Posted Nov 20, 2007 9:32pm
Sorry it has been so long since the last update. It was a bumpy road when we came home, but we are now improving. The weekend after we came home, Jenna had some difficulty breathing, and her xray was not improving, so her pediatrician and cardiologist decided to admit her to Cabell Huntington Hospital. We were in there for four days, and were able to go home on Halloween. We added breathing treatments twice daily and another diuetic to help keep the potassium in her body since she was on Lasix so much. We returned to the pediatrician later that week, showing signs of improvement and later to the cardiologist two weeks later. Before her return to see her heart doctor the home health nurse had been coming in to see her weekly, in which she assessed that she was doing well with her oxygen levels. So, she spoke with the cardiologist and he chose to take her off of the oxygen at this time since she was doing so well. We will still have to assess her periodically when she is sleeping and playing to make sure that she is maintaining the correct levels. We saw the cardiologist last week, which at that time, we made him aware that she was not improving with her eating and that she been vomiting quite a bit. He felt that she had developed reflux disease, which is very common in heart babies. He said 90% of these children develop this problem. So we were sent home on yet another medication. However, we were happily told that we only had to give the breathing treatments as needed. Yeah!! The medication seems to be helping with vomiting and her eating. We feel that she may be getting tired of her feeding tube since she has pulled it out twice in a week. Daddy took her to the pediatrician this week, who was very pleased with how well she was improving. She weighs 14 lbs 1 oz and is 25 inches long. She changed how often we have to feed her to every fours instead of three, which is very helpful for us. She also seems to be more receptive to the idea of eating this way. She has hit records amounts of eating since doing so. She almost finished a whole bottle today!! It is sad when this is what you look forward to each day, whether or not your child will eat. Anyway, she is getting back to remembering how to roll and play with certain toys. She is still not able to sit up on her own, but she figured out how to hold her bottle on her own for about 5 minutes. Also, she is attempting to try the sippy cup. We are now able to try all stage one foods, which is exciting. Birth to three is coming tomorrow to see how developmentally on track she is. Hopefully she will be fine. We are also going tomorrow to have her first round of the shot to protect her from RSV, these will have to be given monthly for six months to protect her. Also, we are not sure when she will be returning to daycare, hopefully soon since mommy is not able to work full time (kind of important in the money department). I am only able to go in 1 or so days a week, usually whenever Justin is at home.
I will try to keep everyone posted as things change. Thanks for all of your thoughts and prayers during this time. It has been helpful. Talk soon.
Love, Jenny, Justin and Jenna