Ashley's Story

She will leave fingerprints all over your heart

11/29/2008

Moments I'm Grateful For

This morning I sit in the dark and reflect on a few of the moments I am so very grateful we have had over the last couple of days. Moments like:

Watching my husband dance with my brother's beautiful baby girl and seeing that the smile on his face was as big as the one on hers. I am so grateful.

The welcoming feeling my sister's home has you step inside of its walls. The smell of yummy candles , the familiar beauty of her style, the people who live inside of it. My second favorite place in this whole world.

Witnessing my son and his lighthearted spirit enjoy each moment of this holiday. What a burden has been lifted off of his young heart. His laughter fills mine to the top and his amazing smile is so genuine.

Kazink. Plain and simple. I love that game.

Walking the isles of Walmart with my 10 year old beauty when we both should have been asleep hours before. I love that girl.

Seeing my 1 year old niece Katelyn getting acquainted with our sweet Ashley. As she talked and interacted with our "baby" my heart was truly blessed. I long to see Ash doing the things she does. Talking, eating, walking, climbing up and down from her chair, calling out for her "Nan" over and over again. So painful, but yet still beautiful to my heart. How grateful I am to know Katelyn is healthy, is beautiful, and is perfect and how grateful I am to know that our Ashley is healthy enough to be home, is beautiful, and in His eyes is perfectly created the way He designed her.

Spending a short drive with my dad. I miss that man, and on more than one occasion lately I have allowed my mind to drift back to the days when I was his little girl and there was nothing I though he could not fix. He was superman and my problems would disappear with one spoken word to him. Life was simple as a child. At that time I had no idea how short those years would be.

Watching my mom take care of Ashley Kate. She loves her so much and next to me probably knows how to care for her better than anyone else in this world. She gave up so much of her life and her time for us over the last three years and now that she no longer lives with us I find myself really missing her. I am so grateful the smile she knows how to put on Ashely's face. I am also grateful for the smile Ash puts on hers.

Time with my sisters. My two most precious friends. God blessed us with each other many years ago and only He knew the bonds of friendship that would develop with these amazing ladies. I love them so very much. Just being around them blesses my heart.

Conversations with my son. Oh, how I missed him over the last week. I could sit and listen to him visit with me forever and never grow tired. This time with him, these 13 years God has given us, has been the best of my entire life. As I listen to him talk my mind drifts back to that toddler I sat with in the play room. Firetrucks and blocks spread all around and his tiny voice telling me, "Pretend this or that mommy, k? Just pretend with me." My heart is so grateful for this child who was born with a baseball cap on his head and couldn't go to the sandbox without it.

My two oldest nephews. Their grown now and living lives of their own. I don't see them often, but when I do they hug me tight just like their dad and it feels so good. These two boys who spent every summer vacation in Texas with Dave and I are now young men and I look at them and wonder how they grew up so quickly. Where did the time go? My heart was grateful to have them with us this holiday. I love you very much Jeff and Jerid.

Snuggling with my beautiful Allison Brooke while sitting on the couch and drinking in the smell of freshly shampooed hair. Allowing her to still be a little girl, like the one I sometimes wish I still were, even though she is grown enough to care about how her hair looks, that she has perfume on, and that her outfits make her look cute. In my eyes she'll always be that little girl in sponge rollers and footy pajamas the night before Thanksgiving.

The twinkle in Ashley Kate's eyes. The smile on her face. The joy in her expression. The laughter that tumbles out of her heart. What a gift Dave and I have been given. Having the opportunity to share her with our family is something we do not take for granted. This holiday has been complete because she is "home" with family and not being cared for by a hospital staff. Our hearts are full. Gratitude spills out of our hearts as much as joy spills from hers. God is good.

My brother in laws. They are the best. Put them in a room with my husband and hold on because its going to be fun. What great men the Lord has blessed us with. Godly, hardworking, compassionate, selfless men who have made mine and my sister's lives complete. I am thankful for them. Our family is surely blessed.

Dave. My heart is grateful. Marriage doesn't get any better than this. He is my best friend and I am so thankful we stuck it out in those early years when life is hard, money is more than tight, and exams are looming. We've grown up together and I believe with all my heart that its because of that growing up with each other that we are so very close. We are committed. To our Father, our family, our patients, our children, and each other. Even when its more than hard its knowing that we made a commitment to live this life together that keeps us going. I'm so thankful our friendship has survived the separations over the last 3 years as Ash has struggled to survive.

2 more days. Thank you God for giving us this long weekend and 2 more days to celebrate this holiday with our family. We have a "very merry unbirthday party" to decorate for this morning and attend this afternoon. I spent hours painting the "china" for it early this morning and days planning it for my niece. I can't wait to surprise her with all of it. The boys have the concert tomorrow afternoon and to say they are excited is an understatement. They have been preparing for it for the last 2 days. We have more games to play, more yummy meals to share, more memories to make, more laughter to spill out. My camera is still warm from all the moments I am capturing and my heart is still warm from the gratitude that is brewing inside of it. I pray your holiday has been precious to your hearts as you've spent time with family. What a gift to us how God designed families. I couldn't imagine life without ours and for them I am truly grateful. Happy Thanksgiving to each of you who have invested in our lives with your time and your prayers. I am thankful to know how much you love our Ashley and thankful to "know" you. Have a blessed day. Trish

11/26/2008

Happy Thanksgiving 2008



Ash and I are busy readying all of the bags, boxes of supplies, and "stuff" for our trip. We will working all day and hope to have the RV packed and ready when Dave arrives this evening a little after 6. We should be traveling well into the night, but if things don't go as planned or if Ash begins to struggle then we will pull over and get through the night then begin again early in the morning. I just wanted to take a moment and wish you guys a very Happy Thanksgiving. Have a great day and I look forward to posting tomorrow evening from the great state of Oklahoma. Talk to you soon. Trish

11/25/2008

Introducing Ashley Kate's New...


POOP JOURNAL!

I just LOVE it! When I saw it I couldn't resist. I mean if you've gotta keep a journal that's all about poop it might as well look like it would belong to Ash don't you agree?

Its not often that I am able to resist when it does come to Ash. Dave and I have struggled through many a difficult day watching our little one fight to stay with us and on the good days we just kind of give in to whatever make her eyes sparkle. I know, I know, I know we MAY live to regret our parenting(or lack of parenting) this child, but for now we have a really hard time figuring out how to enforce the same rules we did for her big brother and big sister. But... today I did it. For the first time I did not give in and the result was more than entertaining. I tried not to laugh, but witnessing this child throw a tantrum for the first time was ...well...it was... NORMAL and I loved it.

So the story goes...we were waiting in the store for her new flash cards to be laminated and as she sat in her stroller her eyes found it. The store was very, very clever with its display. Not displayed at my eye level, but rather under the counter and at Ash's eye level it hung. The item she thought she had to have. As the child stretched as far as her little arms could reach I thought to myself, "Oh, my goodness. She recognized what that was." I was so tickled I handed it to her to "look" at while we waited. She was so happy. Her little eyes were sparkling and I know her little mouth must have been smiling underneath that mask. All was good in our world until it was time to leave. I finished paying for our new flashcards and attempted to take the item from her hands. I say attempted because she had a grip on that thing and it took me 3 or 4 attempts to pull it from her grasp. All the while the tears were forming in her eyes and her little head was furiously shaking back and forth in the "no, no, no" direction. For a moment I contemplated purchasing it, but then realized that it was completely unnecessary and that she already had 6 volumes at home that we hadn't mastered so we really didn't need another one yet(It was like volume 10 or 11 of Signing Time). Besides not needing another volume just yet it was $22.00! No way I'm letting go of $22.00 just weeks before Christmas when my list is yet to be finished. So I stuck to my guns and PRIED the DVD out of her little hands. She was broken. She cried and screamed and the tears were flowing. Real live tears falling off of her cheeks. I can't believe it. I was so embarrassed and yet proud at the same time. Here was our 3 year old throwing a fit in public. I couldn't believe it. I realized its not sane to even admit this but I almost enjoyed the whole experience because it was so normal. I know, please pray for me.

