A Hard Night

10:07 pm 7-30-2006

We are trying to get Ash down for the night. She has a chemical burn on her chest as a result of the trouble this morning. She is very uncomfortable and has spent most of the day fighting against her arm restraints trying to scratch the wound. Tonight we pray that she will be able to find some relief and be able to get some sleep.

I (David) have to fly home tomorrow and it is very difficult to know that I won't be here to help. I won't be here to sing to her her, hold her head and try to comfort her through the pain. I won't be here to help Trish as she struggles with all that is taking place. I really don't want to have to leave at this time. Lord, please be with Trish and my Gherkin as I have to go home. Please bring our family back together as soon as possible. Thank you for taking care of our Ash.

A long day

It is not quite 6:00 and it seems like today has gone on forever. We are still in shock about the events that took place this morning. We have been told over and over again that this type of thing never happens. That makes me think there must be a reason behind the accident this morning. Immediately when the line was cut this morning I stepped into the hall to try and collect my thoughts before I spoke. I knew that if I was not careful some things may be said that I could never take back. I was trying to make sense of what was taking place and I remembered that as shocked as I was at that moment God is never surprised or caught off gaurd. How comforting it was to know that I believe in a God who loves my baby enough to never sleep or never be too busy to watch over her. There was nothing I could control at that moment except for my reaction. I could not rewind what had happened to Ashley but I could try to stay calm enough to not lose my testimony around so many people.

I am very nervous and even frightened about the possibility of Ashley developing an infection, but I have to trust Him even now. He has brought us through some very difficult days before and I know He will not fail us today. He knows the future, and maybe He could see something with that central line that I could not. So I am choosing to believe that our Father is protecting Ashley today from things that I don't know of.

Forgiveness is a powerful thing, and even though nothing was done to Ashley intentionally I needed to forgive her nurse. It was a mistake and I don't have the energy to harbor resentment towards anyone. I hope she understands that we are not angry and we are not blaming her for this accident. God is more powerful than any infection that may or may not occur. I have to believe this tonight now more than ever. Without faith I would not have the strength to go on.

Update

11:30 am 9-30-2006

Ashley's central line has been removed. This has been an extremely emotional morning and our nerves are pretty well shot. The nurse that cut the line (Linda) has decided to take another patient as she is to upset to take care of Ash. We are extremely disappointed with what has happened but we are not angry with Linda. I just spoke with her in the hall and she began crying an apologizing to me. She is very distraught and felt she should not continue to care for Ash. I let her know that we were not angry with her, just very disappointed with the situation. Please pray for Linda as this will be a difficult day for her as well. Please pray for Ash that she will not get an infection and that a future surgery will not be necessary.

Update

11:00 am 9-30-2006

A suitable repair kit cannot be found so they are in the process of removing the line. This is very difficult for us to swallow as we have fought so hard for so long to protect this line. It is inconceivable to us that this is happening. This event may require that Ash have another surgery to place another central line at some time in the future. Please pray for Trish as she is having a very difficult time with these events. Please pray for Ash that things will go smoothly as they remove the damaged central line.

Update

10:55 am 7-30-2006

The central line Ash has was placed at a hospital in Dallas and the repair kit they have here is not the right size. The Dr. went somewhere to try to find a repair kit that will work. If one cannot be found the line will have to be removed. Will update soon.

Update

10:05 am 9-30-2006

A surgeon has decided that the best course of action is to repair the central line. They will cut the end off completely and leave the portion that is inside Ash in place. Then they will splice a new end onto the old tube. This will replace everything past the tube that comes out of the chest. Please pray for Ash and that she does not contract a central line infection from this episode. Thank You.

Urgent Prayer Request

9:33am 9-30-2005

URGENT PRAYER REQUEST

About 30 minutes ago a nurse was changing Ashley's central line dressing (the central line is the line that carries her nutrition and meds directly into her heart) and accidentally cut the central line. Ash has had this central line since her original operation over 13 months ago. This is a very serious time as central line infections can be deadly in a very short time. The doctors are in surgery doing another transplant right now, so we do not have direction as to what we are needing to do. For now the central line just has a hemostat holding it closed. We are thinking there are 3 options. Remove the central line at the bed side which means pulling it out without any pain control, having her go back to surgery to have it removed which means she would be back on the ventilator she just came off of or possible doing a patch job on the line itself. All of these options involve an increase risk of infection, which is the number one cause of death following transplantation. Please please pray for Ash today and that things can be fixed without complication of infection. I will update when a decision has been made.

Rejection

When we arrived I was under the impression that one of the biggest hurdles in this process would be Ashley's body rejecting the new organs. I have been surprised by what I have learned. I expected that if rejection were to occur, it would happen or show signs of happening in the first few days after surgery. I thought the longer out of surgery, the better. However, I have learned that the opposite is true. Acute organ rejection is actually very rare and rejection is more likely to occur further out from surgery. I know that God has brought our Gherkin this far and I place my trust in him that Ash will not have to face an episode of rejection. Please be with us in prayer that Ashley's body will happily accept the new organs and rejection will not be an issue for her.

As I go to sleep tonight I will be praying for the family of our donor organs. I pray that one day you will be able to know Ashley's Story and what an important part it you were. I am so sorry for your loss.

