We finally have a date for Hope's next varices surgery. She will be going in on January 22nd. That gives us a couple of weeks to pray for this procedure, I cannot handle losing ground with Hope. She continues to poorly tolerate her feeds and is not getting any better. Going back to the OR makes me think about weaning her off oxygen again from the intubation and stopping her feeds all over again. I can't imagine us getting out of the hospital anytime soon.
Today has been rough. I'm getting tired and the endless hospital stay is starting to wear on me. I feel terrible that I look forward to leaving the hospital when I'm here. At the same time I'm always anxious to get back in the mornings. I love Hope like crazy. I have to remind myself that mothers of healthy children do not sit in one room with their child all day long. They walk away to shower, go to the kitchen or change the laundry. In the hospital, you don't have those options. As each month goes by, my sanity slips further away and I have days like today. I long for a vacation from my life and yet could not bear to leave my girls behind.
I have started working hard to stop sleeping at the hospital. Hope doesn't know if I'm there or not when she's sleeping. It helps to leave but is a part time job to organize it all too. We also work hard to have dinner together as a family. It has taken an army of volunteers but most nights this happens. Maybe God is calling me to start a charity when this is all over. Finding other people who have experienced endless hospital stays that will volunteer their time to take over for parents that are in hospital with their children.
I truly hope this weakness and overwhelming emotion is hormonal or temporary. I cannot continue coming to the hospital and sitting next to Hope each day. Watching her retch and desperately try to throw up while her face is blue is too much. Seeing the lab roll up to the door and knowing that Hope will scream until they get their blood and leave her another bruise is so hard. Leaving a piece of my heart each time I walk out of the hospital room is beyond painful. I want to pick her up and take her with me. We all long to be with those we love and I have to take my family in pieces each day.
I am in need of prayer. I want the Lord to renew my strength. I desire to not allow comments from others or lies from Satan to make me feel guilty anytime I leave the hospital. I want to bring Hope home and to see some light at the end of the tunnel. Tomorrow is a new day, I pray I wake up with renewed strength.