Sunday, July 18, 2010

Destination Autopilot

July 12, 2010

Four months ago, I couldn't imagine what life would be like outside of the hospital. Rosemary had her Fontan procedure on October 2, 2009 and her heart and body rejected it. She lived with pleural effusions for 6 months as we recycled ourselves in and out of Children's Hospital in DC. We were living day to day, sometimes moment to moment. I couldn't look one day down the road. At one point, I was looking transplantation or Hospice right in the face.

I'm happy to report that today marks 4 months since her 4th open heart surgery and Rosie is doing amazing! She is certainly a miracle. I have renewed faith in life, especially in her. After having pleural effusions for as long as she did, I thought it possible that she would be taking Lasix for the rest of her life. Fluid balance is a tricky thing because it's different for each kid. Well, today marks one full week that she has been completely off of her Lasix, and no complications. At her cardiology check up last week, her doctor promoted her to visit once every 3 months! Super exciting for us. This means Rosemary is doing spectacular.

I wanted to blog today because I remember how frustrating and different life was just a few short months ago. I pushed away my sadness by day, and sobbed and prayed by night. I was scared, I didn't know what else to do for my daughter, and now we're here. Rosemary's story is one that should offer hope to anyone who faces uncertainty in their life. Sustaining hope can seem difficult in the midst of prolonged hospitalizations, but if it's there, I believe it's the best medicine for everyone involved, especially your child.

Rosie looks great and she's thoroughly enjoying her life. I will never stop being amazed at how resilient she is. She's been going to the beach, traveling, and most importantly, living at home. Of all the destinations life has to offer, I prefer autopilot at home, for now.

I just want to add how grateful I am for everyone who has been involved in Rosemary's life. Family, friends, doctors, nurses, therapists, pray-ers. I couldn't have pushed forward as I did without you, and Rosemary being here is our way of saying Thank You. I will never forget any of you or your persistence in loving and caring for her. There isn't a day that goes by that I don't think about all of you and how full and blessed my life really is. It's been quite a ride. Thanks for arriving here with us.

1 comment:

Christian said...

I'm so glad your little one is doing better! We went to see Allison last night at Rockwood and I closed my eyes for a second and felt myself transported back to the Cecilia days. Best wishes! -Christian