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 ❤️

Newest Update

Journal entry by Erica Webb

We had our follow up appointments this morning and all checked out okay!  We have a few things to watch and follow up on, but we were given the okay to come home.  So, we are homeward bound just in time for Thanksgiving 🦃 So many blessings to be grateful for this year, the biggest two pictured here ❤️
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