Ashley's Story

She will leave fingerprints all over your heart

11/02/2007

Quality or Quantity?

Ashley Kate is resting on her tummy for her afternoon nap( its has only taken us two years to get her into this position), the lights are turned down, my "candle" is glowing, and the Classical Christmas arrangement is playing. As I sit here and watch her sleep I have several things running through my mind.

The age old debate about spending quality or quantity time with our children rages in a somewhat different manner inside of me. I don't ponder the debate due to many hours on the job, or a hectic schedule that takes me away from my family. The battle between the two in my mind goes something like this. Yesterday as I expressed my desires to take Ash home sooner rather than later and tried to explain that I believe we are competent, careful, responsible parents with her health it came down to this statement. "I want her days to be fully lived not just full of "life". " I know it may not make sense to some, but I don't believe that living in this hospital room has the ability to extend Ashley Kate's life past the last breath that has already been appointed to her. She will live exactly the number of days and breathe the exact number of breaths that God has given to her in His plan for her life. Whether that be in Texas or Nebraska. Only God knows. Oh, I don't always like knowing that I don't hold the power to give her a long life, but my faith demands that I realize who is really in control.

Why can't we take Ash home and move the numbers on her pumps up and down according to the teams wishes? Here is the answer; They do not want her to go home with a central line in place. Why? Because if she gets an infection in the line and ends up in our local ICU and ends up on the ventilator and ends up on dopamine then she will not be able to be transferred back to Omaha and she would die. That is the risk we would be taking. They want me to understand that risk and that they are not willing to take it. I more than anyone understand that risk. It is very, very real. It has always been real. Ashley Kate has had a central line for all but 3 weeks of her two year life. I do know that line infections in transplant children are deadly. Trust me, I know and understand. It is the fear I have battled for over two years now, but we cannot operate and make decisions based on fear. We must allow Ash to live. I have to know that I can trust Him with her days. Our position is that Ashley Kate is at less risk of a line infection with only one set of hands entering it than multiple hands a day. I firmly stand by this conviction.


Where are we today in her recovery? I think we are in a good place. She looks better, feels better, and seems stronger than she has since the onset of her rejection. For this Dave and I are so grateful. We are making progress with her feedings. Today we are at 30ccs an hour and her TPN is down to 30ccs an hour. IF she can stool less than 350cc in each 12 hour period then we will advance her by 5 cc every 12 hours and decrease her TPN by 5cc. We are praying she can stool under that number. I feel like we are making progress and we are going in the right direction. All the while I am trying not to fear the very real possibilities of her picking up an infection while we are here. She has a head cold and she continues to throw up multiple times a day.


I desperately want to bring Ash home soon. I feel like we are in a safe place at this point. I have promised to travel back every two weeks so they can see her. I have promised to do what they have asked. I will do whatever it takes. The team would like to wait longer. They are not ready to let her go because they have seen the scenario play out time and time again with a negative outcome. I trust them and their wisdom, but I also have to trust God with Ashley's life and KNOW that He will ultimately give her the quantity of days that HE decides to. Our team of doctors can not control that, and as much as I think I would like to be in control of that I realize I am not.

Is Ash giving up her quality of life during our stay in hopes of gaining quantity? I do not know the answer. As her mommy I continue to struggle with these very heavy decisions. I believe she has better quality at home with the family, but when do we take her there? I wish we knew. Dave and I are trying to take it one day at a time. Facing what today holds for our family, but still realizing that every day in a hospital bed is a day of normalcy gone we can never give back to her. Just a little peek into what my mind is pondering today. Big stuff, huh?

21 Comments:

At 2:41 PM , Blogger KM said...

Hi Family~

What a wonderful thought out post. Gives us much direction in our prayers.

Know that I, as I'm sure are many others, pray for the decisions the doctors make.

I just caught up on comment reading from past few days. I will start the 9 at night prayers...praying for Home for Holidays...and that the doctors make wise and appropriate decisions for Ashleigh's care in coming home.

Kristi in Texas

 
At 2:47 PM , Anonymous Anonymous said...

Trish ~ I pray that God may reveal to you and Dave as well as Ashley's doctors the best time for that precious girl to go home. My heart aches for you and Ashley. You are such an amazing mommy and this is so evident in all of your posts. God knows your heart and your desires. Praying ~ always!

Love, Jule White

 
At 3:04 PM , Anonymous Anonymous said...

Really Big Stuff!! I will pray tonight for sweet baby Ashley too. I understand what you are saying and I would want my child to be home too. Better to weather the storms at home than in the hospital. Praying for stability in Ashley, for success for the feeds, for the vomiting to stop, and for the way to be made plain. I'm going to pray right now! COlleen

 
At 3:18 PM , Blogger missy said...

How I wish I had words of wisdom for you! Sadly I have none, but I will pray, I will always pray.

Missy in Ohio

 
At 3:23 PM , Anonymous Anonymous said...

It never ceases to amaze me, as I've followed Ashley's journal for over a year now, that God's hand of blessing her with such a wonderful father and mother. I truly rejoice at the work that He is doing in Ashley's life and how it flows down not only to your family and friends, but to all of us that have gotten the opportunity to share/know her through your entries. In the natural I have no idea what it would be like to faced with such tough decisions regarding one loved so dearly, but I do know that with the grace of God, you are walking by faith and doing what He has equipped you to do. Please know that our family prays for all of you each and every day. We share the tears and joys of this journey. Thank you once again for sharing your daughter with us!

