Wednesday, June 9, 2010

Kicking the Habit

Ginny's condition hasn't changed much from yesterday. Today was a kind of "sideways day." After the roller coaster of the first few days, she's been improving by varying degrees each day, but always improving. We had gotten used to that gradual degree of improvement. Today, she didn't really improve, but she didn't really get worse either. Although we're happy that she is getting better and always optimistic, when we're in the moment we get a little discouraged that we didn't see any improvement today.

The staff in NICU 3 are getting a kick out of Rachel's "baby crack" analogy. Overnight we tried unsuccessfully again to ween Ginny off the stuff. We brought her back up to 5 ppm, and increased her dosage of sildenafil as well. Her response was mixed. Her oxygen saturation will do great for most of the day, but she has moments where they will drop into the 60's. We'll try again tomorrow to bring her off the nitric oxide and see what happens. Getting over that last little hump will be tough, so keep praying.

In addition to weening Ginny off the nitric, we've got a pretty big day tomorrow. Some of the coaches from the University of Florida athletic department will be coming to the NICU to take some pictures with Ginny for the March of Dimes. Ginny is going to be on a poster for their fundraising drive coming up. I'm not sure exactly who the coaches are or when the poster will be released, but I'll let you know. We'll also be recording an interview for the Children's Miracle Network fundraising drive coming up on the local Gainesville radio station.

Despite how stressful and emotionally draining this experience has been so far, Rachel and I have not lost sight of how blessed we really are. We've got good jobs at a company that has shown a great amount of support for us and provides us with an excellent benefits package. Without those benefits, I'm not sure we would be keeping our sanity as well as we are. We've also got great families and great friends. So many people have given blood, brought us lunch or dinner, done our laundry, mowed our yard, and most importantly, kept us in prayer. Not every family with a child in the NICU is that blessed.

While Rachel and I are focused on Ginny's recovery, it is impossible for us to ignore the need of those around us. A lot of you have asked how you might be able to help. We are exploring the idea of creating some kind of charitable foundation to help other NICU families. Until we get that figured out, if you would like to give we would highly recommend the March of Dimes and Children's Miracle Network. Both of these organizations have been very supportive, though in different ways. We would also recommend the Ronald McDonald House of Gainesville.

Thank you everyone for your thoughts and prayers, and thank you Kat and Bill for dinner. If you are in Gainesville, please visit The Red Onion Neighborhood Grill. It's a local business run by wonderful people. The food is good and the beer is cold. And man did I need that beer.


  1. Jason, while speaking with a friend here in Boxford and giving her the very good news that Doug & Wendy are grandparents ... she posed the question, "How much does she weigh?" "How long is she?" So?

    Every day I think of you all and continue to pray that Ginny keeps taking those baby steps to recovery.

  2. Come on precious Ginny, I know you can get off the NO, it is very hard work but Grammie knows you can do this. Just think about how great it will feel to be in your parents arms.I am still praying for you. I really miss visiting you, I am trying to get rid of this darn cold, I am hoping to see you tomorrow or Saturday. I Love You Grammie

  3. We know you can do it little Ginny!! We are rooting for you!! Love the Blues'

  4. Ginny,
    We are all praying for you and your parents. You CAN kick the NO aka "baby crack" habit. Then you can replace it with getting milk drunk right from the "tap"! We love you! See you soon!
    Aunite Cole, Auntie Jen, and RitaMarie