Ashley's Story

She will leave fingerprints all over your heart

12/31/2010

Truthful

Ash is on dose number four of her antibiotic this morning. I drew a trough level at 5 this morning and Dave took it up to the hospital for me. We are using a broad spectrum for grand positives right now since there are no sensitivities back yet. So far she continues spiking fevers. She is still bleeding from her ear and now her nose as well. It in combination with her cold is making it tough for her to breath. Other than a higher than normal heart rate and her fever all vital signs are stable. Her oxygen sats are good and blood pressure is fine as well. There was no talk about removal her line. The hope is that whatever is in there will be taken care of with a course of antibiotics. I think she has a had a decent night. She went right to sleep in her bed and has been able to sleep through most of her cares. You can tell she is resting much better here than she has in the last few nights. Her neck and chest are still hurting. She showed her cut down incision to Allie and signed it hurts. It was very sad.

Honesty here in this place, this account, this experience of ours is what you will always find. I realize there are times, days, journal entries, that are hard to read. They are hard to live as well. Nothing that I say is not true. Its the facts. Transplant is not a happily ever after. There is no fairytale ending in the lives of transplant patients. Yes, it can be life saving...unfortunately in the world of small bowel transplants it can also be life ending. Its not something any family enters into lightly. When you find yourself discussing bowel transplants you know its because there is no hope of finding another way. It does not cure the problems or the issues. A friend in the halls of the transplant hospital once looked at me in the eyes on one of Ashley Kate's tougher days and said to me, "Trish, the slogan is Donate Life, thats not exactly true. It should be Donate Time because that is what transplant does for us. It gives us more time with our children." She was two years my veteran in the world of transplant at that time and I learned a great deal from her honesty. She was candid as she let me know I would be returning time and time again fighting for the life of my baby. She knew, she'd been there. Home a few months, hospitalized a few, home again, hospital again. Her sweet little girl has passed and I think of her and her wisdom in this world of hurt often.

Eval is hard. It is emotional. It is sometime brutally honest. Yes, its hard to go through. The first time we were so naive. So naive. It was obvious to us and everyone around that Ashley needed a transplant. We just had no idea the process of deciding if she would be given one until our encounter with the transplant surgeon on the very last day. It was a conversation Dave and I have never forgotten. Never. This eval, we were not naive. We knew we would be asked a series of questions by social workers, psychologists, financial counselors, etc. We also knew we would have a sit down talk with one of the surgeons. The key to all of these meetings is to be truthful, because it is one thing Dave and I are determined to always be, and to also get through it to the point that nothing we said to them would give them reason to deny our daughter. There were lots of questions asked us by social work about what we would change about the transplant experience, how was the family support, etc, etc. I very honestly looked her in the eyes and said, "You don't want to ask us those questions. You really don't want the answers to them. We are here because we believe this group of surgeons to be the best at bowel transplant in the country. It is why we trust them. If not for that, this would not be the hospital we choose to be in."

We trust UNMC with Ashley Kate. It doesn't mean we like or agree with every member on that staff. There are plenty of people who dislike or disagree with us. None of that matters. As we discussed with the surgeon yesterday, neither side is trying to win a popularity contest. We are stuck in an impossible situation. Both sides are being honest with each other and working toward a common goal. What is best for that little girl who is sitting in her chair in that room watching Mater tell McQueen that he "knowed he'd made a good choice". What irony to have that scene in her movie playing as we sat there. We too know that we have made the right choice as far as the team we take our daughter too.

The surgeon was very truthful with us. We were with him as well. That made it a difficult meeting. The truth is not always easy to hear. It hurts. It sucks. At one point I told him, "its not your daughter in that bed, but if it were you would do the exact same things that we do". He nodded his head, having two little girls and a little boy of his own, and said "Your right, buts its NOT one of my girls, its yours." The truth is painful. If they had ever experienced transplant on our side of the fence, as a parent, I believe the program would be different. If they could even imagine it on our side for a moment, I believe the program would be better. Its just the way it is. I am not a surgeon with whom parents place the lives of their most precious children in the care of, and they are not mothers and fathers of critically ill children for whom we would fight to the ends of this earth for. They will never understand my approach and I will never understand theirs. That is ok. It really is. We work together, through the hard times, to achieve a common goal. They see my daughter as a patient, as a number, as a statistic. I see her as SO MUCH MORE. No one wants Ashley Kate to die. They want us to decide if we want to enjoy her remaining days and not put her through this knowing she will die from the lack of nutrition when her access is gone, or do we want to risk a second transplant knowing she may very well die the day after it, or the next or the next. Not trying is a death sentence. Trying gives us a chance, but may very well result in her death. I wish I knew what would give her the most time, the best life, the longest childhood. I just don't have that luxury.

Please don't mistake our accounts of our experience. Truth be told if you read other transplant journals you would find difficult entries to read as well. The word of small bowel transplant is unlike any other transplant experience. As parents we live in a glass box when we are there. You can't have a bad day without an entire staff watching it take place. We endure the most stressful situations in our lives with an audience. I laughed out loud as the psychologist looked at me with a straight face and said, "Do you take time for yourself when your here? Perhaps a bubble bath, a nice book to relax". She has no CLUE what it is like for a mother in those halls of that hospital. We are lucky to get a shower every 2nd or 3rd day! Where would I find a bubble bath? At what point in Ash's transplant recovery would I take the time away from her to go and do that? Seriously. Very respectfully we asked her only one question, "Do you have any children?" To which she replied, "It depends on your definitions of children. I do have two very spoiled dogs." Ummm...not the same thing. No offense to dog lovers, I just ask that you don't compare your animal, your pet, to my daughter.

Do I think they will agree to list Ash? I do. I think they will. I just think they will try. I can't guarantee that, its a feeling I have. Will it be difficult? YES. Much more so than the first time because she has no remaining access. That is the truth and the truth is what was discussed in our meeting yesterday. Those are the reasons for such brutal questions being posed to us. We knew it would be hard and it was. They weren't trying to be cruel, they were being honest. We weren't being disrespectful, we were being honest.


Its a complicated dance to which very few people know the steps. There is no instructor to teach them to you, you learn as you go. We stumble a lot with the hope of leaving that dance floor sooner rather than later with our 5 year old in our arms. God willing that is what will happen for us the second time around. After all, you can pile up a room full of surgeons, psychologists, social workers, etc. etc. and if its not His will then none of this will take place. We know that. Without a doubt.

12/30/2010

I dont know what to say....

Other than the fact that we need to be prayed for. It is taking everything we have inside of us to keep it together today. We have been questioned( and assured there are no right or wrong answers), insulted, tested, and every other thing you could imagine this morning. Or maybe you can't imagine. I am trying so hard. So very hard.

Let me ask you this, how would you answer this question "on a scale of 1-10 what do you think your stress level is at when Ashley goes through the transplant?" Are you serious? Could you give us a little higher number scale to choose from, because I'm pretty sure you would be feeling a little stressed if your daughter was fighting to live too. No right or wrong answer? Then what are you writing on your little pad for? This is ridiculous. ANY parent would feel the effects of stress in this situation. ANY!

I don't know how to do this anymore. I really don't. I'm too old, to experienced in hospital life to kiss you know what anymore, BUT I WILL KEEP DOING IT. That is the simple truth. I'm not intimidated by the protocols, procedures, or poop that goes on here. Sorry. They want us to be honest but it is not possible. At this point in time we have to guard our words and our responses very, very carefully because every word we utter is being picked apart.

Our meeting with the transplant surgeon proved to be the hardest one yet. So difficult to keep my mouth shut when he was obviously, point blank insulting us. It was awful. AWFUL!!! We have to be prepared for the very real possibility of allowing Ashley Kate to die here in Omaha, NE. "Can you live with yourselves for the next 30 years if things go the other way and she dies here. We WONT transfer her out. You have to make the decision that you can live with those facts."

On the plane tonight I stared at the face of my youngest daughter and the tears poured from my eyes. This is the hardest place we have ever been in. The decisions we are being forced to make are tearing out my heart. They keep telling us we have to choose. There is no choosing here. We have been placed in a nightmare of a situation and there is no choice. Our daughters body is so broken that without this transplant her days will be very, very short on this earth. Choice? There is no choosing this. We are doing what ANY parent would do. We are fighting for her life. Fighting for it.

