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Thursday, September 17, 2009

Harley Jane lost her fight....


My lil grandbaby, Harley Jane, lost her fight here on earth...
and is now dancing with the angels.She passed away this morning, Sept 17, @ 8am,
peacefully in her grandpa Herzbergs arms.







She was only given to us for a mere 4
months, and in that small amount of time, she had totally captured everyones hearts and left an everlasting imprint. She was truly an angel here on earth. She will be greatly missed but never forgotten.









Grandma will miss her lil Chunky Monkey.... I am sooo glad that I got to see you a few days ago lil baby girl. The time I got to spend with you will be treasured forever!
You looked so purdy in your lil dress that your daddy dressed you in to take you back home....



I LOVE YOU WITH ALL MY HEART, HARLEY JANE


Sunday, July 19, 2009

Newest pics of Harley

Just a quick post to get the day started and to show off
newest pics of my beautiful grandbaby, Harley Jane ♥♥♥♥♥♥









Harley Jane, July 4th ! ! ! Kayla made the headband/bow.


OMG ~ I just remembered something: last night I had a dream that my lil Harley Jane was holding her bottle all by herself!









Harley's getting so big and she loves her binkie.


Sunday, July 12, 2009

Grandma's are amazing ! ! ! ♥

♥ My lil Harley Baby ♥
Still Sleepin!!!
LOL
♥ Grandma's are amazing ! ! ! ♥


"Chunky Monkey" LOL


OMG ~ My lil Harley Jane is 13 lbs now!!
I just had to take this pic on July9, 2009 ! ! That cute lil chubby face of hers just wants to make me squeeze her!!!
*I love u, Grandma's lil baby Girl!*
It shows just how much she has grown over the last two weeks...

On July 14th Harley Jane will be 2 months old. It definately has been a bumpy ride. No major hangups or medical suff... just dealing with trying to keep her satisfied, happy, and pain-free. I think that 98% of the time she is a very happy baby! The other 2%, well, thats another story! LOL Today I came home from being out of town for the night and Kayla and Adam seemed like they were at their wit's end, trying to figure out why lil Harley was so unhappy. She was crying/whining at the same time... "it's like a 'hurt' cry" they said and said she had been crying like that for an hour straight. It was definately a sad little cry... I held her and she would look at me and just cry this pitiful lil cry... "awww, Grandma's here lil baby girl... its gonna be okay" I told her. I brought her upstairs and turned the AC on and rocked her, held her, etc.... (Well, I remembered reading about other Hydran babies who are soothed by music! And then I remembered, one time up in my room, a few weeks ago, how harley was very fussy and I had music playing on my computer and she calmed down when I was holding her, singing to her... ) So, after trying EVERYTHING to calm her down, I told Kayla, "Music Therapy Time" ! I then turned on my radio.. and she immediately stopped crying and fussing!!! It was amazing!!! I rocked her for a while, danced with her, sang to her, then put her down on the bed, gave her a bottle and kept the music playing.
Well, thank God, she is still sleeping....
She looks like an angel...
Well, I think the bottom line is....


♥ She just missed her Grandma!!!! ♥

Monday, July 6, 2009

53 days old! ♥

My little Miracle is doing sooo good. She is 53 days old. She now weighs 11 lbs and is growing like crazy! I call her my lil 'Chunky Monkey'~ Here she is in her new swing! She loves it.

Saturday, June 20, 2009












♥ HARLEY JANE ♥


My lil Grandbaby was born May 14, 2009 with a very scary and unknown diagnosis of hydranencephaly. Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with fluid. There is no standard treatment for hydranencephaly.
Harley Jane was born with only 10% of her brain. Basically all she has is her brain stem at the base of her skull. A one in a million chance of that happening, the doctors told us. After 4 days in the hospital and the doctors giving her no hope to live past a week, Kayla and Adam decided to go against doctors orders and take Harley out of the hospital. Our thoughts were if she only has that long to be with us, she is going home so we can smother her with love and attention till that day comes... The next day they took the feeding tube out of her nose. And decided that they will feed her whenever she is hungry and love her ALL THE TIME . hehe, must be nice! LOL Well, here we are at 37 days!! And Harley is doing GREAT! She has proven all the doctors WRONG!

I am trying to stay positive and learn as much information as possible to help my grandbaby. I have read so much information and have made many new 'internet' friends that are giving me so much advice and support. I thank all of you. You are all truly angels!!! ♥

I am going to try to keep up on this blog so that I can document Harley's Journey through life and also my journey to understanding and living with Harley Jane's condition.
I still believe that everything happens for a reason.
I still believe that LOVE conquers all obstacles.
I still believe in staying positive and being optimistic!

I love her like I have loved no other!! (besides my two sons! ♥)
I love to just hold her for hours. I love to look into her big, blue eyes and her beautiful lil face. I love to rock her back and forth and I love to hear her cry! (even tho my son hates it) Because it makes me feel good that she is capable of doing so!
So, back to the journey.....
Stay tuned for Harley Jane, the miracle baby!!!!