Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Sunday, October 16, 2011

Day 4 (home) - Quality Time with the Older Boys

Trey was about the same today.  He woke up throwing up at about 6:40 am this morning.  Watching him retch and throw up repeatedly with a terrified look in his eyes has got to be one of the worst things to see.  He just looks so awful and you can tell he feels it.  We stopped his feed at about 200 mL short but I was not going to force more food into that little body that was obviously not taking anymore.

He was pretty cranky for most of the day - inconsolable at times, so again, my guess is withdrawal.  Yesterday we went down on Methadone, today was Valium and tomorrow is Methadone again.  It alternates like that until the wean ends October 31.  Oh great... I didn't even realize that's Halloween.  Hopefully he won't be irritable that day, there's a lot going on in this house on Halloween!

I ended up not going to sleep last night until about 3:30 am.  I just couldn't fall asleep because I was scared I wouldn't hear him throw up if he did.  He was also breathing very raspy and fast and that worried me.  Every noise out of him worries me!  On the other hand when he doesn't make a noise, that worries me too!

I was exhausted today - still am - but I had a really good day with the other boys.  We went to one of Bryce's friends birthday party at Pump it Up and they allowed Cole to join in on the fun.  Pump it Up is the "Inflatable Party Zone", filled with a bunch of inflatable bounce houses.  We had a blast!  Cole had some difficulty climbing the obstacle style bounce houses so I went in with him and helped him.  We had so much fun!  I ended up getting quite the workout climbing and sliding down everything but my goodness, it was fantastic to hang out with the boys again.  I really haven't done anything with them in over a month.  They were in their element too... a place they could run, jump, fall down and just be crazy boys!  Plus, it was a "glow" party so the lights were turned off, the black lights were on and there were light shows throughout the room.  The boys had a good time playing with each other too.  Bryce is such a great big brother.  He was so incredibly helpful with Cole.

Bryce helping Cole up the climbing wall
Taken with my Iphone - was a bit hard to get a good picture in the dark!

I also spent some time at my neighbors house tonight socializing.  It was nice to get out for just a bit.  Especially since I probably wont be doing that too much this week while I'm home alone during the day.  The boys came with me and played with the neighborhood kids.  It was a great way to really tire them out and they had fun!  Tomorrow we have the home nurse coming to the house.  Bryce has picture day at school so hopefully Trey won't get sick in the morning so that I can make sure Bryce's hair is combed and he looks nice.  Well, off to make up Trey's feed for the night, pump for tomorrow, give Trey his Valium at 1 am and then hit the sheets!  I can't wait to sleep!

10/16 Feeding

Last but not least... Happy Birthday 30th Birthday to my brother, Michael!

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