As I buckled her into her car seat and loaded up her stroller my heart was so grateful. What an experience. I was blessed to see recognition from her, blessed to have her back in our home town and at a local business, blessed to see her behaving like a 3 year old behaves, blessed to be her mom. She is home. She is three. She is stubborn. I love it!

Anyway, I'm not going to go as far as saying that this particular item won't show up in her stocking on Christmas morning. You know I can't resist this baby's eyes when they sparkle and shine. I mean, come on. You'd probably buy it for her too.

Oh well, its bedtime. Hope you all had a wonderful day and if you're ever in the market for just the "right" poop journal just give me a call. I let you in on where I found ours. Goodnight and God bless. Trish

Sparkling


I'm not sure which is brighter. The sparkle in her eyes or the sparkle from the tree lights?
What do you think?

Making Just one Change

After getting word from our transplant center yesterday evening they only want us to make one change for now. We have added another medication to help Ash stabilize while her stool output is climbing. Overall her lab work looked pretty good which was very reassuring to me. That meant that I am currently keeping up with her fluid losses well. I replace IV fluids every 8 hours and was worried that perhaps she was losing too much for us to keep up on. Her lab work showed that we are staying ahead of the game and she is well hydrated although she continuous to lose large amounts through her ostomy.

We will not be scoping her tomorrow. We will stay with the original game plan and only scope her if she climbs to 100-150per kilo. Currently she is in the 70s. I know it sounds like a long ways off, but when dealing with a sickly bowel the numbers can change quickly. This is why I wanted to make sure they are ok with us traveling this week. At this time we will still make the trip. If things go south today or tomorrow we will not.

Her fever did break yesterday afternoon and she was a new kid once it did. She eventually got dressed(I mean I dressed her complete with an enormous raspberry colored bow. In case you didn't know big hair bows always make you feel better) and she was happy to leave the house to run an errand or two. We had to drop off her badly damaged eye glasses( which is why you haven't seen them since our return home) and run to the bank. She loves to be in the car. I think the change in scenery did her good because she was smiley and happy the whole time we were gone. She was doing so well I braved a couple of small stores and she wore her mask the whole time. I am so proud of how grown up she is and how much she understands that when the mask goes on it has to stay on. She played in her chair while I juggled three back packs, tubing, and diaper bag. On top of that I had to push not only her chair through the store but also pull a shopping cart along with us. We were not very coordinated and I had to apologize a time or two for being such a pain to other shoppers. UGH! I had forgotten how much work it is to leave the house when attached to all of that. When were home all of her pumps are attached to an IV pole and the tubing is nice and neat.

This morning she is fever free which gives me great hope that perhaps all of that fever was related to the TPA and working on her line the other night at the hospital. A friend called and reminded me that it is not uncommon for that to happen. Perhaps all of the cultures will come back negative and we will have avoided an additional struggle.

Today I'm hoping Dave can sit with her during the lunch hours so that I might run out again this afternoon for a couple of items. If not then I will go tonight while they are sleeping. This is usually the time I have to grocery shop(after 11pm or 12 am) and I have gotten pretty good at dodging the pallets and stockers.

So here's hoping for no news from the labs today. If they don't call then all is well. If the phone rings and they pop up on the ID then I'll know we aren't traveling and Dave, Ash and I will make a go of another Thanksgiving holiday. At least were not in Nebraska! I here its pretty cold there.

Hope your day is blessed. I'm off to give meds and wrap a couple of gifts. Pretty packages under the tree sure do make me smile. It just looks complete.

11/24/2008

Waiting for Direction

Ashley Kate woke with a fever. It hasn't gone down. It has lingered over the past 3 hours and she is weak. Her stool output increased again yesterday. Since increasing her feedings on Thursday she has gone from 49cc/kilo in 24 hours up to 73cc/kilo per hour. This morning she has already dumped 300ccs into her ostomy and we don't start replacements until 2pm. Thats 4 hours from now and I am terrified to see what the number will be for this first 8 hour period of today.

In light of all that is going on with her I have placed a call to transplant in Nebraska, to her GI doctor in Louisiana, and to our local doctor here in Longview. Everyone is waiting for direction. If they ask for it then everyone is lined up and ready to jump. Our GI team could scope her by Wednesday morning. Our pediatrician will send orders for a line culture, and stool cultures. I'm just waiting to discuss what they would like for us all to do. We have already drawn and dropped off a full panel of labs and I'm sure those results will help us to make the best decisions possible. We are still waiting to see a copy of those.

My hope and my prayer is that this is all nothing. That the increase in stool output is due to a lack of tolerating her feedings and will improve in time along with everything else. Since we are at the beginning of a holiday week I wanted to be pre-emptive and get a jump on things since all offices will be closed and we are planning to travel. Dave and I would love to make the trip as far as Oklahoma to be with my family and our children for Thanksgiving, but its all dependant on Ashley Kate's health. If everyone is comfortable with waiting and watching then we will still travel, but if the scopes are performed then the results could change everything.

Ashley is sleeping again and sometimes I think that's the best thing she can do when she is struggling to feel well. If she comes to mind today would you please pray for her. Pray that she regains strength, fights off infection, and is not in ongoing rejection. This Mommy's heart is nervous and will be sitting by the phone just willing it to ring with results and direction.

Perhaps its nothing. I can hope. Trish

11/23/2008

Stolen



There are moments in the day when I sit back and look at my sweet Ashley and I feel as though she has been robbed. The strength that she had gained this year...stolen. The skills she worked so hard to acquire...stolen. The trust she had just begun to place in strangers...stolen. Those things aren't here anymore. They are no longer hers. She can't stand anymore. She's still to weak. She barely eats. Just not able to tolerate it. She hardly moves. No longer has the energy to scoot across our floors. The desire to play. Its gone. Her toys sit in front of her and she has no interest. She still feels too yucky.

And then...

I remember what the Bible tells me. It says that the thief has come to steal, kill, and destroy.

And then...

I remember what that thief thought he was going to do in the life of our child. I remember her beginning and how from the very moment she was formed in the womb he began his assault. I imagine how pleased he was as he dealt blow after blow against the tiniest of God's creation.

And then...

I remember who was victorious. I smile inside and it seeps to my outside. I feel it spread across my face. That stinking thief did not steal her joy. Her life. Her spirit. That stinking thief did not kill our baby. That stinking thief did not destroy the purpose her Creator had in mind for her.

That stinking thief still attacks and still tries to destroy her. Still tries to destroy us. Still tries. Still tries to steal from her all she has been given. Her life. Still tries to bring us down. Still tries to kill our joy, our peace, our happiness, our child.

Well, guess what? That thief will not take from us what God has given. Only God Himself has the power to remove her from us. There is no power that the thief holds that God does not trump. There is no plan of destruction that God almighty can not turn around and use for His good.

There are moments in our days where the sadness of all she has lost seems to choke me. There are times when I still announce to no one in particular that I don't get it. I don't understand. There are still tears that form in the corners of my eyes as I watch her struggle to do what came so easily to her just a mere 2 months ago. Then I look into those amazing eyes and I see her. The real her. The one that shines from deep within and I know without a doubt that she will come back. She will gain all that has been lost this past month and even more. In time, as she gains more and more strength and more and more energy she will stand up again. She will scoot again. She will eat again. She will play again. Then I imagine what will come next. Her scooting will someday lead to crawling. Her standing will someday lead to walking. Someday she will not only swallow food, but begin to bite it and chew it. Her signing will lead to speaking. I just know that it will. Someday.

Ash is weak. There is no pretending that she is not. It takes her half the day to gain enough strength to sit up and flip the pages of her books. She has just begun to swallow food again, but her 500 calorie a day diet has dwindled to only 30 calories by mouth. She is signing more and more which is very exciting. Her communication skills are expanding. Not with her voice, but with her hands. Dave and I are doing our best to keep up with all she knows. Still she stumps us more times than not and we are left scrambling as we try to figure out what she is telling us. Her stool outputs remain too high to plan any type of increase in her feedings. Tonight we find ourselves praying for very little poop over the next 8 hours, again. There is no way to deny that she was sick. It took its toll on her little body and the healing is proving to be much slower than we had hoped. I wish she had bounced back in record time, but she has not. We are just thankful that we are working on bouncing back from her crib here in Texas and not the crib in Nebraska.

