Today we are, "right on track" according to Dr Kemna.  She is the Cardiologist that talked to us about Kamryn's transplant.  She will be guiding us through the next few weeks on the floor and at RMH.  Jason the Cardiac Coordinator is scheduling appointments for us.  I did make a small request.  Kamryn gets medicine every 2 hours.  I asked if her medications could be clustered so that I could go to bed sometime.  They didn't seem to think that was a problem.

I have alot to learn!!!!

2-28-2012
I'm sorry I haven't posted for a little while. I do find myself busier on the floor. Diaper changing and holding the baby without having to ask is the norm around here. I will be learning meds and other things this week. Mike and I will be taking some training in preparation to go home. The preliminary Echo looks good. This is the baseline for future rejection testing. Kamryn continues to gain strength as each day passes. The binky training is slow. She will go home with an NG tube. Before leaving the hospital we will be doing all of the care for 24 hours. Then we will go to Ronald McDonald house before going home. With meds on a crazy schedule, I don't know when there will be time for sleep. For now, It's bed time!
2-27-2012
A few months ago I brought home a baby with a smiley, content, and sweet disposition. As she continued to get sicker she would furrow her brow, was grumpy and unhappy. She had Dr Law say, "No attitude" I have begun to see that smiley, happy baby again. She coos, smiles and warms my heart. She continues to get better. It's up to me now, to learn her medications (one of which is a shot) and to begin administering them. The rest of the wires come out of her tomorrow. Home is looking closer and closer.

Nothing in life prepares you for a sick child.

Two months ago today my heart was breaking.  I couldn't look up and see the parents whose hearts were aching as much as mine.  My tears were flowing and blinding me from the hurt around me.  Now that Kamryn is becoming healthier, I see their pain. I met a mom several weeks ago who's daughter was born at 24 weeks.  She has not been able to get off the ventilator and now has a trachea.  Or the mom whose child has leukemia.  The family at the Ronald McDonald house whose daughter has pulmonary issues.  Or a mom at home whose baby has a bad cold.  Nothing in life prepares you for a sick child, we each have our own crisis. There is no degree of sickness that changes the way we feel about our children.  If we could stop it or take it on ourselves, we would.   It has been a wild ride down the river of crisis.  We held on to each other and the little glimmers of hope that were thrown to us by the Doctors.  Prayer was and is our life boat.  Many joined us on this ride with prayer and devotion.  While Kamryn's heart condition is gone she will have the disease of transplant.  Her body will always be looking to get ride of the foreign heart inside her.  She will always be on medication.  I will always be watching for sickness and infection.  But that boat that carried us down this river, prayer, will always be there to carry us down the next.  God is in control of where that boat goes and where it lands. I am blessed to know He is in control, and I don't have to worry.

Little big brother peeks through the bars at baby sister.

A week ago today Kamryn got her new heart. She is pink, beautiful and full of life. God has done an amazing thing in our lives. In the medical world hearts for babies are not common, hearts that match even rarer. God has given us a gift, and we are so grateful.

Kamryn had a very good day today. She tried some binky training and drank 4 mls by mouth. I talked to one of the nurses, it seems that the only things keeping us in ICU is the milrinone and DR. Law. Dr. Law in an incredible Dr. he is caring and careful to make the right decisions for Karmyn. When he says, "I'm worried about her", it's serious. I have seen him smile in the last few days. This is a good sign.

Kamryn was a little fussy when I came back from dinner. The nurse let me hold her, she fell asleep in my arms. The nurse took the picture.

Kamryn, Grandma, Grandpa and mommy

The IV pumps are going away!!!! Baby girl is going on all oral meds today. Both of the lines in her arms are gone. She still has the pacemaker wires and the monitors for her heart, but it is all slowly going away. I heard Dr Law say to the floor maybe Sunday. To which the women in rounds rolled their eyes. His explanation was, "She's so small just one more day."

2-23-12
Things are going great. The clot in the left atrial appendage is smaller and adhering to the wall of the heart. In time ti will become part of the heart and cause no problems. Kamryn is getting a medication that comes in a bio hazard bag. The nurse dresses up in a blue gown with gloves to give it to her. It is considered a chemo type drug that suppresses the immune system. They say it is less hazardous than what the bag and the suit lead you to believe.


