Monday, March 11, 2013

sacred place

On Sunday Virginia and I made a trip up to Yale for the sole purpose of delivering Lily Wraps and Books  to the NICU and seeing our wonderful nurses.  We often stop by the NICU after specialist appointments at the hospital but it was a treat to visit this time without any overshadowing appointment anxiety.  We were honored to deliver 15 lily wraps and over 20 books on behalf of the overwhelming support that we received for our March of Dimes team during our 1 year homecoming anniversary.  We know that these donations are going to make a difference on a very intimate level for many families that walk through those sacred doors to the NICU, a place that only those affected can really understand.  We also know that that the donations to the March of Dimes are making a difference on a much larger level in the hopes that less people have to join that "club" and know what happens behind those sacred doors.   Thank you to all of you that supported this effort.  We will be doing this again soon.  

April of Lily's Amazing Grace creates such a beautiful thing for families of babies that go to heaven much too soon.  

We were thrilled that some of our absolute favorite nurses were working on Sunday.  These 3 women in particular played such important roles in those very early and very critical days.   They each spent alot of critical time with our little Ginny and without their attention to detail we may have had a very different outcome.   These ladies, as well as our other primaries, got to KNOW Ginny and all her 1.5 lb antics.   

Our stubborn girl gave Chris (on the right) a nearly 3.5 hour marathon to get a PICC line in.  And then another marathon for a PICC line revision and lumbar puncture.  Chris always checked in on Ginny and offered so much valuable advice and support throughout our NICU stay.  She was my go to person for questions on everything from vent settings to breastfeeding.  

Anne (on the left) was Virginia's weekend warrior.   Anne works Friday, Saturday and Sunday every weekend and provides so much consistency in what can often can become the blackhole of attending pass-off.  (Do the weekends lack productivity at other NICUs for the 'critically stable' kids??)   She believed in Ginny, she fought hard for her in rounds, she pushed the attendings for consistency and a plan when we were going on 7+ weeks on the vent, and she listened to us.  Anne also provided the best advice to me, something I will never forget.   During a particularly difficult and scary week during month 3 of Virginia's stay Anne pulled me to the side and told me "Alyssa, you are her mother, you know her better than any of us.  You are the one that will always know her best and you must trust what you know."    Her words released me from my own chains and empowered me to advocate on a whole new level for Virginia.  

Lastly, Nancy  (in the middle) was Virginia's daytime primary nurse in the ICN room.  Nancy was the first person I saw in the NICU on Virginia's birthday and the last person I said goodbye to on discharge day.   Nancy is not only an amazing technically skilled nurse but also has that instinct.  She really knows her babies, she knows their personalities and she knows their tendencies.  She really knew Virginia and I truly believe that we avoided so many problems because of Nancy's intuition.  I always said that Virginia gave Nancy and Amy (her night primary) so much trouble, but in hindsight I realize that alot of that can be attributed to them catching things before they escalated into something much more serious.  
Much like Nancy knew Virginia, she knew us too.  She understood us; She knew how to handle us in such a gentle yet realistic way.  She gives the best hugs, has the most caring words, has the patience of a saint and a hugely generous heart.  She also knew that I didn't like things sugar-coated and respected that.  I will be eternally grateful for her presence in our lives.  

These visits back to the NICU get more and more gratifying as we get further away from our time there.  The emotional healing that takes place when I return to that sacred place is unparalleled.  These are the days that I dreamt of in the fall of 2011.  I'm not sure I ever dreamt that they could look this good though.  

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