She stole our Hearts

I'm sure you can see why. From the very moment we knew she had been born she stole our hearts. Her daddy is so in love with her. Her mommy is too. Her eyes just sparkle with life, with joy, with personality. Those cheeks beg to be kissed and they are at least a hundred times a day. That smile. It brings joy to my heart. Such joy. These tiny hands are the ones she has learned to hug us with and the feeling that comes over me each time she does is more than I can share. I love her so very much. Our hearts and our home are full.

I would do it all a thousand times over for moments like the one captured here. I would cry the tears, feel the hurts,kiss the boo boos, and long for home just to see this smile. She is happy and our prayers have been answered. Thank you Father for who she is, for what she gives, and for all you have done.

She made it!

We couldn't be happier! Our little pickle has finally matured into a mighty dill. She made it! She is now on the charts(at the bottom of the 10th percentile, but she now has a dot). Our little 2lb12oz baby gherkin has grown into a 25lb giant pickle. We didn't think this day would ever come.

We had our appointment in Shreveport this morning with Ashley's new doctors. It went so well! Dave and I left smiling ear to ear and we talked about how pleased we were the whole way home. The entire team was fabulous and so very encouraging and kind. The doctor had good, good things to say about Ashley's development and after a tough couple of weeks of therapy it was SO encouraging. "Delayed? She is definitely not what I would consider delayed. I just watched her with that book. Under stimulated? Yes, because of the amount of drugs she is on, but don't think of her as delayed. She will get there and her little mind is going to be fine." I can't tell you HOW GOOD it felt to hear a professional say that about Ashley Kate. We are so encouraged and uplifted. To know that somebody else who has never met our Ashley can see the potential that her daddy, her mommy, and Ms. Sue(her physical therapist) can see is wonderful. He had nothing negative to say about her.

We are also beginning a new schedule for her feedings. Gaining 3lbs in 6 weeks is a little too much. Don't get me wrong, she is definitely not fat. We just don't need her growing at that rate for too long. We are going to begin the slow process of cutting her time on the pump and allowing her to feel hungry. We are adding an appetite stimulant and cutting back on the calories she receives from her formula so that her feeding therapy might go a little smoother. This week she will go from 24 hours on the pump down to 20. Then every two weeks we will cut back until she is down to 12 hours again(just like she was before the rejection). Tonight she ate her first baby foods since our return home and we are so pleased! I think one of my favorite quotes from her doctor today was this, "Why did we give her a transplant? We did it so she could eat and grow. Right? We didn't put her through all of this so she could be fed by a tube her whole life did we?" Dave and whole heartedly agree and we are thrilled to be on the same page with him. Our long term goals are to have Ashley Kate eating by mouth. Our short term goals are to rid her of the g-j tube because the doctor confirmed our thoughts that the j portion could be causing her vomiting. It won't happen right away, but it is definitely on the list. We would like to return to the g tube and then eventually get rid of it as well.

Ash has two therapy sessions tomorrow and again on Thursday then she will finish up for the week. She loves the weekends when no one comes in to make her work. She likes to call the shots and those silly therapists just don't let her. She has done a good job so far this week and so I am hoping tomorrow will go well too.

We have been encouraged by all that took place today and I just love how the Lord knows exactly when you need a little encouraging. It couldn't have come at a better time. Good night guys. Trish

Worship?

Over the past 2 years I could probably count the number of times I've been in the church for worship on one hand. It seems so very foreign to me. I was raised in the church. The "every time the doors were open" kind of raising. We NEVER missed a service. That's all I knew.

Dave and I are obviously believers, and as believers we try to raise our children to know the truth of God's word as well. We had been actively involved in children's ministry from very early on in Blake's life. We believed we always would be involved in their classes and activities at the church on some level. Then a little over two years ago Ashley Kate was born and life changed.

I spent the first 6 months of Ash's life in Dallas while she was in NICU. The next 8 months we spent at home, but she was so tiny and fragile that we kept her home. Central lines, mickey buttons, feeding pumps and liver failure don't really fall within the normal Sunday morning nursery workers responsibilities. The next 6 months we lived in the PICU in Omaha. Finally in March of 2007 we moved back home, but still the "bells and whistles" that accompany Ashley Kate are a little much to expect the nursery workers to take care of. On top of all that she was actively undergoing chemotherapy and spent many of those weeks extremely nutrapenic(low blood counts making her very, very weak and susceptible to infection). Church wasn't really an option. After she completed her chemotherapy we actually took her to church and hung out in the balcony a couple of times, and then in September her small intestine went into rejection. We went back to Omaha for the next 3 months. Now that we are home I find myself sitting home with Ash each Sunday morning while Dave and the kids attend church without us. Sure we could go back to the balcony with her, BUT she's 2 now. 2 year olds aren't exactly quiet when they need to be. In fact, our 2 year old is not only noisy, but she is ornery on top of that. If we want her to play quietly on our laps I can ASSURE you this will be the time she is NOT going to. I have tried to run through different scenarios in my mind. I just can't find one that works. The nursery still isn't an option. How many 2 year olds are there that can't walk, talk, or communicate with the workers and other children? How many of them have extremely suppressed immune systems? Exposure to runny noses, coughs and sneezes is a definite "no, no" at this time. On top of those problems how in the world could we ask a nursery worker to care for her ostomy? It's not really that attractive and to those who aren't used to seeing a loop of intestine on the outside of a stomach it can be a little overwhelming. Vomiting? I don't think the other parents would appreciate walking in to pick up or drop off their child and witnessing one of Ash's vomiting episodes. She has them daily and has had for over 4 months. It's not contagious, but it is alarming to see.

I don't believe we will always find ourselves in this place. It just seems that for now this is the place we are. So what do I do about worship? I think I have learned that worship, at least for me, isn't really about the "place" of worship but its more about the "state" of worship. Since I don't attend church at this time I have tried to keep a heart of worship. Seeking to keep my heart in the right "state" so that I might worship each and every day as opposed to only on Sundays. I have learned to pray in a very different way. I find myself talking to God all throughout the day like He was really standing next to me in the kitchen or riding in the passenger seat while I go to carpool. It hasn't been easy. There are times when I feel very distant and wonder how to find my way back. Then there are times when I have felt closer to the Father than ever before. Its very different than I have ever really known. I'm not really "fed" because I'm not sitting under the preaching of His word, but I do think I'm growing. I have no idea if this is right or wrong, but its the best we can do for now so I am just trusting that its going to be o.k.