"Do you think you can live here again for a very, very long time? Can you do this again?" What are you asking me? Would I put myself above my Ashley? NEVER IN A MILLION YEARS. I will do whatever I have to do. I don't matter in this situation. Quit asking me these questions. I will keep kissing you know what to whom ever I am told to if it means you will help my daughter live. I will put up with anything you throw at me. I don't want to, but more than what I want is that she deserves to LIVE. If there is any possible chance at living then she deserves that chance.

We are emotionally drained. Completely spent. It feels so good to be home, but all I can do is cry since we got here. Blake and Allie are such great kids. Such amazing young people. To see them show kindness, tenderness, care, concern to their little sister melts my heart. I'm so proud of who they are. Question me about my other kids? Seriously, you have no idea. They are AMAZING and they won't accept anything other than this second transplant for their sister. They know how hard it is when I'm gone. They know how much she hurts. They know the stakes. They also know how great she is and they want her to live so very much. We aren't doing this to them, we are doing this together with them. Blake is adamant that God did NOT give her to us to just quit on her. He is convinced that God chose us for her because He knew we would never stop fighting for her. I think he is right. She deserves so much more than what makes life comfy for all of us. She is the one who does all the hard work. We are just her cheering section.

Its going to be ugly. There is no mistaking those facts. This will be the impossible being made possible for things to turn out the way we hope. I happen to believe in a God who specializes in the impossible.

I say all of this to say this...please pray for us. There are days when I have no words to utter and only tears come as I attempt to pray. We are hurting. We are all so hurt by what is going on at this time. Still we are blessed and its those blessing we try to stay focused on each and every day. Tonight we are tired. Afraid. Unsure. Empty. But...we are home and our sweet Ashley is with us. That is what we are.

Trying

As I sit here in the treatment center with ash I am trying so hard not to feel angry but truth b told I am. I'm so sick of not being listened to. It cant continue to work this way. It won't work like this. We KNEW Ashley needed coverage. We ASKED for it for weeks. Again yesterday we were told no. At 4am the phone rings, surprise... Ash has a line infection. Less than 48 hours after placement. I'm angry!!! We knew going into placement there was a skin infection around the old catheter. What did they think was going to happen? They had to use the exact tract in the hepatic vein. This is why we requested the coverage. Common sense tells u it's going to go inside the tract after removal.

So now I sit in the same old scenario fighting to protect my daughter when it should and could have been avoided.

12/29/2010

Today

Early this morning we woke Ashley Kate, split one of her gowns up the back(to make it easier on her. Anytime she has to put on a hospital gown she begins to panic so I have learned to just cut hers like hospital gowns and she does much better), and stuck a bow in her unbrushed hair. We grabbed dinosaur and took her down to have her echo cardiogram done. She was miserable. It wasn't so much about the echo. I think it was just that she still feels miserable all over. Her neck and chest are still very sore. You can see the beginning of the cut down incision on the right side of her neck. Its still very swollen and bloody. Her face is really swollen and she can't figure out why her eyelids are so heavy. She kept her fingers in her eyes for most of the day. Anytime they do any type of vascular work in her upper torso she pools fluid in her face. It will take a week or so for it to drain because of the occluded veins. After her echo we took her back to the room and allowed her to sleep for most of the day. She continues to spike fevers off and on and has since coming out of surgery yesterday afternoon. We drew cultures this morning.

My consults today were with financial planning, discussing the new costs of transplant, contracts with insurance, and the like. Not much fun. Really its amazing what can be done to save a life, but its even more amazing the cost of those procedures. The going rate for a transplanted liver/bowel combination 1.3 million dollars. The average cost of a year of care for a kiddo like Ashley Kate? About $50,000. Its not fun to have discussions like we had this morning. My next appointment was just as fun. Pharmacy. We sat and discussed the costs of post transplant recovery medications and immunosuppresants for her lifetime. Again, they have to make us aware of how much it all costs in case things are denied by insurance. Ugh, its a lot of chit chat.

Tomorrow the big guns come out. The major consults with transplant surgeons and then our psych eval. Its going to be a day of us asking a lot of questions and them questions us a whole lot. We will also meet with GI (today it was postponed) and social work.

Its quite a process and a huge network that all works together to pull of these transplants. Everybody has a department and a job to get done and we are thankful for all of them because without even one of those departments her life would not be saved.

This week we have been super blessed with the surgeon and transplant coordinator who is on. I'm pretty sure God worked all of that out for us in advance. They are two of the best and two of the nicest on the team to work with. There are lots of hard discussions coming our way tomorrow and its going be made easier just by the people who are sitting down across the table from us. I really am thankful for them.

I wish Ashley Kate was not struggling so much. Its very, very hard to see her smile gone and her twinkling eyes blank. I hate to see tears rolling down her cheeks as she lies so still and tries to feel better. She is the most well behaved little girl. So precious even when she hurts so much. I love her so very much.

We will fly home tomorrow afternoon after the consults. I look forward to taking her home. Home is where she is happiest. Its where she heals the fastest and feels the safest.

We won't be told the teams decision tomorrow. We will return home and wait for a call that shares with us their final determinations. I really feel in my heart that they will in fact re-transplant if an organ match becomes available. I just don't think they will look at her sweet face and see how much she has thrived the last few months and say no. I don't think they will. As scared as I am about the transplant and the recovery I believe God has a plan for my daughter and I just can't accept that its coming to an end. Not now. Not yet. Not ever is my prayer.

12/28/2010

Rough

Ash has been roughed up.

She is bruised and sore. Swollen and hurting. Her tiny face is so swollen from the trauma of placing the line in the manner in which it had to be done. The incision in her neck is bloody, swollen, and bruising. Her right ear has blood dripping from it. Her chest is bruising darker and darker as the hours tick by. She is bleeding into her drain pouch from her g-tube and also from her stoma. Her little body is roughed up.

Her lungs are really junky and her breathing is loud. The cold in conjunction with the breathing tube that was placed has done a number on her. She is weak and exhausted. The smiley girl we knew just two days ago is gone tonight. She hurts. Its the only sign other than water we have seen from her since she woke up in recovery.

Her side is sore from removing the hepatic line. She has 3 wounds in that area. Its bleeding through the dressing. Her new line sight is bleeding through the dressing as well.

She fell asleep on her daddy's chest during our last appointment this afternoon and has been sleeping since. She received two doses of morphine in recovery and one dose of Tylenol around 3pm. We are counting the minutes down as we wait to give her more Tylenol to try and help ease her discomfort.

I'm thankful she can rest. She hurts so much and if she were awake it would be miserable for her. She cries out in her sleep and signs for water, but quickly drifts back off. She doesn't even open her eyes.

We are drawing insane amounts of blood. Really insane! I just drew 30ccs and placed it in tubes to be dropped at the lab tonight. I had already drawn 8ccs this morning. I have another 44ccs to draw before we can leave on Thursday. I can't even believe the amount of blood they are requiring for all of these tests. I'm breaking it up to twice a day hoping to give her body time to recover from the draws. In all they are wanting 82ccs of blood in three days! I have no idea what they will be doing with it all.

Ash has spiked a fever and Im going to give the coordinator a call to see if they will order a culture so I can drop off some more blood. Its a very scary thing for me to see. It was obvious to us that there was a skin infection around the old catheter and when it was removed in the procedure this morning we were told it gushed thick discharge for a little while. The doctor said it wasn't puss, but it was a thick fluidy discharge. The last thing we need is for that infection to have gone into the blood stream today. The first place it will migrate to is the new line and it would be a disaster for us. My stomach is sick about this. It really is. Again today we asked for some sort of antibiotic coverage to protect her from this happening and again they denied our request stating they would wait until she had an active infection brewing that showed signs like fever and such. If you know anything about us in real life then you know we would NEVER request an anti-biotic unless we both felt it was necessary and in Ashley's best interest. We are trying to protect her life and we both agree we should have covered her with something.