Many things have been "stolen" from our Ashley. I believe that they have, but more important than the things that were taken from her are the things that she has been given. God did not allow those things to be taken without replacing them. Beautiful blessings have resulted from her losses. Life lessons and growth that a price can never be placed on have come through the losses in her life. That stinking thief may continue to try to steal from our baby, to kill our child and destroy this family, but our salvation rests in His power. He will not allow one thing to be taken that He does not have a plan of restoration already in place.

Shortest Stay Ever

We are back home where we belong after the shortest hospital visit in Ashley's life. We are so grateful that they were able to save the line and she was able to come home. We checked in at 11:04 and were leaving the parking lot at 1:04. The paperwork and finding someone who knew how to do what she needed actually took longer than the procedure itself.

We have no idea why the line clotted off this evening, but for now its working again and we finally have fluids and TPN running. Its 3 and 1/2 hours late, but its running and thats the important thing.

We are really hoping for her output to turn back around and start decreasing any day. The last 48 hours she had stayed at the same level and it looks as though by 6am she will be about the same. Hopefully its going to taper down soon. If it doesn't, then we really don't stand a chance of getting her off the TPN and the line pulled by Christmas. She has three more advances to make and adjust too before any of that can happen.

Thanks for praying. We really appreciate the way you love our pickle. Good night. She's already asleep. Took less than 5 minutes. Hopefully it won't even take us that long.

11/22/2008

To the hospital we go...

...Yeah us. Here we go, but hopefully for just a few hours.

At 5:30 we took down her IV replacement fluids. Flushed her pic line. Checked for blood return. Flushed again. All was well.

At 10:00 we went to hang her TPN and IV fluids and it is locked down tight. Now flow in or out.

Not having access as this point in her recovery is not acceptable. She is still on 30cc of TPN for 10 hours each night. She is also requiring 90ccs of half normal for ostomy output replacement. We have to have access tonight or she'll be dehydrated by the morning hours.

We're crossing our fingers that we will be able to get the line open and flowing in just a few hours. If not then we will be admitted and have an IV replaced and then be on our way to Shreveport tomorrow for surgery.

Please join us in praying for the "clot buster" to work.

Hopefully we'll talk to you soon from our little house instead of the hospital. Goodnight guys. Trish

Adams Family Holiday photos...


...take 1, I mean 2, no 3, Oh, just forget it! We tried and that's what really counts. At least I have a few to look back on in 20 years and laugh about. This is the best we got out of hundreds so enjoy! I'm not even sure we have one that we could try and pass off as a Christmas card.

My first mistake was holding Ashley Kate. This girl is too ornery. She wouldn't quit pushing my nose. She wanted me to say, "BEEEEEEP", but all I could do was laugh because had I asked her to do this to show anyone that she knew where my nose was do you think she would have obliged? Are you kidding! I think next time I'll have Dave hold her. I just hope she doesn't try and pick his. You never know what those two will come up with when their together.



This one is actually my favorite.
A. because everyone is acting silly and that pretty much sums us up.
B. because you can't see my whole face. In light of the fact that I have grown a couple of extra chins over the last 3 years I for one think this is a good thing. You won't be seeing any of the shots where I was actually trying to look at the camera instead of wrestling Ash. Lets just leave it at that.




Now on to my favorites. The ones of the children. How can you not love this face? I mean she's gorgeous! I look into those twinkling eyes and get lost.




Too sweet. Too innocent. Too...ok, lets be real about this. I'm not sure who Ash was trying to fool. We all know this child is not always as sweet as she's pretending to be in this photograph. Did you look close enough at the first one. She is pressing her finger onto my nose continually not allowing us to take a "real" family holiday photo. She is SO ornery, but I SO love her!



We were freezing. In Texas thats saying something. If you live in Nebraska please don't laugh at us, but the wind WAS blowing and it WAS only 58 degrees. When standing down at the pond that makes for a cold photo session. Our sweet baby HAD to have all of her photographs taken in her coat(that I only bought in case we spent our winter in Nebraska. I couldn't believe we actually go to use it here at home in Texas). The older kids were begging for their coats too(I'm talking all "3" of them with Dave complaining about being cold more than the others). Nope, only the baby gets to be warm. Now be quiet and smile!



There isn't a photo of Allison Brooke that I don't love. I think she's beautiful. I could look at her all day and never grow tired of her face. What a wonderful girl she has matured into. We so enjoy this child.




One of my ABSOLUTE favorites. Blake was talking to Ashley Kate during one of our breaks as we loaded new cards into the camera. I love the look on her face as she stares up at him.




Again, I think the girls are just gorgeous! I'll keep this one around for quite a while.





I wish Ash had looked up in this one, but then again its pretty sweet the way it is. She was signing a whole string of things to the kids during these photos and they looked on trying to figure out what she was saying. I'm not sure we really need to know what she had on her mind as we sat her in the cold for over an hour, but the picture is too sweet.




Finally, I'll end on this note. I really love my kids, and I'm so thankful they cooperated as well as they did. Family photographs are not really Blake's thing these days, but he was really great and I was so thankful he put up with me and my cameras. We don't need to talk about the last hour of the session where I took the best photographs of the day with the children playing in the leaves and Ashley Kate giggling all the while. Nope. Let's not talk about it because once I returned home I realized someone had filled the photo card I placed in that camera and removed it and put it in their pocket without me knowing it I almost cried and its too early to cry today.

Hope you enjoyed our attempt at a family holiday photo. Who knows maybe I'll come up with some kind of a card with all of these. I'll think about it.

Enjoy your day. Trish

11/21/2008

Too much Too Soon

I've been taking things slowly with Ash. According to our schedule she should have earned an increase in her feedings for 6 of the past 9 days. It just seemed too soon to me, so I made the decision to go slow and steady. No matter what her numbers said I thought I should evaluate how I thought she looked and if I thought she would tolerate the increase well enough. I guess I should have waited a few more days.

According to the schedule I was discharged with each 24 hours period that Ashley Kate has under 840ccs of stool out of her ostomy I should increase her tube feeds by 3-5ccs. Along with this increase as she hits 40cc an hour, 50cc an hour, 60cc an hour and finally 70cc an hour her TPN should be weaned down lower and lower. Now the ultimate goal it to get her back to a rate of 70 cc of tube feedings and no need for TPN. The goal is to remove the pic line and reduce her risk of infection. Knowing all of this and knowing she had been doing so well I made an increase yesterday for the 3rd time since arriving home. 5occ an hour of tube feedings and TPN for only 10 hours a night. I guess it was just too much too soon. Yesterday she proved to not be ready for this increase and has stooled out more in the past 24 hours(that period runs frm 6am to 6am) then she has in the last two weeks. I'm holding my breath as I empty her bag each and every hour. Hoping for little to no output to be found in there. So far I've almost turned blue in the face for nothing. Each and every time I have checked there has been stool and it has had to be added to the growing number. I am so disappointed. I think we will just sit and hang out around 50 for quite some time.

As we muddle our way through this recovery I try to remind myself of the length of time it actually took for her to heal a year ago. Full feedings did not happen over night and every high stool output day did not mean she had slipped back into rejection. It was a long, up and down recovery and it took months and months. I have to remember this. I have to remember to breathe(a passed out mommy isn't going to be able to take care of a weak Ashley). I get so nervous with every little sound, each cough, each diaper change or bag empty. I find myself so wound up wondering if she's ok and asking her a hundred times a day, "Are you ok?" Its not like she can even answer me.

For the last 3 mornings we have gone to measure her output at the 6am hour and found her laying in her bed with her ostomy bag removed. I guess she knows that its time for mom or dad to come into the nursery and so she tries to help us out a little. I wish she realized that removing that bag wasn't helping. In fact it was making that hour much more difficult on us as we prepare supplies, wash a screaming baby, and change her sheets.

