To good to be true

She is back in the ICU. In the past when I pictured the day Ash was released from the hospital this is not what I visioned. I thought of a happy day of celebration. Unfortunately Ash has been readmitted to the ICU on the very same day she was released from the COOP care. Ash has struggled with elevated blood pressure for sometime, but tonight her BP has become to low. Additionally her body is not holding enough oxygen (desating) and thus she will need to go back on Oxygen. When I spoke with Trish tonight she was very concerned and worried. Ash has been crying and whimpering all day and this is just not her. I know that Trish has a very good mother's intuition and so I encouraged her to call the transplant coordinator and report her concerns. She took Ash to the treatment center and there they have decided to put Ash back in the PICU. Please pray for them tonight as it will be another long, restless night without sleep. I sure the big blue chair will be waiting for Trish in the morning. Perhaps next time she is released it will be more like I imagined it to be.

Goodnight again,

DAVE

She's Out

Great news, Ashley was officially discharged and is out of the hospital tonight. I debated on whether or not to type this tonight, but I decided to let you all share in the good news. The reason I hesitate is that Ash has had a very bad day and has done nothing but cry and whimper since 6 am. They released her and made them move out, but didn't really take the time to examine her and see the problems. Trish is on the phone right now trying to reach the transplant coordinator to see what we need to do. So yes, it is great news that she is out but I have to be cautiously optimistic because she may be right back in tomorrow. One thing I have learned lately is to not to excited about progress. We just never know when things will turn around. Tonight I pray that Ash will not have to be readmitted the day after she was released. Please pray for Trish. Although we have been looking forward to this day for a very long time things are a bit scary. Trish is excellent at taking care of Ash and she is completely capable of providing all her needs, however the task is quite daunting. A home health care company came by to visit and left a bag with 21 different drugs in it and a very complicated schedule. The job seems overwhelming for her now, but I know that in a few days she will have a system worked out and things will get easier over time.

Tonight I have so many mixed emotions. I am so excited about the TPN being discontinued and at the same time I am so anxious and worried for Trish and Ash. We are so very aware of you prayers and I ask that again tonight you please pray for Trish and Ash and that we can make a smooth transition out of hospital life and back into the real world. Please pray that we can work out the logistics of getting Trish moved into an apartment and getting a vehicle to Omaha. Thank you so much for being a part of Ashley's Story by lifting my girls up to the Lord in prayer.

Goodnight,

DAVE

Numbers

There are a few numbers in Ashley's life that will forever be remembered. Just like everyone else she has a birthday 8-4-05. She has another very important day that will forever be celebrated 7-6-2006. That is "GOTCHA DAY" the date that we officially and legally adopted Ash. Another number to be celebrated is 9-26-2006. This was the day she received her organs and her second chance at life.

I am very happy to report another number in Ashley's life.

11-30-2006 4:14pm

That is the time the TPN was removed from Ashley's life. We are so excited for this number as it is something we have prayed for for well over a year. It is so exciting to see her body absorbing nutrients and putting on weight.

I have to run Allie to tumbling so I will be back later to write more.

DAVE

Morning Messes...

In some ways living in a hospital setting with young children is really not that much different than living at home. Messes still happen! Every morning between 5 and 6 a.m. a nurse arrives in our room to draw Ashley's daily labs from her line. Sometimes Ash sleeps through this process allowing me to continue pretending to be asleep and keeping my eyes closed tight so my body wont actually realize that I am awake. This morning unfortunately that was not the case. Ash became aware of the nurse and all that was happening so after the nurse exited I was forced to get out of bed and start our day. It began with a diaper change, which after the one I changed late last night filled with yucky blood, was pretty uneventful although she was irritated with me. Then it was time to empty her ostomy bag. For any of you moms out there who have had to empty these on one of your precious little ones you know from experience that it is never pleasant. ( I giggle to myself as I am remembering my sisters reactions each time I would vent Ash's bag. They would hide their noses in their shirts or under a blanket!) Anyway, I had it emptied into the little specimen cup and had set it down on the bed (big mistake, I am still learning as we go) to seal and tuck her little bag back into her diaper when all of a sudden Ashley decided to hurry me up a little. She began to kick her legs at me because one lesson she hasn't yet learned is patience and over the cup of yucky, smelly, nasty you know what went. It was every where! All of her nicely washed, soft, yummy smelling blankets I had stacked onto her bed were covered in it. Not to mention her legs and my hands and arms. So much for hoping to jump back in bed after a quick diaper change! I am praying this is not an indication of how our entire day will go. So after changing sheets, jammies, another diaper, and throwing in another load of those blankets, I finally tucked my little one back into bed and began her morning round of meds.

Now I have decided I could look at this "mess" in a couple of ways. I could have allowed it to make me very grumpy because I didn't really want to wake up yet, and I could have become completely frustrated with her impatience over my slow techniques. Instead I decided to laugh at this stubborn little girl. This little girl who I prayed for. This little girl who stole my heart years before she was ever born. This little girl who despite all that she must endure still manages to smile at me while I clean up the "mess" she made this morning. This little girl who amazes me by the strength she shows each day. This little girl who can bring tears to my eyes with just the thought of who she will become someday. This little girl who has managed to steal her Daddy's heart with her smile. This little girl who came into our lives and finally made our Allison a big sister. This little girl who brings tears to the eyes of a big brother who found out she may finally leave this hospital. This little girl who really does leave her fingerprints on the hearts of those who read her story. I could go on and on for a lifetime about this little girl, but I promise I won't. This morning I am just so happy to have this little girl in my life to make "messes". Now that she is asleep, I am going to go take a quick shower to clean the "mess" off of me and try to get out before she is able to make any more "morning messes".

Take care today and enjoy each and every "mess" you have the privelage to clean up today. Love you guys. Trish

Good night, again

How frustrating! I typed a very long message and then it just disappeared from the screen. I have no idea what happened, but I will attempt to re-do a little of it.

Ash is now awake and fussy, but earlier as I was typing she had just drifted off to sleep after we had given all of her 9:oo meds. It takes close to an hour to prepare and give them all. So far she has been still enough to hold them all down, but now she is stirring and I am praying that she does not begin to lose them. Tonight I counted her list of meds for the kids and there 15 scheduled meds and 6 as needed on her list of daily medications. This is so unreal! It is so hard to believe that her tiny body can take so much. The immuno suppresive drug is the hardest for Ash. Within minutes she begins to whine and get cranky and start feeling miserable. This is also the drug that causes her to lose her hair. It amazes me how this one drug can be so vital to her survival but yet it is also so devastating. (O.k. maybe losing your hair isn't considered to be devastating, but when you are attempting to raise a princess good hair is pretty important.) I am just glad we have a large supply of those big hair bows. Theres not too much a good hair bow can't cover up!

My heart was so blessed as I talked with Blake and Allison tonight. They are thrilled at the possibility of Ash being released from the hospital. Dave told me they actually had tears in their eyes as he shared with them the potential good news. They were genuinely excited. In my opinion the two of them are carrying this load pretty well, and they have never one time complained about me being gone. They just want so badly for Ash to be well and to be allowed to move home. My heart is smiling at the possibility of seeing all 3 of the kids tucked in around the tree in their Christmas jammies. I know Blake is cringing at that sentence but he loves me enough to put up with it for my pictures.

As we think about the potential of leaving the hospital in the near future, I can't help but to think of all of our new friends. Please remember to pray for Chloe, Skyler, Caroline, Davian, Timothy and Mariah. Each of these precious children are struggling and succeeding at different places along their transplant path. One thing they have in common is the impact they have made on my heart. I will never be the same after knowing them and loving them. Transplant has bonded each one of these to my sweet Ashley and to my memory for a lifetime. God has truly used Ash's illness and transplant as a gift in our lives. It has opened our hearts to children and families who we would have never known without it. It may be difficult to believe me when I say this, but I am truly thankful for the journey we have taken with Ashley's transplant. We would not be the people we are today if we were not traveling this path. He has used it to shape our faith and to inspire us to live a life worthy of Ashley's gift. How can we be silent about the goodness of the Lord? As we watch Ash struggle, then become strong, then struggle, then become strong we see His hand on our daughter's life. He is molding each of us by writing her story on our hearts.

Tonight as I lay my head on the pillow and I listen to my little one sleep, I am so excited and a little frightened about the future. If we are allowed to leave this place and start our new life in our new apartment, it will be thrilling and it will be intimidating. Once again He is growing me and showing me the strength I can find in Him. Ash and I will become independent girls, figuring out how to get around in a strange new place and figuring how to live life after transplant. I know we will face many challenges, and the probability of us returning to the hospital is very, very real, but I also know that we will never be alone. He will be with us every minute of every day and somehow it makes it all seem "doable" to me.

I am going to go lay down for an hour before it is time to start the midnight medications. I want to tell each one of you who continue to be a part of Ashley's story on a daily basis, that you are loved and appreciated. I am glad you are still with us and I am thankful that you will be with us as the Father begins to write another chapter in her story. I hope this next chapter begins with the sentence, " We made it out." Good night and may the God of all creation (including transplants) make Himself known in your life too. Love Trish and Ash

Expectations

I would have never "expected for things to move so quickly for Ashley. After such a long wait (almost 9 full weeks of not eating) we are now approaching FULL FEEDS! Now for the really great news, tomorrow morning the plan is to turn OFF her TPN. I definitely did not "expect" this to happen. It will be the first time since Ash was 11 days old that she will not be receiving it. I am speechless!(I know Dave would have never "expected" that to happen!) There are so many things I want to write, but honestly can't find the words. As happy and excited as I am, we are still trying to balance it all with a dose of reality. Things can and do change, but for the moment I am ecstatic!


