4/13/18 - Restlessness


Well, what we have learned this week is that I am a stinky baby... I have been having what my parents guess are withdraw fits after some medication changes over the last week or so. It's hard for me. I don't do well with change. It's hard to trust the doctors and understand why they are making certain changes, but my parents reassure me that they are doing everything they can to help me and know what to do to get me better. That they have the knowledge to fix my broken heart. I'm sure you read previous posts about how upset I can get some days. I get my self worked up and I sweat like a grown man. Mom and my sweet nurses try to console me, but I just can't settle. It's hard. I have always been on something strong, like Morphine, my entire life to keep me somewhat sedated. That is what they do for babies like me...the doctors do what they can to keep me "comfortable" with sedatives so my body isn't overdoing it. I know that I'm a fussy baby right now, but I really can't help it and am so glad everyone is patient with me when I'm upset. So, I'm just dealing with that today. I want so badly to just be home and be normal. My family is restless waiting for me to come home; I am restless waiting for a heart and for my life to start. I feel like I've just come into this world to sit on the bench and haven't been able to play the game, yet. I want a day where I can just be free of the health problems and the whole situation and just be a baby. I'm restless. My team of nurse friends are all wonderful and have done their best to give me "normalcy". My family always says that their "What Matters Most" to them each day is that I have some normalcy. That is more difficult to achieve than you would think. How much can a baby need, right? Well...for one, I haven't been home, been in my crib, nursed; simple things. I am very fortunate that my OT, PT and a seldom miracle nurse have taken time to get me onto my tummy and sit me up. I love getting to be in different positions. I'm a little fussy even writing today. It's hard to go thru this all. I can't believe that I need a heart transplant. How did all of this happen and why? I am, however, very happy to still be here. I love my family. They love and need me. Someday this will all be behind us. I am writing to you every day, with Mom's help, though so maybe I can make a difference in the life of someone like me. Even someone not like me. This situation is, for lack of a better word, insane or complicated.


Anyhow, I got some extra medicine and it helped me feel more comfortable. Mom washed me up a little and swaddled me up earlier, but when I calmed down, I felt better and she let my arms free, lol. I was comfortable the rest of my day. I left an arm out of the covers to show off my pipes while I napped. I finally have a little more meat on my bones. Mom's milk, fats and lipids via IV and some TLC and this young guy is bulking right up. I wanted to show you something today, too, that I don't think I have shared yet. I have hairy ears ha ha! Look at that picture. Dad says my late Great-Grandpa had hairy ears, too. I wonder if they will always stay this way? We heard from some people that the hair will fall out, but Mom thinks it's just getting longer! My hair on my head, however, is in-fact falling out. I think that's normal for babies to go thru hair changes though? Hmm... That's all for today. Thank you all for writing to me! Mom read to me today and I was entranced; listening. It is so wonderful to know so many people love me and support me on this very very difficult journey. I'm fighting! Hugs!

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