We had our little boy December 30th at 9:42 p.m. He weighed 7.9 lbs. (same as Linc) and was 19 1/4 in. long. They were going to c-section me on Jan. 12th but he just couldn't wait till then. When he was born he had a lot more wrong with him that we didn't know about. He has something called Cloacal exstrophy. It is very rare and non of the Doctors knew what was wrong with him. The surgeon came down and looked at him and knew he had to be transfered to Childrens Hospital as soon as they could. So he had the Omphalocele and then the other included all this. He does not have an anus and the area under the omphalocele was all open and everything there was like cut in half and laid open. His bladder, part of his intestine, and colon were also fused together. The front of his pelvis did not form and was also laying open. His little boy stuff was pretty much not there. They did find his kidney and found that there was an obstruction, but both are working great. They rushed him to childrens and when he was only 10 hours old they performed a 9 hour surgery on him. I obviously had to stay at the hospital and our friends had the kids, Jared went to the hospital. Laurance, Julie, and my mom flew in that afternoon so they could all be here for us and help out. Jareds dad went to the hospital to be with him and my mom and Julie went to get the kids. To make a very long story short about his surgery, It went sooooo well. They were able to completely construct a bladder for him, The made a little "boy part" and were able to get and bring down his testicles. It is pretty small but there. He does not have an anus and there for will have a colostomy bag for the rest of his life. His right kidney is working great and connected to his bladder. The left, has that block, but is working GREAT! It is not connected to his bladder so he has it draining into a bag on his left side. They said they would reconnect it when he was about 1. They were able to seperate all the fused parts and put them back together. They brought his pelvis together and banded it. When he is 1 they will have to operate again to fix this. They then were able to close the opening up, except for the Omphalocele. He has some things wrong with his spine and they wont know what it is until later when they can do some scans. They are not sure if he will ever be able to walk or not yet, but they say he will live a long normal (considering) life. He is mentally all there and so very normal.
Because of his extensive surgery they put him in traction, put him on meds that paralize him as well as a ton of pain and other meds. He is on a ventilator but is starting to take breaths on his own. The traction part is where his legs are bound together and hanging in a 90* angle. They don't want him to move because of his pelvis. Today (jan. 8) they just took him off the meds that paralize him and we are hoping to start to see some movement and eventually he will open his eyes. They hope to put all the Omphalocele back in in about a week or so. He is extreamly swollen from all that he has gone through and plus he can't move.
It has been hard to see him like this, but he has blessed our lives more than he will ever know. Every day I see him I fall deeper and deeper in love with this extraordinary little boy. He is my hero. Thank you sooooo much for all your prayers and support through this difficult time. I will try to post updates often. We love you all.
Liam in Traction and paralyzed
You can see the Omphalocele on his little belly. It has gone down a lot since he was born. When they are able to put it all back in, then they will make him a little belly button.
He has the cutest little toes!!!
Most of his wires and monitors, actually its only about half. He has so many.
Thursday, January 8, 2009
Posted by Linzie at 5:24 PM