Bringing in the New Year

Well the count down is on for us here in Omaha, NE. The kids has so much fun sledding today that their "dad" aka "the biggest kid I have" has made a promise to let them SLED into the new year. Is he crazy? The answer to that question is YES!!! Blake is so excited he can't stand it. Only 1 hour and 45 minutes to go. At exactly 12:01 a.m. we will be freezing our tails off, flying down the snowy hill on a piece of plastic, giggling and squeeling uncontrollably, and making a memory in the hearts of our 2 oldest children that I pray will last a lifetime. I really love our life!

When I think back over the past year my heart floods with memories that bring me to my knees and fill my eyes with tears. God has really been working in our lives. The year started for us with great hopes that we would soon bring our tiny Ashley Kate home for the very first time. What an amazing feeling it was to buckle that sweet baby into her car seat on January 20, 2006. As I pulled into our drive way I cried tears of joy knowing that she was finally home where she belonged. The next few months were full of hope as we started working with a new team of doctors to try and get our little one to grow. As we approached the month of April it was finally time to realize that our Ashley's liver disease was advancing to the point that we were facing the idea of transplant. On May 1, 2006 I turned 32 and was told by a team of doctors in Houston that in their opinion my daughter had 3 to 6 months to live. I will never forget the flood of emotions I experienced that day. My heart ached like never before and my eyes burned with tears. I don't know if there is a word that can describe what it feels like to know that your child is going to die. On Memorial Day weekend we took our Ashley before our church family for the first time in her life. As we held her in front of the body of Christ our Pastor dedicated our child and her life to the Lord. We came honestly and boldly before the throne of God and willingly gave her back to Him. That morning as I sat and wrote the first page of Ashley's story for Pastor Tom to read to our congregation I realized that I would not walk this road alone. For the first time in my life the sacrifice that God the Father made for me as He too watched His child die became real. I knew that I had a Father in Heaven who knew exactly what it felt like to lose a child. I also realized on that day that my church family would not allow David and I to go through this with Ashley on our own. They were standing with us, loving us, supporting us, and praying for us. On June 7, 2006 we stood before the judge and celebrated "Gotcha Day". Ashley Kathrine Adams was officially ours not only in our hearts but now in the eyes of the law. There are no words appropriate to describe how good it felt to know that she would never be without us. We were her family. We were her parents. We were blessed. On August 4, 2006 my sweet Ashley celebrated her 1st birthday. It was such a sweet moment in our family. We had been given 365 days to love this little girl and our hearts were full of thanksgiving. On August 20, we boarded a plane with our youngest daughter and left our Blake and Allison back home in Texas alone without us for the first time in their lives. David, Ashley and I came to Omaha for her transplant evalutation. After 3 weeks of being apart from Blake and Allie, I finally came home with Ash. She was listed on the National Transplant Registry and now all we could do was wait. Over the next 20 days we watched her laugh, we watched her grow, we watched her play, we watched her grow tired, we watched her begin to slip away. Each night my heart and my burden for my Ashley grew heavier and heavier. Doubt and fear began to slip into my mind. Each night I dreaded for sleep to come because of the nightmares that were sure to follow. I would walk from room to room watching my 3 children sleep and beg God for the chance to have them all live. On Sept. 26, 2006 we got "the" call. UNBELIEVABLE! It had only been 20 days since her listing and God had provided. I can't tell you what I felt that morning as I ran from room to room trying to pack the 5 of us as quickly as I could. I thanked God for His provision and I begged Him to please, please not let this be my last day as her Mommy. I loved her. I needed her. I couldn't let go of her. That night we handed our daughter, our precious gift from the Father, the child we prayed for, to the surgeon and watched her be carried away from us. We had no idea if we would ever hold her again. At that moment I learned to trust the God of the universe. The next 3 months I have spent sharing her story(our story) with the world through Ashley's Journal. There have been hard days. There have been scary moments. There have been sleepless nights. There have been celebrations. There have been heartaches. There have been moments of praise. There have been realizations of just how BIG our God is. There have been memories made.

As I sit here tonight and watch this year end all I can say to you is that I know that God is real. I know that He loves me. I know that He loves my Ashley. I know that He loves you. I know that He will be with us tomorrow as we allow her to go back to the OR. I know that He has a plan for her life. I choose to approach tomorrow with the hope that He has given me. We will walk into this new year as a family of 5. We will walk into this new year with all of you. We will walk into this new year ready to see what He will do in her life and in ours. Thank you for sharing your time with us. Thank you for walking along side of us. Thank you for crying with us. Thank you for celebrating with us. Thank you for loving us. May God bless you and Happy New Year. Trish

"How do you make a snowball?"

Well it is almost 5:00 and I have not seen Dave or the kids yet. They have been at Memorial Park sledding all day. I just talked to them and they are so thrilled! This was the best blessing ever. I am so thankful they were able to see the snow before leaving for home. Allie brought me a snow measuring stick when she arrived here two weeks ago. She proudly with the faith of a child stuck it in the ground outside our patio at the apartment. She wanted to know exactly how much snow would be falling while she was here visiting. I was so afraid she would have to leave disappointed, but God knew the surprise he had in store for her. This morning as she went outside she asked, "Daddy, how do you make a snowball?" We really do have to take them to see snow a little more often. I am afraid that we may be the only people in Omaha who are actually celebrating the snow. All of the people we have talked to about it are not as happy as we are to see it arrive. It seems to have made several people grumpy, but not us. We are just feeling blessed!

Ashley looks really good today. She has spent most of the day sleeping, but we have been fever free for over 24 hours now. She has a tight grip on her Tic Tacs and she won't let go of them even in her sleep. She makes me laugh. I can tell when she is really relaxed and sleeping good by the sound of the Tic Tacs shifting in the box.

The halls of the PICU are full once again. Most of the patients are very, very sick. My heart is broken as I learn of all their stories. Next door to us there is a seven year old little boy fighting cancer. He is such a beautiful child. Oh how I hurt for his parents and grandparents. Down the hall from us is a transplant patient who is 3 years post. 13 days ago he went into rejection and he is trying to battle back. He is only 4 years old and he is an only child. His parents are also from Texas and they have the same team of doctors we use in Dallas. They are precious people. Kiley and Skyler are still here. Both are about the same. Ginny is still across the hall from us and she has such an amazing spirit. Along with these that I have mentioned there are several others who are struggling also. The halls of this unit can be so lonely on the hard days and a smile from another parent can mean so very much. I pray that they all know how very much they are loved, even if it is from a distance.

Dave and the kids are on their way here. We are going to spend the evening playing board games in the family room and snacking. After spending a day outside in the bitter cold air I am sure they will welcome the warmth of this place. I hope to breathe in every minute of our evening together and make memories that will carry me through until the next time they come to visit. I will miss them terribly. We all spent New Years Eve together at the hospital in Dallas last year and this year it will be a repeat event except our location has changed to Omaha. No matter where we are as we bring in the New Year the important thing to David and I is that all 5 of us will be together. For this we are truly thankful.

Blessings!!!

I woke up this morning to find snow on the ground. How blessed I am as I watch the snow fall. I know it sounds ridiculous, but I feel as though God Himself gave this snow specifically to my children and my husband. How wonderfully excited they are. The last day of the year, the last day of our visit together could not be ending more beautifully than this. Thank you Father for loveing us so much that you care enough to make it snow just so I can see the smiles on their faces and in their eyes. My heart is feeling so blessed!

Dave has gone back to the apartment to pick up the kids and take them to Target to get gloves and hats and something to sled on. Since we live in Texas where it never snows we have only packed T-shirts and Crocks. I wish you could have seen the smile on the face of the "big kid" I married when I walked into Ash's room this morning to wake him up and tell him of the snow. I probably won't be seeing them back here at the hospital for hours.

I would like to say a huge THANK YOU to two of our nurses (Jaka and Emily) for ordering this snow for us. I love you both for "getting" it here just in time before the kids left. You guys along with a few others have made our stay here so much better and Ash and I love you for it.

Ash looks really good this morning. She is having to be stuck for all lab draws today and this makes me crazy. I know that replacing the line is what is best for her, but it is so hard to watch her be stuck again and again. Transplant life is not fun, but it is LIFE! For that we will forever be grateful to the Father, to our donor family, and to the staff here at UNMC. Tomorrow she will go down to the OR around 7:30a.m. so Dave and the kids will still be here with us. I am so thankful for that. One of the hardest things I have to do is sit in that surgery waiting room alone. God is so interested in the very details of our lives, and He knows how much I needed Dave to here with me.

