Ashley's Story

She will leave fingerprints all over your heart

3/31/2008

Family Time




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.

3/28/2008

The Important Things in Life

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

Sleep

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

3/27/2008

We've returned

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.

3/26/2008

Hearts Desires

 



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.
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Minute by minute

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

Things I've learned about myself

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

3/25/2008

It warms my heart

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.

Hi...

... 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!


 
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3/24/2008

My Life...

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.

3/23/2008

Conversations

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.

Home Again

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!

3/22/2008

Oh, Yes We DID!

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.

No Go

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

3/21/2008

A day with Daddy

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

3/20/2008

Her body may be...

...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!

" You and I should have a little talk"

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.

3/19/2008

No Access


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.

3/18/2008

This Place ROCKS!!!!

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

Awake

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

Just Hanging Out


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
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3/17/2008

The Best Part About Today is...


...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.
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Priceless!


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
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3/16/2008

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

Closer to home

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

Wooohooooooo....

"De plane! De plane!"

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

3/15/2008

Ashley's Story

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.

How far from home?

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

Interesting...

...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.

Mean People Suck!

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.

3/14/2008

Baby of MIne


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.

Baby mine don't you cry
Baby mine dry your eyes
Rest your head close to my heart never to part
Baby of mine
Little one when you play, don't you mind what they say
Let those eyes sparkle and shine
Never a tear
Baby of mine
If they knew sweet little you
They'd end up loving you too
All those same people who scold you
What they'd give just for the right to hold you
From your head down to your toes
Your not much goodness knows
But your so precious to me
Sweet as can be
Baby of mine


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'll try to explain

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?

Pressed

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.

3/13/2008

Thoughts

...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




Surgery Update

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