Ashley's x-rays showed no signs of aspiration into the lungs, and the feeding tube is still in its place. We have no answers for the vomiting, but we will just learn how to live with it. This is definitely not what we had "expected" to happen, but so far nothing has really been what we "expected" it to be. Sometimes that is really o.k. For 13 years I prayed for Ashley and I never one time thought or "expected" that God would bring us such a medically fragile child, but I am so thankful He did. I would have never dreamed or "expected" that I could love someone as much as I love my Ashley. I would have never "expected" that my tiny baby could do such big things. I would have never "expected" that she could be so wonderful. I would have never "expected" her to teach me life's lessons as opposed to me teaching them to her. I would have never "expected" for her to teach me about really and truly trusting God. I was supposed to teach her that. I would have never "expected" that I would be living alone with her away from Dave, Blake and Allie. I would have never "expected" that as we chose our apartment last week that we would actually be living in it this month! I would have never "expected" to be able to step out of my comfort zone and reach out to others who are hurting. I would have never "expected" to have such an amazing story of love, grace, compassion, sacrifice, selflessness, and brotherly love to tell. I would have never "expected" to make such wonderful friends and meet such wonderful people during this journey. I would have never "expected" that He would choose me to be her mommy. I would have never "expected" any of these things and so much more, but how grateful I am that He did. If we had walked this road according to my "expectations" we would have missed so very much. Thank you Father for "expecting" so much more than I did. I will never be the same.

Good Morning...

Good Morning from our new room here at the Nebraska Medical Center. I am so happy to be back! Oh, how I have missed you guys. Your messages, your support, your kind words, and of course your prayers are so valuable to me and I have been lost without them.

I have been allowed so much time to enjoy the peace and quiet of our new surroundings. This environment has given me opportunity to just sit and dwell in the presence of the Lord. My prayers seem more like an ongoing conversation at this time in my life. There are no fancy words, just a communication where I am talking to Him like He was actually sitting next to me. I can tell you that if someone had said to me last Friday that we would be out of ICU on Monday I would have told them they were lying. One of the things I love about Him calling the shots is that He is always working in my life even when I can't see it happening. As I think back over the events that took place from last Friday through Monday I couldn't understand why all of these things were happening, but now as I look at them on the other side, I only see His hand at work. He was orchestrating the events to line up so that we would be moved to our new room. The joy and peace that comes to Ash and I as we spend precious moments together rocking and playing in this room is so wonderful. Along with the joy and excitement we are feeling, comes new feelings of fear. I am still a little afraid to smile too big, to unpack our things, to become too comfortable here. Things change so quickly and Ashley's health is so very fragile that sometimes our good days turn bad very quickly. I am confused as to what my reaction should be at this point. I am trying to find a good balance of gratitude and reality at the same time.

When I look at the reality of the situation, Ash is still struggling. The vomiting is getting worse and not better. It is so very frightening that I am afraid to sleep. She is so nauseated that any movement or change in position can bring on a violent episode. My prayers continually ask that this might be His perfect will for us to be up here in this room. How I would hate for it to be anything else. I am praying that I will be able to handle the episodes with wisdom and experience and that I will learn to adjust to what is now becoming the "new normal" in our lives. I hope that He has equipped me to do this the right way. I am nervous for her.

This morning although Ash is feeling a little yucky from all of her meds, she is absolutely beautiful. I have spent an hour or two just watching her sleep in her crib. All of her tiny features that He designed her with make me smile. Her little eyes with their long eyelashes, her puffy, rosy cheeks, her tiny mouth, her little nose, they are all so unique and beautiful. She has a little squeak to her breathing as she sleeps this morning and it sounds like she is trying to tell me what she is dreaming about. Oh, how I love this little person! I have been blessed beyond my wildest dreams and I am more than thankful.

We will be having a set of x-rays this morning to check for placement of her tubes, and to take a look at her lungs just to make sure she has not been aspirating any of the vomit into them. Please join me in prayer about this. I know that God has a plan in mind for Ash, and I am praying this move was a part of it. I would love to continue to progress until we progressed all the way out of this hospital. That would be an answered prayer. I will go for now so I can go pick up the angel and the baby Jesus that Ash has thrown out of her crib. Thanks for loving us and for missing us while we have been gone. We are glad to be back. God Bless you today. Trish

Hurry Up and Wait

Let me start by apologizing for the lack of updates and postings lately. Trish is still without Internet access and I am still trying to get the right people to contact her today. She spent most of the day out of her room taking Ash to appointments so when I did finally get the right computer guy on the phone he was not able to get in touch with her. Hopefully tomorrow will be a slower day for Trish and Ash and we can get her computer connected.

The girls left the room this morning and hoped from one appointment to the next all day. We have learned how hospitals work over the last 15 months and can sum it up in one phrase. "Hurry up and wait." We are always hurrying up to get Ash and all her paraphernalia to appointments so we can wait because everyone is behind. The the wait puts us behind for the next appointment so we have to wait more when we get there.

Ash had a blood transfusion this morning and it is a 4 hour infusion so the total appointment time is usually around 5 hours. This started late and you can't rush the infusion so it made them late for the endoscope of the bowel. They did eventually make it there and the scope was another good one. We are so thankful that we have never had a negative report on a scope of biopsy of Ashley's new intestine. This truly is an answered prayer. God provided just the right organs for her little body.

The vomiting episodes are getting worse not better. It is amazing how she can have so much trouble vomiting when the food is going directly into her intestine. It is not even being fed into the stomach. So Trish was once again pumping the washer and dryer full of quarter tonight. I really need to send Ashley's stroller to them tomorrow. I know it will make getting around the hospital a lot easier.

Please pray that Trish and Ash will begin to get in a routine and that their time spent alone together will get easier with time. Please pray for continued progress and the possibility the Trish and Ash could be out of the hospital completely in time for Christmas. Thank you for taking the time to check on our Gherkin and please stick with us as we are trying to get the computer situation taken care of. I know you guys are missing Trish's postings. She really does do a much better job of keeping you informed than I do.

Have a Terrific Night and enjoy your families.

DAVE

Their first night

The girls survived their first night in their new home. It was such a blessing for them to be alone and in the same room tucked into their beds last night. Their is a rocking chair and Trish was able to hold Ash and rock her to sleep. This was an activity we took for granted with our first two children that was just an amazing opportunity for them to share last night. Ash had a couple of vomiting episodes through the night and 3 more this morning. We are learning that this will just be our new normal. Ash had never thrown up even one time prior to the transplant. In our old ICU in Dallas she was one of the only babies that did not have vomiting problems. We hate to see her struggle with this now however we believe it to be caused by the medication she is taking. Unfortunately in order to avoid rejection of her new parts the drugs are a necessary evil. So in order to give her body the best chance at keeping the organs she will have to suffer the vomiting. Over the course of the next year they will be adjusting the meds and finding the right combination so over time we hope to see an improvement in this department. God is in control.

If you have ever been around Ashley you will know that she never has a shortage of pink blankets. She is well stocked and well taken care of in the pink blanket department. Last night she managed to soil all but 3 of them. It is a good thing we got a room next to the laundry room because Trish will be spending a lot of time in there. Trish will be pumping the washer and dryer full of quarters like they were slot machines and she was in Vegas. Except here she wins every time. In go dirty blankets and out pop clean ones.

Trish and Ash will be going on their first outing today. They are going to head downstairs for a scope of her new bowel. I can just picture it now. Ash will be wearing her little mask with Mickey Mouse prints on it. I have no idea how Trish is going to convince her to keep it on her little face. I do hope she takes some pictures. Trish is better at me in typing posts, but I am much better at posting pictures and video. I will try to talk her through the process over the phone and work hard from my end to get those pictures up for you guys.

DAVE

So many Blessings today.

Today has been a good day for Trish and Ash. A day full of changes and one of the more fun days on this roller coaster ride. Trish and Ash have officially made it out of the ICU and into one of the cooperative care rooms. Trish is so excited and thankful to be out of the ICU. Not that we didn't like it there, it is just hard to spend so much time in a hospital room with all the interuptions and all the extra wires and monitors attached to our Gherkin. I am certain one of the really great parts of the new room will be sleeping horizontal in a regular bed knowing that Ashley is in the same room. We loved our little blue chair, but we are not to saddened to leave it behind. Tonight will be the first night in 2 months that Trish and I will both be sleeping flat in a bed. Our next big goal will be to both sleep in the same one with the Gherkin beside us. Not only does Trish get a new bed, but Ash does too. She will be back in a crib for the first time in quite a while. Back to jail she goes. Doing time behind bars!

In this new setting Trish will be responsible for alot more of the daily care of Ash. She will be giving all the meds, doing blood draws, taking blood pressure, taking temperature, emptying ostomy bags, changing central line dressing and recording all the fluid inputs and outputs. She will maintain a daily chart much the same as the nurses did then that chart will be turned in daily and the doctors will interpret the data and make their changes and plans for the next day. I know she will do great at it.