Time for Bed

It has been a long day, but it has been successful. I am so thankfull that God gave Ashley the strength she needed today. She is really struggling tonight and we can't seem to make her comfortable, but we know this is what it takes for her to get better. I am so proud of her strength. She was so strong for us yesterday and today it was our turn to try and be strong for her. God is good even when the day seems to never end. Right now they are changing and packing Ashley's dressing so we can try to get her settled in for the night. She is not receiving any medication tonight to help her with the pain because they need her to fight to get the remaining fluid out of her lungs. She sounds very "gunky" in there and all of that must come out soon. She is the toughest thing I have ever seen. I am amazed at what she can endure. Tonight her arm restraints came off and I am so thankful for that. It was very hard to watch her struggle against them. Her swelling is down and when she drifts off to sleep she looks absolutely beautiful. Her eyes are no longer yellow and the white sets off the dark color of her eyes. Her skin is also slowly changing color. I almost see a pink, rosy glow to her cheeks.

I am feeling encouraged tonight. I can feel the prayers of precious people lifting us up to the Father, and I can't express my gratitiude enough to all who are praying for us. Your notes in the guest book have become a highlight of our days. I am truly thankful for each kind word that is offered. So many times throughout the day my mind begins to think of the little life who gave us such a gift. I can only imagine what a fighter that precious little one must of been. Each time I look at Ashley I whisper a thank you. It is amazing how much you can care for someone you have never met. I hope someday our donor family will know how much we love them for the gift they gave.

I am going to go tuck our tiny princess in to bed now. Thank again for all your love and support. We will post again tomorrow. May God Bless.

The Vent is Gone!

5:20 pm 7-29-2006

ASH IS OFF THE VENT!!

Everyone was ready to take Ashley off the vent at around 3:00 but she needed to be awake to do so. She decided it was nap time and didn't know they were all waiting for her. Well about 4:45 we started giving her a bath, changing diapers and just messing with her trying to wake her up. Finally about 5:20 she was awake enough to finally take the tube out. They asked us to leave the room while they worked on her. When we came back in she looked so sad. Her throat is very sore and she is very hoarse, but when she saw us she made a little squeaky cry. As painful as it is to see her hurt, we are so grateful to the Father that she is up and on her own.

She looks pretty uncomfortable, but she is breathing on her own and doing well. Over the next couple of hours they will be checking her blood gases and if the numbers stay where they are then the ventilator will be a thing of the past. Thank you for all your prayers for our little Gherkin.

The kids began the long drive home so things will be pretty quite around here tonight. They just left around 1:30 and we are already missing them. I (Dad) will fly home on Sunday, but mom could be here awhile. The transplant coordinator said the average hospital stay last year was about 45 days. After that Trish and Ashley will need to be in the Omaha area for quite sometime. Estimates range from 6-9 months. Please pray for our family as this will be a long time for us to be apart.

Coming off the vent

They will be attempting to pull Ashley's ventilator around 3:00 this afternoon. This will be a huge hurdle for Ash. Right now they have taken her off of the sedation medicines and she is beginning to stir and feel uncomfortable. This is necessary for her be awake enough to know that she must breathe. Please be in prayer that she will succeed. If she struggles to much then they will place the tube back into her throat. We have not seen her eyes yet today. She is shaking her head back and forth to say no to anyone who tries to touch her. This is typical Ashley. She knows when she does and doesn't want to be touched. We will let everyone know how the afternoon goes.

Morning Update

Ashley's night was pretty uneventful. She slept through the night and rested well. They have begun another attempt at weaning her off the vent today and so far she is doing better than on the previous attempts. The goal is to have her off the vent later on this evening. Part of the weaning from the vent process includes decrease the sedation and increasing her awareness, so she seems quite a bit more uncomfortable today. Please remember her in your prayers today as she begans to experience more and more of the pain.
The biggest challenges right now are looking for rejection of the new organs and infection of the central lines. We are so thankful that Ashley is doing well now more than 2 days out from surgery, but I can feel the stress beginning to set in. My prayers is that Ashley will just astound us all and not experience any of these complications. She is pretty amazing, and I know how amazing the God we serve is. I am hoping to try and calm my nerves and be able to rest on Him. His burden is easy even though mine feels so very heavy at this moment. I am feeling nervous and so I am praying for peace. How very vulnerable I feel right now. The smallest thoughts seem to be followed by a flood of emotion and tears. Please pray that I can pull myself together as Blake and Allie prepare to leave this morning. I need to be strong for them and for Ashley and right now all I can do is cry. Perhaps I am just tired.
We will try to keep posting updates throughout the day as Ashley progresses toward breathing on her own.

Going To Bed

9:56 pm 7-28-2006

Ash played with us a bit more tonight. She claps her hands together, gives high fives and waves to us. It is such a joy to watch her do these things. All the nurses and the other moms with kids who have been here a month or more are just so surprised at what she is doing. The other moms report that their babies didn't do much of anything for 3 weeks or so post-transplant. Thank You God for making our Gherkin so tuff. Please pray that Ash can come off the vent in the morning. She is still struggling with the fluid in her lungs, but we can see changes in her swelling. I think the medication is working.