I so desperately want Ash to feel good. I want her to be her silly self. The self that she was before she became sick early last month. Its going to take a while, but I still long for her to have good day after good day after good day. She's home and that's the biggest step toward the right direction, I just fear that any day things will go south and there's not much room to go south when you live in Texas. I mean anymore south and were going to start drowning. I wish I could just breathe. Slow and relaxing breaths for slow and relaxing days. Just as her feedings have yet to reach that normal range so has my heart rate and my breathing.

Its a long recovery. She's not quite there. Lots and lots of healing left to do. Its proving to be slow. Its not an easy process as she is pushed to her limits daily. It kind of seems as though I'm being pushed to mine right along with her. I've found myself in the floor in her nursery right next to her on many a days lately with not much left to give.

Your prayers for Ash's recovery would be greatly appreciated. I'm praying for jut a little stool today instead of the "lots" I got yesterday. Yes, I pray over poop. I know there are bigger problems in this world, but in ours it still all comes down to poop. Go figure!

11/20/2008

Can you tell?


I love them, I love them I love them! and I just can't get enough of the two of them!


I don't know if you can tell or not, but Ash loves her daddy and he loves her. On top of that I love them both so much it almost hurts.

Its been such a busy day. I'm really tired and still haven't had the opportunity to catch up on much sleep, but the weekend is coming and we aren't playing ball so my plan is to rest. A lot. Ash is super tired and a little fussy but my hope is that it stems from the busy day she had and not anything other than that. Were going to bed and hoping for a few hours sleep before all those pumps alarm and get us up to run another round of fluids and such. Good night my friends. I hope your days have been blessed and full of wonderful things lately. I know mine sure have. Home is such a wonderful place to be.

Infusion Complete!

We did it! After a very long week of phone calls and frustrations we finally scheduled her albumin infusion and it is now complete. Afterward we met Dave for a quick lunch and are now back home ready to take a short nap before picking up Blake and Al.

Only a half day of school remains until the Thanksgiving holiday officially begins. I remember so well my desire to be in that carpool line this time last year. It didn't happen, but this year I will be the one in that line retrieving two of my three most treasured people in the world. God is really good!

Our holiday plans have been altered because of Ash's fragile state(Colorado is a little too far to travel with her), but still we are looking forward to an amazing time of game playing and fellowship for 4 full days. Dave and I are SO excited. Next Sunday I will be treating him and my two brother in laws to the Trans Siberian Orchestra Holiday Concert in early celebration of Dave's 35th birthday(its not until next month). The guys are really looking forward to it! I'll do anything not to have to endure that noisy, smoke filled, laser light, show ever again. Its just not my thing, but oh how Dave loves that group. So I think an extra two concert tickets is a bargain that affords me more time with my sisters. We both win! The kids will be traveling Saturday so that they have more time to hang out with their cousins and then Dave and will be RVing it(so Ash has a comfortable place to rest away from the crowds of the holidays when she needs it) to my sister's homes(you know, a couple of my favorite places in the world to be) on Wednesday evening arriving in the early morning hours of Thursday. Then the fun will begin. I can't wait to whip up on everyone in a round or two or thirty of Sequence, and then when I'm done with that I'm going to Kazink them all! If you haven't plaid Sequence, Kazink, or ever rolled yourself a good hand at Pigs then you don't know what you've been missing. Its not a holiday until you've played these games.

Our weekend should be quiet( probably too quiet without Blake and Allie), but enjoyable. Dave and I desperately need time to rest and reconnect. Its been a busy week since I arrived home. Can you believe its been a whole week? We plan on doing a little Christmas shopping(we found a kitchen set with Ashley Kate's name on it) and gift wrapping and then a lot of sleeping. I'm really looking forward to it. If all goes right in our world then we will be having family photographs taken tomorrow afternoon at the pond and then I will share them with all of you. Hopefully this can happen. Can you believe we've not sent cards out since Ash's birth? I know, its not even right to allow that to happen. Like I said, hopefully all will fall into place and this will be the year.

Blake's got ball practice tonight and Al has tae kwon do so I guess I better figure out whats for dinner so they won't have to starve. Then it will be time to pick them up and be on the run until late this evening. Hope your day was blessed and that your homes are gearing up for a wonderful holiday season. You are loved from a little yellow house in Texas. Take care my friends. Trish

11/19/2008

At our house...

... You'll find a family of 5. Inside our walls you will see a fully decorated Christmas tree. Its complete with all 16 of our family ornaments that have been collected one by one each year we have been together. Each ornament has our names, our pets names, and the year. They are all handmade and hand painted. Each chosen to represent that year and all it held for our family. Of all the ornaments on our tree these family ornaments are the most special to me. I love to look back and see how the Father took Dave and I from just the two of us to the three of us in 1995, and then the four of us in 1998, and then the five of us in 2005. All five of us. Our family is complete. I love that. I love that we have been given a Blake, an Allison, and an Ashley Kate. Oh, how grateful I am to be us.

At our house tonight we finally finished a battle of Risk. It only took 3 days to play and only took Blake 3 days to dominate the entire globe and knock us off one by one. I'm not kidding you when I say he plays to win in EVERYTHING he does. Its exhausting to play games like Risk or Monopoly with this child. Although he does make me laugh until my sides ache with his strategies and plans for victory. This child is serious when it comes to winning.

At our house tonight Allie and I began our traditional holiday puzzle. The dining room table is now occupied with a 1000 little pieces that we will systematically fit together one by one until our picture is complete. I love puzzles. Not because I love puzzles, but because I love the time it gives me with my family. As the puzzle is being fit together you will find one or two or maybe three and sometimes even all four of us there together hunched around the pieces working and fellowshiping. I really love what it does. Puzzles bring us together. Maybe only for a moment or two in passing from room to room, but sometimes for hours. I encourage you to get one and give it a try. I've had some of my favorite conversations with the kids while working away during the holidays.

At our house tonight I "let" Blake whip me in a game of ping pong. I was just too easy on him for fear of making him cry. I wouldn't want to do that to my son. He needs to think he is the ping pong champ in this house. You know, I'm building his self esteem.

At our house tonight you would have found our tiny pickle snuggled in the crook of Blake's arm as they read "5 silly monkeys" together. They were both so very content to be together.

At our house tonight Allie scooped up our baby and carried her to their room to tuck her into her crib. You know that room she waited and waited and waited for her baby sister whom she waited and waited and waited for to get to sleep in. She sleeps better with Ashley Kate in her place. Its so precious to tip toe into our girls room and see them both fast asleep. Its so wonderful to here Dave ask as he walks in the door, "Where's the girls" and for me to answer him, "In their room." I LOVE that! Our girls. Their room. God is so good!

At our house tonight you can hear the sounds of Christmas carols playing and smell warm baked pumpkin seeds that have just come out of the oven.

At our house tonight you will find a fluffy white puppy who is now a year old that made her appearance as the surprise of a life time a year ago for the hurting heart of our oldest daughter. I looked over at that silly dog tonight as she was all snuggled up on the freshly folded laundry and was thankful for her.

At our house tonight I am happy and grateful. I am content to be me. I am soaking up all the moments I possibly can so that I can store them in my memory never to be forgotten and to be readily available if we ever have to leave for a while again.

At our house tonight as tired as I am, I am hesitant to lay my head down for not wanting this evening to end. An evening where we chose to let all those places we were supposed to be go on without us and just stay home together. It was such a healing time for my heart. I'm so glad we chose to stay in. We all needed it.

