I love that smile!

We arrived home late last night from Livingston. The children slept walked from the car into their beds. I carried a smiley, wide eyed Ashley Kate into our room and went to make sure Blake and Allie had actually found their way into their rooms. They were both snoring as I tiptoed into their rooms. I returned to our room to put Ash into bed and found her giggling and applauding my return. I was so tired and hoped that putting her to bed would be successful. Thankfully it was. Our sweet baby turned to her side, clapped her hands one more time and then closed her eyes. Dave and I carried our bags in and dropped them inside the door(something I am regretting this morning) and went to bed ourselves. I lay there thanking God for the family time He had given and for Ashley's life and "health" and blessings.

What fun we had together. The boys won there first game Saturday morning as Dave and I and the girls drove over after Al's soccer game (which didn't end so well) and we arrived in time for the second of the day. Our Tarheels lost by a couple in the next game but actually it turned out the way we had hoped because it gave them the opportunity to play for 3 games the next day instead of earning a "bye". I think they were the third seed going into the tournament play on Sunday. We played three close, hard fought games, against quality pitchers and good team and ultimately or Tarheels came out on top at the end of the day. Resulting in another championship. We were very proud of them. The baseball was great. The opportunity to watch our son play the game he loves so much was a blessing. The knowledge that just one week early the little girl who sat on her daddy's lap pulling off and putting on his baseball cap had been sitting in her hospital bed was almost too much to take into my heart. I welled up in tears several times as I watched her play the weekend away. She was back at the ballpark doing "normal" things and spending time with her family. God is so incredibly good to us!

Many, many people know who Ashley is and what she has been through but fewer children understand who she is and why she is different. Yesterday the little girls who had spent the weekend playing with Allie suddenly realized that Ash had a "tube" attached to her and that something wasn't the way it was supposed to be. Before I realized it, as Allie was sitting in front of me getting her ponytail fixed with her best friend next to her we were surrounded by a group of wide eyed, curious little girls who wondered what that tube was all about and wanted to know why they couldn't touch her or her toys or her books. As I fixed Al's hair I did my best to simply explain the differences in Ash and other babies and then I heard a voice behind me chip in and do it much more effectively. One of their mother's said, "but she is happy, and cute, and alive and you don't have to be afraid of her. She is still a little girl and she is very sweet." Simple. To the point. Beautiful. Words that touched my heart as Ashley and Allie's mom. There will be many moments in our lives that will require these "explanations" for the girl's sakes and what a lovely way to put it. My heart was truly grateful for her help. The girls said, "Oh, she is so cute" and away they ran to continue playing.

Ashley Kate is still sleeping this morning refusing to open those eyes. We have lots of playing, unpacking, and laundry to do today. I think she is concentrating on the latter two tasks and forgetting that her only job is to play. Silly girl. She needs to get up and jump into this pile of toys as I jump into the pile of dirty uniforms that need washing. Its going to be a blessed day! Hope you enjoy yours.

My two girls are sprawled across our family room. Sleeping. Isn't that great? It looks like my wish for two nights in a row without the voices of Steve and Blue is going to come true. Our little pickle is exhausted! I think all of her fit throwing finally caught up with her. Blake is on the road tonight traveling with friends to his ball tournament in Livingston, Tx. We will join him there tomorrow afternoon. How blessed we are to have such good friends that I know I can trust with my son. He has always been surrounded by his teammates and through the years we have made some very good friends. We are surely blessed.

The kids and I had a talk this afternoon on the way home from school. We actually had several errands to run picking up this and that for their games this weekend. We decided that through Ashley Kate's life and all of the times she has struggled we as a family have learned to just relax and enjoy this life. There aren't too many day to day things that occur that can ruffle our feathers anymore. We're just content and happy during her good days to be together and the little things aren't worth getting upset about. It's a wonderful way to live.

Earlier in the day Dave and I had lunch together and we were discussing something along those same lines. It had to do with our business, but essentially we talked about how we do the work for the love of the job and the patients and we let God work out all the rest. He has never failed to provide us with amazing patients and families. Its really fun to be Dave(most days)and to be married to him(most days. ha ha). This past week was "Beach Week" in our office and he went to work wearing Hawaiian shirts and flip flops every day. It was his best week ever! No shaving, no ironing, no stress. Just tons of fun, a fruit and smoothie bar, island music, a few funny looks, but mostly great patients who can appreciate his personality and laid back attitude about life. You know that whole "rainbow and daisy" syndrome he has.

Anyway, the important things in life are what we have learned to identify. Family, Friends, God, Souls, Kindness, Laughter, Appreciation, Peace. Its really what life is all about. If we can make a difference to each other, in the lives of others, and in the process allow what we do to lead to Christ then all the rest of this nonsense is just details.

I think we "convinced" Blake, Allie, and Ashley just how "blessed" they are to have us for parents(ha, ha. I was just kidding around with them), but honestly I would encourage you to take a deep breath and look for whats important in your life and don't worry about the rest. The bad times are tough, but the good times are incredible. Without enduring the difficulty I don't think we would have ever truly appreciated the joy that can be found in the ordinary, every day.

God bless you guys this weekend. We're going to go lay down and SLEEP. Yeah us! Ashley Kate is snoring and I am so happy! Enjoy your Saturday and your families. Trish

What a beautiful word! We slept, and slept, and slept last night. At least Ashley Kate and I did. Exhaustion finally kicked in and she slept for 12 hours! Poor Dave has had his sleep interrupted so much that he was wide awake from 3a.m. until 4:45. Since he couldn't sleep he decided to do a little work. I had no idea he had even gotten out of the bed. I was so tired!

We feel great today and we are being so productive! Cleaning out closets, putting away Ash's supplies, catching up the laundry, mopping floors, the whole thing! I love days like today. Dave is out of the office and we are working around the house together stopping quite often to entertain a little pickle who is very demanding of her daddy's attention. I just figure she deserves to be after spending so much time away from him. We have lots of errands to run this afternoon and we will be packing for a weekend at the ball park. I am so excited! I haven't seen the Tarheels play since last August. I just can't wait to see Blake on the field. Allie has a soccer game in the morning and then we will make the 3hour trip to the tournament and catch Blake's second game. We are looking forward to having Ash outside(since its her favorite place to be). She loves to go to the games.

I hope to get out to the pond to take new photographs of the girls this evening since the sky is a little overcast. You get the best pictures on days like today! Hopefully sweet Ashley Kate will be sweet and cooperative. She usually is as long as we aren't in a hospital, doctor's office or any place that resembles them.

I just wanted to share with you all how well rested we are and how successful we have been at weaning the time spent with Blue's Clues playing through the night. Not even ONE episode last night. I'm shooting for two in a row. Have a great day and God bless. Trish

Ash and I have returned from Shreveport and are now ready for a nap! She screamed and screamed at EVERYONE you can imagine this morning. I knew she wouldn't be happy about this appointment, but I honestly didn't expect her to yell at everyone.

As soon as we walked outside of the hospital she was all smiles. Can you say "turn it on and turn it off"? This little girl is smart! She clapped and giggled all the way home.

The central line that was placed last Tuesday is turned. It has a twist in it right inside of her chest wall. This is why the blood just stopped flowing. There isn't much that can be done about it. They sent 4 wires (all different sizes) down it hoping to have it un twist as they pulled them out, but it didn't work. The went ahead and used some TPA(its a clot buster) in the line and it seems to be flowing a little better now. Apparently blood is collecting at the point of the twist causing the line to be a little sluggish. For now (without another surgery) we have done what can be done. If need be we will repeat these procedures again and again until she comes off of the coumidin. We were also able to remove the surgi seal from the insertion site. This is the part that wasn't pretty. She was ANGRY as we worked on her. It had hardened over her sutures and was stuck. Getting it off proved to be difficult, but it is now off and she is no longer bleeding from the site. So all in all today was a success.

We have about an hour and half before baseball practice and I am hoping to close my eyes for a few of those minutes. I won't even tell you how much sleep Ashley allowed Dave and I to get last night. I'll just share with you that her daddy said, "Things are going to change around here." We'll just see if she cooperates or not.

Thanks for checking on her today. We really appreciate the time you spend here with us. By the way I wanted to say thank you to Renee, Ash loves the book and the kids smiled so wide!, Candi, it was very sweet of you to think of Ash this Easter, Lori, we loved the sunglasses and nail polish and I'll try to post a pic for you, Janiece, the Bible is wonderful!, and Amanda the check is in the mail!

P.S. Allie's puppy is a maltese and she is wonderful. We have had her since Thanksgiving. I highly recommend them.

I love this! Her hearts desire was to have this puppy and God enabled us to grant her the desire of her heart. There is no better feeling in the world than seeing the desires of your childrens hearts come true. What joy it brings to me to see the two of them together.

My hearts desire was Ashley Kate. I wonder if His heart was as blessed as mine the day she was born. He must have known He would be giving her to us. We are His children and I know His love for me is even greater than my love for Allison Brooke.

I'll never forget the way I felt the very moment I realized that He really did want to grant me the desires of my heart. He was listening. He did know my innermost thoughts. That day was a life changer for me. The God of all creation cared enough about my heart, my desires, my dreams to reach out and place this little girl in my arms. There are no words to describe how that made me feel. I knew that if me being her mommy and she being my daughter never came to fruition that God was still listening. He knew that I desired a child, this child, our Ashley Kate and that was enough to change my heart forever.

Just as my heart was blessed the day I knew we would be handing this bundle of Hope to Allison I can only imagine that God's heart was blessed the day He handed me our bundle of Ashley Kate.

Thats the way things go around here. Instead of a procedure on Ash this afternoon we will be having one done at 9am tomorrow morning. She will first be seen in interventional radiology where they will send a wire into her new central line in hopes of pushing through a suspected clot. How in the world she could clot off this line when she has been on a heparin drip and now on coumidin to keep any more clots from forming is beyond me, but thats what they think has happened. Then we will be seen in the clinic to try and remove some surgi-seal that was placed on top of the insertion site to stop the heavy bleeding she was having last week. The surgi-seal has hardened into a rock like scab and I can't seem to get it off. We will attempt it in their offices tomorrow afternoon.

So we will be in Shreveport for a good portion of the day tomorrow and hope to be home by late afternoon with a working line and our baby in tow. You've got to be ready for change at all times in this house when your raising a pickle. Talk to you later. Trish

I can function for several days in a row on less than 2 hours of sleep(and quite well I might add).

I can only listen to the annoying sounds of "Steve and Joe's" voices for 4 hours in the middle of the night until I have finally had enough.

I can only listen to the heartbreaking cry of my sweet Ashley Kate for 2 hours in the middle of the night before I become weak and turn that silly movie back on.

I can find joy in the smallest of things in this world like 2 lb 12 oz baby girls, butterflies, fresh air, lazy evenings on the couch, diet cokes and "uneventful days".

I can appreciate the kindness of others and return it now that I know how very far a little of it can go.

I can smile. Even on those days when joy is hard to find because my circumstances are overwhelming.

I can assure you that a "personal touch" in a doctors office, hospital, or even over the phone with their staff can make or break a tense situation.

I can promise you that a friend who knows exactly what your going through because they themselves have been there is PRICELESS.

I can now "go with the flow" because very few of my days actually turn out like I thought they would.

I can deal with those extra pounds that have piled on over the past two years, because honestly there are more important things going on than worrying about how chubby I am.

I can appreciate a good nap.

I can pack all the necessary things to take care of Ashley Kate in a matter of minutes, without missing a beat, but when it comes to remembering the charger to my cell phone you can forget it. (By the way, if you have tried to call me since Sunday you might as well stop because I have once again forgotten my charger in a hospital room and my phone is dead. )

We watched Blue from 10pm until 3am. Turned it off. Listened to Ashley cry for the next 2hours. Changed her ostomy appliance. Changed her central line dressing. Carried an exhausted baby to the car so we could take the kids to school. Found out that something is wrong with her new central line. Called her surgeons office in Shreveport. Made an appointment for 1:30 today. Took a shower. Stared at my sweet baby as she now SNORES and thought how much I would like to be doing the same. Am dreading the moment that I have to wake her up in order to dress her for our drive over to Shreveport. Know that the visit isn't going to be one of her favorites. Have realized that the sight of blood or the lack of the sight of blood can throw me into the very same panic.

Well its time to wake sleeping beauty and deal with the wrath of my decision to NOT give in and turn on that dog's show even one time today. Please pray for me. I have a feeling its not going to be pretty! Hope you have a great day. Trish

to look in the room and see my 12 year old "baby" lying in the floor blowing bubbles for his baby sister.

On the drive home from school I asked Blake to tell me one thing that God did for him today that blessed him. His answer warmed my heart. "Allowing you to be home to pick us up from school." It wasn't just an answer he knew I wanted to hear. I could see it on his face as he tried not to cry. He really and truly meant it. Oh, if I could make sure that I never, ever had to miss even one day of that carpool line! He is growing up so fast. Too fast. I don't have too many more years to pick this child up from school. He has already begun to plan how much money he needs to save each year in order to buy a car of his own. He is already planning where he wants to go to college. My time with him in my home, is growing short. "Is there anything I can do for you or Ashley Kate before I go to bed?" That is what he just said to me. Have I ever told you how much I LOVE my son? As I tucked him in he asked me to rethink Allie's discipline for an unacceptable behavior she did against him. His heart was heavy and broken just knowing her punishment was going to take away something she had really been looking forward to. "Her apology was sincere. I really think she meant it and is very sorry. I forgave her already". He loves his two sister's very, very much. It warms my heart to see that in action.

It warms my heart to hear Allie say, "Well, HI baby girl" the moment she opens the door and sees Ash in the car after school. She is the first person she speaks to and then she spends the drive home playing and entertaining her. "I think she is happy I am the one who sits next to her in the car." I think she's right! It warms my heart to see how upset Al gets when she sees us doing what is necessary to take care of Ashley Kate. Even though what we are doing is for her good Allie feels the need to protect her from any unhappiness, discomfort, or pain. She loves this baby girl and it warms my heart to know that God made her a big sister. She wanted this baby so bad. For years and years she would pray for a baby sister. She would ask me repeatedly, "When is daddy going to go buy us a baby?" That used to make me giggle. Allie thought you bought babies from the hospital. She NEEDED to know how much money she and Blake cost. She wanted us to "save" our money so we could go buy our baby. It warms my heart to see their relationship continue to develop even though they are forced to spend many weeks apart. When we come home they pick right back up where they left off. Ashley Kate's eyes light up when Allie sits down on the floor with her to play. When I think of the joy that will be on Allison's face the day that Ash finally takes her first step it warms my heart. She more than anyone desires to see Ashley Kate walk and talk like other babies.

It warms my heart to have her cuddle in close to me each morning as I pick her up from her crib. To feel her little hands patting me in a gesture that says, "I love you mommy.". It warms my heart to stand over her sleeping body and see the rise and fall of her chest and know that she has made it again. NO longer breathing because of a tube that in down her throat. It warms my heart to hear her giggle as my fingers wiggle above her as she anticipates being tickled. She smiles that toothy smile that spreads over her entire face. It warms my heart to see her applaud. With every emotion inside of her to express her joy in a situation. It may be because her movie has started again. It may be because I am putting on her shoes to take her outside. It may be because her daddy just stepped into the room. No matter what inspires the applauds it warms my heart. I remember a time when she had forgotten how to clap those tiny hands. It warms my heart to know that I am the one who was chosen to be her mommy. It warms heart to see that she loves me. It warms my heart to have brought her home.

It warms my heart to here in this place. It warms my heart to be here in our home with the children. To have the privelage of raising them. To know them. To love them. To be near them.

... my name is Ashley Kate and I am 2! If you don't believe me, just ask my mommy and daddy. You can ask Blake and Allie too if you'd like. Last night as I was throwing my fit before bedtime they both came out of their rooms to ask mommy and daddy what they were dong to me. They were ready to make them stop if they were hurting me, but they weren't. They just turned off the TV and they forgot to ask me if I was ready for them to. I'm glad they think I'm cute because if they didn't I think I would have been in BIG trouble by now. I just wanted to say Hi and remind everyone that I am still 2 years old. Thanks for loving me today! Ash

P.S. don't tell my mommy, but I threw that silly bow on the floor when she wasn't looking!