Sunday's are still a little weird for me. Even after 2+ years of not attending church it seems odd to be sitting at home.

Ash continues to struggle with this silly cold. Other than the coughing, sneezing, overloading of mucus, and headaches she is doing really well. She is learning new things each day and loves to sit and play, play, play. She is happy and full of joy as long her therapists are not around. We spent some time playing in the back yard today and as always she loved being outdoors. Her little mouth couldn't stop grinning. She clapped and clapped for Allie and I as we beat the pants off of Dave and Blake in a little game of 2 on 2(that's the story I 'm sticking to, just don't ask the guys who really won). It was a good day and I find myself ready to lay down and thank the Father for all He allowed us to enjoy on this day of worship. Life is really, really good and we are so blessed.

There tiny...

... and warm. They just reached out to touch me. I can feel her fingers. So fragile and small, but yet they have a way of letting me know how much she loves me, trusts me, and needs me. Its late. Very, very late for such a tiny pickle. Most pickles are sleeping at this hour, but mine...she has different plans for us tonight. In the dark her little hands find my face. She wants to play. I can't see the smile on her face, but I knows its there. I can feel it by the way she is reaching out for me. Her daddy has fallen asleep long before now. She gave up on him. His snoring makes her giggle with glee. She claps when he turns over. She thinks he is going to play, but I know better. He's not going to give in to her tonight. Its just us girls. Up for the night.

I love her hands. I love the way they show us what her little heart is feeling. When she is happy, she uses them to clap. When she is inquisitive, she uses them to figure things out. New toys, new books, new games. When she is sleepy, she uses them to rub those amazing eyes. When she is sad, she uses them to reach up for us. I love her hands, but I love them most when she has snuggled into my shoulder and she reaches out to me and begins to pat me with them as she is falling asleep.

As I type I am looking at those little hands that I love so very much. She has drifted off to sleep and they lay on her pillow folded so beautifully together. If I allow her to stay here in my bed I will surely be wakened in the morning by the tap, tap, tap of tiny fingers on my cheeks.

"She's a thing knower"

That's what Dave said about Ash tonight and it made me giggle. We were getting out of the car and he went to unbuckle her seat belt. "I love that she knows things. She's a thing knower." He was referring to her ability to get her arms out of the seat belt once it is unbuckled. I love that he loves that about her. Ash does know things. She knows a lot more things then many, many professionals warned us about early on in her life. So many "possibilities" and "labels" were being thrown at us. In some areas they were right about her, but in other areas she has proved them wrong.

Ash knows lots of things and she learns more things every single day. One of the biggest perks about being the mom is that I have the opportunity to spend each moment of my day with her. I get to be home to see her figure out and learn all of those things. She really is smart. You can see her mind working as she picks up a new book or pulls out a toy. I am so thankful she has the abilities that she does have. We all know that she is delayed according to all the developmental milestones that have been set for children, but even still she has a mind that learns and expands and functions. We were facing an endless "what if" situation and really had no idea what she would be capable of. Today, we find ourselves being grateful for all the things that she does know.

Ash may always be a little behind. She may always be consider a little "slow" or delayed. Some professionals have even told us that she is handicapped in one way or another. As a parent it hurts to be told that. It hurts to know that your child is considered different or not normal, but on the other side of those feelings we feel blessed to have been trusted with such an amazing little girl. God has really, really blessed us.

There are lots of changes going on in Ash's life. Our team of professionals is expanding and more and more evaluations and opinions are being given. We even meet with a new team of doctors next Tuesday who will be taking over some of Ash's care. As we introduce Ashley to all of these teams of people we have to rehearse her history over and over again. During all of that rehearsing I find myself wanting to be protective and even sometimes a little defensive, but most of all I have found myself feeling proud. Proud of this little gherkin who has come so far and who has overcome so many of the things she was never expected to overcome.

"She's a thing knower." Yes, that is exactly what she is and we are very, very proud of her.

Her bag of tricks

She's good! Her tactics are tough to go up against. She has a bag of tricks and she isn't afraid to use them. Let's discuss just what Ashley Kate has been up to this week to manipulate and avoid therapy.

1. She is just so darn cute! (well, not exactly a new tactic but one she uses well)

2. She is still little. (who wants to make a baby work hard?)

3. She cries. I mean cries hard. Big, fat, crocodile type tears. It is so, so sad.

4. She pulls her hair and pokes her eyes breaking the hearts of those who are trained and determined to teach her how to move.

5. She's happy. That is until you bring in a therapist. The minute they walk in the door she becomes very, very sad. I tell you it's heartbreaking and tough to be a part of.

6. She is stubborn. Even more so than her big sister and any of you who knew what my beautiful Allie was like as a toddler knows that this one was hard to beat. Ashley takes the cake. There is no making her do anything she doesn't want to do.

7. She gets sleepy. Instantly. I mean how I can't manage to get her to take a nap but the second her therapists sit down she can't keep her eyes open is baffling to me.

8. And her newest trick...she throws up. She makes herself throw up. I am not kidding! Tonight she pulled it with her daddy as he worked with her on the mats. What can you do? You can't work with her while she is covered in vomit. You have to stop and clean up the baby and then while you are doing it she FALLS ASLEEP! I am telling you this child is good!

So...whats a mom to do with a toddler like this? Quiting is not an option. Giving in to her nonsense will serve no purpose. Somehow, someway, we will convince her to cooperate. I just don't think its going to be easy or happen anytime soon. Every day we continue working. Its fun as long as she doesn't catch on, but the minute she does its all down hill from there. Because I love her so much I will keep waking up each day and encouraging her to learn to move. I believe in her. She'll get there. She's come too far not to. Whatever He has planned for her life will be accomplished in His time. Because I know that His timing is perfect I will learn to wait on Him. Its easy to say, but not so easy to do. We continue to grow as the pages of her story are written and some days are easier than others. We still have days when I cry because I struggle with all that she doesn't yet do, but then we have those days when all of that pales in comparison to who she is and what He is doing with her life. That stubborn streak she has is what has kept her going through some really tough times. I have to be honest and admit that I am thankful she is as stubborn as she is.