Kamryn had a very good day today. She tried some binky training and drank 4 mls by mouth. I talked to one of the nurses, it seems that the only things keeping us in ICU is the milrinone and DR. Law. Dr. Law in an incredible Dr. he is caring and careful to make the right decisions for Karmyn. When he says, "I'm worried about her", it's serious. I have seen him smile in the last few days. This is a good sign.


Kamryn was a little fussy when I came back from dinner. The nurse let me hold her, she fell asleep in my arms. The nurse took the picture.

Today I held Kamryn. It has been 7 days I think since I held my baby. She is so alert and happy. Bottle feedings were to start today. She is still fragile and needs to gain some strength before we try oral feedings. Grandma may be able to hold her tomorrow. It does tire her out. She continues to get better, the drs are pleased with her progress. An Echo will be done tomorrow to look at the clot. I don't expect them to find it. Prayer has become our medicine of choice, and the Great Healer is working hard.

Holding Kamryn

Holding Kamryn for the first time after surgery.  She is doing very well at 5 days post surgery.

Isn't she beautiful!

They have her on thinning meds to take care of the clot. The surgeon came in while I was there and he seemed surprised that there was a clot. He said he's going to take a look at the echo himself because "transplants look weird" and he thinks maybe they saw something else. But he said if it is a clot they usually take care of themselves or actually just incorporate into the area and become part of the atrium. Until then they've got the meds doing their work.

New Pictures

 From Stephanie:

My day with Kamryn. One of the side effects of the morphine is the crossed eyes. I think it's super cute! She tried to fuss a little while I was there but she's had the intubation tube down her throat for so many weeks that she really has no voice. Kelli's right she sounds like a little kitten. She looks great and we got to chat for a good long time today while she stared at me (or slightly to my left) and learned how to take a pacifier again. She is a true miracle!!

 

The Aubrey's wouldn't ask...but I will!

 Hi. I'm Lexi. I'm the Aubrey's mostly crazy former and soon to be neighbor (we left for a year...the worst timing EVER. I blame my husband, and you can, too!). I thought I'd throw my two cents in on something the Aubrey's are just too wonderful to even think of asking for.  Cold. Hard. Cash.


The Aubrey's haven't complained at all about the cost of this. I've never heard them for a second question any of it. They've just had faith that the Lord will provide.

(doesn't that baby look JUST like Kamryn?!)

And we all know how He does that, right? Through His servants.

So I'm pleading with you now, think of something you can give up (Lent starts TOMORROW for those of you who observe it...don't forget...) for a week (or 46 days). Last week we didn't eat out. The money we saved we donated. It wasn't hard and we were blessed by having a couple of extra nights with the entire family around the table instead of in the car. Plus, now I don't have all of the garbage that my kids refuse to pick up rotting away in the back seat.  Got WAY more than I gave.

What can you give? Do you get a $4 cup of caffeine in the morning? I'd NEVER ask anyone to go without caffeine, but there are cheaper alternatives (I have a delightful recipe on my blog if you'd like...). What if you gave it up for just five days...that's $20!

Kelli and my Abby

My daughter, Abby, who has Down syndrome, has spent time in and out of hospitals. Nothing near the time that Kamryn has. But we understand a little how those times can be terribly expensive. Especially when the hospital is far from home. Gas and ferry rides add up. Eating out every meal, even if it's at the hospital's cafeteria, is crazy expensive.  The last time Abby was hospitalized was when I was alone with my children after my brother's wedding in Utah. My husband had to fly back from Washington to be with us. When my friend dropped him off at the airport, she handed him an envelope full of cash. I can't even begin to tell you what that meant. It was one less thing to have to worry about. To stress over. It set that area of my mind at ease enough so that it could attend fully to the crisis at hand.  Lets do that for the Aubrey's.

Plus, you'll be blessed for it. I know that for sure. We all need more blessings, right?  And less trash in the back of our cars? Am I the only one whose kids hide half eaten hamburgers under the seats? I digress.

