5/31/18 - The "Pursuit" of Happiness

For the first time in my life, I am starting to actually feel a little bit like a normal baby. The care team removed the big, clunky CPAP mask and replaced it with a smaller nasal cannula version. I really like this style a lot. I have my face free. Free to explore it with my hands and fingers... (Mom posted a video of me from today on my Facebook page...there's a button on top of my updates page here that you can click to go see that):

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I enjoy exploring my mouth with my fingers. Its a bizzare feeling; the wet and gooey mouth stuff. I think about sucking on my fingers, but I don't. Right now, I'm just more interested in feeling stuff. I have a lot of tubes in my nose...I like to poke my nose holes to make sure the tubes are still there. Sometimes I scrunch my nose up and the breathing nasal prongs pop out and have to be reinserted. It's funny to me and I raise my eyebrows and grin. I'm a funny guy. 

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It was an odd day, today, really. Mommy gave me a really good, warm and long bath this morning. Soaped me up, lotioned me up and put me together in my dinosaur jammies. I was kinda' stinky before, but came out squeaky clean and ready to snooze. We like our Burt's Bees soap and lotion. They smell so good and make me feel clean. We soaked my fingers in some warm water, too. Got all the ickies out. My nails grow quite fast now. Mom trims them once a week, usually. To wash my hair, Mom used a little trick one of my girlfriends showed her. She grabs a diaper and opens it up and places it under my head...now she can use a little medicine cup to scoop up and pour warm water over my head to rinse the soap off. It feels amazing! I lay in bed to get my baths, so this works well so we don't soak all the bedding.

Anyhow, i felt so nice and did snooze after my bath. Mom talked to me until I fell asleep. She watches while I sleep; standing at my bedside and usually holding my hand. It's nice to feel a little bit close to her. Mom worries I won't know she's my Mom with all my girlfriends here taking care of me every day. Today, the nurse told her to let me sleep while she was standing with me, combing my hair. She stopped and just stood with me. It broke her heart. My nurse friend was right though, I needed to sleep; yesterday was a tiring day. It's hard to see Mom sad though, but I know she would never want to make my care team mad; they are, in fact, so kind and amazing with me. My whole family appreciates that. At the hospital here, the nurses ask every day "What matters most to you today?" when Mom comes in. Every day she says, "Please just treat my baby like a baby and give him some normalcy". Little do they know how hard it is to say that. My parents say that because they want ME to be happy. For ME to feel good feelings. For ME to feel normal. It comes at a cost to them though. Mom was jealous for the first time today. She didn't tell me; i saw. I was in some type of way and the nurse immediately scooped me up and started holding and bouncing me. It was incredibly sweet and right of her to do, but it made Mom so jealous. She feels like she's missing out on everything "normal" Moms do. Although, the bouncing and lovey's made me calm down quickly and prevented me from needing medicines to calm down, and as thankful as she was for that action, it was difficult to work thru in her head. I know she will be fine. That's just one of those things that families like mine go thru that you don't know about unless you're a family like ours. You learn to live with your new normal by letting go of ideas like "I should be holding him instead" and replacing them with "that was kind and I am so grateful she stepped in for me and prevented him from needing a PRN". Letting go of the stereotype things you think a Mom or Dad, Grandma or Grandpa should be doing with a three month old baby and coming up with the new norm. It's a work in progress. Mom always tells me when she is trying to cope, "Lincoln didn't say 'life, liberty and happiness'...he said 'life, liberty and the pursuit of happiness'". I don't really understand that yet or why she comes up with these weird quotes off the top of her head (she reads a lot), but I think it means we have to just try harder to be happy with the now and work twards tomorrow's happiness, too. Or something like that?

Mom let me sleep in the end and looked sad today, before she went. I hate to see her leave to go home. We miss each other so much. All of us...me, my Mom and Dad, and my family...we all miss each other a lot, every day. It's hard to be apart. Very hard. This journey we are on has not gotten easier, even with my recent improvements. In some ways it is harder, because I look better but I am not any better. I'm still a critically ill baby in need of a heart transplant. We are very thankful for the good days, though. Thankful I am still here fighting the good fight. I am tough. We are very grateful for the improvements to my comfort level. Today really was a good day for me. I like the "hum-drum" days, like today. well, until tomorrow. Sorry to write so sad today...this is part of my life story though. I don't want to count anything out. Some family out there, like ours, needs to hear how we got thru all the hard days...we will get thru them. I will get my heart gift soon. With everyone's prayers, I just can feel it. Good Night.  - Love, Heath

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