My hope is that the fever is just from the trauma and her bodies injuries. We just don't know at this time.

This is truly step one in a very long journey. Ashley Kate has an awful road ahead of her for a very long time. At the end of it our hope and prayer is that we would have made the right decisions for her. We are fighting for her life. Literally. It just hurts so bad to see what we elected to have her endure today as I watch her struggle tonight. My heart is broken knowing it is going to get much, much worse before we can give her back her carefree childhood.

I am exhausted. Emotionally spent. I am so drained from the fear, the anxiety, the stress, the worry, the everything. I'm so sorry I haven't returned calls and texts today. I'm just not up to chatting right now. I'm really not. I appreciate each and every call and each and every message sent. Love and appreciate you guys more than you will ever really know.

GOT IT!!!!

They just came out and let us know that they got something in place that will work for transplant. Its very confusing, but its in there and now we just have to "pass" the rest of this week to be listed.

They had to go up through the hepatic vein and do a cut down in her neck to pull the wire through. Then somehow they bypassed the blockage and put the tip of the catheter in the superior vena cava. Its a lot more detailed than that, but it doesn't matter to us. All we care about is that it is ABOVE the diaphragm and that means we have something that will get her into transplant.

She is in recovery now. Its going to be a very tough day for her, but she's been through much, much worse. We are just waiting to be called back to see our sweet girl.

Thank you so much for praying us through step one of our "new but old" journey.

2 hours

Its been two hours now and no word on her condition. We received a phone call asking us how to replace batteries in her TPN pump and so obviously if you read between the lines they have not yet located a vein above her diaphragm. The plan was to leave the hepatic line in place and continue infusing her fluids through it while they searched.

They did call out in the beginning to let us know that they had her intubated, a peripheral IV secured and that they were starting the veno gram to help locate a possible vein. Since that call its been a few minutes shy of two full hours.

It doesn't look like she will be making it to her next scheduled procedure in the 45 minutes. I didn't think the schedule was going to work when it arrived. I talked to two different coordinators and asked them if they remembered what patient this schedule had been written for. At this point I dont think we will be making the 2pm appointment either.

I just wish we knew something. Either direction, I just wish they would call and give us something to hold on to.

PRAYERS PLEASE


Ashley Kate just left us and she is so, so scared. We listened to her cries outside the operating room doors. My heart is so broken. Broken over the hurt and the pain she is about to endure, but more so for her fear as she looks around at strangers and can't find a face she recognizes.

Her cold has everyone alerted. Anesthesia wanted to cancel, transplant says they have to go ahead and proceed. They wanted Dave and I to know the increased risks of her remaining on the vent now that she has a compromised respiratory status with this cold. Of all the days! I just can't believe she came down with something 24 hours before one of the most critical procedures in her life. I don't understand.

My hope, my prayer is that somehow things would be miraculous in that room behind those closed doors and that a line would easily slip into place for my sweet, precious girl. If only it could happen in that manner.

I sit here in the waiting room unsure of where our lives proceed after this point. Either way I know life is changing and for me that is very, very difficult.

Trying so very hard to be positive and believe that God is indeed in control and that He has not finished with my daughter. I'm trying.

Your prayers at this time, right now in these moments for a miracle would be so appreciated. We need one!

12/27/2010

It seems

...that every thing I touch today is falling apart, not going right, or not happening in the timely manner it needs to. If I could have my way I'd climb back into bed and try and start this day over. My hands are shaking and I'm on the verge of tears over things like dropping a bag of pretzels all over the floor. Its just not a good day.

Selfishly I've kept my big kids here at home today. Not really a good reason to not allow them to spend this day of holiday break hanging out with their friends other than I just want them to be home and in the house with me. I feel so awful for this, but I know I'm leaving and Ashley Kate is too and I have no gaurantees that I am in fact bringing her home Thursday night. I think they get it. Neither have complained about my answers being no when their friends call. Its just so unlike me to be so selfish. Again, its not a good day for me.

I should be packed by now and yet I'm not. The house should be cleaned and in order and yet its not. Its not like I didn't know this trip was coming. I should be showered and just finishing up the last minutes by now and yet I'm not. Instead I'm sitting here struggling not to fall apart and not to let the tears in my eyes fall down my cheeks.

Ash doesn't feel well today. She has slept most of it. Apparently caught a cold over night and is coughing, sneezing, and snotting all over the place. Not ideal conditions for a week of evaluations and procedures. I need her to be happy, thriving, and living life to the fullest this week and yet she's just not up to it. Its not a good day for her either.

I've got 3 hours and counting until I have to walk out our front door and not one item of clothing has been packed for anyone other than Ashley Kate. I have managed to get her medical supplies, TPN, IV fluids, and Omegaven packed along with her clothes, blankets and pillow. That is about all I've accomplished all day long.

I'm dragging my feet, but its not going to make any difference. Whether I'm ready emotionally or literally or not I have to get on that plane tonight with my youngest daughter and life will change. We have to take this next step. We have to find solutions tomorrow. We have to come up with a plan to allow her to keep living. We have to go through this circus all over again and my heart is broken over it. But...broken hearts don't change the facts...they just make it all a little bit harder.

I have to go pack. I have to take care of my responsibilities. Dave got out of bed early this morning and has been working hard all day taking care of his. I've been trying, but it feels as though I'm just walking in circles around this house. Suppose I should walk those circles around my suitcase and perhaps some items might fall in.

Well....She LOVED him!


Ashley Kate knew what she wanted the very moment that toy catalog arrived. She kept that crumpled up piece of paper with her for 2 weeks and showed anyone who came by what she wanted for Christmas. I wasn't so sure she'd really love him, but I bought the hideous creature for her anyway. It was the first gift I bought this year. I think you can tell...she LOVED him! She would stop playing, look into his eyes, and then kiss him just like you see in this picture. She would hug him tight and then open and shut him mouth about a thousand times just so she could listen to him roar.


I wanted to buy her baby dolls and dress up clothes, but my girl would have none of that. Instead she received this ugly, orange t-rex, some cars, a farm, a race track, a Mater blanket, and a bunch of other nonsense that you would have thought had been bought for a 5 year old little boy rather than my sweet princess. Anyway, it was love at first sight and last night as she and I lay awake unable to sleep she blessed with a "concert" of about 5,000 versus of T- roars. It was lovely.

There has been no sleep for Ash or I through the night. She always knows when somethings up. She has cried, and fussed, and yelled, and stayed awake all night long and as morning came it continues. Ash is usually not any of these things. She sleeps all night. Loves to be tucked into her bed. Rarely cries unless hurting. Doesn't yell for anything other than a movie change, and is so rarely fussy I almost forgot she could be. Ashley Kate is happy. 99.9% of the time. I think she knows we are leaving.

I couldn't have slept even if she had. My stomach has been in knots for days. I lay awake Christmas Eve praying for a vein. Praying for ease. For comfort. For success without complication. For help. Last night, the same things. I can't find sleep or rest. I hate to fly. We will be doing that twice this week. I hate to go to UNMC. We will be there for 4 days this week. I hate surgeries, or procedures, or tests, or exams, or evaluations. We will be doing ALL of that to Ashley Kate this week. My beautiful, sweet, happy, silly girl will endure it all. Again. The last two occasions we had line attempts made my girl came out bruised and battered and in a lot of pain. I don't really expect it to go any different tomorrow. Its not "just" a line placement. Its a search. A "creation" of line placement. I assume she will be pretty torn up from it all. If things go the way we need them to and central line is successfully placed above the diaphragm. If not, then she will have wounds on her side from the removal and attempted replacement of her hepatic line. She has two abscesses on the sight and an open wound behind the exit sight now. Its so very sore, and fragile, and dangerous. Either way she will be a mess and I believe either way things go her daddy and I will be a mess too. I'm going to try so very hard to put on my happy face and be the person I need to be, but if I'm being honest I have to admit how scared I am going into this week, this year, this next transplant. Its not a happy face that comes easily to me at this time. Its more like a broken heart.

