July 11, 2009
People ask me this question all the time: If I knew then what I know now about all the ramifications of Nicholas’s birth and subsequent journey — would I still make the same decision to keep him on this planet. Before I answer that question, let me tell you where I’ve been since Nicholas was born and the airing of the documentary little man on Showtime, chronicling his premature birth (born 100 days too early at 1 pound) and now, late summer, 2009 — seven years later.
It saddens me to report that my partner of 11 years, Gwen, decided she could no longer be part of our journey, which admittedly was rife with chaos, medical emergencies, nurses in our home, and running a mini-hospital. But I must confess, I was dumb-struck. Hadn’t we just weathered the worst of this and made it to the other side? Didn’t the documentary I had labored over for three years, depleting my now thoroughly exhausted supplies of energy, prove that we had created our very own happy ending? Hadn’t she said we were in it forever, for good or for bad?
I guess I wasn’t paying attention. Because as Nicholas turned five, and had finally gotten off the dreaded central IV line, off the dangerous blood thinners for all his clots, and was now attending real school, I suppose I didn’t want to acknowledge that Gwen had checked out long ago. Further she resented that I had destroyed the perfect picture she had in her head of her version of a happy ending, by bringing Nicholas into our lives in the first place.
Gwen not only divorced me – but also our son — and the litigation was vicious. She was done being his parent. Two years and hundreds of thousands of dollars later, Gwen and I settled our differences. I was to retain full legal and physical custody of our son, Nicholas, and we would share joint custody of our daughter, Gabrielle. I’m happy to report Justice was served in Nicholas’s case and the legal system has taken good care of him. But through it all, I cried many tears watching a union which had made it through the devastation of a severely premature birth and all its insane aftermath, create an even worse devastation in the destruction of our family. I guess a disabled child inside a marriage can wreak the most extreme and violent reactions. And in time I had to acknowledge my own willfullness — in keeping Nicholas with us — as being the primary reason for the failure of our marriage, not to mention that when a parent’s focus is on their disabled child, it drains the marriage of its lifeforce. I believe Gwen and I have gone on to forgive one another and try to maintain a wonderful partnership in raising our daughter, Gabrielle.
But at the end of the day, between the exorbitant legal fees, and taking my eye off the ball in the economic down turn as I focused on Nicholas’ never-ending medical issues during the whole stock market crash, and even after little man debuted, I had lost pretty much everything I’d ever worked for.
Last October, during one particularly brutal night, I cried for hours missing my daughter during a weekend she was with Gwen, trying to square custody visitation with the inalienable right every mother has to be with their child 100% of the time. I was keenly aware that as a writer/director I had no “real” saleable skills, that I never so much as wanted to consider a future relationship after the brutal beating I had just gone through, and besides, who would want this tired ol’ mare now a skip and a jump away from 50. What was I going to do? If anything happened to me, no one – not even my family was willing to step up the plate and care for Nicholas. I hit the bottom of rock bottom.
Things were as bleak and awful as they could be. Nicholas had a terrible time adjusting to the changes – and couldn’t understand the new house we were living in or that his sister was absent half the time. Gabrielle couldn’t understand why — if I really wanted to keep the family together, that “you don’t just make that happen, Mommy CoCo!” She also could not grasp why her brother wasn’t going back and forth with her between both houses. I was trying to figure out how in the hell I was going to make a living as a frumpy disheveled mom in the land of eternally young and hip.
A couple of weeks later of feeling woefully sorry for myself, I got an email telling me that Preemie Magazine had folded. I got out of my own head for a moment and realized how devastating this was for preemie community. The magazine was not only the most amazing resource for our community, but the smartly laid out and gorgeous magazine was the ONLY one-stop shopping for the universe that preemie parents encounter on a daily basis. Further, founder Deb Discenza and her wonderful staff had always been so amazingly supportive of little man. I decided to get in touch with her to tell her how sorry I was about Preemie Magazine and lament the frustrations we were both sharing. Deb’s amazing and a force of nature and was still going strong helping the community with her work at MOST (Moms of SuperTwins) and PreemieCare.org. We ended up yattering on the phone for almost two hours.
That single phone discussion changed many things for me. Deb and I continued to chat (always endlessly) and discovered beyond our insane dedication to our preemie kids, that we both still desired to work inside the community and to create much needed products for the community we know so well. We quickly realized that our working styles suited each other perfectly, that our intense dual-Scorpio drive would be just the engine we needed to propel this vision forward. And our mutual admiration society would be the harmony we needed to bless the creation of our new ventures: PreemieWorld.com which will become the go-to spot for all things preemie along with our blogs where Deb and I can discuss all the many issues we personally encounter daily as mothers of premature infants.
The Preemie Parents Survival Guide to the NICU – How to Maintain Your Sanity & Create a New Normal — was the brain child of Deb’s and my many discussions. We so badly wanted to provide what we had both wished fervently we had during our stay at the NICU: another parent, helping us through the insane journey of being in the NICU, holding our hands. That is what The Surivival Guide is: holding your hand through this same journey.
PreemieWorld.com will also host the little man DVD and soundtrack as well as the celebrated NICU Preemie Tag. Our Preemie Power Newsletters will launch in the next couple of months and will be filled with articles, discussion, forums.
You know the ol’ adage, when one door closes. In this case, it could never be more true. Deb and I are thrilled to present PreemieWorld.com to all of you, and especially those of you who have written or emailed us to share your own extraordinary Preemie journeys. We are so excited to reconnect with all of you and to have all of us share the joy, heartaches, stresses, and triumphs that are cornerstones of the uniquely fascinating journey of the Preemie Parent.
And the answer to the question I posed above? Nicholas is, and always will be, the single most generous spirit I’ve ever encountered. At 7 he is finally speaking – not just words, but purposeful communication! Yes it’s still a mix of Nicholese and some awesome new words; (“banana, rectangle, no pinching-just kisses” ). He sings incessantly… He reminds me daily not only to breathe life in–in the moment—but to do so with calm, grace and the simple purpose of being. His gentle smile and guttural chuckle are infectious and I cannot NOT smile when I’m with him. Gabrielle still remains my heart – Nicholas my soul.
So the answer is, yes, even if I knew then, what I know now — I would do it all over again, in exactly the same way, in a New York second.
And, now, Nicholas, Gabrielle and I look forward to sharing the remainder of this journey with all of you…
July 11, 2009
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.”