Ashley's Story

She will leave fingerprints all over your heart

11/19/2007

Stolen Secrets and Spoiled Surprises

Dave and I have been holding on to a secret. A big one. A secret so big that we couldn't wait to share, but we were forcing ourselves not to in order to pull of the surprise. My heart had been set on it, but it is not to be. Today's events stole our secret and spoiled our surprise. Disappointments come and go in this life. Some are bigger and harder to swallow than others, but in the end I usually learn something from them. I'm counting on this one to hold an important lesson for me. I just haven't had time to figure it out. When I look back over the larger disappointments in my life something good and beautiful eventually comes around. So although my heart hurts over the loss of a privilege that had been granted, I secretly wonder what lay in store just around the corner. It could be something wonderful.

One of the results of our meeting on Friday was that we had been granted the opportunity to slip out of Omaha on a 3 day pass. A pass that had to be one of the biggest and best secrets I have ever held on to. A pass that was going to be the surprise of a lifetime for our family on Thanksgiving day when Dave, Ash and I rang the doorbell and joined our family for the first holiday in 3 years. Ashley's first family holiday ever. The joy and anticipation I have been holding in my heart for the last few days has kept me awake at night as we planned our surprise. I was so looking forward to the fellowship, the memory making, the photo opportunities, the late night games of sequence, the fun of Christmas shopping with my sisters, and the happiness on every one's hearts. It is not to be. We will not be secretly traveling all through the night in order to arrive at my sister's on Thanksgiving day, and there will be no surprise.

As I sit and rock this precious little girl all snuggled up on my chest in her flannel night gown I still am thankful. My eyes sting with tears because I truly am disappointed, but my heart swells because she is here with us. She is the sweetest thing I have ever loved, and although the judge was correct when she warned us to prepare to have broken hearts as we left the courthouse that day we have never felt more blessed. How could she have known that loving Ashley would not only be the biggest heartache of our lives, but the biggest blessing as well. She had no idea how God had smiled on us that day.

Ash is still struggling as we try and use diuretics to pull the fluid off her chest. She is sating in the low 90's with the help of oxygen and has managed to fight off the ventilator so far. Her blood gases are beautiful and at this point it looks as though she is only fighting fluid that has shifted out of her vessels and into her lungs and tissues. We have not identified any source of infection and she has not spiked a temperature. The fluid balance is one of the trickiest parts of transplant. Ashley's has never been that stable and it seems as though it will be the monster we fight over and over again. She is so sensitive and can easily slip into respiratory distress in just a matter of hours once she begins to shift. This how she woke up today and this is why we now sit in the PICU. I hope it is worked out quickly and I hope she will be allowed to begin feeds again tomorrow.

Thanksgiving day will prove to be about the same as last year. Dave and I will sit in the PICU taking turns rocking our baby. The only difference will be that she will not be saying, "My mama" over and over again for our camera. Oh, how I miss her sweet, sweet voice.

She is resting now and I sit and stare. I had wanted a low key day of folding laundry and listening to Christmas carols. Silly me. I should have known that nothing goes according to my plans. God is still God and He is still the One in control. I don't know why we are where we are, but He does and I have no choice but to accept it. Goodnight my friends. I hope your holiday will be full of fun, fellowship and family. There is nothing like it and I really, really miss it. Thanks for praying for Ash today. Trish

40 Comments:

At 12:09 AM , Anonymous Anonymous said...

Oh Trish, I am so sorry for your disappointments. My heart aches for you and the family. I wanted so badly for Ashley to be home for the holidays. I will keep praying. Things can turn around for the good just as fast as they have turned around for the bad. We already know how strong you, Dave and Ashley are. Keep your head up, keep praying and continue to have faith...I think God has something wonderful in store for you. You are the most amazing person I know and I have never met you before. I am so thankful that I found your site. I am going to go and start praying for your miracle right now. Good night Trish...stay strong. Michelle

 
At 12:22 AM , Blogger Toni said...

