In May of 2015 our journey with Elodie and with Boston Children's Hospital began. Halfway through the pregnancy an ultrasound revealed what could have been a problem with her heart. We were referred to BCH to confirm. Walking in there that day was nerve wracking to say the least. Their confirmation that Elodie did in fact have a congenital heart defect (Tetralogy of Fallot) that would require open heart surgery in order to survive floored us but only for a short time. From the minute the confirmation was shared with us we had a team...literally sitting in the room with us. Doctors, nurses and even someone taking notes so we could just listen and absorb. When we left a few hours later we knew there was a long and very scary road ahead but we were calm. It was that day, walking out of the hospital that I knew if all went well we would have a lot to be grateful for and I wondered even then how it would be possible to say thank you.
Elodie's development was closely monitored and a research study we took part in revealed another problem (Duodenal Atresia) which was a blockage of her small intestine. Another meeting, another team, another surgery she would need shortly after birth in order to thrive and survive. Our cardiology team was with us every step and meeting with the gastric surgery team and again we knew we were in the best possible place.
Elodie was born August 22 strong enough to wait a few months for her heart surgery. At six days old she had her first life saving surgery to repair her intestines which would allow her to begin regular feeding and grow strong enough to make it through the open heart surgery to repair the Tetralogy of Fallot /large VSD which she would have at 3 months old.
Testing during her first week revealed a spinal cord issue that would require surgical repair within her first year and we were made aware that a follow up gastric surgery would also be required before she turned one. For anyone keeping score, that's four surgeries, two more than we had anticipated before she was born.
Clearly it was a lot to process and it was a tough and scary road at times but there wasn't one second in that time where we ever doubted our doctors or wondered if we were putting our trust in the right people or hospital. How lucky are we to live 25 minutes from the greatest Children's hospital in the world!
Some of the most amazing doctors, nurses and support staff in the world were, and still are part of our support team to this day. Thanks to them we have an amazingly smart, caring and beautiful three year old who brings joy to us everyday as she enjoys life and crushes her milestones.
I've joined the Miles for Miracles team because I believe so strongly in all the amazing things Boston Children's Hospital does for kids:
* The hospital's patient care programs are unusually sensitive to what sick and injured children and their families really need.
* Researchers regularly make amazing discoveries that change children's lives.
* Boston Children's welcomes kids whose families can't afford health care--more than any other hospital in Massachusetts.
* Community programs makes a point of reaching out to help low-income and at-risk kids.
And the hospital doesn't just stop there. Boston Children's really understands the importance of training the next generation of top pediatricians and nurses, so they can continue to provide the best, most innovative care possible to kids.
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