“You have to hold your baby and don’t look at the monitors…”  the nurses will tell you over and over.  Sounds so simple right?  Of course I want to hold my child.  I travel over 3 hours to be with him.  I leave my other 3 children for countless hours.  How could I not want to hold my baby.  This precious gift that was growing inside, that I prayed for with every piece of my soul…every minute of every day.  That I almost lost so many times.  Now you are here .. Right in front of me.  You have spent too many days alone in an isolated room, inside of a plastic box.  You don’t get to hear the sound of my voice or your sisters.. you only hear the endless drone of beeps and alarms.  Now you don’t have your brother with you.  For 59 long sleeps we have spent each night apart.  I don’t want to look at all the wires and all the monitors around me.  I don’t want to understand them.  I only want to look at you… my precious baby.

You are back on the same respiratory support you needed when you were born at 790 grams almost 2 months ago.  You are swollen.  On Sunday your heart rate dropped while you were eating.  You couldn’t maintain your oxygen.  You wouldn’t even suck on a pacifier.  We have graduated from Cpap twice already only to return back to it.  Your lungs are now unable to hold enough air and you have decreased lung volume.  The little air sacs have collapsed diffusely.   They said you “pooped out and “got tired from working to hard.”  Our doctor told me it was likely due to a trial you had off of respiratory support.  They said you failed and now you were requiring more.

My angel Maurice, you are lying on me skin to skin, and all I can think while feeling your tiny body is why have you had to always work so hard?  Why has your short life been filled with so many challenges.  During our pregnancy and now.. you have had to survive so many obstacles.  At only 16 weeks pregnant the doctors told me you had a severe genetic condition and that your brain was not normal.  We later found it to be benign.  They said you might not make it because you had an abnormal umbilical cord missing an artery.  They told us it was not attached well to the placenta.  That you wouldn’t grow and that likely wouldn’t survive.   We didn’t give up… You had decreased amniotic fluid or Oligohydramnios and you were “shrink wrapped”in your sac.  This is what happens to donor babies in TTTS.  They  “give” all the fluid and blood to the other twin.  The stress and decreased perfusion causes the bladder to stop working and they can no longer produce urine ( amniotic fluid is made up of mostly urine). it also causes problems with lung development. You were born with heart and kidney failure and didn’t urinate for the first few days of your life.  We didn’t know if you would live.. and you didn’t give up….

Now here we are.. your teeny 790 gram (1.7lb) body has grown to 2105 grams (4.10 lbs).  Knowing all you have been through only makes me want to hold you more.   For so long you were not safe inside my body…. all I want is to keep you safe… for my touch to help you heal.

Any mother who has had a complicated pregnancy or tramatic delivery feels this way.  Your body which is meant to grow and protect your baby.. but sometimes it becomes a source of harm… and there is nothing you can do about it.  The only thing that can be done is literally cutting you open and getting them out as fast as possible.  There is a healing process you must go through after something like this … you have to find forgiveness … for yourself.  You have to forgive your body and let go of the blame ( even though you know it’s not your fault)… letting go of that is a difficult and sensitive process.

The idea of “holding your baby” is part of the healing.  Now seeing your body again as a source of comfort… it’s critical. In the NICU, they call it Kangaroo care.  It’s holding your baby skin to skin.  The benefits range from improving babies respiratory rate to helping you produce more breast milk.  There is true medical data showing benefits of kangaroo care and it is encouraged in the NICU.

Two days ago while holding Maurice.. he turned blue.  I had to hit his back repeatly .. I screamed for help.. and then he started breathing again.  I was told maybe it was from the position I held him in..again I went back to that place.. when my body didn’t provide you what you needed. I’m so scared to hurt you and even more afraid to lose you.

Today I was petrified to pick you up.  Besides that comforting time with me, my Maurice.. your contact with people consists only of procedures and tests.  You may have a needle in your heal and someone milk out the blood for testing.  Your respiratory therapist comes in a few times a day to check the machine taped to your face.. forcing pressure and water into your tiny nose.  On some days they even peel the sticky tape off your face and replace it with new.  The doctor comes in once a day to do an “exam” .. press on your belly..  listen to your heart and lungs.  You get weighed and measured at night.  Your nurse is required to check the “patient” prior to feedings, check your temperature and do a diaper change.  They are paid to care for you.  It is a job.  But for some nurses it’s a calling… and the mothers who are lucky enough to have them… it’s a gift.

One nurse told me she likes to read what I write because it gives her some insight to what a mom is feeling.  I want my nurses to know the only thing that keeps a mother sane during this nightmare is them.  It is the staff and the hospital.  Knowing your baby is safe when you are not there.  Knowing they are kept clean and cared for.  Knowing that your helpless child is receiving the best possible.  It is a relationship that is based on trust.

Only when there is trust can us moms “not look at the monitors.”  Only when there is trust can we reach in and pick up our tiny baby weighing less than 2 pounds with wires attached to every part of them… it is the only thing that allows you to sleep at night..  Once there is trust .. there is everything.  Holding will come natural.. we may cry and still be scared .. but we can do it.  Once there is trust we can believe you when you say it won’t hurt them.  Once there is trust you can turn the monitor around because we know you are there watching over us.  An important part of this is also knowing when to say you have made a mistake or when to ask for help.

The next time you say  “hold your baby”  to a mom that is scared.. look her in the eyes.. try to feel her pain and fear.. how desperately she wants to be close to her child… try to see and understand that.  Don’t point out the things we are doing wrong.. instead empathize.  If there are changes in the monitor come in to make sure she is not holding the position wrong.  Be as competent as you can be at your job.  Offer a sense of security.   Never forget what this job means to the mom sitting next to the plastic box.