Today's changes for Ash brought another increase in feeds. The vomiting issues have not really been solved, but they are going to continue to increase the feeds anyways. We are just going to manage the vomiting issues as they come. A Gherkins gotta eat if she plans on being a Mighty Dill.

There has been a little wrinkle thrown into our internet connectivity plans during this move but we hope to have it resolved soon. I will be putting out an A.P.B. for Rick as he may be able to help. We are also trying to locate Tori. So Rick and Tori if you read this please give Trish a call at the Nebraska House room 5714 or send me and email at ashleysorgans@yahoo.com and I will send you a number where you can reach her. We are trying to find you guys but no longer have your phone numbers. It would seem that Trish's cell phone got a little bored and was looking for a thrill ride. It found two rides. The first one was a kind of bubbling roaring rapids and then it quickly jumped into a superheated tumbling ride. It had a lot of fun but felt out of place when it realized it was the only Blue Cell Phone riding with a bunch of Pink Gherkin Jammies. Guess who will be shopping for a new phone tomorrow.

Please be with us in prayer that God will protect Trish and Ash through this big step forward. Please pray that they will get to stay in this room together and will not find there way back to the ICU anythime soon. Thank you all for keeping tabs on Ash and praying for my girls.

Thank you God for the progess you have shown us today.

DAVE

New Room # is 5714

Please note the address change at the top of the page.

The new room # is 5714

WooooooHooooooo

The move to cooperative care is on. I don't have any details yet, I will post when I do.

Until we meet again...

"Until we meet again," is what he said as left this morning and quietly snuck out the door. I was laying in the bed refusing to acknowledge that it was morning and Dave was actually leaving. He had hugged me tight and given me that little kiss on my forehead that is so famous in our house. I laid there and actually began to feel knots in my stomach. After the door closed and I knew that he was on his way my stomach continued to feel sick at the thought of being here alone for so long. Dave and the kids will not be back until December 22. That is so far away! 25 longs days until we will all be together for the first time since September. As I walked into our tiny Ashley's room this morning she was all smiles and waves not even realizing that her Daddy had gone back home. It took a little while for her to stop watching the door, but I think she has figured out that its just the two of us girls again.

It was so wonderful to listen to Blake and Allie talk on the phone last night. The excitement in their voices as they rambled on and on about all that took place on their trip last week was so precious. I could listen to them talk forever! Allie was so grown up as she told me all about her wardrobe plans for this week at school. One of her friends had called just as she walked in the door and they figured everything out. They even had a back up plan just in case it was cold. I giigled to myself as I listened to her talk about what color of this and that they had matched up so they could look alike in class this week. Blake is just overjoyed at the thought of hanging out with his best friend Andrew. A week away from class means a week away from his baseball buddy and all of their "baseball" talk. I am sure the house was a buzz with activity this morning. I am so thankful for CHS. It has filled a very important part of their lives this year while Ash and I have been away. God has blessed us with this amazing group of students and teachers who have come to know and love my children.

Ashley looks fabulous this morning and I am thrilled to see her smile and listen to her babble "mama" all day long. We have continued advancing her feeds even though she is struggling with her little vomitting episodes. She only had two of them yesterday. That is progress. Sometimes God has bigger things in store for us than we can actually see. If only it works out for Ash and I to move over to cooperative care. What a tremendous blessing that will be. He is always working behind the scenes taking care of us. I am trying not to get to excited about it because I know how things can change literally from hour to hour around here. Ash had a spike in her white count yesterday and we are praying that it will be nothing. If it is God's will and if she is ready to leave this floor then I pray that this will happen for us, but only if He thinks she is ready. As quickly as we have seen Ash go downhill she could just as quickly turn around and be TPN free. I know that He has a plan. The hard part is just waiting to find out what it is.

Thank you from the bottom of my heart for continuing to check on us. Ashley is sustained daily because of your prayers. My heart is so blessed by the kindness you show towards our family. I wish there was some way we could return to each of you ten fold what you have given to us. Just know that I am thanking the Father for you and your support. Take care today.

Possibilities

Tonight as I prepare to head home tomorrow I am encouraged by the possibilities. I am so thankful for the time I got to spend with my girls. I am glad that Trish is here with Ash. There is no one I would want to be here more than Trish. She is an amazing mother who is so strong for our three children. I learn so much each time I come and watch her care for Ash.

We got some potentially good news today. Remember how certain people around here want to be joy squashers. Well there are others who want our Gherkin to have a wonderful Christmas. There is a possibility that Trish and Ash may get to move out of the PICU and into the Nebraska House. It is kind of like and apartment and is sort of half way point to get you out of the hospital. It is attached to the hospital and you still have access to medical care. One big difference is that you are allowed to have Christmas Trees with pretty lights that make little Gherkins say "OOooooooo!" They will set Ash up with all of her feeding pumps and supplies in the room and Trish will provide all the care. The doctors will come to the room for daily rounds and manage Ashley's care in that environment. It is not really out of the hospital but it is much closer than we have been in 2 months. Tonight I pray that Ash will remain stable enough and show enough progress that this possibility will soon become a reality. Thank you Lord for showing us these possibilities today.

Fingerprints...

One day several years ago when my Allison was only 3 or 4 we were driving to Oklahoma to spend Christmas at my sister's house. It happened to be dark and very cold that night and when I looked in my rear view mirror I saw my little Allie with her face and hands pressed up against the window. She had her little tongue stuck out against the glass. I watched her for a minute or two wondering what in the world she could be thinking before I asked her to sit all the way back in her car seat. The next morning as I went out to the car to bring in some gifts, I looked at the window and saw her tiny prints. Next to this blurry, yucky spot that I think is where her tongue had landed was the most beautiful set of finger prints. You could see all five fingers from each hand that she had left behind. I giggled to myself not thinking too much about it at the time, but every once in a while my mind drifts back to that memory of my Allie's tiny hands left on my window for no one but me to enjoy and I thank Him for creating her. Each time my heart has smiled at the thought.

I think that fingerprints are such an amazing piece of us that God designed. One thing about my little Ashley is that once you meet her, whether it be in person, through this website, or just being told of her story you will forever be marked by her tiny fingerprints. She has a way of leaving them behind, especially all over your heart. I love that her "marks" have such an impact on so many. She has definitely been designed with a unique set. I believe with everything inside of my heart that the Father carefullly designed each print that she would leave on this world.

Ever since the day I found Allie's perfect set of prints left on my window, I have tried to remind myself to enjoy each little mark my children leave behind. Especially during this period of our lives with Ashley and all of her marks she is busy making. I have learned to appreciate the way He has created us each one in His own image. I don't know for sure if the Father has actual, visual fingerprints on His hands, but I do know that when I look at my daughter I can see his prints all over her. One of my favorite things about Ash's journey is that He has left His fingerprints on it. When I look at my Ashley, I see His maginficent "mark".

My prayer today is that when people see me and my family that they will not just see David, Trish , Blake, Allison, and Ashley, but that they will see the fingerprints of God left on us.

Homemade chandelier

Ashley playing with the Chandelier I built her.

Giving way to Praise

Let me say that yesterday was such a journey for me and my whole spirit. After feeling such joy and then such disappointment, I finally gave in to the tears and took myself to the room to go to bed. It just seemed like everything came crashing down around our little Christmas Cave all at once. In just a few short hours we had seen Ashley do the best she had since transplant and then as quickly as it came it was gone. It was all too much. As I laid my tear stained cheeks on my pillow last night I allowed myself to just be still. I tried not to think of all the sadness in my heart. I started talking to God about the journey we were traveling together. I acknowledged that there had never been one step of it that I had traveled alone. Even in the darkest, scariest moments of it I could sense His presence there with me and Ashley. I thanked Him over and over again for allowing me to be on this journey. Although my heart was broken, I knew that I would not want to be anywhere else in my life. If I am not on this path, then that means I do not have my Ashley. When I became still enough to realize once again that this too would be alright the sadness in my heart just melted and gave way to praise. I was praising Him for creating my Ashley. I was praising Him for giving her life. I was praising Him for the gift of transplant. I was praising Him for this hospital and the surgeons in it. I was praising Him for the nurses He has allowed to care for my baby and also allowed to become my friends. I was praising Him for the families of the patients I have come to know and love. I was praising Him for allowing me to be me. I was praising Him for the heart (although it is way too sensitive at times) that He gave to me. I was praising Him for my husband who carries the brunt of our situation without a complaint. I was praising Him for the amazing son and daughter I left back home that He has given to me. I was praising Him for all that He has created. I was praising Him for loving me even when I give up hope. I was praising Him for not "needing" to know me, but for wanting too. I was praising Him and then I just fell asleep.

Today Ashley's feeds have been started again, and she is still vomitting. No one seems to know why she can not tolerate them. Something that should be so simple is just so difficult for her. In order to come out of the hospital she must tolerate 50ccs of formula per hour and her fluid balance has to stabilize. Then they will pull her central line and we will pack our bags and move into an apartment. Today it seems so very far away, but I have decided to continue giving praise for this journey. There is no other place I would like to journey to, because this is the place He has brought us. This is the journey that allows us to be her mommy and daddy. This is the journey that makes us a family of 5. This is the journey that Ashley is on and I am praising Him for allowing me to travel it with her.