Unprepared

As a young mom I had no way of knowing just how unprepared my heart was for this job. I loved the children from the moment I knew they were on their way, but how was I to know just HOW much my heart would fall in love with them. Each day I find myself more and more in love with who each one of them are. They are amazing people and I want to spend all of my time with them. Oh, how much I love them.

I watch Ashley Kate play and my heart swells. I love this baby. I love who she is and how far she has come. I love her smiles and her giggles. I love her grumbles and growls. I love her cuddles. I love the feel of her little arms as they learn to wrap around my neck. I was so unprepared for the depth of love I would feel towards her. I could sit and watch her for hours and hours and never grow tired.

Allie is growing and changing into a young lady right before my eyes. I truly believe she is more beautiful each day. We laughed and giggled at the things she had to say. I listened to her plans for her upcoming birthday and we made decisions about the details. At one suggestion she leaned over and laid her head on my arm as I was driving and squealed, "Your the best mom ever!" My heart was unprepared for the feeling of joy that brought to me and my eyes fought back tears. We visited over dinner and then played games on the drive home. She is silly and moody. Oh, boy is she ever emotional these days as she quickly approaches ten years of age. Then as we came home I sat and watched my two girls play and play and play. God has given me so much in these two little ladies and I know He has been working to prepare my heart to raise them. Yet still, I am so unprepared.

At 12 years old Blake is one of my very closet friends. There was no way I could have prepared for this. It is a gift from the Lord. From the moment he was born he captured my heart. Such a little man. Always kind and polite. Obedient and hard working. Determined to be the best in all he does. The very best big brother to his two sisters I have ever seen. I love my son so very much. He is smart and handsome and athletic and mature far beyond his twelve years. He loves with an incredibly loyal heart. His thoughtfulness is overwhelming. He is growing into an incredible young man. He makes my heart proud.

I've thought a lot about my children today. They were out of school and spent the day at home with me and Ash. I was so blessed as I watched them play with her today. They loved on her and rocked her when she was sad. They made her laugh and giggle. They wanted to spend their day with her and my heart was unprepared for the smile that would come across it as I witnessed the three of them hanging out together. Oh, how she love Blake and Allie and how they love her.

How much more does God the Father love each of us. I can't comprehend a deeper love than the one I feel toward Blake, Al, and Ash, but still I know that there is one that exists. Just as I love to hang out and visit with my children I know He must love that too. I could listen to Blake and Allie chatter on and on for hours and never become bored. He must feel the same way about us. Just having them sit close to me and rest next to me makes my heart soar. Does His heart do the same when we take the time to just rest and be close to Him? I think it may.

Unprepared to feel the way I do. I believe thats exactly why He allows us to parent. So that we may go from not comprehending a love so deep to getting a glimpse into the depth of His love for us. Just as there is nothing I would not do for my three children, there is nothing He has not done for us.

Sometimes...

...their just going to be bigger and tougher. The opponents I mean. Thats just the way the ball bounces when your an athlete. There will be times when you come up against those teams who are flat out bigger and sometimes even tougher than you have ever faced before. I think thats what I love about playing ball. Each time you take the field or step on the court or kneel into the starting blocks you have no idea if you will end up on top when all is said and done, but you go out there anyway and give it all you've got. Some days your going to win and some days your not.

We are in the middle of basketball season in our house. This is generally what we do during those winter months when our baseball and soccer seasons takes a little break. I (as a mom, a former athlete and basketball coach) couldn't be happier. So each Saturday we head out to watch Al play in the mornings and Blake in the evenings.

Allie's team is actually being matched up against the same opponent for 9 or 10 weeks in a row. There were only enough girls to make two teams in their league this year. So although we know who were going to face each week we are still having a good time. I would like to share with you a statement that Allie shared with us 3 weeks ago as we left her first game of the season. "Mom, those giants, I mean girls, make Goliath and his family look small." I tried not to laugh too hard because I was having similar thoughts myself. When you take a team of 4th graders and match them up with a team who has a few 6th graders on it the odds definitely seemed stacked against you. I mean lets be realistic, by 6th grade many girls have "matured" as much as some adult women if you know what I mean. Anyway, we left that game being defeated by 30 points. Some days you win and some days you LOSE. Ouch! The next week our girls played a little better and we walked away with a loss of 16 points. Still, that hurt. I, like Allie, was feeling as though the giants, I mean opponents, would end up stomping us into the ground all 10 weeks. Until, today that is. On the way to the game Allie said, "I think we might win today." We tried to be supportive. "Oh, really?" "Uh- huh. Our coach taught us some plays and I think its going to work," she said. Now thats a good attitude and although I wasn't feeling as optimistic as my 9year old I sure was proud she was ready to take on those giants for another round of play. Guess who won today? Go ahead and guess. I know by this point you are thinking our giant opponents, right? WRONG. Our girls won. It was amazing! We were so proud(by the way Allie was incredible and I don't say that just because I'm her mom. She really was). 24-22. Our first win.

Then we went over to Blake's game this afternoon. To be honest, Blake plays on a pretty good team. The boys have been playing together for years and they just make it work when their out on that court together. We have gotten used to winning with this group of kids and its really exciting to watch. Oh, sure we lose every now and again, but winning sure is fun. Today we were going to be the underdogs. We had no subs to play and our 5 boys were going to be running that court the entire game. We knew it would be a tough one. Our opponents were a good team. Well coached(I'm sorry I just lost my train of thought as Dave walked into the room wearing my pink pajama pants with big polka dots on them. He looks so funny. I guess I need to catch up on some laundry! He doesn't even care that I'm laughing. We've been in "this" game a long time together). Ok, back to my point. We ran with them pretty good for most of the game. We had the lead for most of the first half. Then our boys got a little tired and a little frustrated. The other team began to slip away. Not because our boys gave up, but to be honest there are times when the other team is just a better team. In my opinion thats what happened to us today. I don't mind losing. I think it builds character. I really don't mind losing to a better team. I KNOW it makes us better. When you come up against players who are better than you are you play a better game. It just happens that way. Trust me, I played the game for 8 years and coached the next 10. You seem to kick it up a notch and take yourselves to the next level. Thats what our boys did today. They just worked together. Their defense was stronger. Their shots were prettier. Their passes seemed to just thread through the defense. They rebounded better. They played like a team and complimented each other. We walked away with a loss, but I think they played the best they ever had. They looked like a team today. I was so proud of them.

