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....

Tuesday, November 1, 2011

Day 7 (home, take 2) - Another Good Day

Today was a good day... a slow day, but a good one.  The past two days I have been extremely exhausted.  Today I slept in and took a nap with Trey.  I also have a bit of a sore throat.  I really hope that I am not coming down with something because that would be awful.  Hopefully catching up on sleep and relaxing will help.  I actually got to bed last night before 12:30 am!

Last night we started with the soy.  He did throw up this morning at about 7 am but it was a much smaller amount than normal and it wasn't as traumatic as it normally is.  I stopped the overnight feed early, at about 485 mL instead of 600, but I added in an extra feed at 9:30 this morning to make up for it.  I think that's what I'm going to try tonight... 480 mL at a rate of 55 mL/hour instead of 600 mL at the same rate.  The overnight feed should stop at about 6 ish in the morning and then I will add another feed in at 9 am.

Tomorrow we are going to go for a blood test to test the levels of his Digoxin.  The Gastro. Dr was curious to know what they are because that can cause nausea.  I am also having my thyroid levels checked because I've been exhausted and my hair has been falling out a lot.  Granted, I've been through a lot the past few months and I've also had a lot of hormonal stuff going on by having a baby but might as well get it checked since that too can be changed by pregnancy.  The home nurse is also coming and hopefully Trey has maintained his weight.

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