Ashley's Story

She will leave fingerprints all over your heart

2/29/2008

Talking to God...


...about this baby and the other two He gave me. Trying to convince myself that He remembers that I'm a mom and that all three of these children need me. Or maybe its me that needs them? I think its more like the latter. Oh, I know He hasn't forgotten and doesn't really need a reminder from me, but today I just wanted to ask Him if He knew the other two were without me right now.

I don't allow myself to question Him too often. I KNOW He is good and that He is working in the life of our family so questioning what He is allowing us to go through isn't going to change any of it. I just go along accepting that this is what has been asked of us and honestly I would rather continue doing this than not needing to anymore. So many dear, sweet mommies don't get to do what I am still doing and I know they would gladly trade places with me. I am blessed. Blessed to have this private time with our daughter. Blessed to be the one her eyes "talk" to each day. Blessed to kiss her cheeks, cuddle her soft self to my chest, and smell her hair each and every day. Blessed to beloved by this sweet, sweet girl. I am so blessed.

She looks good. She is sleeping already and I am listening to the struggle inside of her chest as she inhales each breath. It sounds so loud and almost violent, but tonight I am more than thankful for those sounds. The rise and fall of her chest is not controlled by a machine but by her own self. She is battling back and it won't be long before those eyes are twinkling with joy again. Surely it won't be too much longer before her need for oxygen support is gone and she is back to breathing comfortably.

I'm trying to hide my disappointment, but I'm afraid it is coming out all over Dave in our conversation today. He is my safe place. The place I can go and be disappointed, be grumpy because my heart is sad, or be a little angry because our plans didn't work out. Sure he doesn't deserve any of it, but he allows me to snap and responds with kindness. He allows me to cry and responds with understanding because he too would like to break down and cry a little. He allows me to be silent on the line as the minutes tick away, and responds by reminding me that he loves me and is sorry I am struggling today. My heart is sad because our little one is here, our ten year old prepares for her first soccer game with a new team, and our twelve year old has traveled with friends instead of his family to the opeing tournament of baseball season. I'm their mom and I'm supposed to help Ash feel better, encourage Al that she will do great, and provide routine and structure for my son who depends on me to prepare everything the way he has become accustomed to before a game. I'm their mom and I am not able to do any of the things I need to be doing tonight. So I ask God, "Did you forget that I'm a mom? Do you remember that I have three children who all need me? Can you see my broken heart and are you still collecting the tears that I'm crying?"

I know how silly this is. The disappointment will pass. The brokeness will heal. The presence of God will be felt. The plan for our family will continue and as long as He is glorified and people can see Jesus in us while He works out the details then all will be worth it. I'm glad He loves me enough to ignore my weakness and manifest His strength. That's the way it has to be. If I could do this without His help it wouldn't be worth doing.

Ultimately its not about me being their mom. Its about Him being our God. He hasn't forgotten anything. It's me that sometimes forgets. Thanks for listening as I work this all out.
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Have you ever been...


so thirsty that you would be willing to suck the moisture from a damp cloth just to feel something wet on your tongue? This my friends was the way Ashley Kate spent her entire day yesterday. Longing for a drink of water, a piece of ice, and finally settling for a wrung out cloth that had once held cool water. She pleaded with her eyes, clapped her hands, hit me when I was close enough to reach and whimpered. My heart was broken for her. Finally once she settled in to her room around 9pm I gave this baby her sippy cup full of cool water(don't tell her that I opened up her g tube and let it all leak out as quickly as she could pour it in. What she doesn't know won't hurt her). This baby was thirsty!

We have had to "dry" her out in an attempt to rid her lungs of the extra fluid they like to hang on to. She is so dry the moisture has left her skin and she is flaky and itchy. She scratches and claws at her arms and legs and I massage her skin over and over again with lotion trying to make it feel better. Yesterday she was allowed no water because of her scheduled trip to the OR. Today I have given her cup after cup even though I don't dare let it stay in her tummy. I sure don't want her to throw up and start this whole infection process over again. For now she is content to wet her mouth and her throat and doesn't seem to care that none of it is staying inside of her.

No new orders or changes for her today. We were told that she will be the first to be "bumped" since there are no available beds in the PICU. This means we will be placed on the general pediatric floor where the influenza virus as well as many others thrive as if it were the promised land. My earnest prayer is that no other children get sick enough to need our bed here in the PICU. I do not want to expose Ashley Kate to all that awaits her upstairs. We need to get out of here and to this point she has avoided picking up any secondary infections. Coop is not an option for us at this time because her chest tube is hooked up to suction and there is none available in the coop rooms. Her oxygen requirements are also too high for them to allow her over there. What a dangerous place we are in. Too sick to be off the floors, but to well to hold our place in the PICU. Please don't misunderstand me. I am THRILLED she has remained off the ventilator. I just don't want her to be exposed to any more dangers.

So her chest x-rays are improving, but we are told that is only because of the chamber and the suction that her chest tube has been hooked up to. If they pulled it, or turned of the suction the fluid would re-accumulate and we would start all over again. So we wait. Again. We wait until her body stops producing all of this extra fluid that likes to compromise her lung capacity. How long do we wait? Only heaven knows. For real, only God knows. Why does she consistently struggle with fluid in her lungs? Again only God knows. They know that some transplant children chronically do this and others do not, but they do not know why. Ash is one of the "lucky" ones who does. Anytime she gets sick her respiratory system is affected and she struggles to breathe. Unfortunately it looks as though this will always be one of her main issues post transplant.

When do we go home? When her lungs heal. Completely. Can we have a transfer to Shreveport? We would hope so since PRAISE GOD her organs have not been affected with this admission, but at this time the doctors are not supportive of it. So were stuck in cold, cold Omaha and our only hope for seeing Dave, Blake, and Al is a miraculous recovery that allows us to board a plane and fly to Texas.

The kids schedules have picked up again and we are thrilled for them. Two of the things they love the most begin tomorrow and we are determined to allow them to keep as much normalcy in their lives as possible. This also keeps Dave with them so that they will have some parental support. My new goal is to be home in time to celebrate our 15 year anniversary together. 13 days. Thats not long, but I believe it could happen. Obviously our family vacation has been canceled and because of her lung issues will not be planned again for a very, very long time(skiing,hiking, and mountain air just won't be an option for a while for our little pickle). So spring break will more than likely be spent in Omaha Nebraska or on that favorite little street of our in Longview, Texas. I prefer Texas, but thats just me.


Ash has now put out close to two "diet cokes" worth of fluid from her left lung. I find that amazing! Where in the world is it coming from? She is now drifting off to sleep and I am going to heat up a tv dinner for lunch. Thanks for checking in with us today. I hope your day is a good one. Take care. Trish

2/28/2008

A little Something I learned

Last Friday as I walked through the door of our little yellow house a sense of excitement ran through me. Everything that I miss, that I long for, that I love was supposed to waiting just on the other side. The rooms were so inviting and so familiar. It felt good to be back there, but only for a moment. As the day continued into the evening and then into the next day I learned a little something from that little yellow house. The walls of that house are not what makes it home. The things inside of that little yellow house don't make it feel like home. Its bigger than that. Its different than that. Blake and I had a long discussion about it Saturday evening as we went to dinner together just the two of us. This is what we figured out.

Our home is not made up of walls, of furniture, of things, or even memories. The thing that makes it home to us are the people who are supposed to be inside of those yellow walls. The people who sit together on that furniture. The people who use and enjoy all the things we have been blessed with. The people who we make our memories with. The people, Dave, Trish, Blake, Allison, and Ashley Kate are our home. No matter where we go, where we are, or what we are doing we are "home" as long as we are together.

As wonderful as it was to sit and talk, play and laugh, rest and relax there with my Blake and my Allie I couldn't help but still feel as though I was missing home. How can that be you may wonder? Last weekend I was still longing for "home". because "home" was not all it was supposed to be. Dave and Ashley were not there and that made me feel as though I had not truly made it home. I shared with Blake how proud I was of him and sister Allison. There job is much, much harder than mine. They walk into our house each and every day and have to face the emptiness that is there because Ashley Kate is not in the middle of the living room floor. There are no blocks to trip on, no toys lighting up, no Blue's Clues blaring, no baby. How difficult it was to see our "home" but not really have it be "home". Blake shared how sad it makes him feel when walks in and doesn't find Ash there. Her crib is piled high with all of her toys and they don't belong stacked there. They should be all over the floor and our baby should be inside that crib throwing them out as fast as he can pick them up. She should be in the middle of our home causing trouble, making noise, and keeping us on our toes. How do they face the emptiness day in and day out? My children are amazing. They are strong and they are acquiring wisdom far beyond their years. How proud I am to see how well they hold themselves together through the most frightening of days in their sister's life.

