Wednesday, April 30, 2008
James decided to kick his feeding in gear last night and seems to have jumped this latest hurdle. He still needs to continue to improve, but there is nothing the hospital could offer that home can't right now.
He has mouth syrup that has some numbing and other medicines to ease his feeding pain and we also gave him some tylenol. However, he doesn't seem to have pain at the moment and a large part may have been learning to breath while eating. Most infants have a learning curve and loose weight the first week. Unfortunately James does not have that luxury and needs to bounce back sooner.
His weight has been about the same the last few days. Yesterday was 6lbs 13oz and today was 6 13.5. The clinic had a used scale that the Doc sent home with us that will help us monitor between visits. We also have a suction device to aid us if, but more likely when he has choking episodes due to thick mucous.
No new blisters to speak of in the last 24 hours. Time will tell if his open sores will seal shut as we had trouble with Anthonys getting past the last healing stage. The blisters that kept thier skin covering seem to be progressing through the final stages.
Dad was able to make into work for the first time this week, but we still have a long way to go to get into a managable pattern. We are contemplating sending Abby to the same home for the same time period every day to help both her and us to adjust. Last night we decided to come home and give here our undivided attention for a few hours and that was time well spent.
We forgot to mention that Since the weekend, Abby has had a cold and has not been sleeping well. She also seems to be teething again and this afternoon has been in pain.
Mom needs to catch up on sleep so Dad will have to give up some of his that he's been clinging to.
Overall the last two days have been positive and are biggest worries are maintaining a balance to our lives and caring for our Little Dude the best we can. We are grateful for any time we have at home with him and hope it last for many more weeks.
Last night when the grandparents were sitting James, they decided to get the nursing staff exited. Grandpa didn't realize he hit the Code Blue button instead of the nurse call button. When the first nurse burst into the room, Grandma calmly asked for some more formula. Nice to know they are Johny on the spot!
We appreciate all the words of encouragement and it's does help to know you are all standing with us, especially in prayer. Just as with Tony in SF, our brothers and sisters in Christ here are providing for our needs.
Please pray for continued progress with feedings, that his insides would heal and stay healthy and for our patience with calmness with adapting to our situation.
Tired and worried but not quite weary yet,
Stu, Tashia, Cranky, and Lil' Dude
PS - we have to keep the TV off because it drives our Dude crazy when that guy on the commercial keeps saying his name