I am thinking that starting the new year with a new line and a new hope of feeding our Ashley is a step in the right direction. I pray that this year holds precious memories, progress for Ashley, and a move for us back home to Texas. Even in the midst of difficult trials this year, God has blessed my heart and my family immensly. Our Blake and our Allison are beautiful, happy and healthy. Our sweet Ashley Kate is beautiful, happy, and alive. Our marraige is beautiful, happy, and stronger (even though we live miles and miles apart) then it has ever been. Our faith is beautiful, it makes us happy, and it is healthier and stronger then it could have ever been without the struggles we have had. To think that the very Creator of all the universe loves my family enough to be intimately involved with all that we do is a humbling realization.

May God bless you and your loved ones today and every day of this new year. May you seek Him with more of yourselves than you ever have, and may you wake each and every day knowing how very much He loves you. Thank you for caring about a tiny, baby pickle and her family. We love you. Its time to go watch the snow! Trish

The day is gone and all is quite now. Ashley is sleeping like a good little Gherkin. All in all I think she had a good day (aside from all the sticks). She looked really good today, had lots of energy and even started to show us some of her smiles. She got her central line taken out today and Monday they will put a new one in on the right side of her neck. Trish the kids and Nan have gone to sleep at the apartment and I am staying here with Ash tonight. I am starting to realize that my time here is fading and I want to hang out with her a little while longer. Sometimes I like to just sit and watch her and praise God for all He has done in her life and ours. I also thank Him for each of you who continues to pray for Ashley and our family.

Goodnight,

Dave

Success?

After 6 sticks anesthesia finally accomplished placing one IV in Ashley's tiny hands. They were requesting two IVs, but her mommy has had it. So if you consider 1 of the 2 successful then we have accomplished something. We are now praying that it will not blow in the next 36 hours. If it does they will have to physically take me out before I allow them to go after her again. I am afraid that after holding my tongue and my frustrations in for over 3 months I have finally become successful at earning the red X on our door. After today it may be difficult to find someone willing to take care of my Ashley. I really tried to be respectful, and I did not say anything ugly. I just REFUSED to allow them to attempt a line in her head or her tummy. I refused to allow them to continue poking and poking in unsuccessful attempts. The nurses are amazing around here and if they can't get it then I know that no one will be able too. I pray they will forgive my behavior today and that they will be able to understand what it is like to watch your child lay there and scream as they try to poke needles into her tiny, tiny veins. Until you have been in that position I am not sure you can understand how protective you automatically feel towards your baby. Today has been ugly and I do not wish to repeat it. Why does it have to hurt so bad?

If they do lose this IV then I will request that they take her into surgery early. Dave and I are having a small disagreement about that. I hope that it does not come down to this. He is much tougher than I am, and he tells me that if we lose this one he thinks they should be allowed to try and place another one. I say NO. Enough is enough. I do not want Ash to have to go through anymore than she already has. Please pray that this site will hold. I can't imagine putting her through this again. We are now waiting for the liver team to come and pull out her central line. They are wanting to have a 24 hour period without a central line in place in order to kill the staff that is in Ashley's blood stream. Please God, let this IV site hold until Monday morning.

In typical Ashley style we are not ending 2006 in a good way. I am praying that as we go out with a bang that we will usher in the new year with lots and lots of good news and progress. I am excited to see what God will do in our lives in 2007. Thank you for praying for us today. It means more to us than you will ever know. Trish

Still trying

3 sticks, 3 pokes, 3 nurses and no luck.

How hard is it to get a little pickle juice.

We are praying for the next attempt.

Sticks and Pokes

Unfortunately we will have to have Ashley's central line removed. It was our hope that this would not be necessary, but it must be done. Ashley's blood cultures have returned positive again this morning. She is currently battling 3 different strains of staph infection. The good news is that it has not attatched itself to the valves in her heart. So we will give thanks for that. They will be attempting to place 2 different peripheral IVs in her and then they will pull the line and schedule her for surgery Monday morning. Ashley is so very tiny that it makes it very difficult to stick her. Her veins are small and they do not hold IVs well. My prayer is that they will be able to get them in quickly and as painlessly as possible for her. Then I pray that she will not have either of them "blow" before her time in the OR on Monday. They have agreed to give her a little sedation before beginning the attempts at placing them. I am so thankful for this. I hope she will not be aware of what they are doing to her. They tell me that this current line has been in for a long time. It was placed during her transplant 3 months ago. It seems like such a short time compared to the 14 months we kept her original line. How unreal it is to us that she is still requiring a central line. Our hope had been that she would be off of TPN quickly post transplant and that our days of line care would have ended. 3 months post transplant and her only source of nutrition continues to be TPN the very thing that caused our need for transplant in the first place. The good news is that we know her new organs work when we use them. If only we could get her to a place where she is infection free so that we might begin to work on her feeds once again. Today is a tough one, and Monday will be very stressful for me. Not only will Dave and the kids be leaving, but Ashley will also go into surgery. I dread sitting in the waiting room alone. As I sit and type I am reminded of the verse that tells me (paraphrased in my own understanding, " That He who begins a good work in Ashley will see it through until the day He completes it." I know this too must be in His plan for my sweet Ashley Kate.

Please pray for her as she must endure several sticks and pokes today. I thank you in advance for your prayers on my daughter's behalf. Much love, Trish

Awnry!!!

Well she is finally sleeping after a very eventful night. Ash perked up a little tonight. No fever so far (since around 4:00) color in her cheeks and awnryness in her eyes. She was looking so good I thought she might like for me to pick her up and let her perch herself on my right arm. This has always been Ashley's favorite spot. So silly me, I thought this precious bundle of baby girl all dressed in pink would be content to just sit there while I sang her a little lullabye. My song lasted a whole 1 minute before Ashley unleashed a waterfall of TPN. Honestly, it caught me so off gaurd that it took me several minutes to figure out just exactly what she had done. I was literally being drowned in sticky, smelly TPN. The rush of fluids was so strong it was splashing off the floor and back up to my face! What did she do? My sweet Ashley decided to pull the spike out of the bag of TPN while I was caught up in the moment of cuddling this little gift from God. I couldn't hold her and plug the hole she had opened in the bag so the fluid continued to rush out onto the floor and everything else. I began to holler for our nurse. Thankfully it was one of our very favorite who happens to love my Ashley enough to see the humor in this situation and not get frustrated at the amount of extra work we had just created for her tonight. So in she came to save the day, and after a few phone calls to the pharmacy and house keeping we began to get control of this uncontrollable situation. The good news about tonights exhibit of awnry behavior is that I was allowed to hold my "sweet" girl for a few minutes without a "thousand" tubes and wires connected to her. She was free even if it was only for a brief moment in time. The bad news is that they will happily add about $1200 to our bill! Freedom really does come at a high price. The smell in the room is so overpowering that even our lovely Hawaiin Breeze airfreshners that have made Ashley's room a popular hangout aren't strong enough to kill it. Poor Nan, she will be sleeping with the very strong and potent smell of the necessary "poison" we push into our baby everyday.

Let me just say that dinner at Romeo's will not be a repeat event for this family, and Dave has decided that after tonight he will be the one choosing our dinner selections. They definitely don't compare to our Pappacitas back home in Longview. Well, we are on our way to the apartment for the night. Praying for an uneventful night for our Ashley with no phone calls to tell us to rush back up to the hospital. What a blessing it has been to have Nan here to keep watch over Ashley at night so I can tuck my Blake and Allison into bed. I can't tell you how many times I wake during the night just so I can go look at the two of them sleeping and place those secret kisses on their foreheads. I have even been able to enjoy holding hands with my best friend as I drift off to sleep at night. How I long for the day when I have all three of the children back at home tucked safely in their own beds while I lay down next to Dave and call it a day. We have 2 more days together before they all fly home and Ash and I stay behind. I hope to make the most of the time we have left. God has been so good to us this holiday season, and we have so enjoyed being a family again. Take care and may He keep you and your families safe through the night. Goodnight and God bless. Trish

Feeling Pretty

Ashley woke up this afternoon from a very long nap and we decided to sit her up and try and get her to play. She cooperated to the best of her ability. When you are running a fever off and on every couple of hours you just feel yucky, but she tried. She finally dug into her Christmas stocking and found her stash of Tic Tacs (this is one of her favorite things to play with). She sat up and shook them with all the energy her tired little body could muster. She then found a new pink (imagine that!) brush and comb set. She proceeded to drop her Tic Tacs ( I'm afraid all I could find was orange ones) and start brushing her own hair with the back side of the brush. After she made herself feel pretty, I placed a very large adorable bow on her head and she once again began to feel like her old self. All it takes is a little hair brushing and hair bow to make a gherkin feel like a girl again! There is no doubt in my mind she is destined to become a PRINCESS. In addition to fixing her hair she received a much deserved foot massage (she is so spoiled!) and a clean pair of pink p.j.s. She is now on her way to taking another nap.