Broken Hearts and Hopes

Tonight as I sit to write, the tears fall freely from my eyes and I can't seem to talk. As quickly as our hearts begin to hope they become broken. If I could go back to this morning and erase the mornings blog maybe I would. This road is ugly, and it is long, and it is lonely. Our Ashley is now vomitting her feeds just like before. The progress we have made is being taken back. They have stopped Ashley's feeds and have now increased her TPN back up to 25. I have no words that bring me understanding, and the answers I once searched so desperately for seem to not matter. It just feels like we will never make it home.

If I could I would pack my baby and all of her things and run back to the safety of our home where all that we know can be found. There are days when I feel confident and strong and then there are days when my heart gets broken over and over again. Honestly, I have no right to feel as sad as I do. With all that He has done for my family I feel so much guilt for the tears that seem to flow without end. I know with all that I am that He is good and that He loves me, but that knowledge doesn't seem to stop my heart from breaking with the disappointment I feel tonight. I just so desperately want for Ash to get well enough to go home, and it doesn't look like that will be any time soon.

I had hoped for Ash to continue increasing her feeds through the next couple of weeks. I had hoped for the doctors to come in and tell us we could go. I had hoped to spend Christmas with Blake and Allie outside the walls of this hospital. I had hoped to just have time, precious time with my husband and my children as we celebrate the Saviors birth. Tonight I just don't hope. I just cry. I find myself crying for the loss of the hope I felt this morning. I find myself crying for the pain she endures. I find myself crying for not being able to turn on her Christmas lights! I find myself being so ridiculous. Maybe I just need to cry while Dave is here so I can let it all out. I just need to let him tell me that it will all be o.k. and that we will come home someday.

Please forgive me for my broken heart and for continuing on and on. My faith does not waiver in knowing that there is a plan laid out for my family, but my heart does break with the lack of understanding. Thank you for listening and thank you for coming back to her story. Your presence in our lives is appreciated.

The Joy Squashers

It would seem that some around here are not as happy about the Christmas Cave as we are. We were informed tonight that we are no longer allowed to have our lights turned on for Ashley's Christmas Tree. They cited some hospital rule about not having lights displayed in patient treatment areas. There are lots of "rules" around here and they seem to follow the ones they want when they want. It is very sad to me to see that someone wanted to take away the small bit of home that Trish established in this place. Last year when we were in the hospital in Dallas,we set up the tree with it's lights and the staff was happy to bend the rules to make sure that Ash could celebrate Christmas with her roommate Kaleb. The rule could be overlooked if they chose to. We have had the lights on for 3 weeks and there was not a problem until tonight. It really upsets me that because someone wants to be a joy squasher they hurt my wife and made her cry by taking away my girls tie to home. I should go pray about my bad attitude.

DAVE

Uh Oh....

Ashley had absolutely no idea what to do with the bottle. She thought it was a great toy to shake around but had no interest in it getting into her mouth. Next I tried putting it into a sippy cup. Again is was fun to shake around and watch the milk splash all around, but no interest in actually ingesting it. OK, I have one more idea. How about putting the milk in a spoon and then feeding her by spoon. BINGO!! We were able to feed her 12 spoons. If I had to guess I would have to say that there was about 1cc per spoon. They were not anywhere near full spoonfuls, but hey we have to start somewhere and she is just a little pickle. After the "feeding frenzy" we laid her down for a nap and Trish and I went to get some lunch and turn in our application for our new apartment.

We returned just as Ash was beginning to wake up. I climbed up in the bed with her and we started playing with her toys. After about 30 minutes of play there was a weird sound coming from deep inside the Gherkin. Uh Oh... She worked up a bit of a mess. Within the next 30 minutes we had another 2 episodes. I just don't know why every time we start to feed her we have these problems. I just pray that today's episodes will not lead to a decrease in feeds and an increase in TPN tomorrow. Please be with us in prayer that toady's trouble will not continue tomorrow. We are really hopeful that Ash will continue to progress and really really pray that she could be released from the hospital before Christmas. We would love to have all 3 of our kids in our little apartment for Christmas. Last year we spent Christmas in the hospital in Dallas and I would love to not repeat that with Christmas in the hospital in Omaha.

Thank you for praying for our Gherkin today. We love and appreciate each and every one of you who care so much for our little pickle.

DAVE

Bottles and Blessings...

This morning we have received the good news that Ashley's feedings are going so well that she will be given a "bottle of Blessing"! Can you believe it? Dave and I are so excited that Ashley has tolerated her feedings. The surgeon asked if she had been given anything by mouth yet and when we told her "No, but we think she is ready." She said she thought we should try it. Ashley's daddy requested a pink bottle for his princess and they actually gave us one. They will be increasing her feeds to 25ccs per hour and going DOWN on her TPN to 15! She has never been on this low of an amount. We are doing the happy dance in our Christmas Cave this morning. I really don't expect her to actually want to drink it in the beginning, but it is a skill I am sure she can learn again. How blessed we feel this morning! Ash looks better this morning than she has since we arrived. Her color is beautiful, her smile is charming, her laugh is contagious, and her eyes are twinkling. She is oohing and awing at all of her toys, and she is playing peek-a-boo and patty cake with her daddy. My heart is so blessed by the spirit that I see in her. She looks good and I think she actually feels good too.

Yesterday, Dave and I were blessed with a wonderful Thanksgiving meal provided by our new friends here in Omaha. How blessed we felt by their kindness. The food was delicious and so appreciated. Thank you for thinking of us and for wanting to share part of your holiday with us. Our hearts were truly touched, and we are Thankful for you.

The blessings we find surrounding us this morning are so big they could not be "bottled" up. We had to share them with you all because we know it is the prayers of those who love our Ashley that are making a difference in her life. We are so blessed to be parenting this little one and to be watching the Father move in her life each and every day.

I am going to go now and try to get our Ashley to remember how to eat from her bottle full of blessings. Thanks so much for checking in on her today.

"O give thanks unto the Lord"...

For He is GOOD!" How this verse has taken on new meaning in my life. This year as I sit next to my best friend, and we watch our tiny baby girl sleeping in this bed I am more than thankful. Thankfullness, gratitude, appreciation... There are no words to describe the feelings that can be found inside of my heart.

Many people look at this year of our lives and think how awful, how sad, but if you were to ask David and I to try and describe this past year the word that comes to our lips is WONDERFUL. Things may not have been easy, and things may not have gone according to what we had planned for this year of our Ashley's life, but without living each one of these days we would not be where we are today and we would not be the people we are today. I would not trade this life, our life, for any one else's.

The lessons I have been taught have come as the result of immense heartache and pain. From a lack of understanding and searching for answers, but the lessons I have learned are valuable and I will treasure them for a lifetime. I am thankful to be who I am, to be where I am, to be the mom I am, to be the wife I am, to live the life I am living, to be surrounded by the people I am, to be saved by grace like I am, to be chosen like I am, to be blessed like I am.

As I search my heart to come up with my Thankful list, some of the things I find myself adding would seem so silly to anyone else, but to me they represent this life He has blessed me with. Tonight I am thankful for baseball and chocolate chip cookies, for finger nail polish and polly pockets, for pink blankets and very, big hair bows, for tacos and "chickens with whiskers". All of these things represent the best parts of my life. Baseball and chocolate chip cookies have given me a precious bond with my oldest child Blake who I adore. Finger nail polish and polly pockets have given me priceless hours spent on the floor with the most beautiful 8 year old girl I have ever laid eyes on, my Allison Brooke. Pink blankets and big hair bows are what you will find my fragile baby girl, my amazing gift from God, lying beneath on any given day, our Ashley Kate. Memories of Tacos and silly songs are what bring a smile to my face as I live a life 700 miles away from my very best friend.
As I search my heart tonight how I laugh and giggle at the silliness of what has made it onto my "thankful list " this holdiay season, but I realize that He is growing me and although my list is not that mature it comes out of a heart of true thanksgiving.

Baking a Turkey?

This morning as I entered the Christmas Cave I honestly thought that somehow, someway David had snuck an oven into our room and was baking a turkey. The heat was so intense! I looked at him all snuggled in the bed next to Ashley and realized he wasn't trying to bake a turkey, he was baking a Gherkin! The first thing I did was strip off all of those blankets and turn the thermostat back down from 75 degrees to my comfortable 65. This guy is crazy! We can't live in a Christmas cave if its not cold enough to hang turkeys in.

Now that I have cooled things down in the cave, I will tell you how wonderful it is and how thankful I am to walk in and see Ash playing with her daddy each morning. She loves that guy so much. She had a long string of beads ( sent by our little Mission Friends class ) and she was beating him up with them. He was trying to hide under the blanket from her, but she is too smart for that. How blessed we are to have him here to celebrate Thanksgiving with us.

Today we have so many things that we are truly thankful for. As I sit and think of all that He has done for us this past year my heart overflows with gratitude. The thing that comes to mind for us the most is the gift of life that Ashley was given. We have set aside today to remember the family of our little donor. Dave and I have no idea who they are, but we will spend the day composing a letter to them. I pray that together we might find the appropriate words to share with them. Our hearts are so full of appreciation for the gift they gave to our daughter. If only I could take a picture of what is inside of my heart so they could truly see what a difference they have made in our family. I am searching for the words, the perfect words that would only bless them and not cause them pain. Please pray that God would guide us as we attempt to share our feelings with them.