Giveaway:
Are you crafty? Do you work for a company that looks for fantastic causes to help? If so, PLEASE contact me. Any companies that would like to trade goods for ad space are invited as well. This blog is getting a lot of traffic because there are so many people who love and care for the Aubrey's. Lots of people would see any ads that would be placed. If you'd like specific numbers I can let you know.  We've done big giveaways on other blogs before and they've really brought in some cash. My email is mostlytruestuff@gmail.com. If you'd like to purchase something specific for the giveaway (Ipads and Canon Rebel cameras always give a nice return) let me know. 

Please find it in your heart to give whatever you can.

If nothing else, PLEASE share this, encourage your friends to help.  People WANT to help, even those who have never met the Aubrey's.  They just need to know they can.  Click on the little Facebook or Twitter icon below. 

Please keep praying, too. It helps the most.

(in other very non-pressing news, if you are close with the Aubrey's and have a personal blog, will you please email me the link? Kelli would like a blog roll on here and right now there's only two blogs on it, and one of them is mine, so really, it's like there's only one GOOD blog on it)

Lexi

I just heard her voice she is mad!

On another note. She has a clot in her left atrium. The drs are working to get it thinned out. If it decides to dislodge it could go to her brain and cause a stroke. Get on your knees prayer warriors the princess needs prayer.

Kamryn held court in her again in her room today. Her royal subjects had smiles on there faces. The princess had her new heart. Today was extubation day! That nasty old tube was coming out of her nose.

As I listen to drs and nurses I become increasingly aware that Kamryn's heart transplant was a miracle in their eyes too.   It is not only very difficult to get a heart this size it is also difficult to get a matching heart to a blood type  A+ person.  It is a little more difficult for an A-.  Kamryn's new heart is a match to her blood type. The surgeon said, "If the heart were on a shelf with other hearts this is the one I would have picked for her."   My friend Tammi said, "I pray that people will see God, when they see Kamryn."  

From Mike

Ok, ok. Sorry for the lack of update yesterday. Kamryn is doing well. There is talk of taking her off the ventilator but at rounds today they decided to hold off on that until tomorrow because today they want to decrease her cardiac function medication. Doing both at the same time might be too much. She is currently off the pacer and her heart rhythms are great. The last chest tube was taken out this morning so all the surgery stuff is now closed up and over with. Keep up the prayers. You guys are good!

Sunday photos

 Getting an EKG done.

Her eyes are open!

From Kelli:
Kamryn's heart still doesn't know who is in charge. This is completely normal as the heart and her body get use to each other. She is getting OG feedings now is small amounts until her tummy gets use to it. (the feeding tube is down her mouth) There is talk of weening her off the oxygen and taking that tube out of her nose. She is awake, no more face book for me tonight.

From Mike

So 24 hours after surgery and all is well. Kamryn is doing nothing outside of what they anticipated might happen. Her lung is now responding well and her oxygen levels are good. She is slowly coming out of the heavy sedation and is responding to touch and voices. Her attitude is intact which is GREAT to see. What a ride! I have had a hard time sorting my feelings today. I am still very amazed by what has happened and see it as nothing short of a miracle. A miracle that I got to witness right before my eyes. I didn't realize how much stress I was carrying until I heard the words "the heart is in and pumping" and felt an immediate sense of relief. The hopes and fears had been sorted and what I had hoped for was a reality. What I had feared no longer mattered. I believe it will take a long time before I can really work through my emotions and feelings about all of this. It all has happened so fast and much of yesterday is a blurr but the clarity of witnessing a loving God touching a tiny life is a vivid picture that I will have forever.