As we were driving home I couldn't help but be thankful for those times in our lives over the past couple of years in Ashley's story that Dave and I faced "opponents" who were bigger, better, and more prepared then we were. Although when we were up against "them" it was tough and we were exhausted and even sometimes frustrated and disappointed I know it made us better. Better parents, better people, better believers. We have learned to "gel" more as a team. We have learned to walk away from our defeats and learn from them. We have "passed" the ball to each other when the "defense" in front of us was just too big to get past. All in all this "game" with Ash has been the hardest of our lives, but we are definitely better "players" as a result of getting in the game. I am so thankful we are in it.

Ash attended the games with us today for the first time. She really enjoyed herself. The ball, the lights, the whistles, the buzzers. She did well. A little piece of normal family life for her(at least our normal family life). Ballgames are just a part of who we are and what we do. I'm so, so glad she went. Who knows, in just a few years she might be the one down on that court and Blake and Al will be the ones cheering her on. A mom can still dream.

You've got to be Tough

Working with Ash isn't all fun and games as our new speech therapist found out today. Ashley Kate cried the WHOLE time and was completely unreasonable. I'm not sure that our therapist was prepared for what she got. On Tuesday when she came to do the evaluation Ash was so sweet. A little nervous, but sweet, sweet, sweet. She allowed the therapist to sit with her on her pallet and play with her toys. Today...she wasn't having it. I was almost embarrassed by her behaviour, but then again Ash has a right to be a little less trusting of strangers than most children. I guess our new therapist is going to try and tough it out because we scheduled two more session for next week.

Ash also needs some occupational therapy, so it looks like we will be meeting with another new therapist next week as well. Eventually I hope to wear Ashley down and have her accept that people are always going to be around. I am hoping that in addition to developing some of those missing milestones that Ash might eventually begin to trust a few people in the process.

To be completely honest Ash has never really had an opportunity to receive consistent therapy because of illness. Our PT, Mrs. Sue has always been with us. Even before transplant when Ash was tiny and weak and literally dying because of her diseased liver, but therapy was only possible every once in a while when she was feeling up to it. This will be our first time to bring in speech and occupational therapy along with her physical therapy. We are going to give it an honest shot, but if things don't improve and she remains hysterical then Dave and I will just continue to work with Ash along with Mrs. Sue. Our hopes for Ash are that we will eventually be able to have our speech therapist begin feeding therapy with Ashley. That is our main reason for bringing in the new therapist. We desperately want Ash to learn to eat by mouth so that some day we might be able to rid her of the feeding pumps and mickey buttons. What a blessing that would be.

As things stand now we have some type of therapy scheduled every day of the week. Some days we will have two different types in the same day. Surely Ash will adjust to these women and surely she will not scream every time they approach once she learns they aren't going to cause her any pain.

So my prayer is that our therapist will learn to be just as tough as Ash is and that they will grow to love her as much as I know Mrs. Sue does(even though Ash is her worst patient EVER!). Ash is just too cute not fall in love with , don't you think?

Anyway, it was a rough one and we ran her daddy out of the house for a second day in a row. This man isn't even close to be as tough as that little pickle. He just wants to scoop her up and make her smile, but he knows the struggle will some day be worth it. He just can't watch it.

Hope you all had a good day. Goodnight and God bless. Trish

She was UGLY

Not my baby, but her attitude. Our sweet Ashley Kate went from this:




To this:





In a matter of minutes. I can't describe to you just how ugly it got once her physical therapy began this afternoon. She kicked and flailed and screamed and cried until she was exhausted. She had her daddy in tears. Its a good thing her therapist and her mommy are tough because she was almost believable. What a fight this little girl put up! She DOES NOT WANT to learn to stand up. She DOES NOT WANT to do ANYTHING except for what SHE wants to do.

At one point her therapist(who is a dear friend of ours and loves our Ashley very much) stated that if the rest of her patients acted the way our Ash did that she would have to quit. Now let me tell you that it does not make a mommy's heart proud to know that my daughter is the WORST behaved patient the therapist has EVER had. What does make my heart proud is to see how determined, stubborn and persistent our Ashley Kate is. She fought till the very end just like she has her entire life.

Guess what were going to do? That's right. Were going to have therapy 3 times a week. Its so good for Ash. I know she doesn't realize that what we are helping her learn is for her own good, but some day when our little one is scoring goals during her soccer game or tumbling across the gym floor she will be glad. I love her enough to keep going.

And guess what tomorrow is? Yep, its another therapy session, but this time it will be with her speech therapist. All I can say is were going to be praying for that sweet therapist.

Good night guys. Trish

Exactly one year ago...

...tonight this is what I wrote:


I love her. Thats it. Nothing more, nothing less. When I say that I love my Ashley I mean that I love her with every part of my being. She did not come from me, but she is a part of me. I need her. She is a part of us. We would not be "us" without her. Thank you God for letting me keep her. I was so very scared and I know I failed again, but you were merciful and you allowed her to stay with me. I owe you so very much. Thank you that today was not the day I had to give her back. Thank you for hearing my desperate crys. Thank you for letting me love her.

I don't think I can come up with the words to express the fear that overwhelmed me. It was so very close to my worst nightmare. Only God allowed me to keep her instead of receiving her. My heart broke. Physical pain ran through it. The tears have not stopped. My eyes burn from them. I am broken. My spirit is in pieces, but yet I still give Him praise because He did not take her home. My crys, my pleas, my prayers were so ugly. "NO,NO,NO,NO,NO". Not now, not today, not now, not today. God please, God please, God please." I must have cried them out loud a thousand times. I could not breathe. There came a point where I could no longer stand. I slumped to the floor and cried in a puddle with Kiley's mommy. I would stop and think," This is not happening. What happened to my baby. Somebody tell me this is not real. Then my crys, my pleas, my prayers would start all over again, and again, and again. My head is still reeling from the events of today. They all happened so fast. One test led to another, to another, and then before I could think I was signing consent papers for the needle and the drain to enter into the sack that so tenderly holds her tiny heart. I was told they only have to perform this once or twice a year on their transplant patients. Next I was told not to worry that what actually did happen to my Ashley only happens about 5%of the time. I still don't understand why she went into cardiac arrest. Neither do they. Tonight we are walking a fine line. Her vitals are stable. She is fighting the vent. She will not go down without a fight. They continue trying to sedate her but she opened her eyes and shook her head. She kicks her tiny bunny clad feet at them, and she waves her arms. She is there. She is fighting to wake up. She does not want to leave. She knows she has a purpose in this life. They tell me they do not know how long her heart had stopped. They did CPR on her for a full 10 minutes. They do not know if there was a lack of oxygen to her brain, but I am praising because she is physically fighting them every step of the way. I am praising because even after suffering cardiac arrest her lab work looks stable. I am praising because her blood gases are amazing us that they look as good as they do after what her body just went through, and they continue improving every hour. Only God can do this. Only God led us to this transplant center with this AMAZING staff of doctors and nurses who acted so quickly and knew exactly what must be done for her. I will forever be grateful to them.

