Friday, November 21, 2014

Prematurity Awareness Month

November is Prematurity Awareness month, and as we get further away from the NICU stay and the baby days, the effects of the little dragons' prematurity are less and less. 

However, they will be impacted by their premature birth at 27 weeks, weighing a mere 770 grams. They were classified as micro-preemies, extremely low birth weight deliveries- and with that came a 75% chance of surviving to their first birthday, solely due to prematurity and without even taking into consideration our pregnancy problems due to pProm. 

We definitely beat the odds, but not without a bunch of scars to show the world exactly what kind of a war zone the NICU is. We did not come out unscathed, but we are out and doing our best to stay out of trouble. 

No family should go through a premature birth, though 1 in 9 US babies are born before 37 weeks; over 500,000 births annually. pProm, our reason for prematurity, affects 150,000 pregnancies and is a leading cause of premature birth. There are pProm babies and other preemie births pushing the limits of viability every single day in this country. We've seen viability inch from 24 weeks and 500 grams to 23 weeks, 22, and now 21 weeks and 4 days - with surviving babies. The true quality of life of these extremely premature babies and the impact on their families have yet to be seen or understood - and often won't be for years down the road. The economic, psychological, and emotional costs associated with prematurity are far greater than often the system is equipped to handle. Whole families can fracture under the pressure of prematurity and the expectations after the NICU. The crisis of post-partum depression for spouses and PTSD is very real. These are secondary and tertiary consequences of a premature birth that need to be addressed.  

Prematurity doesn't end when a baby goes home, or when they turn 2. It's a constant battle with PTSD, with weight gain, meeting milestones, hospitalizations and therapy. Prematurity can feel like living on a sand dune, with the winds whipping all around you; eventually things might calm down so that you can make small but seemingly insignificant progress towards the next goal. 

With all of these doom & gloom statistics and challenges are the positives- preemies are the most amazing fighters and demonstrate an unwavering will to live and thrive. They are truly inspiring to be around. If nothing else, going through the journey of prematurity will create a vast appreciation for the amazing ways in which the human body functions and is built to overcome adversity. 

We are proud to be the parents of preemies and we definitely wouldn't have it any other way. This was our journey. We also are diligently working to help other families through pProm, aiming to extend latency and increase awareness of neonatal treatments that can dramatically improve outcomes for babies. 

So, the next time you see a can of food- remember that Maisie and James weighed a mere 27 ounces or 770 grams when born. Large cans of vegetables weigh more. Their heads were the size of baseballs, and they were as long as the serving spoon in your kitchen. Their handprints were the size of a penny and their footprints the size of a black olive. It's hard to gain perspective of how small 1lb 11oz really is. Even I forget. 

1 comment:

  1. You and these beautiful children are an inspiration to so many. I know without you my journey so far through pprom would have been impossible. You have taught me so much amd boosted me on days when I felt like giving up. Thank u for sharing your stories and advice. Xxx