Dave and the kids have been out all afternoon doing a little "Geo Cashing". I think that is what it is called. I really won him over this year with the birthday gift I chose for him. I had no idea I would make him so happy. Dave loves to go mountain climbing. Trust me, he is not a professional just a hobbiest, and I make sure he checks up on the insurance policies before he adventures out on his treks. This year I was walking through the store and came across a little device that allows you to pull up mountain trails and all kinds of other junk. I thought to myself he might actually like something like this and maybe he might manage not to get lost on his next adventure. Guess what? He loves it, and he thinks I'm a really great wife now! ( as if mothering his 3 children wasn't enough to convince him of that) Anyway, he and the kids now have a new hobby of using this little device to run around town looking for "treasures" that other men(no doubt) have hidden in towns and cities all over the place. They are having a great time together and that is what I love about it. Today they came back with a very dirty deck of cards and a bracelet. Yeah for them! They went 2 for 2 today. They left behind a pair of glasses made from a slinky and a tic tac toe board. This is great stuff if you are an 11year old or an 8 year old or a giant kid trapped in a 33year old's body.

Tonight is Allie's night to choose where we eat dinner. Since there is no Pappacita's she has chosen a place called ROMEOS. I am feeling a little nervous about this choice because their slogan is "NACHO TYPICAL RESTAURANT". This is announced on very large bill boards all over town by a giant, hairy, jalepeno wearing a sombrero! They serve a combination of mexican food and pizza. Sounds like a really classy place. Oh, well we will go anywhere just to have a Taco. It's really tough being a Texan stuck in Nebraska. There is a short supply of tacos around here!

Just let me say thanks again for coming back to Ashley's Story today. Your presence on this website is so appreciated. How I look forward to meeting all of you someday. Your prayers are precious to us and they are making a difference not only in the life of a "baby pickle", but also in the lives of her family. We love you and pray His blessings on you all. Trish

Nothing shall separate us...

What a long morning it has been. The news received in report was not exactly what I wanted to hear. Ashley's cultures from yesterday are still showing positive growth. We had hoped that the infection would have started to clear from her blood stream by yesterday. This is not what happened. They just finished an eco cardio gram on her checking for possible staff attatched to the heart valves. We do not know the resutls until the cardiologist reads the report. We are desperately hoping to save Ashley's line. It may not be possible if the bacterium does not start to clear soon. If there is staff on her heart valves then it is likely that it is also attatched to the central line too. The new place for a line will be in her groin area. I have hoped to avoid ever placing a central line in this area of her. Ash has continually spiked a temp every couple of hours over the last 12. Her heart rate and respiration rate also climbs along with her temperature. I am praying our "new" prayer list specifically several times a day. My prayer is that God will allow her to stay off of the ventilator. All in all, my sweet Ashley just feels crummy today. She is finally resting and I hope that during this nap her body will do some really good healing.

I am fighting a heavy heart today. Along with Ashley there are some really sick children on the floor today. This battle is not mine alone. There are countless mommies sitting in ICUs all over the country praying the same prayers for their children that I am praying for mine. The one thing that I know with an unwaivering faith is that the Father is with all of us. He is listening to my prayers along with the many, many other parents who are crying out for their children as well. I know that He loves my Ashley. I know this because of what He promises me. I know this because I believe that God is holy, and righteous, and loving, and just. I know that He wants what is best for my daughter, and I am trying to tell myself that all of this is happening for a reason. When you love someone you want the very best for them. Sometimes what is best for us hurts. Sometimes it is hard. Sometimes it may take a while for us to realize that what is happening is for our own good. Today I am thinking that this difficult course my Ashley is on is for His purpose. He has a plan for her, and He is working it in her life. There is a scripture that has been on my heart since I woke up early this morning. I don't know why, but I have repeated it to myself more times than I can count today. Romans 8:38-39:

"For I am persuaded that neither death, nor life, nor angels, nor principalites, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature shall be able to separate us from the love of God, which is found through Christ Jesus."

So I know without a doubt that neither prematurity, or NEC, or short bowel syndrome, or liver disease, or strabismus, or transplant, or sepsis, or bacterium, or staff, or death, OR ANY OTHER THING shall be able to separate my Ashley from the love of God. He loves her, and because He loves her He wants to do what is best for her. I may never understand why she goes through all that she does, but I do understand that God loves her and He loves me. Today it is this understanding of what He promises me that will help get us through until tomorrow.

Snowing in El Paso

I don't have any real news about Ash this morning. She has been asleep all day so I have not even seen her eyes yet. The heart rate, respiration and fever thing are all about the same today. We will post more after rounds.

While getting ready to go to the hospital this morning in the apartment I could hear Blake in the other room just disgusted. He was watching the weather on the news and they were reporting snow in El Paso. What is going on? I don't believe in the theory of global warming, but rather OMAHA WARMING. This is just crazy!! They tell us they never get to the end of the year without snow. They tell us there are many years when it snows in October and the snow remains on the ground all the way through the new year. Well due to OMAHA WARMING those days are gone. We were in the car on the way to the hospital this morning and it began to rain Blake said, "now we have the moisture and not the cold." Last week we had the cold but no moisture. UUUUGGGGGHHH!!! I told him Omaha was broken this year. He said "yeah, the dogs are all running away, the bridges are collapsing what is this place coming to???" I see the team assembling down the hall so we will post after rounds.

DAVE

Fastest Gherkin in the West

We took Blake and Allie out to dinner tonight and then stopped by Target to pick up some baby fingernail clippers. Around our house Dad is the only one that clips the nails and Ash's were getting pretty long. Great for ripping off Dad and Blake's face, but bad when Gherkins get the sleepy eyes and start rubbing them. Anyhow something as simple as going out to dinner and then a routine errand like Target was just so enjoyable for us. We have found that our cell phones don't get reception in West Omaha which is the only area of Omaha we are familiar with. When we finally started heading back towards the hospital (downtown Omaha) and picked up reception we saw that we each had voice mail on both phones. This got our hearts pumping as we were trying to retrieve the messages. It turns out that Ash has spiked a temperature and was feeling yucky. We got back and found that she does indeed have a pretty high temp, but I am not overly concerned. Editorial: This immunosuppresion stuff really stinks! I was however concerned with her respiration and heart rate. She was breathing about 90 times a minute and her heart rate was in the 170s. These were way to high and the last thing we want to do is have her go back on the vent. I started clipping her nails and after a few she opened her eyes to see what I was up to. Trish gave her a wet wash cloth and well you have never seen a Gherkin grab something so fast. She was like a bolt of Gherkin Lighting. Not even Larry Boy could keep up with our little pickle. Our theory is that she is a little dehydrated and thus this was part of the problem. Well now that we or I woke her up we might as well play with her right? So as we start playing with her her heart rate and respiration begins to improve. Everyone knows with activity that these numbers are supposed to go up, but not with Ash. We have learned that nothing is ever normal with Ash. She calls the shots. We have a new nurse tonight who has not had Ash before and she told us yeah, I heard she does this. No wonder nobody can figure this girl out, she does everything her own way. I am already starting to pray for the man that will marry her one day. Poor guy. As if women aren't already hard enough to figure out. Now I am off track, forgot what I was talking about.

I am thanking God for a good day for Ash. Thanking Him for her coming off the vent today. Praising Him for allowing me to hold my little Gherkin today. Thanking Him for giving us all time together. Thanking Him for each one of you who are such an inspiration to each one of us.

Goodnight,

DAVE

Point of Correction

I just read Trish's post and realized one thing. I think Ash is going to sleep not because she likes my singing, but rather to escape it.

DAVE

"I Love You"

I just walked into Ashley's room and saw her Daddy rocking the most beautiful baby girl in the world. He whispered to me above her large white hair bow, "I love you." He then pointed to the baby in his arms and whispered, "I love this." Next he pointed across the room and said, " I love those, too." (referring to our Blake and Allison). My heart smiled at the words he spoke, and I replied, "Its a good life we are living."

How sweet it was to watch Dave rock Ashley to sleep. She has got to be the only person I know who enjoys listening to him sing. She never complains. She just looks up at him and acts as if she likes what she hears. Eventually she drifts off to sleep. How blessed we are to be able to hold this little one in our arms. It has got to be the best feeling in the world.

After Ashley's bath she sat up in her bumbo chair and spent some time opening Christmas gifts with Blake and Allison. She played with each gift for just a brief moment, before beginning to yawn and rub her little eyes. She was tired and this was the opportunity Dave has been waiting for since he arrived last week. Before I could even think about picking her up he had scooped her into his arms and laid claim to our "favorite" blue chair. Honestly I didn't mind. I just sat back and thanked the Father that He gave Blake and Allison and Ashley this amazing guy to be their dad. They are truly blessed.