 
At 3:49 PM , Blogger Laurie in Ca. said...

Praying that Ashley continues to get stronger each day and for all the decisions that need to be made between you and the doctors. Of course, the most important thing I can believe is that God is in control of all that goes on in Ashleys life.
I am so sorry that this is so hard for all of you. Prayers will continue for all of your family, and that answers for home will come soon.

Love, Laurie in Ca.

 
At 3:53 PM , Anonymous Anonymous said...

difficult thoughts I'm sure...I don't comment regularly but after witnessing a family bury their 26 yer old daughter this weekend I am struck by the thought that quantity is never enough..quality is what lives in our hearts and encourages us. This is true even when we have healthy children....our prayers are with you all ..what a joy to know this sweet little baby has a family who cares about her very best and a loving Father watching over her through them...

 
At 4:02 PM , Anonymous Anonymous said...

Aw, Trish. Your whole post tugged at my heart, but the last paragraph tore at it. Your words painted such a vivid picture of the dilemma you face. You truly have much heaviness on your heart, and I'm inspired to know that you are trusting God to help you carry every bit of it. I continue to pray for you, Ashley and your dear family as well.
Blessings,
~Toni~

 
At 4:04 PM , Anonymous Anonymous said...

Trish-you write so beautifully and are so articulte and able to post what's on your heart. I know this as a nurse: people recover better in their own surroundings that are familiar to them. I will pray the Drs. in Omaha can realize this. I can imagine the struggle that's in you regarding this. I pray God's peace over you, His strength, His mercy, and His grace. I pray for Ash's continued recovery from the rejection and numestosis. Oh, how I wish I could give you a hug.

Know we are all pulling for Ashley. She is a fighter and will make it through this.

Take care, honey.

Loving you from afar!

Shari

 
At 4:23 PM , Anonymous Anonymous said...

I found your journal through a friend in Nashville and have been reading it for several months.

I want you to know that I am praying for you... for wisdom, for peace, for joy, for your family at home, and for your sweet girl's health. I truly believe that God will guide you through each and every one of the decisions that lay before you.

I understand your desire for Ashley to enjoy a good quality of live vs. simply quantity. Her life was ordained by God before time began. Nothing can keep her from His plan.

I admire your complete trust in Him.

 
At 4:46 PM , Anonymous Anonymous said...

Praying for your decisions....for God's guidance.....you guys are wonderful Faith filled...Christian parents & I believe the answers will come & you will know without a doubt what to do. Praying..

 
At 5:29 PM , Anonymous Anonymous said...

Thank you for your perspective and display of trust in God. I pray that the doctors will be led to make the right decisions and that you and your family will have peace with the decisions that are made. Praying that you will be home with the rest of your family very soon.

 
At 5:44 PM , Blogger Holly said...

Praying for wisdom for you guys, for the doctors and for peace in your heart about it all.

God loves you and your family so much! The Smith's are praying for Ashley and for a November miracle to bring you home.
Love,
holly

 
At 7:18 PM , Anonymous Anonymous said...

I just caught up on the last few days. What a beautiful smile!! 9:00 prayer time it is.

 
At 7:29 PM , Anonymous Anonymous said...

Trish, my heart breaks for you and with you, but I truly believe that God will answer our prayers and we will see you both back home for the holidays - can't explain it; I just feel that way. He is so merciful and so good and I know He hears and cares and I'm believing for yet another miracle. My prayers continue - I will be joining the others at 9 tonight - and praying continuously as well. Love and Hugs, Grandma

 
At 7:41 PM , Blogger Melody said...

I can't even imagine having to make these kinds of decisions for my children. I will pray for wisdom for both you AND the doctors. I will pray for agreement among you so that you will have peace.

 
At 8:04 PM , Anonymous Anonymous said...

Trish ~ last time you were in Omaha she went home on a central line and everything was just fine. Why this time do they not want that to happen? I agree with "grandma" I just feel like you WILL be home for the holidays... I can't explain it either, just can feel it in my heart. Will be continuing in prayer!!!

 
At 8:18 PM , Blogger Amy said...

Praying for clear decisions to be made that you, Dave and the team can be comfortable and happy with. hugs from Longview!

 
At 9:21 PM , Blogger Elizabeth S said...

I cannot imagine...praying for you.

 
At 9:37 PM , Blogger Paulette said...

You are such an amazing articulate writer. I loved this post becasue it gives me great insight at how to pray for what you are feeling.
I agree with you and have thought on this same line for you as well. It is such a fine line for both sides because it is so evident you both want the best for that baby.
My prayers remain the same I pray she can be home by Thanksgiving and that the Lord will soften the hearts of all involved so that you may move forward all together as a family as God intended it.
Love you both and lift you before the throne always Trish.

 
At 10:24 PM , Blogger Sarah said...

I'm praying for wisdom and clarity for you and Dave, and for continued progress for Ashley. Thank you for posting your thoughts and ponderings; they always touch my heart!

 

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