I wanted to say hello today before life got messy. I've got so much to get done today and I haven't even started packing. I'm trying to figure out how to fly with a weeks worth of TPN, Omegaven, and medical supplies, a car seat, a stroller(her chair is too heavy to for the plane), and then of course our clothes. Its going to take a miracle for me to get it all on that plane. I guess we don't have to take clothes and toiletries if there isn't room. We can always make a run to the store. The other things are non negotiable items in order to care of Ash through the week.

Not sure when I'll be back on. Hopefully tomorrow afternoon with good news. Have a great week.

12/26/2010

Hope Your Holiday...


...was full of excitement...



full of beauty...



and full of joy.

Ours was all of the above and so much more. Experiencing Christmas through the precious innocent eyes of our sweet Ashley Kate has been the best gift of our entire season. We are so, so grateful to have been given this Christmas.

God bless you all and your families tonight. We are holding on to these moments as long as we can knowing that tomorrow our world begins to change once again and come Tuesday morning what we have known will be drastically changed in one way or another. Whispering prayers all through the day and the night for what is to come.

Merry Christmas my friends. Trish

12/23/2010

Its my favorite

This morning as I sit with the fire crackling and sliver bells playing I realize that this is absolutely my FAVORITE time of year. I know I've said that about a thousand times already, but it is so my favorite! I am beyond grateful to be here in our home for the holidays. When I remember how uncertain her every breath was few months back it blows my mind how good God is to us. Ash is here with us for Christmas and she's happy. So very happy. I'm not sure if you noticed in the first photo of my last post but our baby girl was SMILING just a little. When I came across that smile and that face and those eyes I couldn't help but smile right back. It makes me so happy to see JOY written on her every expression.

Today is my precious husbands birthday. I love this guy more than even I can understand so describing it would be pointless. There are no descriptions detailed enough to begin to share what this man is all about and who he is. God blessed me the day I met Dave, and our children were given a gift so terrific the day God made him a father. He is the BEST! He is so excited about driving off on our Christmas adventure tonight. The excitement I hear in his voice and the laughter coming from the kids as we "plan" this holiday is making it so worth the effort. We are going to have so much fun. You won't believe the redneck nicknames they sat around and chose for each one of us yesterday. So absolutely hilarious! I've laughed more this week than I have in a long, long time and I have a feeling its only the beginning of it all.

So...I'm off to finish packing. I decided I wanted to take all our gifts with us to open up around the fire pit Christmas eve and so it fell on my shoulders to "figure it out". If I can get them in the RV with all the other holiday "fixings" then it will be so. Wish me luck.

This life...this family... this holiday...this day...its my favorite:) Merry Christmas guys!

12/22/2010

Glimpses


Happy Holidays from The Adams


Tonight if you could see, if you could catch a glimpse, if only for a moment into my heart you would see and perhaps understand what shaky ground I feel as though I stand upon. There are two sides to my heart at this time in my life.

There is joy and there is pain. There is happiness and there is sadness. There is peace and there is also turmoil. There is understanding and there is confusion. Every day, every where I look I find the two sides to my heart emerging.

At one moment I will feel such joy as I catch a glimpse of our sweet Ashley's eyes as they light up at the sights and sounds of the season and it will be followed with great pain as I wonder if this will be the last season she experiences.


At one moment I will feel so incredibly happy as I catch a glimpse of Blake and Dave through the kitchen window as they battle it out in a game of one on one, and then a heavy sadness will overtake me as I think of how much I'm going to miss that when I go back to Omaha.

At one moment I think I understand His plan and His purpose for all that our Ashley endures as I catch a glimpse of a bigger picture when Ihear the many stories of life changing impact our tiny girl has had on this world, and then I watch her sleep at night and the confusion in my heart is so great as I wonder why her? why now? why at all?

I am finding the cracks in my heart beginning to emerge almost daily as we approach the re-evaluation. I hurt so bad. I try every single day to ignore the pain and be so present in the time we are being blessed with. I found myself frozen Saturday afternoon as I attempted to go into the department store. I could not get out of the car. Out of nowhere these emotions of pain and sadness and anger and hurt and confusion emerged and I sat in my car and cried and cried and cried. I couldn't go in. I couldn't go home. I couldn't do anything but cry.

Just today as I watched the kids play with Ashley Kate emotions again overtook me and I cried tears of happiness, peace, joy, and thanksgiving. Truly my heart was so very grateful to have those moments. I was a complete mess.

My closest friends know how very scared I am. They know the fears that overtake me as I drive through town. There are places that cause great pain and hurt to emerge that I can't predict. Some days I sob so hard as I drive down the streets. I feel as though nothing is sure. The ground underneath my feet is shaking and I'm doing my best to keep standing. A good friend encouraged me to allow myself to fall, to feel it all, to experience the pain rather than trying to ignore it. Although its tempting I know myself and I know that the moment I allow it to take over that I will no longer be the person I am. It will cripple me. It will stop me from being, and doing and feeling. I will lose myself in the hurt and hardship and I will cease to function.

Instead I refuse to waste the time I'm being given. I concentrate on her smile and her joy and her amazing ability to make our family complete. I look in her face and I see all that is precious and priceless. Just one look at those eyes and my heart swells with happiness. She is living life so fully. Each moment so full of joy. I love her so much. So very much.

Enjoy the glimpses into our holiday week so far and see how very good God has been and still is to our family. Even though I'm struggling between the two parts of our life right now I can't deny His goodness and His presence in this place.



Ashley Kate radiates joy


Allie teaches "Santa" how to play Ashley's favorite game


Blake and Ash

12/21/2010

A Texas Style Holiday

LouAnn,
For the record...the house is beautifully decorated, the formal dining table is set with Holiday dishes, the gifts are all wrapped with the necessary coordinating papers and ribbon(really beautiful if I do say so myself and yes Rachels message on face book caused a nervous tick to take over my entire body! Who writes names on the gifts with magic marker...just sayin). The house smells delicious tonight from the Yankee Danish cookie candle that is burning and the carols of course are quietly playing. I haven't completely lost my mind. There will be a set of formal pictures taken as the kids unwrap gifts tomorrow night and then come Thursday evening, true to our Texas roots, we will go "redneck" for the holiday. This whole adventure has us all cracking up and we aren't even there yet! I can't wait to share pics of our holiday adventure once I get to Omaha. Trust me I would never publish them for the world to see!

Just wanted you to know I love ya and wish you the merriest of Christmas'. Look forward to seeing you soon. God bless. Trish


Today' temperature here in our portion of the great state of Texas? 78degrees! ON THE FIRST DAY OF WINTER~ONLY FOUR DAYS TILL CHRISTMAS!

So what do we have planned for the evening? We are going ice skating, in the heat! We also hope to have the kids Christmas photo taken in a life sized snow globe! Yup, thats the way we do it in Texas come December. We just fake like its cold outside. Wish me luck getting the kids to wear sweaters and scarfs in that photo I'm after. I think they are old enough to make it miserable on mom and her attempts at making it look like winter time.

Of course we plan on having Mexican food for dinner because its what you do about 4 out of 7 nights a week if you live in Texas.

Come Christmas morning you won't find us sitting around the family room this year. We decided to change things up a bit and make it a "Christmas to remember". Literally, I think none of us will forget this Christmas. My family who had planned on joining us here in Texas are unable to come so we are packing our little family up in the RV complete with wreath on the front grill and Christmas lights on the roof and driving out to the lake. I have a tree packed in the back, fixings for chicken tacos and fajitas in the fridge(you didnt really expect us to have a traditional meal did you?), and the stockings hung along the cabinetry. It will surely be a memory in the making. Actually the kids are pretty excited about doing something so different. We plan on sitting around the fire pit on Christmas Eve, roasting corn and making smores, and opening gifts from our little shopping adventure game. I gave every member of the family a $20 bill and told them they had to shop for all 5 members of the family out of that $20! Its been hysterical so far.

I also packed a table, linen, and holiday dishes to set up at our site to enjoy Christmas dinner out in nature. I'm super excited about pulling this little redneck Christmas off! My holiday photos will not even resemble a Christmas at my house. I can hear the kids sitting around the table 10 years from now, "remember that Christmas that mom and dad went nuts and took us out to the lake?" Ahhh..yes, I'm already smiling about that.