Tonight we are taking Blake and Allie out to eat at Blake's favorite restaraunt the Red Robin. He is so excited about the never ending baskets of fries. It doesn't take much to put a smile on this boy's face. My mom will be sitting with Ash while we go out with the older kids. I am looking forward to spending time having dinner out together. Tomorrow Allie has announced that she will be choosing where we go to dinner. I am not sure what she will come up with because I haven't seen a Pappacitas here in Omaha. Last night as we drove home (how odd it seems to be calling our apartment in Omaha, NE home!) David had asked Allison a question and she replied, "yes, sir." He quickly thanked her for being so polite and said to her, "You sure have come a long way." She then replied, "Yes, I have and I am so glad we flew this time. I don't like being in the car for 14 hours!" We all began to laugh at her and she couldn't figure out what we thought was so funny. She then said, "I mean it. I don't ever want to drive all the way to Omaha again!" Oh, how I love this little girl.

It really is a good life that David and I are living. We are blessed beyond our wildest dreams. We have a beautiful family, with 3 amazing children. We have friends from all over who love us enough to check in our little one daily. We have a church family full of the most amazing people who love the Lord and who have been there taking care of us throughout Ashley's story. We have a support system larger than I could ever count, and we have a Father in heaven who loves us so much that He gave His only Son so that we could know Him for all eternity. Life doesn't get any better than what we are living. Thanks for making our life so great. I hope and pray that someday we will be able to bless you all as much as you are blessing us. Trish

She is looking Good

This morning my Ashley looks so very good. She is responding to treatment quickly this time. We are so encouraged by the progrees she is making in fighting this round of infection. They have now taken her offf of the ventilator and she is breathing well with only 1 liter of oxygen support. She has had a very busy morning. They have also removed her catheter. Late yesterday evening they removed her art line. With every removal we are inching closer and closer to being allowed to hold our little one. What a blessing it will be for Blake and Allison to hold their baby sister for the first time in MONTHS! We are more than excited. I wish you could see her reaction each time one of them come into her room. Even while on the ventilator she gets so excited she looks like she might jump off of the bed. She kicks her little legs and waves her arms. She smiles and waves "Hello" to them repeatedly. She loves to grab their faces and pull them as close to her as she can. What a blessing it is to watch our three children play together.

There are many, many things going on with Ashley at this time. One of the cultures has actually grown out a mold. They are not sure if it is really in her lungs or if the smear has become contaminated. They have done the CT scan, and radiology seems to think it is postules of mold growing. The Infectious Disease team do not really agree, because when they look at the films they feel as though the areas of concern are to circular in shape. The ID team also believes that the quick response to treatment supports their opinion. If it were a mold growing in her lungs they say it would take weeks and weeks to respond. I don't know exactly what it is, but I do know that God knows. I am trusting Him to resolve the issue. At this point we are all agreeing that a lung biopsy is too aggressive. We will just continue to treat as we are and see if she continues to respond. They would like to do another CT scan early next week to see if things are changing. We have consented to this.

Things seem to moving in a positive direction this morning. Ash is quietly resting in her hot pink boppy pillow and she looks absolutely beautiful. She will get a really good bubble bath and a shampoo after she wakes up. Her daddy plans on giving her a little manicure, and then Allie is going to choose just the right pair of pink jammies for Ash to relax in. We are counting our many blessings this morning and as we count them our list includes all of you. You are the support system that makes it possible for me to feel strong. You are playing such a huge part of our Ashley's story. I can't say thank you enough for praying for my Ashley. Thank you for checking in on her today. We love you guys. Trish

Answered Prayers

Goodnight from Ashley's Room. Today has been a wonderful day. Ashley was awake most of the day (probably too much) and played and entertained us all. She felt good enough today to sit up and open her Christmas presents. I just thanked God and praised Him as I watched her tiny hands reach up and tear the paper. I was just in awe of His power when I saw her so close to death and struggle so hard just yesterday. It was truly incredible to see how quickly she has come back from yesterday's struggles. Ashley's struggles and triumphs have taught me so much about God and I have grown so much in my own personal walk with Him. Today was just another example to me of God's grace and His power. I know so many have you have been praying for our Gherkin and it has been amazing to watch as God answered those prayers today. I know I have said this many times before but again I would like to thank you for your prayers for Ashley and for my family. Thank you for your comments and guestbook entries as we draw so much strength from them. Thank you for continuing to come back and be a part of Ashley's Story.

Goodnight,

DAVE

Our tiny Gift

She is one of the best gifts we have ever received. She is one of the most beautiful gifts we have ever received. She is the tiniest gift we have ever received, but if you could see what is inside of this little one you would be amazed at just how big she really is.

Today Dave and I met with a team of doctors, nurses, social workers, and transplant coordinators. Our goal was to try and figure out just what they "see" when they look at Ashley and the course of her transplant and recovery. Let me tell you that walking out of that meeting my heart was lighter. Our recovery has not been an easy course and it has not been a short course, but it has been a BLESSED course. We were able to all make sure we were on the same page when we look to Ashley's future. Knowing full well that God will be the one to decide what her future holds, we tried to form a plan. In the end one of the pieces of this recovery puzzle that I had really failed to add in was Ashley's size. When I look at my Ashley I sometimes forget that she is just so tiny. She is not and has not ever been a normal sized child. She was born at 28 weeks and weighed less than 3lbs. She remained at 12lbs from January of this year until August! At transplant in Sept. we had managed to add a pound and a half to make her a whopping 13 and half pounds. There is no mistaking it, my Ashley is tiny. After our meeting I realized that some of what Ash is struggling with is a result of her tiny little self. Everyone on her "team" feels that Ashley will make it. We are battling a round of sepsis. This is our 4th episode. Our list of goals include: Getting her off the vent (and staying off!), Getting her to full feeds (55ccs per hour), getting her off of TPN (for longer than 3 hours), and getting her central line pulled out! If we could get to the point where her line can be pulled then she has a great chance of avoiding the episodes of sepsis. Once she remains on full feeds and successfully avoids infections for a period of about 1-2 months then guess where we are going? HOME!!! This is my new prayer list. It is specific. It is what we need to happen so that we can bring our tiny gift back home. I do not feel as though this is impossible. I know that with God all things are possible. I know that if it falls within His will that she has what it takes to make it. She may be tiny, but on the inside her spirit is so BIG!!!

Please join me in praying for our "new" prayer list. If you could see my Ashley today and if you could have seen where He brought her from yesterday you would be encouraged. You would be amazed. You would never doubt the hugeness of our God.

Thank you guys for loving Him so much that you opened up your hearts to accept our tiny gift. She is tiny, but she is tough. I am grateful for your encouraging words, and for your prayers. I hope to share her with you all someday. I hope to give you the opportunity to see this tiny little girl who you helped to pray through. You are loved and you are appreciated! Trish

We found a Bug

This morning everyone is dancing in the halls because they have actually found a "bug" growing in Ashley's blood. I know it seems silly to be celebrating this, but she has been sick so many times without any known causes that this is actually good news for us. They have identified what has made her this ill, and they are now able to treat her with the right anitbiotics to kill this infection. She is actually already feeling so much better than she has over the last couple of days. She is on the ventilator, but she is awake and playing with all who pop in to visit with her. She has managed to smile a couple of times with the tube in her mouth and down her throat. Her spirit amazes me! She teaches me to be content no matter what circumstance I find myself in. I love this little girl!

We actually expect her and her x-rays to look worse by tomorrow. She still has her beautiful face with her sweet eyes and her tiny little nose, but the fluid will begin to shift soon and she will swell again. She received 4 fluid bolus' to maintain her status yesterday. Everything from a blood transfusion to albumin, and by tonight or tomorrow the sepsis will cause her vessels to become "weepy" and the extra fluids will shift into her tissues. I am more than thankful that God led us to this hospital. The doctors and nurses are incredible, and they did an amazing job for our daughter once again. I can't say thank you enough for the wisdom they used in making the right decisions for Ashley. Yesterday we watched Ash waiver between life and death. It was definitely one of the hardest days so far. Her lips had become blue at one point and the feelings of helplessness had begun to overcome me. I stood back and watched as God used the doctors and nurses to spare my Ashley. I will forever be grateful. After spending so much time here, I now have developed a "safety" net of friends who work at this hospital. They are so much more than just professionals. I see how much they care for Ashley and myself, and I am touched and honored to call them my friends. The nurses have become more than just our nurses. Several of them read Ashley's journal on the days when they do not come in so they can check in on her. I love these ladies and I thank God for their friendships.

