Journal entry by Erica Webb

Doing things a bit different this time around and decided to add some desperately needed fun and joy into this pregnancy.  Turned our annual “pizza and beer for Santa” Christmas Eve party into a surprise gender reveal and repeated the fun for another gang on Christmas Day 🎄🎄🎄#greenforboy #redforgirl

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Journal entry by Erica Webb

With this pregnancy, we have dreamed about all of the exciting things to come for our second little one.  More than anything, we have hoped for a happy and healthy baby.  Unfortunately, we recently learned that our sweet baby has tachycardia and a congenital heart defect, tetralogy of fallot, that will require open heart surgery within months of being born.  With this news, our dreams have changed for this baby.  While we still hope they are happy and healthy, with many exciting things to come, we now dream more than anything that they are a strong, brave, little fighter. That they are determined, fierce, and courageous.  That they know they are loved beyond measure and that they have parents, family, and friends that will fight endlessly for them.  That our hearts beat for them always ❤️❤️ We’ve been struggling with whether to share this news publicly or not, but at the end of the day figure the more prayers there are out there for our little one the better.  This holiday season we are thankful for your love and support, the blessing of our amazing kiddo, our sweet baby on the way, and the strength and knowledge to protect and fight for our family.  May we all find joy in the celebrations of this holiday season and cherish the ones we love ❤️

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Millie’s Story

Site created on February 19, 2019

The day before Thanksgiving we got the news at our 19 week anatomy scan that our sweet baby had a congenital heart defect, tetralogy of fallot, that would require surgery after birth.  Because there is not a pediatric cardiac surgeon in Buffalo, NY, that meant we would need to deliver outside of Buffalo to make sure that we were in capable hands should our baby need immediate surgery.   We did tons of research and decided that Boston Children’s was the best place for us to go.  Not only is their pediatric cardiology program rated 2nd in the country, but we also have friends and family there as a support system. 

Since that day, a ton has changed.  We now know that we are expecting a sweet baby GIRL and have named her Millie Grace Luthe Webb.  Millie is a German name that means “strong and determined”, which we know our girl will be.  We have traveled to Boston to meet our care team and have as much of a plan as we can at this point.  We have learned that the Boston Marathon is the day before our due date (awesome timing little lady).  And, we have found ourselves changed in so many ways— emotionally, intellectually, spiritually, socially, as spouses, and as parents. 

With all we have learned, there is still so much uncertainty.  We don’t know whether Millie will need immediate surgery or if it will be able to wait a few months — it will all depend on how she does after birth.  We don’t know how long we will need to stay in Boston. We don’t know what other challenges may come along with this diagnosis. Only time will tell, but we are trying to prepare for all possibilities.

Because there is still so much to learn, we wanted to create a space to update everyone of how Millie is doing as we have more information.  We so appreciate everyone’s well-wishes and prayers and hope to be sharing at least mostly positive news here as time goes on ❤️