blonde bob, a big hairbow & a new heart

 

when i was growing up, i remember my dad making the statement

"some days are diamonds"...

a few weeks ago

despite a forecast for a rainstorms

& huge dark billowing clouds

i had a diamond day.

i raced with the devil to get to the park i had chosen to photograph

sweet baby girl hutton. 

i prayed, frantically, that the rain would hold off.

her mama, my sweet friend jill

& i had talked about this day for a while.

they would be here in atlanta (down from tennessee) for about 24 hours. 

 hutton would see the 

specialists at our children's hospital who follow her care after her heart transplant last july.

i would have the honor & privilege of photographing this beautiful sassy miracle baby.

finally.

when little miss spunky hopped out of the car, in brother's cowboy boots

with a thick bouncing & behaving blonde bob

& colossal hairbow

she took my breath away.

it wasn't until a few days later i realized

i had only seen her when she was here at the hospital....

and sick.

i have facebooked & tweeted & blogged asking for prayer for this baby girl

who was seriously ill for some time.

let me share her daddy's words~~

"Jill and I went faithfully every two weeks to the OBGYN office to follow up with ultrasounds to see if anything had miraculously changed. The doctors very lovingly would say they are sorry that the baby had not died yet, but it would only be a matter of days and when Jill no longer felt the baby moving, to come in and have her delivered....still born. We spent time looking at burial plots, discussing funeral scenarios and ultimately we buried Hutton three or four times, emotionally knowing that the inevitable was that we were not going to enjoy the cries of this precious baby or the smiles of our other kids as they love on their little sister. These were dismal times in our family.

The strangest thing happened, however. Every two weeks we kept feeling Hutton kicking and punching on Jill's stomach and even though we couldn't nor could the doctor's explain it, Hutton was still with us. We maintained hope and continued with so many others to pray for a miracle.

Medically speaking, Hutton was not supposed to have a birthday, but on September 11, 2007 we were blessed, while wiping back the river of tears, to witness the birth of our precious number 5 at the Children's Hospital of Philadelphia. Literally moments later, Hutton was rushed to the adjacent room to have emergency surgery to install a pacemaker, the first step in trying to keep Hutton alive. A month later, Hutton had her second heart surgery, the installation of a shunt to try and get enough blood flowing to her lungs to sustain life. After making it into the world, through her two initial heart surgeries and all the many other side issues that threatened her life, we were told that her liver was going to quit because she had something called biliary atresia-something that noone recovers from.

The prayer warriors of the world united during not only the biliary atresia phase but through every single step of the way for Hutton and the fact of the matter is that prayer changes everything. Her liver is now completely normal, she has gained the weight to be equal to that of a normal four month old and she has even made it home to Knoxville to sleep in her Bunny Bed with her four other siblings standing close guard near by.

On June 28, 2010 we journeyed to Philadelphia to undergo, hopefully, the final surgery on Hutton's heart, her Stage 3 which was supposed to make her heart as "normal" as possible by increasing her blood oxygen level and restoring her "blue color" to pink. Unfortunately, at the time, this did not take place due to the pressures in her lungs and heart not being in harmony for a successful surgery.
Through the past year we have made several attempts to undergo a Stage 3 for Hutton but physiologically it just would not work.  After much prayer and deliberation we agreed to put Hutton on the heart transplant program at CHOP at living at home in Tennessee we have anxiously, excitedly and patiently waited until July 7, 2011, (7.7.11 which is God's perfect numbers) when we got THE CALL of a new heart for Hutton.

Hutton's transplant surgery went exceptionally well and her new heart is working well, however she is struggling through some physiological changes which are very normal and expected in the heart transplant process.  These are certainly uncharted waters for Hutton and for our family and we grit our teeth as we learn each day how to trust in The Great Physician for strength and direction as we walk through the chapter in Hutton's life story."

despite me being all knotted up that the sky would dump ginormous raindrops on the three of us,

hutton was just her delightful happy healthy sassy self.

 i thoroughly enjoyed following her and abiding to her agenda for a little while.

it was a diamond day for sure.

an answer to prayer...to many prayers

time with a precious friend

and a celebration of her baby girl, hutton

( & matilda jane and hunter boots, ya'll should hire this little model!)

it took me a little longer to work on her pictures for her patient mama.

i wanted each one to be perfect for her.

yesterday as i was working on them & a beautiful song came on pandora.

i couldn't help it...tears just wouldn't stop.

while i can't even begin to imagine the all the emotions & fears jill and david

have dealt with the last 5 years,

the joy of seeing her sweet healthy smile overwhelmed me.

i love this precious little one & rejoice with her family.

i will look forward to photographing her engagement one of these days....

(ok jill? surely i get dibs on that one!)

 

 

 

 

 

 if you'd like to follow hutton's story

written often times by her sweet daddy david

& "meet" the rest of the johnson, party of seven

you may do so here on hutton's caringbridge

(ps- i keep hearing from readers that they are unable to comment.

i've checked my settings & there's basically no restrictions.

even anonymous can post!...so sorry!)

psalm 139. 13&14

For you created my inmost being;
    you knit me together in my mother’s womb.  

 I praise you because I am fearfully and wonderfully made