Last night was Ashley's three month post transplant anniversary. As we watched her go through a CT scan of her head, sinus, chest, and then abdomen I was so humbled to see her amazing new organs. I am still blessed by the thought that a family would consider my family and my daughter's life during their most difficult moments. Ashley's new organs are working and functioning beautifully and without this gift she would no longer be with us. I know that if she can survive the immunosuppresion related infections that she will have a real chance at living a beautiful life. Please remember to lift up our precious donor's family when you pray for Ashley. Without this family our story would have ended.

Today we feel renewed. The Father tells me that, "His mercies are new every morning", and today I know that more than ever. I see life in Ashley's eyes. I see her awnry streak back as I watch her "tear" up Blake and Allie. I see her rosy cheeks. I see my daughter and she is still with us. She is strong. She is determined. She is happy, and she loves us. That is all I need to see. Tomorrow will be whatever it will be, but today I have seen enough. The mercy of the Father is evident in her life and mine.

Struggling for Words

I have spent most of the day doing my best to avoid this journal. I am struggling for words. Not just any words, but the right words. How careless my words must have been in the past. Perhaps the randomness of my thoughts or feelings caused some to wonder just who I am. What mother would allow her child to endure all of this? What mother would choose such a difficult situation for her family and her two healthy children? What mother would open up the heart of her family to become so vulnerable to the world? In all honesty, I must admit that I have often wondered what kind of mother would do these things. As I search for the answer to these questions I continually find myself saying, "The kind of mother that I want to be. One that will not give up. One that owes it to all of my children to do the right thing no matter how difficult it may be. One that strives to teach them that God is gracious, and kind, and merciful, and just, and loving, and faithful."

On this journey that I find Ashley and myself walking hand in hand, I have learned many things. I have learned to love more. I have learned to laugh harder. I have learned to smile bigger. I have learned to understand deeper. I have learned to value my "treasures". I have learned to forgive fully. I have learned to judge never. I have learned to offer honesty always. I have learned to respect. I have learned to take the good that people have to offer and to leave the bad behind.

I would like to say that although my heart hurt and my tears fell, I appreciate the honesty in which the words were spoken. I respect the one who was brave enough to pose the questions that I am afraid many may be asking. I am grateful for the wisdom used in signing "anonymously". This allows me not to harbor hard feelings towards you. Now I am able to look at your post without passing judgement on anyone, and just pray that you will return to our journal again. I pray that you have not been hurt by the response the comments received. I pray that you too love my Ashley enough to continue praying for God's will in her life. I pray that you will not judge me too harshly for wanting my daughter to live. I pray that you will be able to see that my heart is honest and that my "ramblings" are unrehearsed. I pray that somehow you will truly see me and know that I am doing the best that I can to be the mom that all 3 of my children deserve. I am not angry. I am searching for His will, and I am praying that if it could be His will for my daughter to grow up that He will hear my plea and grant my hearts desire. How I wish I could share with you ALL of my Ashley's story. If only you knew of ALL the wonderful things that only GOD Himself could orchestrate in her life. I think you would understand me a little more and that you would see that although I am afraid of what His perfect will might hold for my daughter it is what I must seek from Him. I choose to believe that the words posted early this morning were meant for good and not evil. I choose to believe that they came from a sincere heart who had no intention of causing me pain.

Again God has been good to my family. He has given us another day with our sweet girl, and He continues to teach me lessons through her life. I am not perfect. I am not super mom. I am not really anything other than saved by His grace. I am a believer. I am a wife. I am a mother, and I don't know how to be anything else. Thank you for your encouraging words. Thank you for wanting to protect us from hurtful words. Thank you for loving Ashley, and thank you for praying us through another tough one. I truly, truly love and appreciate each one who willingly comes to share Ashley's Story.

Update

I just stood by helplessly and watched as God once again spared my daughters life. Her blood pressure dropped dangerously low and she was purple for a time. I think it was a combination of infection, sedation drugs, dehydration and hyperventilation that brought her so close to death again. As I found myself watching what unfolds and praying for my Gherkin I also found myself questioning my prayers. How miserable is it that I am second guessing if I should be asking God to spare my child. What a sinking feeling that I had as I was watching my child struggle and at the same questioning if I have a right to ask God to let me keep her. Please pray for Trish and I that we can do the best we can do. We did not get a manual with Ash that told us how to handle the emotions of a sick child. God did give me a manual on how to pray and up until this morning I thought I was doing a pretty good job of it. I do pray for God's will and I also pray that Ashley remaining a part of our family is part of His will.

For those of you who are commenting. Thank You!! It is really helping me to see the positive uplifting words of so many as I struggle today. Please keep them coming.

DAVE

Praying God's Will

Ashley is back on the vent this morning to help her rest while they send blood work out for cultures. She has some type of infection that is making her little body have to work to hard. Ash has to be immunosupressed in order to keep her from rejecting her new organs and unfortunately this makes her susceptible to every bug that comes along. I am amazed at how my prayer was for Ash to be off the vent for Christmas and that is exactly what God gave us. She is back on the vent today but yesterday was a wonderful day where each one of us got to see Ash and play with her and she got to see and play with each one who came her to visit her. I found the following comment posted at Ashley's Story today and I want to address it.

Anonymous said...

As I have read this site now for many weeks I often wonder if you, the parents of Ashley pray 'the Lord's will'....Ashley has so many struggles and seems to continue slipping away only to be brought back...how very painful this must be for her as well as her family...allie and your son no doubt need some normalcy to return in their lives...I am not saying you should give up or walk away from Ashley only to rethink your prayer life and be sure this is the Lord's will.

8:58 AM 12/26/2006

God has used Ashley and her struggles to teach us more about Him then we have would have ever imagined. Ashley's life has brought Trish and I, Blake and Allie, and countless others closer to Him and has improved countless family relationships. The hardest thing I have ever done in my life was to pray to God that His will be done in Ashley's life. I prayed that if it was His will for us to be the only people who ever loved her before she died that we could do that for her. I prayed this prayer not with just words but with an absolute complete humbleness of who God is and who I am. I was at a place where I wanted God's will to be done in spite of what I wanted as a father. I don't know if Anonymous has ever had to face the loss of a child, I certainly hope not. It is not something I would never wish on anyone. We don't take care of Ash because we have to, we do it because she is our daughter and we love her. How difficult it is for us to read the words we should "rethink your prayer life" when we and hundreds of others on our behalf are constantly asking for God's will to be done in our and Ashley's life. A brief search of Ashley's blog has returned at least 15 pages of posts where we are seeking "God's will." It hurt us beyond measure that someone would take the time to criticize our walk with God. We know without any doubt that God called us to be Ashley's parents. We have sought God's will for 13 years before He called us to adopt Ashley. We could not walk away from her because she didn't have a body like yours and mine. Should we just quit because it is hard? Does she not deserve to live or have parents that will take care of her because she wasn't born healthy? If Ashley, Blake or Allie or even a complete stranger fell in water and was drowning should I walk by and say it was God's will for them to fall in so I should not intervene or should I jump in and try to save them from drowning? I would jump in. Does that mean I didn't seek God's will? I know that if it was God's will for them to drown I could not save them despite my best effort. The God I serve did not give up on us. He knows that we are drowning in sin and yet He loved us enough to make a way for us to be with Him. He knows the pain of losing a child. He chose it. He did not walk on by and give up on us and allow us the drown in our sin.

Most of you who know Ashley know her through a website. You know her through pictures and through the writings of her family. You have not seen her day by day. You have not seen her laugh. You have not seen her play. You have not seen the spirit God has given her. You don't know her history or where she came from. You don't know she is a fighter with a will to survive. You have not heard the words of the doctors telling us how strong she is. You have not seen the funny faces she makes. You have not seen her wave to us. You have not seen her clap her hands. You have not seen her play with her toys. You have not seen her funny quirks. You have not seen her progress and learn new things. You were not there when God brought her through her birth against the odds. You were not there when God kept her alive through Necrotising Entercolitis. You were not there when God brought her through the surgery when her bowel was removed. You were not there when the doctor told us in astonishment that he had never seen a baby in such a poor condition survive. God did that. You were not there when God carried her through the reanastomosis surgery. You were not there when God led us to a decision on which transplant center to list her for organs. The very transplant center where He knew He would provide the organs she needed to live. You were not there when God brought her through her transplant surgery. You are not here now living the daily ups and downs that is our and Ashley's life. For those of you who are praying for Ashley and our family we are forever grateful. You have not been there to see God spare Ashley's life on at least 8 different occasions. I have been there. Ashley is not a vegtable being kept alive by man and the machines he has invented. She is a little girl with a less than perfect body. A little girl with less than perfect parents. A little girl who takes all that she goes through with such a wonderful spirit. She rarely even cries. She loves life. She is so strong. I have witnessed God's miracles in my daughters life.