Tonight I almost lost my youngest daughter and as she was fighting to stay with us, I was fighting to keep the best part of me alive. As a parent, the instinct that kicks in when your child is dying can not be explained. I am not me without Blake, Allison, or Ashley. I would not be the same without them. If I could find a blessing in all of this it would be that my Sweet Ashley Kate is still with us and she is fighting to stay. I thank God for the spirit and the strength He gave her. If only I could be 1/2 the person she is. I love her...

A year later and our sweet Ashley Kate is still with us. She is lying in that crib across the room and I can hear her making sweet noises as she drifts off to sleep. A year ago today we both lived through the absolute worst day of her life. A year ago today I saw the both of us slipping away. As she teetered between life and death my spirit did as well. I have never hurt so much in all my life. Violent, physical pain pierces your very soul as you watch one of your children slip closer to death than to life. The tears burn my eyes as I remember. All day long I have watched in amazement as this little girl sat before me and smiled, clapped, played, and giggled. He does have a plan for our little gherkin and although I have no idea what it is going to be I am just grateful to Him for allowing us to have this year with her. Thank you Father for your mercy and your gift to us. I am humbled. Trish

Trading Places

This morning as the kids were walking out the door for school I curled up under a blanket on the couch and giggled as I told them I was just going to stay there for a while. "What!" "Huh!" Those were the initial responses. "Were trading places with you and your going to school today." If only I had been able to stay on the couch all day, curled up under that blanket. Wouldn't that be the life?

They were convinced they wanted my job this morning. Until they came in from practice tonight and asked me how my day under the blanket was. When I told them it only lasted a couple of minutes and then the real fun began they decided their life was a whole lot better than mine. I tried to convince them that their lives weren't better only different. Hanging out with their friends had become a whole lot more appealing than cleaning up Ashley Kate's ostomy masterpiece. I would be willing to pay good money to anyone who had some kind of advice for teaching a two year old to leave her ostomy bag in place. I am definitely failing at this part of my job.

It was a busy , hectic day and I have just now stopped to take a moment to blog. Even on my busiest days I find myself continuously thanking the Father for this life. Just being here to do my list of "to dos" makes me smile. Ashley Kate is ready to pull an all nighter with her mommy after her late evening nap. I think we will stay up and finish the laundry in hopes of getting a head start on tomorrow. Hopefully with a little jump start we will be able to accomplish even more tomorrow. She has an eval for therapy in the morning and then the real fun begins again on Wednesday. I know her therapists think she's cute, but I am afraid their admiration ends right there. Ash has NO social skills and the minute they walk in the door she begins to cry. She will cry and fight the whole time they are here and she won't stop until she is waving "bye bye" to them as they are headed down the walk. Sweet Ashley Kate isn't very sweet to those who expect her to do a little work.

You just have to love her. I know I sure do. Even with her attitude, orneriness, and trouble making skills. I look at her and my heart melts each and every time. Those eyes, those lashes, her tiny nose and rosy cheeks. She scrunches up her nose and grins from ear to ear. I love being her mommy and I wouldn't trade places with anyone.

Hope you all are well. Thanks so much for those who continue to pray for our pickle. We find things to be encouraged about each and every day, and you are such a blessing to us. Good night my friends. Trish

"She's still here."

This morning Dave and I were working together as we prepared Ash for the day. Things like meds, feeding pumps, ostomy bags in addition to the normal diaper changing and dressing can make it enough work for more than one person. She smiled and giggled at us as we sang our good morning song(its quite original) and greeted her. Then Dave said, " Sometimes I look over at her and I think to myself "I cant believe she's still here with us". Do you ever think about that? She's still our little pickle and she made it." I just nodded my head yes. I really have thought the exact same thing. On several occasions and sometimes several times a day. I am amazed that shes still here.

In fact, I had that exact thought first thing this morning as I looked at her. I had a very restless night. Filled with nightmares that involved Ashley Kate. Before her transplant I struggled with lots of nightmares. I would be afraid to close my eyes each night because I knew that somewhere in the night I would battle images of losing her. Its been a long time since I've had to struggle with thoughts like that, but for some reason the images of loss were all to real and I woke searching her crib making sure she was still there.

Things have been going well. I sat in the living room visiting with my mom last night and announced how much I love being home. I do. It feels so right to be sitting around the table, making dinner, folding laundry, attending ball games, sitting in carpool lines, etc. I love the normal everyday things that take place in our lives. Ashley Kate is so happy. She has learned many new things. Her favorite new things is playing catch. She will play with anyone. She is so proud each time she chunks something across the room. One of her other new favorites is rolling the ball. We use her big therapy ball that is actually too tall for her to see over, but she loves to push it across the floor to one of us. You should see the smile that comes across her face! She has also begun to roll from side to side. This is actually a big one to us. For the past two years Ash has used NO rotation of her trunk. So to see her twist from side to side on the floor is actually a lot of progress. This morning she had turned herself completely around in her crib from were I tucked her in last night. We are very encouraged by this. At last she is starting to try and get somewhere other than where we place her. She still has no tolerance for being on her tummy. Within in seconds of placing her there to work on therapy or new skills she begins screaming and flips her self over to her back. She has never gone from her back to her front, but with the new side to side rolling I can't help but think it is someday going to come to her. She is still as stubborn and ornery as ever and we are still hoping to turn those behaviours into something that will assist her.

We start therapy again this week. Hopefully with Ms. Sue(if we can get on her schedule) and also with a new occupational therapist for feeding therapy. Ashley has lost ALL interest in eating and drinking. We can't seem to persuade her to open that little mouth for anything. We will more than likely be battling this issue for many years to come. She still has a nasty cold. It sure is persistent. So each morning we cough and sneeze and gag for a few hours. Then through the day she sneezes and her nose runs a lot. At night the coughing and gagging begin again. I don't know how long she will have it, but as long as she stays fever free and her lungs stay clear she should be alright.