It has been such a long day. We are starting to feel very tired and we are almost 48 hours out from the surgery. There are many other families that we have followed over the past year that we have never met but have grown to care for. One of those precious families lost their son this week. I know their hearts are hurting and mine breaks for them. If you would please lift his mommy up in prayer tonight I would be so thankful. Her name is Kim.

The reality of the situation we are in has hit us very hard today. I am really trying to focus on what God has done for Ash and what He plans to do. He has given us tiny little gifts of joy throughout the day and in between my tears I am able to smile at my little Ashley. If only each one of you could see how tuff she is being. I know you would be inspired by the strength God has given to her.
Tomorrow Blake and Allie will begin to travel home. How sad it will be for me to tell them good-bye. Allie is very concerned that Ashley can not talk or cry. She is very scared, but I tried to reassure her that this temporary and that this is her chance to get well. She wanted to know why we let them make her so sick when we got here. This is too big for her to really understand. Blake has a hard time seeing Ashley looking the way she does. He did go in to see her open her eyes for a few minutes tonight. When he said, "Hi Ash, its Bubba" she attempted to grin( even though the vent is so large in her mouth) and began to wave her little fingers at him. They are so close, and she was so happy to hear his voice. I pray God will protect them as they are on the road the next two days.

We are going to go rest now. Ashley is sleeping soundly, and we are ready to tuck Blake and Al in bed. Thanks for caring. We love you all.

Ashley Played With Us

5:35 pm 7-28-2005

Ashley woke up and played with me. She opened one eye and looked at me and reached out. She didn't have to say anything for me to understand, she wanted my glasses. I leaned over and said "Ashley, don't get my glasses!" and she grabbed them, pulled them off my face and began shaking them around. She dropped them on the bed and began clapping at her accomplishment. She won the game! She started hitting her hands together and doing patty cake, skipped the roll em up part and went right to throwing them in the pan. I asked a nurse if they could find a rattle because all of Ash's toys are back at the hotel (didn't think she would need them for awhile) the nurse thought I was crazy because transplant kids don't play so soon after such a surgery. Well the nurse finally found one, but by this time Ash had fallen asleep. She was pooped out from all the activity. How she can do so much and move around so much with such a large incision I just don't know. God is so good to her and to us.

Ashley is awake!

It is around 1:oo and my sweet Ashley just woke up! I was standing at her bedside just marveling at how amazing I think she is when she opened her right eye and began to wave her tiny hand. I am overcome with joy! This was the most incredible feeling. God continues to bless me. I said, "Hi sweet baby" and she continued to wave her little fingers. Her arms are tied down at the wrists but her little fingers are not. I really needed this today and I am so grateful for this tiny gift. I just wanted to tell you all my good news. She is starting to wake up now and recognize that she is not alone. I know she feels surrounded by your love and prayers.

His timing is perfect

Although I am diasppointed that Ash will stay on the vent today I am reminding myself that there have been several days in Ashley's life where things have not gone the way that I had expected. May I share with you that one of the lessons I have learned through our Ashley is that God's timiming has been absolutely perfect in each of these situations. Things have occurred in just the right manner, on just the right day, at just the right time. So today I am going to wait on Him and let Him decide when it will be the right time for Ash to start breathing on her own. Maybe she just needs to rest another day before the hard work begins? She has been through to much in the last couple of days and perhaps she is just too tired today. I know that He knows why and that is enough for me today.

The doctors have decided to begin a medication to help her try and get rid of some of the fluid in her body. She has always been so tiny so it is difficult to see her looking so big and puffy. They are now doing an ultrasound of her abdomen to make sure the blood supply to her new organs is flowing properly. This will be the second one they have done it is very uncomfortable for Ash to have them press around on her tummy with the instruments. As a mom I would like to ask them to please leave her alone, but I realize how important it is for all of these things to be done. There will be many, many hard days ahead with lots of things that will make my sweet girl uncomfortable. Please pray for me to be strong. Ashley is so much tougher than I am. I marvel at how strong she is. She is a fighter and God has equipped her with the most amazing spirit. I know she can do all things through Him because He does give her strength.

As I think about the upcoming days as Dave and Blake and Allie prepare to leave us my heart is breaking. How I wish we could all stay together! Again I know God's grace will be enough to get us through this time, and one day He will bring us back together. Thank you for loving my baby so much and for taking the time to talk to Jesus on her behalf. I hope each one of you know how precious your words and prayers are to me at this time. How blessed we have been to be loved by so many.

Prayer Request

8:30 am 9-28-2006

Please pray for Ash today as things did not go as well as expected last night. She is still on the vent today and they say she has to much fluid in her lungs. They say if she comes off the vent she will "fail." So please pray specifically today that she would be able to come off the vent and begin breathing on her own, sooner rather than later. We will update a bit later.

Calling It A Night

10:44 pm 7-27-2006

Well, things are beginning to settle down and we are going to turn in. I managed to talk Trish into going back to the hotel room to spend the night, although I won't be surprised a bit if she returns way before morning. I do hope she gets some sleep. I will go lay down in the room with Ash and be with her through the night. They intend on weaning her off the vent tonight and have already begun to back it off a bit. They will slowly bring the settings down through the night in hopes of having it off in the morning. Ash has really not been awake since the surgery and has not made any sounds. They say to expect that to change when the vent comes off. They say she will be on less sedation and be awake more tomorrow. They are working to prepare us as she will be in a lot of pain and will cry most of the time tomorrow. Please pray for us as I expect tomorrow to be a much much harder day for all of us. Thank you for praying for Ash and thank you for your prayers for her donors family. It means so much to us.