I have zero power to spare Ashley's life. Trish has zero power to spare Ashley her life. The doctors and nurses have zero power to spare Ashley's life. None of us do. We are very aware of this. Over the course of the past year and half we have watched at least 10 children die in these hospitals. None of us had any power to spare the lives of those children. We grieved the loss of each. Their parents and the doctors where completely powerless to stop it. God is the only one. If it is God's will then Ashley will not survive. We know that.

My intention was not to upset or offend anyone who reads Ashley's Story. I apologize if I have. I am Ashley's father and I am Trish's husband. I don't want to see either one of them hurt. I will be praying for anonymous today.

I will continue to pray God's perfect will in Ashley's life and for our family. I continue to pray for each of you who are part of Ashley's Story.

DAVE

Growing Weary

I almost hesitate to sit and type this morning and ask you to once again please begin to pray for our Ashley. This morning around 5:15 things began to change. Ashley has spiked a temperature of over 103 and her heart rate is climbing. Last time we looked it was 210. They have sent cultures from every place possible and they continue running tests looking for something. They will be re-wiring both of her lines at some point this morning, and this breaks my heart for the pain and distress it will cause her. I realize that many of you may be growing weary as you walk along this path with us, but please let me assure you that she is worth it. She is amazing and wonderful and beautiful, and I know in the deepest part of me that He created her to do big things in this world. So today I humbly come to you again and request prayer for my daughter. Things aren't looking too good and she is getting sick again. She is fragile and a good day can turn into a very bad day in just a matter of minutes. We will update with information as they gather it. Take care and God Bless. Trish

Merry Christmas

Well the day is now done, and we have enjoyed another Christmas with our sweet Ashley Kate. God has been so very gracious to us, and He has allowed us to see her smile a few times, watch her play for a moment or two, and place kisses on her sweet face. She spent the majority of this Christmas day resting and dreaming. We did not open her gifts today and she did not feel well enough to peek into her stocking along with Blake and Allie, but we expect her to be feeling better and better each day so we plan on doing those things with her later this week. She did not wear her Chrismas dress, instead she stayed in her diaper with her new fuzzy bunny slippers that Grandma brought to her. We took the sweetest pictures of her in them, and I promise that once I locate the right cord we will post several new photos and video.

I believe that Blake and Allie had a wonderful Christmas, and I would like to say thank you to so many of you who thought of special things to send their way. Your gifts and your thoughtfullness during this busy season were very appreciated. So many of you sent amazing things to me, and I was blessed by each of your gifts. Thank you for the time and thought that went in to each of them. We spent the day playing games, building toys, doing crafts, and peeking in on our little "gherkin" . We took turns sitting next to her bed and watching her sleep and play. My heart is so very blessed and tears fill my eyes when I think back to the days that have led us to the place that we are in tonight. God is good, and He has given us the most amazing gifts. I can't help but think of our precious donor family on this Christmas night, and I hurt for the longing they must feel in their hearts. I pray that they were given peace and comfort today and everyday. Their gift to us allowed us to spend this special day with a tiny princess who we love more than anything, and I will forever be grateful to them.

To my family who we missed so very much today I would like to say Merry Christmas. We love you and as I spoke to you today and overheard the noises in the back ground how I longed to be there with you. I so missed tip toeing through the children asleep on the floor and around the tree while stuffing their stockings with things that would make their eyes sparkle. The laughter I overheard around the table as you "whipped" each other in a round of Sequence and Dominoes made my heart smile. I look forward to bringing our sweet baby next year and allowing her to run the show. Although we were miles apart you were all so very close to our hearts. We love you all and we pray your holiday was made precious by the One who gave us all so very much to celebrate.

Good night to each family who took the time to check on our Ashley today. We love you and we treasure your friendships. We wish a Merry Christmas. May He bless you all. Trish

Christmas Chimichonga

Ashley is looking really good today. Just as we were about to head down to the cafeteria Ashley woke up and was ready to play. She had both eyes wide open and immediately spotted her balloon. We had about 20 minutes with her before she got the sleepy eyes and was ready to go back to sleep. She is still having trouble with her high blood pressure today. They are giving her several different meds in higher and higher doses and she just keeps on with the high BP. They told us they were approaching the adult doses with some of the meds. She is having withdrawals from some of the meds she had while on the vent so she has the "shakes." Aside from these things she looks great. She is slowly making progress. I am so thankful for this after the day we had last Tuesday.

So we got her back to sleep and went down to the cafeteria. I was expecting a Christmas ham or turkey. But instead we got......Christmas Chimichongas! What are they thinking? Allie took a bite and she liked them but they were "cold & hard" and they tasted weird. We ate our chimichongas and were just happy that the cafeteria was open for us to eat today.

Merry Christmas to all......

DAVE

Christmas "Angel"

Tonight we have been blessed by an "angel". Ashley is one of the sweetest things I have ever seen. She spent most of the day resting, but tonight after her bath I slipped her into her Christmas p.j.'s and she looked so sweet she must be an "angel". How precious she is. She may not really be an angel, but she is definitely a miracle.

Christmas has always been such a magical time for me. I love everything about the season. This year has been difficult, but tonight I am feeling the "magic". I am so very thankful to have been given another holiday with my sweet Ashley Kate. She is amazing, and she is the most incredible gift I have ever received.

We are preparing to leave and go to our apartment with Blake and Allie. I hate leaving Ashley here, but we have decided we would rather open gifts there tonight so we can wake up early in the morning and bring our stockings to the hospital to be with Ashley. The kids are looking forward to sitting with her on her bed and seeing what surprises are tucked inside of their stockings. (Don't tell Ash but we have packed two jumbo size tic tac boxes deep inside of hers. She is going to love it!) Allison thinks it just won't feel right opening gifts at "home" tonight without Ashley, but I am hoping she will enjoy the things she finds inside of her packages. I know we will feel an emptiness without her, but I am going to do my best to make it as special and magical for them as I can.

I pray you are all enjoying precious holiday moments with your loved ones tonight and that you are making memories to last a lifetime. We love you all and we wish you the merriest of Christmas'. Enjoy the magic.

Thanking Him

We are so happy to post that she is not on the ventilator and she is breathing on her own with only 1 liter of oxygen. Immediately after the tube was pulled she reached for the wet wash cloth I had been using to wipe her little face and began trying to get a drink from it. She is so smart! She knew I had put water on it and she was thirsty. We quickly began to wet her "pink" sticks so that she could have drink. I wish you could have seen the smile in Blake and Allison's eyes. (they were wearing masks so you couldn't see the smile on their faces) It really will be a wonderful Christmas for them. They are so happy to see her smile without the tube in her throat. All of the excitement has been very exhausting for her so she is now napping.

My heart is full of gratitude. The smile has yet to leave my face. He is good and He blesses us each day with so much more than we deserve. We have Ashley and we have Allie and we have Blake and that is all we need to celebrate the birth of the One who gave so very much. God is good and we are thanking Him for our "Christmas miracle".

Waiting for our Christmas Miracle

Today is the day. Its Christmas Eve and we are waiting on Ashley to wake up so that the kids might actually see their "Christmas Miracle". A week ago I would have never even thought it possible to have Ashley breathing on her own by Christmas, but that is exactly what God is good at. Doing the impossible. Things that we could not do, things that only He can make happen. She looks so beautiful this morning! Her skin color is amazing and her little cheeks are rosy. Rosy enough to be Santa's little helper.

Her blood pressure is still a little high, but it is under control with the IV drip. They will be attempting to wean it back as they wean the steroid dose. They have written for an incredibly high dose of oral blood pressure med in hopes that it will help regulate the problem. I am praying that she will tolerate the changes and be able to become stronger and stronger.

Allie has been busy wrapping gifts for all the children on the floor. She and Blake will spend the morning delivering a little Christmas Cheer to the other patients. They are so excited. I really appreciate our parents for making this possible. There is nothing that quite compares to a giving heart. I would rather see the smile on their faces from giving to someone rather than a smile on their faces from receiving. We are anxiously awaiting the delivery time.

This morning I am counting my blessings for being in this place that we are. We are all together and that makes this holiday more than special. Blake and Allison are more excited about being with Ashley than they are about anything they see under the tree, and that makes a mom's heart smile. We are truly, truly blessed.

I am going to go see how close we are now to removing Ash's breathing tube. I will update you all after she is awake and breathing on her own. Thank you for your prayers and for all the amazing things you do each day for my family. We wish you all a Merry Christmas. Trish

Good night and God Bless

Ashley has settled in for the night and we are now going to go to bed. After this day I feel as though I could sleep for years. She is holding her pressure in the 120's and everyone is comfortable with this for the night. They continue to wean her sedation meds in anticipation of taking her off of the ventilator tomorrow morning. It looks as though He may give Blake and Allie the "new" Christmas miracle they have been praying for. They would love for Ashley to be awake on Christmas morning. I am continuing to pray for this to happen.