We are so thankful for Ashley Kate as well as many other things in our lives. She brings such joy and happiness to our home. Just looking at her makes us smile. I couldn't imagine things being much better for us than they are right now. God is faithful and loving. He blesses us again and again. Ash is still here and her daddy and I are still amazed by the God we serve. Take care guys and have a great weekend. Trish

The Potter's Hand

Dave arranged for a very special surprise for Allison Brooke this Christmas. He gave her a gift to support her creativity and her love for art. I would have never thought of it and knowing that he did think of it was such a blessing. Allison was born with this love for creativity. She is artistic and talented in ways that he and I are not. When she found out what his gift to her was she had such a twinkle in her eye. Yesterday I was able to accompany her to her very first pottery class.

As I watched the instructor work with Allie and begin explaining the process of taking the clay into your hands and onto the potters wheel I could feel myself listening to more than just her voice. I can't really explain what I felt, but I have been running it over and over again in my mind. I watched as she took the pile of clay into her hands. She worked it over and over again before placing it on the wheel. Working all of the hidden pockets of air out of it. What looked good to Allie and I was not what it appeared to be. The instructor cut the clay in half to reveal a large pocket hidden in the middle. So she continued to work it for a while longer. Next she took the pile and placed it in the middle of the potter's wheel. Up to this point the clay was not very impressive. Just a wet, gray, dirty pile of mud and it didn't look like much to me. I thought to myself that it would take all day to make that look like anything of value, but I was wrong. In just a few minutes (literally in minutes) it was something. Something really amazing. Not just the item, but the fact that she could make it appear out of what looked like nothing. Allie and I were very, very impressed and I was getting excited knowing that some day Allison would be making me something very similar. Then she did something I never expected her to do. She crushed it. Just like that. In seconds it was gone. It returned to a pile of nasty, wet, mud. I couldn't believe it. Allie couldn't either. I later asked Allie if she would have done that and she said, "No way, but maybe she saw something we didn't see."

"Like what", I asked her.

She shrugged her shoulders and said, "Maybe to her it wasn't what it was meant to be. She could probably tell that something was wrong with it even though we couldn't and she knew she could make it ever better."

I have thought so much about that statement. He really is the Potter and our lives, my life, is just like that pile of clay. Nothing special until He touches it. Even when I look at myself and think, "Hey, I must be alright. I'm doing a pretty good job." He can see the inside. He sees the hidden pockets that I myself don't even know are there. There are days in my life when it feels like He takes His hands and mushes me right back into that pile of mud. Why? Why would He do that? I think its a lot like Allie said. The Father, the Potter, knows that He can make it even better.

He is molding me into the person He wants me to be. Just like Allie did with her pile of clay yesterday. She pushed it and pulled it. She rolled it and shaped it. She formed it into something special, and when she was done she turned it over and put something incredibly special on the bottom of it. She put her signature. The potter's signature. So that all would know that piece belonged to her. It was her creation. Unique and beautiful and very, very special. He too is working on His creation. His signature is on me. I am His, and if I am His then He is going to make sure that I am what He created me to be.

This journey our family is taking is changing us. He is using Ashley's life and her experiences to work on all 5 of us. Even on those days when we feel as though we have been smashed into that pile of clay. We are going to come out of the fire stronger, and when we do He will be able to turn us over and see that the Potter's signature is there placed on our lives by His own hand.

I'm going to enjoy this gift Dave gave to Allison.

Overcome

Tonight my mind has drifted back to where she was then and where she is now. I watch her laughing and playing with her daddy and I am overcome with emotion. Tears sting my eyes as I remember all that she has overcome. Her discharge papers from January of 2006 still reside in my wallet and they go where we go. I pulled them out tonight and the list of diagnosis was so, so long:

Acidosis (twice)
Anemia
Bacterium of newborn
Bandemia
Cholestasis
Developmental Delay
Failure to Thrive
Hyperbilirubinemia
Hypoperfusion
Hypotension
Intraventricular Hemorrhage
Leukocytosis
Leukopenia
Necrotising Enterocolitis
Neutropenia
Prematurity
Respiratory Distress Syndrome
Respiratory Failure
Retinopathy of Prematurity
Sepsis
Short Bowel Syndrome
Strabismus
Post Bowel Reanastomosis
Thrombocytopenia
Wound Infection


Wow. The list is even longer now. This only includes the days from her birth, August 4,2005, until discharge on January 20, 2006. Many, many more diagnosis can be added from January 2006 until January 2008.

When I look at this list of diagnosis and then look at my daughter I am humbled. So humbled that the God who created this fragile little girl would allow me to take care of her. If they had shown me this list before I laid eyes on our baby I would have been terrified. I know I would have doubted my ability to care for her. Instead of seeing this list I saw my daughter and she was truly one of the most beautiful things I had ever laid my eyes on. My heart was pierced and there were no lists, no warnings, no "be prepareds", that could have changed my mind. This was the child we had prayed for. This was the baby that visited me in my dreams. This was our child. From the day we knew she was here she was ours. We had no idea if she would be ours for hours, for days, for weeks, or for years, but at that moment we knew she belonged to us and if we had never been allowed to lay eyes on her or hold her in our arms she would always be our baby. Even if only in our hearts.


I have never written of all the amazing things that God did in her life and in ours those first six months. There were so many. I didn't write them down or share them with too many people, but they are etched on the pages of my heart. When I think of those early days I am overcome with thanksgiving, with awe, with appreciation, and with love. Maybe someday I will take the time to share those incredible days and all that they contained.

Overcome is a perfect word. She has overcome so many obstacles and we are overcome when we look into her face. I am so proud of who she is and I would not trade one moment of one day of her life for anything. I love you sweet Ashley Kate and I am overcome each time I look at you.

I love...

...the way they love her! It blesses my soul. How thankful I am for Blake and Allison and the way they love their baby sister.

I love to see Ash cuddled up on Allie's lap or on her hip. Al loves to take Ash everywhere in the house and has learned how to maneuver her very well.

I love to see Ash sitting in the middle of Blake's bed while he cleans his room. He just wants to hang out with her and it is the sweetest thing.

I love to over hear their conversations with her. Allie is constantly comforting Ash and making sure she is ok. Each time Blake walks into the room I hear him say, "Well, Hi baby pickle."