I will update in the morning. Goodnight.

Ashley's Boo Boos

5:23 pm 9-27-2006

If you are squeamish don't read this post.

Sammy this means you!!

I walked into Ashley's room after my last post and was very surprised at what I saw. The nurses were changing the dressing over her incision and this was the first time I had seen it. It was more than I had expected. There is a vertical incision begging in her chest at about the level of her heart and extending down to just above the pubic bone. I would estimate the incision to be 8-10 inches in length. It pretty much looks to cover the majority of her chest and abdomen. The underlying muscle was stitched closed, but the skin has been left open. The wound is about 1/2 wide. The moment I saw this I think it opened my eyes to what she went through last night. I thought last night was the hard part, but now I am realizing more that the hard part is yet to come. Knowing that I will have to go home soon and leave her here for who knows how long (3,6,9, 12 months) is very difficult to comprehend. I do know that however long it takes it has been worth it to know she has a second chance at life. Thank you again to her donor and the donors family.

I began counting a bit ago and I think she has 9 tubes taking things in and out of her little body and there is around 7 or so wires. If I had to make another page of photos for her Boo Boos, it would need to be a big one. Both of her wrists and her left foot had IV ports, a new central line with 3 ports has been place in the left side of her neck, her face shows quite a bit of bruising and there are multiple bruised spots on her face, neck, chest, abdomen and legs. She has a large area of "angry red" around the new port in her neck. She has a hole where the old G-tube was and there is a new G-tube placed just above the old site.

Please remember her in your prayers tonight and please pray specifically that we will be able to get her of the ventilator in the morning. Thank You.

God Provides For The Sparrows

3:54 pm Wednesday September 27th

Trish and I just had the chance to go down to the cafeteria and get some lunch. We decided to sit outside on the patio. While eating our lunch and talking a little sparrow hopped up by our table. We threw a little food his way and he grabbed it in his beak and headed off into a pot of flowers to enjoy. A few minutes later he was back, and this time he had a few little friends. As we fed the sparrow and watched them hopped around I was reminded of how God provides for those little guys each and every day. They do not store up their food and keep a cupboard full back in their nest, they just are just provided for on a daily basis by their Creator. The same Creator that made you and me and Ashley. So today when I watch my little girl struggle for each breath I will remind myself of those little birds and remember how much God loves me and my Gherkin (Ashley for those of you who didn't know she was our Gherkin.)

Not much has really happened today. They wanted to get her off the vent, but she just isn't ready. They have begun having her do more and the vent do less and will continue this trend the rest of the day. They are focused on being sure she does not have to stay on the vent past tomorrow morning.

We met a Mom of another little guy a few rooms down the hall whose baby had the same surgery as Ash. His was about a month ago. She was able to share some of her experiences with us and helped inform us of what to expect in the coming days and weeks. We are on a floor with many kids in the same shape as Ashley right now so as you pray for our Ash, please remember some of the other family's with the same struggles as ours. We thank each of you for your prayers and your concerns.

Ashley is on a lot of meds one of which is a steroid. After surgery, last night, she still looked like our little Gherkin, but today she is beginning to puff up. It is so strange to see how her appearance is changing practically every hour.

Each time I get to the computer the first thing I do is long on to the guestbook at Ashley's website. The comments keep coming and We are so blessed at the care and concern expressed. We thank you for taking the time to let us know you care. Please continue to spread the word and let everyone know about www.ashleysstory.org It is very helpful to us to read the guestbook entries each day. Thank you for being a part of Ashley's Story.

I have not found a computer here that will let me post pictures, but if I find a way I will let you guys see how she is looking.

Is it morning yet?

I am so grateful to have last night behind us. We got to see Ashley around 2:oo this morning. She was sedated for a couple of hours very heavily and then she began to stir. You can see her crying and trying to scream, but because of the ventilator you can not hear her. This is breaking my heart! I want so badly to touch her and hold her. We try to stay very quiet and not say much in her room so she can rest without stirring. Originally they had decided to not give any pain meds because they had hoped to take her off of the vent this morning, but at 6:15 they began to make her more comfortable. They eventually hung a continuous drip of meds and have decided to leave her on the vent today. She is very swollen and does not look like herself. I have never seen so many tubes and machines coming out of something so tiny. All of this is scary so I try to just talk to God continuously on her behalf. She is having a little trouble with blood sugar so they took blood from her heels every hour last night. That was tough. They are telling us it will take a few days for the pancrease to figure everything out.

All in all they say things are ok for now. She spiked a temp and they are being very cautious. The most dangerous thing we are facing today is infection. Please pray for God to protect her tiny body. It has been through so much.

I think I am still in shock that we are here. Ashley received her organs after being listed for only 20 days! This is such evidence that God is working on her behalf. The hospital and transplant staff are incredible. I am so thankful that God redirected our path from Miami to Omaha. I really feel we are in the right place.