In the midst of all of the concern and stress, we have tried so very hard to make today a good day for Blake and Allie. We have taken turns spending time in the family waiting room with them. I am so thankful it is right across the hall from Ashley's room. We all finished stringing our popcorn garlands tonight and we are ready to finish off our tree. Allie and I busied ourselves creating the most beautiful Gingerbread House I have ever seen. One of the Sunday School classes at Mobberly Baptist Church sent it up for us today. Thank you so very much. It was a good distraction for the children and a precious memory I will treasure forever. She even made a gumdrop snowman in the yard of our house complete with a broom and a hat! I can't wait to post the pictures for you to see. We enjoyed wonderful snacks all day courtesy of the care package sent to us by the 4th-6th grade GA class from East Jena Baptist Church in Jena, Louisiana. Thank you so much for sending it!

Today has been very difficult for us, but He has still been here. I don't know where we would be if we did not have our faith. It is my belief in who He is that helps me make it to the end of each day. I know that He has a plan for my daughter and I can see that He continues to work in her life. I do not understand why this plan must include days like today, but I am confident that He will finish the work He has started in Ashley's life. There are times when I struggle to find Him through the panic and the tears, but I have never failed to eventually see Him. He is here and He is taking care of her and I am thankful to know how very much He loves her.

Thank you for loving her. Thank you for loving us. Thank you for loving Him. When we get down to it this is all that really matters. My prayer for you is that you will be able to see and feel the love that the Father has for all of us. He loved us so much that He willingly sent His only Son. He came as a baby. He came for me. He came for you. He came for Ashley. He came to die so that we might actually live. This is love and I have never known a love like this before. May you find what you seek this Christmas and may you find His love. Good night and God Bless. Trish

God is Working

Thank you for your faithfullness to us during this very busy holiday weekend. How I wish I were at home with my children celebrating the wonderfullness of His birth, but that is not His plan for us this year. Even though we are in a tough place this Christmas He is still here, and He is working.

They have started a constant i.v. drip of a different type of blood pressure medicine. I was sitting in my chair next to her bed, head in my hands, praying that He would please intervene if it were in His will. I was asking Him to please take His hands, the very hands that created my Ashley, and push her blood pressure down. I wanted Him to please make the numbers go down and cause this medicine to begin to work. After a while I noticed that the alarms had gotten quiet and when I looked up her systolic pressure had dropped from 165 to 130. He is working! He is hearing our prayers. The doctor came in to tell me he too had noticed the drop and that we were still not in a "safe" place, but it is certainly a better place. My heart is feeling so much lighter just knowing that it is capable of dropping. The concern with this medicine is that it must be monitored so that we do not cause her to "bottom out". That would place in a more dangerous place. The ups and downs are hard to understand and hard to keep up with, but I wanted you all to know that He is listening. He is working in her life. He is hearing our crys, your crys, and I love you all so much for loving my Ashley enough to take time away from your families to pray for mine. I am thankful for all of you and I am wishing each of you a Merry Christmas.

Still Rising

Ashley's blood pressures are now 160's over 90's. It is dangerously high. We are now beginning our 5th med of the day. She has responded to nothing. They are going to start a drip of something I can't even pronounce. I have lost track of what she has and hasn't had. PLEASE PRAY for her tonight that she might stablize.

Balancing Acts

There are days when I definitely feel as though my entire life is one big "balancing act". Today is one of those days! We are trying to find a balance between showing enough Christmas spirit and joy for the older kids and the concern that they can obviously see in our eyes as we come in and out of Ashley's room. How are we supposed to pull this one off? I have no idea. I am a mess on the inside and my mind races with concerns and fears for my sweet Ashley. At the same time, I put a smile on my face when Blake and Allie approach and fake an excitement about the holiday that is to arrive regardless of the situation I find us in. In no way do I want them to miss out on all that Christmas day has to offer. We have basically explained to them that Ashley has started a new medication today and that in order for it to work we must stay out of her room, keep things very dark and very quiet, and not touch her. I sit in silence and watch the monintors for hours. The numbers are red. The numbers are flashing. The numbers are too high. The numbers alarm.

At this time we have maxed out the dose of blood pressure medicine that should be allowed for a 24 hour period. The medicine they used yesterday is not an option because it shot her heart rate over 200. The medicine they would like to try is not really an option because it is a "beta blocker" and today her heart rate is too low to risk it dropping in response. They assure me there are several more things we can try. The only problem is that with every option there are side effects and risks and we have no way of knowing how Ashley's body will respond to them. We think that the introduction of a new steroid that was used to wean Ashley off of the dopemine 2 days ago is the reason for her increase in pressure. The only problem is that her body desperately needs this steroid to try and enhance an attack on what has caused her to become so ill. The steroid can not be stopped. It must be weaned back slowly. While we wait for this weaning her blood pressures continue to rise. The doctors are trying to "balance" the risks of each drug with the possible benefit. Everyone has a theory about the cause of Ashley's repeated illness'. They have now determined that her adrenal system is "shot" because of the high doses of anti-rejection medicine that she is on to keep her from rejecting her transplanted organs. Because of the lack of adrenal response she needs to be on a dose of this hydrocortisone steroid, but it is causing her dangerous increase in blood pressures. What do you do? I don't know and I am afraid that nobody really does know. The good news is that they are still planning on removing the breathing tube and allowing Ashley to wake up in the morning. This is the joy we are finding in our situation today. She is strong enough to breathe on her own now, and for this we are more than thankful.

Trying to balance the newly gained medical knowledge( that I wish I had never needed to learn) with my faith in God and His ability to change her situation is another area that I am struggling with. Honestly Dave is much, much better at this than I am. When you look over at him you might see one or two tears fall down his cheeks. When you look at me you see the tears falling freely and uncontrollably. He is concerned, but he successfully gives it to the Lord and doesn't continue worrying about it. I am concerned to the point that my prayers are a garbled mess of pleas and requests that make no sense, and I am constantly picking it up again and again and again. Dave is a source of strength, and I am exhausted because of my weakness.

On a personal note I would like to say Happy Birthday to this amazing man I am blessed to call my husband. Thank you for you strength, your integrity, your love for God, your silly humor, your leadership, and your friendship. Thank you for giving me Blake and Allison, and thank you for choosing our Ashley. We are all blessed to have you in our lives, and I admire who you are. I love you, and I hope that despite the trials we find ourselves facing today with your sweet baby girl that you have a very happy birthday. God has blessed us, and I wouldn't want to travel this path with anyone else. Trish

URGENT PRAYER REQUEST

We ask that you would please pray for Ashley today. Her blood pressure is dangerously high. It was to high last night and when we came in this morning it had gone above some of the numbers they had told us yesterday would be dangerous. They tell us the main risk for these BP numbers is stroke.

We ask for your prayers and ask that you would spread the word to those you know who follow Ashley's Story.

DAVE

Green, Red, White & Blue

Ashley's monitor looks like a patriotic Christmas Tree. It is green on the top line with red, white & blue underneath. We have been watching Ash's Christmas tree closely tonight as Ash has had an adverse reaction to one of the meds. The reaction has caused the green (heart rate) to go over 200 and the red (blood pressure) to be in the 130's over 80's. Both of these are way to high. One good thing is that the white and the blue are where they are supposed to be. Awhile ago Blake, Allie, Grandma and I (Dad) were playing a card game where the object was to have the lowest score. Trish came in and was sharing some of the Christmas tree numbers with me and Allie looked up and asked her Mom, "Are the numbers supposed to be high or low?" We just chuckled and told her it depends on which number. They don't understand all the details on the same level we do, but I know they love Ash just as we do. We (the four of us) were in the car going to meet one of the nurses who had stored some things for us in her apartment. While driving down the road Trish asked the kids "If you guys could have anything in the world that you want for Christmas what would it be?" Both of them answered at the same time that they would like to have Ash out of the hospital. Trish said we can't do that what else would you want. Blake replied he wanted a form. "What???" we asked. The he told us he wanted a release form that would say Ash was released from the hospital. We agreed how wonderful that would be then asked the question another way. "If you got $100 for Christmas what would you do with it?" Blake said "I would donate it." Allie replied "I would donate to Ashley's fund and pay my tithe and offerings." We told them what wonderful answers they had given and how proud we are to be their parents. I can't even describe to you how blessed we are this Christmas season. We get to be together and we get to celebrate the birth of Jesus. Our Savior. For our family Christmas came early this year. We received the greatest gift of our lives on Sept 26th. This is the day that our Gherkin received her new organs given to her by a family who at a time of terrible grief decided to help save the life of another child. I pray that one day we will be able to have communication with our donor family. I pray that we will get to personally thank them for the gift they gave to our Ashley.

