9/9/18 - The Upside

Tomorrow will be my 200th day in the hospital and I'll be 200 days old! What a crazy journey it has been thus far...wow. I've fought SO incredibly hard to get to the place I am now...stable. It's hard to even say that word, honestly. It's scary to feel comfortable when you've been thru everything my family and I have in the past. I'm happy now. So incredibly, unequivocally happy. For the first time in my life, It's like I am on the right side of a bad situation...the upside. 

I smile in my sleep. Sometimes, just dreaming. Sometimes, I am dreaming and Mom will make a silly noise and I'll smile. I smile a lot. Smiles are my favorite. Today, especially, I have a lot to smile about...I'm tolerating G feeds. Things can always change, as we have learned thru this all, but as of today, I have tolerated continuous milk into my tummy at a rate of 5ml/hr yesterday and 10ml/hr today. If I keep it up, the care team will increase my feeds to 15ml/hour tonight at about 9pm or so. This is a HUGE deal! If I can fight this fight and handle these feedings into my tummy, I will go home in such a stonger, step-ahead place. I won't be so far behind. Thank you for all of the messages and prayers, helping me thru this recent adversity. I don't think any of us really thought this could happen, but I am doing it! Please, Lord, please let my body keep up the good work and grow stronger.

I snuggled with Mom, in my Boppy and wrapped up in my blanket. I was very sleepy today. My vitals were fine and I am okay, but digesting milk for one of the first times in my life is a lot of work! So, I snuggled and snoozed. My favorites! It was a great day. Mom read me a few books between doing her training sessions with the team. So much stuff to learn before I come home. Today she did CPR again, gave all my medicines to me while she was here and did my G-tube cares. Big days coming up! I think I will go to bed now. Good Night. -Heath

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