Ashley's Story

She will leave fingerprints all over your heart

10/29/2007

Coming Up for Air

There are days when I feel as though we are drowning. Every day seems to bring its own set of struggles for Ashley Kate. This morning she just needs air. Simple everyday, in and out, oxygen. Most of us never even think about taking a breath. It just happens for us naturally. Today Ash is having to work for each and every one. This can get so frustrating for her and for me. She is on oxygen, has had a breathing treatment, a chest x-ray, and we just sent a viral panel from her nasal washings. All of this before noon and before rounds. I feel as though we need to string together one or two good weeks with no issues and then we will be on our way home. The trouble in that plan is getting those one or two weeks. At this point we have the ability to string together one or two days but past that it just isn't happening.

Yesterday marked 7 weeks of vomiting for Ash. There is no clinical indication that we have been able to find anywhere that is causing the vomiting. Since she doesn't show a reason for it then no one is concerned about it. I was told other than the inconvenience of it there is no reason to worry about it. Ash doesn't inconvenience me in any way, and as long as everyone thinks she is safe then I will try and stop worrying about all of the retching, gagging, and vomiting.

Despite our respiratory issues, I think she is doing well. She is currently on the floor on her play mat surrounded by her books and a basket of toys. We have done some work on her tummy, and some standing work. She has become very, very weak the past month and half. Her little arms and legs shake and shake as we attempt to re-gain the skills she had acquired. Dave and I have done some reading and some research as we are looking into some program options for her. We truly believe Ash has the potential to reach her milestones and to live a somewhat normal life. We also believe that she has suffered some mild injuries to her brain and its development. Not only in utero, but also over the course of her surgeries and transplants in the past two years. We read something this weekend that brought new hope to our hearts and a re-newed drive to help her overcome. "Believe in your child and their potential. You have nothing to lose."

That is the key to her success. If we don't believe in her and put the drive to excel in her then no one is going to. We firmly believe God has a plan for Ashley Kate. There are days when it becomes difficult to see past the current circumstance, and then there are those days that He allows us to be encouraged by something new Ash learns or does. Ashley Kate is no longer in rejection, but we are facing a whole set of side effects and current struggles as a result of this episode. If we could just get to the place where she is back home, living life, working with Ms. Sue, and playing daily with Blake and Allie, then I think we will see drastic changes in our sweet girl once again. Your continued prayers for her recovery are so appreciated. I would like to say that we are days away from returning, but the likely hood of her surviving the RSV,cold, and flu season in the hospital are not very promising. We had hoped to be moving her into the cooperative setting away from the other patients and the traffic flow today, but her respiratory distress this morning has put a halt to that plan.

Over the course of our visit, I had the opportunity to talk one on one with Blake and Al about Ash and our family. Just touching base with them and their thoughts about this latest separation. Allie and I were loading Ash and her pumps, and tubes, and machines, and IV pole in the wagon to go outside for a few minutes and I light heartedly asked, "Is she even worth all this nonsense?" To which my Allison replied, "OF COURSE SHE IS, MOMMY! She's my sister." A couple of days later Blake and I were in the car alone and we began to talk about Ash. I asked him if he thought we were making the right decisions for her or if he would do anything differently? He wondered what could we have done differently. I shared with him that some people think we made the wrong decisions for our family and for Ashley. This is how he responded to me . "Mom, I think thats why God gave Ash to us. He knew we wouldn't quit on her and He knew we would do anything for her even if it was hard. If somebody else would have taken her then they may not have tried so hard and she deserves for us to keep trying. This is what we do and I would do it the same way you are." With tears running down my cheeks I told him with all the sincerity in my heart that I loved him and could not be prouder of who he is. He just shrugged his shoulders and said, "Thanks, Mom."

We are all coping, and doing it to the best of our ability. These days are hard on Ashley Kate. They are hard on her family, but we are all committed to each other. I love my kids. All 3 of them and we are more than blessed in this life. I miss them like crazy and I can't wait until Thanksgiving because that will probably be the next opportunity we will have to all be together. Thank you again for your prayers and your support. She is tougher than most would think and determined to get out of here. Have a great day. Trish

39 Comments:

At 11:20 AM , Anonymous Anonymous said...

Stay strong in your faith..many continue to pray for Ashley Kate to go home soon. So very thankful for the time you had with your family and the wonderful way your children love their baby sister. They are all blessings from God and he protects and strengthens them on a daily basis. Have a blessed day and I pray that Ashley will stop the vomiting and her body will start gaining some strength soon!

 
At 11:38 AM , Blogger Sun said...

