Monday, March 26, 2012

Requesting Prayer Pictures for Addie's May 8 transplant!

6 weeks from today Addison will be going through the biggest surgery of her life. 6 weeks from today, my baby and I will both be in adjoining operating rooms involved in a double surgery that all up will probably take close to 10 hours. 6 weeks from today my mom and dad will sit in an unfamiliar waiting room in California with their daughter and granddaughter in surgery while my husband sits at home in Texas with our baby boy waiting to hear his wife and daughter are through surgery. 6 weeks from today we will be at Stanford University because the surgery is so complicated and so scary that no hospitals in Texas feel prepared to do it. Most importantly though, 6 weeks from today Addison will be given more than my kidney- she will be given a future and a life free from daily hospital trips. I don't think I've ever felt the strong combination of dread, excitement, fear and hope all for one day quite like I do when I think about May 8.

Addison is the most delightful baby. We walk into a store and she starts waving and smiling at everyone she sees. She gives hugs and kisses and breaks into the biggest toothiest smile when she sees someone she loves. She is stubborn and smart and creative and funny. She rips her glasses and hearing aids off her face with a vengeance, she pulls her brothers socks off and tries to bite his toes, she knows who she can get away with things with and plays everyone. She is equal parts adorableness and pure trouble. Basically she is a typical one year old. Only her life has been anything but typical. Addie spent the first 8 months of her life in the NICU. She was diagnosed with Congenital Nephrotic Syndrome when she was 3 weeks old and developed a life threatening Strep B infection that week that earned her and her brother an ambulance trip to the big hospital in the city. At 6 months old, her kidneys had both been removed and she started dialysis. One week into dialysis, Addie ended up in congestive heart failure from fluid overload and gave her family the biggest scare of their lives. After 3 blissful months home on peritoneal dialysis, Addie ended up in the PICU with dialysis fluid in her chest. Three weeks in the hospital later, Addie comes home on Hemodialysis, something we had hoped to avoid. 2 months on Hemo and all is well until a simple g-tube surgery causes Addie to become very hypertensive. 4 days in the ICU, a week in the hospital and Addie came home on 4 blood pressure meds around the clock.

Addie is awesome at so many things. I mean I know I'm biased but I think she is brilliant and totally rocks at stacking cups and her helicopter toy. She does not, however, rock at dialysis. She manages to find complications the doctors did not even know existed. For that reason and because of what a difficult few months of dialysis she has had, we strongly believe this transplant is the absolute best thing for Addie. We prayed fervently before making the decision to take Addie to California to get this surgery. We all believe wholeheartedly that God is calling us to do this for Addie. My mom says God calls us to radical faith and heading off to San Francisco for the summer for a surgery with plenty of risks is definitely radical. It's scary, it's huge and it's not going to be easy for any of us. But we know it's where we are meant to be.

So on May 6, my mom, my dad and Addie and I will leave for her May 8 transplant (we are going in a few weeks for a 3 day pre-op trip also). Al's parents will arrive here and stay with him and Max. We have not yet decided if Max and Al will join us at some point in California. It depends on a lot of factors and it is just too soon after Max coming home from the hospital to tell if he is up for that or not.

One week after I found out about their kidney condition I asked my OB to look up my blood type and found out I was a match. I knew that day my kidney wasn't mine anymore, that I was just housing it until one of them was ready. The way I see it, she stole my heart, inhabited and forever changed my body- she may as well take my kidney as well. It's no less hers than the rest of me. The fact that I'm a match and can give it to her is the second greatest privilege of my life after having carried them for 7 months. I am nothing but thrilled to be giving it to her.

I have decided that over the next 6 weeks while we prepare for this huge day, I want to do something for Addie, for now but even more, for her in the future. I know there are hundreds of people praying for her and I want to ask ALL of you who are praying or sending Addie love and well wishes for a HUGE favor- I want to make a photo wall and photo book of prayers for Addie for May 8. My dream is to cover Addie's hospital room walls with photos of people and their prayers so that every person who walks in Addie's hospital room will be blown away by the love and prayer being sent for this little girl. My prayer is that her room would be covered in prayer, literally. That when my mom sits in Addie's room after surgery while I'm off in my separate room recovering for a couple of days that she will feel surrounded my the faces of those praying for Addie. And that as Addie grows up, she can look back and see just how loved she is and how covered in prayer she was on that monumental day in her life. So here is my plea- I want a photo of each person praying for Addie holding a whiteboard, poster or piece of paper with a prayer, a hope, a wish, a memory, a Bible verse, or simply an ‘I love you’ or ‘I’m thinking of you’ for Addie on it. I am wanting you to send just the photo of the message, not the actual poster! My friends have so generously agreed to model for you (with names and messages made by me of course!)...

What I'm hoping is that all of you who are reading will send me your picture and ALSO pass this request to every person you have ever told about Max and Addie and ask them for a photo as well. I would love to get photos from people all over the world who we may not have seen in years and who we may have never even met or heard of. I get told often by people 'my parents/friends/co-workers are praying for your babies too' so if you have people who ask you about the babies, please grab them a sheet of paper and grab your camera/phone and send me their pic too! If you don't mind linking things, I'd LOVE for you to link this to your Facebook page and ask your facebook world to join us in praying for Addie and ask them to send me a picture and a prayer for Addie for her big day. Feel free to print this and share it at work or with neighbors. We would love to have hundreds of people thinking about Addie and praying for her in 6 weeks.

Here is the thing- the most important thing is just to know that people are praying so it doesn't have to be a fancy poster. I made a whiteboard for her that I'll carry with me so you can write her a message on that if you see me. But, seriously a sheet of white paper with a quick note on it is fantastic. I have perfectionist tendencies and could totally see myself deciding I needed to make the world's most beautiful poster and then keep putting it off because I didn't have 3 shades of pink glitter and then spend hours trying to make my note rhyme, only to end up not getting it done because I never had many hours to do it perfectly! So please know we just want to know you're praying and so simple messages are awesome!

So grab a whiteboard for you and your family and friends, or decorate a poster or jot something on paper and have someone snap a picture of you. Then ask your family and friends to do the same! Group photos are good but we'd prefer individual ones just for the effect of covering Addie's walls in photos that I'm going for. If you have an adorable baby or child, feel free to write a note for them and send me their picture too! One request is that I would love you to include: your name, where you live and how you know Addie (or know about us). We'd love to hear from people who are friends of acquaintances or people who stumbled upon this blog! When we realize how many people we don’t even know there are praying for us, it blesses us so much so this is not a favor for just our friends but for everyone!

As we get closer, I'll share some really specific prayer requests for May 8 and the days that follow. Our main general requests are for no complications in surgery, that she will quickly come off the ventilator, that her blood pressure will be stable, that my kidney will very quickly start making urine for Addie and most importantly that her body will NOT reject or damage the new kidney. And of course all the usual things just that Addie will be strong and happy and experience minimal pain, fear or confusion during this time.

So snap away with a camara or phone and then email them to me at or text your photo directly from your phone to me at 936 689 7238. Start sending pictures right away and I'll start printing them and making her keepsake book and spread the word for people to be praying for sweet Addie leading up to, on and after May 8. (Oh and if you do not want your photo here or on Facebook, just let me know because I will probably post some!)

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