We are of course missing our Blake and Allison, but as I listen to the joy in their words over the phone I am so thankful they are spending the holiday with our family. How wonderful it is to hear the happiness in their voices. They truly needed this time away from all the burdens they feel. I know how difficult it is for the two of them as they look at an empty nursery every day and as they see all of Ashley's toys sitting alone and unplayed with. God has truly blessed us with the most incredible people to be our family. There is no shortage of laughter, and love, and hugs in my sister's home for my children today, and I take great comfort in knowing that they are there.

As I attempt to count up the blessings in my life that I am thankful for this morning please know that each one of you are on my list. God has blessed us by your love, your support, your encouragement, and your prayers not only for our Ashley, but also for my entire family. You are loved and appreciated beyond measure. I am truly Thankful for each of you. Take care and enjoy time with your families, and HAPPY TURKEY DAY from the 3 of us here in Omaha. God Bless.

Ashley's Prizes

I spent the morning playing with Ash. Biting her fingers and letting her bite mine. I did find out that her liver has a direct attachment to her jaw. The last time I put my finger in her mouth was before her transplant and her little baby Gherkin teeth would try there best to bite me. She now has a new liver and it seems to have strengthened her jaw muscles. I learned where not to put my finger in the future.

This afternoon Trish and I left the hospital for a while to go look at an apartment. Our plan was to sneak out and while Ash was sleeping take a quick look and be back before she woke up. Of course by now you would think that I would know our Ash won't cooperate with any of our plans. We never got Ash to sleep and we had an appointment so we had to leave while she was awake. She was so close to sleep we thought she would fall out while we were gone. We came back 1 1/2 hours later and Ash had still not fallen asleep. She finally fell out around 5:30pm and has not woken up since. I am afraid that I may be up all not playing with her. Oh well, I would much rather play with a Gherkin than have to go shopping the day after Thanksgiving. I think we found an apartment that will work for us. We are supposed to go back on Friday and try to finalize the plans.

Trish received a most wonderful box in the mail today. It was sent by one of the children's Mission Friends classes at our church. She opened it up and the first thing we found where cards the children made for Ash. We love these cards from little children to Ash. Trish's heart was happy as she read their messages to Ash. Next out of the box was some lotion for Trish. Oooooooo Girly!! Trish found some long Pajamas which she loved. She was telling me she wanted to go out and get some while I was here. Now she doesn't have to. She found a mug and some hot chocolate. Yep, you guys got it right. They promise us it is going to get really cold soon. Then Trish pulled out a care bare and Ash started reaching and grunting. She knew it was for her. Next out was some books including Blue's Clues. Ash was smiling and reaching and grunting. She was loving every minute of it. For someone who cannot talk she sure knows how to communicate. Thank you so much for sending this box to my girls.

I pray you all have a wonderful Thanksgiving tomorrow. I know we will as our family has so much to be thankful for this year. Enjoy your families.

Goodnight,

DAVE

Sad news

Dave and I have just found out that young Jordan will not recover. The family has decided to donate her organs in a most difficult time. My heart has been so heavy for her today, and now my heart just breaks at the loss her family is experiencing. How touched I am knowing that she and her precious family will save so many lives with their gift of organ donation. Dave and I feel thankful for their decision to donate Jordan's organs. We know that without our donor family's gift our sweet Ashley would not be with us today. I pray they will someday know how much they have touched us with their decision. Tonight all that I could write about our day here in Omaha seems so insignificant compared to what has taken place in the life of this family. As precious as my daughters are to me, I know that Jordan was just as precious to her family. Again, I can't pretend to understand the whys or hows things must happen, but I do know that He is good and that He loves Jordan and her family more than words could describe. My thoughts and prayers are with them, and I pray that someday they will hold and see their sweet daughter again. Until then she will be resting safely in the arms of the One who created her. Please remember to pray for them.

Renewed and Refreshed

This morning I feel so renewed and refreshed by a good nights sleep. It is amazing how good it feels to lay down in a bed after sleeping in a chair for 2 months. Although I am feeling well rested and chipper, poor Dave is very tired. He did not fall asleep until after 4:00a.m. and Ashley Kate had him up playing by 7:00a.m. He acts like it bothered him, but he is just trying to play tough. He is so in love with this baby girl that he would sit up night after night playing with her. My heart is always so blessed as I sit back and just watch him with her. They rocked and sang and played for hours on end. She is so happy to see him now that she figured out it was her dad who snuck into the "cave" late last night. It took her a minute because she had just gotten up from a 4 hour nap. This morning I found him laying next to her in her bed playing peek-a -boo under her blankets. She is so funny as she "grunts" and squeels with excitement as he found her hiding. To see the two of them playing just does so much for me. I love his visits as much as she does.

We think Ashley looks fantastic this morning! They are increasing her feeds to 15cc per hour and are you ready for the really good news? They will be decreasing her TPN from 30cc to25! Yeah! for Ash. If she continues to do well without any vomitting and without contracting a virus( which is every where up here) then I can see us leaving the PICU in the near future. I am feeling so blessed and encouraged by the progress in her feeds. I know it isn't much, but when you haven't eaten in two months 15ccs an hour is like having a big Thanksgiving dinner. How appropriate that He has blessed us by allowing our little one to eat right at the Thanksgiving holiday.

I would like to ask everyone to pray for a young girl named Jordan from back home in Longview. I don't have a lot of details, I only know that they found a bleed in her brain yesterday and her vitals are not stable. My heart is so very heavy for her and her family this morning as they are faced with a very difficult set of circumstances. When your children hurt your heart hurts beyond description. My prayers are with this family as they spend their holiday in an unfamiliar hospital. Father, please touch her with Your hand and please hold her close to you today. I pray that you might allow her family to feel Your presence with them as never before. Please give them strength from You.

Thank you for praying for this young girl who I have never met. I know that you are so very faithful with your prayers and I appreciate your faithfullnes to the Father. Take care . Trish

I made it and all of the nurses around here where asking about my flight. I am so sorry to report to you that my flight was uneventful. No harassment by the TSA for me today.

I came into the room tonight and was surprised that Ashley did not recognize me. It was a bit discouraging, but I was quickly encouraged as it did not take her to long to remember me. I picked her up and she began to rip my face off. I really do miss that game. She was really fun to play with and we had a great time together. She gave me 5 and everything. I love to see how smart she is and how much she has learned. She is looking strong to me. It is great to see how God has taken care of Ashley.

Thank you Troy and Melanie for the Christmas Gherkin you sent. We love it. It was a wonderful find that will always be a reminder of how small our Gherkin was on her first as well as her second Christmas.

Goodnight, or morning or whatever time it is.

Excitement in the Air

The air in the Christmas Cave is filled with excitement tonight as we count down the hours until Dave arrives. Only 2 more and he should walk through the door. I am so happy. I can feel the smile on my face tonight. Ashley has been sleeping all evening so I hope her daddy is ready to stay up and play all night long. She is resting up. I usually try not to think about how much I miss seeing Dave everyday, but when I know he is coming the waiting seems to take forever. Have you ever had a really good friend? I mean the kind of friend who allows you to be whoever you really are. The kind of friend who just wants to hang out even if you have absolutely nothing to do? The kind of friend who can make you laugh at the dumbest things? Of all the people in the world who could have become my very best friend I am so thankful that God made David mine. He just makes me happy. I am so looking forward to watching him spend time with Ashley this week. We have nothing to do but absorb every moment with our daughter. I just can't wait for him to get here so we can start. I just know we are going to be making memories that will carry me through until he brings the kids to visit us at Christmas.

Ash looks so good tonight. She is now taking 10ccs of formula per hour and she seems to be tolerating it well. She is as awnry as ever and giving everyone fits. She was happy to help cause trouble during her scope today and they all love to see her feeling good enough to help. As soon as Ashley received the meds to help her relax for the procedure she began to be so funny. Everyone became her friend almost immediately. She was waving to them all and reaching up to pat the nurse on the face. She began saying mama over and over again and was trying to share her toys with the doctor who was busy with the scope. When I came around the corner I could not help but laugh because with a little bit of drugs on board Ashley loves everybody. She went from crying and telling them all bye bye as they came in the room to sharing all she had and giving kisses out like they were never ending. Needless to say she kept us all laughing. How thankful I am to be here with this group of people to take care of my daughter. They are really good at what they do.

I am going to go rest in my chair until he comes walking through the door. Ash is still sleeping so things are pretty quiet in the "cave". Maybe I will just sit and thank the Father for my sweet Ashley and all that He has done. I am blessed and I am thankful I can see it. Good night guys. Take care and rest well.

Beautiful Pictures...

It is so funny how my perspective has changed over the last few months. I have been an avid scrapbooker for over 8 years now, and photos of my children are my passion in life. There is nothing I love more than to look at pictures of Blake, Allison, and Ashley. My favorite photos of the children are those that show the changing of their ages. Pictures of their hands and feet are on the absolute top of my list. Today I became so excited as the doctor presented me with one of the most beautiful photographs I had ever seen. It was "text book" perfect according to Ashley's doctor. As I looked upon this beautiful photo something struck me as funny. To anyone else it would probably be grotesque and confusing, but to Ashley's mom this was ranking up there with one of the best pictures in my photo collection. I no longer look for the perfect shot of Ashley's face or her eyes. It's not pictures of her fingers or toes that put the biggest smile on my heart. These days my favorite pictures are of her "guts". Thats right. Her intestine. To be specific, her small intestine. There is just something about a nice pink photo of this long, circular tube that warms my heart. Not only do I find beauty in the fact that it looks healthy, but I find beauty in it because it too, just like my Ashley was a gift. A priceless gift. Something that measures far beyond riches or treasures.

