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....

Friday, December 30, 2011

Day 89 of the Feeding Tube

Trey did awesome with feeding yesterday.  He had about 23 ounces during the day so we decided to keep the tube out overnight.  Well, he's just so darn predictable because today we've been struggling to get him to take just 90mL at each feeding.  I don't get it, I don't know why when he doesn't get fed overnight he doesn't eat much the next day.  It's not that he didn't have enough yesterday, he should have had enough to keep his energy up to be able to eat today.  It's very odd.  Instead of crying while being fed he just swats the bottle out of his mouth when he's done.  There's no trying to keep it in anymore to get him to feed.  When he's done he uses his hands to get it out and turns his head.  His first feeding at 6:45 am he took 120 mL, (he then got fed every 3 hours from that) then 80 mL, 45 mL, 85 mL and then 120 mL. 

We also got a letter in the mail the other day that informed us that our appointment to the Gastroenterologist had been cancelled and rescheduled for February 14.  Well, that just wasn't going to work!  I made the January 5th appointment before Thanksgiving and had been calling daily to see if there was a cancellation!  There's no way we could wait till February.  So I called and pleaded with them.  They had me call the office manager and thankfully she was able to fit me in on January 3rd.  She said that they were overbooked though and to expect a wait - they would fit us in somehow.  Hopefully it won't be hours and hours though.

On Wednesday this week we had a special visitor!  Hannah, our nurse from Inova PICU, came to see us!  She came to the house to see Trey and then we went to Cafe Rio for lunch.  It was so nice to see her!  It's nice to be able to talk to someone who knows first hand what we went through.  She was our nurse the first 6 days after surgery and medically, she could read him like a book.  She knew exactly how to manage his pain and care for him more than I ever could have.  She was a godsend to have in the hospital - it was nice to have someone that I felt was looking out for Trey as much as I was.  You could tell she got pretty attached to him during our stay. 

Speaking of the hospital... someone let me know the other day that there are still people from the hospital that are reading the blog.  Hello out there!  I have to admit - I actually enjoyed being around a lot of the nurses and doctors in the hospital.  It was nice getting to know them and I miss interacting with them (not enough to do surgery all over again though!).  We met so many wonderful people that made being there a lot more "pleasant."  I really do think, that besides the help from God, it was the people of Inova that helped me keep my sanity during the time we were there.  The staff there took such good care of not only Trey, but me as well.  Thank you to you all!  I had such high hopes of getting to the hospital with a special thank you during the holidays but things just got so busy.  Feel free to contact us if you get a chance! 

I also would like to share our family Christmas card with the readers of the blog.  I really hope that you had a fantastic holiday season and hope you have fun plans to ring in the new year!

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