Let me take you back 24+ hours ago

February 17, 2012 I awoke at 8:00am to the intercom in Kamryn's room. Someone said, "Is Kamryn's mom there? I have a phone call for her." I picked up the phone to here Jason, a transplant coordinator say, " I wanted to make sure you had a good night sleep. Today is going to be a long day. We have accepted a heart for Kamryn." As my heart beat out of my chest I said, "You have a heart for Kamryn." He said, "Yes, expect her to go into surgery around 2:00." I hung up, called Mike and said, "They have a heart for Kamryn." I waited. He breathes and says, "I don't know what to think,I don't know what to feel, I don't know what to do." I said, "I know, I'll call your mom." He says, "I call other people." I called Carol. With each person I called the same reaction came. It was put on facebook and there began the prayers. When I finally got a hold of my parents in Scotland, a frustrating endeavor, their reaction was the same. Mike went to his classes in Delridge. I then decided to get ready for the day and went to RMH for a shower. I arrived back at the hospital. Jason the TC came around to talk briefly. I asked him the questions that were being asked of me. Where is the heart coming from?... He very graciously said, "I can't answer those questions." But focus them on this. President Obama is in town and it took a lot of coordination on our part to make sure the heart could get here. Don't worry it will be here, the team is on their way to get it. Children's hospital sends a surgical team out to retrieve the organs it transplants into patients who need them. This happened all before 10:00am.

Rounds were at 10:30 am. The talk was about what to do for Kamryn's transplant. Blood work was drawn, her feedings were stopped during the night, medication was given and she was being prepared for surgery. I saw the anesthesiologist, surgeon, and hospital social worker. Mike came to the hospital, he had been released from class by his boss. Thank you. Family had been coordinated to arrive at various times. Kevin, Stephanie, Charlie, Teed and Haeley came first. Kamryn's team of nurses and a different anesthesiologist came to further prepare Kamryn for surgery. She was given medication to knock her out and the procession to the OR started. That turned out to be a dress rehearsal. The heart at the other location had not been clamped off yet, and wasn't in the air yet. We went back to the room, the team decided to place some lines into Kamryn while they had her asleep. The family went up to a waiting room upstairs. Mike and I stayed and awaited the next processional to the OR. It came at about 3:00pm. We walked down the long corridor to the entrance of the OR. I couldn't reach Kamryn to kiss her on the head so the anesthesiologist moved her on the bed. I kissed her little head and told her to "be good". Mike kissed her too. And then we walked back to her empty room and sat down. Although I didn't like the empty room, I was at peace.

 Those of you who read this and have no faith or hope are going to say, "How can you be at peace? You just sent your 9 week old baby for a surgery that could end her life." To you I say good question. My peace came from knowing God has a purpose for all of this and he will use it for good. She was in his hands and would take care of her.

 Now the waiting begins. Mike and I joined our family upstairs and began the waiting. Grammy, auntie Beth and all of the kids arrived. When a family of 6 arrive anywhere it changed the dynamics. There were 15 of us in a waiting room. People looked in and some were brave enough to come in. While there I caught the eye of a young mother. We later talked about Kamryn and her daughter (age 7 with leukemia). She couldn't imagine what we were going through, and I couldn't imagine what was happening to her child either. We exchanged "I will pray for your child." and off she went.

 There are stages to a heart transplant. A lot of waiting is done because of the coordination and the timing of the surgery. I have been carrying a pager around with me for weeks. It hadn't ever gone off before. It buzzed at 4:40pm. I called the number, they said "The surgery has started." It buzzed again at 5:00. I called they said, "She is on the bypass machine." At 6:00 it went off again. I called, "The heart is in and beating." This is the critical moment. The surgery could go well and there could be no other problems but if the heart doesn't start beating... Well you get the picture. Anyway there was joy, celebration and tears in the waiting room. After a heart is transplanted the surgeons wait around and watch it. Rhythms are checked, leaks are fixed, tubes are placed along with wires for a pacemaker. With this surgery the heart is sometimes a little large,the new heart doesn't like it or there is swelling that causes them to leave the chest open. This is not the case for Kamryn. Her chest was closed and she was taken back to her room. I hope never to have to have a pager again. My heart beat out of my chest with each buzz. Mike and I spoke to the surgeon later. He was pleased with the surgery and the new heart. Mike and I were able to see her after the surgery. She looked pink and beautiful with rosy lips.

This morning... I woke up to the changing of shifts and the sound of nurses talking about Kamryn's lung. It seems to still be partially collapsed. The surgeon came in a little later and was not surprised by the partially collapsed lung. He is confident that the lung will be inflated fully and will function soon. I have learned that if there are NOT 6 to 10 people in your room and they are NOT acting like a well oiled machine you are probably NOT having a crisis. At 8:30 am I need a nap. Continue with your prayers. We are in a very critical healing time period. Kamryn send her love and thank you to all who prayed for her yesterday.