I am so happy to announce that Ashley's scope was perfect. Things look so good and there are no signs of rejection. I am more than thankful for my "beautiful pictures".

Ashley's day...

Ashley's day has been a little slow so far, but things will begin to pick back up again around 3:00. Today they will scope Ash's new intestine to look for any unusual signs. So far all of her biopsy's have shown normal cells and we have been given the most "beautiful" pictures of it. I am praying for the same to happen today. After the scope they will actually turn her feeds back on and instead of one "thimble" full of formula at a time she will receive 2! Blessed beyond measure is how we are feeling about this new. She will be allowed 10ccs an hour. I am very excited they feel like we are ready for an increase. Ash has a very sore throat from the breathing tube that was in during her procedure yesterday. She is coughing and crying because it is so sore. She seems a little sad today because of this, but other than that she looks really good. She is now taking her 1st nap of the day and I am planning on joining her soon.

We are so happy that Dave will be here in less than 12 hours. I can't wait to see him. He is so happy that Ashley is not on the ventilator and that he will be able to hold her and play with her as much as she can stand. I am even looking forward to listening to him sing to her. One of my personal favorites of his is "Christmas is coming, the goose is getting fat!" then something about "putting a penny in the old man's hat?" I love to listen to him sing this song because it comes from a heart that is full of happiness and joy. When he pulls this one out I know he is happy!

I am so very thankful for all that He is doing in the life of my family. Today He has blessed me with a new friend who is walking a road that almost is parallel to mine. How wonderful it is to hear how He is just as involved in her daughter's every breath as He is in our Ashley's. He really is a big God and a loving Father.The experience of Ash's life has shown me just how incredible He is. He is busy taking care of all of us, but not to busy to take care of more. I am so thankful.

Thank you to all who have taken the time to check in on Ashley's story. I have been so blessed to be able to share our good times along with our bad with so many who love her. Your friendship is at the top of my "Thankful List" this year. My list is getting so long this year it may have to be consider a book! Take care today and enjoy the feeling of thankfullnes this week. Nothing quite compares to a thankful heart. God Bless. Trish

Are they INSANE??

I think they are all crazy. They stopped Ashley's feedings so they could do another "procedure" on the Gherkin later today. I think they are all NUTS!!

CRAZY CRAZY people I say.

Early Morning...

Good Morning from Ashley's Christmas Cave here in Omaha. We have been awake visiting with each other for half an hour now. She is full of spirit this morning. We have been talking a little about the Christmas Story while Ash plays with her nativity set. She emptys each person and animal out of the stable and holds them up for me to see. She listens to me explain to her just what role they play in the story of Christmas and nods her head so attentively as I talk. Then all of a sudden she has heard enough about that person and out of her little hand, off of the bed, and across the room they fly. O.K. I say then we move on to the next character. Night before last as we "talked" about the Christmas Story I looked over at her and she had the baby Jesus in her tiny little hands. How precious I thought to my self as I was preparing to tell Ash all about the love He had for her when all of a sudden across the room He flew. Now I am really alright with watching the angel take flight from her hand, the camel and donkey don't really bother me, the wise men in my opinion really belong on the other side of the room to signify that they have a long way to travel before arriving to see the child, but baby Jesus? This just doesn't sit well with me. After searching for what seemed like an hour I finally found Him under my "favorite" recliner. (If her brother Blake could only see Ashley's pitching arm I know he would be proud!) I was so afraid we had lost Him for good. I tried to explain to Ash that we could not have a nativity set without the baby Jesus in it and she nodded her head like she understood exactly what I meant. I am amazed at how she knows if the proper response to my questions is either a shake of the head yes or a shake of the head no. She is just so smart! So today I will try and teach my sweet girl that it is not nice to throw the baby Jesus across the room. How privelaged I feel to be the one chosen to teach her all about how much He loves her.

There are days when I look at Ashley's life and I think of how far we have to go, and then there are days when I look at her life I am so proud of how far we have come. This morning as I watched Ash receive her 3rd "thimble" full of formula (Praise God!), I was thinking what an impossible feat this will be. Will she ever eat tacos with her Dad? Then I immediately thought of King David when he was just a shepherd boy. Remember how he was the only one who went out to face the giant Goliath? He must have felt so small, and he must have thought this is impossible, but with the strength God gave him he was able to face this giant and come out victorious and able to give God the glory. How blessed I was when I thought of my tiny Ashley as a "giant fighter"! She does have what it takes. I know that she does! She will fight this giant(learning how to eat again), and she will one day be able to stand up and tell how He gave her the strength to do it. You know the Bible tells us about having the faith of a mustard seed, I wonder if the faith of a "thimble full" would do? I am so blessed to be her mom. She teaches me so very much, even in the early morning hours.

A Thimble Full.

Ashley's feedings are going well thus far. She gets 5cc per hour and it amazes me when I think of how little that is. She is getting less in 1 hour than I eat in 1 bite. It literally takes her 1 hour to eat the contents of a thimble. At the rate she is going now it would take her a year to eat the amount I had for dinner. She is going to have to pick it up a bit if she is going to eat tacos with her dad some day. Sometimes when I see her I tell her she is a big pickle, but today was a reminder that she will always be my little Gherkin.

Thank you for your prayers before during and after her surgery today. We know without a doubt that you guys are carrying our family right now and we are sincerely grateful for each one of your prayers.

Goodnight.

DAVE

Her Heart...

Last night I met a mom of another transplant patient who had come back into the PICU because of a virus. While visiting with her I learned that her daughter was actually 3 weeks younger than my Ashley. The thing that amazed me the most was how big and strong this little one looked. She weighs 25 lbs. and is walking and talking. She had a full head of hair and I would have never guessed that the girls were the same age. As I relayed this information to Dave late last night my heart almost hurt as I realized how tiny my Ashley is. She doesn't walk or talk. She doesn't even crawl or sit up by herself. I found myself wondering how will we ever get there? It seems like Ashley's battles have been spent fighting other issues. We haven't even begun to tackle these other things.

Today as I sat in the waiting room waiting for that call, I saw this mom again. We began to visit a little more and my heart was so blessed as I realized what God was doing at this moment in my life. As I listened to her talk, I gained strength and support with each passing moment. How wonderful it was to see and feel the same way another mom's heart sees and feels. I was sharing with her how my heart pounds and how my hands shake as I watch the minutes tick by on the clock while they have my Ashley in surgery. Then she made a statement that seemed to put everything I have experienced into perspective for me. She told me that she had mentally prepared herself to bury her daughter 6 times now. As painful as that sounds it is exactly what I have been living but just too frightened to admit. She told me that she had come to realize that as much as she wanted to hold her baby that if God wanted to hold her more that it would have to be O.K. What strength she has, and what strength I instantly admired in her!

Tonight while my sweet Ashley Kate was drifting off to sleep it all came to me. It is so not about Ashley's health. It is only about her heart. It does not matter if she is crawling, walking, or talking. The only thing that matters is what is found inside of her heart. She was created to worship Him and to praise Him. If she never walks it will be alright. Look at how her life brings glory to the Father. She is doing exactly what He made her to do! Every moment of her life is a reflection of who He is and what He is doing. He made all of these precious children in this hall different. All of their roads will be different as they struggle for life, but the one thing they all have in common is that they were made in His image. It can't get any better than that. When my eyes begin to drift away from her heart and onto her health that is when I begin to stumble on this road. If only I could remember to see His purpose for Ashley and her struggles. If only I could remember that He is using her to change my heart and my life. She is doing more than just walking and talking. She is living according to what He has planned for her. That is what matters. Her heart is so very precious and so much more important than her health.

As I lay my head down to sleep tonight my prayer is that my heart and its "health" would reflect who He is too. I want my actions and my words to reflect what it is He has done and is doing. I want to keep my mind focused on taking care of the hearts of my family and let the rest just fade into the background. At the end of this road it is what He will find in our hearts that will matter. Nothing else will count for anything. Father, thank you for showing yourself to me today as I waited for my daughter to come back to me. Thank you for your willingness to constantly work in my heart and in my life. Thank you for your forgiveness and thank you for my youngest daughter's life that you are using to change my heart.

Ther Gherkin is now getting 5cc/hour Wooohoooooo!!

She Looks GREAT!!!

I am so excited to report to everyone that I think Ashley looks GREAT! She has never looked so good or so comfortable after a procedure. She is a little puffy and swollen, but I think she looked that way before she ever went in. She is now sitting up in a hot pink boppy pillow watching Blues Clues and chewing on the camel from her nativity set. She is NOT on the ventilator and I am praising God for His goodness. She is breathing comfortably at this point and is not showing an elevation in her temp or her blood pressure. I think she looks phenominal! I could not be happier. The report I was given is that the tube is in place and that we are actually going to begin feeding her 5ccs per hour today. I am so happy. The feedings will be the true test. We will know very shortly if things are going to work for her or not, but I can't help but tell you that I think we may have finally figured it out. Thank you so much for praying.