Trish,
My cousin is going through a most painful challenge as well right now. His 3yo son has Leukemia. His wife seems "wired" very much like you in a few ways; she's incredibly strong, has great passion for making memories with family and loves the holidays. I can only imagine how very trying this time of year must be for any family facing a serious illness, health concern or loss.

I sooo wish this wonderful surprise had worked out for you, Trish. I'm heartbroken for all of you that it won't be. Please know that others really do care about your hurts and that we are praying for you in the midst of them.
Blessings,
~Toni~

 
At 12:48 AM , Anonymous Anonymous said...

Bless your heart!! Trish I am so very sorry that your plans didn't work out! May God Bless you and your family in a very special way ...over and above how He already has!!
You are such a kind-hearted yet strong person...and so is little Ashley...I just know that you will both pull through this with leaps and bounds!
Still praying and hang in there.
Thank you again for sharing your family with us!
~Okla

 
At 1:15 AM , Anonymous Dee Dee in NC said...

I'm so sorry. I know your pain must be great. I will be thankful with you, though, that you can hold that breathing child in your arms, and that your older two, although painfully distant, are in good health. Praying for healing.

 
At 4:37 AM , Anonymous Anonymous said...

I have been reading your posts for over a year and this is the first one that I cried while reading it.

It is not that the others did not touch me as much, it is that I can tell so strongly how very sad you are that your hopes have been put down again for a Thanksgiving with family. Oh, how I wish that could have been for you!

I am so sorry, I am praying that you find peace today and during the coming weekend.

 
At 5:15 AM , Anonymous Anonymous said...

I am so sorry that this did not work out, you are all in my prayers.
Beth

 
At 5:48 AM , Anonymous Courtney said...

My eyes are full of tears for you and the dissappintment you feel. What a wonderful surprise that would have been! Now we pray that you can be granted a Christmas surprise with your whole family.

Praying that Ashley awakes this morning to a better day, that she can avoid the vent and that hse will be out of the PICU quickly! And that you will be filled with comfort and peace as you snuggle with your little blessing this Thanksgiving.

 
At 6:43 AM , Blogger Elizabeth S said...

Oh Trish, my heart breaks for you. I can't imagine how disappointed you are. I will pray for Ash today, that her fluids get at least back to where they were so you can leave the PICU. I will also pray for a special blessing on Thanksgiving for you, Dave and Ash as you stay in the hospital. I am so sorry.

 
At 6:50 AM , Blogger ManyBlessings said...

Blessed assurance, Jesus is mine!
Oh, what a foretaste of glory divine!
Heir of salvation, purchase of God,
Born of His Spirit, washed in His blood.
This is my story, this is my song,
Praising my Savior all the day long;
This is my story, this is my song,
Praising my Savior all the day long.

Perfect submission, perfect delight,
Visions of rapture now burst on my sight;
Angels descending bring from above,
Echoes of mercy, whispers of love.
This is my story, this is my song,
Praising my Savior all the day long;
This is my story, this is my song,
Praising my Savior all the day long.

Perfect submission, all is at rest,
I in my Savior am happy and blest;
Watching and waiting, looking above,
Filled with His goodness lost in His love.
This is my story, this is my song,
Praising my Savior all the day long;
This is my story, this is my song,
Praising my Savior all the day long.

 
At 7:11 AM , Anonymous Manda said...

I've never commented on your blog, though I've been reading for quite a while. My heart was so sad this morning when I read that you had planned to surprise your family for Thanksgiving, only to learn you wouldn't be able to. I am so sorry and can't imagine how your heart is hurting. I'm praying for you this morning.

 
At 7:42 AM , Anonymous julie said...

Trish,

I'm so sorry. It's so hard when our hopes come crashing down, especially when it involves the health and life of one of our little ones.

You all are in my prayers.

Julie

 
At 7:51 AM , Anonymous Anonymous said...

I have this beautiful email I want to send you. This is the text to it, but it won't copy the pictures, and the pictures really do it justice! Do you have an email I can send you this to? Corey, in Missouri


The smell of rain



At the end of this story, it gives you two options. I think you will figure out what option I chose.