Kids ready for school

Call the pediatrician

Arrange for supply delivery

Loads of Laundry

Wake up Ash

Play with the "pickle"

Pile of dishes

Eye appointment

Trip to the pharmacy

Run to the office

Carpool

After school snack

Back to the pharmacy

Grocery shopping

Preparing Dinner

Folding that Laundry

Helping with Homework

Waiting for Dave to walk through the door

...is GREAT!

Just a normal day. One like I haven't had in far too long.

Ash is settling in nicely. Being a typical two year old. Playing with her toys, throwing fits, watching Blue, throwing fits, building blocks, throwing fits, refusing to eat, throwing fits, removing her dressing to expose her sutures, throwing fits. Did I mention to you guys that Ashley Kate learned to throw fits last week? If they gave Emmies for fit throwing then I can assure you she would have been awarded one for her performance. I am at a loss. After spending 47 days sitting in a hospital bed and watching Blue's Clues on demand because there is nothing better to do and then coming home where mommy doesn't think its such a good idea to have it on 24 hours a day she is a tad bit angry. We are in the same place we were in last spring once we returned. The girl feels a little attached to that Blue puppy and mom and dad are tired. What are we going to do?

I'm not really complaining because to tell you the truth it is really cute, but the mom in me knows that it is unacceptable to throw temper tantrums. She and I are going to come to a some type of solution because if she performed one of these tantrums in public I would be humiliated! On top of it being "cute" I'm just so grateful she is here and has the ability to throw those fits. I know it is not an acceptable excuse for not parenting her, but right now we just want "to let her settle back in". Hopefully the "settling" won't last too long.

On the drive home today Dave and I had a conversation about why things had to be the way they had to be. It is hard for me to understand why His death had be to the way it had to be. Why that death? Why so violent? Why so horrible?

Dave just said, "Trish, why do you ask me things I don't know the answer to?"

We talked for a while longer and just enjoyed knowing that Christ did not stay in that tomb, but that He had risen and given us a hope.

Tonight around the dinner table I asked the kids the same question.

Allie just looked puzzled and said she really hadn't ever thought of why it had to be that way. Finally she decided it was probably just because thats the way the people wanted it to be.

Blake said, "Hmmm. That's kind of weird that you would ask me that because I've been thinking about it too. I think it was because of the magnitude. You know the magnitude of all our sin? It was so great that an ordinary death probably couldn't pay the price for it and so it had to be the way it was."

Stunned. At his insight and the wisdom God gave him to share with me at that moment.

I've been struggling with the thought of how horrible Christ's death was on the cross and wondering why God didn't make it easier for His son. Then I thought how incredibly painful it must have been to turn His back on His son and for Jesus to feel as though He had been forsaken. What pain it must have caused in the heart of God! What a lonely feeling Jesus endured because of me. My sin, my arrogance, my mistakes, my selfishness, my magnitude of sin.

I thought I had felt alone. Long nights away from Dave, the children, my sisters, my friends. I thought I understood lonliness until I really thought long and hard about how alone Christ was that day. He ALONE bore the burden of all my sin. He ALONE endured the pain of my punishment. He ALONE died on that hill, on that cross. Not even the Father could stand with Him as he was covered in the magnitude of my sin. It was so great that He had to turn His back on Jesus and leave Him completely ALONE during that moment. I have never been that alone. So alone that not even God the Father was absent from me. Oh, I have been away from Him many,many times, but Him from me? Never has He failed to be there ready to stand next to me.

Tonight as I enjoyed conversation with my son after so much time away from him I couldn't help but think how I could not stand to turn away from him. What pain it must have brought to the heart of God! The tears burn my eyes knowing it was because of me.

I lay across Allie's bed tonight and we had a conversation about sin. Sin in our hearts and in our lives. We talked about how careful we must be to not even take that first step toward doing something we know is wrong. Her beautiful eyes were wide as we read in her devotional how something that seemed so small could cause sin that was so large. I listened to her pray tonight and my heart was touched by her words.

What a gift it is to be here tonight! To have the opportunity to see my children and to touch them and to listen to them talk. To see Blake sit and play blocks next to Ashley Kate on the floor. To hear Allison kiss Ash's puffy cheeks and say, "I love you baby girl. Did you know that?" To listen to that miracle baby as she cries in the other room because it is bed time and she still has so much she wants to do today. Her daddy keeps saying, "Night, night Ashley Kate" and she just isn't happy about it. To be in this little yellow house, cuddled under a blanket, sitting in the family room, and knowing all three of the children are safe in their beds. Do you even know how precious this is to the heart of a mom? I have no words to express it.

Tonight as I close my eyes my conversations will not cease. I have much to be grateful for and so much to tell Him. I can't believe we are here! I am in awe that our sweet Ashley Kate is back in her bed! My heart aches with thanksgiving. Where would I be if it were not for knowing who Jesus is? Without Him I would have crumbled by now. I would not have the strength to watch our baby fight for each day and each breath. I am so thankful He loved me enough to endure that horrible death, to put sin in its place, and to raise again that Easter Morning! Because He is who He is I can be who I am. I am Dave's wife. I am Blake, Allie, and Ashley's mom. I am saved.

Thank you God for loving me, for saving Ash again, for bringing us back to our home, for Jesus, for your amazing gifts, for this life. His, mine, and hers.

The sweetest word I know...HOME.

We have just arrived home after 47 long days away. We are happy. We are thankful. We are blessed.

Ash is trying to settle in, not really sure if this is for real or not. She is very clingy and fussy. I know that when Blake and Allie walk through that door tonight she will know for sure that its for real.

Thank you once again for standing in the gap for us as we travel through the ups and downs of Ashley Kate's fragile health. You are loved and appreciated more than we will ever be able to convey to you. Your prayers are heard and have been answered and I love you guys for taking the time to lift up our sweet baby girl to our Father.

I will share more later(perhaps once all the children have been tucked into their beds), but for now I wanted you to know that Dave, Ashley, and myself are finally home.

Happy Easter.

He is Risen. He is Risen indeed!

Remember grade school? Remember being so bored during history class that you just "had " to go to the bathroom? Remember being told you would have to wait until "Susan" came back with the hall pass? Guess what we were granted today? Thats right! We were given a "hall pass" to go off the hospital grounds and take our baby gherkin to play at the park. Can you believe it?

We have been so blessed here at Schumpert. Every day they go out of their way to make us feel welcome, comfortable, and like we are still a family. We shared our disappointment about not being able to take Ash home so we could enjoy the beautiful weather by taking her to the park and our nurse said, "Why don't we ask for a pass?" A what? "You mean they actually have those and give them out?" "Sure", she said. " I don't see why they wouldn't let you take her for a while."

Four hours! Thats what we were blessed with. Four hours to play. Four hours to feel normal again. Four hours to take Ash in our car and go wherever we would like. Four hours that we packed full of fun. We spent the first two at the park playing. The next two we took her for a walk over at the boardwalk. It was so fun. There was music. Fountains. The Easter Bunny. Sunshine. Everything to make a two year old who has been cooped up in a hospital room for the past 46 days feel like she was normal again. I can't express to you the way it felt to just be her mom and dad again. Such freedom. Such a gift. Such a blessing.

We were so blessed we just wanted to share our day with you and let you see that our Ashley Kate has come back again. Dave and I talked about how amazing she is and how amazed we are that she pulled out of this once again. Our God is so good and we are more than blessed to have been given the past 46 days with our sweet girl. So we hope these pictures make you smile. The time away sure did put smiles on our faces.

Early this morning they came in with Ashley's INR results. Not perfect. We have to stay. Of course we are a little disappointed. Its going to be another great day and we had so hoped of getting home so that we could take Ash to the park. I guess we will just have to settle for another walk around the hospital.

They promise that if tomorrow mornings results are in range that they will have us on our way bright and early(the doctor likes to round by 6a.m.!)

Ashley Kate and her daddy are sleeping in this morning. Who knows when they will wake up? Ash has something in common with her big sister. A grumpy attitude in the morning. Those silly girls do not like to be woke up . If they wake on their own they are all smiles and sweetness, but if they have to get up its a whole different story. Daves sleeping in just because he can and that makes me happy for him. He works really hard and gets up early day after day so to see him snuggled up under the covers with a smile on his face brings a smile to mine.

Blake and Allie have had an amazing spring break. My sister's did a great job with them(as always). They have had a really great time and today they are in for a wonderful Easter celebration. Holidays are a BIG deal in our family and we do them all in BIG ways. I know they are going to be smiling from ear to ear all day long. We generally do the egg hunt and stuff along those lines on Saturday so that nothing interferes with the celebration of HIS resurrection on Sunday. We are determined to keep the two separate. Always wanting the children(there are 11 of them who were "stair stepped" over the past 12 years and a few older ones that aren't really children anymore) to have a great time, but also wanting them to realize the love, the sacrifice and the miracle of Christ's death and resurrection. Without His willingness to endure that death we would have NO hope and life would be meaningless to us. Its all because He loved us and WANTED to know us. Not because He NEEDED to know us. I find that amazing!

Anyway, Dave and Ash and myself will try to be home for Easter, but if were not then we will still know that we are loved, the price was paid for our sin, and we have an eternal hope because of the gift that was given. That's love and life is blessed.

Happy Easter my friends. Trish

So I took off early this morning and headed home for the first time in weeks. The weather was beautiful and the sun was shining brightly. Its amazing how much better you can feel the minute you step outside and see that the world is still there. I called my sister while I made the drive towards Texas just to let her know how happy the puffy clouds above my head were making me. I talked about the fresh air, the green grass, the sunshine, and those clouds and even thought it must have sounded so incredibly "cheesy" all she could say was how happy she was for me. She truly was happy for me. That blessed my heart as much as being outside.

I left Ash and her daddy to spend a day together. She was sleeping when I left, but I'm sure when her eyes opened she was thrilled to see he was still there with her. I ran home to do the things that make you feel like a girl. You know bubble baths in your own tub, a cut and color from my hair stylist, manicure and pedicure, normal clothes(something other than my usual t-shirt and athletic pant hospital style). It felt so great!

Pulling into our driveway made my heart smile. The grass is turning green, the gardens need planting, and the house needs painting but it was the most beautiful place in the world to me at that moment. I ran inside to visit with Hope (our dog). She is so big and fluffy! I took that bubble bath and dressed for the day and then I ran out to pick up Ashley Kate's Easter Basket and supply of plastic eggs. She is sleeping right now, but when she wakes I'm sure Dave and I will be spending the evening picking those silly eggs up off the floor over and over and over again. She loves to throw those things! I can't wait to see the smile that she will sprout as soon as she figures out its Easter again.

Dave and Ash had a great day. They took a long walk around the outside of the hospital and enjoyed the spring weather. She had NO pumps, no IV, no drips, no NOTHING connected to her! Dave said she had a few minutes of just being a little girl and it was priceless! Her heparin drip was stopped today and the word is that if we can get 2 INR levels in the target range in a row then home we will go. We had our first one today, and we are hoping and praying for that second one to appear tomorrow. Home for Easter would be such a blessing. If not then perhaps by Monday is what we are being told. I can't wait for life to just be normal again. I am hopeful that we might get a good long stretch this time.

Sorry about the lack of updates today. Dave was too busy playing and forget that he was"on" and I was "off" for the day. She is doing great and looking good. We can't help but count our blessings when we see how good she looks. Ash is amazing. The way she bounces back each time is such a miracle and we are so grateful she is still with us. Thanks for praying for the pickle today. I pray your weekend is full of remembrance of His sacrifice and memory making opportunities with your families. God Bless. Trish

...beaten and bruised but her spirit is not. Ash has been the happiest baby today. She is bruised from her right to her left. She is bleeding from her central line site and it is frightening to us, but she is not frightened. She is giggly and playful. She is having some of her best days since becoming sick 6 weeks ago. We have played and laughed all day long. She inspires me to be better, live better, and love life better. I love this little girl!

When she is dressed she looks so good. You can't even tell she is sick. Unfortunately her coags are really out of whack. This is a tough game. She is bleeding from her line site because her blood is so thin and she has very little ability to clot. This is why it would be too dangerous and too frightening to have her at home right now. The smallest injury, self removal of her ostomy, or wound could cause big, big problems for her. As soon as we can figure out what dosing of her medication leaves her in a safe enough place to not clot off the vein, but still not be so thin she could lose too much blood we will be going home. Its going to be a scary 3 to 6 months for us. Dave and I are still adjusting to her bruises and new frailty.

I know its kind of hard to see in this picture(the lightings not the best, but the smile is priceless!) The bruising goes all the way across her chest. I hope I don't offend anyone with this photo, but I am hoping to give you a realistic idea of what is going on with her. This whole blood clot thing has thrown us for a loop. The balance of how much of this med and how much of that one is proving to be difficult. Just another page in her story, but one we are having to learn and understand in order to safely care for her. PT levels, INR levels, coags, clotting factors, etc. are all new areas for us to concentrate on . I'm used to watching her CBC results, her metabolic panels, chemistries, liver enzymes, and prograf levels. Now I am closely monitoring these new areas as well.

More than anything tonight I am thankful that her spirit has returned and her smiles are never ending. Ash is a happy girl and she is loving life. Even life here in the hospital. We are getting so close to home. I can't wait to take her there!

Thats what her daddy said to her early this morning as they rocked together still wearing their "bed heads". It made me giggle to sit across the room and listen to him try and be serious with this little girl banging on his head.

"Today is March 20, 2008 and I think that by March 20, 2009 you should be saying a thing or too. I'm going to give you a year to learn how to talk and then I want to know all the things you've been thinking. O.K.?"

He tried to sound stern and she just sat and there pretended she couldn't hear him. I smiled because I wanted to know "just what your going to do if she doesn't?"

"Well, I'm not going to discuss that because she's going to be talking and then I'm going to tell her how proud I am of her. I just believe she's got lots of things to tell us about."

Bitter sweet conversations. Giggles and Tears.

"Remember when we thought she would be talking by now? We used to always say, "she'll be doing this by now or that by now", I asked.

Dave didn't really reply this morning. I saw the tears well up in his eyes and he just kept on rocking our baby gherkin.


I have had a lot of people ask questions along these lines lately so I thought I would take a moment to answer them. I'm not offended by your questions, but I won't lie and say that it doesn't sting when we have to see it in type, say it out loud, or think too much about it. I wish it didn't hurt, but I am afraid that when the dreams you had for your children just don't come true that there is pain associated with the realization that they haven't and may not.

So here are the answers.

Ashley Kate does not speak. She used to. She had just begun, and then in January of 07 she suffered a cardiac arrest. Code. CPR for 10 minutes. She was speaking the hour before it happened and has never said a word since. No one on our medical team has ever said that this why she no longer talks, but I'm her mom and I saw what happened. She was playing on my lap saying, "my momma" over and over again as we sang and clapped and read books that afternoon. As I held her and she babbled the cardioligist stepped in, introduced himself, said he needed to do this and that and the rest is history. So no she does not talk. Will she ever? We are hopeful that someday(by March 20 2009 according to her daddy) she will again.

Ashley Kate does not walk. Nor does she roll over, or crawl, or creep, or pull up, or have any interest in doing so. Not because we haven't tried. Or not because we don't continue tying. She works hard as do we. She has countless hours of therapy, but each and every time we start to make progress she has a set back and we wind up in the hospital again and again and again. There is no evidences that she can't. There has never been even one physician who has found any reason for us to think that she does not have the physical ability to do so. She just doesn't.
We think she doesn't think she needs to. This is probably one of the most painful areas of Ash's life for Allie to deal with. She has lots of friends with baby brothers and sisters who are Ashley's age and they all crawl and walk. Al has to repeatedly answer questions that have no good answers. We don't understand it ourselves and so its hard to help her understand. Its even harder for her to help her friends understand when they ask things like, "Well, why doesn't she? Whats wrong with her?" In Allie's heart these questions sting. She doesn't want to think that anything is wrong with her baby sister, but it is constantly pointed out to her that something is. This makes me cry. I'm trying to come up with a way to help Al get through this.

Will Ashley ever catch up and be normal?

We do not know. We do not want to limit her possibilities so we answer this question by saying, "We hope so. Someday she will." To be completely honest. We have no idea. We hope. We wish. We work. We pray.

Does Ashley Kate eat? No. Not by mouth. She has on again and off again success with baby foods, but she will take nothing with texture and she has never chewed anything. We will battle feeding issues for a long time with our little one, but we keep working, keep encouraging, keep trying.