The night I arrived back at the hospital I was sharing with Dave how different it was to be home without all of us there and he nodded his head that he understood exactly what I meant. He shared with me that the hardest part of his day is when he must go to bed. Ashley Kate's crib is empty. She is not there and there are no ornery attitudes to deal with as he drifts off to sleep. He thought about putting the crib away because of how difficult it was to face each day, but then decided that he would not because that is where she belongs and she is coming back soon. Lying in my bed my first night home with my 10 year old daughter fast asleep on her daddy's side of the bed I found myself longing for those nights when I laid there thanking God that we were all together. I was so grateful. Not a day went by that I was not thankful for I knew how precious our "home" and our time in it was. I miss my husband. I miss his silliness. I miss his face. I miss holding his hand as I fall asleep. I miss how good he smells each time he passes by. I miss the person that he is and I miss being at "home" with him. I miss seeing him cuddle up with our baby and watching her rearrange his face each night. I miss "home".

Our home is not our house. Our home is our family. Our home is where our sweet Ashley Kate belongs and it where I hope to be taking her very soon.

Ash came out of the OR around 9pm and she is now resting in her bed in our room. I am on my way to the little store in the hospital to choose between a frozen burrito or a bag of doritos for dinner. Who knows I may have them both because its been a long, long day and when you at 10pm it doesn't really matter. Thanks for being here today. Your comments are a blessing as I take great encouragement from your words. You are such good "friends" and I love you for it. Goodnight. Trish

Theory

In theory this is what the doctor thinks could be happening.

That whole chylo thorax issue that developed a couple of weeks ago could be the cause of this fluid production and accumulation. This mornings x-ray showed that fluid is collecting in the right lungs plural spaces again. At this time we are not placing a tube, but it is a very real possibility that we could be soon. We are sending the fluid out to lab to check the triglyceride levels again. If they have remained high despite the change to a non fat formula then she will be taken off of feeds and placed on full TPN.

The plan is to take Ash to the OR between 3 and 5 today whenever there is an opening to have her line replaced.

She is fussy and uncomfortable today, but has finally drifted off to sleep and my hope is that she will rest throughout the afternoon.

Our stay in the PICU could last 2 days, 2 weeks, 2 months or anytime in between. The road is rough and unpredictable. Good days can turn bad very quickly, but bad can turn good just as easily. Again, I will say that the joy and happiness our Ashley Kate experiences on the good days far outweighs any of the bad. She is an amazing little person who melts our hearts and fills our home with incredible blessings. We love her and there is nothing we would not do for this child. Her life is precious. Not only to us but also to the Father who gave it to her.

I have so much on my heart that I want to share, but at this time I think I am going to rest for a while since she is resting. I am tired. Physically, emotionally, and spiritually. Rest would be good for my soul. Please let me say thank you to Priscilla. Your gift to me was so thoughtful and I am truly grateful for your kindness. To Kathleen I wanted to say thank you for the gift you sent to Ash. She loves to rub the little tags again and again with her hands. Fonda, your package was such a blessing. Thank you for remembering me and for making the air travel easier for me. The distraction was a blessing. Your letter was beautiful and encouraging as was the music. So many of you have such kind hearts towards us and the ways you choose to show them humble me. Thank you so much for your prayers, your encouragements and your thoughtfulness towards our family. You are a blessing to us.

Understanding

I do not. I mean that I don't understand this. This month, this week, this day, this night, this hour, this moment. There are so many things in this life that I don't understand, but still there are a few that I think I do.

I understand that He loves me.

I understand that He loves our Ashley Kate.

I understand that He sees the hurt inside of us.

I understand that my heart hurts for my baby.

I understand that even when it doesn't seem like it, the people in this place are trying to help my baby.

I understand that she is worth this and so much more.

I understand that many, many people don't understand me or my decisions.

I understand that my children, all three of them, need a mom. I believe that God understands that too.

I understand that my love for her is deeper than any I have ever known.

I understand that she was meant to be our daughter.

I understand that some where, some way, some day there will be good that comes from this experience and that He will be able to use it for His purpose.

I understand that it is not my job to understand but just to trust.

In my brokenness I continue trying to understand the difference between what it is I am supposed to understand and what I was never meant to understand.

Tonight I am just too tired to try and understand any more. I sit here in the dark and stare at this beautiful child whom I am allowed to love. Understanding does not come so I continue to stare. In one hour we will begin day 23 in this place and I don't understand why we are here and not in our home with Dave, Blake, and Allie. I pray that sleep will come and that my mind will shut down and allow me to stop trying to understand for just a little while. I want to rest because I know that even though I don't understand I am still going to trust. If I would truly trust Him with this night then I believe I will be able to close my eyes.

2/27/2008

Going the wrong direction

Today has not been a good day for Ashley Kate. Last night Trish was up every two hours and all her work paid off with a successful opening of Ashley's right upper lobe. Unfortunately that was the last of the good news for Ash today. She began to have more and more difficulty breathing today and and x-ray showed a re-accumulation of fluid in her left lung. There was enough that she has been re-admitted into the ICU and has had a chest tube placed in her left lung. She is not yet back on the ventilator but has had to go to the high flow oxygen mask. It really makes no since as for the last 5-6 days she has had very little drainage from the left chest tube. That is why it was pulled and so this setback is just hard to swallow. Ash has been poked and sticked tonight as they have tried to place IV's but with no success. She will be going to the operating room in the morning to have a central line placed. Our plans of bringing Ash home were premature.

Tonight I have 2 prayer requests. First please pray for Ash as she continues to fight. Pray for comfort and safety as the again undergoes invasive procedures. Please pray that this will be a minor setback for her. Secondly I ask that you pray for Trish. She is very heartbroken and homesick. She is a wonderful Mom and just wants to bring her family together again. She needs to bring Ashley home. Thank you for your faithfulness to our family.

Goodnight,

DAVE

PS please continue to comment as Trish can read them and draws much needed strength from your prayers and encouraging words.

Still Waiting


Ashley Kate and I are still waiting on the team to round today. We are anxious to hear what they have to say about allowing us to stay over here or if we have to move back in with patient population on the floor. I really can't tell you which way I think things will go because I just don't know.

I saw Ash's x-ray this morning. I'm not a radioligist, but it looked to me like there was a re-accumulation of fluid on her left lung. That fluid seems to be our number one enemy since transplant. Keep in mind that my eye is untrained to read the films, but I have seen them a time or two and it looks pretty suspicious to me. The right upper lobe in my opinion looks ok. Not great, but ok. Then again I did not see yesterday's x-ray so I have nothing to compare it to other than my memory of what it has looked like in the past.

Ash doesn't feel well again today. No smiles. No playtime. I am making her sit up in hopes of having her help clear the junk out of her lungs, but she isn't too interested in much of anything and she is so weak that she eventually allows herself to fall back on her pillow. I was able to capture a shot of her finding that "flower" page her daddy wrote about over the weekend in her new book. Thank you Camille. She sure does love books and from the looks of it she is going to love flowers just as much as her sister does.

She has no fever, but seems extremely pale to me. There is no sparkle or real life to her eyes. She is still requiring oxygen support and it her need for it has actually gone up a little bit. Not much, but a little. Her daddy said it sounds like she is headed in the wrong direction and I am afraid I would have to agree. We had SO hoped that she would recover and come home sooner rather than later. It is now seeming like the hope for Sunday's travel has all but vanished. To say I am not disappointed would be lying, but I am trying to stay strong and determined until she gets better.

Last night was really not bad and I'm not struggling today. I will probably require a short nap this afternoon, but other than that I feel great. I prayed and prayed and prayed last night. I so desperately want God to take us home. I want it now, but if that is not His plan then I have to get to the place where all I want again IS His plan. I'm not there yet. I know I need to be there, but we have been away from home for 22 days and it is starting to seem like a very long time. There is really never an easy solution for Ashley Kate. Things are either really good or really bad. No middle ground with this little one.

