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!

Not going to RMH for now!

Let me start by saying I love my child! She is unique and has her own schedule. Today at about 10am she decided to throw her own little LV tachycardia party. (her heart rate was really fast for about 8 beats.) Her low magnesium and blood volume may have something to do with it. She is currently getting iv magnesium and will get blood later tonight. However, this leads us to getting another medication that will slow her heart rate down. Her heart has been working out in the 150-160+ range which is high for and infant. What does this mean for tomorrows move? We won't be moving to RMH tomorrow. I am fine with that, I could tell she was a little off. We need to get this child healthy, so we don't have to come back because she is sick again. Right now she is sleeping. We plan to continue with the 24 hour testing so that we can just be discharged when the time is right.

24 hour test

A few things need to be tweaked for Kamryn before we get to go to RMH. We start our 24 hours of care today at 2:00 pm. Mike and I will be completely responsible for her medications, feedings, and over all well being. I need to get a system in place for when we go home. That will come soon enough. I have an idea we will see if it works. Please pray that this next 24 hours goes well. Thank you

A tall Aubrey?

From 3-6-2012
Kamryn will be the first of my children to be in the appropriate sized clothing at the right age. Keep in mind she only weighs 7 lbs. However, she is 53cm or 21 inches and is to long for Newborn clothing. The right weight for newborn clothes. Do you think she might be tall someday?

From Stephanie Combs:
This quote from Anne Lamont made me think of you!

"When God is going to do something wonderful, He starts with a tough situation. But when God is about to do something amazing, He starts with an impossibility."

I am NOT happy about this...whatever it is!

Two weeks ago her heart rate would have been at 200+. There would have been no sound coming out of her because of the vent tube. Nurses would have come in and given her something to calm her down for fear she wouldn't make it beyond the cry. What a difference. This happy, health, mad cry fills me with joy.

Yesterday was a busy day.  I met with the pharmacist, Dr Law and Keli the transplant coordinator.  We got a rundown on Kamryn's medications.  Dr Law talked with us about a study be Roche the pharmaceutical company that produces a drug to fight CMV.  Not all of you know the whole CMV story.  

Cytomegalovirus is a common virus that infects 50 to 80 percent of people at some time during their lives but rarely causes obvious illness.  It is mainly a problem for certain high-risk groups, including: unborn babies whose mothers become infected with CMV during the pregnancy, children or adults whose immune systems have been weakened by disease or drug treatment, such as organ transplant recipients and the HIV community.   

I could give Kamryn CMV through breast milk.  It was decided to have her tested and then to have me tested. She was negative, I was positive for having had it not for having it now.  If she had an active case of it at the time a heart became available then she couldn't have the heart transplant.  So I stopped breast feeding her.  Everything I had ever know about how good breast feeding is for the baby got thrown out the window.  While my brain knew this was the logical answer my heart didn't like it. Dr.Law knew I had a big inward battle over that.  He approached the subject with me gently.  When he came back to talk with both Mike and I, I was ready to wage a battle against CMV.  The heart Kamryn received was positive for CMV.

The study is to determine how much medication to give an infant to suppress CMV.  It is unknown at this time what dosage is correct for a child her size and age.  She is about 7 lbs now.  This study is world wide and 16 children will be tested.  She is number 9.  Some data has come out on the first 3 but we are not aware of the results other than no adverse effects were seen in those children.   The testing runs for 2 days and blood work is taken over a course of 5 days.  The medication will be administered and blood work done while we are in the hospital.  

After signing the papers to be a part of the study Keli came in.  We talked about signs of rejection,  medications and visitor policies at home.  There doesn't seem to be anyone who knows when we will be going HOME.  I hope soon. 

3-2-12
Kamryn's day was filled with ups and downs. She started vomiting shortly after rounds today. I only lasted a little while and then she got the dry heaves. I could be from the medicine, or the higher calorie feed, or .... Who knows. On an up side her brothers and auntie came to visit. The last of the glue is off her scare and it is healing better. next week we may be going to RMH for a while.

Withdrawls

Kamryn is doing well. The morphine and adivan weening is going okay. She seems to need the morphine just prior to when it is given. She was being given tylenol before to help with the intermittent pain. The pharmacist decided to take that away. I will ask for it back tomorrow to help with the withdrawals she is having. Her scare looks good. It's hardly noticeable.