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 9, 2011

Day 27 - 5 pm - Still working on feeding

We got to the hospital today and the nurses were carrying Trey around the nurse station.  They didn't want to give him up!  They said he did fine overnight and they're trying to compress all his feeds into an hour now.  They give him 30 minutes to work on the bottle and then the rest goes in through the feeding tube.  Yesterday he ate about 100 mL at each feeding but today he is consistently only eating about 60 mL out of the 120 mL he's supposed to eat at each feeding.  My goal is not to have a feeding tube when we get home... actually, my goal would be for him to just come home nursing.  I'd rather not have to pump, bottle feed and then tube feed at home.  We shall see.  Tomorrow he will meet with the speech pathologist about his suck/swallow reflex.

Trey watching Sunday football  - he was rooting for his cardiologists favorite team, the Bills

He is still having a fair amount of PVC's but they're still not concerned with them.  He'll have random ones while he's awake but they start a regular pattern when he falls asleep.  You can see them on the monitor.

We got a new roommate today so we don't have the room all to ourselves - bummer.  They had moved us the other day because we had an unusual roommate.  I just felt more comfortable being in a different room.  I was hoping we'd be able to stay roommateless but we have a newborn in the room with us now that is in for jaundice.  She's 2 days old and under the billy lights.  Hopefully she'll be better tomorrow and we can the room to ourselves for the last few days we're in the hospital.  I think they're looking to discharge us sometime around Wednesday.

The boys spent the weekend at Grandma and Grandpa's house.  They went go-carting and miniature golfing.  Bryce also got to go to his favorite hobby store and got a haircut.  

Tomorrow is a busy day.  I have open house at Bryce's school in the morning and then I am going to head up to the hospital.  I hate leaving Trey alone at the hospital for so long but it will mean a lot to Bryce to go to his school.  Bryce will remember me not being there, Trey won't.  It's definitely hard though to think of Trey by himself with no Mommy or Daddy there.

Also, please keep sending in Baby Power pictures.  We haven't received that many and I know there are tons of you out there keeping Trey in your thoughts and prayers.  When he gets older I'd really love to have a visual way of showing him how many people were out there supporting him during this time.  Click on the "send Trey some Baby Power" button on the right side of the blog.  I want him to be as overwhelmed when he sees it as we are by your comments and emails.  Thank you!

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