Did Ashley lose her hair again?

Yes. This is killing me! Honestly, I know this is the least of our worries, but hair matters to me. She has very little of it left and for some reason(probably because I want her to have it so much) it comes out each and every time she becomes ill. The "ponytail" days are a thing of our past, but don't you worry because we have LOTS and LOTS of BIG< BIGGER< and "watch out you ain't seen nothing yet" BIG kind of bows on their way. Hair or no hair this child was destined to be a princess. (I'm not joking about that last statement!)

What organs did Ashley Kate have transplanted?

A liver. A small intestine. A pancreas.

From everything that we know she was born with normal organs. Premature, but healthy so to speak. She developed a disease called NEC within the first week and half of her life. Basically that means the tissue of her small intestine began to die from being fed before it was developmentally ready to digest food. Lots of babies develop NEC in NICUs, but many of them survive with no long term damage, and many of them die from the disease. We are blessed. Ash survived it without a mommy or daddy there to fight with her. Oh, we loved her. We were fervently praying for her without even knowing she was fighting for her life. We were in court seeking the legal papers to allow us to get to her as fast as we could and I haven't left her since.

Her small bowel never recovered and never gained the ability to absorb food or nutrients. So she was fed inrtaveinously. The content of these feeding kept her alive, but killed her liver in the process. By May of 2006 she was dying from liver failure, and we were desperately waiting on the Father to show us what to do and which way to go. Ultimately Ashely Kate received her new organs 20 days after being listed on the organ transplant waiting list and that was just one more miracle He worked in her life.

The pancreas was transplanted just for fun. Not really, but kind of. Her pancreas was fine, but they left the donated one attached and hooked it up along with her liver and intestine. She now has two that both function and operated inside of her tiny body. Really amazing huh?

To be an organ donor is a selfless act that brings hope to those without it, gives time to those who are running out of it, and helps heal hearts in those families who are helpless to stop their loved one's disease from stealing them away. I would say from the bottom of my heart that if you chose to become an organ donor I would forever be grateful to you. You have no idea what a gift it becomes to those who are in desperate need of a miracle. Please consider it, you won't be needing those organs when the time comes anyway.


So what does Ashley Kate do?

She lives. She laughs. She plays. She shines. She sparkles. She has joy. True and uninhibited joy. She cuddles. She giggles. She watches Blues Clues and Baseball. She lights up for her daddy and she holds on tight to her mommy. She waves hi and bye bye. She claps. She celebrates. She completes a family who waited a very long time for her to arrive. She makes Allie the big sister she always longed to be and she brings a smile to a big brother who absolutely adores her. She inspires. She changes hearts. She leaves her "prints' all of over those who love her. She does everything that He has in store for her to do at this time in her life. I have to keep reminding myself of that when the tears start to fall.

So when I look at my sweet Ashley Kate I try and concentrate on all the things she does do and the things she doesn't yet do I tell myself that we have a lifetime to work on them. I think thats a good way to look at it.

We have had no Internet connection today and I'm not really sure why, but here we are and things are going well. Ashley Kate looks great today! She is really bruised and her chest is pretty sore, but other than that she is happy and playful. The severe bruising is because of her blood and the medications she is taking to keep her clotting factors low. The hospital ID bracelet even put a bruise around her ankle. I have never seen something like that happen. Its a little scary, but I'm sure we will adjust to her "new look".

This morning I was told that they would like to send us home tomorrow, but after learning what I did about the length of time it takes for the cumidin to reach a therapeutic level in her blood (minimum 5 days, and yesterday was day 1) it didn't really make a whole lot of sense to me. We have one doctor saying we can go and another(the one who is in charge of the blood thinners) telling us there is no way he thinks we should be going home this early. As much as I want to be back in our home, I agree that we can't take her while her clotting factors are what they are. We are shooting for a 50-70 second clotting time. That's our goal. This morning our clotting time was 181 seconds. This afternoon it was 311 seconds. The last thing I want to happen is to go home too soon and have her bleed out because her blood has no ability to clot. We are content to stay until things have worked themselves out and the heparin can be shut off and the cumidin be at the right level. More than anything we want Ashley Kate to be safe.

I have spent lots of time on the phone trying to get all of our new supplies(now that we have another central line) arranged to be sent to the house. This is never an easy thing to do. She is also on a different formula and that causes lots of hoops to be jumped through as well. I thought I would start early because we have none of these supplies at home since she hasn't been home with a central line since last August. I know it will all get worked out, but it sure is stressful getting all the dots connected.

Another holiday in the hospital. At first I was feeling a little discouraged, but then I started looking at this whole thing from a different angle. Its not just another holiday in the hospital. Its another holiday with Ash. I love that! This will be her 3rd Easter. I find that incredibly encouraging knowing that so many thought she wouldn't even make it to her first one. We actually spent her first Easter at home. She was so tiny. Only 10lbs at 9 months old. Her second Easter we barely made it home. She actually spent the week before it on the oncology floor at Dallas Children's. We were sent home 2 days before and she got to go to church with us and stand before the congregation for about 5 minutes that Easter morning. This third Easter we will either be here at Sutton Children's or we will have just arrived home. How great it would be to sneak into the balcony at our church! Ash and I haven't been in so long. I'm sure we shouldn't and probably won't but it would be nice to be in church on Easter morning.

Last year Ashley's favorite toys quickly became her Easter Basket and plastic eggs. She was really weak at that time and the eggs were light enough for her to play with. She could bang them together and she loved the colors. She learned to fill her basket and tip it over. We played with that Easter basket everyday until she went into rejection in September. I was convinced she would be sitting under our Christmas tree for pictures with that beloved basket in her lap! I'm really excited to have Dave sit with her on Friday so that I can run out and pick one up for her. I know she is going to love it! I feel so blessed to be close enough to home that Dave can come and sit with her so that I can run to the store to pick things up( I haven't driven in a while so I think Dave is glad he doesn't have to ride there with me).


So who knows where we will be for Easter? Perhaps we will make it home and perhaps we will spend it here in the PICU at Sutton's. Either way I am looking at this as a huge blessing to have been given 3 Easter's to celebrate with our sweet Ashley Kate. What a gift!

P.S. Elizabeth, thank you so much for the package! It brought huge smiles and we were so blessed. Your thoughtfulness was really appreciated.

If memory serves me right we have now been in 7 different hospitals with Ash and we have found that this place ROCKS!!!! I needed to do some laundry for Trish tonight, no problem the laundry room is on the same floor and they even provide the laundry soap. The machines are FREE! Can you believe this?

Yesterday they told me I could bring in an air mattress to sleep on so we could be more comfortable. More comfortable? at a hospital? This place is great!

Friendly. Welcoming. Caring. Family oriented care. Doctors who come into our room and sit down just to chat with us about the plan for the day. They have gone out of their way to take great care of not only Ash, but Trish and myself too. Ash has always gotten exceptional care from her teams of doctors,but this hospital has added lots of little extras to make the stay easier on the patients and the families. It has been so appreciated and I thank God for bringing Trish and Ash here.

Conveniently located just 60 something miles east of our front door. This place rocks and I am so thankful to have my girls here, and so thankful to be able to see them every single day.

Ash is still on a little bit of oxygen tonight, but she looks pretty good to me. Her face is kind of puffy, but she is happily playing with her toys. Except when someone walks in the door. She is afraid they are going to hurt her. I hope someday she will be able to outgrow some of this.

Thank you for your prayers for our pickle today.

Goodnight

Dave

Ashley Kate is awake and playing. She just opened her eyes, asked for a drink and reached to sit up. She is a little groggy and a little grumpy, but Blue is on and she is playing with her blocks. She looks pretty good.

The old line has been removed. The blood clot remains in the vessel currently attached to the walls. She now has a broviac central line in the same spot as her original line that was placed when she was brand new. She is requiring a small amount of oxygen support, but I am hopeful that as the anesthesia continues to wear off that she will not need it for long. I'm comfortable with our decision. I pray for no line infection and that she will quickly reach a stable cumidin level so that we will not have to keep it for too long.

Currently the plan is to be here for at least 5 more days as we adjust her cumidin dosing. As long as we can get that settled and she remains stable then away we will go to our home in Texas. So we are hoping for discharge sometime next week. This is what I have heard.

Only 4 more hours until Dave arrives to spend another night with us here at the hospital. I spoke to him at lunch time and he sounded exhausted. He's not used to staying up until 1 or 2 and then getting up at 6 to drive into the office. I know he is tired, but not too tired to keep coming to see the pickle. He has missed so many days with her and hes just not willing to give up anymore if he can help it. I really appreciate him. It has been so nice to have his company and to see Ash light up while they play. I know he is looking forward to the weekend.

Thank you for your prayers. Thank you for your time spent here at Ashley's Story. I hope you are blessed as much as you have blessed us. We love you guys. Trish

Ash and I are just hanging out while we wait for her turn in the OR. Yes, we decided to attempt another line placement. Mainly because they need weekly labs to monitor her status for quite a while and for the clotting factors and her little veins just won't cooperate with that schedule. They basically have a one shot deal. The only passable access she currently has (other than a femoral line which we won't do because of her ostomy) is her right sub clavian. The doctor feels like he can place the line. He actually said he is about 90%sure based on the scans he has done on her that he can get it placed, but he said if it doesn't go in after a couple of sticks he will stop. In that case everyone will just have to take what they can get as far as lab work and blood draws go.

We are a little nervous about another line because another line means another chance of a blood clot developing on that side. She will be on the anti coagulants so that should help but they said that once you develop a clot you are always at a higher risk for more to develop. To be honest there are so many different areas of Ashley's care that blood clots and loss of access never really crossed my mind. We stay plenty busy with all the other stuff that goes along with Ash's transplant. It is a never ending maze of issues that we will forever be navigating. We have often been told that when you tranplant an organ you are actually trading one disease for many. I guess they were right. We have definitely developed a port folio full of them!

I look at her face and into her eyes. I listen to her giggle and light up when she smiles. I rock her to sleep as she pats me on the shoulder, and I know that with all the complications. All the issues. All the struggle. It was worth it, and we would do it for her again. She lights up a room and loves her life. She doesn't know its supposed to be any different and I love her innocense. I am so grateful for this child.

Well here they come and here we go. Thanks for praying for us, and for her. It means so very much to our hearts. Take care today. Trish

...her daddy's on his way! I love knowing that every night he can come on over and play with this little pickle. What a blessing it is to be close enough to home to make the commute over each day.

Its been a long day. A long day of decision making and at the end of it we still don't know what we are going to do. Trying to choose the best treatment, the best option, and the best long term choice for Ashley Kate and this whole blood clot thing is wearing on me. I truly and honestly don't know what we should do for her.

The temporary line has to come out. We all know that. Remaining on a heparin drip for the next 3 months is not an option. We must switch over to Lovenox(sp?) shots(2 times a day for 3 months which is 90 days equals 180 shots. Ouch!) or to Cumidin to treat her blood issue. Which is safest? What is best for her? I have no idea. The main problem we are having in making this decision is that drawing blood from Ashley Kate's 1 accesible vein is a nightmare and it will not hold up to weekly draws. It has proven that to us. So, regardless of which medication we choose (every one here is leaning toward Cumidin and everyone in Omaha was leaning toward Lovenox) she must have her blood clotting factors checked weekly leaving that 1 vein in a bad place not to mention the stress it puts Ash through emotionally. The lovenox is a shot. 2 per day. I have been told they sting like fire and leave nasty little bruises. I have also been told the needle is small and only goes under the skin not to the muscle. The stick is not that bad, but the burn from the medicine is. The emotional turmoil it is going to put Ashley Kate and her mommy through is not going to be pretty. The Cumidin is a pill that will be crushed and sent into her J-tube. Not so bad, but getting the right amount of drug in her system can be tricky leading to more lab sticks more often, so in light of that knowledge the team here would like us allow them to place a port or a broviac line for the frequent draws. Whats so wrong with that? We all know that Ash has spent the majority of her life with a central line. We are comfortable caring for it, dressing it, and drawing blood from it. The problem is that it puts her at risk for a line infection, which always has the potential of being life threatining. She has only ever had one of them, but it wasn't a good thing. Pretty dangerous. The next issue with placing the line is that she will have to go into surgery and with the anti-coagulants (heparin)that have been running since Thursday she is at risk for bleeding with no ability to clot off during the procedure. What in the world should we do? I just don't know and this is the part of parenting Ashley that is the most difficult. Loving her is easy, taking care of her has actually become a "piece of cake", deciding when and what and where to intervene for her medically is hard and it only gets harder and more complex the older she gets.

Dave and I have to decide tonight what direction we would like to go. Knowing that she is only 2 and 1/2 and we are losing veinous access is a frightening place to be in. Without access to her veins we are left with no options for treatment if it ever comes to that. Pretty intimidating! Currently they are holding a place for her in the OR tomorrow afternoon and they plan on turning her feeds off at 4am in hopes that we will decide an attempt at a line placement. Our question is this, "Is that actually the best choice for Ash overall?" or should we endure the shots, dig for veins, and hope if we choose that we won't have to give in and place a line anyway once her "good" vein gives up.

I can't ponder this anymore. I'm just thankful I'm not on my own tonight with a huge decision looming over my head. We're a team and he's on his way to help make the decision, but mostly he's on his way to scoop up a baby gherkin who still has high hopes of becoming a mighty dill someday.

You can't put a price on this. Her eyes, her smile, her face when she realized who it was that was finally with her. How blessed my heart was as I watched her re connect with her dad, her brother, her sister, her nan. She was so happy!

The change of environment was exactly what she needed. She came to life as soon as we arrived. She slept for the first half of the flight, then cried for the second half because she realized she was strapped down and could not pull any of her leads off. The loss of control is not something Ashley handles well(I wonder where she gets that? ha, ha!) Anyway, once we got off the plane and she could reach the blood pressure cuff, pulse ox, lead wires, etc. She was a happy traveler. The flight crew as always was great with her. I truly feel blessed to have been connected with this group of people. They are amazing and always make difficult, frightening situations a little less stressful for us. I so appreciate them.

She was so happy yesterday that she actually tolerated people. That in itself is amazing! The doctors, nurses, didn't matter who, could approach, come in the room, take infortmation, etc. Ash just sat and played through it all. Such a blessing!

As soon as her nan arrived things really got fun. They laughed and played and danced and sang. What a healing time it was for my mom's heart who has struggled with our absence this time. She and Ash are great playmates and I know nan missed hanging out on the palet with Ash. So last night was great fun. Ash knew exactly who she was and they picked right up where they left off with itsy bitsy spider, patty cake, and all her toys. That was fun to see.

Late last night Dave and the kids arrived after the Tarheels lost in a fierce battle trying to get to the finals of the tournament. I heard it was a great game, and although we would have loved for them to win the loss allowed the family to arrive in Shreveport 2 hours sooner than if they had gone on to the championship game. All I can say is that this little girl LOVES her daddy. Even though she was exhausted after her long day she lit up and enjoyed touching his head(her favorite thing to do), holding him, loving on him, and listening to him talk.

Blake and Al looked wonderful to me! I have missed them so much and although they were stinky from playing ball, and sun burned, and exhausted I couldn't have enjoyed them anymore than I did. Honestly, I wish you knew our kids and how great they really are. I am so proud of them. We talked and talked and talked until it was finally time for them to drive back to Texas. They are going on a little trip to my sister's for their spring break and needed to get out early this morning for the drive. Dave stayed the night here in Shreveport with us. It was the best thing that could have happened for us. We snuggled up on the couch here in Ash's room and it was so great. Dave left this morning at 6 to drive home, shower, and be in the office. The best thing about being here is that he gets to come back tonight, and the next night, and the next! Yeah us!

Ash looks great! Her swelling is down this morning. She is up, dressed, bow in place, and playing in the crib. We are forming a plan about what to do with the line, the clot, the blood thinners, etc., but once we have it in place they feel as though we may be going home very, very soon. Possibly this week! I'm so happy I can't stand it.

When I know more about what is happening with her care I will share, but I knew wanted to be sure and let you know that we are here, we are safe, we are happy, we are BLESSED! Thank you so much for your prayers for our baby pickle. We love you guys. Trish

We (Dad, Blake & Allie) just made it to Shreveport. It is so great to see Ash and Mom/Trish. I am sure she will blog more later after we catch up some.

