Friday, September 10, 2010

update may 17, 2010

I started working on a note a few hours ago to tell you all about our journey the past few days and I have just realized it is too much information to handle all at once.

I will instead, for now, give you a brief summary of where we are at right now. I have not been intentionally elusive, we've just had some hard decisions to make in the past few days about our son's treatment. Things have changed lightning fast at times and to walk you though all those changes right now is too overwhelming for me and probably not what matters right now. I will at some point sit down and tell you more about the whiplash journey that past few days have been, but I think that now is not the time.

As of right now it looks like we will be going home tomorrow. I can't thank you enough for all your thoughts and prayers. There have been so many I think it may take me weeks to read and fully appreciate all of your kind words, thoughts and offers to help. I know that many of you have asked what you can do to help so I will take some time at the end of this note to give you a sense of what David, Gideon and I are already getting and might need.

Gideon's diagnosis has changed. He does not have aprosencephaly as diagnosed prenatally. He has another condition that is more common but does not essentially have very different outcomes. The name of the condition is encephalocele in addition to microchepaly. The doctor was correct in his findings that Gideon's brain is not only small and underdeveloped but also not structured right. Medically speaking Gideon will never talk, walk, crawl. He will never develop or be able to more than he can right now.

As a result of his condition he is at a very high risk for infection. Though it might be possible to opt for a procedure that could reduce the risk of infection and prolong his life, overall the surgeon who does this work has told us compassionately and frankly the risks for Gideon dying and experiencing undue pain and suffering are substantial and we have opted not to do this.

It is impossible to know how long Gideon will live. Predictions are that he will, with in the next few weeks or months succumb to an infection and we will, when that time comes make sure that he does not experience pain and that he goes peacefully to be with his Heavenly Father, where he will be healed, completed, whole and waiting for us.

Our goal is that his life be as filled with love as we can make for the time we have. The quality of his life is our top priority. Could God still miraculously heal Gideon? I believe he already has. After some research we discovered that only one in five babies with his type of this condition even survive to be born. God has given us this gift for a time and we will treasure every moment. We ask that you will pray for peace in our lives, strength to deal with our loss, wisdom to see what we have gained, and that we can cram as much joy and love into his little life as possible.

We pray that God will show us what Gideon is here to do. What lessons he is here to teach us. He has already touched our lives. I can't even begin to tell you what he has taught, but I will. Someday when things settle down and the grief of lost dreams has moved from the opened stage to the healing stage, I will be able to share some of the amazing things this little boy has shown me.

David and I, though heart broken, have a sense of peace about letting Gideon go home. We are not going to fight his home going; God is sovereign and we trust that he can use a short life just as much as a long one.

We are blessed to be working with some wonderful people from seasons hospice who are experts in pedapediatrice. We will have, at least at first a nurse with us 24 hours a day. Both the wonderful people at my church and a group fearlessly lead by my college roomie Erin number one are coordinating meals for us. (For the record Erin Ward you are only number two in sequences I love you both the same:)

Erin found me a moby wrap so I can keep Gideon with me as much as I want and I have a pump. My wonderful cousin Liz Videan has found us a bassinet will be up in IL this week; until then I am not above using a dresser drawer (though finding and empty one in my house might be a trip...I could probably empty the lingerie storage for a while...)

If anyone knows of a recliner that we could borrow or buy that would be awesome. We have found it to be a nice way to take naps with Gideon as he loves to be skin on skin and is best if he can sleep on his stomach. He also is fond of his furry daddy's chest. He seems completely content, by the way to latch with David not me..... We have clothes enough for the summer thanks to Braylon and Kale. We have a car seat from Tony and Coleen Mason.

We welcome visitors but we'd like to try to keep him infection free for a long a possible, we might not be able to let everyone hold him. We would also like a couple of days to gather our thoughts and rest. But if you would like to stop by let me know and we would love to have warned I've gotten over the whole not asking for help thing and might just put you to work. (Somebody has to throw the ball for Angus aka "Kong duty")

Thank you again for all of your thoughts and prayers. This journey is far from over and I have so much more to tell you about the last few days. We will try our best to keep you updated but we don't have Internet at home and I probably won't be leaving the house much. Thank you again for being a part of this journey.

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