Deb’s Thoughts: Preemie Becky’s Impending 6th Birthday

Big Girl Becky

Big Girl Becky

Preemie Becky is growing up.  This coming September Becky will be six years old.  It will be a day of joy, a huge milestone for our little girl and our family.  It was also a day of reflection on her early birth, and on our amazing journey since that time.  Everything seems to have gone by in a blur yet Becky’s Neonatal Intensive Care Stay (NICU) stay will forever be clear in my memory.

In my case everything happened super fast and I had no time to prepare myself physically or emotionally.   The outing an hour outside of town, my water breaking in the car and my sheepishly thinking I had an “accident” and discovered otherwise in a grocery store bathroom. The harried call to my OB on call at the hospital who didn’t believe I was truly in labor (uh-huh) and the frantic drive to the hospital amidst a crazy traffic jam (why now, God?).  And then the 30 hours of bedrest in the labor and delivery room, my body filled with all sorts of chemicals that truly left me sloppy, overly warm and feeling just plain foggy-stupid. Then fast forward with the shock of more contractions and all sorts of chaos ensuing.  No one was telling me anything and then all of a sudden when I announced loudly that the pain had officially hit a 10 my husband rushed out of the room and in came the nurse and a whole bunch of people. The nurse bluntly said, “You are delivering tonight.”  No epidural despite my plea and a five second Lamaze lesson prepared me for the biggest and scariest moment of my life.  Ten minutes later, in front of a large medical team, my daughter Becky was born. She was 2 lbs. 15.5 oz.  My daughter cried with a tiny kitten-like cry and was held up to me for a second and then was whisked out of the room to the NICU.  All of a sudden, at 30-weeks of pregnancy, I was now Mom.

A little while later, still groggy from the drugs and the whole episode I found myself being wheeled into the NICU to see my daughter on a warming table. She was hooked up to all sorts of stuff and crying and I heard machines beeping.  I was shattered as I was then promptly zipped back to my private room and told to get some sleep.  Who could sleep after all of that drama and that introduction to the NICU?  I was distressed beyond belief but the exhaustion took over.  I prayed to God and to my new daughter’s namesake to take care of her that night.  It was all I could do because I could do no more.  I was spent.

Little did I know what lay ahead.  My life became a huge juggling act of going back to work a week later, pumping breast milk every two hours, and visiting Becky in the NICU after work.  The rest of life basically went by the wayside.  We sent out a message to family and friends announcing the early birth and asked them to leave us alone, that we were dealing with a lot and needed time to focus on our daughter.  Our whole world had changed and I was reeling from the trauma and the questions pulsing through me.  What had I done wrong?  What was to become of our little girl?  Would she live?  Would she be able to walk, talk and eventually lead a normal life?  Doctors and nurses were clear that she was doing well at the start but warned us of the “rollercoaster.”  I was mindful of this the first time I held Becky who felt as light as a feather.  My mind kept sending silent messages to her, “Stay here, Becky.  Stay here and be heavy.  Don’t go.”

Not long after the rollercoaster began its course with all sorts of breathing and heart rate issues, PDA concerns along with other heart defects, a nasty case of GERD and Jaundice.  Eating was a success post-feeding tube then a problem.  Weight went up and then dipped and went back up.  Tests and more tests to rule out any residual issues.  Add in medications, an occupational therapist to review her muscle tone and more tests.  All I could do was visit and pump breast milk.  In many ways I felt less like a mother and more like a helpful cow.  Stress catapulted as Hurricane Isabel hit our area and created havoc and I ended up in the ER myself due to excessive postpartum bleeding.  I felt like I was in a nightmare that would never end.

Kangaroo Care ended up being my biggest success and the one thing that I found I could do that no one else could.  With that one action felt empowered, but I had to ask the nurses for it.  Who is the Mom here?  I felt like a sidekick to the team of nurses hovering over my daughter.

Becky came home almost 6 weeks later tethered to a monitor and an oxygen tank and with a list of medications and a team of specialists. The nursery wasn’t even near complete, but I was thankful we had a crib ready as I started my short maternity leave. Again I felt less like Mom and now more like Becky’s Personal Assistant and Head Nurse as I worked in calls for appointments and program enrollments, refills for medications, visits from home health care nurses and medical equipment staff in between Becky’s feedings, changes and overall care and my pumping schedule.  And when I had a spare moment I would start arguing with my insurance company for what would be the beginning of a year and a half fight.  Five days in, Becky re-admitted back in the hospital due to a weight dip because of serious feeding issues. This is not how I pictured motherhood, how I wanted life to be for our family and most importantly for Becky. The word failure doesn’t even describe how I felt.

I reached out locally for support and got it in the form of a preemie support group, Preemies Today.  Talking to other parents, suddenly everything was normal so to speak. It did not completely do away with the stress, but made things bearable.  I promised myself that when I was ready that I would reach and help other preemie parents.  That day came sooner than I expected.

In early 2004 I left my job and launched Preemie Magazine, a free print publication for parents and professionals that care for premature babies from birth into the school years. The magazine gained great success in the community and had a huge impact on the lives of millions.  Sadly the magazine folded in mid-2007 due to a lack of needed investment but to this day helps families with its back issues housed at NICUs nationwide.

But I knew my work within this community was far from done.   In the last year I started writing a column for the Neonatal Network journal and joined the non-profit PreemieCare as their Assistant Chairperson and as this company started, switched to their Director of Partnership for both PreemieCare and their parent organization, Mothers of Supertwins (MOST).  Then an idea sparked for a book and I connected Nicole Conn, Director of “little man” and Mother to Nicholas a micro-preemie.  I recall vividly my first view of the “little man” DVD and the numerous tissues I worked through in that sitting.  Nicole’s vision of the NICU and the preemie experience was told in spades by that one film and every person I know that has seen it has said the same if not more.  It is the movie of our times and of our families.  It symbolizes so much that we are unable to convey to friends and family during and after the NICU.  It is the Preemie World.  Both of us drained by our dramas over the last year plus, we spent the next two hours talking catching up and talking about our plans for the future. And so PreemieWorld with a new vision and new plan was born.

I am thrilled to be a part of this venture and to continue my mission to help families alongside Nicole Conn.  As the saying goes, “As one door closes, another one opens -somewhere.”

Respectfully,

Deb Discenza

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