Friday, January 30, 2015

Waiting to exhale

I remember the moment it happened.  I was just 27 weeks pregnant, admitted to Albany Medical Center's antepartum unit with polyhydramnosis and in pre-term labor.  One of the high-risk obstetrics doctors was performing a lengthy, in-depth ultrasound.  The room was filled with medical students, residents, nurses, the attending, and my husband and I .... yet you could hear a pin drop.  I watched the expression on his face and studied his eyes with intent, watching, waiting, needing him to say something.  I began to hold my breath, not knowing what the next moments of our lives would hold.  His expression continued to change, to intensify, as he studied the monitor in greater and greater detail.  The suspense was too much to bear.  It felt like hours went by.  Hours of silence.  Then finally, he spoke.

 

The doctor told us our baby girl had an intestinal obstruction in her duodenum, what they nickname a "double bubble."  She also had a large hole in her heart.  And he said she had Down's syndrome (which was later proven untrue).  We cried.  I cried.  And I continued to hold my breath, waiting for a miracle, a change, waiting for something to make it all okay.

01-09-2012 IMG_1692

She was born later that day after my water broke, via emergency C-section because she was in fetal distress.  She was only 27 weeks gestation, weighing just over 2lbs.  The next 100 days would be spent in the NICU.  Tests, surgery, diagnoses, specialists, beeping monitors, apneas, good days then terrible ones, the list goes on and on.  As each day passed I heard new medical terminology, I felt emotions I had never thought possible, I was confused and tired and an absolute wreck on this roller-coaster of prematurity and hospitalization.  I just wanted my baby to be okay.  And I continued to hold my breath, afraid to move, afraid to do anything, afraid that something else would go wrong.

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Elizabeth went home on oxygen and an apnea monitor, and had great difficulty feeding and gaining weight.  Every day was a struggle.  Every hour was a struggle.  She wouldn't eat.  With her oral aversion she screamed at the mere sight of a bottle.  Her projectile reflux was non-stop.  She couldn't poop.  She couldn't be comforted or soothed.  We saw specialists for gastroentestinal issues, post-op surgery appointments for her duodenal stenosis correction, geneticists, pulmonologists, cardiologists, opthamologists, developmental pediatricians  ....  I felt like our lives were now ruled by doctor's appointments, diagnoses, and new things to try.  Early Intervention services began.  And through every minute, every second, I held my breath, waiting, too afraid that yet another thing would go wrong.  Some days I just cried.  I cried for the pain my baby was going through, I cried for the journey of parenthood that we expected but never got.  I cried and grieved the perfect baby I would never have.  Some days I didn't know how things would ever turn out right, some days felt more like nightmares than the beauty and treasure a newborn should bring.

 

But somewhere along the way,IMG_0792 we turned a corner.  I can't tell you when that moment was.  But it happened.  So slowly I didn't even notice it.  But when I look at where we were, and where we are now, the differences are staggering.  Elizabeth just turned 3.  She graduated Physical Therapy but still receives Speech Therapy for feeding and Occupational Therapy for sensory issues.  The hole in her heart has closed on its own, which happens in less than 5% of kids with her type of ASD.  She takes 98% of her food by mouth (a complete turnaround from two years ago) and we rarely use her G-tube anymore, and she is gaining weight.  Albeit incredibly slowly, but she is gaining.  Her duodenal stenosis and anterior anus were surgically corrected and although she still has some GI issues, for the most part she is fine.  She also has ear tubes and had her adenoids removed.  The RSV shots helped her during her first two winters home.  She attends daycare 3 days a week.  My two pound miracle who's spent 116 days in the hospital, had 4 surgeries, has been on countess medications, who I watched turn blue and de-stat in front of my eyes multiple times .... is now a happy, healthy, thriving, witty, devious, silly, charming, giggling three year old.  There are days that the first two years of her life seem like a thousand years ago, just a distant memory, a blur in time.  To see how far she has come is nothing short of a true miracle.  It sometimes seems impossible that the fragile creature in the NICU 3 years ago now says to me "I love you so much Mommy."

 

Yet still, I hold my breath.  Instead of being able to let go of the past and be happy for where we are now, I cling to her diagnoses and specialists and problems, there is a desperation in the comfort and security I find there.  For so long that was the only life we knIMG_1216ew, that's what I got used to, it was the new normal.  I am now faced with the challenge of accepting that my daughter is fairly "normal".  She still has issues and challenges, but it's a far cry from where we began on this journey.  For some reason I am not able to let go of her being a special needs child, of being a preemie with health issues, of counting MLs and ounces and calories, of worrying every second of the day if she was having an apnea or bradycardia and waiting to hear the beep of the monitor, hoping she wasn't aspirating on reflux yet again, of having this fragile child who can't survive without me.  But that's not our reality any longer.  I am so terrified and afraid that this beautiful ending will somehow go wrong.  I hold my breath and wait ... and wait ... and wait for the other shoe to drop.  Perhaps it never will.  Probably it never will.  But I live terrified each day that something's going to go wrong.  I still look at her and see the medically fragile preemie from 3 years ago, instead of the strong child she has grown into.  It's not fair to her for me to live like this.  When do I let go of this breath I have held since I saw the look on that doctor's face?  How long will I be waiting to exhale?  At what point do I come to terms with the fact that she's going to be okay, she's not going to die?  When do I accept the good that I have and stop focusing on the bad that is no longer?

 

The child I see in front of me today astonishes and amazes me.  She is my world.  She needs a mother who can live in the present and let go of the past.  Even though our reality is so much easier and more beautiful, the past is still my comfort zone, difficult as it was.  It's what I know, it's where I feel safe.  Change is monumentally hard for me.  I think that moving forward each day will be a continual fight for me to accept the amazing reality of the wonderful present, to let go of the complicated and difficult past .... to exhale this breath I have held for three long years ... and to watch the beauty of my child's existence unfold before my eyes.

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