Saturday, May 17, 2014

from the tiniest acorn grows the mighty oak

Last year there was an incredible video that went viral in the prematurity community and beyond.  Nearly 7 minutes of the beautiful and painful story of little Ward Miles captured the essence of the world of the NICU.  Perhaps the most poignant is the first 2 minutes.  There are no words and no music, simply the gentle hum of oxygen that percolates through all NICUs and the beautiful choreography of a mother getting to hold her precious tiny son for the first time.  It is a moment perfectly captured and a moment that all of us that have spent time in the NICU can relate to.  Whether it took a few hours to hold your baby for the first time or many weeks, the moment that you are able to embrace and reconnect with your ill child is one of immense emotions.  The raw emotions of that moment are typically at a time where outcomes, good or bad, are completely unknown.  The 'realness' of these moments in the Miles' video are why it was shared over and over again.  It is why I shared it with my family and friends- for the first time I was able to convey the reality of the journey despite it not being my own.  

The video goes on to capture those unexplainable moments, those moments that previously you would only understand if you stepped behind the sacred doors of the NICU.  The twitchiness of a premature baby due to their immature immune system, the bags of TPN, The cheekiness of a baby who has finally hit 2.5ish pounds, the look of a mom peeking through the plastic walls of the isolette, and finally the ritual of Lindsay tucking in a more alert baby Ward before saying goodnight.  Another night for her to head home without her baby.  

If you haven't watched it, you need to.  If you are struggling with  helping friends and family understand what you are going or have gone through, share this with them.

The Miles family is now using their reach to support Graham's Foundation, an organization that has touched and guided so many of us from the prematurity community.  Click here to see an update from the them and learn all about the amazing tshirt/sweatshirt campaign that they have launched. 

Please consider supporting Graham's Foundation by purchasing an awesome tshirt or sweatshirt at .  

"from the tiniest acorn grows the mighty oak"  Ain't that the truth!  

Thursday, May 1, 2014

This Club - Parents of Preemies Day Post

This Club
So you are a member too?
I know you never wanted to join.  You were probably devastated when you joined us.  You had no choice, no opt out for membership, no unsubscribe. 

There are no member cards or secret hand shakes, only our own language and abbreviations that immediately bind us as members.  PDA, PIP, PEEP, CPAP, NEC, BPD, TPN, and ROP all roll off your tongue. Just saying the letters may trigger PTSD.  You can count in cc's and can easily convert grams to ounces.  You have willfully pleaded for O sats to go up, heart pressures to go down and blood gases to stabilize.  

You have had a crash course in neonatology and semesters in cardiology, pulmonology, nephrology, gastroenterology and early intervention.  This is knowledge that you never knew you would need, but have embraced it in order to be a better advocate for your child. 

You know simultaneous joy and heartbreak.  You have felt bitter and angry.  You know that unique torture of leaving your child each night.  You know the immense core shaking fear of watching your child straddle the line between life and death.  

Your child may have "caught up."  Your child may never "catch up." Or you may still be waiting for the other shoe to drop.  

Like it or not you are a member of this club.  
As a member you are strong, you are mighty, you are resilient, you are your child's voice, you are their best advocate.  You are forever changed.  

For one day relinquish the fear and guilt.  For (at least) one day celebrate you.  Celebrate the tremendous person that you have become and the tremendous person that has made you who you have become.  Be proud of yourself -  the caregiver, the pseudo MD, the advocate, the home nurse, the expert, the short order cook, and most of all the parent to an amazing preemie.  

Please celebrate your membership in this club that you never wanted to join.
Wishing you a Happy Parents of Preemies Day on May 4th and every day.  

Please support Parents of Preemies Day, a worldwide day of awareness produced by Graham's Foundation. Parents of Preemies Day recognizes the courage and commitment it takes to stay strong and resilient when premature birth turns a family's world upside down. Each year, 13 million babies are born prematurely across the globe and though medical breakthroughs continue to improve outcomes for preemies, experts are only now beginning to understand the intense psychological effects that premature birth has on moms and dads.Here are just some of the ways you can celebrate Parents of Preemie's Day, whether you're a preemie parent or someone who cares about a family with a preemie: 
  • Check to find out if there is an event happening in your area and if so, register. May 4th is going to be a great time!

  • Share your family's story on the 

  • Connect with other parents of preemies at the next #ParentsofPreemiesDay Twitter chat! Jump into the conversation using hashtag #ParentsofPreemiesDay to talk about how moms and dads can celebrate being parents of preemies.

  • Bloggers, visit the 
    Parents of Preemies Day website and grab a badge for your sidebar – then create a Parents of Preemies Day post to tell the world why you're proud to be a preemie mom or dad. Email a link to your post to christa @ and we'll post it on the website!

  • Visit the