A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery.


Her husband, David, held her hand as they braced themselves for the latest news.
That afternoon of March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver couple's new daughter, Dana Lu Blessing.



At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature.

Still, the doctor's soft words dropped like bombs.

"I don't think she's going to make it," he said, as kindly as he could.


"There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one"


Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived.


She would never walk, she would never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on.



"No! No!" was all Diana could say.

She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four.

Now, within a matter of hours, that dream was slipping away

But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love.

All they could do, as Dana struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl.


There was never a moment when Dana suddenly grew stronger.

But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there.


At last, when Dana turned two months old. her parents were able to hold her in their arms for the very first time.


And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted.


Five years later, when Dana was a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life.


She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story.


One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing.


As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent . Hugging her arms across her chest, little Dana asked, "Do you smell that?"



Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like r ain."


Dana closed her eyes and again asked, "Do you smell that?"


Once again, her mother replied, "Yes, I think we're about to get wet. It smells like rain."


Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced,
"No, it smells like Him.



It smells like God when you lay your head on His chest."



Tears blurred Diana's eyes as Dana happily hopped down to play with the other children.


Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along.


During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.


You now have 1 of 2 choices. You can either pass this on and let other people catch the chills like you did or you can delete this and act like it didn't touch your heart like it did mine.

IT'S YOUR CALL!


"I can do all things in Him who strengthens me."


This morning when the Lord opened a window to Heaven, He saw me, and He asked: "My child, what is your greatest wish for today?" I responded:
"Lord please, take care of the person who is reading this message, their family and their special friends. They deserve it and I love them very much" The love of God is like the ocean, you can see its beginning, but not its end.

________________________
This message works on the day you receive it. Let us see if it is true. _____________

ANGELS EXIST but some times, since they don't all have wings, we call them FRIENDS.

_________________________

Pass this on to your true friends. Something good will happen to you at 11:00 in the morning; something that you have been waiting to hear.

This is not a joke; someone will call you by phone or will speak to you about something that you were waiting to hear.

 
At 7:52 AM , Blogger Sun said...

Oh tears sting my eyes as I read these words...how your heart must hurt. I think though that you are right God has something amazing around the corner - you are so precious. God is SO evident in you - your words, your heart which you share, and your faithfulness to keep us updated...THANK YOU! If I could I would just hug you right now! We will be in continued prayer! Sunshine

 
At 8:18 AM , Blogger Laurie said...

(((BIG HUGS))) to you this morning Trish for your disappointed heart. I am so sorry to hear of the surprise interrupted and ask God to hug you extra gentle today. I am praying that this set-back is preparation for her to stabilize and be able to be home for Christmas. I know this does not make you feel comforted right now and I will be praying for you. Ashley is so delicate but her God is HUGE. I am so sorry for your hurt pray He gives you much needed love and comfort today. Always praying for the miracle that is right around the corner for you.

Laurie in Ca.

 
At 8:32 AM , Blogger Kelly said...

Oh Trish! My heart breaks for you! I will be praying for you and Dave this Thanksgiving. I pray for Ash all the time. You know, I haven't commented on this yet, but I just want you to know how much joy I felt when you started sharing your heart again. you have such a beautiful, tender heart, and that's why God has given you this precious child. Thank you for loving her; it does a world of good for my heart, as well as the hearts of many others.

 
At 8:34 AM , Anonymous becky said...

So sorry Trish! I'm praying for God's awesome presence in the midst of your disappointment. You're surrounded by prayer warriors continually lifting your family to Him. Thank you for the privilege.

 
At 8:46 AM , Blogger Elizabeth said...

All I can do is pray....that's what I'm doing for you!
Love in Christ,
Elizabeth

 
At 8:52 AM , Blogger camille said...

I'm so sorry about the disappointment. Hold on to the thought that something beautiful will come around. I really admire your faithfulness during this trying time.
Continuing to pray for your sweet Ashley.

 
At 8:55 AM , Anonymous Anonymous said...

