November 15, 2010
I finally comforted Glory to sleep…she was achy and restless from a fever we did not know the cause of. I stared down at her lying in the hospital bed…fear overwhelmed me. I could not escape. I could not see the end and it terrified me. Do you know what scared me? Not that her years might be cut short here on this earth, but my overwhelming love for her. I admitted to myself that I was in love with her. It scared me beyond belief to be so in love with someone and also not know how much time I would get to spend with her. And no one could help me… or so I thought…
When I got back to the hotel, I checked a blog that I follow about a little boy named Bowen, another Hypoplastic Left Heart child (www.bowensheart.com). Sarah, Bowen’s mother, was writing about someone praying for her to be able to “hold Bowen loosely”. I don’t know yet how to love Glory passionately, but hold her loosely. Sarah’s blog put into words exactly what I was feeling as I stared at Glory in her bed, not knowing what was causing her fever, not knowing why her oxygen was dropping, not knowing what tomorrow would bring. Those fears were strong, but the one that overshadowed them all was the fear that I loved another human being so much and had no idea what her future would be. I have been thrown violently into the arms of the Father, and I am having to learn how to let go of a lot of things to live this way. The simple truth is that not one of us knows what our futures will be. We should not have to be thrown into His arms…we should run there as fast as we can.
Glory’s fever broke and her oxygen levels stabilized. Although they were unable to permanently repair her esophagus in her surgery that I spoke about in my last update, she is getting so much relief from the procedure that they did do. As I stated before, they have successfully brought the upper portion of her esophagus over to her upper chest to drain fluid and eventually some sort of food. Understandably, there have been a lot of questions about this. It literally is her esophagus brought to her skin to drain. It is very small (about the size of the nail on my little finger). She will continue to get all of her nutrition from her feeding tube which goes directly into her stomach. The esophageal drain is to give her relief from her saliva and mucous secretions, and so that she can begin to practice eating orally in the future.
In the weeks following her esophagus surgery, we have found out the true reason why Glory has continued to have episodes where her oxygen levels drop. The nurses were actually preparing us to bring Glory home, but she continued with these episodes so they put her back in ICU a couple of weeks ago and put her back on the ventilator. Through a CT scan, it was determined that her pulmonary artery did not grow after her first heart surgery the way that it was supposed to. In addition, her left lung is very weak and underdeveloped and her left bronchial tube is completely collapsed when she exhales. These two new findings are very serious, and they are complicated further by her existing esophagus issue. After much discussion amongst Glory’s doctors, they believe the best next step for her is to do another heart surgery. I am not going to begin to discuss the anatomy of what they will be doing, but it is a major surgery where she will have to be put on the bypass machine. They are going to re-route her blood so that her pulmonary artery and her left lung will get better blood supply, with the hopes that each will grow and get stronger with time. The doctors say that her best case scenario is that they do strengthen and grow, and she might still have to have a tracheostomy for a while to help her breathe. She still has her esophagus surgery at around 2 or 3 years of age and then 3 more heart surgeries.
We talk a lot about what our “new normal” is going to be like. The fact is…we’re not sure. Although I will tell you this…the other night I had a dream. It was not a vivid dream set in our reality; it was more like an idea placed in my head. Someone was pulling me out of the way… out of the way of something big. Whoever or whatever was pulling me out of the way was communicating to me that I needed to “Move out of the way…God is getting ready to do something big.”
Glory’s surgery is this Wednesday, November 17th. Please pray for her and her doctors. Please pray as we are given less hope for Glory being here with us. We have decisions ahead no matter the outcome. We are tired, and we can’t see the end of our suffering. I don’t want my daughter to suffer, and there is nothing I can do.
I got to hold Glory today, and I caught myself wishing for “happier times”…kids and cousins running at my feet, Sue-Sue sitting in her chair, Kayla running in and checking my fridge for Diet Dr. Pepper, Philip and Daniel tinkering with motorbikes… and then the irony of it is that there is sure a day to come where I will be wishing I was sitting in that rocking chair by the hospital bed holding a precious baby Glory Girl.
Again, we could not have made it without you…I cannot say that enough….please keep praying…
Love,
Kerry