Ashley's Story

She will leave fingerprints all over your heart

7/20/2007

Now for the good stuff

So many good and positive things were said while we were in Omaha. There was a little disappointment, but the excitement over the good stuff far out weighed it. I am going to do my best to share as much of it as I can with you.

EVERYONE who saw our Ashley had wonderful things to say about the way she looked. Keep in mind this team of doctors and nurses are the very ones who saw our sweet baby through the very worst days of her life. They have seen her before transplant when she was so weak and tiny and jaundiced. They have seen her go through transplant. They have seen her battle back from the edge time and time again. They are the ones who administered CPR to bring her out of her cardiac arrest. They are the ones who have fought to keep her alive. They are the ones who I am sure wondered just as we did if she would pull through. They are the ones who used the skills and talents God gave them to take care of a very fragile, very sick, very loved little girl. They are the ones who had a front row seat to the many miracles He performed in her life and in her health. I love this team of people and I respect their opinions and what they have to say. So when they tell me she looks better than ever it makes me smile. They thought she had grown, had matured, and HAD progressed. Those words were like medicine to a mommy's hurting heart.

Some of the biggest decisions made during our trip concerned Ash's future operations. We are going to wait until next spring to do her take down. We discussed her ability to remove her own bags and "finger paint" with blood from her bowel and they assure me she can not harm the loop of bowel that is outside of her abdomen. With this knowledge we have opted to wait and allow Ash to just be a little girl for awhile. Free from ICUs and hospitals and Omaha. We would love to give her the opportunity to feel good and see what she can learn and accomplish during this time. They did agree to allow us to return to her eye doctor and get the remaining portion of her strabismus correction completed. Ashley had the first half of the eye surgery last June and then we were called to transplant before it was time to complete it. They allowed us to keep her central line in hopes of getting her on the surgery schedule and having her eyes fixed. She has an appointment on Monday and we will know more after she sees her doctor. This surgery does not require her to stay in the hospital. She will be in and out in one day and will come home to recover.

We have also been allowed to reduce Ashley's medications list. She came home on 14 medications and now she is down to only 5. My favorite change in her meds concerns the steroid she is required to take. Her Prednisone will go from daily to every other day. YEAH!!! This is huge and it is the first step in weaning her off of it and hopefully she will be steroid free soon. We will also begin weaning her blood pressure med and in a matter of a couple of months she may be free of the patch that she currently wears. We are very excited about this. Two of the remaining three meds will be stopped at her one year transplant anniversary. So in September there will be a very real possibility of Ash only being given her Prograf(which will be a lifetime anti rejection medication) and her every other day Prednisone. These are huge changes in her routine and I believe it will make for a happier, more "normal" little girl.

Relaxing was the next thing that came up. We have been given the go ahead to try and relax with her a little bit. Not that they actually believe I will be able to accomplish this. What does this mean for us? It means that they said "GO. ENJOY taking her to visit your family.(this will include her birthday:)" We can take Ash into a restaurant, take her on vacation with us to Colorado as we watch the Tarheels play in a national tournament, take her out in public, and if I can figure out how to keep her quiet we can take her to church. She will not be able to go to the nursery because she does require special care with her central line, mickey, and ostomy, but if she would sit still and not jabber too much we might be able to sit in the balcony as a family on Sunday morning. This would be wonderful!!!

Food was next on the list. Ash can eat just about anything she wants except for sugar and sweets. She can try anything she would like. They even told me she could have sugar free koolaid(of course I would never do this, but it was nice to hear). Teaching Ash to eat will be a huge undertaking and we have been working on it, but just knowing we can feed her mashed potatoes brought a smile to my face. To this point she has only eaten organic baby foods and only had sterile water to drink. Her world is about to open up and we are excited about it. She can have a banana! I can't wait to see her try that again.

Of course we discussed her delays and the fact that she is not mobile at two years old, but our transplant doctor told us that if she has not made progress(which she BELIEVES she will) by the time she is three then maybe we will look a little harder at it. For now we are going to let Ash be Ash and continue working hard, but more importantly we are going to focus on loving this little one and enjoying each baby "step" she makes toward a more normal life. There will always be someone who out there who will want to label her and diagnose her with something, but we aren't really interested in those labels. Ashley is amazing and wonderful and her life is miraculous and we are privileged to be her mom and dad. One day at a time, one milestone at a time, one miracle at a time. This is our plan.

What a joy it was to visit with our friends. To share dinner, or conversation, or hugs, or lunch, or smiles in the hallways with them all. So many we didn't have the opportunity to catch up with, but we will see them next time. I couldn't bring myself to step onto the floor of the PICU. I'm not there yet with my own set of memories. A lot of tears were shed in those hallways not only for my baby but for my precious friends children. Someday I believe I will be able to go there, but this was not the day. I am just thankful to be raising my Ashley outside of those walls.


I know this post is long so I will close. Thank you for being here today. Thank you for praying and encouraging our hearts on this journey. Enjoy your evening with your families. Trish

11 Comments:

At 6:05 PM , Anonymous Anonymous said...

HALLELUJAH!!! Glory to God in the Highest!

 
At 6:29 PM , Blogger Carey said...

That is a lot of great news. Thanks for sharing. I pray the good news continues to grow, and Ashley thrives in everything she sets out to do.

 
At 6:48 PM , Blogger Sarah said...

Hi Trish,

Wow, you have had such a journey!

I too am so happy for you all for your great news!

 
At 6:53 PM , Blogger Shari F. said...

Trish-
I am so excited and praising the Lord for all the good news. I am excited to read all the progress reports here in the near future. I just know she will soar here shortly. Yay for Ashley!

Praising Jesus!

Shari

 
At 8:29 PM , Anonymous ohamanda said...

YAY! I'm so happy for you guys! And I'm continuing to pray for good news at every turn!

 
At 10:32 PM , Anonymous Susan Roberts said...

Praising God with the Adams family!
Thank you for sharing all your goods news with us! Enjoy the new freedom you have in raising Ashley like a normal little girl. How wonderful that must sound....to be told to GO and live life with your daughter. Love, Susan

 
At 10:47 PM , Anonymous dee buchanan said...

It is soooo good to hear of the progress Ashley is making! We are rejoicing with you!

 
At 7:22 AM , Blogger PartyofFive said...

How wonderful! I hope Ashley continues to thrive and do well!

 
At 9:31 AM , Anonymous Anonymous said...

Thanking God with tears in my eyes! I was so anxious to check to see if you had posted any more news. Jesus Praise you!!!! Colleen

 
At 2:29 PM , Blogger The Rutland Family said...

What a blessing!!!!! I am so excited about your wonderful news! You all continue to be in our prayers. Thanks you for your journal and letting me share with you sweet Ashley's life. May God continue to bless you whole family.
Because He lives, we can face tomorrow.
Pam Rutland

 
At 3:30 PM , Blogger Amy T said...

I bet you felt like dancing in the hallways! Praise God! Those are some great and awesome news items! I'm sure not having the "yucky weeks" thrown in the middle of everything will help Ashley grow faster than we can imagine! I am so happy for you guys!

 

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