Update: Thursday, May 20th

Today was a very good day for Robbie as he was able to recover from his surgery last night and get his first taste of real food.

For the next few days he is on a 3 hour feeding cycle where they are only giving him 10 mL of milk to see how his new Stomas (openings from his intestines) will handle real food. He has a larger stoma exiting the large intestine just above his incision and a smaller one below the insicion. The stomas empty in colostopy bags which he will have to have for about 6 months. Around that 6 month mark he will go back in for another surgery to fix his imperforated anus, basically they will make him a poophole. After that surgery he will still have the colostopy bags for about 3-6 months. After that the hope is that he can digest the food properly and have it exit his body like it should.

The bladder exstrophy is the same as it was prior to the surgery and to fix that he needs to be older and then they can go in and get him fixed up. They usually like them to be about a year old before they operate on that area because of the risk of bladder and urinary infections.
Also today the neurosurgeon came by to update us on why we thought we were coming to Children's Mercy for in the first place, his growth on the head. It went from an Encephalocele, which is really bad news, to just some funky extra skin tissue that should be an easy fix. He will still have to have surgery to repair this area, but it is not affecting his brain at all. He will have this surgery done more than likely on Monday. It is a quick procedure but he will have to be sedated again, which really scares us.

Not that I wasn't a believer before, but there is no doubt in my mind that the POWER OF PRAYER can really change the outcome of things. We found out about the Encephalocele at our 20 week ultrasound and from that day forward have had just our very immediate family and closest friends pray that this would go away. Well, the prayers obviously worked because it is gone now. Don't let anyone ever say that praying doesn't work because it does and we are blessed to have such great people around us to make this come true.

Now all we ask is that you keep the prayers coming that the bladder exstrophy and imperforated anus are the best case scenarios and that our little boy will be perfect in about a year.

I will have more pictures up later tonight for everyone to enjoy. He is quite the ladies man in the NICU because he has all the nurses flirtting with him, and trust me he didn't get any of that from his Dad.