They love having her home. As parents Dave and I have often wondered what the time spent away from home would do to Blake and Allie's relationship with Ash. There were times that I worried we had been gone far too long for them to stay connected. It really is two completely different worlds. The world for Dave, Blake, and Al at home was so far from where the world Ash and I lived in was. It never failed to bless my heart to see her light up the minute they would arrive for a visit or to see the smiles spread across their faces once they walked into her room. This weekend Dave and I enjoyed watching the children together and seeing just how well they have re-connected with Ashley Kate.

Blake offered to "baby-sit" Ash on Saturday so Dave and I could spend some time visiting with each other. When I went to check on them Ashley Kate was asleep sitting up next to Blake on his bed and he was humming to her and patting her. Her little head kept drooping to the side as her eyelids closed tightly. As I stood at the door and watched he carefully positioned his pillows and gently laid her back. Next he tucked her under a blanket all the while being careful not to wake her. I was amazed that this tough, athletic, twelve year old boy could be so gentle. When he noticed me watching he explained how very tired she was and that he would stay next to her on the bed so she could nap. A while later I went back to see him resting next to her. He sure loves that baby.

Allie loves to sing and read to Ashley Kate. Dave and I spent some time with Blake in the batting cage out back on Sunday afternoon and I came in to see Ash with her big sister laying on the couch reading books together. Ashley Kate had her book laid across her face being silly. Allie assured me they were fine and that when they were done reading she would bring her out back with us. Our girls looked so beautiful to me in that moment. My heart was so blessed.

I love the way they love her. They love her with the love of Christ. Looking past the outside and focusing on the inside. Loving who she is, not what she can do. They no longer see the ostomy bags or the feeding tubes and pumps. Her scars don't bother them. She is their sister and they love her just the way she is. If only I could remember to see everyone the way they see Ashley Kate. Loving people for who they are inside and not focusing on the imperfections or the attachments they may have on their outsides. Never passing by without a heartfelt greeting or a touch. Just being the hands, the arms, the feet of Jesus for those He brings into my life. I'm learning so much from my children these days. I love them for loving Him, for loving her, and for loving me.

Big Mistake

Last night we made a big mistake. A mistake we had yet to make, but honestly was sure to come at some point. Dave and I left the house with Blake and Allison to attend Blake's basketball game and we left Ashley Kate, and Nan, and the CELL PHONE at home. Not good. Especially when things began to change with Ash's condition. Nan had no way of contacting us when the vomiting and fever began. When we walked in last night I could see the panic on my mom's face because she was here that day in September when things began the same way. She was clearly a little frustrated with us and she had every right to be. Taking care of Ash can be extremely frightening when she begins getting sick. I can't believe we left those silly phones! Anyway, once we walked in Dave and I became just as concerned. Ash had spiked a fever for the first time since coming home and this combined with the onset of vomiting is a red flag for us. It was a very tense night in our home as we tried not to alert Blake and Al of our fears. We put Ash to bed and tried to play a game of Monopoly with the kids. I continued getting up to check Ash's temperature and listen to her breathing. After the game I was in Blake's room and he knew things weren't right. We talked about the fever and what it would mean and I let him know that if it went any higher we would take her into the hospital and not be here in the morning when he woke up. "Just pray she's ok, thats all we can do for now," I told him. Allie didn't really figure out how tense we all were. So, I blogged and ask you guys to pray and this morning I KNOW that you did.


Ash is looking better this morning. Her fever broke during the night. She fell asleep hard and did not wake until this morning. She has not thrown up, and she is sitting in the middle of the floor playing while I type. That is more than she would do yesterday. She smiled a couple of times and gave her daddy a big hug. I think its going to be ok. I pray that she is ok. Things are very scary with Ash these days. I want so badly to relax and know that life will be just fine with no more surprises along the way, but I know that is not the reality of where we are. For some the road after transplant is very, very smooth and much of their struggles end after the recovery. There are others who don't survive the recovery and their struggles end and they wake up in the arms of Jesus. For us we seem to be somewhere in the middle. Things aren't easy and may never be, but she is here with us. Happy and living her little life to the best of her ability with what the Father has given her. We are more than grateful for each moment of every day. Today looks to be starting out better than yesterday.

Our prayer requests concerning Ashley Kate are these:

We are praying she is battling nothing more than this persistent cold. It has been with her for over a month now and I am told it will remain for quite a while.

We are praying for her organs. Thankful as always for each one of them.

We are praying for her growth and development. In many, many ways Ashley Kate is still an infant. We believe that some day she will learn to do the "normal" things like rolling, crawling, walking, and talking, but until now she has not.

We are praying for her labs. It has been a very difficult road to walk without her central line. Ash's veins are very little and very fragile. It seems that when they locate one it either clots off too quickly or likes to blow before giving us enough blood to run her lab work. We need 5cc of blood each draw for the necessary tests. Last time we were only able to draw 1.2cc. She is still bruised from labs that were attempted two weeks ago and Tuesday morning we will try again. Our home nurse e-mailed our team in Omaha and explained the difficulty we were having. They allowed us to go to every two weeks and if she is stable on Tuesday then we may be allowed to go to monthly labs. We are praying for this. Her little spirit is having a hard time dealing with all the sticks and pokes.


We are praying to remain home. Our family is better together and Ashley Kate is happier here. She would rather be home than anywhere else and it is so easy to see that in her eyes.

Thank you guys for praying last night. I have tried not to load our blog with the struggles lately and have wanted to focus on the blessing of being home. Last night we were desperate and I knew we needed each one of you to pray. So from this mommy's heart to yours I want to say Thank you again for standing with us. You are very, very loved and appreciated. Trish

Concerned

Update: Ash has now spiked a fever. It hasn't yet reached the "automatic" admission number, but if it does then off we go to the local hospital. The positive thing we see is that her ostomy output is low and under range. She has only required replacement fluids 2 or 3 times since we came. She is still battling a cough and lots of mucus from her cold and I pray the new symptoms are related to the cold and nothing else. She just doesn't feel good and this has us very, very concerned.


Ashley Kate isn't feeling well tonight. She is throwing up. Panic? Trying not to, but when thats the first symptom she showed before we found out she was rejecting its a little hard. She has been unusually fussy all day not interested in much of anything. I knew she didn't feel herself, but thought perhaps she was just being fussy. Now with the vomiting Dave and I have begun to look at each other wondering if we are about to start all over again.

