Update-6/25/2012

After 4 days in CICU- Ryker was moved back to the recovery floor Friday evening!!!!! :) I am SO grateful all the testing is DONE! My poor baby has been poked, prawed & tortured! They did dozens of tests both with his blood & his GI tract & every single test they threw at him has come back negative!!! :) Ryker has absolutely no malrotation of intestines (something that is very common in heterotaxy babies) or blockages. Basically what we have found out was the cause of his pain was an overloaded digestive tract. On Friday the 15th in hopes to try to get some weight on him we moved his feeds from every 3 hours to every 2 & then on Monday when that wasn't enough the team begged me to let them up his calories in my breast milk & between those two changes his tummy just had it! Heterotaxy babies have extremely sensitive tummies mainly because their hearts (especially before the Glenn procedure- Ryker's next surgery) aren't strong enough to supply enough blood flow to their tummies to process large amounts food or too high of calorie intake, plus they have smaller than normal stomachs. So from here on out (no matter how hard they try to push me to let them up his calories) he will not have anything but pure breast milk either in a continuous drip or every 3 hours. We have learned our lesson loud & clear!! :) 

Another minor thing they did find in their testing is that Ryker has a very tight rectal sphincter causing him to seem constipated although his isn't. Therefore- when he was having extreme tummy pain due to the additives in his milk he would tense up even more that normal making it near impossible for him to poop, therefore backing up his intestines so much that it actually made them distended, causing EXTREME pain for my poor sweet boy! :( This is something we are hoping he will just grow out of, but the GI team said as long as he is on a regular bowel regimend such as suppositories &/or miralax daily & breast milk ONLY he shouldn't have the problems has been having any longer. :)

Over the last week my poor baby lost a little under a pound in body weight :( obviously setting him back quite a bit...but his weigh in this morning was back up to 3.275kg. which is 7lbs 2oz (which he was 3.495kg which is 7lbs 6oz) So we are going to get him back up & continuing to grow so he can get to his Glenn!

So as of today he is on 18ml's of continuous feeds of breast milk along with approx 5 bottles a day of 10ml just to comfort him & make his tummy feel more full. He is doing SO good with this! He had to get a blood transfusion yesterday & is now more pink than I have seen hm since pre-op....:) I LOVE IT! 

Hopefully soon I will get this boy back to giggling now that he is back on the road to recovery! :)

This the day he got moved to the CICU after he got morphine & was able to finally calm down. Poor sweet boy! The thing on his foot is an IV. He kept kicking it with his other foot so they had to put a boot on it.

My pink baby boy after his blood transfusion