My heart is a little sad today as I had hoped that morning would return our little girl to breathing effortlessly once again. It did not. Her treatment schedule continues and will keep on continuing until we see drastic changes in her lungs abilities to function all alone again. Try holding your breath. Now try breathing as quickly and as shallow as you can for a couple of minutes. I wonder if this is how Ash feels as she struggles for air? Something that comes so easily to most of us is so difficult for her. Oh, how that makes my heart ache. I so badly want easy, carefree, effortless days for my daughter. I want grins and giggle to take her breath away once again. Not diminished lung capacity. I just want to take her home.
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2/26/2008

Is anything too hard...

..for our God? I don't really think so. He can do anything. Can He open a lung? I believe He can. Can He do it overnight? Sure, He can. I'm trusting Him to work in her life, in her body, in her lungs this very night. What more does He ask of me than to trust Him?

Tonight will be a long night. I will be up with Ashley Kate every two hours. I'm really kind of looking forward to it. I know that may sound silly, but I will be "doing something" and that encourages me. I would much rather be awake giving breathing treatments, therapy, and meds than lying there awake in my bed wishing there was something I could do to help my baby. I am believing God is going to begin a good work in her tonight and I am thrilled He is allowing me to play a part in that work. Just to be allowed to stay here in this room with the peace and privacy it brings to me and Ash is a huge work that only He was able to orchestrate. I am so, so thankful and I pray we are able to remain here taking care of what needs to be taken care of.

So if your awake along with me tonight I want you to know our schedule so that you might know what to pray for at that time. It goes something like this:

10:00pm - Breathing treatment to help open up her lungs and break up the consolidation inside of it. Our hope is that she begins to cough after this treatment moving the junk and opening up the alveoli.

12:00am - CPT. This is a sort of therapy treatment for her lungs. It is a percussor that I place on the front side of her chest where her upper lobe would be and then it "shakes" and "vibrates" the heck out of her lung working to open it up. I do this for two minutes and then I move it to the back side for another two minutes.

2:ooam - Meds

4:00am - Another round of CPT

6:00am - Labs are drawn and meds are given.

8:00am- More CPT and then a treck across the hospital to x-ray to find out if all the hard work is paying off.

9:00am- More meds. Another breathing treatment.

10:00am- Physical therapy

12pm - CPT. Rounds made by the team and a decision given about whether we are allowed to continue here or if we are moved back to the pediatric floor.

The rest of the afternoon continues with something every 2 to 4 hours and then we start all over again tomorrow night.

So this is what Ash and I will be doing. If you are up, join me as I pray for the Father to do a good work in her lungs and if He chooses not to pray for my heart to accept whatever He has in store for us next. Thanks guys for continuing to comment. Your words have made a difficult day a whole lot better. Your time here is so appreciated and I treasure you encouragement and your prayers. I love you guys. Goodnight and God Bless. Trish

Some days...

...You have to look hard, really hard, for the good that is sure to be found in them. Some days it just seems a little harder to try and overcome the obstacles you find placed before you. Some days staying in bed seems like the thing to do. Today has been one of those days.

Ash isn't having such a great day. Rounds brought much concern and we decided on shooting films this morning instead of waiting until tomorrow. I could feel the confidence of our team shifting. "We'll just have to watch her closely and see what happens." Not words I want to hear because I fear that it will lead to a location change for us. The x- showed the re-collapse of her upper right lung which may explain her higher respiration rate today. The good I found hiding behind this obstacle is that they are allowing me to administer breathing treatments and CPT here in our room today in hopes of popping it back open. Two hours ago I thought for sure they would move us back to the pediatric floor. So far we are safe and she is working hard on coughing and movements trying to clear that lung. This collapse may also be behind her requirment for that last little bit of oxygen support. Please pray for resolution of this issue over night for us. I am giving CPT every 4 hours and breathing treatments every 12. I would love for them to see her breathing more comfortably during rounds tomorrow.

This morning I received a call from Dave informing me that someone had taken a corner to quickly on our neighborhood street and had planted their car inside the front of our Explorer. Not good. On top of that the man responsible does not carry insurance even though he produced a fake verification to the police in order to avoid a ticket for no insurance. Our car has been cracked in half. The front end literally has a crack right down the middle. The entire front end is torn off and the radiator was split in half. Thats just what we can see from looking at it ourselves. Sometime this week the insurance and the mechanic will inform us of what the real damage is. So where in the world do I find good in this circumstance? Well, its good that my children had already been taken to school and they were not sitting in the vehicle waiting to leave. They are safe and that is good. On the lighter side of things, I was thinking just this weekend how dirty the car was and now I suppose that once it is returned to us(who knows when that will be) it should be shiny clean. Thats good. At least I think so. In the meantime Dave will ride his motorcycle, my mom will drive his car, and I live in Omaha at a hospital so I have no need for a car. See how things have a way of working out. With Ashley's latest set back I am preparing my heart not to anticipate going home so now we have no need of the Explorer this weekend and Blake and Dave will just catch a ride with someone to the baseball tournament in Dallas. It will be just fine.

And finally the good I have found in being forced to make our comments private from now on is that I have heard from several of you who have never left comments for us before. Thats so great! You can now write your words to our family and sign you name and know that it will be kept confidential. This must be really appealing because I have never had so many comments to read through and my heart is feeling very encouraged by you on this difficult day. So thanks!

P.S. Last night in the entry I had to remove about Blake I shared what the "perfect" gift he gave to Allie was. You would really have to KNOW our Allie well to know this about her, but she is out to conquer all the cranes in the world. Do you know what I mean? Those quarter gobbling machines that sit out front of the stores and in restaurants? She LOVES to feed them quarters and come out with a handful of junk to show for it. It is a passion of hers! Blake purchased her a miniature version and stuffed it full of surprises. Now she can practice her skills anytime of day for free! It was the perfect gift for his sister.

The Plan

Ashley Kate and I moved over to the cooperative care program last night. Basically we are in the Leid(which is the hotel portion of the hospital) except she is still considered a patient as opposed to being discharged. There are several reasons for this the main one being we want to watch her lungs carefully this week now that her chest tubes have been removed. The second one was pulled late yesterday afternoon.

What needs to happen in order for us to go home this weekend? A lot! She must come off of oxygen. To this point it has not happened. She is hanging on to that quarter of a liter to maintain a comfortable oxygen level. Her lungs must also stay clear of fluid now that the tubes are gone. We will be doing x-rays throughout the week to keep an eye on the effusions. She must come off of her lasix. This is a drug used to pull fluid off of the body. Ash has been discharged on this medication many times before and I'm not sure why it is different this time except there is a different doctor on this week. She is also going through withdrawals. Again we have been discharged on ativan and methadone before so I'm not sure this will actually keep us here. The last thing is her FK levels. They need to figure out what dose will give them the level they are wanting. I am drawing daily labs to collect that level. In my opinion she doesnt' look as comfortable today as she did yesterday. Her hair actually started falling out in huge clumps through the night which tells me her FK levels are too high. This may explain why she doesn't feel well this morning. So we have lots of things to pray about. As the week starts to wind down Dave and I will begin making travel arrangements if it looks like we will be leaving. Allie has soccer this weekend in Longview and Blake has baseball in Dallas on Saturday and Sunday. Ash and I would be allowed to leave on Sunday and this would keep Dave in the office for his patients on Monday. So there are lots and lots of details to line up to pull this off, but not too many for God to make come together. I know that.

The whole birthday post was pulled on purpose as was a beautiful post about my weekend with my son. I would like to say this and then put it behind me. You had better have hard facts about me and my family before you start spewing lies and accusations about us. The words that were written were the ugliest I have ever read on this blog and trust me when I say there have been some UGLY opinions given. If you are going to attack our character you had better be able to back it up because I refuse to allow you to make our son or our daughters ever wonder about who they are, who their parents are, or who their friends are. You were very, very wrong!

So I have finally taken the steps to disable comments. A tough decision I never wanted to choose, but I have. You are welcome to comment and I pray that you will because your words are SO encouraging, but our eyes will be the only ones who are allowed to read them and you will be required to leave a name of some sort. Make it up if you like, but I will no longer accept anonymous comments. You also have the option of commenting on our guest book if you click on the Ashleys website link on the left.

I also wanted to let you know that our office address is listed on the left side of our blog. Anything sent to Ash will be given to her and as alway your amazing kindness and thoughtfulness touches our hearts.

Sorry for this mess. It is truly not your problem, but mine. I hope none of you are hurt by our decision. Take care today and God bless. Trish

2/25/2008

Lots to say...

...but I won't. Trust me when I tell you its better that I don't.