Hoping your holiday is shaping up to be memorable. Ours sure is!

PS
Cathy, Ashley's outfit came from Gymboree and she is wearing a size 6 now(hard to believe it!). Hoping Annabel is getting stronger each day. Merry Christmas

12/19/2010

Look Who Stopped By...




Santa made an early stop this year.





Ashley Kate was thrilled! She snuggled up on his lap like she'd known him all her life. It was such a precious moment.





Something about him was strangely familiar. It was like she'd seen him before, sat on his lap a time or two, it was just so comfortable to her. Definitely a night we will never forget.

Dave's mom and dad came up with this little plan for Ashley Kate. It was perfect. She wasn't afraid. She wasn't at risk. She was just happy to be playing with her graypa dressed up like Santa. So much fun.




A wonderful Christmas memory.

The mailbox

I remember this spring my sweet Ashley taking some of her very first independent steps with her walker down the walk to the box. It was such a long journey for her to get there. It really was. It had taken her years and years to learn to take those steps and in actual count it took 110 of them. Those 110 tiny steps equaled 10 of Blake's steps. It was at that moment I smiled and told myself "she is going to be fine". Little did I know that mere months later we would be starting over on the journey.

This time of year the mailbox is one of my favorite places to go each day. A little bitter sweet as I walk the walk instead of my sweet Ashley, but still I find happy, holiday messages inside.

Over the Thanksgiving holiday Dave was taking Ash for a walk in her chair along the cul-de-sac at my sisters and as they arrived near the neighbors mailbox Ash began to sign and point to open it up and check the mail. The neighbor was outside and came over to introduce himself. He met our sweet Ashley and as Dave explained to him her signs he invited her to open the box and check for his mail. The box was empty, but it was a very kind gesture and she enjoyed his "hospitality". The next day Ken, my sisters neighbor and Ashley Kate's new best friend, saw Dave outside and let him know that he and his wife had left some "mail" in their box just for Ashley. So sweet. So kind. That afternoon Dave loaded Ash into her chair and away they went to check the mail. Inside the box she discovered two holiday books and two small toys tucked away in that box just for her. An act of kindness we will never forget.

Yesterday I opened our mailbox and inside I found the envelope from UNMC detailing all of the times of each appointment and procedure of our trip. I can't really explain the feeling that came over me as I opened it and read through the list. I can admit that my mood changed. Instantly, and I struggled the rest of the day. It changed me. Not in a good way. I never got a handle on my emotions and they just led to more and more hurt and anger about the whole situation. There are things on that list that made my stomach hurt. Procedures that scare me to death and a few that will be impossible to accomplish. An abdominal ultrasound? really? Have they seen my daughters abdomen? There is not an inch that is NOT covered by a bag, a dressing, a strip of tape. Honestly they will have to remove her ostomy bag, not a good situation for the technician and her central line dressing, not a good situation for her line that should be kept sterile. How in the world do they plan on keeping the stool off the line when both of those dressings have to be removed to perform and abdominal ultrasound? The whole thought makes me cringe. Its going to get interesting. An echo? Really? What for? Its not as if her heart and its function has changed over the last 4 months? What are they looking for? I honestly think some of this is just "protocol" that is done just because its what they do for every candidate. Labs every morning at 7am? in the treatment center? Uh...no. I draw her labs and will be happy to do so from a sleeping baby girl and deliver the blood to the lab like I do every single week. I'm not waking her up, taking her into a waiting room full of sick people at that hour, and allow techs to touch and draw from her only working, very fragile, central line.

You should see the list of appointments they have scheduled for Dave and I. Did you know they put transplant parents through a psych eval? Yup, here we go again. Its hysterical as they sit there and question our ability to cope. I wonder how they would cope in our situation? I remember Dr. B. laughing as he told me in rounds last August, "good luck proving to us that you and your husband are fit parents" "that will be a tough one". I can't believe after working with this team for over 4 years that we have to go through this stuff again. Honestly, we will know first thing Tuesday morning what the rest of the week will go like. If my daughter comes out of procedure without a central line above her diaphragm then we will be leaving. Its that simple. Without that access there will be no need to have her endure the remainder or the week and Dave and I will be in no condition emotionally to pass that stupid psych evaluation. I couldn't hold myself together last night as I informed Dave of this. I cried, I yelled, I shook, I was a mess. REALLY? If the first item on the schedule doesn't go well then there is no need to stay. None.

How did my trip to the mailbox result in all of this? What happened to me? In all honestly I think the fear, the stress, the unknown of all that we have experienced the last few months came tumbling out of me. Everything that I do my best to hold inside came exploding out. I could not or did not handle the contents of that envelope well. I am not handling the knowledge of us leaving a week from tomorrow very well. I don't want to go. I don't want to do this. I don't understand what happened. I don't get it. Yet, here we are...again. Step one of a very, very long journey back to the place we hope to be. Home. For good? For awhile? Forever? I just don't know. I don't know how I'm going to pull myself together next week. I really don't. I am experiencing a lot of hurt, anger, and frustration that I have hidden for a long time. Its not good. Eventually I took that stack of papers and stuffed them back into that envelope. I'm not pulling them out again until after we have a successful line in place to take her to transplant with. If that doesn't happen then I don't need to look at the rest of it ever again. It will be over and my trips to the mailbox can't get happy again. At least for as long as God allows us to keep her.

I'm glad its Sunday. The mail doesn't run today. No trips down the walk wishing my Ashley were walking it with me or dreading envelopes from Nebraska. By Monday I hope to have myself back together and as I open the box I hope to find the "happys' of the season instead.

12/18/2010

Santa is wishing a Merry Christmas to Ashley


Click on Santa to see him wishing Ash a Merry Christmas!

In Search of

This morning Dave and Blake and Ashley Kate are out in search of a battery charger for my Cannon. I am absolutely stumped as to where mine is. Without a charger I have no ability to take pics of my kids this week and next for the Christmas holiday. This is so not an option for me. Its absolutely not acceptable to miss these holiday moments.

I've been in search of amazing things we can do together to make memories and capture something on "film" so we can remember this Christmas. I don't want to talk about it being Ashley's last, but the truth is that this Christmas is so very important to Dave and I. We have a very, very unsure year ahead of us. I just want to make this one last...forever. So we have to come up with a new charger for that camera battery or else I'm off to buy a new camera.

If you have any recommendations that are an absolute do not miss here in East Tx or the Dallas or Shreveport area please let me know. We have every night this week except for Tuesday to go out and do something with our kiddos and I'm always up for something amazing. Let us know what you think we should do.

I am loving this season! Just wish we had some wintery weather to go along with it.

12/17/2010

Up in the Air

We are scheduled to be "up in the air" and on our way toward Omaha in exactly 10 days. However, its all still "up in the air". We have yet to get any travel plans finalized and therefore I have no idea if in fact we are going to make those appointments in Omaha, Nebraska.

Besides the fact that life and death decisions will be made for our sweet Ashley that week its all a little unsettling to not know how we are getting there or if in fact IF we are getting there. Its been a series of miscommunication, misunderstandings, and mistakes made on every one's part, including mine and Dave's. From sending the information to the wrong people, to lost faxes, and missed phone calls. Who knows what is going to happen after all of that nonsense.

Its a 14 hour drive. We are scheduled to be in our office for a full day on Monday the 27th and a half day Friday the 31st. Her appointments are scheduled beginning around 7am Tuesday the 28th and ending Thursday afternoon the 30th. Driving is impossible. There is no way we could make it in time either direction. Commercial flights with 2 bags of IVfluids and one glass bottle of IV fluids, 2backpacks and one wheelchair is not "doable". The TSA has a "ball" when we try and get Ash through the gates. Its just too dangerous, especially with the frail state that her line is in at the moment. We have no idea if the med flights are going to be approved and even if the trip out is approved there is no way to secure approval for the return trip on Thursday evening until after we arrive in Nebraska with no guarantee that it will be granted. The LAST thing that we need to happen is to be stuck over that weekend in Omaha. I honestly just don't know what is going to happen. We may or may not be able to go.