And now it is time, at our house tonight, to go snuggle up close to my best friend in this world and let my heart rest while I am safely tucked in his arms. God surely blessed me the day we met. I am so grateful. Good night my friends. Trish

Finally

I'm on the right path. Thanks to some very honest people who broke it down. Insurance. Money. Plain and simple. If I had to guess(which I know I shouldn't) that would be the real reason we haven't been able to get it done. A home health company and their employee who I was working with this morning was MORE than helpful and she said, "I'm just going to be honest with you and let you know its about the insurance. Yours won't cover it and its just too expensive to have to pay for yourself. Your best option is to go through a hospital so that it can be billed through them to your insurance. We would love to help you if you ever need anything else." I just wanted to hug that girl through the phone FOR her honesty and compassion. ( If you need a referral just let me know and I'll privately send you the company name)

So I have been on the phone for over two hours this morning and think we are finally on the right path. Our transplant center is faxing orders to our local doctor who is faxing orders to the hospital who is currently working on financial approval through our insurance who thinks that if they can get the approval then she may receive her infusion by Friday afternoon. Unbelievable! She has needed it since Monday and won't get it until Friday(hopefully) because of paperwork and money.

I asked if Dave and I purchased it ourselves if home health could run it for us and they laughed. "You MIGHT be able to afford it one time, but its just not really affordable." Hmmm. I called our pharmacy and they laughed too. "We don't even stock it because of the high cost. It takes us two days to get it in and thats only with insurance approval." Hmmm. I'm really frustrated.

As a parent of a chronically ill child the whole "business" side of health care, the side that it really all boils down too, can make you pull your hair out. Its so difficult to be told that your baby needs care, but can't receive it because of money. It is such a feeling of helplessness.

So this morning I am relieved to be headed down the right path(finally) and to know that things are in the works versus me running in circles and receiving phone calls on three different phones, but still disappointed to realize that its "money that makes this world go round" and if we had unlimited amounts of it she would indeed receive much better care. That part makes me sick to my stomach.

Ash is still sleeping this morning. She had a rough night and mornings tend to be her hardest part of the day. Usually by early afternoon she is silly and playful and her "normal" self. I think we are making some progress toward weaning the TPN and increasing her feedings. I'll be making a change today so pray that she tolerates it well enough to keep going. Sometime during the night her pic line backed up and now has blood stuck to the inside walls of it. It is still drawing and infusing, but looks pretty nasty. I'm calling our surgeon this morning to make sure its safe to leave it or find out if it has to be pulled and replaced. I sure don't want to keep it if the blood will breed an infection inside or it, but don't want to lose it either because I think putting her through surgery this week would be too hard on her. Oh well, I'm sure either way its going to work out.

Thanks guys for letting me vent my hurt, confusion, disappointment and all that last night. Like I said, some days it gets to be too much and I think I'm going to go crazy. Your prayers for the baby gherkin are so appreciated. Have a great day. I'm off to fold laundry(at home!:) Yeah me!) Trish

11/18/2008

Can't Sleep


So I'm hanging out with this little pickle instead. She's up and I'm up so why not get out of bed and look through the pics I snapped today. Something about this one caught my eye. I just love this girl!

I'd watch a little TV or put in a movie except that I convinced Dave to help me disassemble and move the entire system yesterday so that I would have more room in the family room for our Christmas tree. The room looks great and the look on the kids faces when they came home from school and I announced we wouldn't be turning the TV on until after the first of the year was PRICELESS. Guess I didn't think about me and Ash and the all nighters we tend to pull together. Oh, well...we've got pictures to look at (around 15,000 or so) and loads of laundry to wash. Might as well make good use of these late night hours.

Sure wish I could sleep. My eyes are so tired as is my body, but my mind won't allow us to rest. I know tomorrow will hold what it holds and that laying awake all night wondering what it will be won't change a thing. Yeah, I know that, but that knowledge isn't doing me any good. So, I'll just go back to my pictures and pick out a few more favorites. Just wanted you to see how adorable she was this afternoon. Good night. Again. Trish

Some days...

...I just get tired. Tired of the hassle. The phone calls. The fight to get done what has to be done. There are days when I honestly want to scream and say, "Don't you get it! She's sick and we need your help!"

I don't allow these days to get to me very often, but in all honesty I am so very tired.

Ash needs albumin. I mean really needs albumin. Albumin is a blood product. That means a nurse has to be present for the infusion. Just in case something happens. She has had it at least a hundred times over the last 3 years. Thankfully there has never been a bad reaction to the infusion, but just in case they want a nurse monitoring. We take her vitals every 15 or 30 minutes. I can't remember exactly cause I"m really tired.

So Ash needs it, but we can't figure out how to get it for her. I mean, we should be able to arrange it with our home health company, but it didn't go so well for us today. I really don't get it, and I'm trying not to be too upset about it, but after several phone calls(2 of which told me they would be happy to come out and infuse it) they said, "Were really sorry Mrs. Adams, but we just don't have time. We can't help you because were under staffed and we have three new patients to admit. So sorry." O.k. I was stunned. I really didn't know what to say. I had just been told not an hour before that they would be happy to help us as long as it wasn't a weekly infusion. What happened? I get that you are busy. I really do understand that. BUT... its not like we are a new patient. We have been with this company since Ashley Kate was discharged from the NICU. We ARE their patient. How can they say, "too bad, were too busy"? How does that work and what am I supposed to do? Now we have been left to scramble, and not to mention been left with a really bad taste in our mouths for this company too.

I've spent time on the phone with everyone and no one knows how to help us get an albumin infusion. The only thing our pediatrician's office and I could come up with was an admission. Honestly, the last thing we need to do is be admitted for a ONE hour infusion of albumin. Its the craziest thing I have ever heard of. Not to mention that it will be the most expensive ONE hour infusion in the history of albumin infusions. I am trying to find another home health company that can take Ash on by tomorrow. So far I haven't found one. If I can't find one then we will be forced to ask for an admit to our local hospital and get the infusion done. Unbelievable. It really is.

Our transplant coordinator was having a hard time believing that we don't have an infusion center here in town that can infuse a pediatric patient with albumin. To be honest, I'm having a hard time with that one too. This is the craziest thing ever. Its JUST albumin. I want to scream, "just give it to me and let me infuse it myself." Its not a difficult thing. I'll be the one hooking it up to her line and taking her vitals anyway. All they will be doing is sitting with us for the hour and writing down the numbers I report to them.

I'm really sorry for the yucky tone of this post. Like I said "some days" are just hard. Today has been one of those. I'm still shaking and still in tears. Who knows whats going to happen tomorrow. Her level has never been this low and we really have to get it up a little higher(.9 is just not acceptable). If your a local reader and have any ideas who can give infusions to a three year pediatric patient here in Longview could you please leave me a message? Or call me. My number is in the book.

Just another bump in the road called transplant. Hope we get over it without any more complications. I'm gonna try and get some sleep. My nerves are shot after today's events. Goodnight guys. Trish

Such JOY!


She absolutely radiates with it. Her joy is undeniable. It is in her voice. Her giggle. Her eyes. On her face. Shown beautifully when she smiles. So precious as she celebrates with the clapping of her tiny hands. We love her so very much. Can you tell? Just look at the joy on his face!

Ashley Kate has done so much for us. As parents Dave and I have learned more from this little girl than we will ever be able to teach her. Life lessons that would have never come if she had not. Oh, how we love each moment we are given with this little life. This little spirit. She reaches inside of me and brings out the very best I have to offer.

I can't tell you how many times we have been "advised" to let her go(not by our physicians, but by well meaning on lookers). We have been "lovingly" told to just allow her to slip away. To let her go to Jesus and never look back. Just last week Dave had a "one sided" conversation where he was told we were holding her back from true healing and peace. I was once told that I wouldn't put a dog through what I put Ashley Kate through and that I needed to show mercy to her and allow her to die. Those words however they were meant cause such pain. Although I try to share her with you, if you haven't met our Ashley then you can't truly understand the light that is seen in her eyes. The joy He placed inside of her. The happiness that she has. When I see our Ashley like she is in this photo (taken just last night) I wonder how anyone could ask us to give up on her? I just can't. I'm so glad we haven't.

We truly believe He created her to do big things. Our tiny girl has a job to do and only the Father knows when it will end. Only He can take her from us. Tonight I watch her sleep so peacefully in her crib with her Christmas lights twinkling and casting sweet shadows on her cheeks and I rest in the knowledge that we are doing everything humanly possible to give her life. An abundant life. One that she will enjoy to the fullest extent she possibly can. We won't give up on her. We believe in her.