Now I will make a little confession. My toothache is coming from a wisdom tooth that I am too chicken to have taken care of. I am a firm believer that He did not make a mistake when He gave me these wisdom teeth. I just don't know why they have to hurt so bad! They must have been placed in my mouth for a reason. Why are they even called wisdom teeth? I am hoping the pain will just go away and I can go back to ignoring them. I wonder if they can actually make me sick? At this point they are just causing my left jaw, left ear, left side of my head and left side of my neck to hurt. Oh yeah the left side of my throat too. If all of that would just stop then I would feel just fine. Hopefully He is planning on taking care of that for me. If not I will just have to suffer because I am not going to let somebody cut out my teeth. That just doesn't even sound "doable" to me. I am such a wimp!

I am going to go try and take a little nap now that my sweet Ashley is no longer under the anesthesia. Hopefully she will like that idea and we will both get some rest. Thank you so much for checking on us. I am feeling optimistic that all of this has been worth it today. I will give more details about how things go with the feedings this evening. Take care guys.

11:00 Surgery

I just got word that they will take Ash down for surgery sometime around 11:00. Please be in prayer with us that today will be a good day for Ash. She has not had food in 8 weeks so I really would like to see today's procedure have a positive outcome.

Dreams

Last night I had one of those dreams that was just so real. I thought Trish was laying next to me, but when I opened my eyes and looked all I saw the the empty side of the bed. It has been 2 months now that she has not been there and just beyond the empty side of the bed is an empty baby bed. In my dream is just seemed so real.

I used to dream of walks down the sandy shores of a beautiful Caribbean beach watching the Sun slowly dip into the ocean. I still want to go there, but now my dreams are different. I dream of a time when the beds are not empty. I dream of seeing my Gherkin take her first steps. I dream of all the trouble she will cause. I dream of watching Blake and Allie play with her and chase her around the house. I dream of hearing doors slam and kids yelling "Ash won't leave my things alone!" And who knows perhaps one day down the road my dreams will mesh and Ashley, Blake, Allie, Trish and I will be watching the sun dip into the ocean on some Caribbean island.

Nerves? or Toothe Ache?

Something is up tonight. I am hoping it is just me being nervous about tomorrow's procedure. I just don't feel good tonight, and I can not get sick! I have had tooth ache for a couple of days now and it seems to be getting worse. Now the entire left side of my head is hurting. I have a headache, and ear ache and a sore throat. What is going on? I seem to be a little bit jumpy tonight as well, and poor Dave is catching the brunt of it. I think this is all because of nerves. At least I hope it is. I just can not afford to get sick because it would be too dangerous for Ashley. I know that God knows this and He also knows how bad I am feeling. I am praying that tomorrow all of these "aches " will just be gone.

Ashley has been sleeping all evening long. I am afraid we have our days and nights all mixed up. I know that I should try to keep her awake during the daytime to try and fix this, but I am too tired to stay awake. So unfortunately we have been sleeping all day and playing all night. This has really messed us up. Maybe this is another reason I am just feeling a little under the weather.

I have no idea what time they plan on taking Ash down to specials tomorrow, but as soon as I find out I will post so you all will be aware of when she is in surgery. Remember this should be a simple procedure. So far nothing has turned out simple. I think this is why my nerves are on edge. As hard as I try to stay positive about tomorrow, I am afraid it is really bothering me. My mind is racing with lots and lots of things and I just want to lay down and rest. About the time I go to lay down Ash will be up and ready to go. Oh'well, Dave is on his way here to give me some reinforcement. I am looking forward to sleeping in the bed instead of the recliner. I am also looking forward to some really good adjustments coming my way to help me start to feel a little better. Only 2 more days until he arrives.

I am going to go switch my laundry and then try to sneek into my chair without waking our Gherkin. We really appreciate all of your prayers. If you would please add me and my tooth ache related yuckiness to your list I would so appreciate it. Thanks for checking in on us tonight. God bless.

In Memory

I am so humbled each time I look at my Ashley and I realize that she is not only representative of one tiny life but now two. As I was playing with Ash by her Christmas tree this morning and showing her all of her special ornaments I began telling her about each one and who had given them to her. She was listening to me so intently and watching them all sparkle in the lights. All of a sudden the most beautiful thought came to me. Each ornament on her tree tells the story of someone who loves her. How precious would it be to have an ornament that told of the little one who gave Ashley her second chance at life and representated the love that went into the gift that she received. I was so excited at the thought of hanging this honorary ornament in memory of our baby donor that I got right up and went to order it. I immediately knew which ornament it had to be. I went to the James Avery websight and found the silver angel ornament. I am having it engraved with the the words,"In memory of a tiny life, who gave so much" Sept. 26, 2006. I can't wait to show it to Ash this year and every year as she grows up and learns of the gift our donor family gave to her. My heart is glowing with excitement as I wait for it to arrive. I have also ordered 3 more tiny angel charms to hang on her tree to represent the little lives we have witnessed leaving this place while we have been here. I never want to forget those precious babies and those who loved them so much. I have learned so much in this place and I know that life is a gift. Nothing promised or earned, just a magnificent gift from the One who loves us. Our children are so very precious and valuable. Each day that they are with us is nothing short of amazing.

My Ashley is feeling so very good today and my heart has been so blessed as we have played together. She looks wonderful and I am so sad about sending her back to the OR tomorrow. I am hopeful that all will go well and that she will return without the breathing tube. She is resting this afternoon and I pray that along with this rest her tiny body is gaining strength for tomorrow.

The blood drive in honor of Ashley was this afternoon. Thank you to all who took part and gave so willingly the gift of life. Ashley and so many others are alive today because people have been willing to share their blood. Dave told me how big and scary the needles were. I laughed at him and Sammy as they raced to see whose blood would flow the fastest. They are now trying to re-coop from the whole "ordeal" by laying around and watching football. I hope they will have enough strength to get up and find themselves some dinner. Ashley is definitely tougher than her Daddy! She now laughs in face of any needle they approach her with. She is such a "pro"!

Thank you guys for loving Ash today. I would be so grateful for your prayers for her tomorrow as they make the 3rd attempt to place this silly feeding tube. This is her last chance of doing it the "easy" way. I am praying for success.

Ashley's Christmas Cave

If you have to live in a hospital room you might as well make it as personal and "homey" as possible. This is what I have tried to accomplish in Ashley's room. We have affectionately named it the "Christmas Cave". When you walk into her room you automatically notice a lovely aroma that comes from her Glade plug in. This alone has made her room a favorite here on the floor. The pleasant smell just greets you at the door and invites you to come on in and stay a while. The next thing you will notice is the sound of beautiful Christmas carols playing on her pink CD player at the head of her bed. This is personally my favorite part. The sound of Christmas music just puts me in a happy mood, and the fact that it comes from the cutest baby girl pink player is just the icing on the cake for me. If you begin to scan the room to the left you will see one of those standard hospital tables that are found in every room, but ours is so much more than just a table. This our little piece of home. On Ashley's tabel sits her Christmas tree. Again this is not just any tree, but it is a baby girls Christmas tree. The lights are purple and white and they twinkle just like the light in Ashley's eyes. She loves to stare at them for hours. On the branches of the tree are tied pink ribbons. Each ornament that we have chosen for Ashley is hung not by just any hanger but by pink ribbons instead. The ornaments themselves are all designed for a special little girl. Along with her ornaments hang pictures in tiny silver frames of Blake, Allison, and Ashley. We also have hung the words faith, hope, and noel all over the tree. They are also silver and are hung on pink satin ribbons. The rest of the tree is covered with silvery, white snowflakes that sparkle in the light and we have just added some long silver icicles to top it all off. They are spirals covered in silver glitter and hung on ribbons. Under her tree sits a silver frame that holds a picture of my three most precious gifts from the Father. Blake and his two sisters sit smiling at us from under there. I have many precious hours as I sit and "ponder" in my heart all that He has planned for our family. Oh! how we love Christmas time.

Living in this room is not all bad. I have seen many answered prayers take place in this room. My sweet Ashley has recovered from six trips to the OR on the bed in this room. At night this room is where I watch my little one rest safely in His arms. This room is also where I have laid my head on the pillow and drifted off to sleep as I pour out my heart to Him night after night. After 7 weeks of living in this room it has begun to feel like a home away from home for Ashley and I. Through out the day and night people who have become our friends poke their heads in to see how we are doing. Some of the nurses and the doctors have become like old friends to us, and I am more than grateful for the ones He has placed here to care for our Ashley. I have watched Ashley recover, play, sleep, clap, and say Mama in the walls of this room, and every moment of the time spent in here with her I count as precious.

As I think of where we are tonight in this hospital so far away from friends and family I am counting Ashley's Christmas Cave as a blessing in our lives. Of all the rooms in this hospital I am glad that Ash and I get to live in this one. Together for another day and another night. What a gift it is.