WOW - I am shouting praises here for your kid's hearts! God has His hand on your family - your responses, your love, your perseverance is a testament to Him. When everyone else would have quit He stands there beside us - set back after set back - He does not count any life unworthy to be saved...He has given you all SUCH a blessing through Ashley - and we are SO thankful that you share it with us!
We are praying - Sunshine

 
At 11:40 AM , Anonymous Prayer Mom said...

A CALL TO UNIFIED PRAYER
I am asking that every person who reads this unite with me at exactly 9:00 pm central time tonight for everyone to pray together at the same time for our Ashley Kate. Let us pray earnestly for the details God puts on our hearts concerning Ashley Kate, and not turn this loose until we feel a victory for our Ashley Kate. It is time to rise up and come against this illness in this precious child, and pray her down a permanent miracle. Are you with me?

 
At 11:42 AM , Anonymous Anonymous said...

How beautiful are all your children. They have beautiful hearts:) Sorry to hear she is still vomiting. So sorry...Praying here in the soon to be frozen north. We love her! COlleen

 
At 11:44 AM , Anonymous Anonymous said...

I will pray tonight with you Prayer Mom!! Bring it! Colleen

 
At 11:54 AM , Blogger Alicia said...

What a great idea. I'll be on my knees at 9:00 tonight. Trish, your family is truly beautiful. Hang in there!

 
At 11:58 AM , Blogger Laurie said...

Trish,
You just hold on to your hope in the Lord and we will be praying out here for Ashley and your family. She is worth every minute of love and effort. Your children are so wise for their age and it shows you and Dave have raised them real good. Ashley is a Mission of Love and so many are praying for her. I will be praying tonight with prayer mom at 9:00pm. I pray for your faith to be strengthened today.

Love, Laurie in Ca.

 
At 12:12 PM , Blogger CrownLaidDown said...

I am so proud of your family...you are doing the thing. And it makes Jesus smile.

The Smith family is praying for you 9 tonight and always.

As far as when you go home...hold tight and fast. God is able to do this thing in Ashley...even faster than two weeks. That is my prayer!
Love you much in Christ,
holly

 
At 12:14 PM , Anonymous Jule White said...

Trish ~ I am so thankful for the time you had with your kids, Dave and Grandma. You have three amazing kids. What beautiful hearts they have.

Praying for her bowel to tolerate her feeds and for her breathing. Praying for you Trish as I know your heart is heavy. I will continue to hold you close and lift you up in prayer.

Hug and kiss that precious miracle from another Texas mom. She is so worth every second of worry, love, prayer and hope.

Will be praying at 9:00pm tonight!

Love, Jule White

 
At 12:20 PM , Blogger Amy T said...

What an awesome young man and young woman you are raising! Whenever you question yourself, just remember what Blake said. While this has been so hard on your family, it has shaped you all to be so much more than you could be otherwise. Y'all have blessed me. Thank you. Praying for Ashley's breathing to get better. So glad that she is feeling well enough to sit up and play though.

 
At 12:55 PM , Blogger KimberlyDi said...

Your daughter's words made me smile. Your son's words gave me goosebumps and tears. Such a wise wonderful boy. God couldn't have blessed Ashley with a more wonderful family.

 
At 1:00 PM , Anonymous Grandma said...

ASHLEY KATE IS WORTH EVERYTHING THAT GOD HAS IN HIS PLAN FOR HER!!!!! There is no way this family could ever quit working for our little Gherkin! She is so, so special to us and more importantly she is special to God....My prayers will not stop and I will be on my knees before His throne at 9:00 tonight. Thank you Prayer Mom! I miss you Ash and Trish - Praying to see you back here sooner than you think -- Love and Hugs, Grandma

 
At 1:02 PM , Blogger Gretchen said...

I know these times are incredibly tough, but the character of Jesus in your family shines through every word you write. Hang in there. Praying.

 
At 1:03 PM , Anonymous Anonymous said...

I will be praying now, and at 9 tonight.
Beth

 
At 1:04 PM , Anonymous Anonymous said...

The responses your children gave you brought tears to my eyes. Wow! And you can count me as another person praying for you at 9. May the Lord be with you today in a very special way.
-Cari in Arkansas

 
At 1:33 PM , Blogger Julie said...

I'm so glad that your family had an opportuity to reconnect after a long and difficult time apart. I will continue to pray and petition the Father for those several weeks of health so that the light at the end of the tunnel might begin to show itself. You are precious to my family, and we look forward to witnessing what else God will do in this baby girls life. God bless you all.

 
At 2:00 PM , Blogger Elizabeth S said...

That is exactly why God gave Ashley to you. Blake was right! What great kids. Hope you are okay, praying for you.

