Today was rough, it began with such disappointment and it was hard to move past that. My mom went into the NICU in the late morning, but Shawn and I went out and tried to do something 'normal' to give ourselves a real break. We wandered around the antique mall and made a trip to Winners. It was good to do something more normal for a couple of hours.
We spent the afternoon at the hospital with Hope and into the early evening. She had a period of wakefulness, for over 40 minutes, that was such a treat for us and a real blessing as she rarely opens her eyes these days. Hope was given a blood transfusion this morning because her blood levels were low after all the blood they've been drawing from her little body. Her colour improved and she seemed to perk up after the transfusion. Both of her IV's failed today. They shaved a new portion of her hair and put another IV into her head and moved the one in her arm to her hand. It is terrible to watch them do this to he. I held her face and sang to her with my eyes closed as I can't handle to see the pain in her face.
Shawn and I are at a hotel this evening. We're taking a break from the Ronald McDonald House and the constant stimulation there, as we're exhausted. We'll be up early tomorrow and at the hospital for rounds. At 6:35 am we'll have blood cultures that will have sat for 48 hours and we'll know if the infection is fully gone at this point or not. If we receive a negative result, a surgery date and time will be set as the surgeon, Dr. Ross, wants the surgery to take place sooner rather than later. The heart medication that Hope is on will slowly weaken her lungs and we need to have her off this drug as soon as we can.
At this point, our schedule is such that we never know where we're going to be at any given time, usually we're either coming or going from the hospital. It has become increasingly difficult to make any plans or arrange times for visits. Some of you have mentioned that you'd like to drop something off at the house for us, and we want you to know that we are very grateful for your kindness. Even if we're not home, the office is open all day and they'll be sure we receive it. We truly don't have the energy to sit and chat right now. Due to Hope's infection, we are cautious about the risk of additional illness before surgery or post op, as the risk of re-infection is too high. After Hope's surgery, her chest will be open for a few days and the infection risk is extremely high then. As a result, we won't be allowing anyone to come in and see her, it's just not worth the risk. We don't mean to offend anyone, we simply have to protect our fragile little girl.
We have been encouraged today to hear of all the people around the world that are praying for Hope. It was incredible to hear that our entire church was praying for Hope this morning. We so appreciate these prayers and beg you to continue praying.