We have booked our plane tickets to go to Philadelphia Children's Hospital for a whirlwind of appointments August 29 - August 31. We are getting a second opinion in Philadelphia. We are now choosing between Ochsner and Philadelphia. If we choose to go there it will be the first trip of many. Possibly come October and November the distance between our family will be pretty huge. It's starting to set in how tough it might be to go to Philly, having Melanie away for a month, and then the kids having their lives turned upside down. If we do go to Philly the toughest thing for Melanie will bed elivering away from Ochsner. She is a labor and delivery nurse there and has so much history working there. She will definitely miss being surrounded by close coworkers and friends when she delivers.
Planning this fundraiser is a great distraction but I wish Olivia could be born and she could be sleeping in her little crib in our bedroom. I doubt we'll get much sleep monitoring every little thing we can. That would be too easy then, I'd skip over the worry a parent experiences while their child has their heart wide open for the surgeons to see and cut and sew. I'd miss out on a call from Melanie saying get to Philly ASAP. It'd be nice to skip over that part. It'd be nice to skip to Year 3 after Olivia's final open heart surgery, and knowing we have climbed the mountain and can finally take a breath. Our little girl finally would have a normal amount of oxygen streaming through her blood like every other child. She might lose all the races at school, but she'll have the coolest scar out of all of her friends. If we skipped the whole experience then I would miss all the love and support from our friends, family, neighbors and community. I think having so many people praying and thinking of Olivia and our family is going to be one of the best things to come out of this entire experience.
Yet we aren't there yet another month or two until November. The tension, nervousness, and helplessness are the only things I can feel right now. I appreciate everyone reading our blog, it is great knowing how much support our New Orleans community is showing us.
I wish I could tell you it will get easier, but it was hard being away from my boys when Hope was in the hospital. It was hard every single time. It is still hard when I spend an entire day away from them at appointments. But...it is better and Hope is doing great and we only go to appointments every six months and she will have her Fontan in a couple years. We have had NO hospital stays since May, 2010...over a year. It gets MUCH BETTER!!!
ReplyDeleteI will continue to keep you in my thoughts and prayers.