Tonight I want to thank each one of you for each prayer that you pray for Ashley. We know that she is still here because of the faithfulness of all who are praying on her behalf. Tonight I ask that you would pray that the numbers on Ashley's Christmas tree would find their way into the ranges they belong.

Thank you for being a part of Ashley's Story.

DAVE

Things are Rising

We just came into Ashley's room from lunch and found "them" outside in the hall discussing her rising blood pressures and heart rate. Anytime I come around the corner and see them outside talking I know things are not good. When I saw the monitor and saw that her heart rate was above 190 mine began to immediately beat faster. Something is causing this rise, but what is it? They had just administered a new blood pressure med trying to lower it. I hope this is the cause, but they don't seem to think it is. Her fluid status is all over the place and they are desperately trying to get the fluid to shift back into her vessels. They turned off the paralytic this morning and she is now fidgeting and beginning to jerk around. Obviously I am concerned and when things like this begin to happen I get so nervous. I am having a difficult time juggling my emotions and trying to protect the kids from realizing that we are concerned. I am feeling very torn at this moment. The good news is that she is making progress on the vent and if tomorrow's x-ray looks good then they plan on weaning her off of the ventilator which means she could actually be awake and breathing on her own by Christmas. What an answer to prayer this would be for all of us. Blake and Allison are fervently praying this prayer. At every meal, at bed time, when they visit with her in her room they are asking God to please let Ashley be awake so that she will know they came to spend Christmas with her. At one point this week I would have never thought this possible, but now it is looking like He may answer their prayer with the answer they have been seeking. Please join us in praying that His will be done and that if it is safe for Ash to be awake that she will be.

Let me take a moment to say thank you from the bottom of my heart to each of you who have been so very generous to me and my family. It seems that almost daily something arrives for the children to help make this a memorable holiday season. I am humbled by your willingness to give and by your generosity. God has used His body of believers to touch my family and we will never be the same. If only I could thank you appropriately and help you to understand how very much each of your prayers, gifts, thoughtfullness, kindness, and support means to David and I. There are no words to describe the debt of gratitude I feel towards all of you. Please accept my sincerest THANK YOU and know how very much I love you for loving Him enough to love my Ashley, my Allie, and my Blake. You are helping to make this a very Merry Christmas for us all. The gift I appreciate the most is knowing how very much you all care.

Allie and I stayed up until 1:30 this morning stringing popcorn and cranberry garlands. We so enjoyed sitting together and laughing and talking late into the night. She is beautiful and precious and so very grown up. Blake was too tired and decided to go to bed early. This morning when he woke and realized there was still more to be done tonight I could see the smile in his eyes. David and I have been trying to get the children to give us some idea of what they might like to have for Christmas. After trying for such a long time, I finally said "it is o.k. to want something and we are asking you what you would like to have for yourselves." Blake finally ansered me and said, "Mom, what can I say? We are not greedy. You have raised us right!" Dave and I were so tickled by this statement and touched at the same time. Unfortunately we find ourselves in the same dilemma hoping we have chosen things they will like.

I am looking forward to the "grandmas" arriving this evening. I find myself feeling very torn if I leave Ashley in her room to spend time with the kids, or if I leave the kids in the waiting room and spend time with Ashley. I think I will be more comfortable when I know that we will have someone here to sit with Ash while we sneek away to a movie, or to dinner or something. Thank you all for loving us and for visiting Ashley's story today. We will be posting new pictures and video of our sweet girl just as soon as I can find where I have placed the appropriate cords during my last move. Thank for your patience. Take care and God Bless.

Bath Time

Aside from the CF test we already told you about today was pretty slow and uneventful. Things seem to be moving in the right direction for Ash. Allison actually walked in and overhead a doctor talking with a nurse saying that they may try to wake Ash up and get her off the vent in the next day or two. This would be a wonderful thing for us. My prayer has been that she will be awake and interacting with us before Christmas. One of my favorite things is watching Blake and Allie play with Ash. Ashley knows who they are and just has the prettiest smiles and funniest faces while playing with her brother and sister. I look forward to seeing that while we are here.

Thank you for all your prayers for our Gherkin. I need to run, the nurse and I are going to give her a bath.

Goodnight,

DAVE

Its NEGATIVE!!!

We have just been told that the results of Ashley's Cystic Fibrosis tests are negative! Even though we were given the same result before coming to Omaha, just the idea that they thought she might have it made me so nervous. I am thanking God for allowing us to not have this disease.

Today has been a tough one in Ashley's room. They still have not managed to get her blood pressure down to the desired levels. We are having to be extremely quiet when we are in with her. We don't talk, or turn on the T.V, or make any noise. She is responding to the sounds of our voices by showing an elevated heart rate and blood pressure. It has been very difficult for me not to talk to her all day. I usually spend my days kissing her head and her fingers, singing her songs, and telling her how much she is loved. Today just the sounds of our voices are causing her to become more stressed. She is still paralyzed and not able to move or open her eyes. It makes me so sad to know that she is trapped inside of her own body and she is not able to communicate to us what she needs. Hopefully they will be able to remove the paralytic in just a couple more days. She has developed a fairly large air leak in her breathing tube. They are keeping a close eye on it and we are praying it does not have to be removed and replaced. The trauma caused to her throat when she has to be intubated makes me nervous. The blade usually causes her to bleed for a couple of days when they suction her.

Our Ashley is so beautiful. I know it is hard to see past all of the trauma that the swelling has caused, but when I look at her I still see beauty. She is still my sweet Ashley even though you can't recognize her. She is snuggled into her bed with her gray kitty cat holding the ventilator tubing off of her chest, and she is covered up with some of her favorite pink blankets. Her pink CD player is softly playing Silent Night in the background. When I sit next to her I see the magnificent work of the Creator, and I am so humbled to be allowed to love this little one.

Thank you all for praying for our Ashley today. I know this is a very busy season for everyone and to know that you pause during your day to pray for our family blesses me so very much. Although we are so far away from everyone, we are excited to know that the joy of His birth, and the excitement of His season will keep us close to you all in our hearts. Take care and Merry Christmas! Trish

"Where's the Snow?"

You guys been watching the weather reports. 2-3 feet of snow in CO and western NE.

Back in the summer we trying to decide on which transplant center we should take Ashley to. Our choices where Miami and Omaha. For a variety of reasons we ultimately chose to list Ashley for organs in Omaha. I think God truly lead us to this decision. The average wait time for organs in Miami was 3 months and in Omaha about 15 months. Ashley did not have 15 months left with her old liver. But despite this small problem OK, this HUGE problem we were led to choose to list her in Omaha. God worked a miracle and the call to come for transplant came just 3 weeks after we came home from Ash's transplant evaluation. Even as I type this today I still am amazed at how fast God provided organs for Ash.

One thing I remember about our time this summer at the transplant evaluation here in Omaha was them telling us that if we were in Omaha this winter we would get to see lots of snow. Now we are here and snow is all over CO and NE and there is not a lick of snow here. It's not even cold. Almost 50 today. I was griping about the lack of snow this morning. I was telling the nurses that I came to Omaha and it is winter and I am ready for some snow. Remember the "WHERE'S THE BEEF" lady? Well I ask "WHERE'S THE SNOW?"

I was telling Ash's nurses and doctors that if we had chosen Miami I could be wearing my flip flops and headed to the beach right now. I know they would have delivered.

I left the hospital to go get some lunch a while ago and since I have been so grumpy at the lack of snow I decided to lift my spirits by singing Christmas songs in the car. Now I know and all of you know I can't sing, but I was getting in the mood. I altered some of the words to fit our situation so here goes.

Pretend you are singing along to (Let is Snow)

(Chorus)
Now the weather outside is warm,

They told us it would snow,

But they told us a bunch of fibs,

Where's the Snow? Where's the Snow? Where's the Snow?



OH- We finally came to Omaha,

And its winter time,

So since we came all this way,

Let it snow all day, all day, all day!!

Repeat Chorus 2X


Sing this one to (Santa Clause is coming to town)

You better watch out, you better not pout,
I'm gonna cry and I'm telling you why,
ther'er is no SNOW. :(

They told us to come, they told us it would snow,
so we came to Omaha, and wher'ers the white glow? :(

Oh they better watch out, the better look back,
I might just jump em' and attack,
Oh, where'er is our snow?

OK, now you know, not only can I not sing, but I also can't write or compose music. God gave me some talents I know, but music is most certainly not one of them.

Have a wonderful day,

DAVE