August 24, 2010

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

8 comments:

  1. Thinking and praying for you Little Miss Jenna!!! You are still my Little hero even tho I haven't seen you in so long ;( ... but, I think of you everyday!!! Miss you so much!!! Love Always, Sammi

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  2. You 3 are everyone's heros!!!!! Don't ever stop believing, fighting, keep your strength and integrity. You are inspiration to all of us!!! I love you so much. Grandpa Cliff

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  3. Hi Lil Jenna. You have climbed more mountains in your short life, than most of us will ever know in our whole life time. Our Lord is surely with you and is protecting you for a very special reason. Your family and friends are right there climbing with you in our hearts. FF lil girl and our prayers are always with you...Love From Holly

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  4. We are glad Jenna did well with her procedure. We love to hear that there are options on the table for Jenna. We pray that God helps the doctors make the right decision on what is best for Jenna. Our thoughts and prayers go out to Jenna and your family daily.

    Love,
    Brent, Lisa, Slaton, and Grayson

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  5. It was wonderful to hear that Jenna did so well! We will pray that the doctor and the both of you are able to make the right decision for your special Angel. We know that God is protecting her and getting her through all of this. Our prayers are with all of you.

    Your Friends,
    Lori,Justin, and Tristan

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  6. I am praying for you Jenna !!

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  7. To the Meadows family: I am keeping you lifted in my prayers!

    Jennifer L. Galaway, DPM
    Classmate of Stacy/Mike
    TUSPM '99

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  8. CHD is also something that NEVER crossed my mind until August 11, 2008. I went in for my routine OB Ultrasound and was told my son more than likely was going to a Hypoplastic Left Heart baby. December 23,2008 my amazing Brayden came into this world. Echo showed Coarc of Aorta, ASD, VSD. Come to find out his aortic valve fused in utero, leaving his bicuspid vs tri. Underwent open heart surgery at 6 days of life at Carolinas Medical Center in Charlotte, NC.
    My many prayers are with your sweet Jenna and of course your family. I know how it feels to be the one watching your baby be taken away for surgery...the endless waiting...and then the sleepless nights in the CVICU.
    God is AMAZING!! My hope is that you can feel his arms wrapped around you and know he will be in control :)

    with love,
    Kelly Slusher
    ESeeU@yahoo.com

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