The New Outlook
This afternoon we had a conference with Haven’s doctors to discuss the issues at hand. The focus of this conference was for the doctors to reassess Haven’s status and lay out a new plan of action. They also wanted to make sure that we understood the seriousness of the situation we are looking at. Haven has a very serious and rare heart condition. As we all know, she as and always will have only half a heart. The prognosis for kids with this anatomy is not always a good one.Â
As test results are coming back, different pictures of the puzzle are falling into place. We know that multiple body systems are either genetically malfunctioning or have been damaged somehow by the stress that she has been through the first four months of her life. There’s no question that she has another very serious and rare condition (very likely to be genetic), so when you combine those two very serious and rare conditions you can find yourself with an even scarier prognosis.Â
The doctors wanted to let us know our options and find out where we stand in terms of how to move forward and what direction we, as parents, wish to take given all of this into consideration. We informed them that we will do whatever needs to be done to find out everything we can about our daughter and discuss any possible options available to us. So, next week, Haven is scheduled for MRI’s of her brain and liver, a visit to the heart cathertization lab, and, if she has shed enough fluid from her tissues, they would like to do a muscle biopsy as well. This should help put a few more pieces of the puzzle together. Her big genetics test isn’t due back for another ten days or so. Once we have pinpointed a diagnosis, we can begin discussing what treatment options are available, in any, and what we can do to give our daughter the best possible quality of life.Â
Haven has been sleeping most of the day today. Her white blood cell count is up a little (which has happened many times before), so they are keeping a close eye out for additional infections brewing.  Our hope for this weekend is that she continues to shed fluid and remain stable enough to be able to go down to her MRI’s early next week. As always, we’ll keep you posted. Thanks for all your prayers, love, and support. It really does mean so much to all three of us.  Â
Posted in Recovery #1 | 3 Comments »
April 13th, 2007 at 6:48 pm
Dear Jeremy and Alison, Hold strong….Matthew 11:28,29 “Come to me all you who labor and are heavy laden, and I will give you rest. Take my yoke upon you and learn from me, For I am gentle and lowly in heart and you will find rest for your souls.30- for my yoke is easy adn my burden is light” I can only search for scripture that may lift you up and reassure you. Continuing to pray…Michelle
April 14th, 2007 at 1:04 am
Sounds like you have had an afternoon full of alot of information that you need time to process. Our prayers are for wisdom for you as parents and the doctors as they use their knowledge to determine what the best plan of action is for Haven. I do believe that what the doctors know is a gift from God. God bless you as parents, Haven as the little fighter and your family as they love and support you and Haven.
As always, All our Love and Prayers, Laurie
I say ‘our’ because there are many prayers being prayed from Lansing. All three of my kids and thier spouses and the church they attend. May God’s comfort and peace surround you Jeremy, Alison and Haven Leigh.
April 14th, 2007 at 9:09 am
As our daughter Laurie said you two have lots of information to process. It’s nice to know you lean on God through all of this. I want to tell you Virgil has a pocket PC that holds lots of pictures and he has a picture of Haven in it and shows her off along with our six great-grandkids. We’ve adopted her into our hearts. She has such beautiful eyes. Always in our prayers.