Good night my friends. Trish

Good News


She looks great! Still a little weak and requiring some oxygen support, but just look at this sweet baby. I think she looks great. Morning rounds brought more good news. They are going to pull the second chest tube out this afternoon(it is finally as dry as the Sahara!) and then they are moving us out of the hopsital and over to the hotel. Thats good news! She will still require the use of her central line even though there are some problems with it. We discussed our different options and have decided the safest risk(if there is such a thing?) would be to allow it to remain and pray the vein doesn't clot off. It has moved position over the weekend and is now in the smaller subclavian vein running the chance of clotting and losing that access forever, but versus all the other complications and setbacks she could suffer from re-wiring or the OR or removal we have chosen this option. She will be requiring daily lab draws and x-rays through the remainder of this week and then IF everything goes perfectly and all the "ducks" line up then we could be headed home on Sunday. Thats GOOD NEWS!

Ash is still requiring the new formula without any fat and will be for a couple more weeks until the chylothorax completely heals and she will possibly require oxygen support for a little while, but other than that it looks like our little pickle has pulled through again. WOW! When I think of all that the Lord has done in her life it is nothing short of miraculous. Over and over and over again His mercy has been shown, His power has been proven, and His will for her life has continued. Simply amazing.

First thing she did when she opened her eyes at 5:30 this morning was grin ear to ear and hold up her "spiders" as she looked across the room and saw me. I giggled to myself knowing there was no way in the world I could deny that child a round of itsy bitsy spider this morning even though my body was screaming NO because it didn't want to get up.

My weekend home was so full of precious moments and I am going to share them with you this afternoon as soon as I put together some sort of slide show. I just wanted to share our potential good news before I ran to heat up some lunch.
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2/24/2008

I almost saw it

Ash has slept the better part of the day away. She woke up for a few minutes and I held her a bit but she was having a lot of withdrawal symptoms so we didn't get to play long before she fell back asleep. She again woke up around 7:30 and she looks much better this time. She is actively playing and at one point I think I almost saw her smile. She still feels kind of crummy, but it is good to see her active again. Her little arms are just moving a mile a minute as she shows me it is time to play Itsy Bitsy Spider. She particularly likes when the rain comes down and washes the spider out.

I just spoke to Trish, she is at the airport in Dallas waiting for her flight. She leaves at 9:30 and shoud arrive here just after 11:00. I hope Ash is back asleep by then so I can go pick Trish up at the airport. Trish had a great time back home for the weekend. She caught 3 basketball games and two baseball games so I know she enjoyed her time home. Based on the progress I see here I am hopeful it won't be to much longer until I am coming back to pick up my girls and bring them home.

Ash is playing while I type so I m going to try again and see if I can see it for real this time.

Goodnight,

DAVE

One down and one to go....

They just came in and took out Ash's right chest tube. I am so thankful to have it out because I know it is one step closer to home. I am really ready for her to get the other out, look good, and be on her way back home. Not so much for us and the separation and stuff, although that will be great, but more so because Ash is not happy here. She doesn't smile here, she doesn't laugh here, she doesn't show trust here and she just doesn't want to be here. I don't blame her. She knows that when she is here people come in and hurt her. She doesn't know that they are helping her, just that it hurts.

We love 99% of the people here, but there are some I could just do without. The Dr. who came to take at her chest tube stood there and lied to my face, and I don't much care for that. He told me that this would cause absolutely no pain. I could see is nose growing. He told me she won't feel a thing and that he would not even have to touch where the tube was exiting. Growing some more. He said if she cries it is not because it is hurting. How stupid does this man think I am. I am glad it came out, I just know I could have done a much better job of getting it out. Some people should not be Dr.'s and this guy is one. Sorry to vent because most here are wonderful, but not all. Just tell me the truth, it is going to hurt her and she will cry but I will do it as quickly as I can. Tell me the truth and I will respect you. I am ready to get her out, get her home were she will be cared for with the gentleness of a family who loves her.

Thanks for all your prayers, sorry for the negative tone of this post, I better stop now before I say something really ugly.

DAVE

2/23/2008

Nothing to report


The title sums it up. The evening was uneventful. They never came to remove one of the chest tubes. At around ten, just after Ash fell asleep, the nurse told me they called to say they were coming up to get an x-ray and then would remove the chest tube. I had her call back and cancel it until tomorrow morning. I wasn't going to let them wake her up and do all that tonight, they are crazy.
Goodnight,


DAVE

The vent is going away

Wooohooooo, they just came and took the vent out of Ashley's room. I'm glad it was here but I sure I love to see it go.

Ashley's Story


Anonymous Anonymous said...

Hey! I have a question for you, Dave. I was wondering, what is the story on how you got Ashley, if it isn't confidential or anything?

1:03 PM


The details are confidential but the big picture goes something like this.

When Trish and I began dating some 15 years ago we started getting serious about marriage and our future together and such. When we started talking about family we both agreed that we both wanted to adopt a child someday, we began to pray about it. After we got married we discussed it more and then God surprised and blessed us with Blake in 1995. We continued our "planning" and a few years later in 1998 we were again surprised and blessed with the birth of our first daughter Allison. Well, we finally learned what was causing these kids (wink...wink) and took action to make sure it didn't happen again. We knew in our hearts there was still room for our family to grow, but it was going to have to be another way. We went through a number of years where Trish would be ready to adopt and I wasn't, then I would be ready and she wasn't. You know how married couples can be...She is hot and I am cold......She is cold and I am hot....the man wants to watch real TV and the woman wants to see what's on Oprah.....you know. At Christmas of 2004 Trish and I began talking about adoption and both decided God was leading us to grow our family. We began to pray, us, Blake, Allie, we all prayed for Gods direction for our family. The summer of 2005 God placed someone in our lives who He used to bring Ashley to us. That is all the detail I want to share. So in August of 2005 we met our daughter Ashley Katherine Adams for the first time. After some legal Mumbo Jumbo we headed to Medical City in Dallas and walked in a Neonatal Intensive Care room with 3 tiny babies. Trish looked in the isolation bed and said "there she is, that is Ashley" before a nurse had time to show us which baby she was. God had answered our families prayers.



You can see that first night by clicking here.

If you want to know how she ended up with the transplants click here.

More good news today.

We have had a busy morning. We slept in until about 9. I have been wanting to do that for a long time. When I finally did get up I gave Ash a bath and dressed her in a cute little pink ladybug outfit. Next, I began doing the housecleaning. Who would have thought such a small room could get so cluttered. I then stopped and read a few books with Ash. Next, I took my own shower. The plumbing here cracks me up. They are actually shutting down the whole PICU and moving it because of the plumbing. I turned on the shower then I pulled on the knob some more because I was sure I must not have gotten it all the way on. But I had. It was barely spitting any water out. When I climbed in I had to scooch up against the wall to try to get under the pathetic little stream of water. It made me laugh. After my spit shower we moved out the hospital bed and exchanged it for one of the cribs. The good part about this is that it means she is making progress, the bad part is that it is a tight fit when I climb up in the crib with her. Then I pulled our favorite green chair over by her and got to hold her for about 15 min. She began getting a bit restless so I put her back in the crib. Once she was settled back in the crib I rearranged some furniture and gave us a lot more living area. I think I doubled the size of the living room. Next, the Liver team came on rounds. Good News, she is progressing great. The plan is to remove the right chest tube today. The left one has slowed its output greatly and hopefully it will be coming out in the next few days. Her O2 has been weaned down to 1/2 Liter and that is only one small step from being gone. They started her feeds back at 25cc/hour and if she tolerates well for four hours she will go back to full feeds. I know she will do well today. She is going to do all the things they are wanting to see today. After rounds a package came in the mail. I opened it and found 2 cute little surprises for Ash and a special snack for Trish. One of the prizes for Ash was an Alphabet texture book. Ash loves these. I opened the book for her and was surprised to learn that my little gherkin is a speed reader. I didn't know this about her. She did a great job going through each page until she got to the end. She then began reading backwards until she found the F is for Flower page. This is definitely her favorite page. The center of the flower has purple glitter and she loves the run her fingernails over the rough texture. She cracks me up because she doesn't care for the soft fluffy textures, she loves the rough ones. We have read the book 4 or 5 times now and each time she searches until she finds the flower and then hangs out on that page. Thanks Camille, she loves it.

So what is left to do for the rest of the day. Well first I would like to go get some lunch. Then when I return I think I will do her nails. She certainly is in need of a manicure and I will do a pedicure just to keep those toes pretty and pink.