The next few days will be long and very critical. So many things could go wrong. Please remember to pray for Blake and Allie. They are being so very brave and unselfish. I know they are scared today. Blake has chosen not to see her until they remove the ventilator. His heart is too tender to see her struggle against the machine right now. God has truly blessed us with 3 incredible children. Thank you for loving us, thank you for your messages they are bringing us such strength, and thank you for caring for Ashley. God Bless.

Morning Update

9:45 am Wednesday 9-27-2006

I woke up this morning and had the strangest thought process. I was asking my own brain if I was here in Omaha and Ashley had received her transplant, or was I just dreaming. The timing of all this is just so unbelievable to me that I truly was wresting with my own thoughts as to whether I was here or if this was something I dreamed yesterday. I have never had to question my own brain in this way and it was quite strange. Fortunately I did quickly decide that my brain was working and this is real. I know I will have a much better day today knowing that my brain is actually in fact working. Although if you ask Trish there may still be some question.

Trish stayed the night in the PICU (Pediatric Intensive Care Unit) with Ash and things did not go real great. She will come to the computer soon to update what took place. I just ask that you please continue to pray for Ashley today. Specifically that she will be able to get off the vent sooner rather than later. The sooner she gets off the better the outcome for her so pray that she receives the strength she needs to breath on her own.

The area of the hospital we are in does not have the same level of access to the internet as where we were yesterday so posting is a bit more difficult. With that said the posts may slow down a bit today, however I will continue to post as much as I can.

Surgical Report

12:02 am Wednesday 6-27-2006 We just finished speaking with the doctor and she feels things went very well. She told us that there is a 50/50 chance of a second surgery in the near future. She doesn't expect any problems because Ashley did so well, however she said complication are very common. Ashley should be sedated through the night so we won't see much activity from her until tomorrow. If things go well through the night she may be off the ventilator as early as tomorrow morning. We are told to expect her to be here in Omaha for the next 3-6 months. She has an ostomy which means all the parts are still not connected. We expect that there will be another surgery in 6 months or so to reconnect the bowel. The doctor said we are at the beginning of a long roller coaster ride and there will be many ups and downs to come. Please keep Ashley and our family in your prayers as we continue this journey.

One weird little twist.....They put in a new pancreas but did not remove the old one. So she has two pancreaes or pancreasees or is it pancrei? So if it gets inflammed would she have pancreatitisises? Good Question.

We are going to call it a night, at least as far as postings go. We will update tomorrow. Please keep our donor family in your prayers as tonight will be very difficult for them. To our donor family, our hearts go out to you tonight. Thank you for giving our Ashley a second chance.

Surgery Update

11:29 pm Surgery is over and the doctor should be out to talk with us in a few minutes.

Its Bedtime

This is the first night in 13 months that I have not been able to tuck my Ashley into her crib. How empty my arms feel right now and how my heart aches for another mommy somewhere out there tonight. My mind is struggling as I try to understand how this all plays out.

I know that our God is so much bigger than I had ever imagined. He is giving me a sense of peace in the middle of my longing to be with Ashley right now. I have never had to let go and really step back like we did tonight as our Ashley was taken into surgery.

On the plane ride I sat with Ashley as she slept so peacefully and I tried to memorize every detail of her tiny face. She has the most beautiful eyelashes and the tiniest nose. She of course was sucking on her thumb and making the cutest little noises that I listen to all night while she sleeps. I cried out to the Father in a silent voice and pleaded for my fears to go away. I only wanted to trust Him today. All throughout Ashley's life I have been able to share her story and today was no different. I believe with everything inside of me that she was born to share the goodness of the Lord with others. Her story gives me the courage to boldly speak of who God is and how He loves us all. She gives me strength to be who I believe I am supposed to be, and I have never been the same since the day she arrived.

Through all of the hard days along this journey God shows me His love and grace and mercy. I will forever be grateful to be called Ashley's mommy.

Tonight I pray for our donor family and there are no words to express the feelings inside of my heart. May your hearts be comforted. Thank you for giving my Ashley a second chance to live.

Surgery Update

10:36 pm Ashley is approaching 6 hours in surgery now and things seem to be doing well. All organs are in place and they are "chasing down a few bleeders." After they finish that they will place a new G-tube into her stomach in a different location and remove the current one. Then they will just close her abdominal wall. The skin will be left open for some time so please be in prayer that she does not get infected as this is the most dangerous part of the process. We hope to see her sometime in the next 3-4 hours. Again, thank you for your prayers.

Surgery Update

9:09 pm Surgery just called and said Ashley's new liver is in, all the blood vessels are connected and they just restored the blood flow. She is doing great and the new liver seems to be working. They are now going to put the new intestine in and put the stomach back. They estimate that the surgery is 75% complete at this time. Thank you for your prayers, we are witnessing the power of prayer and God answering those prayers tonight.

to be continued......

Surgery Update

7:27 pm Drs removed Ashley's Liver, small intestine and pancreas.

8:11 pm They have put the new liver in and are just starting to suture the vessels.

They say she is doing well with the surgery. They said there is still a long way to go. Please keep Ashley in your prayers throughout the night. Please tell others to check Ashley's journal on her website as we will update as events occur.

to be continued.....

