We have been home now for about three months. It has been great. About three to four weeks ago I started noticing changes in his head. It seemed to be getting bigger and it felt really squishy. He had an appointment with his high risk pediatrician who ordered an MRI. He was unable to have the MRI because his oxygen saturation level was to low to be sedated and so he had a CT scan instead. Within about an hour of the scan he saw the pediatrician who called the neurosurgeon, who immediately came and evaluated Chandler, and surgery for a VP shunt was scheduled to drain the excess fluid from his brain. On September 20th this surgery was performed and after four days in the hospital we are back home again. It is remarkable the difference in his head. He is recovering well and I hope to see more improvements as he feels better. We pray that we are done with surgery. It is not easy watching your child go through this and feeling like you cannot protect them.

Well since its been like four months, I thought it must be time to update. Chandler could never quite manage to take all eight bottles a day like he needed to, to get to come home. So after about a month of practice with little improvement it was decided that the best thing was for him to have a G tube placement. At the same time they also decided to do a procedure called a fundoplication which involves taking some of the stomach muscle and tying it around the esophagus. This will not not allow any thing in his stomach to ever come back up. This means that he will never be able to spit up or vomit. This procedure helps with his reflux. So finally on June 10th we were able to bring our baby home, after 96 days in the NICU.