Twelve years ago this summer, I was six months pregnant with my first child. After a military aviation career, completing master degree, accepting a global tech marketing position and moving back to the SF Bay area where we first met, my hubby and I decided that after nine years of marriage and global travel, it was time to “see what happens.”
What happened was “premature rupture of the membranes (PROM),” a nice medical term for baby’s protective water sac breaking for no apparent reason, at 21 weeks gestation. Worse, as a first-time mommy wannabe, I didn’t even know it happened.
What followed at my next check up was a series of exams and finally the news: we should begin to prepare for the “high degree of probability that your baby will roll onto its umbilical cord, cut off its oxygen supply and die.” We were told to prepare for the worst. We returned home, cried, called our parents to tell them the sad news and waited for our baby to die inside me.
But then I called one of my best friends from my college days at Berkeley, medical doctor Arnaldo Moreno. He said these words, “Just because the doctor tells you the most likely prognosis does not mean that is what is going to happen.”
Speaking these words of logic, to me with a logical brain, gave me the first hope that maybe the worst could be avoided, somehow. I called my doctor and said, “So what if the baby doesn’t die in the next few days? What if it lives to 24 weeks (the point of fetal viability)? What if I somehow manage to stay pregnant for three and a half more weeks?”
I was told that it was 80% likely I would go into labor within the week of the water breaking and lose the extremely tiny baby. If I could somehow miraculously stay pregnant until the first day of week 24, the medical team would have to admit me to the hospital and attempt to resuscitate the baby when he/she was born. So that’s what I decided I would do, stay pregnant, not mourn.
My mother flew to be at my side. We invited the Catholic priest from our church to our home to pray together for my baby’s life. At one minute past midnight on September 11, 2001, my hubby and I arrived at the hospital and I declared I was there to be admitted so they could save my baby. Six hours later I watched our nation suffer terrorist attacks from my hospital bed, taking steroid shots to accelerate the baby’s lung development and pondered how life suddenly became so strange and difficult. I also thanked God that I didn’t already have a child at home, asking questions about the horrors on the TV. And I waited and prayed to stay pregnant another hour, another day, another week, until the now obvious fibroids inside my uterus tricked my body into thinking I was 40 weeks pregnant and ready for labor, when I was really only 25 ½ weeks along with this already tenacious child.
where’s the 10 inch baby?
She was born on a hot September night by near emergency C-section weighing 505 grams (5 grams over minimum resuscitation weight I was told), a whopping one pound two ounces. I describe that weight as a box of butter and a paper clip. I saw the red, frog-sized creature in the incubator for a few seconds through my anesthesia-induced haze, just before they whisked her away by ambulance to another hospital in other city. She went to a hospital in Berkeley (how apropos for being the first child of two Cal Berkeley alums).
Her 137 – day stay in the Neonatal Intensive Care Unit is chronicled here, the website and guest book we created as our techie parents coping mechanism. We used it to chronicle what happened each difficult week, each surgery, each milestone, each piece of sad news; we used it to update our friends and family who wanted updates from two parents too emotionally and physically exhausted to provide them any other way.
But that’s not why I write today. Today, I look back on all that hell, the fifty pounds of stress I gained during that time, the nights she almost died, the Learjet medevac flight to Michigan for eye surgeries in the dead of winter, the insurance company battles [“Your daughter has used up her lifetime maximum benefits of one million dollars already,” and my response “But she’s not even home from the hospital yet!”]
I look back on all of those trials we survived today and cry. Why? Because one week, my little girl Milagro, with her sense of sight lost to detached retinas caused by her prematurity and her sense of hearing compromised too, this little fighter last week stood up in front of her elementary school as one of three children selected to speak at her 5th grade advancement ceremony.
Her speech that she wrote in Braille followed her two peers who also recapped their elementary school years. These are the words my daughter wrote and spoke that brought our community to tears:
photo by Debbie Smith-Dommaschk
Title: Vannoy is a Rose
“To me a rose means something is wonderful.
Vannoy is a rose because I get to eat cream of wheat for a snack. I get to play the piano when I finish my work.
Teacher Debbie is a rose because she lets me pick out tasty oranges when we go to the grocery store on our community outings. She also taught me how to tie my shoes.
Writing and reading on my Braille Note is a rose. My Braille Note is a tool for people who cannot see.
Mr. Steve is a fabulous rose because he plays the guitar.
There were many roses in Room 9. I remember playing the numbers game with Mr. Matt and Miss Rolene. I also had so much fun playing the Cougarcat piano and singing the “Good Morning Song” with Teacher Steve.
A recess rose is the game-time swing. Buddy reading with my friends was a rose every day. I loved the Cougarthon because I got to eat cotton candy. The water tent with the misters was fabulous.
Singing I’ve Got an Autumnish Feeling at the Talent Show was a dozen roses.
There are so many people at Vannoy who are roses. Miss Tara helped me practice my choir songs.
Miss Lori taught me how to use my cane.
Both Miss Lauras taught me how to Braille.
Miss Jody taught me how to speak clearly.
Miss Kym has helped me be independent. She also taught me how to hula hoop!
Now I hope you see why Vannoy is a rose.”
Like many momtrepreneurs can relate, my life moves alarmingly fast these days. My hubby and I went on to have two more children in the four years that followed this near tragedy. I’m running a publishing and marketing business, traveling as a speaker and launching a children’s book next month, in addition of course to enjoying summertime fun with my three kids. So today I forced myself to stop…just stop. I forced myself to reflect as I didn’t have time to do last week when my first-born child gave her speech, her sister wrapped up third grade and little brother graduated from Kindergarten…too much of a blur.
Today I’m stopping and processing the wonder of what we experienced that day as my first child completed elementary school. I’m feeling tremendously grateful once again for my daughter’s life that was nearly lost 12 years ago in that scary first pregnancy. I’m grateful that we survived those five surgeries before she came home, the oxygen bottles, the apnea monitor, the medications, the daily stress, all of it.
Milagro and members of her educational team
Today I’m grateful for what she teaches people who meet her about what’s possible when love triumphs and when a mother and father forcefully advocate for their child’s educational rights. I’m grateful for the many devoted teachers, speech therapists, mobility instructors, Braille teachers, adaptive PE teachers, audiologists, program managers who have come together all these years to provide a piece of expertise to educate a child that several people early on declared would not be teachable.
I thank her for proving those naysayers wrong.
Today I pause and honor the miracle in my life, the miracle of my little girl, my Milagro. I am truly, truly blessed to have her in my life and share this brief recap of her story with you today. Let her remind us of the possibilities that exist for all of us, if only we truly understand (as Hillary Clinton famously informed us), that it really does take a village.
Attending the National Federation of the Blind Convention
Milagro on trombone at school talent show