About Ivy (our journey so far…)

Welcome!

Many of you have followed us over from our Caring Bridge site but some of you might be new to our story, so I shall give a brief rundown of our journey up to now.  If you are not familiar and would like to read the more detailed version, you can check out the CaringBridge site at http://www.caringbridge.org/visit/babygirlmaupin.  This has all the vivid details starting from the time we find out about Ivy’s condition.

During my pregnancy, we found out that our daughter Ivy has a rare chromosome disorder called Trisomy 18, or Edward’s Syndrome.  It is a devastating condition which claims the lives of many babies before they are even born, and most of the rest before they reach one year of age.  Survival greatly depends not only on the severity of symptoms, which are wide-ranging, but also on the ability of the parents to find doctors willing to offer something other than comfort care only.  Many medical professionals still mistakenly believe that babies with this condition are “incompatible with life”, which simply isn’t the case.  Their lives may be shorter than most, and they will have difficulties but, as anyone with a Trisomy child will tell you, every single moment with them is worth having, and they bring indescribable joy to all those whose lives they touch along the way.

We were in the lucky 10% that got to see our little girl born alive and kicking.  On February 25th, 2015, at 9:59am, she was brought into the world, pink and crying her little head off.  We spent 5 days with her in the NICU, and it was very touch-and-go.  When we brought her home on March 1st, we truly did not expect we would have her with us for much longer.  However, Ivy has spent the last 7 months defying the odds and not only living, but thriving.  Yes, she has developmental issues.  Yes, she has health problems, some of which will continue to keep us on edge as long as she is here with us.  This journey we are on is more difficult than I could have imagined, and filled with both immense joy and overwhelming sorrow, often at the same time.  At the root of it all though, Ivy is a fighter, writing her own story, and we are simply here to fight alongside her and help her find the path she is meant to take, loving her unconditionally along the way.

The purpose of this blog is twofold.  Ivy has many (MANY!!) fans, and this serves as an easy way to keep them all updated as to the goings-on.  She’s a very busy girl!  Also, I am finding more and more that I have a desire to reach out to and help those who may be in a similar situation.  As I said, there is so much misinformation out there and such little hope.  I would love to be able to offer both accurate information as well as hope to those who need it.