DAVE

I just got a call that they are on the ground in Shreveport.

Wooohooooooo....

OK, with the title I am definitely showing my age. We may not have the Island right now, but the Fantasy is coming true today.

I just got the call I have been waiting for. The plane is approved and will be on its way shortly.

It is going to be a great day!

DAVE

The whole story is a treasure that I hold deep inside of my heart. Dave and I guard it carefully and share it so rarely. Its beautiful and when I feel the prompting of the Father to share it I myself gets chills as I recall the AMAZING things He has done in her life. Very few people have learned of it. Some people who work in the hospitals in our town think they know, but the pieces they were present for are such a small part of the whole. They really have no idea who she is and how she came to be.

Tonight I shared. Not sure why, but it came tumbling out of me. The funny thing is that as I sit here and ponder the details of it inside of my own heart I find that I am the one who was blessed by the telling of it. To rehearse the events of those early days gives me chills and reminds just how BIG God truly is. How exciting it is to be allowed to be a part of Ashley's story.

I have no idea if I will ever feel the prompting of God to make her story public. The portions that have been recorded in this journal are such a small part of the whole. Perhaps someday He will grant me the peace, the courage, and the opportunity to tell it. If not, then I am content to have it recorded in my own memory and in my own heart so that I may share it with my daughter. Maybe she will be the one to make it public?

Anyway, as I held this miracle close to my chest tonight I concentrated on the beat of our hearts. How amazing it was to feel them both beating together. Not because we are able to make them beat, but because the One who created us both and gave us to each other was orchestrating them. It was one of the most beautiful moments of my life. Almost musical. Oh, how I love this child! Holding her close to me for the first time in more than 5 weeks brought such healing to my heart. She relaxed upon me and closed her eyes, but still patted this mommy's shoulder with her tiny hands. Just letting me know that she loves me just as much as I love her.

God has been so incredibly good to me. Goodnight my friends. Trish

P.S. Ashley Kate is off of all oxygen support and breathing comfortably on her own! That makes me smile.

Several have asked "once you are transfered to the new hospital how far will it be from home?"

Let me put it this way:


O (Omaha NE)










































L (Longview, TX) S (Shreveport, LA)



729 miles Longview - Omaha
65.2 miles Longview - Shreveport


...as you can see I think it will be a lot easier for me to run over and see the girls after work when the get to the new hospital. I can't wait!!

Goodnight,

DAVE

...as the pieces to this whole puzzle begin to come together. Very interesting.

On rounds the surgeon just nodded his head and said, "Its all beginning to make sense." Then he went on to explain to me how the blood clot related to or contributed to that pesky plural effusion on the left side of Ash that just didn't want to dry up. Something about the lymphatic system, the thoracic duct, and the path they send the fluid in the body through that has a lot to do with the left vein that is now sporting a healthy sized blood clot. I called Dave and repeated the info to him and he too agree that its all beginning to make sense now. Glad they both understand cause I'm still a little in the dark about the explanation,but the surgeon said in his opinion there is no reason not continue with the transfer tomorrow and that part made me smile. Still hoping theres a bed available!

Al's team lost their game this morning and now Dave, Al, and Chelsea(Allie's best friend) are on their way to Blake's tournament over in Lufkin. Blake's happy cause he's playing ball. Dave's happy cause he gets to go watch. Al's happy cause her and Chelsea are together, and I'm happy just knowing all that. Ash and I are hanging out waiting on the phone call that lets us know they threw the first pitch. Then we will sit and listen by phone to the play by play for the rest of the afternoon. We are starting to pack a few things and have begun to organize, but are a little hesitant to be too happy or too busy with it because it could fall through. It was originally scheduled for today, but didn't happen so if tomorrow doesn't happen I will be disappointed but not too surprised. The first calls will be made at 7a.m to see if there is a spot for her and then the crew will be in the air by 9:30 and arrive in Omaha to pick us up about 12. I really, really hope this can take place cause that means that Ash will be smiling at her daddy's face by tomorrow evening. I'm so excited to see how she recovers once the family is around. I just think its going to make her feel better.

I would just like to add: So life's not perfect for us, but it sure is blessed. I think the important thing about our struggles is that we have learned to be thankful. Our hearts are more grateful than they have ever been and even on the hard days we won't forget that God is still good. No matter what other's may say. We make mistakes, but know we are forgiven. You are too. Thats what is so incredible about our God. He loves us in spite of ourselves. The good, the bad, and the ugly! Have a great day.

Sorry for the title and sorry if I offend anyone, but that is my new mantra.

First of all, Ash woke up with eyes! Yeah! She can see again this morning and her swelling is going down again. Why it comes and goes in such extremes is puzzling to all of us, but as long as she is ok while her body learns to adjust and compensate then we will just ride this out. She had a bath this morning and got dressed for the first time in 3 days. She is playing and watching movies, and allowed me to hold her a little bit. I am so thankful.

Now to the title of my post. I have to vent here or else I will vent all over this person who has been incredibly rude and unkind. I have lived in Omaha at this hospital for 8 of the last 14 months(Jan.07, Feb.07, 1'2 of Mar.07, Sept.07, Oct.07, Nov.07, Dec. o7 Feb. 08, 1/2 of Mar.08) . Never have I been intentionally treated rude or unkind by any of the staff until now, and I don't appreciate it. So the deal is this. The nurses are ordering lunch out today. They do this a lot. I usually spend most of my time here in the PICU and most of them are my friends. When they order they poke their heads in and say, "Trish would you like to order today?" and I either say yes or no. It is a very kind and thoughtful thing to do because they realize I have no car here and that the cafeteria gets very old. So now we live on the general pediatric floor. Something new for us and our nurse being very thoughtful said they were all ordering from Chilis today would I like to. I said yes and the "man"(I could think of a lot more things to call him) said no he would not pick up my order along with theirs. "Are you kidding me?" I asked. I can't believe he won't. I'm paying for it. Its being called into the exact same location. He or his friend will be picking up food for everyone else and bringing right back here to the exact place that I am. "I'm not ordering food for any families." was his answer. Unbelievable! Not that I don't get to eat Chilis. Who really cares about that. The fact that someone would be so rude and so unkind is the part that really irritates me!

Now that I have vented I am going to try really hard to stay inside of my room and not go out there and ask what his problem is(like I would really be tough enough to do that anyway). This whole thing just settles in my mind that yes mean people in this world really do suck! and I don't like them very much. I see no reason to be unkind to anyone and there is never an excuse to be rude especially to someone you don't even know.

Anyway, we are still hoping for our transfer tomorrow. If there is a bed available the hospital will take us. If not we will continue to sit here in Omaha. We should be there by mid afternoon. So lets pray that all the other kids in Shreveport get well really, really fast and they all get to go home to their mommies and daddies so that Ashley Kate might get closer to hers. Just a thought. Thanks for letting me blow off a little steam.

Ashley Kate lays in her hospital bed just like she has so many nights before. Our routine is the same. Vitals were taken, meds have been given, pjs are on and now she tries to drift off to sleep as she watches the images of her as a newborn baby in the NICU at Medical City. The images bring me to tears each and every night. Our tiny baby girl in our arms at last.

The words to the song Baby of Mine(originally off the Dumbo movie) play over and over as we both eventually drift off to sleep. She never grows tired of this. Its the same every night. When she hears the music she knows its time to rest.


She struggles tonight. The swelling of her face is now worse than I have ever seen it. I know she feels the pressure because she bangs her head with her fists and pulls out her hair. It breaks my heart to see her this way. Her eyes barely open from the weight of her fluid filled eyelids. As I softly rubbed her head I could feel the pockets of fluid across her forehead and it scared me. Knowing the blood is "stuck" there and not returning to the heart adequately is so frightening. She is pretty miserable tonight. Her blood pressure is up from all of it and she can't seem to shake the need for oxygen. Her body is far too sore for me to hold her. I tried and she growled and growled in her hoarse little voice. She pulls at her central line as her neck has swelled around it making it more uncomfortable than usual. I just pray for sleep. When she sleeps I imagine that she escapes through her dreams to happier times and places. Maybe she goes home when she closes her eyes. Perhaps she is on Blake's bed as he reads or maybe she is being carried outside on Allie's hip. She probably giggles to herself as she remembers how silly her daddy is at night when he plays with her. I wonder if she remembers the ocean? The sand? She went to the top of the mountains in Colorado last summer and looked out across the world. It was really cool that day and she was feeling pretty good. Maybe she hears the sounds of the waterfall as she and I stood on the bridge and watched Blake and Allie and Daddy climb up to it. Where ever she goes I know it must bring her happiness because I usually see a smile creep across her face. I love to watch her sleep. She is so beautiful and I love her so very much.

As difficult as it is for us to be away from home for such long periods of time I would rather be here with her than have to be somewhere without her. The good days are so close to coming back. Her respiratory failure is gone, the pneumonia has cleared, the plural effusion is under control. Now we battle against a clot. A clot that crept up just as we were seeing the light at the end of all of this. I don't know why this happened. I don't know why any of this has happened. I just have to keep reminding myself that I know the one who does. He still loves her. And me. Even though it feels as we have been abandoned I know He loves us.

The heparin has finally reached a therapeutic level and I am hoping it begins to do its job. Quickly would be my prayer. I would love to see her eyes again tomorrow. We will draw more clotting factors at eleven then perhaps she might be allowed to dream until morning comes. I sure hope some of those dreams I imagine for this baby of mine will come true. Blake's bed. Allie's hip. The beach. The mountains. It all sounds so good.

Thank you for being here today. I know the last couple have been rough and I know it shows as we attempt to share our hearts with you. Some days you just become weary and you struggle with you circumstances. Strength will come again I am sure. Love you guys. Trish

I am going to try and explain what the latest development in Ashley Kate's transplant journey is. This whole blood clot issue.

I just spent a good amount of time with the vascular surgeon and he did a wonderful job at helping me to know exactly what was found, how to treat, and what risks we are having to face. I will forever be grateful to those doctors who take the time to help us know what we are up against. He even drew me a picture so that I might know what I was "picturing" in my head was correct. We went over the images from yesterdays SVC gram and he would say this vein is open and flowing, this one is not, this one works a little, this one does not. It was so helpful to have the actual images and knowledge of what is still viable and what is not. So what I know is that Ashley's right internal jugular vein is shot. No longer does blood flow through it and never will it again. Its gone. If you remember the purple line that was placed back in November? This is more than likely the culprit. It was too big and it destroyed her right jugular access. Her right sub clavian veins are open and blood is flowing although the were not able to navigate through them enough to place a more permanent line. This was the first hour and half of yesterday's surgery and knowing what I know now it is a huge blessing that they were unsucessful. Moving over to the left side of her neck and chest. The left jugular vein is open and blood flows through it. Since the "shut down" of her right jugular the left has been compensating for it and all blood return from her brain, face, and head was running through it. She currently has a very nasty, temporary triple lumen central line placed in her left sub clavian vein. This vein is where we have a problem. It was discovered in yesterday's procedure that a large blood clot(2 1/2 cm) had formed around the catheter(the central line) occluding return blood flow from her face. This is not good or happy news for us. Blood clots are dangerous and because of the danger of this clot the temporary line cannot be removed and replaced with a more permanent line. If they remove this line which they almost did yesterday the clot will be free to travel. Potentially into her lung resulting in her death. So what do we do? We have to live with the risk of line infection and sepsis with this triple lumen until we can dissolve the clot enough to safely remove the line. The current course of treatment is a heparin drip. Heparin is a blood thinner. It in itself carries risks, but we have no options. Once the blood is thin enough for the clot to begin breaking down then the line can be removed. How long will this take? No one knows. For know we are planning to be admitted for a few more weeks. Before discharge a transition will have to made to from the drip to daily shots. Twice a day. For three months. I need to stop talking about this part now because the thought of this is where I start to become angry.

So the formation of a blood clot around central lines and the loss of access to any of the 6 sites a person has for line placement is fairly common. It happens to lots of people. Adults and kids. The swelling of her face and head are not common which caused nuero surgery to consult with us this morning. Basically they have no idea why this has happened other than the loss of the ability to compensate for the lack of the right jugular vein. They wanted to be sure that she was not losing blood to her brain and we are to be on alert to look for things such as seizures, stroke, loss of consciousness etc. At this time we see none of these things and Dave and I are not going to entertain those ideas unless it happens. Her swellling is already getting better and we expect that is because of the heparin she has already received.

The main risk to Ash at this time is infection leading to rejection. It is truly no different than it has always been. We just have this whole other blood clot issue that will keep us hospitalized for a while longer. Where are we going to be hospitalized becomes the next question? After much discussion with vascular and neuro surgeons we have decided that the flight and the transfer will pose no greater risk to Ashley Kate and so we will be transferring sometime on Sunday. We hope. We were supposed to go tomorrow, but they called back and said they can't take her until Sunday. The biggest obstacle we will face is if Ash becomes septic and slips into rejection due to a central line infection. We had really hoped for a more secure, permanent, single lumen line for Ashley to transfer with. It isn't possible, so we now have to deal with three lumens(that means ways to access her line) and try to keep those infection free. That is where I come in. I allow NO ONE to touch her line other than myself. That does not mean that she won't get an infection. It just means that I know it is being cleaned well before entry and that the fewer hands on it the better. Please pray that I will be able to effectively portray this to our new nurses in our other hospital. The other fear that we have with this temporary line is that Ashley Kate is quite capable of removing it herself(which she has done multiple times before) and in that case we are in danger of the blood clot moving down into her lungs or up toward her brain. Again, we don't want to dwell on that.

If you are still with me on this post then I congratulate you because that is a whole lot of information that you may not want or need. I just wanted to try and explain for the several people who had asked what was going on. Overall Ash is doing better today as long as we don't touch her. They tried 11 times(thats how many holes I found) to place an IV in the OR yesterday. She is beaten and bruised everywhere. She has two new wounds. One on each side of her neck. One looks pretty good, the other is still a little weepy and yucky. I am allowing her to remain flat on her back today. Not holding her or making her sit up to play because her chest is so, so sore from all the digging around in her veins yesterday. She is actually watching a movie and playing as I type.

So our hope is a med flight out of here on Sunday. Admission to Sutton Children's hospital at Shumpert in Shreveport LA. Resolution of the blood clot issue. Maintain her infection free status. Removal of this line. Adjustment to daily shots. Return to our little yellow house to begin to live again. This is our hope, still knowing that with Ashley Kate's transplant journey things could change at any moment. Its realizing this and learning to really live during the in between times is what we are trying to master. Thanks so much for praying for us. She still has a little ways to go, but I believe she will get there. Home. Another day closer, right?

Have you ever felt as though the weight of the entire world was resting upon you? I mean not just said it, but really physically felt the pressure of the world on top of you? I may not no what it means to have the entire world and all of its problems pressing me, but I can assure you that my world, the part that Ashley Kate lives in, feels as though it may crush me. I am having a very difficult time keeping myself from being squashed underneath it all. This morning I could feel my burden growing heavier and heavier as my disappointment turned to anger. I don't get angry very often. Its not something that really happens to us that much. I don't think I've ever even seen Dave get angry, but this morning my tears turned angry. What am I angry about? I don't really know. I'm just mad. I'm hurt. I'm disappointed. Angry is the best way I know to describe what I am feeling.

So please remind me that "His yoke is easy and His burden is light." I know that, but try and make me feel that today and I would say to you ,"Good luck". There are days when it is just plain hard and yesterday was one of them and today may prove to be another. Two in a row just doesn't seem ok to me. I want to scream at somebody to "Give her a break!", but who would listen? I can't really say that I'm angry with God. It goes against everything that I believe I am supposed to feel towards Him, but can I tell you because I already told Him that I AM disappointed? I really, really am. Not just about this blod clot issue, but about a lot of things.

Loving someone and wanting them to be happy shouldn't be this difficult. It shouldn't hurt this bad. What is up with that? I don't get it. At least not today.

All over the world today mothers and fathers are sitting in hospitals just like the one I am in today watching their children hurt. I'm nothing special. Just another mom who wants to give their kid things that they will never be able to. There are even those who will hold their children, who will kiss their tiny faces, and touch their hands for the very last time today. What I am doing and what I am watching take place in my little ones life is not different or more special or more unfair than what they are doing. It's just that today it has made me angry. Not just angry for us but for all of them too. Each and every family who is struggling with their child's illness, their child's imperfect body, and their child's mortality is just as valid as we are. So why do I think or hope or pray or expect it to be any different or to get any better for our Ashley? I have no idea. I just keep this little part tucked in the back of my heart that someday life will get easier for her and its that little piece that I hide inside of me that makes each set back more difficult to handle.

