Ashley's Story

She will leave fingerprints all over your heart



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!


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