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....

Monday, October 10, 2011

Day 28 - 10:30 pm - Feedings are getting a bit lazier by mouth

I'm scared.

Basically, Trey is only eating about 60 mL of his feeds, half of what he should be eating. They're saying that he needs 120 mL per feeding, 8 times a day to obtain his caloric intake for the day.  This is how it is figured out:

Trey's Weight = 6.9 kg (15.3 lbs)
Infant Calorie Intake based on age = 100 kcal/kg/day (according to University of Chicago)
Trey's calorie requirements for the day = 690 cal/day
Calories in Breastmilk per ounce = 22
Total Ounces Trey to eat per day (Trey's cal. requirements/BM cal. per ounce) =31.36
Feeds per day (every 3 hours) = 8
Ounces per feed = 3.9 oz (115 mL)

120 mL is just easier to measure out than 115 mL because it's 4 oz.  I did 2 feedings with him today since I was only there for a short time and at the first feeding he ate 90 mL orally and then had to be fed 30 mL by feeding tube.  At the second feeding he had 30 mL orally and 90 mL by feeding tube.  At the feeding before I got there he had 60 mL orally and 60 mL by feeding tube.  So he's all over the place with feeding right now.  Which of course means... most likely we will be coming home with the tube.  Ugh!

I have no idea how in the world I am going to keep the 2 year old from pulling it out of Trey's nose.  That petrifies me.  I have a VERY headstrong 2 year old.  Well... all of my kids are pretty determined.  I have awful power struggles with the eldest and the 2 yr old is following suit.  I just know that he is going to pull and tug on that tube and when I tell him not to he is going to have an absolute fit.  Once I say no, he's not going to listen... my kids push the limits.  He'll keep trying and it will one big power struggle.  This is something that he just can't win though.  It's going to be very difficult and it scares the life out of me that the 2 yr old is going to just keep trying to mess with that tube and it will be one huge fight after another.

Speaking of the feeding tube though.  I have learned how to prime the tube to get ready for a feed, how to make sure the tube is in the right place, how to start the feed, how to flush the tube after the feed and how to give his medications via the tube.  The entire day is going to be one big feeding process.  Basically, I am going to have to pump for 30 minutes, bottle feed for 30 minutes and then give the remaining milk through his tube.  Then make sure he has his medications and the pump is cleaned out.  That will take about an hour and 20 minutes.  He has to eat every 3 hours (from when he starts eating) so after the process is done I will have about an hour and 40 minutes to relax/clean/take care of kids before I have to start the feeding process again.

Oh. My. Goodness.

Um yeah, and did I forget to mention Cole has a cold?  Ugh!

BTW - they're thinking of discharging him on Wednesday.  Ack!

No comments:

Post a Comment