Please pray for her tonight. We are nervous. Trish

Soaring

All seems right in our little piece of the world tonight. I can't tell you how good it feels to type that sentence. This little girl of ours looks so good to me. I look at her and my heart soars. I'm still trying to let the reality of having her home sink in. She belongs here and our days in this little house are so precious to my heart. I am so grateful to be home.

All of our children are tucked in their beds. I have kissed their precious foreheads, told them how much they are loved, and now I sit here reflecting on how incredible it feels to be with them tonight. Again, my heart is soaring.

Ashley Kate gave me the biggest, most deliberate hug today and it made me cry. I know there are not enough words to describe how much I love our little one, but knowing that she feels the same way towards me is an awesome, awesome feeling. We walk in the room and she lights up. We speak to her and she has trouble containing her excitement. We pick her up and she lays her little head on our shoulders and pats us with her tiny hands. My biggest prayer for Ashley Kate during those early, uncertain days was that she have the ability to give and receive love. If she never does anything else my prayers have been answered. She loves and she knows she is loved. The most appropriate word I can share is that I am soaring. The Father is so,so good to us.

Its been a good day. I am more than grateful. Good night my friends. Trish

What do you do?

What do you do when she's just too cute to correct? We have a lot of trouble on our hands. It seems that each and every day she gets a little cuter and a little naughtier. This little pickle knows she's cute and she also knows exactly what she's doing. We are really enjoying being home. She and I laugh and play all day long. I think she's the cutest thing I've ever seen.

This afternoon she decided to try and chew holes through her feeding tube. All the while I am telling her that its a no, no. She grins, giggles, and shakes her head no, no right back at me each and every time I correct her. She thinks its a teether. One of these days she's going to get a mouth full of that nasty formula and then I bet she'll think twice before biting into it again. Today she began locking it into her teeth and pulling it so hard with her hands that it actually snapped back at her. I don't know what to do with her. Once I got her occupied with something else she quickly found another way to be naughty. She knows she is not allowed to scratch and pull at her ostomy appliance. Usually when she starts this behavior we know she would like it to be changed, but today I knew it didn't need changing and so did she. She had this twinkle in her eye and this smile on her face that told me she was just out to cause a little trouble. I was trying to work on something while sitting behind her on the couch and she was supposed to be resting on her pallet. Instead she decided to make her mommy entertain her by jumping up and down off the couch. I must have gotten up 20 something times and each time I would reach her to remove her hand she would stop and start to giggle. I don't know what to do with her. She has these rosy cheeks and these twinkly eyes that just melt my heart. If you start walking towards her she starts waving at you like you she hasn't seen you in months. If I ask her a question she shrugs her shoulders like she doesn't know. Even though she is behaving quite naughty I can't seem to stop laughing at how her little mind works. I'm just so glad to have her home. She is a very happy baby and she keeps us smiling.


Tomorrow we are going on a little road trip to pick up Blake and Al. Ash is going to be so happy. She loves to go bye, bye. She reaches for the door constantly and every time someone comes into the house she tells them she wants to go bye, bye by waving her little hands. I can't wait for the kids to get home. They have had a great time with their cousins and we have had a great time giving Ashley Kate all of our attention, but we have missed Blake and Allie. I have been counting down the days and tomorrow morning is almost here. We are so excited about the start of basketball season. Both of the kids have their first games on Saturday and Dave and I can't wait. Basketball is my personal favorite. I played for years and years and then coached for 10 years before Ash was born. In our house basketball is just a "fill in" sport between Blake's baseball seasons and Allies soccer season's, but they are both really good at it. So each winter mom gets her basketball fix and the kids get a workout during their off seasons. Ash won't get to attend the games this year, but I am sure she will have a great time playing with her nan at home.

Only a few more days of winter vacation and then the schedules pick back up, school begins, and Ashley's appointments start to take off again. Dave and I have really enjoyed this week of lazy evenings here in the house. We have had long talks, enjoyed watching a few movies, cuddled on the couch, rocked and played with our baby gherkin, and gotten back into the habit of living our life together again. It has been such a gift. We are so blessed and so thankful for everything the Lord has done in our family.


My posts have been a little slow in coming lately, but I want to let you know how very much we appreciate all of your prayers. Your time here and your words of encouragement bless my heart so very much. I honestly don't know if we could have walked this road without you. Your presence has meant the world to me and I just wanted to say Thank you for loving our Ashley Kate. Enjoy your evening and may God bless. Trish

An "Uneventful" 2008?

The new year is here and its coming has been pretty uneventful for Dave and I. We talked about going here or there or doing this or that last night for New Years Eve, but decided on staying in with our pickle who is still battling a nasty cold. Again today we discussed doing several things but settled on doing absolutely nothing and it felt so good.

As I sit here tonight and reflect on today I realize how peaceful it felt. Just us. Here at home. Playing with our sweet Ashley. It was completely uneventful and it was exactly what this tired mommy and daddy and baby needed. When I think about the new year and all the possibility it holds for Ashley Kate my biggest hope is that it will end up just as today has. Uneventful. Just us. Here at home. Playing and growing up. What a blessing that would be for our family. Nothing pulling us apart or causing us concern. Just every day ins and outs blessing our hearts with normal family living. How wonderful it would be to have no hospital stays, no close calls, no surgeries, no moments that cause us to hold our breath and wonder what the next moment will hold. I think that uneventful just might become my prayer for us this year.

I say all of that while not forgetting the awesomeness of watching the hand of God reach down and carry us through the past year. It was incredible to know that He was there guiding us through those tough decisions and collecting each and every tear we shed. He really used 2007 to grow us. We are not the same and I think that may have been part of His plan for us.

As always no matter what tomorrow holds I know that we will not face it on our own. He will provide. He will strengthen. He will comfort. He will bless. He always has. Even in the midst of great pain He was present. Thats just who He is. The Father that loves us enough to carry our burdens and see us through to the other side.

What a joy it is to parent this little one. Dave and I have been so blessed. She still manages to melt our hearts each time we look at her. It is an amazing feeling to be the ones chosen to love this baby. So as we lay down to rest on this very first, uneventful day of 2008 I hold in my heart the hope of a whole lot of days of "nothing special" because it is those very days that make my life so incredibly special. Happy new year to each one of you. You are loved. Trish