A Weird Thanksgiving

I am sitting here alone in my house and I realized something weird. I have a family of 5 and two of us are in Nebraska, two in Oklahoma and 1 in Texas. When Thanksgiving rolls around we will have 3 in Nebraska and 2 in Oklahoma. Even though we will be separated we have so much to be thankful for this year. Our Gherkin has progressed so far since last year in some ways, and in other ways it seems like there is no progress at all. Just the fact that she is still alive is a blessing we were not sure we would have. It is difficult spending so much time apart, but we are thankful for where we are. (Ash has had her transplant as opposed to being here at home and us watching her slowly die while she waits)

Tomorrow there will be a blood drive for Ashley at the First United Methodist Church from 12-5pm. We invite you all to come and be a part of this Blood drive in honor of Ashley. Go to church, eat a big meal then come out and give some blood for Ash. They will take the blood that is donated and send it to the hospital where Ashley is staying. I didn't know they would actually send it there, I thought that was cool. So please come out and be a part of Ashley's Story. Check on the homepage and you can find more information about this event.

Thank you all for checking in on Ash. Have a great night and enjoy each other.

DAVE

She finally Said "It"...

She did it! I actually heard it! Last night as my sweet Ashley was refusing to sleep I had leaned back in my recliner and I heard this very tiny, scratchy voice say, "Ma ma". I thought I had dreamed it so I sat up and looked at her then she said it again, and again, and again. I asked her, "Ashley, do you love mama?" and she nodded her head "yes". We played this question and answer game for a long time as I listened to the sweetest sound I have heard since coming to Omaha. "Ashley, who loves you?" She proudly replied, "My mama". Oh! how much I enjoyed it. Just when I need it the most He continues to lift me up and bless my heart. I love that He knows my every thought and my every need. As scratchy and hoarse as she is it was absolutely the most beautiful, little voice I have ever heard.

Just to make sure I wasn't dreaming I have asked Ashley to say it over and over again this morning. Sometimes she just shakes her tiny head "no,no" and grins, and other times she will say it for me. I love this little girl. We are practicing all day so that her Daddy can hear her when he arrives on Tuesday.

Ash will start a new blood pressure medicine this morning. Her blood pressures have been very high for a couple of days now. She is also coughing up a bunch of "junk" so she has to sit up for awhile. She is sleepy because of her refusal to rest at night, so she is starting to be a little grumpy at me. I don't mind. I actually enjoy seeing her display a little attitude. It is really kinda of cute at this point as she shakes her head "no" to me and waves her little hands as I try to give her toys to occupy her time.

The weekends are long and slow around here, especially when Dave is not here. We are counting down the days until his arrival. I can't wait for him to come hang out with us girls. I am so thankful we don't have a kitchen for him to "get his groove going" here in Omaha. If only you all could see him dance. It always provides a good laugh for all of us. I am just glad he found something to do while the kids were away. Please pray that he will just go to Taco Bell today and stay out of my kitchen!

A smile on my Heart...

Tonight the kids made it in to their Aunt Kathy's house after what sounds to be quite an adventure. Dave said that Nan called at least 4 times asking for directions during the trip. My mom is not the best at remebering directions, but I am so thankful that they arrived at their destination. My sister called to let me know that they had made it in, and my heart began to smile as I could hear my Allison just rattling on and on in the background as she caught up with her cousins. Even though I am missing Blake and Allie, I am so very glad they decided to go visit in Oklahoma. My heart is smiling as I think of all the fun they will have there with my sisters.

When I think of how it feels to arrive at my sisters house, my heart can't quit smiling. Of all the places in the world I could go visit their houses are my absolute favorite. When you arrive at my sister Kathy's house they just have a way of making you feel at home. David and I have always felt so comfortable and welcome there. One of the first things you receive as you walk in the door of their home is a big bear hug from "Umple Gene". You have never been hugged and I mean really hugged until you have been hugged by my brother in law Gene. It is the greatest feeling in the world. He has got to be one of the best people I have ever known. You will never meet a better person than Gene Chambers. After your hug from Gene, you are sure to be tackled by Jake and Jessie who are always so happy to see you. Then I see my sister Kathy and she shares that little grin with me that lets me know how glad she is to see her old friend finally arrive.

When you go to visit at my sister Toni's home, you have officially made it to the "Bruner Resort". This is a definite must on your travel plans. If you could imagine the best bed in breakfast around you might have a glimpse into what it is like to go visit. We all love to take our turn at the "Bruner Resort". My sister is the best hostess and most incredible cook in the world. She can do anything, and as she so faithfully taught all of our children to say, "Aunt Toni's food taste better because she cooks it with love". Imagine listening to that each morning as you faithfully burn Blake and Allie's biscuits.

The best thing about my sisters homes is the fun that we all as a group of friends have in them. We love to sit up late into the night and play board games until are eyes can't see anymore. We love to laugh and talk for hours. We love to make a huge deal out of every holiday and use them as excuses to all get together. The birthday parties are the best! How my heart smiles as I think of all the fun Blake and Allie will be having this week. My heart begins to smile even bigger as I think about how wonderful it will be when my Ashley is well enough to become a part of these special visits. How blessed she will be as she is allowed to grow up with this incredible group of people. Tonight I am missing my best friends who just happen to be my family. As I celebrate this Thanksgiving Season, one of the things I will be counting as a blessing is this family that He has allowed me to be a part of. Just thinking of all the wonderful times they will be having this week puts the biggest smile on my heart. Be sure to save a spot at the table for us next year because we plan on providing the "Gherkin(s)"! I love you guys and miss you! Good Night.

Play That Funky Music White Boy"

OK, so where do I start. I am not much for being alone. I don't really care for being alone. I always come home for lunch, but today the kids and Nan left for Oklahoma and I didn't want to go home to an empty house so I had lunch with a friend and that was very enjoyable. Thanks Sam. After work I went to help out with the AMBUCS garage sale and that was fun. I enjoyed being around old freinds and making some new ones. At the end of the garage sale I decided to buy a golf caddy that had not yet sold, you know that thing with wheels that holds your golf bag. The funny thing is that I have not golfed in over 5 years and didn't plan on golfing anytime soon. However the price was right and mine was falling apart so I bought it. Sue, Ashley's physical therapist, was there and she saw me buying the golf caddy and invited me to go golfing with her tomorrow. I accepted, and I am glad she invited me. The only problem is she has been taking lessons,and I have never really been good at it, so tomorrow I am thankful I will provide a good laugh for Sue.

At around 6:30 I was on my home and was feeling a little hungry. I am very tired, but I am sick of eating Taco Bell, Burger King and Fazollis so I decided I would just go home and cook something. I am not the best cook in the world, but I do like to experiment. I was not really interested in cooking a big meal, but in fact that is the only way I know how to cook. I don't cook from a recipe, I use a CD. Tonight I found one I made a while back called "Travel Music." It was a collection of songs I made after a Caribbean cruise Trish and I took a number of years ago with some friends.

I found a few pumpkins in the kitchen and my favorite thing to eat this time of year is baked pumpkin seeds. So I started my dinner with pumpkin seeds and some soft caribbean music. Things were great. Then I decided to try out the french fry cutter. After I cut the potatoes I realized that I don't like to eat geasy fried foods so I tossed in a few spices and put them in the oven. By this time I am starting to get my groove on because the CD is playing the YMCA. Now if you know me you know I can't sing, and I certainly can't dance, however the YMCA is planying so you have to do it. I closed the kitchen door so nobody could see me from the road and began dancing. If I have to be all alone I might as well get my groove thing going. SCARY!!! I now have the pumpkin seeds and the potatoes in the oven and I got things happening in the grooving department.

I am beginning to realize that pumpkin seeds and baked potatoes shaped like french fries are not exactly dinner. I need a meat. Everything is frozen, and I don't want to take the time to thaw anything. I looked around for awhile and I found some shrimp. Yeah, shrimp, that doesn't take too long to thaw. So I get out the shrimp and began to rinse it. I loose track of time for awhile as now the CD is playing "Play that funky music white boy." You should see me, I am now taking up half the kitchen with my ridiculous dancing! I decide that the best thing to do with the shrimp is to make shrimp scampi. That sounds really good, but I am still tired and I don't want to mess with crushing the garlic, so I stray from the plans a bit. I have the butter, white whine vinegar and lemon in, but I just don't want to do the garlic so I decide to change Shrimp scampi into a mexican dish. I add some chili powder and Chili con limon. Hey!!!! this is sounding pretty good.


BUZZZZZZZ... the alarm is going off and it is time to check the pumpkin seeds. I have an idea. I love pumpkin seeds, and I love shrimp scampi(or whatever it is I am cooking). How about I put some pumpkin seeds in with the shrimp to give it a little texture? Now I know what most of you are thinking and you are right. This was a really stupid idea! However by this time "HOT HOT HOT" was playing on the CD and I was so overcome by my awesome dance moves that I must have been temporarily insane. I think the heat was getting to me or something. I threw in a bit of leftover corn and rice with the shimp and it was almost time to eat. The phone rang and it was Trish and she asked "what are you doing?"

"Cooking."

"Still ?!!? you have been cooking for two hours"

OK, I told you I was not very good at this. How is it that a woman can cook a wonderful meal in 15 minutes and I have been cooking for 2 hours and all I have is some kind of weird shrimp and a bunch of pumpkin seeds?

I got lost somewhere between the "Macarana" and the "Tootsie Roll!" Slide to left...Slide the right.... to the front... to the back... now dip baby dip, dip baby dip.

I think tomorrow I will just go to taco bell.

You guys have a wonderful night and thank you for checking in on our Gherkin.

Goodnight,

DAVE