Tomorrow I’m walking to honor all of my babies.
The healthy, full-term babies, like my Hazel Faye.
The tiniest of tiny babies born on the cusp of viability, like my Daniel Quinn.
The expectant mamas who deserve access to affordable prenatal care and healthy, uncomplicated pregnancies, like my Holly Austa.
And babies just beginning, like the Coming Attraction 2
Tomorrow I will be walking with my own miracle and former March of Dimes Ambassador, Daniel. It’s not too late to support our walk.
I’m sorting through my notes from the recent Perinatal conference that I attended last week so I can attempt to report with a little more eloquence to my co-workers than, “It was great!”. I always leave these events inspired, excited, a little scared shit-less (because the legal presentation always does that to me) and grateful.
Grateful?
Yes, grateful. I’m not just a NICU nurse at these events as they share the latest and greatest data on the care and outcomes from the latest and greatest care. I am also the mom of one the outcomes. A very grateful mom.
One presentation has shown over the last 20+ years dramatic improvements in mortality rates of VLBW (very low birthweight) babies who weigh 1000 grams or more…that’s more than 2 pounds for those like me who sometimes struggle converting weights and measurements. And with the decrease in mortality has followed the significant increase in overall positive outcomes for these babies. Another interesting point was recent studies of 20-something VLBW NICU grads and their eventual outcomes as young adults today is basically interesting historical statistics. They really don’t have much significance to the eventual outcomes of VLBW infants born in the last ten years because the mortality and morbidity rates were grossly higher back when these kids were born.
Yeah, NICU team and families!
Perhaps the reality is indeed that the NICU is not tragic and futile with a guarantee of lifelong, expensive, tragic consequences.
But then again…mortality and morbidity (disability) rates for the ELBW infants (extremely low birthweight), those born between 23-25 weeks on the cusp of viability, barely tipping the scales above 1 pound, has plateaued over the last 20 years. We do amazing things, sometimes almost miraculous things and sometimes we just get lucky
Pausing for a moment to reflect on that little tidbit of data and thinking of tragic sadness that was part of my weekend at work I can’t help but look at this extraordinary former 24 weeker of mine with the most amazing, awesome, epic hair (that he did just comb) and be grateful, truly grateful.
It is with that sense of gratitude that I am marching or walking or perhaps I will be running the 3+ miles with my NICU team in honor of my son’s extraordinary life as well as the many, many lives of the babies I have been privileged to care for over the last 21 years.
You are invited to celebrate Daniel and others too.
Join me.
Sponsor me.
For the first time since Daniel was born I am not walking for the March of Dimes’ March for Babies with Team Daniel. It feels strange that there is not Team Daniel walking this year. Still I know that a little bit of Daniel is there, at least his image and his story is at the walk in Modesto. Along with my co-workers and former patients and their families walking today in Modesto, my heart is with so many other walkers all over the country who are walking in memory of Maddie, especially her parents. Here is their story shared this morning at LA’s March for Babies. Video by way of Rachel.
News circulating tonight in the mom-blogsphere and twitter-land is sad. Beautiful, miraculous Maddie Spohr passed away suddenly today. Following her family’s account over at The Spohrs Are Multiplying I couldn’t help but be enchanted with her amazing eyes (second only to my grand daughter, Hazel’s) and her delightful smile. I identified completely with the trials, tribulations and amazing blessings of life with their preemie because we are living out own life with an amazing preemie. Tonight my heart is sad, so very sad for her family. Please stop by their blog and discover Maddie, if you haven’t already and definitely find it in your heart to make a donation in her memory to the March of Dimes. Not a day goes by where most families of preemies like Maddie and Daniel are reminded just how miraculous they are and how they still are so vulnerable even long after they leave the NICU to “live happily ever after”. Perhaps someday happily ever after will be a reality for micro-preemies and preemies like these rather than a wish, a prayer or a miracle.
It’s so hard to imagine that he once fit into my hand! He found his sign, that the March of Dimes has displayed for the past two years at local events, ran up to is shouting, “Hey, that’s me!”
It was a good day to participate in the March for Babies. But now I am off to soak my self in the hot tub. Daniel, because he is so much younger and resilient after the 3.6 mile walk, is off to a birthday party.
