9/18/18 - A Milky Situation

Ok…so, back to pukes again…not fun. The night was a little rough…milk pukes all over. Mom came in this morning to me puking, again. During rounds, the care team bounced some ideas off her. The tentative plan, is to hold my feeds at 25ml/hr. That’s 10ml less than before. If I can tolerate the 25ml/hr, they will try again, more slowly, to increase feeds to the full amount. Same idea as before, but no medicine changes and slower paced increase in volume. If this plan doesn’t work, then we will probably go with plan B…place an NJ into my nose. I’d be fed into my instestines and not my tummy via a nose tube. I would then, stay with the NJ, until I grow more and am big enough to have the GJ procedure (yes, unfortunately another procedure). Right now, I’m too little for the GJ. They would convert my G tube to feed into my intestines…but the research shows that it’s best for me to be a little bigger to be safe. So…if I can’t tolerate feeds and we have to go with plan B, that means I’ll be in the hospital a while longer. It’s unfair, but would be best. Sure is a tuff pill to swallow for my family, though. They were all so thrilled to hear I could be home and then, it feels like the light at the end of the tunnel was just shut off…heartbreaking. Anyhow, I had a nice bath to feel refreshed. Then, lots of snuggles and Mickey Mouse Clubhouse helped me thru the morning.

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I didn’t nap during snuggles, but I did feel better when I went back to my crib. I was smiley. SO smiley. The small break from pukes was nice. I urped up once more and then physical therapy came to work with me. It was a good session. I tried out my G Tube pillow Mom found on Etsy. It was pretty comfortable. I laid on my tummy and showed everyone how good I can hold my head up while I pressed light up buttons on my toy. Then, Mom carried me around the room a little. I looked out the window and saw a car. It was big. Someday, when I go home, Mom said that my windows will show much different things. I’ll see trees and animals, instead of concrete and cars. I think I’ll like that. Oh and hey, I found my toes today and grabbed them with my hand. Also, my tongue is wild nowadays! Mom put some Chapstick on my lips and I licked it all off. He, he, he. We read a bunch of books and I napped so good this afternoon. Hopefully tonight and tomorrow I have no more pukes. I hope you will still pray for me, my family and my donor’s family. Could sure use some more prayers to get thru this. Good night. -Heath Here are some cute pictures:

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