Bittersweet news......

Hello everyone,



Just wanted to write and give you an update on babygirl. She completed her cath around noon today. She did very well. Dr. Beekman came in and talked to us and he was happy with how well she did. During the cath they reviewed her heart function, and pressures, which looked good for Jenna. Her right pressures are still 80% systemic, compared to the left. Which means that the left side is supposed to be 2/3 higher than right and Jenna's right is almost the same. But for Jenna her numbers look good. Her VSD(hole in the bottom of her heart) is almost completely closed, which is not the original plan, but for now she is tolerating it. If need to be opened, that has to be done in the OR. Her ASD (hole in top of heart) is still open and looks good. He was not able to access through her legs, so he went through the liver. He said that he is able to do this option a few times, but not forever. So we will take that for now. The right pulmonary artery which he had discussed with us at the last cath, he reviewed again to make sure of how things are. In April we were told that the stents broke apart and clotted off and the artery was blown. However, today he went in and took a special picture and beyond the closed off area, it was noted that the artery was open and functional. This is good. He looked at the artery in her left lung that comes off of her aorta, which he discussed at her last cath as well. He said before that it was "hairline" thin and was not sure if it could be opened. He decided this time it was too risky and possibly would completely damage what little that was functional already. However, he felt that it was possible it could be separated from the aorta and re-attached to her conduit she already has for her pulmonary artery. This would improve the blood flow since it has good bloodflow. So, this possibility along with the correction of the blown artery, he feels could possibly be repaired in surgery with Dr. Eghtesady. So, he will be sitting down in conference with him and the rest of the team on September 10 to discuss if these are options for her. In regards to him and the cath lab doing additional work on Jenna, he said that he is pretty close to being finished. He will continue to look at the work he has done and attempt to keep it open, however in regards to finding anything else to fix, he does not have any more options. This is why he would like to talk to Dr. E, to discuss if he can help. So, here lies the bittersweet news. We are happy that there are additional options for Jenna; however, these are surgical options. After last year, we are just very apprehensive. But we want the best for Jenna. We always said that if there was a chance to help her quality of life, then we would always do it. Now, we are possibly being faced with a big decision. So we will see. Dr. E may look at the pictures and decide that the situation is too high risk and not agree to do it, or he may not. Since she has little amount of blood flow to her lungs, it causes high pressures in her heart. Therefore, by doing the surgery it will increase the amount of flow, helping relieve the pressures. Over time, the pressures if stay high will cause damage to her heart, shortening the function. So, by doing the procedure, it will be a big benefit to her, if able to do so.

Today Jenna has done fairly well, considering she had to be flat for four hours and she hurts from her procedure sites. Overall, she has been a trooper as usual. She is resting now, her night time routine is finished and we are giving medications and will be putting her to sleep soon. We want to thank everyone for the love, support and prayers to her during this time. It means so much to us. We have enjoyed seeing our friends up here, unfortunate that it has to be here, but we love our Cincinnati family. Keep the prayers coming! They have worked because in April we left thinking that her options were over and here we are with two possible areas to fix. Thanks again everyone, we love you!!

Love, Jenny, Justin and Jenna