Now I know why we don't always get morning updates from Trish, I started this post this morning and it is about 1:15 and I am just now finishing it. Crazy.

Thanks for your prayers,love and support, it does not go unnoticed (is that really a word?) it helps us more than you will ever know.

As far as pictures go I would love to show you how good she looks, but the camera went back to Texas and won't be back until very late tomorrow night. We will get some when the camera makes it back.

DAVE

2/22/2008

What is a Gherkin....revisited

Anonymous Anonymous said...

I am new to your blog and was wondering, why do you call her pickle and Gherkin?

At 10:49 PM,


Click here for the answer

Camouflage


I just read the comments and found this:

Anonymous Anonymous said...

Buy that girl some camouflage, take charge!!!

4:42 PM


Well I for one think that is just a dandy idea. I do believe I will wait til' she falls asleep tomorrow and I will just run to the store and pick up some nice camouflage outfits for her. However there is one glitch in this plan. I will have to So Long to each of you because when Trish returns and finds the littlest pickle in camo's I do believe I will have two people in the hospital. Ash in the PICU and myself down in the ER.

On second thought, I think I will just remain a pink little Nancy boy. Maybe I will go find a car and change the oil or something. Hmmmmmm What would Captain Kirk do in this situation. .....Ponder.....Ponder.......Ponder..........

DAVE


She looks great

Ash has been off the vent for about 7 hour now and she is looking great. Right now she is sitting up on her own and has been for about 15 minutes. She is completely bored with all of her toys so she began playing with one of the bags connected to her chest tube. I really didn't think that was such a good idea so I took it away from her. Now she is giving me the silent treatment. So to make it up to her I gave her a bucket full of saline syringes. Each syringe is individually plastic wrapped and when she grabs them they make what must be a really super duper cool if your 2 years old crinkly sound. She got them all out one by one and crinkled each. After that she took one syringe and started beating the bucket like a drum. That made me laugh. I think she has worn herself out because she just got a very very not so happy look on her face and I had to go help her lay down. She has used up all the energy her little body could muster.

Thanks for all your love and prayers today. I know it is making a difference for our tiny gherkin.

Goodnight from Omaha,

DAVE

Bye Bye Vent!!!

They just extubated Ash at 2:15. Woohooo.... So far she is looking really really good. She has only been off for 15 minutes but she is having oxygen saturations of 100 on 2 liters of O2. That is a much better start than she did last Sunday.

Ash personally does not seem as excited about this adventure as I do. I guess that is because she is the one with the really sore throat and the holes (chest tubes) in both of her sides. In rounds this morning they did mention perhaps taking the chest tube out of her right side today. I do hope that happens because it will be one step closer to her coming home.

Please be in prayer specifically for Ash's ability to breath today. Let's pray that she can stay off the vent. If she can make it then we will be out of here and back home before to long.

Now it's off to the laundry room for me. Does a grown man folding a bunch of pink blankets and all things pink baby clothes make him a Nancy boy? I hope not.

DAVE

Ready to run

Ash woke up around 8 this morning and she is a flip flopin' around all over that bed. I have no doubt she is ready to get that stinkin' tube out of her face. She must have overheard that today is the big day as she is ready to go. I know she will do great just by looking at the level of energy and spunk she has. She is probably thinking the same thing as me. What is up with hospital time? If today is the big day let's get on with this.

Sleep? Who needs it!

Well it is now 1:30 and Dave has gone in to the waiting room to look for an available couch to take a little nap on. He finally arrived about 30 minutes ago. His plane from Dallas to Omaha was delayed several times causing him to arrive two and a half hours later than planned. Ash was already sleeping so she has no idea he has come to spend the weekend with her.

I don't think I will sleep tonight. So many, many things running through my mind. I have to be up at 4am anyway so laying down would be kind of pointless. I just jumped out of the shower and still need to dry my hair and empty my purse making sure I don't have any hidden tubes of toothpaste or anything dangerous like that. Dave is just so funny. I told you he makes me laugh every single day. I love that guy and I am so glad he has made it here safely. I decided not to take anything home with me. Only my purse which actually seems kind of pointless to carry now that I realized my debit card was accidentally thrown in the trash with my lunch. I honestly don't know how I could have been so irresponsible, but I was and it is gone. Who knows what I was thinking and how in the world did I not figure it out until 6 hours after the fact? !

Well, I have no idea what I did but the next 3 paragraphs just disappeared from the screen. I guess that means I'm too tired to be blogging. Silly me, I had some really good things to say. I suppose I will just save them for another day. Maybe Saturday or Sunday since I will be running on pure adrenaline and determination until around 11pm tomorrow night. I can't wait to tell you all about Al's birthday.

Hope you all are sleeping by now and hope that you all have a blessed day tomorrow. Thanks for praying for us guys. Take care. Trish

2/21/2008

In Dallas and so far so good.


Trish asked me to "bring my toothpaste back." Apparently I inadvertently took it with me when I left on Monday. So in all my rush to get things done today before my flight I moved the toothpaste to the top of the list. I needed to take some things by the CPA and I really wanted to go to the bank and get some cash, but I opted to skip those things so I would have time to get Trish's toothpaste. I bet you can guess what happened next, yep my nemesis, the TSA guys, were there waiting to hassle me at the airport. Just a side note, why do the TSA guys wear those blue gloves? My best guess is that they are afraid they will get Koodies or is it Cooties?, when they are poking around all our stuff. Sorry, back to the story. I thought I had done it all correctly, you know the little plastic bag to hold all the liquids and toothpaste and all. Sorry Trish, but they stole your toothpaste and they stole mine too. I suppose I do look suspicious enough, might have brought down a plane by mixing the two toothpastes together you know. I'm just joking, I really do feel safer having these guys around. I sure am glad the government took over security. The guy on the left did kinda have me and the other passengers freaked out. Who knows what could have happened if the TSA guys hadn't been there.





Well it was really really foggy at the airport today and although I don't have the fear of flying Trish does, the fog did cause me a bit of concern until it happened. The flight attendant came on to welcome us and introduce herself and the crew.....crackle cccrackle screech crackleccle...."Good evening ladies and gentlemen and welcome to flight blah blah blah from Longview to DFW. My name is Mary and your flight crew today is," OK are you ready for this I am not making this up, "Captain Kirk and first officer Rebecca." After a little chuckle I knew I had absolutely nothing to be concerned about. Dang!! we have Captain Kirk driving. A little fog?? Laugh, laugh, we could have fog, rain, hail, tornadoes, hurricanes, monsoons, Clingons, Romulens, whatever, I knew we were gonna be just fine. And not only did we have Captain Kirk, but we also got Rebecca!! The whole package.


We landed in Dallas and did our taxiing around and stopped a mere 12.4 feet from the gate and then............and then.......... and then.........Nothing! Absolutely nothing. After about ten minuets Captain Kirk came on and made the announcement. ....cracckckle cccrackle cracccle...."Ladies and gentlemen we have arrived just short of the gate, we are waiting for the ground people to arrive, we will be delayed a few more minutes." ....crackle cccrackle screech crackleccle.... What the heck is Captain Kirk talking about? We are 12.4 feet away. Just put your phasers on stun and move forward 12 feet dude. Is there a pothole,wormhole, black hole, in the next 12 feet? What is man? Now, the best I can tell we did have a slight problem, yes, the guy with the 2 orange sticks was not there to tell us where to park. However, I did figure that Captain Kirk could have handled this one his own I think what really happened is that sly Captain Kirk was probably up there kissing on Rebecca for the last 10 minutes, yes sir, he always gets the girl.

So now I sit for 3 hours while I wait to hitch my next ride to Omaha. I really am excited about seeing my little pickle. I hear she may come off the vent tomorrow and I am really excited about that. Trish, so sorry about the toothpaste. I will go find a nice restaurant and have a nice meal and prepare myself for the next flight.

I do hope Captain Pickard and first officer William Riker are there to greet me. "Make it so Number One!"

DAVE

PS at the risk of sounding like a Nancy boy I have to say this. Allie received some flowers and balloons at my office today. Those were the prettiest flowers I have ever seen. I know Allie will love them so I am sending my thanks to Florida today.