We have been blessed. Blessed to know her. To hold her. To rock her. To giggle with her. To love her. So blessed! Much more than we deserve.

11/16/2008

Just Watching

As Dave and I sat quietly together at the dinner table this evening he broke the silence and said, "I could sit here and watch them forever." I nodded my head and fought back the crocodile tears that had formed in the corner of my eyes. Allie had gotten up off the couch and as she walked past Ashley Kate used her little hands to point to her big sister and then her arms reached up as she "asked" to be picked up. Oh...my...goodness! Dave and I melted as we watched the two of them snuggle in the middle of the family room. There is nothing sweeter than to be in our home and see the children hanging out together. Just an hour earlier we had watched her big brother lay in the floor with her with his head propped up in his hands. He was facing her, down on her level, so that they could "talk". I can't express to you the way it feels inside to see the way they love her.

Such burdens are carried on their young hearts when Ash is sick. They handle themselves so well. So mature. You might not notice when you see them how heavy their hearts are, but I notice. I hear it in their voices. I know they hurt so much more than they express. They are scared for her and we can never promise them that she will be coming back to grow up along with them. Then the moment they hear word that she is coming home the heaviness begins to lift. The lighthearted silliness of their personalities begins to return and the joy in their eyes can be seen from across the room. All is well again when mom and Ashley Kate return. Their world is right and they worry no more.

We have enjoyed some precious days together lately. From Thursday's do nothing but hang out and play to the trip on Friday to watching our beloved Tarheels play and win the final tournament of this season Saturday and Sunday. We spent the evenings playing games, laughing lots, and cooking some of their favorite meals. This afternoon we traveled back home and have begun our holiday decorating. It will take a few days. Tomorrow while they are in school I will do most of it, and then in the evening we will decorate the large tree. They have finished their trees and my eyes sparkled as I tucked them in tonight and saw the lights of their Christmas tress twinkling in the bedrooms. The girls were quick to fall asleep to the sounds of a Disney Christmas as I finished scratching Allie's back and then kissing those puffy cheeks of our baby. Blake lay in his bed thinking about the games that were played this weekend and trying to get to sleep. I snuggled close to him and told him how very proud I was to be his mom as we lay staring at the lights on his tree.

The house smells so yummy tonight. Dave just finished baking a huge batch of pumpkin seeds so that he and the kids would have them to munch on this week. The lights of the candles on the mantle are glowing and the relaxing sounds of instrumental carols are playing. Such peace floods my soul as I sit here in this room. I love nothing more than to know my children are safely tucked into their beds. All snuggled in and warm as they dream.

Its been so hard the last 6 weeks. Never knowing what would happen to her tomorrow. I still don't know what tomorrow holds for our baby, but just being home reassures me that it may actually be alright. I keep reminding myself of the long path she has ahead of her to healing, but then remember how far she has come the last couple of weeks. She is getting stronger every day. The mornings tend to be hard on her. As she wakes and adjusts to the feeling inside of her gut and gets a handle on all of her meds. She spends much of the mornings struggling, but by afternoon she is happy and joyful. Her feeds have gotten to 45cc/hour(the goal being 70) and her TPN is down to 400cc being infused over just 2 hours. Our hope is to have her weaned off of the TPN and on full feedings by Christmas Eve so that our magical trip may take place. I'm sure we could still travel if our goals were not met, but Dave and I feel she would be in a much safer position if we did not have to access a line on the trip. Her IV replacements are about the same. Not much improvement in that area yet. Overall I think she is healing and doing as well as can be expected after all she's been through. We are very, very proud of her.

I have only given her one dose of the blood pressure med daily since the vomiting began and I think it is improving. The team told me our options were very limited and that they wanted me to keep trying this med and hoped her body would adjust to it. I agreed to only give her the one dose a day and told them we would see how she did over the weekend. The coordinator agreed and told me I knew her best so to use my better judgement. Her pressure seems to be controlled just as well with the one dose.

I really wish we could sit here forever and just watch. Observe our family as each member interacts with the other. It truly is the most beautiful thing. Have you ever sat still and just watched your children and appreciated being an observer in that moment? I am so grateful to be here with them all tonight. I have missed so much, and don't want to miss a moment more. Now that I am home I hope to have the opportunity to keep our littlest one here and sit back and watch the three of them together just a little bit longer.

Goodnight my friends. I hope you enjoyed your weekend and your families. Life is such a gift. Don't you agree? Trish

11/14/2008

Kisses

I looked up from cleaning the floors and caught a glimpse of Ash in the nursery. She sat in the middle of her rug patiently blowing kisses to me just waiting for me to see. It was the sweetest moment ever. She is the sweetest baby ever. I'll take those kisses a million times over anything the world could offer. She truly is the answer to our prayers. She not only receives our love, but she gives love back to us. My heart melts each time I see her tiny hand go up to her mouth as she holds it there, kisses it, and throws it to me. I love her so much.

She is a sight this morning! She finally gave up around 6 or 6:30 this morning and woke about 1:oo this afternoon. I haven't had the heart to bathe her yet because I know the tears will flow. She needs a little while to wake up yet. It was a very difficult night. Her hair is stiff and smelly. Her teeth need a good scrubbing. She is naked wearing nothing but her diaper, but she is happy and the vomiting has ceased. I cleaned the last bit up right before 6am. I chose not give the dose of enalapril this morning. No more vomiting.

Yesterday was the first day she received her scheduled two doses. I think it was enough to do her in. I gave the second dose with her 9:oo meds last night and by midnight she was retching and gagging. It lasted for 6 hours. I was very frightened. I left word with the transplant coordinator about what was going on. I shared with her that I ran extra IV fluids at a rate of 25 per hour through the night to counteract the fluid loss and that I was holding this mornings dose of medication until they gave me some recommendations. That phone call took place at 8 this morning and I am still waiting for a call back. Her blood pressure at 4am was 130/90. Clearly elevated and in need of something to bring it down. I shared that info as well. When she was inpatient they wrote orders for an emergency dose of atropine to be given if it rose to 130. Not sure what I'm supposed to do with that piece of information.

Although her appearance is quite rough she is happy and content listening to Christmas Carols and reading books in her nursery at the moment. I am making lists of supplies we will need for her over the weekend and attempting to do enough laundry to efficiently pack for us all. Blake has basketball practice this afternoon and I am waiting on some supplies to be delivered for Ash before we can load up and head over to McKinney. I'll be glad to see Dave. He tends to keep me calm on occasions such as last night and I sure could have used his reassurance. Tonight will be much better. We will all be together.

I truly hope it is has just been a reaction to a medication. Her little body tends to be quite sensitive to those silly blood pressure meds. Just a few more months and we hope to wean the prednisone, thus getting rid of high blood pressure and the need to medicate it. What a journey!

Well, lots to do. Showering, bathing the pickle, packing and some more cleaning. Then I'll load us up, pick up Blake and Al and we'll be off on a road trip. Yeah us!

Side Effects?

Guess what were doing? Yep, were vomiting. I mean not we, but she. Ash has not been sleeping. She is nauseated and began vomiting around midnight. Its 3:30 and were still up. Still vomiting. Whats going on?

Well, she hasn't had this issue in a long while. So whats a mom to think? I don't think its related to her bowel. Through this entire rejection episode she has not exhibited any signs of nausea or vomiting. So I google the only "new" thing that we have started. The only "change" we have recently made. Remember the discovery of the blood pressure patch disappearance? Remember the return of our happy baby once it did disappear? I think it was Tuesday that we began a new blood pressure medication. A medication she had never been on. Its supposed to be taxing on the kidneys. The whole issue that started this rejection thing. Remember all of this stuff?

When I googled enalapril the most common side effect is this: VOMITING.

What in the world am I supposed to do? Vomiting is a dangerous thing for Ash. She doesn't know what to do with it and so as she panics she tends to inhale and "poof" she aspirates and we are battling for her life all over again. I don't know what to do.