I'm really sorry this post is so ugly and that my heart seems so ugly today. I have tried to stay away from the journal and had hoped Dave could post again today until I worked this all out, but he is working and can't. Am I still grateful? Of course. Thankful? Yes. A believer in my faith? It hasn't changed. Do I hurt so bad that I am now angry about all that happens to my daughter? Yes. For today anyway.

Are we transferring? We haven't made a final decision. Will it put her in jeopardy? No one can be sure. Will she remain out of jeopardy and safe if we stay here? Again, no one can be sure. Either way good or bad things could happen. So am I pressed with the weight of the world this morning as I try to make decisions that could potentially change the course of her life? Yes. I am being crushed by them.

Please forgive me for my attitude and the condition of my heart today.

...15 year anniversary

...happy memories

...700 miles of separation

...hard day for us

...hardest anniversary ever

...harder day for Ash

...unsuccessful surgery

...large blood clot causing swelling in head

...to dangerous for surgery

...wishing I could take her pain

...thankful for her Mom

...praying for peace for Trish

...loving them both

...try to decrease blood clot with heparin

...another blood transfusion

...swelling in head is a bit better

...not sure why

...hoping this doesn't prevent her from coming closer to home, but thinking it may

...transplant life is REALLY hard

...thankful for her transplant life

...thankful for donor

...thankful for donors family

...thankful for another day

...ready for her to get out and "live life"

...don't take my health for granted

...appreciate the body God has given me

...will always love this life and "live life" knowing God blessed me

...loving Trish, Blake, Allie, Ashley and all our extended family

...another page in Ashley's Story

...to bummed to write a real blog

...missing my girls

...thanking you for your prayers

...thanking God for his protection of the littlest pickle

...Goodnight

DAVE

2:00 went down to surgery
3:00 waiting / consent paperwork etc.
4:00 they took her into surgery

5:30 nothing has been accomplished yet, they are just trying to place a line and haven't been able to

they plan to attempt a veinoplasty on her left side to open the blocked vein. They have put her on a ventilator which is not where she needs to be. We remain hopeful that she will not come out of surgery on a vent. This would be a step in the wrong direction and could prevent her transfer closer to home.

Prayer Request: We ask that you be with us in prayer that Ash will come out of surgery with better draining veins, the fluid in her head would drain, they will successfully place a central line, Ash won't be on a vent when she comes out. We pray the result of this procedure will be a transfer to Shreveport or possibly even home. Please pray with us.

Trish will update when Ash gets back to her room.

DAVE

Ashley Kate has a swollen face. A really, big alien looking, freak like face. That is really hard for this mommy to type because I love her "normal" face. Unfortunately it disappeared about 48+hours ago. The first 24 she looked like Popeye. Literally. Cheeks, squinting eye, wad of spinach tucked away. The next 24 we had hoped for her to wake up "normal" but instead she traded her Popeye look for a real "Pop Eyed" look. Both eyes appeared to be popping out of their sockets from the swelling. This morning she has the right eye open and the left eye winking.

This afternoon at 3:00pm the vascular surgeon who examined her yesterday scheduled a SVC gram. I think that stands for a Superior Vena Cava Venogram. Which means we will send a dye into her line and follow it under interventional radiology to see where it flows, if it goes slow, or if it stops. We think there is possible damage from scar tissue causing the return flow or drainage of blood back from her head into her vena cava to be sluggish. There is also a possibility of a blood clot. So what do we do? First of all we have this test performed to give us more information. Then we decide from there. Can we remove this line? Use some heparin in it to keep it from clotting off? Insert a balloon or a stint(this is the extreme and we don't plan on going there, but it is a possibility)? Will she lose access to 4 of her 6 sites due to what we find? There are all questions that we need to figure out before we can transfer.

At this time we are still planning to go. We just don't know when. We are filling up her tank. Currently she is receiving 150mls of blood. Then we will chase it with some lasix. Her weight is up quite a bit from the swelling and we need to pull some of it off. Hopefully it will help so we don't run into more respiratory issues. She is still requiring 1/2 of a liter of oxygen to keep her saturations up, but we think this may due to the swelling and the pressure in her neck and face. The good news is that she is sitting up today and peeking out from underneath her swollen eyelids to play. She is growling like a pirate at anyone who tries to touch her or talk to her and I actually find it a little amusing.

As soon as I have the results from this test I will let everyone know. Your prayers for our little pickle are very much appreciated today. We are so close to arriving a mere 45 minutes away from our front door and from seeing Dave, Blake, and Al. Hopefully the transfer will remain a possibility. Hope you guys have a great day.

Dave,

I woke early this morning to care for Ashley Kate and my heart stung just a little as I realized that we were not going to be together. 15 years in this partnership is something I was so looking forward to celebrating. Today was going to be special and I was hoping to show you just how much you are appreciated and loved. Then as the tears started to well up I realized just how together we ARE today. Maybe not logistically, but more importantly in these ways:

Together we have grown up. From 18 year old babies who were determined to say "I do" to the middle aged "kids" we are now. Remember the look on our parents faces the night we told them we were planning on doing this? I can't imagine getting to this place in my life without you.

Together we are growing old, and contrary to what one may think about aging it really is quite fun since we are doing it together.

Together we are dreaming. Not just dreaming, but dreaming big for our lives. It is so rewarding as we watch them begin to come true.

Together we are building a business. A business that serves our community, that truly cares for our patients, and that points to Jesus in all that you do inside that clinic. I am so proud to be your partner in this endeavor and to see the amazing way that you light up as you achieve individual goals with each of the families we are blessed to care for. I am so glad we are doing this together.

Together we became parents. Not just any parents, but parents to 3 of the best kids in the world. What a JOY it is to be parenting them together with you. You truly are the most incredible father I have ever seen.

Together we had a son. Look at him! I could have never imagined how great he would make our life together. I remember the look on your face the first time I saw you hold him. I knew we were going to do a great job with him because the three of us would be together. I am so proud that he is growing up to be just like you. His character is a reflection of your heart and that heart reflects Christ. Thank you so much for making him with me. If we had never gotten together I would have never known the joy of having him for my son. I love you for this!

Together we are raising a young lady. Her beauty astounds me. Her humor reminds me of you every day. Her stubborn streak shines my reflection right back at me and I can't help but smile because although I know it is difficult on some days it still excites me because I know it will help her become an amazing woman. Who would have thought that together we could create someone as wonderful as Allison Brooke?

Together we chose our sweet Ashley Kate. Together we prayed for this child. Our miracle baby. Together we cried night after night as she lay in a hospital bed never knowing how it felt to be touched by her mommy's hands or kissed on her forehead by her daddy. Together we sought to make her ours. Together we went to places I never knew existed. Together we sat in that car and prayed for God to show us where to search. Together we walked into that courthouse. Together we tiptoed into that NICU and fell in love. Together we rocked, and sang, and prayed for our daughter. Together we brought her home. Together we chose to give her more time. We handed her to that surgeon in hopes of having a little more time with this baby girl. God is so good. He has given us 2 and 1/2 years. Together we gave her back to Him. Together we seek to give her all that she deserves to have and so much more. Together our goal is for this child we prayed for to be happy and oh, she is so, so happy. You love her like I have never seen and the joy in her eyes when you come into the room melts my heart and causes me to love this life of ours together more and more. Thank you for being together with me on this one. Our lives have been so blessed.

Together we serve our God. So many fun memories of kids camp, of children's church, of service. I look forward to having those opportunities with you again. Together we are raising our children to be the hands and feet of Jesus to a lost and hurting world. Just look at the way they love their sister! No boundaries in their hearts.

Together we cheer them on. From baseball fields to soccer games to hospital rooms. The five of us are a team and what fun we have together. Did you ever imagine how good it would feel to watch him hit it over for the first time? What about seeing her score those goals last weekend? Remember the feeling we had the first time Ashley Kate said, "My momma" with the sweetest voice we had ever heard? I look forward to listening for that voice to return someday. We will be there together as she learns to speak and I long to hear her say, "Daddy".

Together we laugh. We cry. We pray. We hurt. We live. 15 years of being together and it just gets better and better and better. I love you Dave. Everyday for the last 15 years and everyday for the next 15 and the next 15 and the next 15 right into eternity. We will go there together and what a joy it will be to know that we have chosen to follow Jesus together. There is no other that I have ever loved as much as I love you. If our son grows to be a man like his father, and our daughters are blessed to marry a man like their daddy then I will sit back and thank God for blessing our lives and for allowing us to "grow up "together.

I'm looking forward to seeing you again. To laughing with you some more. To watching you tuck our sweet Ashley Kate into her crib. To holding your hand as I fall asleep on our first night back home. How I wish for that night to come sooner rather than later. Happy Anniversary Dave, even though we aren't together its nice to know that we REALLY are. Life is better for me because we are together. I love you.

We are all together on this. We will be transporting closer to home later this week. Looks like it will be on Friday. We had planned on going today, but believe it or not Dave and I put a hold on it. Before you yell,"WHAT? This is exactly what you wanted to happen!" Please understand that our decisions ALWAYS have and ALWAYS will be based on what we feel is in Ashley's best interest.

Yesterday Ash woke up with a swollen face. The left side of her face was so swollen her eye would not open. Concerning? Yes. Why? Again no one knew. We had hoped it would decrease by this morning and all be well to travel. Instead of decreasing it increased and spread across to her right side as well. This morning both eyes were swollen shut. We are suspecting some sort of problem with the central line that is in her left subclavian. She has no swelling in any other parts of her body. Only from the neck up making the line highly suspicious. Dave and I don't feel like presenting her to our new team in Shreveport while she looks like this is. We don't feel like it is in her best interest or really fair to them so we are staying here to investigate for a couple more days to make sure she is not in any danger. We are currently waiting on a team from vascular surgery to come and evaluate her appearance and her swelling. It is possible that we may need to remove this line and place another before transporting by air ambulance to Shreveport.

Our team here in Omaha understands our position and we understand theirs. We are all working together to decide what is in the best interest of Ashley Kate. I have said many times before and I will continue to say we trust them. They know her best. We will have a lifetime relationship with them and we do not in any way want to sever that tie. Our position remains that if she is out of danger of losing her grafts and this remains a time issue until she is restored to where she was before her episode of respiratory distress then we would like to do our waiting closer to home. They are not opposing that decision. Their position is they would like to be in control of managing her until she is back to that stability just in case something turns south again. I understand, but disagree that we need to stay here for a "just in case". God has used these doctors repeatedly to work in Ashley's life and I am confident that He will continue to use them to care for her in her future. Dave and I remain firm in our position that Ashley's family relationships are imperative to her healing and if we can help her maintain those then that is what we feel we should do. Now that she is no longer critical. Our time here in Omaha is far from over. I realize it must be hard to understand our relationship with this team. Again I want to point out that you can disagree with someone, but still have a high level of trust and respect for them. That is where we are. Not severing ties, just taking her closer to home until she is ready to move back into our little yellow house. If things go wrong we will NOT hesitate to turn around and bring her right back to UNMC with our team of transplant doctors.

Thank you for your prayers for us. These days are very, very trying and stressful. It is not easy and I am afraid that I am not very good at pretending it is. Each day with Ashley Kate is a blessing and I would fight my battles over and over again for her because I fully believe she is worth every tear, every struggle, every conflict. I will not stop being her mom. Thats the job I was lucky enough to be given and I am loving every, single moment of it. The hard times are hard and they hurt. They hurt more than my words could ever describe, but the good times are more blessed and more joyous than I have ever known. I am beginning to believe that you have to experience pain in order to really understand the experience of joy. Nothing comes without sacrifice. Just ask Jesus. He was the ultimate sacrifice for us, but can you just imagine the joy He feels as He watches us turn to Him and watches us grow in our relationship with the Father because He was willing to be that sacrifice. More than my heart can comprehend.

Again, thank you for loving our tiny gherkin and enduring all the ups and downs that it entails. You are more than a blessing to us.

P.S. Kris, The camo arrived and even I have to admit that it is really cute. I would love to post a picture for you, but I will have to wait until her face returns to its normal size. Thank you for sending it. You made me smile.

Dee, thank you for your thoughtfulness and the package. Again you have blessed me and I am so grateful for our friendship. You are a blessing.

Rose, I thought that I had posted about Ash's wonderful quilts you sent, but if I failed to say thank you please forgive me for that. I love them as does she and she plays on them daily at home. It was such a thoughtful gift. Thank You.

...Believe? Now is the time to decide. Do we just think it or say it or do we really, honestly, truly, to the depths of our hearts believe in Him? This is the question Dave and I just asked each other.

Is He who He says He is? and Do I believe that?

Is He the One who holds her life in His hands? or does someone else?

Does He already know the day, the moment, the hour of her last breath?

I have to decide right here and now what I truly believe. I think I know. Never mind. I KNOW THAT I KNOW.

I cannot live a life of fear. I cannot parent Ashley Kate from a position of fear. I cannot be scared into making decisions for her. This is the time for us to step out on faith. We did it once before. Remember? I do. August 5,2005. Again on September 26, 2006. We stepped out on faith not knowing if we were equipped but willing to be used to love this child and do the very best we could for her. We stepped out on faith not knowing if she would wake up, survive, or ever breathe another breath. Again, today it is time to decide. Do we have enough faith to do what we feel is in the best interest of our child and transfer her away from this hospital and into another one? If we go, we must be able to live with the consequences no matter what they are. If we go, we must believe that whatever happens that we did the very best we could while trying to parent this precious little girl. If we go, we must believe that God is still God in Omaha, NE or Shreveport LA.

Life. Its what I dream of for my sweet baby. Life. Its what I long to give her, but have no power to sustain it. Life. Not just living, but really living. Laughing. Loving. Being loved. There is more to this life than sitting in a hospital room. If she must grow up in one shouldn't it be one where she can be surrounded by all who love her? There is not one of us who would not give our lives for her. My precious son asked if his 10 year old liver would fit into his baby sister so that she might have 10 years like he had. That is love.

Ashley Kate will always be fragile. She will always struggle with germs and illness and hospital admissions, but on those days that she does not I want her to live. Are her organs at risk? Yes and No. Currently she is not experiencing any difficulty with any of them, but at any time she could. Could a cold send her into rejection? Yes. Could strep throat put her bowel at risk? Yes. We know this and we knew it the day that we took the risk to give her life through another child's organs. It cannot stop us from allowing her to live it.

We will be the first to rush her back. We will be the first to say its time to go. We will be the first to sell everything we own, give up everything, to provide for her transportation back if need be, but we will also be the first to acknowledge that she is never out from under His care. We will be the first to say, "You alone are God and you alone are in control of her life and ours. We trust You. We believe in You."

This hospital will hold us accountable if we made the wrong decision. The world will hold us accountable if we choose to go the wrong direction. We will hold ourselves accountable if she loses because of our choice. He will hold us accountable and to be honest He is the only one that really matters.

Do we or do we not believe? Today we decided that no matter what we DO believe.

Literally. Ashley's main issue today is psychosis. Lack of sleep. Going crazy from being locked up for so long. I think I am too.

In rounds the main topic was trying to restore her mental health. I know it sounds crazy, but this is were we are. She has only slept 7 of the last 48 hours. She is so exhausted she is requiring a small amount of oxygen support. Not because of her respiratory distress, but because of her mental distress. They have given her a sleeping medication in hopes of restoring her to some what "normal". Her chest x-rays have shown no increase in the plural effusion and that is a huge blessing. So far it looks as though her body is handling the fluid.

Again we expressed our desire to transfer. Again we were told, "We just want to watch her for a couple more days." This is the part that is making me crazy.

Ashley has not seen Blake or Allie or her grandparents in over 30 days. She has not seen the sunshine or felt fresh air for more than 30 days. She needs this transfer. Desperately. It is beginning to affect her mental health and the team agreed with us this morning, but they still want to watch her and try to get her to behaving "normally".

