August 5, 2009

Hoping and praying for a better day......

Evening of August 5, 2009

This afternoon Jenna's surgeon Dr. E stopped by to discuss her situation. He said that we are going to do a heart cath tomorrow around 11am to obtain diagnostic results on her actual pressures in her heart. He said that he does not feel that they will be doing any type of work on her arteries, but it is possible one may be narrowing off. Once the results are obtained, then the team will discuss the next step. He said that they may discuss tomorrow evening about her or they may conference on Friday afternoon about her situation. He said that if her pressures are in a safe range upon looking at the heart cath, it is possible that we will have to go back in for another open heart surgery. He said that he may have to do a VSD fenestration which means that he will "poke" a hole in a certain area of the heart so that blood can push across to that side if her right side pressures are too high and the blood can go out to her brain and organs safely. It is also possible that he remove the patch he placed completely. He said that he did not want to have to go back in and open the patch, but if possible he will. If he keeps it closed their is a risk that her heart works to hard and eventually goes into failure. If it is opened, then over time it is possible that her good collaterals(arteries in the lungs) will deteriorate over time. So, he wants to obtain the cath first and then make the best decision for Jenna. He said that there is a little fluid in her upper left side of her lung and this may be hindering her oxygen levels. Earlier in the afternoon her oxygen dipped down to the 80's and did not go back up. He is concerned that at some point she may develop pneumonia, because she is at a greater risk due to her condition and being on the vent.He requested that a bronchoscopy be performed to determine if she has mucous plugs (fluid areas in her bronchials of the lungs) which could cause the blood in her lungs not be able to distribute evenly causing her not to breathe out well. These results came back and she actually did have some mucous in both sides, which was pulled out and sent off for cultures. Her oxygen improved also after the test.

We were told before the surgery last week that it could be possible that he would have to go back in someday and open the patch placed. Also, that if she could not remain closed, that there no other options for the situation. He stated these words again today. He was quiet when he spoke to us and said that he has been worried about Jenna since her surgery last week. He is concerned and feels that she is very sick, worse than 24 hours ago. I asked if even if the patch has to be opened, could it be possible that she still have trouble coming off of the ventilator. He said that this is possible. He said that right now her pressures are the same on echo(even on both sides) which is what she was prior to surgery. But again, over time if left open it will "overcook" her heart and damage it. So, he wants to look at both sides and determine the best option. He said that he wants to give us a 100% answer, but can't. Her situation is very limited in what can be done, and is typically just palliative. He is going to speak to us before the cath tomorrow and after to discuss the next step. If surgery is decided it could be as early as Friday of this week or over the weekend or even Monday. We will see.

They placed her PICC line in this evening, which went well. Jenna is currently on a paralytic drip which completely paralyzes her and keeps her still and calm. She has been very quiet most of the evening, her numbers have remained good. She is scheduled for 11 am tomorrow, and we spoke with the Nurse Practitioner and cardiologist about the situation and what they would be doing. He said that it is possible that where the hole if needed to be done would be placed is in an area that if they are able to go back someday, then they can plug it in the cath lab. Not another open heart surgery. So this was a positive thought. The attending is still concerned with her and wants to continue getting fluid off and keeping her comfortable. Her drainage tube is still getting fluid off and she is peeing lots. They are holding her food right now since she is going to the cath lab in the am.

When speaking with her attending doctor about her test results. He told us that he feels that Jenna is "laughing" at him every time he attempts to keep her calm with sedation, he just is appalled at what she has been given and is still pushing through it. He also stated that he feels that Justin and I are exceptional parents, he does not know how we do it. He said that we have been through a lot and just cannot imagine. This made Justin and I feel good, since he is not much of a talker. :) Late this evening Jenna received special visitors-CJ and Sammie which was nice, since it was a surprise! This was nice and comforting. More family will be coming to support us in the next couple of days. We need it. Please keep praying for our baby girl. She is fighting this hard, but needs some help. Justin and I are just trying to process everything and hope and pray that she will move in the right direction soon. My heart is aching so much and I want to cry so much. For those who think I need to let go- I have more than once today. I write this blog to help me deal with the situation. I want to get the story out so everyone will pray and think of her daily. We will keep everyone posted on how things go tomorrow. We just hope things improve soon. Thank you so much for all the love, support, and prayers!