After surgery last night Kamryn came back to her room. Mike and I got to see her. He stayed with her and took family members to see her also. The boys and Brynn think her incision is way cool. I went down to urgent care where Mikaela Rae Aubrey, Tyler Brown and Laurie Bucy Shepherd were waiting. Mikaela was still not feeling well. The the urgent care would later send her to ER where they could order more test and do a work up if needed. In the mean time Kamryn was having issues with the breathing tube. It was to low and in her right lung. The lung collapsed. Mike said they basically inflated it by hand, with a pump. Mikaela had and ultra sound several drs poked and prodded on her. It was ruled not to be appendicitis. She went home to rest at 1:30 am. Mike went back to RMH, I went to Kamryn's room. I just stood there in awe of what had just happened to our sweet baby girl. And then I went to bed.

'eBeth Aubrey Dyrdahl, Mike's sister, "She is out of surgery and in her room. The surgeon said he could not have asked for a better outcome. Even the surgical team was awed by the experience because they don't do this very often at all. There is much joy and gratitude amongst the staff just as there here in the waiting room. The piles of wadded tissues and empty Starbucks cups tell only a part of the story of this day. Thank you for standing with us all. Those are small words for enormous gratitude. We are so aware this gift came at great cost, and that Sovereignty covered every minute."

Kamryn's new heart is in and beating!

For those who have asked how to donate.

5:10pm

She is on the bypass machine now. That means that the heart has arrived at the airport.

Off to surgery

From Mike: And she's off to surgery. This was just as they were taking her out. We were able to accompany her most of the way and love on her some before they took her in. Surgery should be between 4:00 - 4:30. Please, please pray that all goes well.

Prayers are being said . . . .

Hello this is Janet Gatlin a friend of the Aubrey family from church. I have a special place in my heart for all of them. I got the text this morning from Stephanie around 9:30 that they have a heart. My first reaction was what an answer it prayer. I called my husband to share this happy news and I said "they found a heart" and tears fell as I shared this news. I am so happy for them and sad at the same time. We all know that a family lost their precious baby for Kamryn to get this wonderful gift. Prayers were said for this family to be comforted in their time of grief and for everyone involved in getting the heart to Kamryn safely. Now that I know she is off to surgery I can not say a prayer for her without crying. God is so good !!!!!!! I will continue to pray until I hear the news that they are done. I love my Aubrey family so much. Mike and Kelli are amazing parents. I am so thankful for their friendship.

They have a heart! They have a heart!

The surgery is today. Pray for the Aubrey family and for the family of the baby who is giving the heart to Kamryn. What an amazing gift during something so hard.

Nasal Intubation

Moving the tube to a nasal intubation was straight forward. The aftermath was not. Kamryn would not settle down after the procedure. She was uncomfortable. The tube goes down the esophagus and to where it branches to the lungs. If the tube is to far down it can go to the left or to the right and only inflate one lung instead of two. The tube has moved itself out al ittle and she has sounds on both sides of her lungs. We avoided a collapsed lung because our nurse Kaitlyn was right on top of the problem. Kamryn has a good amount of morphine and ativan in her system now, but she is comfortable and resting. That heart rate needs to come down more but a least it isn't in the 200+.

Today during rounds a discussion about oral vs nasal intubation broke out. A tube down Kamryn's nose or a tube down her throat. Both have risks for vocal cord and throat damage. Nasal intubation can cause sinus infections and bleeding, but allows the person to have use of their mouth. An accidental oral extubation can cause severe damage to the vocal cords and throat, but less infection type issues. The question is would Kamryn benefit from an nasal intubation. I am told it is more comfortable on the patient and has less long term effects on her oral development. She could have her pacifier back. Holding her would be easier if she were intubated nasally. If you had to be intubated what orifice would you prefer?

Kamryn is doing well today. She is calm and sleeping. Her numbers are good, and she is in a stable place right now. That doesn't mean you prayer warriors are off the hook.. We are still waiting for a transplant and to go home.