If in fact we do make the trip I have very mixed feelings about how the week is going to play out. First thing on the schedule is a procedure in IR(interventional radiology) to attempt to "create" line placement above her diaphragm. If in fact they find a way then they have been instructed to "go for it". Past experience tells us this could be very difficult for Ashley Kate. Our hope is to keep her out of the hospital and get through this evaluation on an outpatient basis. Its the goal of all involved, but the last time she took a trip to IR she lay on the bed on a ventilator for 4 weeks. Not expected, but in fact the results of the procedure. If they can't find access for Ashley Kate it will no doubt be devastating for us all. The current hepatic line, although functioning, is in bad shape. The skin around the exit site of the catheter has opened up and is actively oozing a mixture of blood and sirus fluid and a creamy discharge. Its frightening! There are no signs of infection presenting themselves and our girl is as happy as she has ever been. Upon discharge last week from Shreveport we had all agreed to begin an IV antibiotic to protect her from an infection beginning until we could get to Omaha. I found out once I was home that our transplant team discontinued those orders stating she could not be on one UNTIL she got an infection. We are all at odds with that decision since our goal is to sustain and protect Ashley Kate's life and an infection in this hepatic line would be disastrous for her. Anyway, the line flushes and draws and infuses and for those things we are very grateful. We are forced to open the dressing up and change it about every 48hours when ideally you don't change central line dressings more than once a week because of the infection risks. It is a sterile procedure and it is very methodical and time consuming with the state of her line at this time. My heart races each and every time we do it knowing the dangers that are there. Needless to say, a line will have to be secured during this trip to Omaha. Whether or not they can place one for transplant or not we have to have a source to "feed" Ashley Kate her IV nutrition. The hepatic line will have to be repaired, secured or replaced while we are there. We are truly at the end of IV support and if these attempts fail we have no answers as to what will take place in the life of our gherkin from that point on.

I have discussed in detail the process that will take place in her body once adequate nutrition is unable to be given and I will tell you that it shook me to my very core last week as I forced myself to ask the questions and sit and listen to the answers. It is not an option and I can't wrap my mind around those days. I pray we are never, ever in that place with our baby although I know that we sit closer to it than we ever have before at this time.

Our hearts are trying to focus on the holiday and not the days after it. I am forcing the fear and the worry to take a back seat to the enjoyment of having my children all together here in our home for Christmas. Ashley Kate makes us laugh every single day. We are all enjoying our time with our girl and there is not a moment that goes by that any of us take for granted with her.

So for today, the trip is "up in the air" and I don't know what will happen. I do know that we have to keep her safe and happy and home for as long as we can and that this trip can not extend itself into the next week. Lots to pray about over the holiday.

12/16/2010

Quick FYI

The screen on my phone decided to go out(again). So this is for my family and close friends and even perhaps our physicians offices. If you are trying to text me, I can't get them. If you are leaving voice mail, I can't get to it. The only thing I can do is answer calls and that only happens when the phone is right with me(which I am trying to remember it as I go throughout the house). My inbox is full, my texts messages are full. I'm not trying to ignore anyone, I just have this silly phone that has been replaced twice and it has once again gone on the blink. Guess Santa may be bringing me a new one? Perhaps a different brand? This one obviously has issues:)

This is why I am not communicating with anyone the last two days. So sorry. You could always do things the old fashioned way and send me an e-mail, but who has time to do that anymore? Otherwise I will try and answer the phone when it allows me to, because its even being a little picky with that function as well.

Have a great day. Ash is sleeping in and I'm trying to make a plan for which direction our day will take us. The only thing I know I'm doing for sure is going to see the most beautiful 12 year old I know play basketball tonight. Other than that its wide open! Love ya. Trish

12/15/2010

Quiet

The house is so quiet. Dave took Allie straight to volleyball practice from basketball. Blake just left for youth group. Ash is sleeping under her christmas tree in the play room. I'm sitting here in the dark, listening to carols play and watching the flame on the candle flicker.

I'd wrap gifts except that I've finished already. I'd do some laundry except that I'm out of laundry soap. I'd cook dinner except there is no one home to eat it. So...I'm enjoying the quiet. Allowing the sights and the smells of our home to infiltrate my heart so deeply. I hope to never forget this time in our lives.

So many thoughts run through my head each day. I wish Ash could stay this way forver. I NEVER want to take her back to Nebraska. I don't want to take this happy, smiley, little girl and put her through the nightmare of transplant again. I don't want to do this. But...more than not wanting to do this again...is not wanting to give her up. Its an impossible situation with even more impossible odds of things turning out the way we hope for them too. When I sit still too long this is what happens. My heart begins to hurt as the possibilities of her future run through my head.

I need to get up and find something to do for the next two hours. I guess I'll go clean a closet or something. Anything to keep my mind from going to the places I try so desperately to avoid. I picked up her new transplant bedding from the embroidery shop this week. It needs to be packed. Funny thing happened...she grew up. Imagine that! Her tiny blankets didn't work anymore so I have replaced them wonderful, soft, monogrammed sheets and blankets for her beds. The one here at home and the ones in the hospitals. Nothing makes me happier than monogrammed blankets:) Dave just doesn't get it, but thats ok. He smiles and nods his head as I oooh and aaaah over her name and initials. Time to fluff then fold them all nice and neatly into her suitcases.

Her New Favorite

Ashley Kate's newest favorite thing to do is dig through her bags. The first thing she requested this morning as I got her out of bed was the red bag hanging in her room. It had not yet been unpacked from our hospital trip last week so it was FULL of fun things for her to get into. Every single day I learn more and more of what she knows and how fully aware of the world around her she actually is. She is always listening, learning, watching, and figuring things out. With all the cares we do for her it is sometimes easy to forget how "5" she actually is. Her mind is able, it is working, it is intelligent(whether or not she ever CHOOSES to stack those stupid blocks on command or not!:)

Here a few photos I was able to capture of her in "action". Enjoy!



First thing she pulled out was a mask. She is actually pretty good at putting them on to let us know she is ready to get out of the house for a while. So funny to see her do this. Just a suddle hint.

This mask is one of ours so it wasn't fitting the way she needed it to. Hers are actually much smaller and don't cover her entire face.

Next item she discovered was her stethoscope. We always leave the house with her bag full of her own supplies. We don't use the same stethoscopes that they use on other patients. She has her own and its only ever touched her. Its funny now because all of her doctors and nurses ask for hers before they examine her. Just one of those things I'm really picky about when it comes to her cares. I just like to be careful and germs can live on anything! Especially stethoscopes that sit around in hospital rooms and offices:)

She's watched a few too many doctors "tap, tap, tap" on it before listening. I had NO idea she had picked this little trick up!



Then she proceeded to place it on her chest and have a little "listen" herself. Without the ear pieces in of course! She cracks me up.


Ok, this BLEW ME AWAY. I have NEVER seen her do this before. Can you tell what it is? Its a syringe. Don't get all crazy on me, its not a sharp. It was a blunt tipped saline syringe that she found in the bottom of her bag. Underneath her dress, in that exact spot, you will find the two lumens of her central line. Yep, my sweet girl new exactly what that saline flush was used for and she took it to the correct spot. I was stunned and so happy that I captured the moment on film. She is SOOOOOOO smart!

In some ways the photos are extremely sad. What 5 year old is so used to medical procedures that she knows how to use all of these items? That is very sad, but on the other hand this is her life and she's in her environment. Its what she knows so its how she chooses to "play". As long as she in her own room, playing on her rug, at her leisure then I'm so ok with it. Its when we are not at home and she is scared and hurting and so very sick that it breaks my heart. Today I just found it to be precious. So precious to watch her show me what she knew.

Last night was a long night for us. Dave and I were both awake most of the night and we were so unsettled. This morning to see her smiling face and her twinkly eyes has been the best "medicine" for us. I'm just so thankful we are here in our home with our girl. So thankful. Thank you for praying for us. We've got many more tough days ahead of us and its beginning to wear on our hearts.

