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, September 30, 2011

Day 18 - 8:50 pm - a great day!

Trey had a fantastic day today!  David came to the hospital with me and when we got there Trey's Occupational Therapist was working with him.  Since he's just a baby, occupational and physical therapy are very similar.  They both work with helping him strengthen his neck and chest muscles.  His therapist today had him sitting up and he loved it!  He was all smiles when we came in the room.  She had him holding some toys and tried to get him to explore them with his mouth.  Afterwards, Trey took a nap and David and I went to lunch down the street at a restaurant called Sweetwater Tavern that all of the nurses rave about.  I had their famous Pulled Pork Sandwich with Sweet Potato Fries and David had their Salmon.  I also just had to try their Flourless Chocolate Waffle with Vanilla Ice Cream.  YUM!

After lunch we headed over to the Inova blood bank.  Since Trey was on ECMO, he was given a large amount of blood from the blood bank so that the blood would fill up the ECMO tubes and his body.  In result, the blood in his body right now is most likely not his.  Unfortunately, the banked blood is older blood and red blood cells have a lifespan of about 120 days.  Our bodies are constantly making new red blood cells to replace the older ones but babies Trey's age don't make them as fast as you and I.  Right now, he is bordering on anemia (meaning, the red blood cell count in his blood right now is on the low side) and instead of giving him more old blood Dr. Keller suggested direct donor blood.  My blood type is A+ and Trey is O+, our blood types are not compatible.  So the hope is that David has the same blood type as Trey so he donated 1 pint of blood at the hospital's off site blood bank.  Just in case David has a blood type that isn't compatible, my mother in law is going to donate tomorrow because she definitely knows she is O+.  It takes 3 days for the blood to process and then if needed, he'll receive a transfusion of fresh red blood cells.

When we returned to the hospital we were able to hold him.  We spent the entire afternoon holding him.  First me, and then David got to hold him for the first time.  Trey was thrilled!  He just kept looking up at Daddy and smiling.  He really couldn't get enough of him and it was super sweet.  I think he missed his Daddy this week.

Trey celebrating his increased Ejection Fraction!

Trey flirting with his nurse crush, Hannah 


His nurses sending Trey some Baby Power!

I want to thank you all again for your continued prayers and support.  While I'm having a hard time responding to everyone I want to tell you that I appreciate every single comment left on here and my personal facebook page.  Whenever I read something you all have written, it makes my heart soar.  It really does.  The amount of support and awe of how strong you think I am makes me want to just cry at times out of happiness.  I have to admit that I don't feel very strong throughout this - I know I've done ok and kept it together - but I feel as though I've been spread so thin that I'm having a hard time being patient with each of my children.  I don't want any of them to feel neglected at all but I also don't want to get upset with any of them because we're all tense right now.

I also want to thank those that have sent in Baby Power pictures.  Please keep sending them in!  I'm not going to put the video together until this ordeal is over and I feel as though I can pack the experience into a picture montage.  When Trey is older I want him to be able to visually look back and see all of the support he received.  I want him to see the pictures of the people that were praying and raising him up.  Feel free to make your own sign.  Even if we don't know you personally - send in a picture so that Trey knows you thought of him.  We haven't received that many but I know there are tons of you out there.  Click here for the post that explains Baby Power.  The pictures can be sent to treyheart@gmail.com.  Thank you!


  1. Randi,
    I am an O negative blood type (universal blood type). If you would like me to give blood for Trey, let me know and I would be happy to do that. Hang in there. Annamarie

  2. Randi. I am O+ and if you need me to give let me know! Still praying for all of you. Jen Souter