Friday, September 5, 2014

For the NICU Mom

To the NICU mom. I see you. I get it.  5 years ago I was in your shoes.

The day of your child's birth.  It's suppose to be a magical day but instead turns into a nightmare.  One minute you're holding your baby in your arms and the next minute they are wheeling him to the NICU. Some of you don't even get the chance to hold your baby before he is carried off in an incubator.  Instead of holding, feeding and loving your child your days are reduced to short visits by his bedside.  Nobody visits you and you don't want any visitors.  Nurses basically leave you alone and when they come to your room they have a sadness in their eyes and speak to you in hushed tones.  Your eyes are perpetually red from crying. There is a dark cloud hanging over you.  You can't eat. You can't sleep.  You go through the daily motions of life but you are numb.

You walk in to the nicu.  You would expect that a room full of babies would be loud. You'd expect to hear baby cries, coos, hear the babies moving around. But there is none of that.  All you hear is the soft sounds of machines.  Hear the occasional beeps of a monitor.  It's completely silent.

As you look at your baby, you see him covered in wires.  He lies completely still and looks like an alien.  You wonder what happened.  Was it something you ate. Something you did or didn't do.  Your husband is there too.  When you look at him you feel his sadness but he is trying to be strong.  Men aren't suppose to show emotions but you see how much this is tearing him up inside.  He's doing his best to comfort you.  But you can't be comforted.

The nurses are respectful.  They explain everything that they are doing. They give you updates. But it's not the same. YOU are suppose to be feeding your baby, changing his diaper, rocking him to sleep. Instead a stranger is watching him. They know his needs.  They are his caregiver.  You feel like a failure and a bad mom.

As you spend your days there, you watch other babies come and go.  You see the happy parents as they put their baby in the car seat to leave. They look at you with pity and sorrow.  Then they turn around and walk out of the room with their baby. They are going home.  You are not.  You feel a lot of envy. Then guilt because really do wish them well.

You worry so much about bonding with your baby.  You hear the experts say how important it is to bond.  How can you bond with a baby that is covered in tubes and wires?   How can you bond with a baby that has to live in the hospital while you live at home?  How can you bond with a baby who is always asleep every time you visit?  How can you bond with a baby when they won't even let you hold him?

You have other children who need you so you leave your baby in the hands of strangers and head home to your other children.  You put on a brave face and try to act like everything is normal.  You go through the routine of cooking, eating, homework, hanging out at home all the while knowing someone is missing.  Your body is at home but your heart is at the hospital.  You don't show your other children your tears because it will scare them.  You put them to bed at might and allow yourself time to grieve.  You're grieving for the baby who does not have a diagnosis. You're grieving for the happy time that families have in the hospital after a baby's birth.  But you have no good memories.  No first pictures.  No happy visitors to your home.  No chance to dress your baby in the cute little clothes that still sit at home.  The baby needs no clothes only a diaper.  By the time your baby comes home he will have outgrown those cute clothes.

Every time the phone rings you jump. You race to see if it is the nicu calling.  You really begin to hate that place.  You know you need to be there but you really hate to go.  You wonder why you even bother because all you do is sit by your baby's bed while he sleeps. How is he going to know if you are there or not?  But you go.  You make yourself go because some small part of you hopes that he hears your voice and feels your touch.  You pray that he knows you're his mom and that he know you love him. Most of all you hope he knows how sorry you are that he has to stay there.

You wait for a diagnosis. The doctors tell you the tests they have done.  Everything comes back normal. You are relieved but your patience is wearing thin. Why can't they figure out what's wrong?  With all of his technology why is it taking so long?  Then the day arrives. As you visit your baby all of the doctors and nurses gather around.  Their faces are somber.  Nobody is smiling.  Your heart clinches in fear.  The doctor says what you have been waiting for but dreading to hear.  You have a diagnosis.  You hear the diagnosis and your heart breaks into a million pieces. You crumble and your husband reaches out to support you.  You cling together as the doctor keeps talking.  But you don't really hear him at first. There's this roaring in your ears. You feel like you are outside of your body.  Then you start to calm down and focus on what they are saying.  You hear the words "home" and "he's going to be fine" and you begin to feel a little hopeful.   You begin to realize that the other doctors were wrong. Your son will not live in an institution. He will come home.  It will take a long time and you will have to have a lot of machines to keep him alive but he tells you the magic words "YOU" will care for him at "HOME".  The diagnosis is terrifying.  You're so very sad that this will be your child's life from now on but there is a great relief in knowing what's wrong.  Now you have a plan.  Now you can work towards getting him home. There's a light at the end of the tunnel.

I am here to tell you that you can do it.  You're stronger than you think.  Life will never be "normal" but you find your own new "normal".  You will come out of this a stronger more compassionate person. You've been changed forever.  Not many people have been through what you have.

As you sit at home and hold your baby you realize how precious life is. You see how much of a fighter your baby is and he becomes your hero.  He's so strong and you know that he can handle whatever life throws at him because he's been through the darkness.  Occasionally you will be brought back to those dark days. You will smell hand sanitizer and be reminded of the hospital.  You will see a mom somewhere in public holding her newborn baby and have some regrets that it wasn't the same for you.  Your baby didn't get to wear the cute clothes.  Your baby didn't get to have a first photo.  Your baby didn't make a sound for a very long time.  But you realize that none of that matters now.  All that matters is that your baby is home where he belongs.  You have finally bonded and your bond is unbreakable.  You and your baby have come through hell and your love is fierce for one another. Now the little baby begins to grow and only wants you. Nobody else will do.  You never tire of the baby clinging to you.  You never complain about the sweet little boy who has grown up to make lots of noise. You embrace every hug, every kiss, every I love you. You even embrace the messes, the noise, the times you have to send him to the corner. You secretly love it when he's disobedient because that means he's alive and living his "normal" life.   You embrace all of it because you know how precious it is.  You enjoy every little moment.

Hang in there NICU mom.  One day you will look back on this experience as a bad dream.  There is hope. You're not alone. You will get through this.