Praying all the time!!

Staci Barham

 
At 9:20 AM , Anonymous Anonymous said...

I am sorry Trish....thank you for your wonderful words that are such a testament to all of us....we are thankful for you and your family. Prayers never cease for you and your family....Mistie

 
At 9:37 AM , Blogger Sarah's In the Midst of It said...

Oh Trish, I'm so sorry about your hard disappointment. Having hopes dashed is really hard to swallow.

I am praying for another miraculous upswing in Ashley's condition, and that God surrounds you in a big way today as you're in the PICU.

 
At 9:38 AM , Anonymous Cari said...

I am so sorry about the turn of events in the last couple of days. I don't have eloquent words, just prayers that will hopefully ease your pain. I pray God's peace and healing today.
-Cari in Arkansas

 
At 9:39 AM , Anonymous Kathleen said...

I will be praying! May something truly beautiful come out of this disappointment.

 
At 9:52 AM , Blogger Sun said...

I am sorry to leave another comment but I have your package all ready (I know it has taken forever...sorry) but I wanted to know if you by chance had an updated address? Much love - Sunshine

 
At 9:58 AM , Anonymous lori said...

I am so sorry that your plans did not work out. Just know we are praying for you. Lots of prayers & hugs coming your way.
Blessings,
Lori and family

 
At 10:03 AM , Blogger PartyofFive said...

I am so, so sorry. This post makes my heart ache so much for you all. I am praying for a Christmas miracle!

 
At 10:12 AM , Anonymous Anonymous said...

Thinking of you, and praying much. So sorry to hear this. Wish I could do more.

Lee

 
At 10:12 AM , Blogger Morgy's Mama said...

Trish and Dave ~ I am sure your doctors are more than capable of caring for Ash, and my sharing this is not to question them. I just feel that we went thru something "similar" (and I use that term loosely) for a reason. Morgan had a great deal of fluid overload after her thrombosis. We did chest tubes, vents, etc. One thing that finally worked was Octreatide (sp?). Morgan's doctors were hesitant to use it, but it became our only option. It took a little longer than the recommended time to allow it to work... but her doctors at TCH gave it more time and it did serve its purpose. You may just mention it to your doctors. It may not be useful for Ash, but I just wanted to share that with you. Still praying and thinking of you this holiday.

 
At 11:49 AM , Anonymous Jessica said...

Trish, Ashley, and Family,

I'm so sorry about your disappointment with this holiday season after being slow close. I will be praying not only for Ashley but for your entire family as you spend yet another holiday away from your family and friends that the holidays are made of. I'm sure that your family is understanding and blessed by little Ashley.

((HUGS))

Jessie

 
At 12:25 PM , Anonymous Jule White said...

Trish~

I am so sorry for your disappointments. I know you are heartbroken - I can feel it in your post. Please know that I continue to hold you so close and pray continually for precious Ashley and your entire family.

Please hug and kiss your little miracle from me!!

Love, Jule White

 
At 1:15 PM , Anonymous Anonymous said...

what a beautiful surprise that you planned for your family! How much joy it must have brought you and Dave to plan it and dream about it.
I pray that even though it didn't actually happen, the very fact that you tried will mean alot to your family tomorrow. we trust God to find unexpected ways to bring joy to you all there in Ohmaha. It is a Huge disappointment though! Praying in central IL

 
At 2:04 PM , Anonymous Anonymous said...

Really, really stupid question and certainly not one meant to offend. But is there seriously no hospital in all of Texas that is closer than this one? A hospital that could tend to the needs of your child and still allow you to to not be forced to live out of a suitcase for months on end?

Is Omaha truly the only place that can care for Ashley?

 
At 2:44 PM , Anonymous Anonymous said...

Trish,
Since I don't have time to send you a card through the mail, as I did before, I have to venture out of lurker status to tell you how heavy you have been on my heart these past few days. I am sooo sad for you and Dave an sweet Ashley, that you aren't able to be together with your family as you'd been planning. Your disappointment is palpable. My heart aches for you.