I don't know what is going to happen from here. We will continue to monitor her fluid status. They agree that it could be done in any hospital in America, but they still want to be the ones to do it. Dave has tried to call and speak with the surgeon but to date has not received a phone call back. He did share our position and concerns with 2 coordinators by phone yesterday and they said they aren't sure if the doctor will have the time to speak with him. To be completely honest we find that unacceptable! Our local doctors always have the time to speak with us. The doctors in Shreveport returned Dave's call last week at 9pm. No matter what your schedule as a physician you can find the time(even after hours) to return calls. Even when Dave is too busy to take calls because of his patient load he makes it a priority to return calls after hours or the next day with an apology for the delay. We know first hand that the time could be found to speak with him. They don't want to find the time.

Before anything else happens to Ash we need to get closer to home. Her white count is back to normal and her fevers are gone leading us all to believe it was more than likely the placement of the chest tube causing her an infection. Today we are praying for her to come back off of oxygen and to be able to go outside this afternoon. We are hoping for Ash to "return" and for her psychosis not to. We know that God can work all of this out. We haven't forgotten any of that, but it doesn't make the waiting any easier.

I still can't believe that we are remaining here in order to treat her "mental" condition. That knowledge is causing me to have a mental issue myself. Just another crazy day in the life of transplant.

Edited: A knock at the door to tell me we are going to start adding a micro lipid chain of fats back into Ashley's tube feeds. We need to see if the chylus returns. We will know by watching to see if she develops more fluid into her chest. If that happens then we will have to begin giving her lipids twice a week through and IV. She will probably be on this no fat formula for the next 3 months. If we don't get some type of fat into her diet then things will not go well for her.

I sit here stunned thinking we had fixed this issue only to find out we have the potential of huge issues hanging over our heads. If this doesn't work I don't know what we will do. We need to work on this closer to our home. I just can't believe that God planned for me to raise Ashley Kate on my own in this hospital room in Omaha, NE. At some point we have to bring her closer to her family. If she has to grow up in a hospital it HAS to be one close enough for her to maintain a relationship with her dad, her brother, and her sister. My heart hurts!

...Sleep. Thankfully we got some of it this afternoon.

...The sound of Allison Brooke's sweet Texas draw when she answers our phone and says, "Hi Mommy."

...Nurses who go out of their way to lend you a helping hand.

...Goodnight Moon and the joy it puts into Ashley Kate's eyes.

...Blake. Everything about this child. I am so proud to be his mom.

...Soft Blankets to cover my sweet baby in.

...Kindness. It goes so far in this world.

...Jesus.

...The laughter shared between Dave and I.

...This blog and all those who continue to pray, to comment, to encourage.

...Our donor and family.

...Healthy livers. Functioning Bowels and extra pancreases(she has two you know!)

...Flip flops. Nothing beats 'em.

...A baseball team made up of 12 year old Tarheels.

...Creativity and Beauty. Allie B. has them both threaded throughout her 10 year old person.

...Chili on rainy nights and my mom who fixed it for my family.(wish we were there with you guys!)

...Dave's hands. Always has been my absolute favorite part of him.

...God's heart. How He loves us, forgives us, and provided for us.

...Yankee Candles. Ummmm.Ummmm. Can't find a better smelling butter cream.

...My sisters.

...A brush against my cheek from my dad that says all it needs to say and more.

...Diet Coke and frozen burritos(I know it sounds disguisting, but they have grown on me).

...Home comings. The one we will soon have in Texas and the one I look forward to in Heaven where my sweet Ashley Kate's broken body will be fully healed and she will never hurt again.

...Motherhood.

...Vacations(There is a beach in Mexico calling our names).

...Free laundry machines.

...giggles.

...My life. It is really amazing.

Sweet Ashley Kate finally fell asleep at 7:20 this morning only to be awakened at 8:30 when respiratory knocked on the door. She is so exhausted today and we are hoping for a nice long nap.

Things happen quickly around here when Ash takes control of her own situation. Why such a rough night? The fever? An infection? Withdrawal? Dehydration? No. No. No. and No. The answer was discovered soon after her bath and change of clothes this morning. Pain.

Ash had been trying to communicate to the world that she was in pain. Hurting for hours through the night. Unknown to me or to any of her nurses she had finished pulling her own chest tube from her plural space to the point of insertion only through her chest wall and is sat in the tissue for the night. The nurse practioner said it must have been burning the whole time. As soon as we removed are very soaked dressing we saw that it was only inserted through the skin maybe a few centimeters. Immediately she began to calm and allowed me to hold her and soothe her. I can't explain who it felt to know that I did nothing to ease her pain or discomfort. I had no idea what had happened, but it doesn't remove the feeling of being the worst mom in the world from my heart. Knowing that she was trying to tell us she was hurting and me not figuring out why is unacceptable. My heart is so broken for her. No wonder all she could do was swing at me and try to hit me all night.

So now the word I received in rounds was this, "We'll just wait and see. Either she will fly or she will fail. Its probable that she got an infection at the sight of insertion and this was the cause of her high white count and fever. It probably also caused the high increase in her fluid output from the sight. So lets just see what she does." Thats it. No mention of us transferring. Just a look in the eyes that told me not to discuss it and to be honest I am so tired from last night that I can't even go there today. Her dressings continue to be soaked and we are constantly changing them around the sight from the fluid that is "gushing" out of the wound. I don't exaggerate when I use that word. It is not a trickle a drop or a small puddle. It is gushing and you can hear it as it builds up and empties out of her chest. Very scary.

Please pray with me that this is exactly what needed to happen for Ashley's body to begin healing. I am hopeful that the fluid will now decrease and she will begin to improve so much so that we can pack our bags sometime this week. Things will either go that direction or they will go the other. If they go the other she is at great risk for respiratory distress once again and will require a chest tube. So this could be good or it could be bad. She really needs a lot of prayer today.


Her address here in Omaha is this:

Ashley Adams
Nebraska Medical Center
University Tower
Patient Mail Room 6470
PO Box 6159
Omaha, NE 68106-0159


Her address in Texas is:

Ashley Adams
101 B Woodbine Place
Longview TX 75601

This is our office and anything sent there will be brought to Ash. Thanks Melanie, I am really tired!

Ash and I are still up. Its 4:30am and she is just miserable. Unhappy. Not content with her current situation or surroundings. She spiked a fever to go along with her high white count and we are currently running one of two anit biotics that were started yesterday. She is nauseated and shakey. Extemely agitated. She growls and swings her arms at me and everything around her. She just doesn't feel well this morning. Hopefully whatever bug has invaded will be squished with the two anti biotics.

Dave and I believe she is starting to go a little "crazy" from being cooped up in these rooms for so long. I really do think it is starting to affect her behavior. She isn't happy. We are trying to figure out how to give her some type of change of scenery. We discussed taking walks in the stroller or in a wagon in the middle of the night(while wearing her masks) just to get her out of the room. There wouldn't be any "traffic" in the halls and the elevators would be empty greatly reducing her risks of exposure to anything else that is lurking. Since we are awake anyway, I think this might be something we will attempt to see if it helps her. She reaches for the door and waves "bye-bye" and wants to go somewhere. Her favorite part of our days at home is when we get out to pick up the kids from school. She smiles and claps all the way down the walk as we approach the car. She loves to just "go". She doesn't care where as long she gets to be out of the house.

I really hope our days here are coming to an end(although this new "whatever" she has isn't encouraging me much). I think that seeing Dave and the kids would be so good for Ashley Kate. She misses them so much. She is doing well with her chest tube staying clamped. She seems to be breathing comfortably and her oxygen sats are really good. Its been 24 hours now and I am hoping to see improvement in her x-ray this morning.

Her pump is beeping letting me know the med is done so I will close and go flush off her line. I was really hoping she would drift off to sleep while it ran, but it didn't happen. She is crying, shaking, rolling around, and just all over miserable. Here goes another attempt at holding her in hopes she might allow me to rock her to sleep. Talk to you guys when the sun is up.

PS So many have been asking about the address to where we are and to be honest I was hoping not to be here long enough to have things sent, but I will get it today and post for you. Thanks for wanting to bless us. Trish

I have received several comments asking "where we are?" and "if everything is ok?" I am wondering if some are not able to see our blog posts anymore or if they are just wanting me to write more frequently. I'm not sure which is the case, but I usually give my first update after daily rounds. Most days rounds occur between 12:30 and 1:00 on the this floor. On the weekends they can occur a couple of hours later, and on days when the doctors are in surgery then it may not take place until late afternoon. I say all of that to let you know why the times of my posts are not always consistent. I like to post after rounds so that I can share the "plan" for the day with you. If things happen in between then I always post those as well and sometimes I post when I can't sleep or if I have words and thoughts that just seem to spill out of me. In a lot of ways this blog has become great therapy for me allowing me not to keep things bottled up inside and giving me the opportunity to request prayers for our family. Anyway, I assure you that if things were not ok that I would let you know as quickly as possible and I thank you for your concern. I share this because I have seen more than the usual comments like this the last couple of days.

So how is Ash today? Well... let me tell you that she is definitely 2. We almost lost her chest tube last night, because she decided enough was enough, but once we checked the x-ray it showed that it is still in(just barely) but still there. She pulled the stitch that was holding it and it is now about 3 or 4 inches longer on the outside of her than it is supposed to be. She is refusing to wear a diaper. I hear the velcro on them being pulled constantly and so I have given up . As long as she will agree to sit on them then I am going to quit fighting her over the fastening of them for now. She is up to her old tricks with her ostomy bags and has decided she doesn't want one of those either. Her newest 2 year old behavior is throwing a temper tantrum over cups of water. She wants to "drink" water all day long, but instead of keeping it in her mouth she prefers to spit it out the bottom all the while she continues filling her mouth full. Her clothes are soaked as is her central line dressing multiple times a day. She throws her toys off the bed until I re-fill her cup and she is growling and yelling at me while I am doing it. So how is my little gherkin? She is being all of 2 years old that she can be while sitting in this hospital bed. I know she is bored and frustrated as is her mommy. I know she misses Dave and Blake and Allie. Her eyes light up whenever she hears their voices on the phone. Her new toys have helped to pass the time, but she would love to get outside to see something besides the walls.

Her white count has jumped up today, but she still has no fever. The doctor wants to run some antibiotics today because she still has a central line and she would like to be cautious with it. We have clamped her chest tube and are not allowing it drain. Its kind of a test run to see if she will successfully absorb and breathe off some of the fluid or if it will re-collect causing her more respiratory distress. It has been clamped since 4a.m and so far she seems comfortable and her x-ray actually looked a little better this morning. Hopefully this is a step in the right direction.
She is fussy, grumpy, a little depressed, and in great need of a nap right now. I suppose I will go for now so that I might persuade her to give in and let her eyes close for a while. Thank you for your concern, your prayers, your words, and your time spent on Ashley's story. What a tremendous blessing you all are to us.

I remember well the prayers I prayed. The dreams I dreamed. The things I hoped for. For so many days and nights. For many, many months and years. I just prayed for her. I didn't pray for specifics. I didn't pray for particulars. I didn't pray for race or sex or background or health. I just prayed for this baby that I felt growing inside of my heart. I knew it would have to be God. She would have to come to us from Him and Him alone. There was no money. There was no agency. There was no plan. Except for His. His limitless, perfect plan for our family. How grateful I am that I did not limit His work in our hearts, in our family, and in our lives.

I sat night after night holding her. This tiny 2lb baby girl. 2 hours from home. Sitting in a recliner in a NICU. Loving this child. This tiny, amazing, miracle child who was handed to me. My love for her had no limits. I would rock her all night and dream of the life we would have once she came home to us. I would stare into her face. It was so tiny and so beautiful. I was so incredibly grateful that she was ours. Nothing else mattered. There were no limits to who or what she could be. Say what you like about our tiny little one, I placed no limits on her. "It will be a long road." "Your setting yourselves up for a broken heart." "You need to really think and consider what you are taking on." How could I not say yes? How could I pray and plead for this child and then say, "Oh, but not this one Lord. This is not the one I want." I couldn't say that to Him. I couldn't say that about her. I knew instantly from the moment I answered the phone that this was the child we prayed for. I did not limit God. I did not ask Him to work inside my parameters.

Looking back over the amazing days of her life I can say with everything in me that I am so thankful that I have set no limits. If I had tried to limit the Father and this gift He had prepared for me I would have missed out on so many precious moments. So many days filled with joy like I have never known. So many nights of rocking and singing to this little girl who stole our hearts. So many smiles. So many giggles. So many victories. So many blessings. So many good things that only she brings to our home.

There are hard days. This is a long road. We have moments when we feel as though we won't make it to the next. Even among all of this I can still say that our joy outweighs our pain. Her smile melts away our tears. The lessons learned have made each day worth it. The memories made are the sweetest I possess. When we remove the limitations from what we will allow God to do in our lives He far exceeds our expectations. Just look at our baby. Look deep into her eyes and know that there are no limits to what God is going to do in her life and in the hearts of those that love her.

I am so blessed.

...and Blake is doing this...





...While Al is doing this...


...and Ashley Kate is doing this...



I can't tell you how much I wish we were closer to home so that none of our children had to do any of these things without at least one of us with them. If you asked any of them if they minded they would be the first to tell you that they don't, but it still breaks my heart for them.

Blake and Al need their mom, and Ash needs her dad. We all need to be close enough to be together.

Blake traveled with friends again today so that neither of his sisters had to be without a parent. Even at 12 he is willing to sacrifice so that they do not have to be the ones who go without. I miss this young man so very much. Al scored 2 goals this afternoon and her team ended up tying the game. All I have heard from Blake's end so far is that he is hitting well and made some great plays at second base. He should be playing in his second game right now.

Please join us in praying that we might be given the opportunity to transfer closer to home. It is truly our hearts desire and if there is any way possible that it might be in His will for our family then we pray that it will happen.

Ashley Kate has put out more than 300ccs of fluid since this morning at 6a.m. No hopes of it slowing down anytime soon and until it does we sit and do nothing but wait. Her cough seems to be acting up a lot today but she has only thrown up once. I wish someone knew what to do for her. A new set of eyes and opinions on the vomiting issue would be great. I hope we have the chance to get them.

Thanks so much for all your encouragements and your prayers. As always knowing how busy the weekends are back home in Texas make them even slower here in Omaha. Hope you guys have a blessed day. Trish

Ash and I have decided that we are BORED. We brought a handful of diaper bag toys and we aren't entertained by them anymore. She loves her books, but you can only look at the same pictures for so long before you slam the cover closed and decide you have had enough. So...we are sending our nurse on a shopping spree tonight(shhh...don't tell her daddy cause we have toys running out our ears in our little yellow house). I don't know what we will end up with, but I'm pretty sure a new copy of goodnight moon and brown bear, brown bear will be in her basket. We are requesting noise making, music singing, light lighting up kinds of toys and I hope Target will have some. Finally, we have something to be excited about today.

It's been a hard day. Disappointing. Discouraging. Frustrating. Lonely. Sad. Any other negative words you can think of? I have tried to fight it off, but the tears seem to be hanging out on the edge of my eyelids and if I think too much then they start to fall. I think our chance of transferring closer to home is gone. Not because of Ash. She actually looks great! Its because the doctor who is coming in service next week has already said, "NO WAY". He hasn't even seen Ash or talked to me, but I am told he is putting his foot down and not allowing her to leave with a chest tube in place. I wish I could tell you that her chest tube would be coming out soon, but let me just say that if she would have had a chamber attached to her this morning she would have filled it up by now. At 4:00 she had put out 210ccs since 6am. I'm not joking. So even though the hospital in Shreveport is ready for her and our flight crew has been contacted and is ready our transplant team is not cooperating. So frustrating! Especially now that we all know we are just waiting it out. Her organs are functioning fine. Her pneumonia is cleared. She has no infections. No virus'. Nothing but some extra fluid pouring out of the "leak" in her chest.

Many people have asked why we don't just "take" Ashley to another hospital. I can't really go into detail about it all, but this is a life time relationship that must be maintained for Ashley's sake and we don't want to sever ties with this team of surgeons. Even though we disagree from time to time they are still the ones God uses to pull Ash through some tough times. We were "warned" not to go against them. Take that however you like. I know what they mean and even though I think it is just a scare tactic I still need to heed their warning. We are in a tough place. Because of needing this relationship, Dave and I are not able to make what we feel are the best decisions for Ashley Kate because once the bridge is burned you can't build it back up. You have no idea how hard it is to have to go along with something you disagree with when it concerns one of your children.

