Joel Update

Joel doing great, but the poor little guy is so hungry! He's getting all his nourishment through his IVs, but his belly is still empty and he's not very happy about it. At least being a newborn he sleeps a lot, which passes the time for him.



He's really alert (when he decides to wake up.)


So relaxed- Joel really likes to be held when Mom and Dad are around.


No more repogle (suction tube)! They removed the tube to see how he did for 24 hours before they could let him try milk.


Joel's first feeding!!! 7/31 (12 days after surgery)


Content.


Happy Joel (and Momma) with a full belly... well maybe not full, it was only 1/2 of an ounce, but it must have felt better!




Really ready to take our baby home.

This was the day we got the pathology report back from the mass blocking his intestine and Joel was diagnosed with Infantile Myofibromatosis. The mass was a benign fibrous tumor. Myofibromatosis is extremely rare, so there's not a whole lot of information about the disease, but there are 2 types. He could have the solitary form, which would mean he only had the one tumor, they found and removed it, he won't have any more problems... or he could have the multicentric/generalized form where more tumors could show up at any time in any part of his body. There's no way to know unless he develops another tumor, so we'll always have to be on the lookout for any indication that a tumor is growing. After reading all the information we could find on the disease, it seems that if he were to have the multicentric form, he would've had more tumors at birth or soon after, so the older he gets, the less likely it will be for him to get any more tumors. His doctors are pretty optimistic, we are too, but of course it's hard not to worry about every little thing. We're just praying his is solitary, but if he ever did get another tumor, that we would find it fast and it would be able to be removed before it caused any major problems. We are so thankful to have found this at birth and for the excellent care he got in the NICU and that he's healthy and home with us now!