Last night was tough. Yesterday she had her tube retied, it was not pretty. It is a dangerous procedure and she needs to be sedated for it. The sedation wasn't working very well and 3 people were working on her. I had to leave the room as she kept crying around the tube and there wasn't anything I could do to help her calm down. (I would have been in the way) She survived the tube tying and so did I. We both cried. While it is good to hear her voice, she sounds like a sick kitten looking for its mommy. Kamryn was given a another medication yesterday. It appears that the medication may have been the cause of her rapidly beating heart and her fever. This medication is good for her heart but hasn't been paired with another of her medications for her before. They skipped two of the doses of Captopril this morning and she was able to sleep, with the aide of morphine and ativan. She is now sleeping. Rounds are now more later.

Kamryn has had a good day. Her heart is calmer and her temperature is back to normal. Our gift to each other today was a nap. Kamryn's night should be better. Some of her 8 o'clock meds have been moved around so she doesn't get so many all at once. Thank you Mary Foote for the card today. I love that song.

Last night was tough. Yesterday she had her tube retied, it was not pretty. It is a dangerous procedure and she needs to be sedated for it. The sedation wasn't working very well and 3 people were working on her. I had to leave the room as she kept crying around the tube and there wasn't anything I could do to help her calm down. (I would have been in the way) She survived the tube tying and so did I. We both cried. While it is good to hear her voice, she sounds like a sick kitten looking for its mommy. Kamryn was given a another medication yesterday. It appears that the medication may have been the cause of her rapidly beating heart and her fever. This medication is good for her heart but hasn't been paired with another of her medications for her before. They skipped two of the doses of Captopril this morning and she was able to sleep, with the aide of morphine and ativan. She is now sleeping. Rounds are now more later.

Kamryn has a low grade fever and is not settling down well tonight. Usually after a bath at 8:00 she is ready for sleep. Not tonight. After some meds, suction, retaping the tube and a suppository (aka poop bullet) she has yet to settle down. Her heart rate remains in the 180-200+ range. Hopefully she will calm down soon. Please continue prayers for Kamryn.

Today is a resting day for Kamryn. Her BNPs are slightly higher than yesterday. The goal is to extabate her sometime this week. However, she may react to the lower vent settings and not want to be extabated. She will let us know. That is a decision for another day. Today we rest!

Mikaela

I got to watch Mikaela play soccer today! I love, love, love watching her play.

Kamryn remains on the breathing tube, with some higher settings than before. The breathing tube is not because she has a hard time breathing. It is so that her lungs are expanded and her heart has less of a space to work in. This causes the heart to contract more effectively. It is working. Her BNPs are down to 1240 from 3400 a few days ago. It is amazing to me that something minor like a fever could create such a change in her health. (her fever is from the immunizations) Her lungs are clearing and her kidneys are doing better. The kidneys were never and issue they were just working hard. She looks good and is awake more during the day. Today I changed her diaper, normally that wouldn't be something to post. I haven't change her diaper in 14 days. It's the little things that make you smile.

Kamryn's 2 month shots made her quit unhappy. She had a fever last night, and was grumpy. Today,the fever is gone, but they decided not to do the extabation trials, her bnp is up to 3400 today. Kamryn's lung is clearing, the xray looks better today. She continues to have air in her stomach that causes her to vomit when she is moved. The nurses continue to practice clustered care and therapeutic neglect for Kamryn. She appreciates that.

Today, I got to hold Kamryn. It always makes me cry. Her temperature was down, but her heart rate was up, and she hadn't slept for 4 hours, before I held her. Her heart rate got lower and she finally went to sleep in my arms. She is now sleeping peacefully in her bed and her heart rate is still down. Thank you nurse Jen!

I got to hold Kamryn

Today, I got to hold Kamryn. It always makes me cry. Her temperature was down, but her heart rate was up, and she hadn't slept for 4 hours, before I held her. Her heart rate got lower and she finally went to sleep in my arms. She is now sleeping peacefully in her bed and her heart rate is still down. Thank you nurse Jen!

