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, December 13, 2011

Day 72 of the Feeding Tube - Rice Cereal

Trey did ah-mazing today!  He drank all of every bottle I gave him today!  I also offered him a tablespoon of cereal mixed with 30 mL of formula and he ate it all!  Again, he eats about 60 mL or 2 ounces of formula pretty easy and then it's a bit of a struggle to get him to take the other 2 ounces (sometimes it's 3 ounces easy and the last ounce is a struggle) but he took it all!  If you include the 30 mL he had with his cereal he actually took 1 extra ounce today by mouth!

Today I bought a larger bottle on Amazon, right now I just have 4 oz bottles.  Once I get it I'm going to try to offer 5 ounces at a feeding and see how he does.  If I can get him to 5 ounces I think I'll try keeping the tube out overnight.  Wow - I can't imagine having a somewhat "normal" life!  The only thing that won't be normal for us is that I'm not nursing anymore.  Formula and bottles are a new experience for me.  I have no problem with using formula but I'd prefer not to pay for it.  The idea of paying for something that I could provide is frustrating.  I stopped pumping a few weeks ago because my supply was getting pretty low and the pumping was getting to be too much.  I was trying to feed a bottle, then setting up the tube feedings and then pumping.  It was a pretty long process.  I could probably start pumping more again to try and get my supply back up but I don't know if I have it in me to do that.  The thought of Trey being able to feed himself his own bottle in a few months is also kind of nice.  I've never had that.  I usually nurse the kids until 1 and totally wean at 13 months.

As I write Trey is now receiving his overnight feed of 480 mL or a little over 16 ounces.  He's still set up in the take along swing next to our bed.  His bassinet has now turned into his dresser.  I keep all of his clothes and other supplies in there.  He still doesn't have a room in the house though.  We haven't quite decided what to do with the other kids.  Bryce keeps insisting that he wants to share a room with Cole but I'm not exactly sure if that's a great idea.  We could move the computer down to the basement and move Trey in there but that means a lot of rearranging.  I don't know if we have enough energy for that right now!  I guess we still have a few weeks left to decide.  Right now I should probably just focus on weaning him off of the tube at night and getting through Christmas!

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