4/15/18 - Changes

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Today the weather was bad outside. Mom and Dad got to me a little later than they'd had liked. I was resting when they arrived. I had a decent morning. The last week or so has been such a roller coaster for us. My doctors come and go in teams weekly; that's how it works here. It's good to have a lot of doctors and their knowledge..."two heads are better than one". Having so many people, so many ideas and opinions though can be pretty hard on me sometimes. I'm not good with change. Medicine changes, not getting milk again now today (because my renal numbers have been poor), getting a bag of blood (and all the risks to my transplant that come with that) and just my care plan changing weekly is really hard for me; especially on my Mom. She cries a lot. They have almost lost me so many times and each time was after a big change. Mom was very emotional today. She doesn't even feel like my Mom most days and feels like even pumping milk for me every day is just starting to be all for not; so the feeds stopping made her very sad. It's the one thing she feels like she can do for me. It's so hard for her to see me in my hospital bed every day and not be able to pick me up and hold me. My parents feel very much at the mercy of the staff here at the hospital. My life is very much in their hands and that is so so scary for a parent. The care here at CHW is amazing and they are doing whats best for me. They are trying to fix me up as best they know how. We love the staff here.

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My Mom and Dad want me home so bad. They say the house feels so empty without me. I want to go home, too. I pray that I can stay strong enough to wait for my heart to come and have surgery and get to go home soon and be a normal little boy. I want to be a normal baby. My family doesn't understand how this could happen to me? I know there are many other babies like me, but why? My parents are completely broken hearted every day, but they do their best to keep it together for me. They are always smiling and happy when they see me. They tell me every day how much they love me. I love them too. I sleep a lot nowadays, but I always try to peek an eye open so they know I'm listening. They need that from me. I am strong for them, too. I slept most of their visit today. Mom swaddled me up in a flannel blanket and rubbed my back for me; it was so warm and cozy. My ECMO scar is healing nicely, too. Hoping tomorrow will be a good day. Every day I'm still in this world is a good day. 

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