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....

Wednesday, October 5, 2011

Day 23 - 4:45 pm - Feeding Increases put on Pause

This whole measurement thing needs to be standardized!  I had to download an app on my Iphone to convert everything for me.  Trey's weight is measured in kilograms and his feeds are measured in either cc's or mL's - apparently they're interchangeable.  Outside of the hospital we measure things in pounds and ounces!

I had a slow morning this morning.  I just couldn't get moving.  We woke up around 8 and I just didn't feel like rushing around getting Bryce to the bus stop, he has to leave the house by 8:14.  Things have been so hectic around here so we slowed things down this morning.  I drove Bryce to school about 15 minutes late.  Out of the 3 weeks that Trey has been in the hospital he's only been to school late once?  I don't think that's too bad.  Sometimes I'm even shocked that we've been able to hold things somewhat together.  The house is pretty disorganized but it's not a total wreck and David has done a great job keeping the laundry done.

Of course, I hit traffic on the DC beltway... at 9:30 am... on a sunny day!  I so don't understand 495.  I got to the hospital at about 10:30 and Trey was so happy to see me he just vomited all over himself.  Apparently last night they changed his feeding plan. The original plan was to increase his feeds by 5 mL every 8 hours.  Since he was tolerating the feeds yesterday they decided to try and speed things up.  They changed the plan to increasing the amount by the same volume, 5 mL, but every 4 hours instead of 8.  By the time I got here this morning he had made his way up to 20 mL/hr.  The goal is to get him up to 35 mL/hr.  That is about what he was drinking before he came in here, it ends up being about 3 1/2 ounces every 3 hours.

This morning though he apparently wasn't able to handle 20 mL an hour because when I got here it all came out of his nose and mouth, about 3 or 4 times.  The poor kid soaked his gown and sheets.  So they dropped him back down to 15 mL/hr and have paused that amount until tomorrow morning.  The hope is that he can get up to 35 mL/hr and they can stop the TPN (total parental nutrition) and lipids (fats) that he has been getting through his central line.  That's the last thing that's going through the central line so if he can get off of those he can get the line out!  Wow, ironic... the med student just came in to talk to me and apparently he's still getting his lasix through his central line but they are going to switch it over to orally tomorrow.

This morning Chuck, the cardiology PA, took out his pacer wires!  Very exciting.  His chest/abdomen looks so different without any tape or stitches on it.  The wires had been taped onto his body and the tape had covered up where his drains were.  I wasn't here when they took the wires out but noticed he looked different when we cleaned him up after he got sick.  The scar from his heart surgery looks so nice, clean and thin.  The drain holes are bigger and not as clean looking.  I think the scars from his drains are going to be worse than from his heart surgery.

At noon he had some more occupational therapy.  The therapist helped him work with turning his head and with his neck muscles.  He really does enjoy sitting up!  Later this afternoon our roommate went home, so I time will tell if we get another one.

We also had some special visitors today!  Savannah, from the PICU, and Sara, an ECHO tech, came to visit us.  It was so nice to see Savannah.  Trey looks so much better and it was nice for her to visit with him like this, rather than so sick looking before.  It was also very nice for me to talk to someone.  The transition home is definitely going to be interesting.  It's going to be very quiet at home, not busy with lots of people around like at the hospital.  It'll sort of be like when I first became a stay at home mom. You go from having tons of people at work to talk to to having just the babies around.  I'm sure Cole will keep me busy though!

Sara actually lives in the same town as us in Maryland.  She did the echo of Trey's heart the night before his surgery.  She came by a few days after Trey's surgery to see how he was doing and to give him a hat she had crocheted for him.  She has an awesome charity called Healing Hearts Headware.  She makes little hats for babies and then adds a crocheted heart to the front of it.  The hat is absolutely adorable.  I brought it home to show my husband and kids but I really need to bring it back into the hospital now that he has most of the stuff off of his face and can now wear a hat.  When I bring it in I'll post a picture of him wearing it.

So right now we're pretty much just waiting for him to be able to tolerate feeds.  Once he can tolerate more they're going to start bottles.  Once they're comfortable with him taking bottles he can get the feeding tube out and then he can try nursing again.  Once that all happens he'll be able to go home.  He has another ECHO tomorrow morning to see if his heart has improved since last week.

Lastly, Hannah comes back to work tomorrow!  Savannah has assured Trey that his nurse crush will come visit him.  All of his PICU nurses need to come check him out and see what he looks like without a oxygen cannula in his nose!


  1. I just spent the last half hour re-reading old posts and catching up on the last few days. I have tears of joy streaming down my face that Trey is almost wire/tube free! (He reminds me of that Pinocchio song, "I got no strings on me!")
    I continue to pray for you guys.
    I send my love and support.

  2. I love this little guy. Thank you so much for maintaining this blog. It's been so helpful for friends like me who really want to be up-to-date on Trey's recovery and your well-being! Don't worry about the laundry- let it ALL go!!! You're in the most important place of all right now, with your baby! Enjoy him!!! xoxox