Thursday, June 4, 2009 - We have been home from the hospital for 3 weeks now. That just absolutely blows my mind. Today began the rest of the follow up visits. We have everyday booked from now until June 11 with doctor visits. Today's appointments went really well. The first appointment was with the research nurse we are doing a study with. We agreed to be a part of a Plavix study. The way we see it - it is one more set of eyes watching over Elle. The doctor that is in charge of the study is Dr. Justino and he was the attending cardiologist when we were moved to the 15th floor. He is a wonderful doctor and when he asked us to be a part of the study, we really didn't have to think twice about it (although we did take our sweet time signing the paperwork). Everyday I give Elle some of this study drug. It is either Plavix or a placebo - we don't know. They are studying to see if Plavix will be as effective in infants as it is in adults. The risks are minimal and it is not only benefiting Elle, but may also benefit children in the future that need to have medicine after getting a BT Shunt. Gina, Dr. Justino's research nurse saw us today. She weighed Elle and our little princess is now weighing in at 9 pounds 6 ounces. She's gained 2 pounds since birth! She is also 21 1/2 inches long. She's grown over 2 inches in the last 10 weeks!! After seeing Gina, we went to see Dr. Wesson so he could take out her feeding tube and put in the button. Lee went with us because we had heard that the procedure to take out the tube was horrible - that the doctor basically yanks the tube out of Elle's stomach. Well - it's true - he did have to yank it out - but it wasn't that bad. Dr. Wesson covered the area of Elle's stomach where the tube came out with gauze and before I could even blink he had the tube pulled out and was putting in the button. Elle didn't even really cry - she kind of yelped and then was fine. She screamed more when she was having the x-ray done to make sure the button was going into her stomach than when Dr. Wesson pulled the tube out. She is such a little trooper! 
Elle dressed and ready for the doctor
Elle's tube with the massive dressing that kept the tube from being pulled out
Elle waiting for Dr. Wesson - no dressing on her tube
And the button is in! We attach the feeding tube from the machine directly to the button and off she goes!
And she's out!
2 comments:
What a blessing this button is!!! I am so happy for her and these pictures warm my heart! What an angel. Love you guys
So happy that this day went well for you. Continuing to pray prayers of thanksgiving for the wonderful doctors and nurses that you have encountered.
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