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....

Sunday, February 26, 2012

Gastro Update

The gastro dr. went well the other day.  Apparently Trey baffles her.  Trey didn't even gain 1 full pound while on the NG tube, but since going off of it he has gained 2 pounds.  Yet, takes in very little calories.  According to the numbers he shouldn't be doing as well as he's doing, he shouldn't even be hydrated... but he is and he's gaining weight.  Go figure.

She is having us up his calories again from 27 kcal/oz to 30 kcal/oz.  She just wants to make sure he gets enough calories.  Since he's gaining weight she doesn't want to put a feeding tube into his stomach, even though the amount he takes in warrants one.  We are giving 2 mL of mylanta before every feeding to see if that helps with the reflux (it coats the esophagus) and she had him get a blood test to check his electrolytes and such.  She also wrote an order for Trey and Cole to have a stool sample tested to make sure they don't have any bacteria (they both have diarrhea pretty bad still).

Apparently his upper GI series showed that his duodenum was a little misshapen.  This is the part of the small intestine that attaches to the stomach.  She wants to repeat the upper GI when he is a year old to make sure that it is growing normally with his body.  If he remains extremely fussy she said that we can repeat it sooner and also do a study of the lower bowels.  Basically, we're still just watching him and keeping options open.  We go back again to see her in a month.

I think we actually have a break from doctors this week!  Not one appointment scheduled.  Wow!  

Pediatrician Appointment last Friday for his Synagis (RSV) Injection

18 pounds!

Happy baby - he has no idea what's coming.

Synagis Shot #1

Synagis Shot #2

Trey's top 2 teeth broke through!
The poor kid has been extremely fussy this entire past week.  I'm really hoping that maybe this week his stomach and teeth will feel better and he won't be as cranky.  Last week involved a lot of screaming.

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