Drinking Her In

It's 12:30 and our sweet Ashley Kate remains asleep. She looks so very peaceful as she rests. I love to watch her while she's sleeping. So still, so sweet. Her eyebrows scrunch every once in a while and I wonder what she is dreaming about. Her long lashes curl so perfectly and I absolutely love them. Both of our girls have the most amazing eye lashes. Her little nose is one of my favorite parts of her. How I love to run my finger across its bridge. I can truly say that she is one of His most beautiful creations. I have rarely seen anything more beautiful than Ashley Kate. I stand in awe of what He created, and as I drink her in I am humbled that I am allowed to love something so precious.

Her tiny fingers wiggle every once in a while and her feet cross at her ankles. Even while she sleeps she evokes such strong emotions in my heart. I have really learned to be grateful, to be humble, to be willing to love through her life and experiences. Are there things I would change? Of course there are, but what has occurred in our hearts and our home as a result of this child and her struggles may have never come to pass without this rough journey. If I could take her pain, her frailty, her tough days from her I would, but what joy God has placed inside of her on the good days. What happiness and silliness and orneriness He put inside of this tiny pickle. I love her so much. I love His creation. I often find myself thinking, "but I never asked for her to be so beautiful." (Usually my next thought is that I never asked for a healthy bowel either and I wonder if that would have made a difference in her life?) Nevertheless, He provided for her and she is here serving His purpose in our hearts, in this place, and in this world. This morning I am thankful for the quiet hours I have been given to drink in this child of mine and to drink in His presence in her life.

What I am going to share with you now is a mixed blessing. They are planning to attempt extubation again tomorrow. Joy. Panic. Excitement. Fear. Doubt. Hope. These are all very real emotions I am having about this plan. More than anything I want the rise and fall of her chest to take place because her body has the ability to make it happen again, but at the same time this ventilator brings me a security as I prepare to leave. How I wish it were today so that I might be near if she needed me. On the other side of this I find myself excited over the possibility of her and her daddy having the opportunity to enjoy their weekend together free of breathing tubes, suction catheters, and discomfort. How good I know it will feel to our baby to be held for the first time in two weeks. What joy floods my heart as I picture her snuggled up on her daddy's lap for 3 precious days. Tears sting my eyes as the memory of last Sunday comes to me. Please, God allow her to be successful. Allow her to breathe again, to laugh again, to play again.

On top of all this Dave and I are facing a couple of decisions today that weigh heavy on our hearts. Each and every choice we make for Ashley Kate is important and we take them seriously. The hospital has a huge population of patients with influenza this week and we would ask you to join us as we pray that Ash will be spared from this virus. This is probably the most dangerous time of year to be a patient, but I have to remind myself that God knows this and that He has the ability to protect her. Every day more and more of the children are testing positive for it. Pray for guidance as we choose what options would be best for our little one at this time.

Thank you so much for loving our baby gherkin. I hope she is a blessing to your heart as you watch all that God does in her life. Your presence blesses me and your prayers strengthen me. What a kinship I feel with all those who follow her story. Thank you again. Trish

2/20/2008

Preparing my heart

Dave did it. He was able to figure out a flight schedule in order for the two of us to switch places this weekend. He should land here in Omaha sometime tomorrow evening(11pm I think?). I will leave Omaha bright and early Friday morning and be in the air by 6am. I land in Dallas around 8:30 and will be picked up at the airport to make the 2 hour drive home. Once we pull into the drive way I will hit the ground running. Allie's party begins at 5pm and will go until 9:30pm. What an amazing night of fun we have planned. We have worked on the details of this celebration for more than 2 months and I can't believe it is finally here. Saturday morning I will attend Allie's basketball game, then that evening Blake will play in 2 basketball games. Sometime Sunday afternoon Blake has a baseball scrimmage and I plan on attending as much of it as I can before making the long drive over to Dallas to catch my plane and then I should land in Omaha around 11pm. Dave then leaves on that 6a.m. flight Monday to make it into the office by 10a.m. Whew! That took a little planning.

As I think of leaving Ash here in the hospital my heart rate increases and I start to panic just a little. Not because I don't trust that her daddy will take good care of her, but because I have never been the one to be 700miles away from her. I can't imagine getting a phone call like the ones I have had to make to Dave more times than I can count. I am really nervous about going home without her. Things can happen so quickly with her and if they took a turn for the worse I would have no way to get to her. I have no idea how Dave has done what he has over the last 2 years. His strength and his faith are amazing. He is forced to lay it all the Father's feet. I on the other hand still battle my nasty habit of picking the burdens back up and trying to carry them all on my own. It is a daily struggle for me to just keep trusting. I want to make her better. I want to fix things for her. I want to pick her up and make it all go away. I am still learning. Everyday I am learning.

On the other hand the excitement I feel about being there for Allie's birthday is growing more and more each time I talk to her. She is excited so I am excited! Not only is she excited, but Blake is excited for her. He has been saving his money for a long time to buy her just exactly what he KNEW she would love. Tonight he called to tell me that he finished getting her gifts and that it was all ready. His excitement over giving her the perfect gift is absolutely contagious. I can't wait for him to see her open what he chose for her. He's right about finding her the perfect gift. I know when our family sees it they will all agree that it was perfect for her.

The details of the party are vast. I would love to share them but it would take me an hour to do it. I think I'll wait and have Dave post a slide show of pictures. Just trust me when I tell you that it is a wonderful mix of growing up but still being young enough to have tremendous fun. It hasn't even happened yet and she has exclaimed on more than one occasion, "Mom, your the BEST!" I'm just going to love every single minute of watching her have a magical evening with her closest friends.

My heart is torn between knowing how much I need to be home for this party and knowing how fragile Ashley Kate remains. These are gut wrenching decisions we face. Knowing when we need to be home, but also knowing we need to be at the hospital with Ash. It will always be this way and I don't think it will ever get any easier. I'm sure there are some who would love to tell me how we do it all wrong, but I'm going to ask you to keep that opinion to yourselves. I really don't need to hear all about it. The fact remains whether people agree or disagree that I am a mom. A mom to Blake, Al and Ash. I love them all with every last part of me and I want to be there for each one of them each and every time. It just can't be that way right now. So if you think about it tomorrow will you please pray that God might prepare my heart for this trip. Pray for protection of our little pickle while I'm away. Pray for precious moments with my amazing son and my beautiful daughter back home. Pray for me as I walk on to that airplane and face one of my biggest fears. Flying. I hate to fly and would only do in order to be with my children.

Its going to be a busy, busy weekend! By the way, Ashley Kate is making the sweetest looking spiders while she sleeps. I kid you not! Eyes closed and those tiny hands forming spiders above her breathing tube. She must be singing inside. I love this baby! Good night my friends. Trish

Worth the Wait?

I am experiencing technical difficulties and I know it is only happening because I said I would share pictures with you this afternoon. I have been trying forever to get them to post and this is the only one that has worked so far. For some reason blogger isn't allowing me to post multiple pics today. This isn't even the best one. It just happens to be the only one this silly computer will accept for now. So here she is. Sitting and reading books while watching Blue this morning after her bath.



I know her daddy has been standing in line to see her playing in the pictures today so he will definitely not be disappointed that only one will post. I'm sure he will think that it was "worth the wait". I will continue trying to figure out what is up with my blog, but if I can't get it to work then you will just have to forgive me.


Ash is able to sit without support for about 45 seconds. This is actually a huge accomplishment after being flat on her back for 13 days. I was so proud of her. Her body was really shakey and she was afraid to lift her head up, but she actually put her hands on the bed to help stabilize herself. We have been "practicing" several times today and she is now resting from all her hard work. I am hoping it wont take too long for her to regain her strength once she is off of the ventilator. Her rate on the vent is down to 6. This means the machine is only providing 6 breaths per minute for her and she is doing all the rest on her own. From my count she is taking 8 or 9 shallow breaths and then she gets one big breath from the vent and then the cycle starts again. She is really, really close to doing it all on her own. The silly thing is that she was on a rate of 4 before we attempted extubation Sunday and she was doing great. That is until we took the vent away and then she tired out and couldn't keep it up. I think they are going to try again this weekend. All of the data tells us she should be successful, but thats what we thought last weekend as well. I guess after seeing all she went through Sunday I am just a little nervous about trying it again. Like the doctor said, "We won't know for sure is she will be successful until we remove it and she proves that she is. Failure is just the risk that has to be taken."

Inspired...

..by this child whom I am allowed to call mine. She amazes me. Her strength and determination puts mine to shame. What a beautiful little person He created when He formed our sweet Ashely Kate.


