To read Lenah's story from the beginning, just go to the side bar under blog archive and start reading from May 2013.

Tuesday, November 26, 2013

Tuesday, November 26, 2013

 Yesterday evening our sweet friends Joel and Rachel came to visit while Edward and I were at the hospital.  They very lovingly anointed Lenah with oil and prayed for her. After they left, Edward got to hold his precious sister once again.

She really loves being held.

Then today, Sofia and I went to visit Lenah.  Sofia was f.i.n.a.l.l.y. able to hold Lenah.  There has been a bit of sibling discordance over this issue. 

Lenah has been having quite a bit of nausea, gagging, and vomiting.  They had tried to start feeding her, but had to discontinue feedings as she was not tolerating them.  Her tummy is still quite swollen and seems to be making her uncomfortable. They have been weaning her off of the ventilator.  She can not go to hospice, home, or to a step down unit if she is on the ventilator.  If she can have the ventilator removed, we would be in a private room that we could actually sleep in and be with her all the time.  The children would be able to visit her more easily as well. At this time, I don't feel comfortable bringing her home to pass away.  If she were our only child, that would be different.  I'm just not sure how the children would handle that.

 Tomorrow at three in the afternoon James and I will be meeting with Lenah's doctors and caregivers to discuss her care plan. We still hope for a miracle. Please pray for Lenah and all of us.
Baby F will soon be going home to her Creator.  Please pray for her family.  I do not know Baby E's condition as I have not seen his parents, but he is still in the CVICU.  Also, please add another E to your list. She is 4 and is currently on a Berlin heart.  She was on the transplant list, but has had some setbacks and it is not certain if she is still eligible for a heart transplant.  Her parents have experienced the loss of a child previously. I can not even imagine. E's momma has been there constantly for her and loves her very much.  She has another child currently being cared for by her husband and family.  They live about 3 hours from Houston.  At least one other family-maybe two are saying their goodbyes as well.  I do not know these families as well as the ones previously mentioned.  But the Lord does, and he hears our cries for peace and mercy. Blessed be the Name of the Lord.


  1. SUCH SAD news in what should be HAPPY times for GODS children. When they should be thinking of Christmas lists and Celebrating with family,. And instead are SUFFERING from the Ungodly illnesses they have been given. When babies are taken long before their time. They have never gotten the Chance to REJOICE in the Lord. May God watch over their little Souls and Keep them Safe. May the Doctor do their tests and Studies to find what causes these Children to be Born with Such Birth Defects that they get no chance at a life. I PRAY ALMIGHTY GOD REACH A HAND AND TOUCH LENAH AND MAKE HER WHOLE AGAIN. I pray that she is able to get off the Vent and start taking her feeds and be able to move into a room where she can learn and know her family. I pray for all those children in the area around Lenah and make them safe and lift their pain. A parent is not supposed to bury their children they are supposed to have a chance at life.

  2. Hi Edie!

    I know the thought of home hospice care can be overwhelming. My father had cirrhosis of liver due to Hep C. When it was time for hospice care, he came to live with us. Our boys were 4 & 5 at the time. I was really worried about how it would effect them. It was actually a very healing experience to take care of him. In the final few days, he fell into a coma. I expected to be afraid but it was actually peaceful. Our extended family was there, we played music, we prayed, we hugged him and just rested with him. Daily nurses would come to visit, check on him, support us, etc. His passing was really peaceful, we cried but we had closure. It was much easier to be in our home. I loved being able to curl up in our beds, having the kids play be able to play with their toys, etc. I was worried it would feel really weird but it wasn't. I think having lots of having family around helped me feel more confident.

    Praying for a miracle. Much love to you and sweet little Lenah Bean.

    ~ Kelly Greenawalt

    You know your family better than I do. You know what they can handle and what you can handle. I just wanted to share our experience with you.

  3. Thank you for sharing, Kelly. At this point, I'm not sure Lenah would even survive the the trip from her room to the car to bring her home. We will soon see how she tolerates extubation-removal from the ventilator- on Friday.
    I cared for my Granny at her home as she was dying from cancer. I was holding her hand as she left this world. It was right for her and all of us. I just don't think it would be right for Lenah, nor for us at this time. I think we will all be saying goodbye very soon. Thank you for praying for us and supporting us, Kelly. I will never forget you. Your love towards us at this time is very much felt and appreciated. -E