I will continue to pray for healing for Ashley and for continued strength for each of you. I am utterly amazed and in awe of your faith and feel truly blessed to be able to lift you up in prayer. It is teaching me new things every day.

Keep your chin up,
G from Ky.

 
At 3:45 PM , Anonymous Anonymous said...

Note to "really really stupid question":
Even though it's not my place to answer your question..which by the way I don't believe there are any stupid questions, but from what I have read in this journal...and I do believe there is a very recent post about it...Trish & Dave have put some extremely careful thought into choosing this hospital and these doctors. There is a reason they have been chosen.
I'm sorry if I have spoken out of turn here. I do not mean to offend anyone.
It is a very nice thought.
Trish I do apologize if I should not have posted this. I just felt compelled to do so!
Still praying!

 
At 4:08 PM , Anonymous Anonymous said...

I can't help it but ache and cry for you. I also see the blessings in your life and so proud of how you deal with your "life." Keep your focus on Jesus and this fight will be won soon.

Loving you from afar! Praying too!

Shari

 
At 5:47 PM , Anonymous prayer mom said...

I have and will continue to pray for Ashley and you all.

 
At 6:09 PM , Blogger Haylee Gabrielle said...

as a mother, my heart is hurting right there along with you! you are so very right, His plans are bigger and better than ours. one day you will understand, even though right now it hurts and doesn't seem fair.

keep being strong for your family, but let it out when you need to for yourself.

i wish we lived closer (i'm in california), i would definitely come and visit you. but i will definitely send my prayers up for you and ash and your family.

love,
Melissa

 
At 7:49 PM , Anonymous Anonymous said...

Hi Trish - I have read this post several times. I wanted to wait to see if God would give me some "magic" words that I could speak to you to help lighten your broken heart. No words have come.

My heart is broken for you. I know how very special that would have been for all parties involved. The only thing I know is that God DOES have His reasons and I am confident that if He felt it was completely safe for you to venture out to surprise your family, He certainly would have made in possible. You are so good in trusting Him and accepting what He says is right for your life. I just want you to rely on that. Honey, every tear your cry, He cries with you and for you! Lean on Him...there is no one, other than HIM that can give you the peace you need.

You are so precious and while you may not get to spend the Holidays as you would like to...and ANYONE would like to...I believe that God will truly bless you and honor you for doing the right thing, even when it's hard. You have remained faithful to Him, Trish. You have continued to praise Him, Trish. And you are being obedient to His calling and right now His calling for you is for you to care for this precious angel that He has entrusted to you. Remember the story of Job? You will be blessed and honor for the job you are doing and for your unwavering faith!!

Much love - I hope there is something in all of these posts that you can gain some comfort from.

Hug that baby girl and give her a kiss for Kyle and I.

Praying..
In Christ,
Amy and Kyle

 
At 9:05 PM , Anonymous dee buchanan said...

I am soo saddened by the disappointing news. Jeremiah says it well..."I know the plans I have for you, plans for good and not evil, to give you a future and a hope." Somehow, this plan is good, because it's God's plan. If Ashley miraculously gets herself well and out of picu, and she can have a day pass, you are more than welcome to come here for Thanksgiving. Mom and STeve and the girls will be here. It's a 2 hr. drive due east, and we live just off of hwy 80, and about 2 miles north. Give us a call if she makes a miraculous turn around, for we will call you family. I know it's not the same, but it beats a hospital anyday. We do not have pets or mold in our home. E-mail me if you come: setfree-@hotmail.com

 
At 9:09 PM , Anonymous liz82 said...

reading this puts me into tears as i hold my baby girl . i couldnt imagen how hard it must be for you . i think of you and your baby girl . your story breaks my heart i bealive in mircales and i pray god brings one for your family. i pray every night for you all . you and your husband are very strong people your little girl is very loved i can see. he is very beautiful god bless her . i can see why you love her so much . children are such a beautiful blessing fom god . i will keep you and your baby in my prayers . my heart goes out to you and your family . much hugs to you ...

 

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