Anyway, enough said about that. Just know that God is going to have to show up and do some big things to get us out of here next week. I believe He can. I just don't know if He will. So I'm asking. It can't hurt to ask Him.

I'm so emotional today. I haven't even been able to type about Blake or Al since pulling the posts written about them early last week. Lets just say that I am really missing two of the most amazing kids in this world and my heart aches to see them. I miss Dave too, and the knowledge that our 15 year anniversary will come and go as if it were just another day is too much for me right now. We had an incredible trip planned to celebrate it and now we won't even be seeing each other. Not the end of the world, just a hard piece of it to swallow today.

So, I hope you can understand why a little retail therapy is on order for us girls here in Omaha. We have exhausted all of our "resources" and are in need of some new entertainment. We can't wait for tonight! She is sleeping right now in order to preserve her energy so we can stay up and play, play, play.


P.S. We received the most beautiful book I have ever seen from some "friends in Florida" and I just wanted you to know that we LOVE it! Thank you so much.

...a need for oxygen...a need for Zofran to control the nausea...a "dumping" of fluid into her drainage bag...a "dumping" of stool output.

...now that I am finished drawing labs and hooking up her oxygen she is happy and smiling at me. As long as I don't touch her.

Who knows what is going on?

I honestly do not know what we are going to do. The vomiting has returned. Full force. It makes NO sense to me. She coughs. She becomes nauseated. She vomits. Not feedings. Only mucus, but we are here in this place, battling back from a major lung injury because of this very thing. She was vomiting, obviously aspirated, and got an aspiration pneumonia and became critically ill. What are we going to do?

No one knows why she is doing it. Again we brought it to the attention of the NP this afternoon. "Flush her g tube. Its probably clogged and then put it to drainage." Ok, been there and done this multiple times and it doesn't work, but we will do it again. And..nothing. We have done it all afternoon and it made no difference. It happened twice yesterday. Four times so far today. I'm am very, very concerned.

How in the world can she not vomit for the past 2o something days and then her cough returns night before last and now the vomiting begins? I was told the best guess was that while she was on the ventilator she was sedated. Then as she came off of it she was still on some medications to help her with the withdraw and now that we have her on hardly any of those calming meds it has fired up again. I have no idea if this really makes sense or not, but thats the "stab" that was made today.

All I know is that vomiting is a symptom. It is not a cause. Your body vomits as a result of something being wrong. It is a way that our bodies communicate letting us know something is up. We NEED to know WHY she is vomiting. What is causing it to happen. This could keep us in Omaha longer than we had hoped. The more it happens the more concerned and the more disappointed I am becoming. I had really hoped it was all behind us and that somehow she wouldn't be doing it anymore since this last episode of illness.

On the other front, the fluid has come to a complete halt. Not ONE, SINGLE drop has exited into the new bag that was attached around 12:30. Highly suspicious. Where is all the fluid going all of a sudden? Is is collecting in the lung and not able to empty anymore? Will she be back in respiratory distress by tomorrow? Has it finally healed and she is really on the road to recovery? If it has then that is more than amazing! She is being watched closely tonight. Lots of listening to those lungs. Keeping a sharp eye on her oxygen saturations. Counting respirations and watching to see if she is "working too hard" as she breathes. So far so good. Nothing out of the ordinary concerning her breathing.

So tonight I sit and wonder why in the world it is back again. What does this mean for Ashley Kate, her recovery, her transfer, her discharge, her life? This pneumonia was very, very serious and things could have gone the other way at any point and we know how blessed we are that she is here. There are days, times, moments when I want to scream, to throw a fit, to demand that things change for her. Then there are moments when I feel nothing but numb. Finally those moments come to me where I sit, surrender and do nothing more than cry for my daughter. I can't heal her. I can't make things better. I can't do anything other than what I already do. I love her. I take care of her. I pray for her. I appreciate her.

I have no idea what happens from this point. I suppose tomorrow may bring an answer?

...and every single day He gives us. What a joy it is to be her mom. I love everything about this little girl, but I especially love the heart He tucked inside of her. I just know it is being prepared to tell her story. Can you imagine all that she will say? I get excited just thinking about it. You gotta love those pink toenails too!

I honestly have no idea what is going on inside of Ashley Kate's chest wall. Obviously there is a leak. I have told them that if you go around poking holes in people and inserting tubes you should expect to have something come out. Problem being that she had over 300 out in the last shift. That is an unbelievable amount.

On rounds this morning we found out that her chest tube has been pulled at some point and has shifted positions. It is still in the general area and so we feel it is safe to leave it and not attempt to replace it. This shift in position leads us to a new theory that perhaps this is why she had such a large amount of fluid come out yesterday. Perhaps it hit a new pocket and decided to empty. It was also decided to remove the chamber (because she had just filled the 8th one and each change over is a risk for infection) and put the tube to drainage just by gravity. So now she has a little bag attached to the tube and we just empty it from the bottom without removing the bag. So far so good because in the last hour she hasn't put out one drop of fluid. Go figure?

The best possible scenario for us would be that her chest stop leaking, not fill back up with fluid, and she be discharged from here to go home early next week. That would be the absolute best! Since we have no idea if that will happen we have gotten everyone on the other ends on board for a transfer and I thought this mornings discussion about it wasn't that bad. They actually said they didn't think we were being unreasonable either. That was such a blessing to hear! I gave the names and numbers of the doctors and flight staff to our coordinator and she was going to call and talk to them about the possibilities. This does not mean they have agreed to let us go, it just means they are going to talk about it. Anyway, I'm going to consider the fact that phone calls are being made a positive thing. Thank you for your continued prayers. Our ultimate goal is to try and make the best possible decision for our baby gherkin. Outside of that nothing else really matters.

She has had a few more episodes of vomiting and that causes me great stress since we have decided it was an aspiration pnuemonia that caused her to become so ill. Her lungs were really damaged, especially the left one, due to the aspiration into them. She will still be healing for many, many weeks to come and the thought that she might do it again is so stressful.

Things on the floor are going really well. I'm not happy about moving her and the exposure she got to a new set of germs and virus', but the girls on this floor are amazing(like always). They have been so understanding of my concerns and I am so thankful for their good attitudes towards Ash and I. We are in a little room at the very end of the hall and no one really comes in or out. We don't even have the cleaning crew entering. I sweep the floors and the nurse takes out the trash for us. I told you they were great! The only person in the room each day is the nurse on shift and she only brings in our meds and listens to Ash a couple of times a day. I am still giving her breathing treatments and CPT for her lungs. Other than that she isn't touched by anyone other than me and it is working out nicely. Ashley is happier and I rest easier knowing the fewer people the better. So in a non ideal situation for us, God is working it out. The staff is great, the room is private, and Ash and I are spending time getting her stronger and stronger for her possible transfer or discharge.

There have been some very stressful moments and conversations the last couple of days. Heavy decisions weigh on our hearts, but I am still looking for the positives. I know that we are not alone here. I know that she is getting better and better each day. I know that the time I have to spend with her one on one is precious, and I know that this time in her life is serving some sort of purpose. I'm not sure what it is, but I believe it to be true. Thank you for your encouraging words. Thank you for your prayers. It has meant so very much to my heart.

Finally, after 29 days in bed she is "up and at'em". With much protest she allowed me to get her out of the bed and place her in this cube for physical therapy. Not a happy camper, and I didn't realize her pants weren't on until I posted the picture, but here she is in all of her debut glory. Our little one is going to bounce back from this. Sweet Ashley just begins to make progress with her therapy at home and then BAM! out of no where we land right back in the hospital and are forced to start again. Even with all of her fussing and protesting I was very proud of her as I watched her kick her legs, bounce her feet up and down and push against the sides of the cube with her arms. She did a really good job. She threw all of her toys across the room, held a book, opened and closed her DVD player, and took lots and lots of drinks to keep her energy up. It may not sound like much, but she was down for a really, really long time on the ventilator this admission and just a week ago she was too weak to hold a small toy much less a book. She is getting stronger every day.

I shared this picture with you so you could also see the chest tube and chamber that she has attatched to her left side. The column on the far right is where the fluid is collected and each chamber holds 200mls(or ccs) of fluid. There are 30ccs in an ounce and Ash has filled 6 chambers to date and the one you see in the picture had just been attached. Can you see the yellow fluid inside of the tube? That is what is coming out of the plural space outside her lung. It just won't stop. There is no plan to make it stop. Nothing that can be done other than waiting it out. With each new chamber I find myself getting a little more discouraged. If this doesn't stop, then we can't be discharged home. If we can't be discharged home then we are forced to stay around all the germs and virus' in the hospital and trying to keep her well is not going to be an easy task. (Even though this cube looks disguisting I assure it was thouroughly cleaned and sanitized before she ever touched it!)

During rounds this afternoon I was told that a 3 month admission would be compeltely reasonable and I should expect it to be that long. Blown away is all I can say aoubt that. This is why we desperately want to transfer closer to home now that Ash is not in a critical state. The request wasn't very well received, but I didn't expect it to be. We are still talking and nothing has been decided. There are things that were said to us that were very disturbing and a little frightening, but I think that was the whole point behind making those statements. Please continue to pray about this situation. Spending 3 months away from home again sends me into a panic and I can't help but cry. A lot. We need God to soften hearts and nothing short of that will make this transfer possible. Our flight crew and our local doctors in Shreveport and Longview are supportive and do not feel we have made an unreasonable request. Just pray, pray, pray. I don't know what else to do.

This morning I approached our nurse practioner with our transfer request. She listened to our reasons and understood our position and said that she would bring it up to the rounding surgeon today. I have no idea if this will happen, but it is what Dave and I would like to have happen.

Our reason for wanting a transfer is simple. We are 700 miles away from home playing a "waiting game". Ashley Kate is no longer considered to be in a critical position. When we transfered out here a month ago tomorrow she was and it was necessary to bring her here in order to protect her life and her organs. She is now stable, on very little to no oxygen(only 1/8 of a liter while she is sleeping), and waiting for her body to stop transferring fluid to her lungs. We could be waiting for several more weeks or months for it to stop. If we could transfer home our support system would be accessible to me allowing me to rest and be a better mommy. It would also allow our family to be reunited. Blake and Allie could spend time with Ash daily as could her daddy. We truly believe this will only aid in her recovery. Omaha, NE is where our transplant team is. It will always be here. We chose this team knowing we would return her for Ashley's entire lifetime whenever she needed care. We love this team of doctors. We respect them. We trust them with Ashley's life. All of that said, we are doing nothing "magical" here during this current time. There is no plan to help Ash get better other than time. Who knows how long that time will last. 2 days? 2 weeks? 2 months? We could be here waiting for her lungs to heal for an indefinite amount of time. We sincerely do not want to burn our bridges or offend or go against any of our teams medical advice. That is why we must carefully balance what we feel is in the best interest of our daughter, of our family, and of our lives. We feel confident that this could be a safe move for Ashley at this time or we would not be requesting it.

So what needs to happen in order to get us back to Shreveport of Longview? A lot! First our team has to agree to let us go(not technically, but ideally). Second we must get our local doctors to accept her. Third we must figure out how to do it. I was warned this morning that insurance does not like to pay for a transfer to a lower care facility. Meaning they would not agree to med flight her for the transfer. On the other hand I was told, "but usually you can get anything accomplished for the right amount of money". Hmmm. What does that mean? We personally don't have unlimited amounts of money sitting around the house. The logistics of a transfer are basically a nightmare for our transplant coordinators and I'm not sure its one they want to have, but again we feel this is best for our family. So we asked today, and we will continue to ask until it happens or until Ashley Kate's "health" has been restored.

Ash continues to "pour" fluid out of her left lung. Why? It remains a mystery to all. Her chest tube is still in place and since last Wednesday evening around 9pm when it was placed she has put out 1200mls, or 40 oz. of fluid. It isn't slowing down. This is why we feel we could be here indefinitely. She has developed a cough since our move upstairs and has vomited a few times. Very concerning to us, but has not gotten a fever. She is not feeling great which is why I have not posted pictures of her yesterday or today. She just feels kind of blah. At this time she has fallen asleep.

Dave and I know we will be spending many months of Ashley's life here in Omaha, and because of that knowledge we would like to spend as much time as possible closer to home and to the family if we can. We feel it is now possible to be admitted to a more local hospital. When the time comes that Ash returns to a critical status, or if her organs are in jeopardy we will be on a plane and headed back for the long haul or however long it is necessary.

As her parents we more than anybody want what is best for Ashley Kate. If we make a wrong decision then we will pay for it forever and our family will never be the same. If our teams of doctors make a wrong decision life goes on for them and they move to the next patient. I mean no dis respect in saying that, its just the way it goes. She is our baby, our daughter, our life. We will do anything it takes to protect her.

If you think about it today any prayers for this request to transfer closer to home would be greatly appreciated. I have no idea how it is going to play out, but I rest in the knowledge that He already does. Have a blessed day. Trish

One of the most difficult parts of having Ashley Kate hospitalized is the feeling that I have lost my job. As I visited with one of the nurse managers yesterday I shared with her how difficult it is to be here, but yet feel as though "they"(whomever that may be) don't really want you here. To be made to feel as though you are in the way or as though you are doing something wrong when in all actuality I am just doing my job.

On different occasions during different hospitalizations I have actually been told things that cause my heart to wonder how in the world things have gotten to this point in the world.

"We're not used to having moms in the room asking lots of questions. We usually just come in and do whatever we want because the parents aren't here. Having to explain things is really different for us."

"Have you ever considered that your presence makes this hard on Ashley? She would probably do better without you in here once she got used to it." (In all honesty I WANTED to hit this lady)

"I would rather be taking care of a patient who is really sick or who needs us to take care of them. Since your doing all the cares for her and all were doing is handing you formula it seems kind of wrong." (By the way, I couldn't agree more with this person. I'm not here because we asked to be.)

So I shared with the manager that I didn't cease being Ashley Kate's mom when she became a patient. Just because she is lying in the hospital bed and not her bed doesn't mean that I take a vacation. The nurses in this hospital and all the others are here to care for patients and I understand that. There are many times when I need their expertise and advise when taking care of Ash, but they are not babysitters. I highly resent them being treated or being expected to be just that. Ashley Kate has a mom and a dad and it is our job to take care of her.

Changing her diaper. Still my job.

Caring for her ostomy. Still my job.

Central line. Still my job.

Drawing her lab work. Still my job.

Giving her bath. Still my job.

Administering meds. Still my job.

Filling feeding pump bags. Still my job.

Checking her temperature and blood pressure. Still my job.

Playing with her. Still my job.(there are actually people who are hired to play with our children while they are in the hospital)

I do all of these things on a daily basis when we are at home because I am her mom. Since when did becoming a patient make those things no longer my job? I don't understand? Who decided mom's are to hand over their responsibilities because their children became ill?

I completely understand that there are children in hospitals without moms or dads. Who have no families to stay with them or help take care of them. I completely understand that there are times when parents are forced to work and are not able to be here with their children. It breaks my heart to see the situations like this(and there are many of them). I thank God that our situation is not like that. I thank Him that Ashley Kate does not have to spend alone in a hospital bed without one of her parents. I know we are blessed and I don't take that for granted.

In a perfect world, in a perfect hospital (if I can pretend that there would be such a thing) the parents would be made to feel as though they were a welcome part of the team. They would be encouraged to continue doing all of the things they would do for their children at home. They would be taught and trained to do the things that may be new in the care for their child. There would be an environment that supported the parents staying in the rooms to care for their children. There would be a partnership between those that were hired by the hospitals and those that keep them in business(meaning the patients and their families). In a perfect world and a perfect hospital.

If you happen to be the parent of a chronically ill child then I know you understand what I am saying. If you don't then you might have a hard time figuring out where this post is going. If you happen to be or have ever been one of our nurses then I would like to say thank you for doing your job and for doing it well. In 2 and 1/2 years the good ones have definitely outweighed the bad ones and I appreciate you for that. For those nurses who have gone the extra mile and become treasured friends of ours, who have cared about our baby on a deeper level than just the 12 hour shift you were assigned, and who have made a difference in our lives I can't say thank you enough. You know who you are and we truly love you for it.

Ten years ago last month as we awaited the birth of our beautiful Allison Brooke, Dave came home from clinic one night with a small gift in his hand. I had already tucked our Blake into his "big boy" bed and had laid down myself waiting for Dave's long day to end.