First Report

4:28 pm A surgeon and about 12 other people came to talk to us in pre-op and very quickly explained a few things and then off they went. Things just happened so fast. As the surgeon took her from my arms and began to walk down the hall I didn't know what to think. It is a moment I hope I never have to experience again in my life. A complete feeling of helplessness. Immediately followed by a sense of peace. I serve an almighty God and I know that He is in control of every aspect of Ashley's surgery just as He has been from the beginning of time.

5:42 pm A call came into the waiting room informing us that they had placed all the necessary tubes, wires and monitors and that the surgery had just begun. We have been told many time estimates by many people since we arrived so we really don't know how long she will be away from us. Our estimates range from 4-12 hours. Please be with us in prayer for our Ashley and a successful surgery and please pray for the grieving family that has lost a child today. Thank you for your prayers.

To be continued ........

We Arrived in Omaha

1:37 pm We just arrived at the Lied Transplant Center in Omaha. We really are having a hard time believing we are back here so soon. We checked Ashley into the NICU a few minutes ago and they said we arrived before her organs did. What a blessing that this call came, that we were able to get here so quickly and that God has chosen this day to be the day that Ashley is given the opportunity to live. Thank You Lord!! We don't yet know anything about the donor family but whoever you are wherever you are we pray for you today, at this moment that God would give you the comfort and strength you need at this time. As time permits we will update. Thank you for your prayers today and please lift Ashley up to the Father as we are heading into a very difficult surgery. Please lift up her donors family. Thank You.

WE GOT THE CALL!!!

At 7:28 a.m. the call from Nebraska came in. We are heading to the airport to go to the transplant center. Please pray for our sweet baby, and call everyone you know and ask them to lift her up to our Father today. She will be in surgery all day and into tomorrow. We will update the journal throughout the day.
Ashley had a great day yesterday and a horrible night. She was so restless. I think she knew something was going on. God is so very good to us. I can't help but to think of the precious, self-less family who is grieving the loss of their baby this morning. I am humbled beyond words to think they would give a chance at life to my Ashley when they are hurting so deeply. Please remember them in your prayers.
I am so very nervous and scared. I want to soak up every minute with our Ashely today. Please ask the Father to strengthen us today as we truly do place her in His healing hands today. We love you all. Thank you and God bless you for caring about our baby.

Counting Our Blessings

This weekend I was reminded of how very blessed my family is. We are so very fortunate to be part of Neal McCoy's East Texas Angel Network, and we attended the meet and greet and concert yesterday. The Angel Network is a group of incredible people. They have hearts of gold! My heart was so blessed as we met each of the performers. They were so very kind and so interested in helping our children. I could never say Thank you to them enough.

As I looked around the room at the many sick and disabled children I realized once again that we are not alone. There are so many families in this area and around the world who have been blessed with very special children. Some of the children have very obvious disabilities. Then there are others who you would never guess are sick. My sweet Ashley is one of these. As people meet our Ashley they are often taken aback when they find out how sick she is. On the outside, she is so beautiful but on the inside she is broken and bruised. As I tried to fall asleep last night things were running through my mind. I couldn't help but think about people and their hearts. So many times we judge people based on what we can see on the outside. Last night I realized how many people are beautiful and whole on the outside, but on the inside their hearts may be empty, or broken, or stained with sin. They too are broken and bruised even though we may not be able to see it. Ashley has taught me many things over the last 13 months, and one lesson I will forever be grateful for is learning to love people. Just to love someone with the love of Christ regardless of who I may think they are based on their outward appearance. It doesn't take long to realize how many people are hurting and searching to be whole. I have forever been changed by our tiny miracle.

How blessed I am to have been chosen to be Ashley's mommy. I would not trade one minute of the time we have with her for anything. God is so very good to us. I know that He is holding my Ashley's life in His hands and today that is a good place for her to be.

A Few Good Days

Ashley has had a few pretty good days. She has been working hard on her physical therapy. She is seeing her therapist 3 days a week and I can tell she is getting stronger. She is now up to 14lbs! She looks so different now. You can actually see a little bit of "chub" on her thighs. Of course you can really see the growth in her face and cheeks. Unfortunately that is just part of the heavy TPN she is now receiving. She has decided to pull a few all nighters on us this week so we are really feeling the lack of sleep now. When the lights go off at bedtime she comes alive. Last night she decided to scream Mama until around 2:00. As soon as I turned on the light to check on her she would be clapping and squealing. She is so awnry.
We have not heard from the transplant center except for the call about raising her PELD score. We are praying for the call to come, but we know that His timing is perfect.

Right now she is playing ball with Blake and Allie in the floor. She loves it when they get home from school. I wish you could hear her squealing at them. It is so funny to see how her mood changes when they walk in the door. They are so good for her and she is good for them. How thankful we are to have these days at home together. God Bless you guys. We love hearing from everyone in the guestbook. Thank you for your prayers and encouragement.

COTA Meeting

Tonight Brenda from COTA (Children's Organ Transplant Association) came to have a training meeting with our Executive Campaign Committee. Brenda flew in all the way from Bloomington Indiana to help us help Ashley. We are gratefull to COTA for their commitment to helping children get organ transplants.

