Sienna ’s Story

Site created on October 19, 2022

Welcome to our CaringBridge website for our sweet heart warrior, Sienna.

As many of you know it has been quite the journey with our little heart warrior! We wanted to create this space to share her story and updates for everyone. Our journey started when we first received Sienna‘s diagnosis of Trisomy 21 at 14 weeks gestation and the ride has only become “wilder” since then. Shortly after finding out about her diagnosis we found out that she would be born with a congenital heart defect (as ~50% of children with DS are) , a complete balanced AVSD and PDA, and would require open-heart surgery between 2 to 4 months of age in order to save her life. Fast forward to today and here we are THREE open heart surgeries later and a mitral valve replacement.

We appreciate your support and words of hope and encouragement. Thank you for visiting. (CaringBridge is a non profit organization and will ask for donations that go to them , not us!) If you’d like to donate to us, Cassandra’s mom organized a gofundme for Sienna to help offset the costs of the medical bills and expenses. Below is the link. Thank you so much.💕

https://gofund.me/a2aedea2

Newest Update

Journal entry by Cassandra Caines

Hello friends + family, 
We have been enjoying home! Sienna goes to story time at the children’s library on Friday when she can, which has been great for her as she hasn’t really had many opportunities to socialize around other children. She will also begin a music class at the end of the month😊 We have been going on walks, going to the playground and just enjoying being home (on top of all her many therapies and doctors appointments). 

Sienna had a follow up cardiology appointment yesterday since being discharged and her echocardiogram looks good! No changes, the valve is still functioning well and all looks great 🙏🏽 She will continue to have frequent cardiology appointments and echo’s the next several weeks to ensure that no clots are beginning to form since she transitioned to a different kind of blood thinner injection  ( lovenox) now on a prophylactic dose. 

We can’t believe our girl is about to turn 22 months! 
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