Back in the hospital...

An update... While listening to Kamryn's heart this morning I found it to have some irregularity. The count being the same the rhythms not. I called the Dr, and we were asked to come into the clinic. Kamryn had blood work, two echos (the machine failed to record the first one) and an EKG. From the Echo I was able to see what I had heard. I now knew I wasn't imagining a weird heart beat. The EKG told the Dr where to look. It was in the Atrium. An irregular heart beat in the Atrium is treatable, in the ventricle not so much. There is a possibility that this is rejection but he doesn't think so. She doesn't have the other signs of rejection.
What he thinks is happening is.... Kamryn's Old Atrial node is trying to take over the Atrial node of her new heart. When a child has a heart transplant part of the Atrium is left and grafted to the new heart. The atrium is where the node is, it sparks the heart into squeezing. (Like the spark plugs in your car start your car.) Only there are not electrical impulses to the new heart, it has no connection to the nervous system. However, sometimes there is a connection made between the old and new nodes across the scar tissue. Thus, the irregular rhythm, the nodes are in competition. Dr Law sited one other case where there was connective tissue between the two nodes. This is a very rare occurrence. So basically the heart is confused and doesn't know who is the boss. It has a lot to learn.
We will be staying here at the hospital at least overnight. If they can't prove it is the nodes fighting, then we will be on rejection protocol and will stay her for another 5 days. We would really like to be at home. She just woke up crying, as if she was in an unfamiliar place. Thank you for praying.

Kamryn is a part of a great story God is creating in our lives.  Her story became part of your lives and part of more miracles yet to be discovered.  She is continuing to heal and grow.  There was an echo this last week that shows some signs of change in her heart.  Children's uses Echo cardiograms to determine rejection for the heart.  We are carefully watching her to make sure she is doing well.  Changes are made to her medications to prevent rejection and to insure she is doing well.  Please continue to pray for us as this is a difficult thing to have constantly in the back of your mind. As well as the adjustment to being home.  She is a joy that we didn't expect and one we almost lost.  God is good and will continue to bless us with her.  She is such a sweet baby, well tempered and happy.  (It might be the morphine and adivan, we will know as soon as she is weaned from them.)  Thank you for your prayers and support.

.  This is Kamryn the very same baby 4 weeks apart. A new heart, a global prayer support team and an incredibly gracious God.

March 23rd from her Mom.. 

WE ARE GOING HOME! After 3 months away from the family and friends we have got the clear to go home. Yes, Dr. Y Law was hesitant. He such a great Doctor. There is some concern with Kamryn's Echo today. The heart looks a little different and could mean signs of rejection or signs of one of the medication remodeling the heart. We will see. In any case we are changing some of the medications and will wait to see at our visit next week. Please continue to pray for our little girl. She is growing and changing rapidly. We have some small developmental concerns. She has some catching up to do.

March 23rd from her Dad...
So today is the day we've prayed for. Kamryn is coming home today. Not just for the weekend, but actually coming home. She is doing so well and we all know that the huge blaket of prayer from all you faithful warriors has everything to do with that. We have a long road ahead still but I believe the worst part is over. I cannot begin to tell you all how greatful we are to each of you for the huge role you have played in this. It all is still largely a blurr, but the last 3 months (tomorrow actually marks 3 months since our Christmas Eve trip to the ER) have been an incredible roller coaster. I would ask that you keep us in your prayers. We are starting to realize that as we are coming out of crisis mode, our emotions are catching up with us. Going back and looking at pictures is painful when we realize how close we came to losing our little girl. Praise God for his protection and strength. And again, thank you all for praying us through it. Humbled

March 19th
What an amazing weekend. Kamryn and I got to go home on a weekend pass. We have family dinner, pictures, baby dedication, and cousin Kiefer's baby shower. There is nothing like sleeping in your own bed. Grammy got to hold both her littlest grandchildren this weekend. Kamryn is giving her new cousin the stink eye and may not like to share. Thank you to all who have gone on this journey with us. We are not finished yet...Dr's appointments and the like will keep us very busy. Rejection is always in the back of our minds. So far so good. Keep praying it is not only helps us but helps you. Your faith is directly dependent on what you put into it. No effort, no faith.

KAMRYN UPDATE! She is home on a weekend pass! Keep up the prayers as mom & dad get to manage all meds. Hope is up because she might be home permanently next week or so! — withMike Aubrey and Kelli Helmick Aubrey.

Gaining Weight, Growing strong

Kamryn's appointment went well today. She now weighs 8+ lbs and is 22 inches long. There is no signs of rejection on the Echo today. We return to the clinic for blood work on Thursday and another appointment on Friday. We may get let out of RMH soon. Kamryn and I would like to meet that new cousin/nephew of ours. Woowho! Stephanie Combs and Charlie Combs the new parents.

3-9-12
Sorry Kamryn's public, this mom has been very busy! The med schedule is enough to make your head spin. Everything runs around the med schedule. She is doing well. We have multipule Dr appointments next week along with blood draws, ekg, echo and PT OT appointments. My goal is to be home for Easter. Before would be nice. Please continue to pray for her recovery, she has a long way to go.

I was wrong! Hooray!

I was wrong! Hooray! We do get to go to RMH today. There are no new concerns with the new medication. Kamryn is being discharged later today!