We had a wonderful meeting and we feel quite confident that God has chosen the right people to run Ashley's campaign. I believe each individual in that room tonight is the right person for the job. I was touched by the level of support we are getting from these volunteers. It is great to know that things will be taken care of by this group. We look forward to meeting other volunteers as you come on board. We thank all of you who serve and can't wait to see the next chaper in Ashley's Story.

If you have never discussed organ donation with your family please take some time today to do so. You would not believe how many people out there are in need and how few organ donors there are. If you want to become a donor please click on the "How to Help" link on ashleysstory.org and you can print an organ donor card.

Good News?? Bad News??

Ashley's weekly blood work came back with good news and bad news. The good news is that she managed to make some new platelets this week and her hemoglobin levels did not go down this week. The bad news is that some of her liver enzymes are a bit worse which just means that her liver is worse off this week. Some of her numbers involving her ability to clot blood are worse and this caused her PELD (Pediatric End-Stage Liver Disease) number to rise. This brings us to some good news which is that because her PELD number went up her place on the transplant waiting list also went up. So is this good news?? or bad news?? We don't know. We just continue to pray for God's will in Ashley's life and ask that you be in prayer with us that God will provide her new organs before it is to late.

Ashley's Antics

This morning we took Ashley to church. How wonderful it was to see some of the prayer warriors who daily lift up our Ashley. We sat in the balcony and listened for as long as She would let us. She is so funny. During the music she is captivated. She shakes her tiny hands and dances on her daddy's lap. After she had thoroughly enjoyed every toy and book I had packed in her bag she began to clap and say my mama over and over again. At this point her daddy took her downstairs for a walk while I stayed and finished the service.

Ashley spent the majority of the day sleeping. She hasn't been feeling very energetic the last couple of days. I know she needs a transfusion. Yesterday she decided to do a little re-arranging of her g-tube. David and I were in the backyard and Allie was siiting in the living room with Ash when Ashley had determined she has had enough of that silly tube and out it came.I was so very proud of Allie. She didn't cry or panic when she looked over and saw her baby sister bleeding. She very calmly came out and told us she thought Ash had taken something out of her tummy that was supposed to be there. Sure enough we came in to see an empty hole in her tummy. A year ago we would have all become frantic and rushed to the ER, but we have been through so much of this type of thing we just gathered a few supplies and her daddy popped it right back in. Ashley sure knows how to shake up a lazy afternoon at home. She is a very blessed little girl to have a big sister like Allison.

It has been another week with no phone call from the transplant center. I am trying to just live it day by day but sometimes the day is too much. Lately I find myself living just one moment at a time. It is way to difficult to try and tackle anything else right now. I want to be "content in whatever situation I am in" and count my blessings, but if I am not careful my mind runs away with thoughts of things I have no control over. The night time is the worst for me. As Ashley sleeps and the house is quiet I am not able to rest. I am struggling with nightmares so please pray for rest and peace for me through the night. I want to trust the Father that His will is perfect even while I am at rest, but I seem to have no control of my thoughts while I sleep.

A few nights ago as I tucked Blake into bed we were talking about our Ashley. He asked me if I thought his liver would be too big for Ash. He had been wondering if it would fit could he give it to her so she would a chance to live for 10 years just like he has. My heart was so proud and broken at the same time. He loves her so much he would be willing to go on to heaven so she could grow up. What a burden his tender heart must carry. I assured him that God was in control of Ashleys organ donation and that we would just trust in Him. How very thankful I am to be the mom to 3 incredible little people. I am truly blessed.

As for now please pray that Ashley's g-tube site will begin to clot and stop bleeding from her last little manuver, and that the Father will continue to prepare us all for His plan in her life.

Getting back to Normal

We have been home from Omaha for a full week now and it has been wonderful. Ashley is settling back into her routine. She was so funny the moment we stepped inside of the house. You could tell she knew we were home where she would be safe by the smile on her face and the squeal in her voice.

She is doing well this week. She is having physical therapy 3 times a week, and I feel like she is getting stronger each day. She is really growing from the extended time on her TPN. She is now well over 13lbs. It seems so funny to see a little chub on her tiny face and legs. We are glad she is growing, but her liver enzymes are taking quite a hit. Please pray that God will place His protective hands around her liver as they attempt to grow her large enough to survivie the transplant. She is also running low on blood this week. We expect to be called in any day now for another transfusion.

When Ash is awake she is learning and playing and vocalizing more and more. Tonight it was so precious to see her notice a group of birds flying overhead. She watched and reached and grunted at us as if to say" would you get those for me please". How wonderful it is to see things through her eyes. She is an absolute gift to our family and I find myself being more and more thankful for each moment of the day that we all spend together.

I am truly blessed to be the Mommy to this little girl.

No Call !!!

The phone call didn't come this weekend.

What is a Gherkin?

We have affectionatly nicknamed Ashley "The Gherkin." Some people have asked why so lets first discuss what a Gherkin is.

