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.
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ReplyDeleteSo hard Amy, when you are a social person. I am sure the nurse meant well by her comments but I would ask your physician if that is a true reality. Did the doctor suggest totaly isolation when you left the hospital? So glad about the night nurse!!!Especially thankful for Shawn's job:). You have made it through the firs week, the next one will be better.
ReplyDeleteAmy, it's so good that you are blogging about all this. I can't imagine anyone keeping it all in! What a healthy way to express yourself, vent a little and get some encouragement :)
ReplyDeleteYou four are all on my heart and in my prayers today. I can't think of anyone better that could be Hope's mommy. You are strong and confident and put your trust in the Lord over all. One day she will realize your sacrifices too and thank you. Keep going day by day!
Amy, I know everyone told us the same things about Lukas as well but, the whole week we were home lok, we did go to church because that was a very important part of not only our lives but lukey's life too, all the people that spent day after day praying for this kid that they had never met wanted to see him! What we did is went to the front and just said they he is a look and not touch baby as he's very fragile and everyone understood we sat in the back corner away from most people and enjoyed church :) I am like you very social and there is no way you can stay home every day for months. Matt and I actually mounted sanitizer in our walls like they have at the hospital and yes I carried done with me at all times and made everyone use it befor touching him! You have to be crazy mom but if you don't have a life your going to become really crazy mom lol:) I guess I can't really say much as we have only been home a week in almost 10 months but I just think you shouldn't have to completely stop your life you just have to be way over protective that's all :)
ReplyDeleteHi Amy, your nurse gave you the exact same advice as all Will's doctors and nurses. It's not easy at all, but it does beat having Hope back in the hospital for sure, which is often what happens when these little ones get sick :) You can find creative ways to fit some of those things into your life - shop in the evenings or weekends when Shawn is home, take turns going to church - or listen to a message online, have friends come over for a lunch date or coffee (they can bring the lunch or coffee), and lots of walks outside and play date's at the park. Remember it's not forever, mostly it's just until the Glen (although it may feel like forever). Hang in there :)
ReplyDeleteHey Amy this is kellie and I know your mom I just wanted to tell you my daughter has kidney problems too and it's always something just keep your head up and know I think of you all the time
ReplyDeleteI feel your pain Amy! I feel like I wreak of bleach and hand sanitizer 24/7. We only get out if the weather is permitting for a stroller ride. I realized last week that I hadn't been out of the apartment since I got groceries on sunday morning. I thought it was only Tues. but it was in fact Thurs. All of the days just run together now. When is Hope's Glen going to be? Landon's is going to be when he is six months old (September) at least that's what we were told when we were at the children's hospital. His cardiologist here seems to think that we should wait a year to see if the right side of his heart will start growing. For sanity sake, I'm praying it won't be that long. Our church has set up a schedule of 6 woman that are ok with watching him on Sundays so we can go to church. This has been such a blessing to us. Don't you just dream of the day when your whole family can go to church together? Praying for you momma! Stay strong, your not alone!
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