Today we went to UNC and received great care. We met with Dr. Bogess (she was great). We did receive an answer to prayer, being that they were very willing to respect our wishes as far as the vast majority of this goes. We were thankful to hear her recommend a C-Section as the type of delivery in order to protect the Ompohalocele and give the baby a better chance. She still was not very optimistic about the long term prospects but she said it could give us more time. We were also pleased to hear that The decision not to have an amnio for now was fine and that they would proceed fine without it. There would be no need to really have it prior unless we just wanted to know, because the Baby can be stabilized (hopefully) and the doctors could take 48 hours to test for the chromosomal abnormalities that they suspect. The Omphalocele can be medically stabilized without surgery for a time and then we can proceed to the next most life threatening issues which would be lung development and the suspected heart defect. I know a lot of details... We also met with a pediatric surgeon and toured the NICU (all very helpful).
So all that said we are really not all that encouraged by the prognosis and we are tired of the term "lethal anomaly" but we did get many answers today and they did take us seriously. We did hear some really good news-a strong heartbeat!! The Doctors and the center at UNC are just incredible. Our Care coordinator Maya is just fantastic at her job, we are so thankful for this much. We are strong today and I think very hopeful. Hope is scary because it increases the pain if it doesn't end well, but hope is worth it. We have a more abiding hope that is Christ and that surely helps to put this in perspective at least today. thank you for your prayers... Pray that this would not be a chromosome issue and that these other issues can be dealt with and isolated pray for our witness to the staff, doctors and nurses at UNC and for physical strength..We love you all so much!
The beginning of the story....
- Many of you have followed my journey from the beginning and many of you God has given to me along the way. Still there are many of you that this is your first time to my blog and I welcome you. Please take some time and read about the horribly beautiful road of suffering and joy that God has brought us on this past year and rejoice with us and weep with us. Thank you to each of you who take time and read this online journal of mine. Truly you have come to know my heart and I am so grateful for friends like you. Keep us in your prayers as we continue to walk and live day by day and for faithfulness to continue to write and remember the goodness and faithfulness of God in our lives. Here is our story......
Getting through this together
January 2011
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June 25, 2008
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Dear Casey & Dan! Just wanted ya'll to know that I am praying for you guys and thinking about ya'll all the time. I know very soon everything is going to start happening more quickoy even more so than now. I ask you to continue to hold on to that HOPE, because that will be more encouraging and a witness to all you are going to meet in the hospital. I wanted you both to know how you have encouraged me at work. Right now we have a very delicate situation with a month old surviving 24 week twin, whose family is very lost. Most of the nurses have not been very nice to the family as the situation has seemed hopeless to most and the family is somewhat hard to take care of, as they treat each other very roughly. I had their little boy over the past 2 weeks and my eyes have been opened to their need well before the mom told me, HOPE. I read your blog last week and what you said about hope being hard when the end didn't turn out as we desire but how that was what got us through. I felt like I could begin to really reach this family. Even though they may be lost or have walked away from God they still need hope and this mom is clinging to it even though all the news has been so bad... and I realized as a Christian I need to be there for as a nurse who shares with her the Hope she needs. Despite how hard this family may be, we had a long talk about this need for hope the other night, after they held their son for the first time (after a long and very difficult month). I just wanted to share with you how you have greatly blessed me! Thank you!
Leslie Bumgarner <><
Posted by: Leslie Bumgarner | June 30, 2008 at 11:54 AM
We are friends of the Penners and blogging friends of Angela Murray so we have been keeping up with you and visiting your blog here. Our family is praying for you and will continue to do so.
May the Lord in His strength and love lift you up in times of doubt and fear, surround you with His peace, and give you His wisdom daily.
-The Creech Family
Posted by: Faye | June 29, 2008 at 10:42 PM
We are continuing to pray for you. We are so grateful to hear of your recent hospital visits. The Lord is good... We pray that the medical staff will continue to be loving, supportive and informative to you during the days ahead.
All our love and prayers,
Jordan and Becky Maye
Posted by: Jordan and Becky Maye | June 29, 2008 at 08:42 PM
Casey and Dan, You are in my prayers constantly. I know alot of what you are going through. My daughter Olivia had Zellweger Syndrome and it is a terminal syndome. Do not let the doctors steal your hope... Your hope is in God and he has the ability to heal and to give you the time you desire with your baby. If you need to vent,cry or just have someone that has been there to listen I am here. I know your family and they were so supportive of me and anything I can do for you will be healing for me also.
Pam Freeth
Wife to Dan, Mother to Matt 19. Jordan 10,and Olivia forever 4 1/2 months old (born 7/29/04 into our arms and into God's arms 12/20/04)
Posted by: Pam Freeth | June 29, 2008 at 04:51 PM
This is a prayer I found while doing a devotional and I thought it might be helpful and encouraging for you. You are in my prayers daily.
Heavenly Father, make us sensitive to Your Spirit so we will know Your will in every situation. Help us distinguish between our wishes and Your plans. Teach us to trust You even when our prayers aren’t answered in the way we expected. Grant us faith to believe that You are in control and have our best interest at heart. In Jesus’Name, Amen.
Posted by: Elizabeth | June 26, 2008 at 01:25 PM
I am praising the Lord for your good experience and encouraging Dr at UNC! God is answering the prayers of the MANY, MANY people that are standing in the gap for your baby.
Continuing to pray...
Posted by: Angela Murray | June 26, 2008 at 01:25 PM
This is a prayer I found while doing a devotional and I thought it might be helpful and encouraging for you. You are in my prayers daily.
Heavenly Father, make us sensitive to Your Spirit so we will know Your will in every situation. Help us distinguish between our wishes and Your plans. Teach us to trust You even when our prayers aren’t answered in the way we expected. Grant us faith to believe that You are in control and have our best interest at heart. In Jesus’Name, Amen.
Posted by: Elizabeth | June 26, 2008 at 01:24 PM
Dear Dan and Casey -- We are so glad some positive came out of this visit. Praise God that He gave you sensitive and kind care! We are continuing to pray for the three of you. Much Love, The Penners
Posted by: Megan PEnner | June 26, 2008 at 06:02 AM
Very glad to hear all of that! God is good! We have added you guys to the church prayer list as well as ours at home! Look forward to more updates and positives! Don't give up! I believe with all my heart that this baby will be a living miracle of what God can do! Stay strong! I'm sorry you're having to experience this! Being a mom is the hardest thing in the world, but yet the most powerful and precious gift! Hang in there you guys! Love ya!
Rusty and Ashley
Posted by: Rusty and Ashley Ramsey | June 25, 2008 at 09:17 PM
Continuing to pray for you guys!!!! Praise God for the care you received today.
Posted by: Summer Owens | June 25, 2008 at 08:43 PM
I am so thankful to read that you received great care today and your voice for your baby was heard. I am praying for healing, I always ask God for this because I know He is able, if it is His will. And it is always good to have HOPE, even if it hurts. The Lord knows your hopes and you know where your hope comes from. He can be trusted and is faithful.
I stand in hope with you for this baby's life.
Laurie in Ca.
Posted by: Laurel | June 25, 2008 at 08:07 PM