World Prematurity Day

 

 

 

 

 

 

 

 

 

 

I know today there is a woman who just became a mother.

It is nothing like she had planned.

She is being wheeled out of surgery on a cold hard stretcher passed a small dark box… everything inside her is yearning for her newborn.  To have your baby immediately taken from you after delivery and sent to a team of doctors and nurses, without you even getting a glimpse of them, goes against all the instincts you have.  She uses every ounce of strength to lift her head up just enough to see her sweet child born too soon inside.. but instead, all she can see is a black mask and wires.. so so many wires…  Her newborn baby is lying in an incubator .. fighting so hard for survival.. for each breath.. every heart beat ..  She reaches out to touch him… almost for proof that he is really there.

It is pure happiness but it feels so much like sorrow.  She is filled with gratitude… from the depths of her soul so very thankful her child is alive.. but the fear of losing him is all consuming.  It is not just a fear but a reality .. she will be told again and again.. “survival is not day by day,  but hour to hour… ”   It is the beginning of the roller coaster ride.

She is standing in the same room I stood.. leaning over the same box I watched for 93 days.. begging whoever her God is to keep her baby alive. She will get a course in medicine she never wanted to have.  She will shed more tears than she even knew her body could produce.  She will gain a deeper appreciation for the word family and learn so much about people.  Angels will be there to help and carry her through.  She may have known she was having a preemie and did everything humanly possible to prepare for this moment.. but you never really can.  Days turn into months as her baby grows outside her womb barely alive.

She starts her firsts..  one week birthday means a head ultrasound to rule out brain bleeds.  She waits each of those seven days knowing its coming and there is a chance her child’s brain is hemorrhaging.  The thought is so horrifying she is afraid her touch could hurt him.  Preemie’s neurological systems are not fully developed and they suffer through endless painful procedures each day.  They say these babies start to associate every touch with pain.  His kidneys are failed.. heart maybe not working.  He is only breathing because a machine is doing the work for him.  The endless drone of beeping and alarms is deafening.  The doctors are all “cautiously optimistic,” another fun NICU phrase, that is said often when you hear good news.  There is always that reminder that at any moment it could all change.  The firsts continue to surgeries.. blood transfusions..episodes of apnea or not breathing..  and there that new mother is .. toting her NICU bag .. singing songs.. reading baby books… decorating her isolette, pumping breast milk… praying .. so much praying.. trying to figure out how to be a mother and how to care for this precious fragile baby no bigger than a ruler weighing not much more than a pound.

She is in that room with time standing still.. “hurry up and wait..” but life continues.. she has other children she must care for at home.  She has to leave her baby alone each night and go about her other life with her family.  It takes everything not to break down.  When the day is quiet she usually cries herself to sleep.  She is broken in half.. leaving behind a piece of her heart everyday.

And as she is trying so hard to figure it all out.. minutes turn into hours..hours into days.. days into weeks…you never really figure it out.. it doesn’t get much easier but it becomes your new “normal.”  She stops jumping so high every time an alarm goes off.. she learns the lingo and routine.. the people and machines become familar.. and  You watch this miracle grow… then you begin to grow too.

Your firsts will eventually change.. the first time you feel your baby skin to skin.. the first time you see your babies face without a mask on it… the first time he can regulate his own temperature and sleep without being inside a box.. the first breath of air he can take on his own.. his first day in clothes.. first bottle.. first time you see his body without tubes and wires in it.

And then by the grace of God…her dream will come true.. the first time you can kiss all your babies goodnight and wake up together as a family.. together under one roof… her heart will start to mend.

I wish I could tell her this…

It’s not what you planned but you will be able to find beauty in it one day.. that space the bond you will form with your child will be like no other .. look at your baby .. really look at them… past the tubes and wires.  watch how strong he is … how incredible this miracle is in front of you..  . you will find your strength in him.  Success is not just what you have achieved but it is also what you have overcome.  They don’t give up so either can you.  Find love and support.  You will need to live two separate lives… you will have a NICU life that few really understand and then you will have to continue with “regular” daily life.  To switch back and forth.. to try to ‘have fun”  knowing your child is barely alive is one of the hardest things I have ever had to do.  You will need to be surrounded by genuine love.  There is something about human nature that makes us take so much for granted…  but the minute you think it could be taken away from you everything changes..you will gain a new appreciation of the “little things” in life.  Watching your baby breathe and eat become so very special.   There are very few people who know what it is like to watch their child suffer… day after day after day…  surround yourself with people who can comfort you.. join support groups.. talk to someone who has gone through it.. message them.. email them.. you will be surprised how many angels you will meet along the way if you just open up and look for them. I am so thankful to have had so many.  Most importantly have faith.  Believe your baby or babies will be home with you.  Believe it with your entire soul.  I even did a nursery .. I had to picture them here in my house.  Find something to help you pass the time… and as hard as it is, take pictures and try to keep records.  You may be afraid to look at them now but one day they will deserve to see them.  I started to write.. I am far from a writer but I needed something to help me understand what I was feeling.. to help me remember where we were and how far we have come.. I want Peter and Maurice’s journey to comfort someone in need.. the final stage of healing is using what happens to you to help other people.. that’s healing in itself.

To that mom standing in our old room in the NICU right now… It is not what you planned… it not not because of anything you did… you and your babies don’t deserve this … I am praying for you.  To the mom that did not get to take her baby home.. my heart is with you and your angels are in my prayers.  I am so very deeply sorry.

Today, November 17, on World prematurity day, a day observed to raise awareness of preterm birth and the concerns of preterm babies and their families worldwide, I celebrate my son’s miraculous journey.   I am so incredibly lucky to have been chosen to be their mother.

Where there is hope ..there is faith…    where there is faith miracles happen.

In loving memory of Thomas Peter 💙

#worldprematurityday #tttssurvivor #micropreemie

 

 

 

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