I will be calling the transplant coordinator as soon as the offices open. Lets see...thats only 5 hours from now. Don't worry, were not getting any sleep tonight any way so we might as well sit and watch the clock. We had to be up at 6 anyway to figure replacement fluids and then at 7 get the kids ready for school and then we are going to load up(with all 3 pumps and now a "yucky" feeling baby to drive them to the school and then maybe she'll be tired enough and empty enough to sleep for a moment or two and then I will join her.

Her blood pressures are high. Really high. Its a side effect she suffers from the prednisone. Just another reason I'm no fan of prednisone. So, to treat the rejection we added prednisone which causes extremely high blood pressure for Ash and to treat the high blood pressure we added enalapril and now we sit up with extreme nausea and vomiting. Its a nasty cycle.

Your prayers over this issue would be greatly appreciated. I really want to keep her home. The last thing we need is a case of aspirate pneumonia on top of everything else.

11/13/2008

All Tucked In

The children are all tucked in and I spent precious moments with each of them in their rooms tonight. Honestly, we spent precious moments together all day long. What a great first day home we have had.

I'm hurting. Not my heart, but my body! Blake and I played basketball all day long. He whipped me. I tried to pretend as though I was letting him, but he's almost as good if not better than I am. I love basketball. I played for 8 years, coached for 10, and am now raising players. Well, Allie is taking this year off, but has promised she is playing next year in junior high. My body aches, and aches, and aches as I sit here completely wiped out. Its a good kind of ache. The kind you feel deep in your muscles because your no longer young and as cool as you used to be. Maybe some of you know what I'm talking about. The funnest part of playing with them today was having the ability to coach them as we played. They listen. They get it. I love to see them put into action what they have just learned. We had the best time.

In between games I made Blake's favorite lunch(chicken tacos). That boy can eat a taco or two! Allie played and played with Ashley Kate on the floor in the family room and those two girls giggled until they made my sides hurt. It was a beautiful sound. So precious. Ashley Kate is a happy, happy little girl. She's home. This is where she wants to be. The kids are so happy to have her back. Tonight I caught Blake leaned over into the crib telling her goodnight and kissing her on the forehead. The same place I have kissed him every night his whole life. It blessed my heart to see this teenage boy loving on his baby sister. I am so glad to have her back here.

Allie road her bike to the park today and Blake and I jogged along. Once we were there we played some 2 on 1 and a game of "PIG". Mom one the round of "PIG", but Blake beat Allie and I 11 to 8. Dave's mom and grandmother came over to see the pickle this afternoon and played for a while. It was really nice to see her giggling and interacting with everyone. Grandma stuck around to sit with Ash while we went over to the park.

Dave is on the road to Dallas this evening. He will be at his old stomping grounds (Parker Chiropractic College) for the next couple of days on business, but we will join him tomorrow evening for Blake's last baseball tournament of the season. We are looking forward to having some quality time in the RV together as we play board games, bake Blake and Al's favorite cookies and hang out between the ballgames. Ash loves to travel in the RV and she is going to be smiling from ear to ear.

I thought it would take me a while to get back into the swing of things, but I guess its something you never really forget how to do. TPN, IV replacements, ins and outs, drawing labs, and meds, its all going really well. I'm tired because I feel as though my brain is in over drive making sure I don't forget to do something, but still its going well. She looks really good and we were able to decrease TPN and increase her feedings for the first time in days. My fingers are crossed that she'll do ok on the new amounts tonight.

Its been an incredibly busy day, but my heart has been so blessed. Blake killed Al and I in a game of Monopoly tonight and he went to bed a happy man. Allie and I just shook our heads and realized that we will probably never beat that kid. He is just so driven to win. Tomorrow we will pack, organize, and get back on the road. Sunday evening we will begin our holiday decorating. I can hardly wait.

I'm going in to check on the pickle, figure her replacements, and then lay myself down. Somehow I think me and my happy heart will have no trouble at all finding some sleep.

I'll visit with ya'll in the morning. Good night from our little yellow house in Texas where this mom and her kids(all 3 of them) will be fast asleep before you finish reading this post. God bless. Trish

She's Home


...and its STILL fall Ya'll!

I can't believe it. We finally walked into our home at 12am this morning. Such a long trip!

Blake and Allie had waited up for us to come home. As soon as we walked in the door Blake grabbed his blanket, got up from "his" spot, and told us goodnight. Allie on the other hand stayed up to help me settle Ashley Kate(she had her bed already turned down for her) and then it was just us older girls. We snuggled and talked for another hours or two before I tucked that beautiful young lady into her bed. I lingered longer than usual cause it was just too hard to get myself off of her bed. She was so sweet and so beautiful and so grown up. My goodness they sure can change in a matter of weeks!

As I sit in our family room this morning, with the amazing scent of a Yankee pumpkin candle filling the room, our tiny pickle sits in the floor in "her" spot and plays with a basket of toys. Bet you can't guess what she picked up first? Not a baby doll, not a book, not her blocks, not even Blue. It was a baseball! That cracks me up. Does this girl know what her priorities are or what?

Its amazing that were here. I still can't believe it. Home. It's my favorite place in the world. It has my favorite people in it. All of them.

Some days there are more important things to do. Like staying home with your mom and your baby sister? That's kind of what I decided anyway. So my three favorite kids in the world are sitting right here with me. Have I told you lately how much I love them? How incredible they are? How beautiful they are? If I haven't then I think I should. They are amazing! So beautiful! I love them so very much!

I could spend the day doing laundry, cleaning the house, and getting our things back in order. OR...
I could spend the day playing ping pong, a little game of one on one out back( as I teach my son a thing or two about the game of basketball), baking warm chocolate chip cookies, playing board games, and enjoying each and every minute of my life.

Yeah, I think I'll take myself up on that last one.

Thank you , Father. You amaze me. I am so humbled to be here, living this life, with the children you have loaned me. I love you and I am grateful. You see my heart and the feelings that hide inside, the ones that I have no words to express, You know them well. Your protection, Your traveling mercies in the late night hours, Your direction around anything that could have harmed us the past two days, I thank You. I am forever grateful.

11/12/2008

Half Way Home

Ash and I have just arrived at my sister's home in Oklahoma. We are so tired! The last hour of the drive was more than difficult. I had to pray that He would literally hold my eyes open. Anyway, 8 hours later we made it half way.

Our plan is to sleep. As late as we possibly can. Then I hope to get to hug the necks of my parents, my sister, (the other one is at Disney World this week), and brother before tackling the last 6 hours. This next part of the trip is a no brainer for me. I have honestly driven it with my eyes closed on more than one occasion.

Our trip has been wonderful so far. The car was filled with Christmas Carols and Blue's Clues. Both of our hearts were happy. Each time I looked in the rear view mirror I would catch her blowing kisses to me. Oh my goodness, this child melts my heart daily. She has been in a wonderful mood all evening. Ash loves to go, go, go and when she figured out she was really going you couldn't wipe the grin off her face. We stopped a couple of times for "technical" issues like alarming pumps, running replacements, and topping off her feeds, but other than that all was smooth sailing. I just can't get over how incredibly good God is to us. I would have never dreamed that we would be heading home today. WOW! is all I can say.

Your genuine, heart felt words have brought tears to my sleepy eyes. I can't even tell you all how very much I love you and appreciate you. What a reunion we will have one day! If you haven't currently got your "ticket" for that reunion then let me know because there is nothing more I look forward to then hugging your necks the very day we arrive in Heaven. I would hate for you to miss out. I still can't believe that tonight I will be sleeping in my second favorite place in all the world, my sister's home. God is amazing. He really is blowing me away!

11/11/2008

Going Home


Do not adjust your screen. You read it correctly. We have been given the discharge orders to go HOME and not to the other hospital. Ashley Kate and I are currently waiting for our rental car to be delivered, our TPN and pumps, meds, and then we are outta here!!!

Sometime in the next day or two we will arrive in the drive of our little yellow house in Texas. Our children will be inside waiting and my best friend will be there to greet me. I can not put into words the excitement we feel at this moment.