12/14/2010

Sometimes

Sometimes we just need prayers. Tonight is one of those times. We have good days and bad, but try so very hard to concentrate on the good. Truth is Ashley Kate is very fragile and sometimes that scares us. If you would pray for us tonight and over the next few days I would really appreciate it. Honestly, her daddy and I are feeling the weight of her world on our shoulders right now and it's a very heavy, heartbreaking, burden. We are scared and the tears are falling freely tonight. Just one of those days that makes the hurt so very real.

Emerson and Erika

Pray for our friends. Please pray. I don't know what else to do. I feel so helpless. I want make this better for our friends, for us, for any family who lives a life like we do, but yet all I can do is pray. There are no words to make it better, but if you would like to let Erika know you are praying for her sweet girl this morning you can leave a message at cotaforemersonw.com

12/13/2010

I don't feel it

I sit here tonight having just said goodnight to Dave as he retired early because of an early visit to the gym in the morning with Blake. We tag teamed as we do most nights Ashley's cares. It takes us both working together for about an hour to get her TPN prepared, IV fluids hung, and Omegaven infusing. We check the ostomy bag, replacing it most nights, and empty her G-tube drainage. Change her diaper and put her into her p.j.s. Braid her hair if its not already so that we can save as much of it as possible and then tuck that precious girl underneath her covers. Kiss her tiny face goodnight and retrieve her dinosaur from whatever place he last lay. We turn on her music, turn off the lights, and tiptoe out of the room. Its quiet in the house except for those carols coming from her room and the crackling of the fire. I'm in the family room all alone and it feels good to sit for awhile and concentrate on being still. I've been going all day and now that the day is ending its time to enjoy the sights and sounds of the holiday just as I did this morning as the day began. I love this time of year. I just absolutely love it.

I don't feel the pressure so many others talk about. I don't feel stressed out because of the holiday. I don't dread one single task. I don't feel it, and I really don't get it. I just enjoy it. All of it. I enjoy the peace of it. Its the time of year that I get to really feel the peace of God in my heart and in my home. It seems so odd to me that even among all the unknowns of our life right now that I can sit still in this room and stare at our Christmas tree and feel this overwhelming sense of peace. There is something about this time of year and all that accompanies it that brings me such joy and happiness. Its calming to my spirit. It gives me perspective in this crazy life I live. Christmas is undeniably my favorite time and how blessed am I that it comes back to me every single year. Its something I look forward to the moment it passes. What could be stressful about any of this?

I'm ready to close my eyes and allow myself to get lost in remembering the moments of today. Time spent playing with Ashley Kate on the floor of her play room. Sitting in the stands watching my son play high school basketball. Listening to Allie talk and talk and talk about all the silly things her and her BFF did tonight while shopping, and the goings on of her day. Hugging Dave tight as we stood in the middle of this room just moments ago and watching him walk toward our room down the hall. Its been a good day in our home. One filled with peace and laughter and activity and dinosaurs and teenage humor and a little drama to go along with the humor and love and living. I'm grateful for today. Grateful for my family. Grateful for the holiday season. Tomorrow morning I will get to do this all again. How is it that I am this blessed? Our tiny girl lay in the next room dreaming of tomorrow and all that it holds for her. It is such a blessed life.

My friends I hope that you are able to really soak in this holiday season and the peace that it can bring to you. It breaks my heart to hear others who are struggling with the pressures and the stresses of the holidays. It just doesn't have to be that way. Truly it doesn't. If ever there were a time to slow down and focus on what is important in this life it is now. Focus on Christ. On what we've been given because of His birth. Focus on those in your life whom you call family. Focus on your children. Allow the peace that He offers to envelop you and yours. It feels so very good to know that Jesus came to this place for us.

Merry Christmas and good night from our family down here in the great state of Texas. Talk to you in the morning. The fire is calling my name.

Christmas Volumes

One morning early last week Ashley Kate and I ventured out to run a few errands. It was still early and there weren't many people out and about. Most at work, kids obviously in school and so the mall crowd was pretty light. A safe time of day for us to drop in, pick up a couple of gifts and pop back out.

As we walked down the corridor I could see the large tree decorated in the center of the mall and Ashley spotted it too. She began to sign "tree, lights" and I was talking to her about how big the tree was and how high it went. As we got closer we could see the line that had just started to form. Little ones all dressed up and waiting with their eyes sparkling to see the man in the red suit. Like I said, it was early and he had yet to arrive.

We proceeded past the line and into Dillards. I grabbed the two items I needed and did a little bit of extra shopping while I was there. Ash had her dinosaur in hand, her little mask on her face, and two backpacks filled with bags of fluids and IV pumps. She was enjoying the music that was playing and "dancing her dinosaur" back and forth to the sounds of jingle bells. Just a good time for us both. We finished our shopping and went back out the way we had come in.

As we walked past the tree and around to the front of it we signed and talked a little more about the ornaments and the colors. We had no intentions of visiting with the "big guy" knowing that a wait in that line would not be in her best interest. So what happened next took me by surprise, but blessed my heart in such a way that I'm not so sure it wasn't the most precious Christmas memory I have ever experienced.

Apparently as we were looking at the Christmas tree Santa had arrived, settled himself into the large chair and was readying himself for a long day at work. The line began to get excited at his arrival and the photographers were handing out their price lists. Then I noticed the big guy getting back up out of his chair. He left his place and approached my sweet Ashley with a look of kindness across his face. He knelt down in front of her, reached his white gloved hand out and brushed it across her cheek. I could hear her giggle behind her mask. I was taken in by the look in his eyes. They were full of compassion, full of kindness, and it seemed maybe even full of understanding although I could have just imagined the latter. I can't deny that in that moment tears had formed in my eyes as I watched this silent interaction between the "star of the show" and my youngest daughter. There were no words exchanged between the two, but the conversation they were having with one another spoke volumes to the heart of this mommy. He didn't stay long, but he was there long enough to make an impression on my heart. It was a moment that I'm sure my sweet Ashley will have no memory of, but one that I will never forget. As he stood up to leave her he reached down and patted her dinosaur on its back and then patted her on top of her head. I was barely able to get the words out of my mouth, but I choked back the tears and whispered "Merry Christmas" to the gentle man and he nodded his head as he walked back to his place.

I've thought about this interaction with Santa Claus and Ashley a lot over the last few days. I can't quite put into words how very much it meant to me. His kindness was so loud. So loving. So precious. I can't help but think how very much he became the hands and feet of Jesus to us that day. Don't get me wrong. I don't think in anyway that Santa is there representing Christ to the world in that mall, but to me on that day he in some small way did. I could imagine Jesus doing that very same thing as he watched my sweet Ashley so unaware of who He is sitting on the outside of the line that was there forming to meet with Him. I could see him reaching out his hand to touch hers, to brush his fingers across her pink little cheeks and then acknowledging what He already knew was special to her by patting that well loved dino on the back before patting her on top of her head.

I'm not crazy, guys. Really I'm not. I just have this image of Jesus in my mind loving on my sweet girl through the touch of that little old man who chose to put on that well known red suit this year. He didn't have to speak, to say a word, to explain his intentions. His eyes were there speaking the words instead and the message was loud and clear. That simple act meant more to me than the old man will ever know, but Christ knows. He does. He knows what it took to even get her home to be in that mall that morning and He knows if this will be her last Christmas or just one of many more. He knows so much more than I do about her life span and where we are headed.

As I sit here in our family room this morning with my sweet baby girl asleep in her room I'm thinking once again about that interaction between the two and I'm feeling so blessed to have witnessed such kindness toward her. The fire is crackling, the sounds of "Have yourself a Merry Little Christmas" play, and the candle's are filling the air with the smell of Christmas cookies. I don't have big plans for the day, just some laundry, bath room cleanings, and a little bit of gift wrapping. Its days like today, moments like the one I'm enjoying right now that mean more to me than anything. A day spent in our home, with our Ashley, at the holidays. I love my life. All the ups and downs. The pain and the joy. Its just so amazing to be her mommy. So amazing. I'm so grateful for today. I just thought I would share with you how "loud" this recent Christmas memory has been playing in my mind this morning. Hope you are just as blessed by it this season as I was. Take care my friends and Merry Christmas.