Kamryn held court in her room today. The Doctors and nurses crowded in to do rounds. It was decided to hold off on the extubation. They are fine tuning her today in preparation for possible extubation closer to the weekend. I'm not sure Kamryn's subjects are doing what she wants. But they are most definitively doing what is best for the princess. She will get blood and her 2 month shots today.

Kamryn was tested for this: She doesn't have it. Cytomegalovirus (CMV), a member of the herpes virus family, its very common. Between 50% and 85% of people in the United States have had a CMV infection by the time they are 40 years old, according to the Centers for Disease Control and Prevention (CDC). It lies dormant and is transmitted through bodily fluids. This is not good for transplant patients. If I have had it I won't be able to give her breast milk. I will be tested sometime today.

Kamryn needed her intubation tube repositioned. It had to much play in it, that isn't good for her throat. In order to do that they give her "Vec". It paralyzes her, she doesn't move and is like a rag doll. Of all the things that happen to her, for me this is the hardest to watch. She doesn't move, she doesn't respond and she isn't mad at what is going on. The nurses take advantage of her non combative state and get everything done so she can sleep. For this I am grateful. She is gaining weight and length. I hope they get to take the tube out soon.

The plan for today is to chill and watch the Super Bowl. Our nurse decided she would root for the patriots because their quarterback is cuter. For Kamryn: Her medications will be left alone she is very "tacky" but the doctors want to see if its the medicine or or she needs more diuretics. She is getting rest and trying to grow. She still fights when irritated, but is easily consoled and calmed.

So what can I say, What can I do, But offer this heart O God.Completely to You So I'll stand, With arms high and heart abandoned, In awe of the One who gave it all
So I'll stand, My soul Lord to You surrendered, All I am is Yours (Hillsong United) This are the words that have been going through my head from the time Kamryn was listed for transplant. It gives me peace that God is in control.
Baby is doing well. If all goes well they may take the tube out. She would so much like that to happen. She has to be able to maintain temperature and have good urine out put.

 Kamryn has some fluid on her left lung. This is not uncommon for her heart condition or for children on a ventilator. At this time it is not infected nor will it prevent a heart transplant when she is listed. The nurse is watching closely and so am I. Please pray that it doesn't get worse or become infected.

 From my friend Nancy Elizabeth Abercrombie Doyle: At times, we all face challenges, heartaches, and tragedies that make us wonder: how can what is happening in any way be good? The simple, yet hard to understand, answer may be that we will never know. However, our comfort comes from knowing that everything that does happen will somehow be worked together by God in reaching a beautiful result." (see Romans 8:28) I hope you have a miraculous day today my friends! – Elmer Laydon

I got to hold Kamryn, intubation tube and all! Her very sweet nurse Jennifer asked if I wanted to hold her. As a mom herself she couldn't imagine not being able to hold your baby. She took the time today to make it happen. Kamryn was calm and slept while I held her.

Today the cardiac team is "tweeking" Kamryn's meds. Tweeking is an official word in the medical field. Dr S Law told me they would be presenting Kamryn's case to the board tomorrow. She should be listed for transplant by the end of the week beginning of next. Her night was good. The nurses have found that she likes sleeping on her tummy. Me too!

Kamryn had a good night. She got a bath. I had asked the nurse on Saturday not to, I didn't think she could handle one that day. Her arterial line needed to be changed last night too. She needed to be sedated for the dressing change, because of the danger if she moved. Just a slight wiggle in Kamryn's finger would make the nurse stop and wait for her not to move. The Drs are trying to get Kamryn off of one of her rescue meds again. They hope to take her off the ventilator within the week. They are working with Kamryn's time line, she does dictate what goes on concerning her care.

My boys would love to watch what's going on at the construction site today. A new wing is being built here. On the other side of the site is a crane. From that side of the building the crane operator will pick up a large box (bigger than your car) and blindly bring it around beween the two buildings and down to the 5th or 6th floor. Okay so there is a guy with a walkie talkie telling him what to do, but the crane operator can't see this side of the buildings. The workers who are attached to the building by harnesses lean way out and grab the large box and pull it into the building. Then it happens all over again.