to those suffering from post traumatic stress disorder. Sometimes, when a friend mentions anything related to a hospital experience, without invitation I immediately start telling my story and give details about my little tikes stay at the NICU. The memories come flooding and my mouth starts speaking even before I know what I am saying. I think most of my friends have heard my stories, but they just allow me to talk because it is polite and because they love me. We are a family of miracles. Even though I am tougher than I was before the NICU stay, I am still as fragile as the first time they told me that he would be born at 28 weeks and then he told me that 40% of the children born at my son’s due date do not survive and if they do they have complications. I am fragile as the time I was holding my breath when my son’s ventilator was removed for the first time. I am as fragile as the time that they took my son out of his isolette when he weighed less than 5 lbs. Even though I am tough, even though we are warriors, I am forever fragile because I know that life is fragile and I know that every second with my children should be cherished because they were gifts given only to us. All that being said, I am a regular mom.
I live a regular life and I think regular thoughts for most of my days. I have the occasionally slip ups every now and then, but it’s not easy being a mother and knowing my baby is at the hospital. People often ask me how I do it, and I know how I do it. I do it because I would never want to do it any other way. I need these two boys like I need to breathe. I have the guilt of not carrying my child to term. I have the memories of each roller coaster moment from my 36 days in the hospital before he was born, and continuing days in the NICU right now. I have found strength in the eyes of my child, and I have learned to be compassionate for all. The NICU is like the teacher of a class you never wanted to take, history for me. It gives you lessons that you will remember forever. Many of my memories from the hospital stays are horrible but I have a few that are great. I am forever thankful for the nurses and doctors that raised my children for those months when I could not. I will never forget the names or the faces of the nurses and doctors that saved my son’s life and I remember the love you showed me. I have met countless heroes along the way and I think I can honestly say that I am grateful for this crazy journey. One nurse in the NICU said to me “Ya know, one thing I learned about the NICU is that every person’s journey affects them the same way. Whether you are here for one day or nine months, all parents are affected. The fear that you have is the same.”
Awareness is key, as an outsider you want you celebrate the new life. However We have a hospitalized child fighting to survive. The scene isn’t jubilant yet. We are neither physically or mentally prepared for the usual frozen meals, cute onesies or requests for photos. Please don’t pry. We might not know why the baby was born early but as a parent we do feel shock and guilt about it. Talking about our baby’s health issues and roller coaster of the NICU is too scary and everything is unknown. The same discretion goes for mom’s body and health status. If we share, listen. Until then your curiosity must go unsatisfied. Offer us help however don’t be do proactive. Please understand sitting in the NICU inventing errands or shopping lists to make loved ones feel useful is a burden. Let us focus. My favorite texts were question-free and read, “Thinking of your family. Here to do anything when you want help. No need to reply now.” If we don’t respond, be patient. You might be on standby for a few days—or weeks—but we’ll probably take you up on the offer. Be calm and cautiously optimistic in front of preemie parents. Crying to us on the phone or telling us you’re worried sick makes things worse. Be zen. Our parents kept their cool and it reassured us. Skip asking when the baby will come home. The due date is the target and we’re more impatient than you are. We’ll share when NICU staff give the green light, I promise. Most of all, tell preemie parents you believe in them. Friends and family told us we were good parents doing everything right. Your love is powerful medicine and we need it now more than ever.
you are a regular mom, tho most days it doesn’t feel like it. You got this. Do not feel you are over sharing with telling people about your bundle of joy. Write down the good and bad, it helps to get it out and have a place for people to read about what is going on so you don’t have to repeat yourself over and over again. This helped me not relive the moments again and again. I used Facebook to keep my friends and family up to date. Mainly because you’re likely going to be bombarded with folks who care about you dearly. Folks who want to help you. Folks who want to fix the situation and take away your pain. Occasionally they’ll say things to you that will hit a nerve. They may be under the assumption that your baby is just in the NICU because he/she needs to grow a little more (not knowing the battle your child is in). They may demand you stop grieving and ask you to be glad that your baby is still alive. Some may go as far as to say to you horrible things such as, “At least you didn’t have to go to the end of your pregnancy and be miserable” (True story.)
But the truth is, unless they’ve been there, unless they’ve walked this, they won’t know that your heart is broken. They won’t understand that you’d do anything, go through anything if it meant you could just carry your child to term and save them this pain. It will take some getting used to, but often times you’ll juggle being thankful for your child’s life while being scared to death for their future. That’s ok. You see, some of us have been there. Some of us are still there. And we want to tell you one thing: all those feelings, those conflicting and sometimes awful feelings, they’re normal. Yep, totally normal.And no, you don’t need to explain them to us. We get them. We’ve had them. We’re still having them.
Plain and simple: the NICU is traumatic. All of the uncertainties, the obstacles your child faces, the pain, the statistics— it all takes it’s toll. But you will emerge. You will find a hidden strength that you never knew you had. And you’ll see the strength of your child. You’ll grow amazed and proud of them as you watch them win their battles.
As you navigate these new waters, Don’t be afraid to speak up and speak out. Find your voice and share your feelings and concerns. Allow yourself the opportunity to correct others who may misjudge your fears of the future as an inability to appreciate the miracle of your child. Grieve. Lots of things have been lost along the way- a normal pregnancy, a normal birth, a normal departure from the hospital… the list goes on and on. Grieve it all. You’re experiencing loss, a huge, unimaginable loss. Know that you can’t prepare yourself for the future (after all, no one can predict it) and force yourself to stay in the present. Deal with the hurdles of the day. But when your mind does start to ask the “what ifs” about the future (and it will), when you start to doubt the path you’re on, don’t beat yourself up for it. Face those “what ifs” with courage and know that the strength you’re discovering will emerge as you face each and every new trial. Remember that your child, not statistics will determine his/her course (these stubborn NICU babies rarely follow the predicted path). And finally, know that you’re not alone. Some of the most therapeutic times are found in the NICU when moms begin to connect. Share stories with each other. As you begin talking, you’ll likely find that these women who you thought were so different from you, have now become the only ones who understand your heart. Don’t be afraid to talk to them. Chances are, they’ll appreciate knowing that they’re not the only ones feeling this way either.
This journey that you’re on, it’s a battle. It’s likely to take some turns. You’ll make advances and retreats. Sometimes it will feel like you haven’t left the trenches in weeks. But you will emerge. You will make it. The battle will end. And one day, you’ll look back on this time and it will be a blur. A new normal will emerge, you’ll begin to find happiness and good times again and you’ll look on your scars knowing that each one represents something you have conquered.
– Alyssa Queensberry is a Green Bay resident who gave birth to Preston Scott , born 12 weeks early on July 19th, 2018. He weighed 2lbs 11 oz & 15 inches long.