She is sitting up (while on the ventilator) playing and behaving as though none of this has phased her. So what if she can't breathe on her own. Who cares if she has 2 chest tubes coming out of her side. Fluid on her lungs? She doesn't care today. She was bored and decided to do something about it. I wish you could see her playing.

I read something this morning. "Where there is hope there can be faith. Where there is faith miracles can occur." What a testament to our God! Because we have hope in Him we have our faith. Because I rest assured He is who He says and He does what He says my faith is strong enough to believe He is working another miracle in our Ashley.

I'm going to try and explain a little better the whole chylothorax issue. This is what I read.

A chylothorax is the build up of chyle, a milky white fluid in the space surrounding the lungs. This makes it difficult to breathe.

Chyle is a normal fluid produced in the bowel when we digest food. It is milky-colored when fatty food or drink is digested. The chyle fluid is carried around the body by lymphatic vessels. These are much like the network of blood vessels throughout your body. The lymphatic system carries fluid, fats, proteins and infection fighting cells.

The lungs are surrounded by several layers of a protective lining called the pluera. Fluids can collect between the pleura layers(the pleura space). A chylothorax happens when the lymphatic system starts leaking fluid into the pleural space. The fluid pushes on the lung, making it harder to breathe.

If surgery or a procedure on the chest has been performed a lymph vessel may have been injured by surgical instruments or by muscles being moved.

Treatment:
Doctors can drain a chylothorax by temporarily inserting a chest tube(which Ash already has and is thought to have caused it). Another way to remove the fluid is by inserting a needle into the space around the lungs. The fluid is pulled out through the needle into a syringe. Once the amount of chyle and fluid begins to taper off and dry up the chest tube will be removed. This may take a little time. Sometimes these treatments may not clear up the chylothorax at which time your docotrs will discuss other options.

So this morning we think the fluid has already begun to change color and consistency with the formula change. The amount is still fairly high, but we are thankful for the small changes we already see.

Ash doesn't even look like she belongs here anymore. Her color has returned. She is awake and alert. Obviously she is weak and shakey, but remove that breathing tube and those chest tubes and she looks like her happy little self. She even has a hair bow on today. Our hope is to remain strong in our faith today and to allow God to work miracles because of it. I'm holding on to that.


She remains on essentially no support from the vent. She is on the lowest settings possible, but there are no plans to make changes. They hope to try and remove the tube this weekend again. After seeing how it went last Sunday I am more nervous than ever about leaving for home on Friday. Again, we have to remain strong in our faith because of the hope we have that He will work more miracles in her life.

I hope you all have a blessed day. I'll share some pictures of her playing later on today. Take care. Trish

2/19/2008

Complications

Ash has presented with a complication. For days the fluid that is being discharged from her lungs has turned from a clear fluid to a milky fluid. We sent it out for testing to see if the triglyceride level was higher than it should be and last week it proved not to be. We were all a little confused, but accepted that what they thought was happening to Ash had not. Today they tested it again. The level came back 3 times higher than it should have proving that she had suffered a chylothorax. From what I can tell it is an injury to her thoracic duct and lymphatic system. Basically our best guess is that it occurred by accident when her chest tube on the left side was placed. What is happening is that lipids or fat is leaking out of her lymphatic channels into her plural effusions. What do we do about it? We remove all fats from her diet. Since all she is fed is formula we have put her on an elemental formula that has no fat content in it. As we wait for it to heal (which could take weeks to months meaning the chest tube will have to remain that long) we continue testing the fluid and wait for it to return to the normal pink tinged clear fluid that should be coming out. If it doesn't work then she will be taken 0ff formula completely and become TPN dependent until healing occurs. The fellow came in this afternoon and was trying to explain it all to me and finally she said, "All I can tell you is that this chest tube is going to have to become as dry as the Sahara before we pull it out." It was at that point that I felt the walls caving in and begin to overwhelm me. In extreme cases of chylothorax it has to be corrected surgically. I don't even want to think about that.

So this evening I am feeling discouraged. Wondering when and how we will make it back home. My heart is sad and I tell myself that God has not been taken by surprise. Even though I KNOW that to be true I stare at that little pickle lying on the bed across the room and wonder just how long it will be before she is back in her own bed. That's really all I want. Her home. Her bed. Her family.

The whole vent issue is a long story as well and to be honest I am just emotionally drained. She will more than likely be on the vent all week long because the plans have changed again with the change of physicians. They rotate weekly and it seems they all do things differently. She remains on the lowest vent settings possible and that is encouraging, but there is no plan to extubate anytime soon. Hopefully it won't be too much longer because she HATES the breathing tube.

Other than these issues it was a good day. Ashley slept for 12 hours of it. From 6:30am to 6:30pm. She woke up to sing "itsy bitsy" and then by 8:00 she was sleeping again. I told you we were exhausted! I was so thankful to see her resting and not withdrawing today. That was our blessing in the middle of all the other nonsense.

Now that I have completely rambled on and on and probably lost most of you by now I will close by saying how much we love you guys. This is an incredibly long road and I can't believe your still walking beside us. Thank you so much. Good night. Trish

His Gifts


Somedays He sends them at just the right moments. Sometimes they show up unexpectedly. Most days they blow me away and my heart can't hold the gratitude that wells up inside of me. He did it again. This morning around 2:30 He handed me a wonderful gift. You have to look closely at the picture above, but I assure you once you land on it you won't be able to keep from smiling back.

I think its BEAUTIFUL! I hadn't seen her smile for so, so long and oh my heart longed to see it again. If she can manage a smile in her circumstance then I can too. Its going to be a good day. What an amazing gift!

She and I smiled and played for over 3 hours this morning. She had just been given a little boost of ativan because her withdrawal symptoms were keeping her awake and in trouble. It did the trick. Her jitters and picking stopped long enough to give me some of the most precious moments to hold in my heart. We sang, played peek a boo and patty cake, and then I laid next to her on her bed and allowed her to touch my face, my eyes, my hair, my whatever she wanted to. It felt so good to be that close to her. I even had the privelage of seeing her "spiders" come out over the top of the breathing tube. They were a little shakey and uncoordinated, but they were definitely there and I couldn't help but cry as I watched her convince me to sing it again, and again, and again.

We were awake for the rest of the night. She just can't sleep. Finally around 6:30 this morning her eyes closed and they still haven't opened. We have moved her, taken x-rays, massaged her hands and feet. Nothing is working. Her heart rate is the lowest it has been on 2 weeks. This baby is snoozing. She is absolutely exhausted. Her mom is too. I think I'm going to sleep for a while this afternoon.

Nothing can top the gifts given to us by the Father. He knows exactly what we need and how to bless us. My heart was truly overwhelmed. I love this sweet girl so very much and what an encouragement it was for my heart to receive this gift. I hope to see it again soon, but even if I don't I now know that she still has it in there. Thank you, thank you, thank you Lord for lifting my spirits in the early morning hours.
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2/18/2008

Not Good, Not Bad

That pretty much sums up the day here in our little piece of the PICU. The plan for the day was strength training. It never happened. They feared that Ash was just not recovered enough from the trauma of yesterday to really give it a go. Her respiration rate on the vent was set on 10 and she was over breathing it by 50 giving her a total of 60 respirations per minute. We checked her blood gases and they were perfect, but the doctor decided to give her 24 hours to rest and recover before really getting to work. So like I said it wasn't bad, but it wasn't good. They or I in no way want Ash to fail the sprint trials.

I have an issue with that word. The word fail. I am far too competitive a person to like a word that means you weren't good enough. I remember the first time her doctor in the NICU labeled her as "failure to thrive". I was upset! I know its just a term used to describe not having the ability to eat and grow, but it didn't set well with me. To be honest it really hurt my feelings that they thought she wasn't "cutting it". I never really forgave him for calling her that. Every day on rounds I would tease him and remind him that it wasn't an option to say that Ash was failing. Yesterday the knowledge of her failure stung my heart again. Couldn't we say it a little nicer? I want to think of it as a practice run. Acknowledging that she failed to breathe on her own is just too much for me right now. I don't really want to think of it anymore.

Ash spent the afternoon sleeping. After staying awake far more than she slept last night I knew she would be exhausted. She is really agitated today. No blankets! No talking! No touching! No anything! She has tremors in her hands and feet from withdrawal. They are giving her just enough medication to make the vent tolerable, but she is not sedated and she is not happy. They began a small dose of ativan and methadone to help her as she withdraws, but she is still having to learn to cope without the help of the sedation medications.