 
At 2:01 PM , Blogger Elizabeth S said...

I will also be praying at 9:00!

 
At 2:02 PM , Anonymous Kathleen said...

Blake and Allie are wonderful kids! Will be lifting up Ashley tonight at 9 as well.

 
At 2:23 PM , Anonymous Anonymous said...

When Lazarus was sick, Jesus was very much aware. I could appear that Jesus was too busy, didn't care, etc, but in fact he knew that it was "for God's glory". Your situation is not much different, God is very much aware and is using this situation for His eternal glory..your family is a tremdous witness, possibly the only Bible some would read. My Bible says one sinner is worth the whole world. God knows best..keep following Him! We are still praying for you in central IL

 
At 2:28 PM , Blogger jtcosby said...

AWESOME! Love the talks you had with Blake and Alli!! You have amazing children! All three of them! Praying for Ashley!!

 
At 2:51 PM , Anonymous Dee Dee in NC said...

Made me cry - again.
Praying for all of you.

 
At 3:06 PM , Anonymous Anonymous said...

Your children are amazing; all three of them. The answers to your questions for them shows their maturity and the parenting they receive from you and Dave. I know things are a struggle with Ash. Stay strong..keep praying..in the Word..I pray Ashley comes off of the o2 soon and that her little body will turn around and heal soon. Know I am still praying and I am glad you had a beautiful time with your family.

Loving from afar!

Shari

 
At 3:10 PM , Blogger Wendy said...

Your son's words brought tears to my eyes. Such a deep and thoughtful response. I will be praying at 9 tonight.

I am learning about brain injuries in young children firsthand. They have miraculously resilient brains, and can overcome much more than adults can. Once Ashley is physically better her little brain is going to amaze you. My little girl has already shown me this miracle at God's hand. You, too, will see it.

 
At 4:29 PM , Anonymous nikki said...

I'll be praying too together with the rest. Praying for God to string a couple of good weeks together and praying for your endurance as you spend these many weeks apart. Beauty from ashes, Trish; it's His promise. (I remind you only as I also try to remember.)

 
At 5:48 PM , Anonymous Prayer Mom said...

Trish, right before 9:00, please put some oil on Ashley and lay your hands on her while we pray so that we may meet the conditions in the word of God. You will be our Point of Contact.

At that time, I am going to write my prayer here and if everyone would write their prayer out, we will be able to be specific and come into agreement with each other in a way more effective for our little Ashley. See you all at 9:00.

 
At 5:53 PM , Blogger Keri Ann said...

Wow! Your older kids' words brought tears to my eyes! How blessed you are to have such wonderful children -- Ashley Kate included, of course. I'll be continuing to pray for Ashley's quick recovery, and for her to supernaturally avoid all of those yucky colds and viruses! We know that God can protect her from them, even though the germs will soon be plentiful.

 
At 5:58 PM , Blogger Sun said...

My family will be on their knees at 9 for yours. Sunshine

 
At 6:13 PM , Anonymous Anonymous said...

Hi Trish - I am so glad to hear from you! I am sorry that today is a "bad" day for you guys!

Honey, you are so intuned with your child, like I am with mine. If you feel in your gut that something is just not right with the continued vomitting, don't stop asking questions. YOU are her MOMMY and God gave HER to YOU! Listen to Him and do what YOU feel like He wants to do. I would be very hard for me to accept that my child has been vomitting for several weeks and to have to answer as to why. Go with you gut! You are such an AWESOME mommy and you do what YOU feel is right for Miss Ashley Kate! I hope I didn't offend or confuse by stating my opinion. I have just been in a place before with my son. They told me "oh, I know he is vomitting and having water stools but nothing is wrong with him." Turns out he has salmonella and staph and landed himself in the hospital for 7 days and a major surgery. It was all because I would let it go. It just wasn't normal!

Can you please tell the address and exact room you are in again, please, so I can get it right. I have your CD and care package for Ashley and I would like to ship that off...but I am unsure of the exact room now. I can't wait for you to get it!

Hang in there - so many are praying for you! I met with Suzanne Sanders (isn't she precious?), for coffee. We jsut talked about how much we admire you and how much you teach us about the type of people we want to be! THANK YOU FOR BEING YOU!

In Christ,
Amy

 
At 6:33 PM , Anonymous Anonymous said...

Hey Trish,

I look in on a few kids and sometimes I get their specifics mixed up. I cannot remember whether Ashley was off TPN. Are you aware that the lipids are notorious for causing nausea? No one really talks about it, because there are few other choices. But the lipids do indeed, make many of the kids vomit, and dry heave when there is nothing in the stomach. I know this does not make it any easier for either of you, but it might just be frustrating rather than frightening.

