Where to start.......

I know its been way to long and I am sure everyone is wondering how the boys are doing. I will try to think back to the time Easton was released from the NICU.

On December 14 , 2011 after 145 days in the NICU Easton was able to come home!! It was so nice to have our family under one roof. Easton had a rough NICU stay, my little guy had 6 eye procedures due to ROP, a PDA surgery, a VP shunt, and a broviac. Way to much for such a small baby! Easton came home on 1/16 of a liter of oxygen and now is up to 1/8th due to his reflux problem. Easton's first week home went really great, he was eating well and even sleeping through the night for 7 hours. Easton went for his first doctor check up at his new pediatrician, she said that he was acting the age of a 1 week old and said to get him into therapy as soon as we can. Not really what I wanted to hear. I told his doctor that he had been having reflux and would vomit daily. She told me that she would not give him medicine until he was losing weight and reflux can get better with age.  She was wrong and I am mad that I did not fight harder for Easton to get medicine. 5 days later Easton had a Pulmonologist appointment and at the appointment he threw up on me 2 times! This was not just a little spit up it was 4 ounces of food all over. At that appointment the Pulmonologist realized that Easton needed more oxygen probably because of his reflux. Needless to say she gave us reflux medicine right then and there and told me to get a new pediatrician!!

Over the past 8 days Easton has decided he does not like to eat. We have only been able to get 10-13 ounces down him a day. It is so stressful to try to force feed your child when you know its only hurting them! So on Monday we saw a GI doctor and he placed a NG tube so whatever Easton does not drink we can place the remaining amount in his tube. So now not only does my baby have a cannula in his nose he has a big old feeding tube that he hates! Its nice to know he is getting the nutrition he needs but its so hard to see your child suffer in the pain from his reflux.

Yesterday we went to do a follow up appointment with the Opthamologist and Neurologist. We went in hoping to hear that since Easton has laid in an elevated position since his first vitrectomy that the hemorrhage has dispersed and was no longer an issue. However what we hope is never the case with these two boys. Easton's hemorrhage is still there and blocking the fine focal point in his eye. The Dr. called in a retina specialist who told us that the damage might already be done. It has been two months and the hemorrhage is still there. (The damage being that he will have sight he will just not be able to focus and see clearly through his right eye.) Then the Dr. said that we needed to schedule an appointment with the surgeon from Oakland for follow up and the possibility of yet another surgery. Did i mention i hate going to Oakland? But i hate it even more that i might have to take Easton down there for yet a sixth eye surgery?