Gherkin (French cornichon) is a young cucumber (Cucumis sativus), picked when 1 to 3 inches (3 to 8 cm) in length and pickled in jars or cans with vinegar (often flavoured with herbs, particularly dill; hence, ‘dill pickle’) or brine.
The term can also be used to refer to the West Indian Burr Gherkin (Cucumis anguria), a related plant species, originally West African, that was introduced to the West Indies, probably by the Portuguese. This ‘true’ or Burr Gherkin or badunga cannot interbreed with the ‘true’ cucumber (Cucumis sativus), which is the condiment vegetable now generally known as the gherkin or dill pickle. The West Indian Burr Gherkin is edible and may be pickled but must be picked when no longer than 1.5 inches (4 cm) long, since it becomes bitter and spiny if allowed to grow larger.


We chose to call Ashley "The Gherkin" because due to her health condition she is very small and most likely will always be quite petite. She grew from 2 lbs 12 oz at birth to 12 lbs at 6 months old. From 6 months to 1 year she remained at 12 lbs. She is much like a little cucumber that dreams of becoming a great big ballpark dill pickle someday. However sadly some cucumbers never make it. In fact as stated above they are picked when but a mere 1-3 in. So much like the little pickle, our Ashley will always be our little "Gherkin."

Just as a point of order please do not confuse our "Gherkin with the skyscraper in London which also bears the nickname of "Gherkin." As you can see it is really more like a giant Dill Pickle.

Everytime the Phone Rings

Last night at 8:58 pm the phone rang. Trish and I both ran to the living room and as she picked it up the area code read 402!! This is the area code for Omaha Nebraska. It turns out it was not the transplant center. I think this was the first time we realized how our life is going to be waiting for Ashley's transplant. There are complex emotions that are difficult to explain. I never thought a common daily occurance like the telephone ringing would become such an important event in our lives. I know the day we finally get used to the phone ringing again will probably be followed by the call we are so anxiously waiting for. We pray that day will come soon.

Ashley's physical therapist came to work with her today and placed braces on her legs to help relax the muscles which are way to tight. We are going to push Ash hard between now and surgery to get her as strong as possible. Having three organs taken out and replaced will be a very big insult to her body so we are going to do our best to get her ready.

Ash & Mom Are Home!!!!!

Last night we picked Ashley and Trish up from the airport. When we arrived home we were surprised that Nan had arranged a suprise welcome home party for Trish and Ash. We had a great time and Ash enjoyed seeing her Nan, Grandma, Graypa and Granny. Her face lit up with excitement when she saw her Blake and her Allie. We are so thankful to have them home.

She was sent home with the original G-tube in place becuase the new GJ-tube they had inserted was ripped out by our little Ash. We are hopeful things go well with this feeding tube however we are prepared to return to Omaha for another surgery to insert a second GJ-tube if necessary. Please pray with us that this additional trip and surgery will not be necessary.

Last night was wonderful knowing that all 3 of our children were tucked safely in their beds all together at home.

Ashley is Coming Home

Things seem to change on a day by day, minute by minute basis in our lives these days. We just found out that Ashley is going to be coming home from Omaha tonight. WooooHoooooo!!! She will be sent home to wait for the call for organs. In some ways we are disapointed as we had hoped that we would find some answers for her in Omaha that would avoid the need for transplant. However we do feel some relief in knowing that she is on the transplant list now. She has been listed for a liver, small intestine and pancrease. We know that if organs are to become available it will happen in God's perfect timing. We ask that you pray for her and for us as we begin this difficult waiting period. As we wait we continue to watch her physical condition deteriorate. Please be with us in prayer asking God to help her hold on until organs become available. We also ask that you be in prayer with us for the family of the child that will be lost in order for our Ashley to receive a chance to live.

Ash Visits the Zoo

We have asked everyone we have come in contact with what we just have to do while in Omaha and they all told us we have to go to zoo. So today there was perfect weather and we took Ash and the kids (and the grandmas too) to the zoo. It really is a great zoo. If you ever end up in Omaha I would highly recommend it. (They seem to really like monkeys in Nebraska) Ash enjoyed riding around in her stroller and at one point she started waving to some kind of little rat thing with a funny looking tail. Was not my favorite animal, but I guess she likes rats. It was nice for her to be outside of the hospital walls. Ashley is so enjoying Blake and Allie being here to play with her. She has laughed and giggled for days at those two. They are willing to do almost anything to make her smile. It has been a wonderful visit. She will be sad to see everyong go home tomorrow.

On Tuesday Ash has an appointment with a metabollic specialist over at Childrens. Depending on what he thinks she may have a liver biopsy next week. If he finds nothing then Trish and Ash may come home soon. If he does find a problem they are considering taking her off of the transplant list. Please pray with us for God's will in her little life. On a lighter note she is proudly saying "My mama" over and over again for all who will listen. This sure makes our hearts happy.

Ashley's Family is in Omaha

Last night we arrived in Omaha to visit Ashley and Trish. Ash was in the hospital so we thought we would just be sitting around the hospital all weekend. What a surprise it was that they discharged her on Friday night. We where so glad that she got out. Blake and Dad thought they would take her to do fun things today like skydiving or whitewater rafting, heck even take in a Nebraska Cornhuskers football game. But did we? NOPE! We spent all day shopping. Woohooo.... I just can't tell you how exciting it was to visit two mall in one day with four women. What a great time we had.