As soon as he handed me the box I knew it would be something I would love. I didn't need to know what was inside because I recognized the box. Now some of you may be thinking "small box, recognizable, she knew she would love it...must be Tiffany" obviously you don't know me as well as you think you do. That is so not my style. It was even better. James Avery. Small, handcrafted, silver jewelry, each piece designed with meaning and significance. That's more like it. Now were on the same page.

I opened the box and inside of it found not one but two pieces of jewelry. Each cut to look like a small slab( I always kind of pictured it to be like the one the ten commandments were cut into that day on the mountain when God showed up to speak to Moses). The bottoms of the pieces were broken and rigid and fit perfectly together. On the pieces were written these words:

"God be with us together and apart"

Beautiful. Simple. More profound then we could ever have imagined on that day. For years Dave wore his piece around his neck. Never taking it off, and I did the same. I believe the gift was given to me to bring me peace and comfort during those long days while he was working so hard to become an amazing doctor and I was home alone with two small babies. One just toddling and the other to arrive any day.

While I was home for Allie's birthday the other day I stumbled across a small bag of precious momentos that I keep inside one of my drawers. As I opened the bag to peek at its contents this gift tumbled out into my hand. I sat and stared at it. Stunned for a moment as I thought about its significance in our life so many years later. Dave and I had no idea that the child we longed for, prayed for and waited for would keep us apart so many long days and nights, but Someone did know. The Father knew, and I sat on the floor of my closet that day and cried as I realized how perfectly He had prepared our hearts, our home, and our marriage for these long, difficult days.

"He who began a good work in you will be faithful to complete it."

In some ways I can sit so far from home and those whom Ash and I love the most and be thankful for these times. It is because of these times we are forced to spend away from each other that we have learned how valuable and how precious our time spent together is. Dave was so thoughtful the day he chose that gift to remind me that God would be with us while we were forced to be apart, but I don't believe he knew how God was using those times to prepare us for something even bigger. He has been with us, and He continues to be. On the nights when I want more than anything to climb up next to Dave and pour my heart out to him as the tears fall I have had to take those moments and climb up next to our Father and pour my heart out to Him and let my tears fall. I kind of think that's what He has always wanted me to do. Its just taken the frailty of our youngest daughter, the distance from our other children, and the separation in our marriage to bring me to this place. Makes me wish I wasn't quite so hard headed and stubborn!

Anyway, I say all of this to share that God is with us (Dave and I, as we approach the very real possibility of spending our 15 year anniversary 700 miles away from each other) while we are together and while we are apart. Its going to be ok, and I know this because of the work He began in us so many years ago.

for some reason. Tonight as I shared with Dave my disappointment, my frustration, and my longing for home Mr. Rainbows and Daisies said this, "Think of it this way you're one day closer to coming home." I knew I liked him. Not just because he has the ability to make me smile and laugh, but because he has this annoying way of always finding a ray of sunshine and pointing it out to me.

He's right. Although I have been discouraged by the events of today we ARE one day closer to going home then we were yesterday at this time.

Dave, I love ya for making me stop and realize that its going to be alright. This is where our faith has to kick in and we just have to keep reminding ourselves that God is in control of her life. Not us and not them. Its HIM and HIM alone.

Goodnight from these two girls who are stuck in Omaha, but are one day closer to home. Thank you for your prayers and your encouragements.

We are being bumped. Not to co-op, but to the general pediatric floor. I can't describe my frustration. I tried. Hard.

Ash will be a great risk of exposure to germs and virus' on the floor. Especially influenza. I am so frustrated!

I asked why we would not be allowed to return to cooperative care where I am allowed to do all of her care. The answer, "Because we tried and it failed." Thats not good enough for me. Nothing could have predicted the success or failure. It has NOTHING to do with the care that was given or the environment. She was much safer there than on the floor. She just wasn't ready to have her chest tube removed and that wasn't our decision it was theirs.

My request on the floor is this, NO ONE enters her room. NO cleaning crews, no techs, no nurses. It has nothing to do with the nursing care which is absolutely some of the best we have ever had. It has everything to do with EXPOSURE. To what every other patient in every other room has. In coop I get to be her mom. I get to take care of her. I get to be the one who touches her. I get to decide who touches her and who doesn't. I desperately want to take Ash home and we are so close. I do not want her exposed and run the risk of extending her stay or causing her to become very, very sick again. Our surgeon just told me, "I hope your not able to say, "I told you so" to me in a day or two".


This is one of the most difficult parts of our life with Ashley. The part where the decisions for her are taken out of our hands. We are not allowed to say, "No, I disagree with you." "We would rather do it this way." Once we are in patient we are no longer the care givers, the decision makers, the parents. We are merely allowed to sit back and watch everyone else do what they would like to our baby. I won't pretend that this is not hard for me, because IT IS.

Again let me say that I have the highest respect for our doctors and especially our nurses(99.9% of them), but I still disagree with THIS decision.

Our surgeon walked out of our room and said, "Then we will agree to disagree." Not really, because I didn't agree to anything. I'm not being given a choice.

Oh, I know there are those who will take great offense to my frustration in this instance, but I implore you to try, just imagine if you were in my shoes. Let it be your baby for one moment and I'm pretty sure you would share my concerns.

Please pray for Ash's protection. Please pray for her to have the ability to breath without the use of oxygen. Please pray for the fluid to stay out of her lungs and for the chest tube to be removed this very week so that we might find our way home.

...cause I don't understand Your ways.

I've thought a lot about the verse on the side bar today. Your ways are higher than mine. Your thoughts are higher than mine. I shared earlier this week that I don't understand all that happens in Ash's life. I don't think I ever will.

So as she sleeps I cry as I ask the Father if she will always be this fragile? At this time in her life, at this age, she will have no memory of all that has happened, but what do we do as she gets older? With each admission she becomes wiser and wiser. She knows that inside these walls she hurts. How do I help her survive the bad in order to give to her the good? Will she understand that we only wanted to give her the best life possible? Will she know that all we have done and all we have decided was for her good? How will she do this at 4 and 5 and 9 and 10? I think of her life to come and I wonder if she will reach that "stability" we only dream of now? Will she be allowed to just become a little girl without a care in the world? Or will she always know that it is just a matter of time, a matter of days, before we return to where the world inside these walls is filled with pain?

I dream big dreams for Ashley Kate. I dream of carefree days of play in the grass. I dream of afternoons at the pool squealing and splashing. I dream of her running alongside the ocean collecting sea shells with her big sister. I dream of night time rituals that consist of bed time prayers and giggles, not feeding pumps and meds. I dream of crayons and back packs. I dream of simple boo- boos that need nothing more than a kiss, a cookie, and a band aid to fix. I dream of happiness not hurt. Peace and not pain. Smiles and not tears. I dream big for Ashley Kate.

I sit in these halls and I see what is happening. The children come back again and again. Some go home and live full lives, but so many do not. Who will she be? What does He have planned for her life? His ways are higher than mine and I can't see what He is doing? His thoughts are higher than mine and I have no idea what He is thinking?

Her life is precious. Have you seen her smile? Have you ever truly looked into the eyes you see in her photographs? Do you see what we see every day? A sparkle, a twinkle, a life that shines so bright through those amazing eyes? She deserves nothing less than the opportunity to live. Live the life given to her by her Creator. How do I teach her to make the most of it? Show her how to soak up each and every moment never waisting even one? Provide for her every opportunity to be happy? to be at peace? to be carefree as a child should be? How will I do these things when it is so hard for me to understand why she has to endure such pain?

On September 26, 2006 we were given a gift. Not the gift of life as so many people say, but something more precious. We were given time. The gift of time is what transplant is all about. Not a lifetime, but some time. Time to love, to experience, to laugh, to snuggle, to play, to make memories. Dear God, I pray that our time doesn't run out. I pray that it is stretched as far as you will allow and feels as though it is never ending. I pray for happy days and dream filled nights. I pray for more time at home and less time away. I pray for our family to become so united that even these times of separation and distance can not steal from us who we are. I pray for our sweet Ashley Kate and the time You have written down for her. Allow us to make the most of it. All of it.

Wow! 26 days away from home. Before Ashley Kate's birth I had never been away from for more than 9 or 10 days, and that was usually for vacation or something incredibly fun. I wouldn't necessarily consider our trips to Omaha a vacation or even something a little bit fun. I would just say that we have a few good friends here and its nice to visit them for a couple of days every now and then, but 26? I'm not so sure about the length of our visits.

Fun? Definitely not fun for Ash. I was dressing her this morning and noticed all the bruises she has that just don't seem to want to heal. The tops of both her tiny hands are bruised(from attempted, but unsuccessful IV placements). The sides of both her feet(again those nasty IV tries). The right side of her tummy has a nasty little bruise(from the IV they placed while she was in surgery last week). Both rib cage areas are bruised from the chest tube placements. Under her neck and back across her left shoulder have bruised marks from her central line placements. Inside her groin on the left and right sides from the lines originally placed 20 something days ago. Still not healing. A small circular bruise under her chin from a finger of the RT who was bagging her 2 weeks ago today. The insides of both elbows(I'm not really sure what that place is called) from her original IV and arterial line attempts back on Feb. 6th and 7th. Still there. Not healing. If I took her in public today I would probably become highly suspicious to those who had no idea what she had been through. She looks pretty beat up, and like I said, she just doesn't heal as quickly as you or I because of her medications. I wonder what in the world we are going to do once they pull out her central line? With each and every attempt at drawing blood for her lab work she comes away bruised for weeks. Once she is bruised I don't allow them to try in that spot again until she has healed. I can only imagine how painful it must be to stick needles in the middle of a bruise. I can't even stand to bump one of mine.

In case you haven't figure it out, this little pickle is tough. The smallest, yet strongest person I know. Can you believe she still manages to smile and find joy in her life each and every day? That joy must come from the Father. Its the thing I love most about my sweet Ashley Kate. Her joy. She has an amazing spirit that overlooks her obstacles, her struggles, her disabilities and still finds joy. I love her so much. I learn so much from her. On this long, boring, frustrating day here in Omaha so far away from those that we love she has found joy and I can't help but look for mine too. If she's smiling, I'm smiling. If she's clapping, then I'm going to also. I don't know what she is celebrating, but whatever it is I have joined her.

It's been a good day. We got dressed. We put on a big pink bow. We played. Watched Blue. Read books. Cuddled. Ripped out my hair and threw my glasses across the room. Took a long nap. Drank way too many diet cokes and cups of water. Turned down her oxygen requirement. Placed her chest tube on water seal( it has been on suction this whole week, so this is an improvement). Stuck out our tongues to whomever entered our room, and now we are going to kick back and hang out with each other for the night. Still hoping and praying we aren't bumped up to the floor, but perhaps moved back over to co-op tomorrow? It never hurts to ask.

I desperately need to do our laundry, but I'm holding out in hopes of moving closer to the machines again. If it doesn't happen soon I'm going to have to start hiking across the campus to the machines. Not my favorite thing to do while were here!

God's been good to us again. Ash looks better and better every day, and I can't help but feel hopeful. Home could be closer than I thought just a few days ago. Heal lungs heal and breathe pickle breathe! Then we will pack our bags and head for warmer weather. Take care my friends. Trish

My life is good.

I just cuddled up on the bed(so what if its a hospital bed) next to the most precious baby girl in this world. She rubbed my face with her little hands, pulled my hair with her fingers, and threw my glasses on the floor. She wanted to poke her nails in my eyes, but a mom's got to draw the line some where. Besides, I need my eyes so that I might see the miracles of God himself as I stare into her little face. She is so beautiful.

A sleepy little girl who just won't give up lies next to me. Her eyes are so tired, but her hands are so busy. She has removed her diaper about a hundred times tonight. She refuses to keep her pulse oxigination probe on. The chest tube? good thing its stitched into her side and fastened under a tight bandage because she loves to grab it and shake it all around. All of her lead wires are wrapped around her body as if she were hanging the garland on a Christmas tree. I have no idea how she manages to do this. Her eyes sparkle with trouble tonight and I all I can think is how good my life is.

As I type she is watching a DVD her daddy made of her while she was a brand new baby in the NICU at Medical City. The music is beautiful and calming. She loves to see "the" baby being held by her daddy, her mommy, and her Blake and Allie. I sometimes think she is remembering as she watches. I know its crazy, but the look in her eyes just kind of tells me so. Its the perfect way to fall asleep. Surrounded by her family. She is loved. Loved like no other.

Across three or four states, about 700 miles away from this hospital room, Dave and our two older children are tucked into a hotel bed. By now they are dreaming of tomorrow's game, home runs, and the big leagues, but I know that before they closed their eyes their Dad prayed with them. Thanking God for all our blessings, for our family, for their baby sister, and the opportunities He has given to us. Although I long to be with them tonight, my heart finds peace knowing I can trust their dad to take care of them, and even bigger than that my heart knows I can trust God to watch over all three of them. My life is good.

Ashley Kate's day started out a little rough. A high fever. The shakes. A little nausea. Fussiness and a few extra x-rays. By the afternoon it had all passed and she had one of her best days since we were admitted. If you had a chance to view the previous post then you might be able to see just how ornery she ended up being today. What joy my heart felt to see that little girl sit up and cause as much trouble as she could. That tongue of hers stuck out the entire day and no one was safe. She gave it to anyone who came in to "bother" her. I wanted to correct her, but she was just too cute. That combined with her pouty bottom lip was just too much. My life is good.

I'm ready to kick back in "my" recliner and close my eyes. Tomorrow is another day. It was supposed to be the day we were flying home, but for some reason it just wasn't meant to be. I wonder what tomorrow does hold for us here in Omaha? No matte what it is, I know that my life is good because I've been given a front row seat to love on this baby. Goodnight my friends. Take care. Trish

Oh, what a struggle Dave and I have had the last year and a half as we tried to keep our comment section open. Open to all, including anonymous so that anyone could share with us what was on their hearts. We didn't want it to be difficult for those without accounts to drop us a word when it was laid on their hearts. We endured several scolding comments from people who just didn't understand the place we were in. Many of them I ignored, a few of them I defended when they attacked our family, a couple of them hurt my heart so much I thought about ending her story, and this last one caused us to finally close the openness of our comment section.

The amazing thing that has happened this week is that God has taken what someone had tried to harm me with and has used it for HIS good. Kind of like Joseph. What was meant to hurt has only brought an abundance of blessing and I LOVE THAT!

Let me share what has happened. Our comments are now in a mode that allows us to "preview" them. They are not published publicly and we have decided to never publish them publicly. So those of you who have requested that I not share what you have written may rest assured that once we decided to do this we decided to really do this. I will not allow them to be made public. Even though a few have shared how disappointed they are that they can no longer read the encouraging words shared by everyone, we feel this is now the best way to conduct our blog. Now let me share what God is doing with this decision. So many of you have come "out of the woodwork" so to speak and are now freely commenting. You have allowed yourselves to be made known to us. You are leaving long, uplifting, encouraging messages, you are sharing parts of your own stories, sharing your prayer requests, and letting me get to know you. What a blessing you have been to me this week. Dave was so afraid the comments would stop, thus breaking my connection to the "outside" world, but instead the comments have increased. We have had over 600 comments just this week! God is so good! So many that Dave doesn't have enough time in his day to keep up, but let me tell you that I do. I sit and read, glean wisdom, encouragement, and strength from you. I pray over your requests and your stories. What a blessing you have been to me this week. So from the bottom of my heart allow me to thank you for making this change with us. Thank you for continuing to share with me. Thank you for praying for Ashley Kate. Thank you for understanding what we felt was necessary.

One thing I have learned along this journey is that this is a big world we share and that many, many of us are struggling through different types of circumstances. As we struggle along we do not have to do it alone. God has provided a body of believers to lift us up and carry us when we can no longer go it alone. Allow yourselves to be open to those you know are sincere and allow them to minister to you as continue to seek His will and His purpose for you, your family, and your friends throughout your journey. Without your support Dave and I would have crumbled from our brokenness many, many, months ago. God is good. He does care. Not only for our sweet Ashley Kate, but also for you and yours.

P.S. Allie's team lost this morning, but she did a great job anyway. The Tarheels won their first game this morning 14 to 3. Blake pitched the entire game with a 6 pitch first inning and a total of 56 at the end of it. Our Tarheels looked good is what I hear. Oh, how I wish Ash and I were there with them. They play again at 3 this afternoon.