Sleep well,
M

 
At 6:39 PM , Anonymous Vicky said...

The next time someone suggests that this isn't fair to Blake and Allie, just refer them to their quotes here. They are amazing children, and much of that is because they have amazing parents who have taught them to love and serve God and to love others as Christ loves others. Way to go Mom and Dad!
Cotinuing to pray that Ashlie is protected from all germs while in the hospital. Praying that you will be home by your Christmas goal. Thank you again for sharing your journey. It has touched and changed my life forever.

 
At 7:52 PM , Anonymous Prayer Mom said...

Fellow warriors, please read my prayer ALOUD and agree. The spoken word has creative power. Then add your prayer under mine and we will read yours ALOUD and agree with you Just pray what God tells you to pray.

Lord God, I come before you tonight asking for a miracle for Ashley Kate. Your word says that we should lay hands on the sick, anoint with oil, ask in the Name of Jesus and the sick would recover. Lord, we are meeting that condition right now. Lord, I am not asking for a few days strung together or a few healthy weeks strung together. I am asking, Lord, for a miracle healing that starts this minute and continues without backtracks, pauses, side trails, or interference in a most God-speed directly forward manner until Ashley is in perfect permanent health. I believe there is nothing to hard for you, Lord. I also believe it is not your will that your babies suffer. Lord, this night, deliver Ashley from her pain and illness, and make her a walking, running, giggling miracle in the mighty name of Jesus I ask it. Amen

Someone else now pray what God tells you to pray.

 
At 8:00 PM , Anonymous Molly said...

Praying now @ 9 & when ever I think of you!!!

 
At 8:10 PM , Anonymous Lori said...

Praying for all of you!

Love,
Lori

 
At 8:39 PM , Blogger Fiffer said...

God is awesome! I haven't had a chance to check your blog for a day or so and tonight I was feeling a need to be praying for you. It wasn't till after I read these comments that I realized why I needed to pray...because it was a time of prayer for your family! Truly, in the midst of checking my email I felt God nudging me to stop reading my email and pray for your family! What was on my heart tonight was prayers for you to stay strong, despite how hard it must be to have Dave, your mom, and the kids leave, and not be on your way home with them along with Ashley. And of course I continually pray for complete healing for Ashley.

I'm glad you had such a sweet time with your precious family. Take care, my friend.

Love, Martha

 
At 8:56 PM , Anonymous Anonymous said...

Lord,

Tonight I lift up baby Ashley, Trish, David, Blake and Allie and ask for a reuniting of this family. I ask that Ashley would be broughtr to a higher level of health than she has thus far experienced. I pray for her healing and ask that many others would join me. Please take away Ashley's suffering. In the name of Jesus, AMEN

 
At 9:20 PM , Anonymous Suzanne said...

Oh Trish.....I had tears in my eyes ....to hear how your children responded to those questions. What wonderful people Allie & Blake are.....& it is evidenced by the upbringing & ways you nurtured....taught them about God...& how to be more like HIM. That speaks volumes to all. I am prayerful that my children will take in all that we teach them & that God will help me & my husband in the ways we are lacking so that they will grow up to have the type of maturity similar to that of your two eldest kids & how it was displayed. WOW. Praying for sweet Ash & her breathing....praying that you will get those two weeks or whatever it takes to bring you home.....& that God's will be done.
Sisters in Christ...

 
At 9:53 PM , Blogger ManyBlessings said...

It's 10:52 here and I am praying.

Your little girl has taught me so much.

Your Blake and Allie have brought me to my knees.

No wonder Jesus asked us all to have a "child-like" faith.

d

 
At 12:47 AM , Anonymous Anonymous said...

My heart stopped when I read your first sentence!

I'm so glad you got to spend time with the older kids--aren't pumpkin farms fun?

I worry about the doctors claiming nothing's wrong if they can't find a reason for Ashley's vomiting. I hope you will look into homeopathy for a remedy for it. I'm sending you a couple of address to check out. Please consider looking into these safe, EFFECTIVE remedies. They are very gentle and can't hurt, although the doctors may say otherwise--they think their form of medicine is the only way. However, the site on charcoal and how it relieves gastro-intestinal disorders and absorbs poisons is known to them--it's in every ER for poisoning. It works. I also included a site on colloidal silver. It kills all bad bacteria, viruses, fungus--even antibiotic resistant bugs (so does olive leaf extract, wild oregano oil and others--they haven't found anything these won't kill); a few drops in water sprayed on everything in your room will keep you much safer during flu season. Good luck!


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