Our hearts desire is for Ashley Kate to become strong again. At this time they have identified no source of infection. Our best guess is aspiration from all of the vomiting she had done. Since our admission she has not vomited one time. Thats 12 days in a row without throwing up. The cellept was stopped almost immediately upon arrival. We are hoping that was the cause of her trouble. So if I really stop and think about it then perhaps this was all about finding the source of the vomiting? I'm not sure, but if we have truly identified the problem and it ceases to occur then maybe this was all worth it and maybe she won't have to endure the daily vomiting episodes. Just maybe?

I know in my heart that her spirit and the twinkle in her eye will return once she is off the vent and breathing comfortably. I just know it. Right now she is being so good and so tough as she waits on her lungs to heal and grow strong again. I am so proud of her. She still amazes me. I hope this will be her week. The week she gets strong. The week she learns to breathe again. The week she returns with every bit of that ornery streak she is so famous for. I miss her personality!

Thanks for checking on her today and thanks for your continued prayers. Have a good evening. Trish

Strength Training

By all standards and from all view points (the vent settings, lab work, and appearance) Ash should be breathing without the help of the ventilator. The best anyone can figure is that her body is just weak. Her muscle's have gotten pretty lazy over the past 12 days, and they don't have what it takes to rebound at this time.

But... we have a plan. Strength Training. Its not pretty. It never is. If you have ever been involved in any type of athletics you know those dreaded words. Its hard work. You get tired. You become winded, but oh what a difference it makes. This is our plan for Ashley Kate. She will go on a strength training regime that will hopefully bring her around to breathing again on her own by the end of the week. We hope! 4 times a day for 2 hours she will go on CPAP. This is the sprinting mode that she was on yesterday. Even though she did awesome and even though her blood gases showed she was doing well her little lungs and chest muscles were just to weak to keep it going. So she will practice and train for the big day.

The only kink in this lengthy plan is that the longer she is down on the vent the more at risk she is for picking up a secondary infection. The longer she requires the ventilator the longer she requires her central line for TPN and she runs high risk for acquiring a line infection.

She is awake and alert. Not too happy about being stuck flat on her back and having a tube shoved down her throat, but alert. Her eyes don't sparkle today. They are actually very sad, and that is proving to be hard for me to see. We are reading books and she actually lifted her hand to turn the page(only once, but at least she tried), singing songs, and watching Blue together. She has been awake since 2:30 this morning and I know she has to be exhausted, but she is refusing to close her eyes. She always gets insomnia when she is hospitalized and now that her sedation is almost completely turned off she is struggling to rest. Her chest x-ray looks better today and for that I am very thankful. I also find myself being thankful that we have been given another day to spend loving on our baby.

Thanks so much for praying us through another difficult day. Your presence here has never been taken for granted. We know better than anyone how much support you give to us and how little negativity is out there, but it doesn't keep those negative words from stinging at our hearts. Especially after a day like yesterday. Take care my friends. Trish

2/17/2008

Tried, Failed,and Tired

Ash was taken off of the vent. She tried to breathe on her own for 3 hours, but eventually failed. She is now back on the ventilator. I can't tell you how difficult the events of today have been for us. I stepped out of the hospital for the first time in 11 days. I hadn't seen the sun or felt fresh air for 11 days. I thought I would run to the grocery store and then pick up a few items for Ash. As soon as I arrived at the store Dave called me and I started running. The images I saw as I walked into the room are not ones I ever care to see again. It is traumatic to watch your child struggle for air all the while knowing that without that air she can not survive. I pray you never, ever have to walk in our shoes.

My heart aches tonight because I know that all over the world there are mothers who lost the fight for their child's life today. I know that it happened here in this very hospital today, and I know that it is only a matter of time before Dave and I will be at the front of that line. For now our place in that line is exactly where God has us. So I say this with the most love that I can muster at this moment. Question us if you like, condemn us if you feel you have that right, and judge us if that is truly your God given right, but until you are standing next to me in this line you will NEVER understand what it feels like to be us.

I'm tired. So very tired of trying to defend the decisions we feel God has led us to make for our family. You will never meet children who are more loved, more cherished, more appreciated, or sacrificed more for than our Blake, Allie, and Ashley. I dare you to try. They KNOW without a doubt how special they are to us regardless of what the world may think.

I am in this place because God Himself handed me the gift of a lifetime and I intend to take the very best care of her that I can. I will never apologize for that.

Love your children like there is NO tomorrow, because there may NOT be. I urge you to just love on them.

Still Runing

Ash is running another sprint. Perhaps we should call this one a marathon. It is supposed to last for 4 hours. I don't about you, but I have never sprinted for 4 hours! Anyway, if her blood gas at 1:00 comes back with good results then they will remove the breathing tube and she will attempt to breathe on her own for the first time in 11 days. Its a BIG step toward getting her home. Then the goal will be to get her breathing without the support of any oxygen, but we will tackle that another day.

On another note, Dave is running a marathon of his own this morning. He has been on the phone for a very long time trying to figure out how to fly here next weekend, land, fly me home for Allie's birthday, then get my return flight to land here in Omaha before his leaves to take him back home to the kids. Lots and lots of juggling looking for flights that will work and fares that we can afford. All of this being planned as long as Ashley Kate has a good week and is stable enough for me to feel safe leaving her. Oh, how I hope these things will fall into place for Allie's sake! She and I worked for weeks on the details of this very special birthday. We wanted it to be amazing since I missed it last year. We have had so much fun counting down the days. She is growing up so fast and although I am sad to see that she is not really a little girl anymore I am so very proud to watch her as she becomes a young lady. It truly has been planned to be a magical birthday celebration.

I had to giggle at her requests when we asked her what she would like to receive for her birthday. In one breath she convinced me that she was grown up now and that she needed more" grown up" bedding for her room. With much sadness in my heart I allowed her to choose a more grown up style for her room. Next she asked for a chandelier to hang over her bed because she is SO grown up now. We found the sweetest chandelier that will give just the right amount of light for her to read by at night. In her next breath what she requested caused a smile to spread so wide across my heart that I couldn't help but giggle. Even though she has convinced us that she is "grown" she still thought she needed a new doll. Such a sweet combination for my heart to hold on to. SO grown up, but yet still young enough to long for a doll. I love this "little" girl and missing out on this 10th birthday would break both of our hearts.


We will be sure and let you all know how Ash does and if she is breathing on her own by this afternoon. Her daddy and I are cheering for her to cross that finish line and receive the prize. I sure hope she does. Trish

Sprinting

Ash has been sprinting on the vent through the night. That basically means that they turn the settings on the vent so that she is required to do all of the work herself. She made it through the first hour with beautiful blood gases. Her respirations were in 50-60 range which made the nurses nervous and cause them to turn the machine back on. Ashley's normal respiration range is 50-60. I tried to share that with them because I've been doing this a long time with Ash and I know her very well. She has always had a hight respiration rate. 50-60 is something we don't even get concerned about because that is her normal.

At midnight I was told they were doing another sprint. They gave me a good report on her blood gases, and then at 4am I was told they would do another one and check her blood gases at 6. This morning I was told they didn't allow her to sprint those two times. Why? No answer. It just wasn't done. I am a little confused and frustrated. The doctor wanted those sprints to prove that she could breathe on her own in order to remove the breathing tube this morning. All of that has been canceled and I am not happy about making Ashley Kate awake and alert all day yesterday and now all day today for nothing. If we have no plans of removing the tube and allowing her to breathe on her own then I would like for her to be comfortable. I guess thats just the mom in me.

Ashley has been on a ventilator many, many times in her life and has never been made to do sprints. She has met all of the required setting on her vent and looks good. I'm not sure why they are doing things different this time. I don't want her to fail extubation, but I really do believe she is ready. If she's not then lets turn her drips back up and make her comfortable.

I have positioned her in the bed so that she can watch Blue this morning. She hasn't seen it on over 10 days and although she can't smile I think she is enjoying it. She continues to shake her head "no,no" and to cry big tears every time someone approaches her. Being suctioned down her breathing tube is the worst. Now that she is awake she can feel it every time it passes down her throat and it hurts. She is coughing more and more against the tube and this causes her to be suctioned more and more. I just want this part of her recovery over with.

Please pray with me about getting Ash off of the vent. She would be much more comfortable without it down her throat. It is a huge hurdle for her to cross over, but I was a sprinter and a hurdler so I believe she can do this! To tell you the truth she is a lot more determined than I ever was so I know she can do this!