12/11/2010

New Game

Its so nice to have your teenagers home on a weekend! Can't explain how very good it feels to play games around the table and watch them hang out with their baby sister. Blake and Allie are so grown up and its not often that you find the two of them hanging out at home on the same night. Especially on a weekend. Dave and I have really enjoyed having these young people home with us tonight.

Ash has been at it again this afternoon. Dave stayed with the girls today and I went to watch Blake play basketball in Mt. Pleasant. When I came in he informed that she had made her way over to the gifts again and had managed to find one that belonged to her. Its so funny to see her working her way through the pile of "surprises" under the tree each day. Its something I remember hurting over just a few months ago as I watched her struggle each night and I wondered if she would still be breathing come Christmas time. To have her in the middle of it all is the biggest blessing of the season.

She's invented a new game. Its lots of fun to play. Have any idea what a Magna Doodle is? If so then you'll understand my story. Ash's new favorite thing to do(other than unwrapping Christmas gifts) is to hand the toy to one of us as she commands with sign what she wants us to draw for her. She then takes it from our hands and either loves it or rejects it. Yes, she rejects it! If its not to her liking she shakes her head no and puts it right back in our faces requesting us to try again. I'll tell you that I can't draw Mater to save my life, and a rooster has me stumped as well. Most other things I've been able to pass off to her liking. We can sit and play for hours and she never tires of it. I've drawn a wide array of things for her. From spiders, to swings, to whales, to rainbows. If she knows a sign for it then its open for requesting. I've laughed so hard at what she's accepted compared to what she's rejected and put back in my face. Her taste is definitely different than mine and what I thought I had done a pretty good job at didn't even make it past her for a second or two. This girl is such a joy. Such a gift. Such a blessing. I'll be sure to pack this for our next hospital trip. It would have come in handy over there this week!

Its been a really good day around our house. Lots of quality time spent with our kids. Allie is feeling pretty under the weather this evening and that breaks my heart. Our hope is that with some rest and a few adjustments she will be back to her happy little self by Monday morning. We are being careful to keep the girls in different rooms in hopes of protecting Ash from whatever Al has going on. Its a hard time of year in transplant households. Lots of bugs floating around the schools, colds, the flu, fevers and such. Always makes us a little nervous, but so far Ash seems to be holding her own. Her cough seems to be clearing faster than mine and for that I'm really grateful.

Hope your day has been spent doing all that you love. For us that pretty much includes anything to do with our kiddos. They are growing up more and more each day and we are so aware of how short our time with them all truly is. Goodnight my friends and God bless.

12/10/2010

Promised Pics



The yellow bag of fluid is the TPN. The white bottle of fluid is the Omegaven. As I hooked her up tonight I just stared at the bottle hanging off the IV pole. So unreal to actually see it there, on the pole, connected to the line, infusing into her, in her own room. I still can't figure out how God did all of this for us, but He did. I just look at it and think, "Wow".



A beautiful shot of her smile. I love the twinkle in her eye and the joy on her face. Absolutely love this little girl. She is a precious, precious gift to me. One that I get to enjoy every single day. Its a lot of work, but the work doesn't hold a candle to the blessing that she is to us. Oh Ash, I LOVE you.

She is such a character. So awnry. You have no idea the trouble she can cause in a day! I found her neck deep in the Christmas gifts this afternoon. As I walked in the room and asked, "What did you do" she quickly threw the ornament she had stolen from the tree across the room and covered her face and head with some of the tissue paper she had torn out of the packages! She was hiding. It was so, so funny I grabbed the camera and shot video of her as she hid under the wrapping. I couldn't help but laugh at my girl. What a great memory. What a sight to walk into the room and find. I tried to store the images in my heart so that I'll never forget.

Its been a long time coming, but as I tip toe into Ashley Kate's room I catch a glimpse of that bottle and tell the Lord how very much I love her. I whisper thank you for His provision and I tell Him again that she is loved. What more did I pray for? I prayed so hard that she could give and receive love and she does that and so much more.


It blesses our heart to see her love on this silly "dinosaur". I think to myself, "how much more does she love all of us". She truly does love us all back, and life doesn't get any better than that. My sweet girl, you are a beautiful mess!

Headed Home

Dave and Ashley Kate were discharged at 6 this morning and they are on the road toward home. I can't even begin to describe the appreciation we feel toward the staff at Sutton Children's hospital. The people there are fantastic! Truly they are. We have been taking our precious Ashley Kate to them for over three years now and we have always been treated with such intense kindness and respect that it blows me away. From the top to the bottom you will only find the kindest of people in that place. I love them for taking such great care of us. I say us because it is the first and only hospital (out of 9) that has our family, not just Ashley Kate, in mind as they care for our daughter. It is amazing. As much as I hate being in the hospital with Ash, they make it as good as it can be. I really, really appreciate all they do for our family.

Discharge by 6am? that doesn't just happen. Dr. Brown, Brian, Rosalyn, and our nurses this admission...thank you for pulling that off for us. We appreciate it more than you will ever know. More than you will EVER know.

The staff, especially our staff of physicians, want Ashley to have quality of life for the time that God gives her to us. It is their priority, just as it is our, to give her as much time at home and with our family as possible. To have that vision in mind, that priority as they take care of our daughter, makes all the difference in the world. Our time is precious, it is valuable, and it is short, and they get that. We will spend today at home instead of waiting around the hospital to be released.

Wednesday evening Ashley and I spent precious, quality time snuggled up in her bed. Yes, I said her hospital bed because she insisted that we be in it together. That tiny girl laughed, and giggled, and signed, and played, and listened as we "talked", until 4am Thursday. I remember lying next to her thanking God that I was being given those moments with her. It was a night I will never forget. As my little girl finally began to settle down, and with her soft, tiny hands on my face I began to share with her what I knew of Heaven. It was in those moments that I realized I had never even told her about it. Through my tears I told her about Jesus and how very much He loved her. I told her that one day we would be there together. I cried and she giggled as I talked to her about streets of gold, and the angels, and the Father. I don't know where it all came from. It just seemed right to let her know that one day she would meet Jesus and I wanted her to know that when she did there would be no more of her tiny tears falling, and no more owies, and no more TPN, or hospitals, or pain. It was the most precious and most painful conversation I have ever had in my 36 years. As my youngest daughter drifted off too sleep with huge green hospital gloves on each hand(she insisted on wearing them) the Omegaven infusing into her veins, I selfishly prayed that it would be a very long time before she had the chance to meet Jesus. The tears from my eyes began to soak our pillows as I realized that she would more than likely be there before I was and something about that is just not right. Its not ok. Its just not.

I have no plans of losing my sweet girl today or even tomorrow. I'm not being negative so please don't tell me that I am. I'm being real. I'm faced with the frailty of her life and the frailty of her life line/central line every single day. Without it my daughter dies and at this time it is not stable. She is stable, the line is not.

As the realization came to me that Ash could very well die before her daddy or I, I felt the overwhelming need to KNOW what will happen to my daughter if she does have to leave us. I'm not opening this up to opinions, or different religious beliefs. Please don't jump on that. I make no apologies and I certainly don't hide the fact that we are Christians. We do believe that a relationship with Christ is the only way to heaven. I won't preach at you if you don't believe that very truth, but I will be happy to share my faith with you if you would like. I won't be swayed in my beliefs. I'm searching for Biblical answers, truth, that assures me that my daughter who has no ability to understand who Jesus is will indeed go to be with Him. That is where my focus is as I read the word. I'm looking, searching, for answers in a situation such as Ashley Kate's. I know He loves my daughter, I need to know that she will indeed be with Him if He calls her from us. I need scripture to back that up. Not assumptions, not ideas, not opinions. Scriptural truths.

This morning as I sit and wait for my husband to bring our youngest daughter back home where she belongs, my heart is heavy as I realize that this is just one of the homes she will be in during her childhood. She is headed toward another home as well and my prayer is that the journey will be a very, very long one that takes years of her staying in ours before she arrives there.

Shes headed home and my heart can't wait for her to arrive. There are new packages or "surprises" as she refers to them under the tree and her eyes will light up the moment they walk in just as they do each morning as she opens them to find the Christmas trees are still here. The lights are still twinkling. The season is all around her.