Dear NICU Momma:
Right now is the most stressful time in your life. Few feelings will ever come close to the fear, heartache, and agony of knowing your baby is suffering and being helpless to stop it.
There is a saying that says “No parent should ever have to endure the loss of a child.” I have come to believe that saying is also extended to suffering. No parent should ever have to endure the suffering of their helpless child.
But somehow you and your baby defied statistics, and you are. You are looking at your child through a hospital window, privileged to touch them briefly if you’re lucky. You feel robbed, beaten, and confused.
How could this happen to you? Why your baby? What could they ever have done to deserve this?
So many questions, so many pleas will flood your mind. You will question everything you have ever known. And I’m sorry to say, but you may never know the answers.
But you will make it through this. Even if the worst happens, someday you will heal. Your heart will go on beating, though you may wish it to stop. Your little baby is already and will always be a part of your heart.
My little girl was born with severe oxygen deprivation, damaging the entire surface of her brain. The only part that wasn’t affected was her brain stem. She started seizing every minute and a half, twelve hours after she was born. Her status was critical, and the diagnosis was bad. After a lifeflight to a NICU and a few days under neurologists’ care, doctors were able to stop her seizing, but they weren’t sure if she would ever function independently. She couldn’t breathe, eat, or move on her own.
I was in the worst agony I have ever experienced. I would sign up for the pain of labor a million times again and could still not scratch the surface of the pain in my soul.
Now, six months later, I look back, marvelling on how I survived. I never thought I could get through that, but I did. I made it. And you will too.
I know it sounds crazy, but you’ve got to have hope. You’ve got to have something to believe in. It doesn’t make the pain go away, it barely makes it easier, but it does give you fuel to go on. And that’s all you can do right now, hang on and hope.
While Emm was in the NICU, my husband and I chanted, “Have faith and see what tomorrow will bring.” Sometimes that was the only thing that could drag me out of bed in the morning. Things might be bad today, but they could be better tomorrow.
I encourage you to decide what you will have hope in, and repeat it to yourself. Engrain it in your mind. One of my favorite lines from Les Miserables the broadway musical is “even the darkest night will end and the sun will rise”.
So it is for you, so it is for your baby.
My daughter slowly got better. Each day, she improved a little bit. Soon, we could see the impossible happening. She was moving. A couple days later she could breathe on her own. And a couple days after that, I got to hold her and breastfeed her. After two weeks, she was off life support and functioning well. She still had a few reflexes that weren’t developed, but we got to take her home. Today she is a happy and healthy little girl, though she is still considered special needs with some of her muscle movement.
And who knows? Maybe she will still be far behind the other kids her age as she grows. But she is alive. She is happy. She is loved so much more than she knows. And we are still making it day by day, having faith and seeing what tomorrow will bring.
While you wait for the sun to rise, here are some things that helped me survive our NICU experience:
Cry. And cry hard.
This is not something you can hold in, I’ve tried. Find a soft pillow, bury your face in it, and scream and sob as hard as you can. I had to do this every single night for the first week. Keep tissues close by and rub blistex on your nose every morning.
Also, be okay with crying in the hospital. The nurses know you are going through something traumatic, they don’t judge. They may even offer you some tissues and a comfy chair to sit in while you cry.
If you can have a good cry at least once a day, it helps you to control sobs throughout the rest of the day. I was strengthened knowing I had time to cry right before bed, and I was able to control myself while talking about important things like treatments with the doctors.
Find someone to talk to about this
I can’t stress this one enough. There will be ministers at the hospital, friends, relatives, lots of people who can listen. Pick someone and unload all of your feelings.
My husband and I did this for each other and it brought us very close together. We needed to know that our suffering was heard. Once you’ve shared the deepest, scariest fears with someone, it lifts a heavy burden off of your heart.
Take care of yourself
I love long soaks in a bathtub, and I took one every night before bed. I was still recovering from labor too, and this provided an immense amount of physical relief. In the mornings I washed my face before we went to the NICU, and that helped me feel a little better about my cleanliness. Do the simple things that make you feel better when you’re sick.
Visit Baby as often as possible
Visiting your baby will heal your heart. They are stronger than you think, and their strength will lift you. Seeing them alive, seeing their heartbeat on the monitor, can help lift your fears.
Help with anything you can with baby
It made a huge difference in my heart when I was able to give my daughter a binkie, or rub lotion on her feet, or change her diaper. Anything you can do to help your child will help you feel more useful and in control, which is priceless in this situation.
There are many people who will aid you at the NICU. Take every bit of help you can get, don’t be shy. People gave me things, advice, that I thought would be useless but turned into lifesavers. Soak it all up.
Do something fun once per day
Enjoy reading? Find a good book. Love a good strategy game? Download a new game on your phone. Find something to distract you and make you smile every day. It will lift that deep sadness even if just for a moment. I love listening to clean comedy like these Jeanne Robertson videos.
You WILL make it through this. Probably even better than you think you will. I have heard so many miracle stories in the NICU, and you can have hope that each day can be better for you too.