PICU - Day 4

Holding pnut for the first time in 4 days!
Its day 4 in the PICU at Phoenix Children's Hospital. The staff here has been great. Two of our other children were able to come and visit Nicolas for awhile today. Our youngest wasn't allowed in as he is only nine years old and you have to be 12 to visit. Nicolas is doing well. He no longer has the fever that he had immediately after surgery and for about 2 days afterwards. He has gained weight also and that is really good news to us. He weighed 9lbs 3oz before surgery and is now weighing 9lbs 11 oz. They don't want him to gain too much too fast so they will have to adjust his food accordingly. They are giving him 24 calorie formula with added rice to thicken it to help with his reflux. I think it might really be helping as his reflux symptoms have seemed to decrease. He has a swallow study this week and we are consulting with specialists about his spine(kyphosis and scoliosis). It gets so hard to hear the negativity of some doctors. That is one thing I can say about this hospital, we are yet to meet a specialist that gave us the "your kid is probably not going to live" speech. Hopefully that will continue. I mean, we all know that he has campomelic dysplasia and that the odds aren't in his favor. But we also know that there are children living with this condition, not only living, but thriving. They must realize that we didn't relocate our family 1500 miles away to hear negativity, we came here for hope! Well, little sweetie is waking up so I have to go. Please keep praying for us. Prayers that Nicolas wont need surgery for his spine, for protection from infection, for strength and healing for our little guy. Thanks friends! Love, Jenna