Maddie was born in the summer of 2015 with a congenital heart defect called tetrology of fallot and needed open heart surgery to repair the problems.  It was scheduled for the day she turned 8 months old (April 18, 2016).  The surgery itself was relatively uneventful, but by day 3 post op her condition deteriorated and she had complete heart failure.  The Fairfax Inova PICU doctors and staff were able to revive her but she had to be transferred on life support to Children’s hospital in DC.  There, she slowly recovered: she came off life support, had a pace maker installed after a few more complications, and was transferred back to Inova for step down recovery.  Despite 3 open chest surgeries, multiple procedures, and enough CT scans to last a lifetime, Maddie recovered miraculously and was back to her smiling self.

She was discharged in late May and spent about 3 weeks at home.  The day after Father’s day, the medication she was taking for blood clots caused bleeding in her head and we took her to the Reston emergency room, where doctors immediately saw she had a massive hematoma and airlifted her back to Inova Fairfax.  She had emergency brain surgery a few days later (June 23, 2016).  The damage was extensive and she spent 8 weeks rehabbing at the PICU in Fairfax and subsequently, at a rehab center in Baltimore.

Maddie was just discharged from rehab right when she turned one and we’re finally home as a family again, but she still has a long way to go.  The damage to her brain caused her to lose vision, most motor function, vocalization, and the ability to swallow.  Due to her pacemaker not being MRI compliant, doctors don’t know the extent of the damage or exactly what was destroyed. She came home with a g-tube and lacked the ability to move her entire right side much .  Her eyes did not react much to light and movements were erratic and not synchronized.

Since then, with regular PT, OT, Speech therapy, and visits to dozens of specialists, she has regained a lot of motor function, can roll over and lift her head for tummy time, and most importantly can smile and laugh.  Jen spent the entire time with Maddie throughout the surgeries and will continue to stay at home with her while we assess her new baseline.

As Maddie’s recovery journey continues, we will update this blog regularly to keep everyone up to date (click “Home” above to seem most recent posts).  Please feel free to contact us – your thoughts, prayers, and words of encouragement have been instrumental throughout this time of trial for us and we’d love to hear from you.