We do not really have an update but this is what we know so far. The only place in the nation that does infant transplant is in Houston, TX, this is where the list of scenarios comes in. Amanda and I have been talking about every possible option to try to plan for this, if that is even possible. All of Eden's medical information was sent to Houston yesterday, Monday. The transplant team will meet to look over her chart and information to see "if she is a good candidate." This is extremely nerve raking. It’s Eden!! how can she not be a good candidate, but it is more complicated than that. Amanda and I are also judged if we can even handle this, give all of her meds in the future, bring her down for follow-up, etc. The transplant team will meet on Wednesday the 9th, and we will find out after, we are not sure the time frame of when we will find out but we will share the information when we find out. The video below was a suggestion from one of our doctors, he said that we should send a picture or a video of Eden so that the transplant team can know Eden Hedin not Eden Hedin patient #12345……
You many have to paste the link into a new window.
http://www.youtube.com/watch?v=9pgWNFL6AzQ
She is so beautiful. What a wonderful video. I know we don't know eachother personally, but I pray for you every single day...multiple times. Know that you..and Eden...and every single doctor involved...are completely covered in prayer! You are an amazing family!
ReplyDeleteGorgeous video! Many many prayers offered up for your family.
ReplyDeleteYour family is in my prayers. I have been following you since before your twins were born. I was on bed-rest with my twins across town at the U of MN at the same time. Your family is beautiful and God is good.
ReplyDeleteWow...I hadn't checked up in a little while, no idea things had come to this. I am so sorry you two, I can't imagine the stress you are under. Man I was hoping that by this time both the kids would be in the clear. sigh.
ReplyDeleteI hope this all goes well, is there anything we can do for you besides pray? Please let me know if we can do anything to help you through all of this. If you need a recommendation as to your ability to handle all of this for the hospital in Houston...funds for the trip...whatever it is, just let me know and I'll see how I can help!
Such a beautiful video, Eden is so precious! We will keep her and your whole family in our prayers.
ReplyDeleteHi,
ReplyDeleteI just came across your blog. I want to let you know that I was a born at 27 weeks (in 1980), weighed 1lb. 15oz., had PDA surgery, and spend 92 days in the NICU. I am now a 30 (almost 31) year old wife and mother of two young children. I am a healthy and happy human being. I'm not writing all of this to brag, rather to give you hope that all of your love and care will endure. I literally owe my life to my Mom. She is the reason I am the person I am today. She said I was a fighter but you know what...so was she. She fought for me everyday. Hang in there. I pray that your girls will be able to do the same in 30 years.
I am a fellow "October Bumpie" and have been following your blog for a long time. I just wanted to let you know that my prayers and that of my family are with you. I also wanted to let you know that God is working through you and you and your girls inspired my husband and I to make an important decision for our son. God bless you in your journey...prayers are with you!!!
ReplyDeleteAmy
Amazing video!! I got goosebumps all over :) I love her smiles :) I'm a fellow nestie that has been following your blog all along. Praying for ya'll!
ReplyDeleteWhat a beautiful little girl. Your family will continue to be in my prayers and thoughts.
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