It will be a long drive. 14 hours drive time all the while adjusting pumps for feedings, TPN, and fluid replacements. Its not easy, but its also not impossible. We have done it before. Just me and Ash on the road working our way towards home.

She still has a long, long way to go. She remains stuck at 35ccs of formula per hour with 30 of TPN running continuously. We need to get up to 65 of formula before turning off the TPN. Slow and steady is proving to be her course action. What a journey! I believe in her. She has done this time and time again and only gets better and better after each setback. I know that in time she will get back to where she was a month or so ago.

More than anything today I am amazed at the hand of God in our lives. His protection over our tiny miracle baby and the way He works through our team of doctors still amazes even after 3 years. I am truly humbled to know He love me, loves my baby, and loves my family. Wow. He is good. Even when things aren't the way I think they should be and even when things don't go the way I thought they would I still believe that He is good.

Please, please keep us in your prayers as we travel along unfamiliar roads on our journey home.

As Ornery As Ever

video

One hour its Up, the next its Down

I was feeling at ease and very encouraged by Ashley's output over the last 24 hours until I emptied her at 6 am. She had been under the marks and only been replaced once by a small amount and then the flood gate opened sometime between 4 and 6 this morning. In those two hours she dumped around 220cc of stool. I have to add that to the 190 she had put out in the first 6 hours of that shift and that officially made it the highest outpouring of fluid she has had in an 8 hour period(410ccs. She is only allowed 220). Ugh! What this means? I'm not sure. We may not be transferring after all. If they become concerned with this high output it may mean we need to stay put and scope her this week. Originally I was told we would not scope unless she made 100-150ccs of stool per kilo. I believe for the last 24 hours we are at 64/k. Not quite the 100 mark(thank you Lord) but not near the goal of 40/k. High stool output is an indicator for rejection. Actually it is the only indicator Ashley has ever shown. Now it doesn't always mean its rejection, but in her case it has to date. I'm just really confused.

Looking back over my little "poop journal" (I'm not sure if you remember me posting last year around this time about my dirty little secret I kept in my purse), but it records very high output as she was healing and advancing feedings. It took us months and months after her rejection episode to heal and get her stool under control. I vividly remember the day we traveled home on a 4 day break last November or was it December? she stooled out 1500ccs in that 24 hours. I was a nervous wreck because we had fought so hard for permission to "run" home for a couple of days. Anyway, it was all part of the healing process. I'm crossing my fingers that this too is just the healing process. I'm pretty sure we won't advance feedings again today(that will be 3 in a row) and I'm content with that. I just hope the team is as well. I don't mind getting her there slowly, I just want to be able to do that at home(safely).

I suppose it will take quite a while for us to relax enough not to be jumping on the whole rejection band wagon again. It is just so scary right now. I know her bowel was really, really sick and so its going to take time to get back to "normal" if that is even possible.

Who knows. Perhaps we weren't meant to make it home just yet. I really don't have any idea if we will be going anywhere. I guess I need to quit making myself sick and just sit back and wait for rounds. I definitely don't want Ash to be in any danger. If we leave and she needs to return in 24 hours or less then that's exactly what we will have to do. Oh my goodness who would have ever thought our life would be like this? On the other hand, who would have known how blessed it would be with her in it? I guess He was the only one.

All of this is making me old. Really, really old. Gray hair, wrinkles around the corners of my eyes, and bags(large ones!). I'm not talking about my suit cases if you know what I mean. Its getting pretty ugly around here. I could use a good nights sleep and probably a chemical peel or something like that. On second thought you can scratch that last thought cause I'm not doing anything to myself on purpose that causes me pain. Wrinkles don't hurt anything other than my ego. Hospital living isn't conducive to feeling young and energetic. It just makes you old. Plain and simple.

11/10/2008

This is really hard...

...Knowing how close we are yet not knowing when or if we will be leaving this week. Its been a really hard day and an even harder night since Dave is gone. I didn't allow myself to even be sad that he was leaving this morning because I had such hope of seeing him again tonight.

My hope would be to have a call early in the morning and be told the flight crew is on their way, but we have been given no indication of when or if a room will open up. So basically we are stuck here if that doesn't happen. Ash doesn't even need to be hospitalized. We are here because we can't leave without a pump to run her TPN. We can't get a TPN pump from a company here because we don't live here so we have to transfer to a more local hospital to have her TPN continued while we wait to contact our home health company to have orders written and supplies sent. I have no idea how long the doctors in Shreveport will want to keep us there, but our hope is that it won't be more than a day, maybe two. Dave and I are very comfortable taking care of Ash while on TPN. We did it for the first 14 months of her life. We are very, very close to home. So close that when it didn't happen it crushed the hearts of our children. They are praying so hard for her to be transferred. I had the opportunity to visit with both Blake and Al for a very long time tonight and I could hear the burdens lifting off their hearts. They are so thrilled we are coming, but sad it wasn't today. They are so happy she is getting better. Still concerned she won't be strong enough for our holiday plans, but I tried to reassure them. I can't predict when Ash gets well or how long she will stay that way, but my heart is much more encouraged this week then it has been over the last month. We really may make it after all. It looks like a possibility.

The only positive I see about having to stay here today is the weather. I am terrified of flying. Honestly, I am. I stay a nervous wreck the entire flight and pray, pray, pray. The skies have been stormy today and tonight so I am thankful that the Lord has spared me the extra stress in this situation. As I think on that, I remind myself that there may be other things He is sparing us from and that may be the reason things did not go according to plan today. I'm resting on that tonight as I prepare to lay my head down.

I didn't splurge on the chocolate although it took much restraint for me not too. I chose to stay on the plan I have been following the last 16 days. Only 2 more to go until I have completed what our goals were and blowing it tonight on my coveted bag of chocolate would have made me feel as though I failed. It may have been worth it tonight, but I'm sure I would have regretted it in the morning. I truly hope somebody out there ate some chocolate in honor of me and my disappointment.

Tomorrow is a new day. Hopefully it includes a transfer for these two Texans who are currently freezing here in Nebraska. The days are much longer here when you are waiting for that call then they were before we knew we were on our way out. Thank you so very much for your prayers. I'm serious when I say eat a bite or two of that chocolate for me. Take care guys. Trish

Stuck

We don't get to leave today and for now it seems as though we are stuck. That is more than difficult for me to swallow. Knowing that I could have held Allie tonight or seen Blake's amazing smile is more than hurtful. I'm sure its all under His control and that this too must be a part of the plan, but it doesn't make my heart hurt any less.

Ash is having a wonderful day and for that I am truly thankful. She is silly and so, so happy. I love this child so much and even on the days when my heart is sad and lonely she puts a smile on my face. I am very grateful to have our baby back. I wish you could hear her giggle or see her play. It is so incredible how well she is doing when I read back just a week or two ago. How she manages to pull this off is beyond me, but I'm happy she does.

Her output remains really high. No explanation. They will be starting a new type of blood pressure med tonight. They want to use the one that causes the kidneys to struggle. Her kidney function is good this week so they think this is a window of opportunity to try it. I'm not sure how I feel about it. All of this is a side effect of the prednisolone she is on. The sooner we can get rid of it the better she will be. They are also adding back the immunosuppresant rapimune to the mix. They would ideally like for her to maintain a level of 5 on each of the immunosuppresant drugs. Once she has managed to build those levels then we may start to wean her off of the steroid which would then allow her blood pressures to return to normal and we would be a lot better off.

I'm not sure how long we will be stuck. It is so hard to sit here when we have already been told it will just be a matter of days until we are outpatient once we transfer. I had so hoped to be decorating the trees with Al this weekend and baking warm cookies for Blake. All of our hearts are sad tonight, but still hopeful knowing we have the ok to go when a spot becomes available. Perhaps tomorrow we will all be together?

Our room is empty and sad looking. Not making it any easier to stay here. We sent all of our toys with Dave and kept only our clothes. We even sent her rug to live at one of our nurses homes until we need it again. Days like this make me want to eat a bag of chocolate. How bout you?