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May 12-18

This Week

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We are happy to announce that we are finally back in Richmond permanently. A lot has happened since we were released from the hospital on 9/12, including an emergency rush back to the hospital when some of Garland's equipment wasn't working properly. There is too much to cover about the last couple weeks, but we had our last appt. in Philly on Monday and Tuesday. We don't have to go back for three months! Garland still has the nasal gravity tube in order to make sure she gains enough nutrition during each feed. She is very small, in the 1st and 2nd percentile for height and weight,(for kids ages 0-2) but with time we are confident she will close the gap.

When we first found out about Garland's birth defect we were devastated. Before her initial evaluations at VCU we read online that babies with a CDH have a 50/50 survival rate. While we were thankful that the initial test feedback from VCU showed a higher survival rate we were still scared. The fact that we had a week to choose whether to have her treated locally at VCU or relocate to Philly added tremendous pressure to an already stressful situation. 

Genevieve and I decided that if we lost Garland we would rather walk away knowing we took her to the best place in the country, even if that meant making it harder on us in the short term. While this made sense intellectually,  neither of us could have known how hard the short term would end up being. Your gifts, notes, and prayers, were crucial to lighten our load during a very difficult time. 

We were shocked at how fast Garland improved post birth. The surgeon that worked on our case is one of the best in the country for CDH repair and treatment. She told us at the outset that if everything went perfectly Garland would be in the hospital for a minimum of 4 weeks. Garland actually beat that timeline by several days sparking the surgeon to say that she is going to use Garland's case as the new "rockstar" timeline. 

In one of our initial Ultrasound appts at CHOP before Garland was born, the Harvard Medical School Radiologist couldn't get a clear reading. The Dr. said Garland kept moving around and wouldn't comply with what she needed Garland to do to obtain a clear picture. After about an hour of trying, the Radiologist exclaimed: "Your daughter is willful!". Turns out, that Doctor was right-a trait she clearly inherited from her mother. 

The amount of support we received has been tremendously meaningful. The overwhelmingly kind response was inspiring and reminds both Genevieve and me of the value of community and how lucky we are to have such a wonderful network of family and friends. This will be our last update so it was important to both of us to express our sincere thanks: thank you so much for your support!!

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