Wednesday, September 29, 2010
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.
Friday, May 7, 2010
This is the first time Jimmy got to hold Chandler. It was his first time to take a bottle (he was almost 8 weeks old). It was his first time to get to take a bath in the tub instead of a sponge bath. He loved it, he even fell asleep. He is now two months old I can't believe so much time has passed. He is doing good, he is completely off the oxygen. The only attachments he still has are the monitors and his NG tube. He weighs 5lbs 9oz so he is finally growing good. Before he can come home he has to take 8 bottles a day and right now he takes 2. He doesn't do that great with bottle feeding, just real slow. More practice. His last head ultrasound showed that his hydrocephalus is increasing due to a blockage between the 3rd and 4th ventricle in his brain. He has an MRI today and we will need to meet with the neurosurgeon to see when they will open it up. He also had eye surgery almost two weeks ago, and every thing is looking good. He got to be in a commercial advertizing for a local childrens miracle network telethon, so that was exciting. He has such a sweet personality. He is very easy going. I get to hold all the time and he just looks around, when he hears the monitors beep or other babies cry he raises his eyebrows trying to figure out what is going on. We just can't wait to bring him home so our family can be together again.