Today was a bit tough on me emotionally. The reality of being a recluse has settled in once again. The home care nurse was here today and was sternly reminding me how dangerous it is to expose Hope to people. She strongly suggested that we never take Hope to highly populated areas; malls, grocery stores, churches, etc. , during this period before the Glenn. She told us to never let anyone come into the house that was sick, recently sick or around sick people (thank goodness summer is here). She told us to keep Hope away from children as much as possible and to never let someone touch her that has not washed their hands. She recommended having a hand sanitizer on every table in the house and using it as often as possible.
As I'm sure you can imagine after reading this, I feel overwhelmed by all of this. Are we expected to not go to church? Do I have to get someone to pick up my groceries for me for the next 3-4 months? I spend almost every day out running errands and meeting with people. I feel sort of like I have been put on house arrest. Although I believe Hope is well worth it, I still struggle with this reality. I'm thankful that it's summer and I can take the girls for walks and get outside to break up my days. Please pray for me as I adjust to this new lifestyle. To my friends in Calgary, don't give up on me...I'll be social again by Christmas!
Some positive highlights for the day...we found out that Shawn's coverage at work will help us hire a night nurse to come in and give us a break. We are working at setting it up and having at least one night a week with a solid night of sleep. I also had a nurse friend offer to come over for the next two Monday nights and allow us to get a full night of sleep. This is incredible news and will make a huge difference in our life. I look forward to waking up one morning and not feeling like I might throw up from being overtired.
I've apparently developed a reputation at the hospital. It sounds like all the departments have been told about the error made with Hope's feeds. One of the 'big guys' from the hospital called to apologize today and make sure we were doing okay now. Dehydration can easily cause the death of an HLHS baby and improper feeds that result in vomiting could easily do this. They have looked into how it happened and how to stop it from ever happening again. I'm glad they are working to spare a future mother from such a horrible first night at home.
My calendar is now full of appointments for Hope and is void of social appointments for me. I realized that becoming a mother would be a sacrifice. I've watched my parents, as well as Shawn's parents, sacrifice for their children all the time. I never imagined the sacrifice would be so intense, as we wait for Hope's second surgery and her health to be more stable. I celebrate her life, and mourn the temporary loss of my own, all at the same time!
I'm hoping for a beautiful summer that will help keep people from getting sick, and make it easy to plan to meet up with friends at the park next to my house. I can put Hope in the stroller and keep her safe out in the fresh air and away from strangers that like to touch babies faces and hands. If you're the kind of person that likes to touch random babies in public, you should wash your hands first...just in case.