Love, Jenny Justin and Jenna


  1. Hi Jenny I work with Linda and my heart goes out to you and Justin. God gave Jenna parents like you and Justin, because he knew the love and strength she would need to make it thru this difficult time. As you continue to draw strength from the people around you that love you, remember when there's no family or friends near God is. When there's no one to talk to God's there. In his word, he says he will never leave us or forsake us....Keep looking up Bev Day

  2. Jenny and Justin,
    Remember Jenna knows you are with her and she gains strength from your love. We know the two of you are tired and worried, but please know there are so many of us that think your strength is amazing. So many prayers are going up for your continued strength. Mommaw doesn't have the opportunity to post a comment, but she sends her love, prayers and hugs across the miles. Thank you for taking the time to post updates. You will never know what it means to be able to read your words and stay informed. Continue to lean on one another and God. We love you very much
    Mike and Linda

  3. Hi Jenny & Justin...I work with Linda.. I have been praying hard all night and requested prayer at church last night. You all are under God's care and watch. He will give you strenth and grace for all things. Keep trusting...God Bless you. Jerri Gibson

  4. Jenny,

    You and Justin are exceptional parents, your doctor could not be more correct! It is amazing to me both your strength and calmness thru this journey. Mom has said that you often are the one comforting others vs. allowing them to comfort you and that is so true. You are always making sure they are comfortable with the information and understand fully day to day developments or what to expect next. You are both selfless, open, honest and so loving to your family and friends. But more importantly you are strong for Jenna, which I believe has made her strong. Strong enough to hang in there and continue to fight like she has since day one. There are prayers going out every second of the day by those you have touched and the word continues to spread and prayers continue to grow.

    God Bless and Love You Guys

  5. Jenni & Justin;

    Just want to let you know again that you are in our prayers constantly. Prayers for Jenna are requested at each church service and on our prayer line. I know you are hurting and I just wish I could be there for you. If there's anything I can do, please let me know.

  6. Jenna, Jenny and Justin,
    You are loved by us on earth and our Heavenly Father. Many and constant prayers are going up in your name. We will also pray for peace and calm in your hearts as you make decisions with the doctor. God will give you wisdom. Keep talking to Jenna and holding her hands. She knows you are there and that is probably why she is trying so hard to wake up. Thanks again for all the wonderful updates and postings. We better understand (in our limitations) what is happening and what you are experiencing. Love and grace to you.
    Jo, Don, and Seth Burns

  7. God bless this little angel. She sounds like a fighter. I will keep her in my thoughts and prayers.

    Hugs and kisses to little Jenna.

  8. My prayers are with you guys. We have a 3 year old with a brain issue--so your situation hits very close to home. A close friend told me that God sends the special children to parents who are fighters and have great strength. I believe in that. Much love and prayers!
    Missy Sizemore

  9. Hello Jenna, Justin, and Jenny,
    Here is a poem that we found and thought of you! We continue to pray for good health and strength. Love, Brent, Lisa, and Slaton

    It takes strength to fit in.
    It takes courage to stand out.

    It takes strength to feel a friend's pain.
    It takes courage to feel your own pain.

    It takes strength to hide your own pains.
    It takes courage to show them.

    It takes strength to endure abuse.
    It takes courage to stop it.

    It takes strength to stand alone.
    It takes courage to lean on another.

    It takes strength to love.
    It takes courage to be loved.

    It takes strength to survive.
    It takes courage to live.

    ~~ Author Unknown ~~

  10. Jenny,

    I work with Linda, and everyone that I come in contact is praying for you and that baby girl and your family. Keep your head up, and never loose faith in jesus. He will guide you through this rough valley!!!

    Love and Prayers

  11. My prayers are with you - I have never met you but I know your Grandfather. Little one you can make it keep fighting

    Judy Waldrop Richland, TX

  12. Had a lot to say, but I think I will just let you know that you all (extended family and friends) are being prayed for by many, many people.
    Sent prayer requests and Support Group invites all around the country and many have responded.
    Love and prayers to and for you all.
    Joe and Tracy McGrath

  13. Jenny, Justin, and Jenna,

    You two are amazing parents and Jenna is so blessed to have you both in her life. There are so many prayers going out to all three of you. Try to stay strong and positive. Lots of hugs sent your way.

    Lori, Justin, and Tristan

  14. Dear God, Thank you for this child, and brave family. Make your presence known to them, and bring them your healing touch and kiss of peace. See them through this time, and give them strength. Surround them with your love, and those who love them, and sustain them in body, soul, mind and spirit. Guide those who minister to them. Give them clarity of thought and the skill to aid you in healing this child. We love you Lord, as you have loved us. In the name of the Father, Son and Holy Spirit. Amen.

  15. My prayers are with you and Jenna. You are on the church prayer list also.
    Thanks for the blog. It keeps us aware of the life you are living at this point.
    Bless you.
    Roberta Wilson

  16. Praying for the Beautiful Ms Jenna in Ohio!!

    Jeff, Krista and Alexis Grace

  17. Sending you love, strength and prayers from Winfield.

  18. Have been and will be PRAYING for you all here in St.Albans WV along with Eternal Light Church of God, Stacy