Friday, August 30, 2013

Kayli's spine surgery was a success!!!

Kayli's spine surgery was a GREAT success!!! She was expected to lose 4+ units of blood, but actually only lost apprx 1 unit of blood!!! Her spine was much, much worse than the Xrays showed. Kayli's spine self fused at the T10-T2 (basically her whole thoracic spine), in the fixed, severe, Lordosis curvature. Kayli was in the most traction she could have effectively been in, before releasing her muscles, tendons, and cutting the auto fusions in her spine. The surgeon was able to release her entire spine, and cut the fusions. Before closing Kayli, he placed the screws and Mersilene tape inside her, with expectations of going back in next week to put the rods in. He could have put the rods in today, but he anticipates that with releasing the fusions and muscles that were holding Kayli's traction success back, Kayli will correct EVEN MORE when put back into traction for a week, before placing the rods!!!
So, Kayli impressed all with the low blood volume loss, the extreme curvatures and unknown fusions, and the success in traction with what she was dealing with! The outcome is already MUCH better than expected, with anticipation of even more correction to come!!! oh, and Kayli's bone density was excellent!!!  We are praising the Lord, Surgeon, Dr's, and Kayli's Krew for all their belief in, and support of Kayli!  #Shout out of Thanks to YOU for also believing in, and praying for Kayli and our family!!! 

Thursday, August 29, 2013

Spine surgery in the morning!

 The LORD is my Shepherd, I shall not  want. 
He makes me lie down in green pastures, 
He leads me beside quiet waters, He restores my soul. 
He guides me in paths of righteousness for His name's sake. 
Even though I walk through the valley of the shadow of death, 
I will fear no evil, for You are with me; 
Your rod and Your staff, they comfort me. 
You prepare a table before me in the presence of my enemies. 
You anoint my head with oil; my cup overflows. 
Surely goodness and love will follow me all the days of my life, 
And I will dwell in the house of the LORD forever. 

Thank you all for your prayers of guidance and comfort as we anxiously face a tough surgery in the morning. We have faith that Kayli will be in the presence of the Lord tomorrow, as she is every moment of her life.  If it is God's Will, we ask that He guides the surgeon and Kayli's Krew so that they produce a successful surgery and recovery.  We hope that Kayli may continue in life on earth, with an adapted spine.  We do not beg God to spare Kayli's life, but ask that He allow Kayli's light to shine forever.  

This little light of mine, I'm gonna let it shine.
This little light of mine, I'm gonna let it shine, let it shine, let it shine, let it shine.

Won't let Satan blow it out.
I'm gonna let it shine.
Won't let Satan blow it out.
I'm gonna let it shine, let it shine, let it shine, let it shine.

Let it shine til Jesus comes.
I'm gonna let it shine.
Let it shine til Jesus comes.
I'm gonna let it shine, let it shine, let it shine, let it shine. 

Hide it under a bushel - NO! 
I'm gonna let it shine. 
Hide it under a bushel - NO! 
I'm gonna let it shine, Let it shine, let it shine, let it shine. 

Let it shine over the whole wide world, 
I'm gonna let it shine.
Let it shine over the whole wide world, 
I'm gonna let it shine, let it shine, let it shine, let it shine.

Kayli is scheduled to go into surgery at 9am.  We will have a private surgical waiting room, as her surgery is expected to be lengthy.  The amazing child life specialists here, will be helping us keep Niko and Jake occupied.  We will update regularly on Kayli's facebook page, Kayli's Krusade, as we receive information of Kayli's surgerical updates.

Sunday, August 18, 2013

4 Years ago today....

A letter to my daughter, speaking of/to her heart

August 17th 3013
Kayli, 4 years ago today, you were at the hospital for pre-surgical testing for your open heart surgery the next day. You had an ASD/VSD/PDA/Double right outlet that needed to be repaired. Every cardiologist who evaluated your heart said you should be a "blue baby", but yet you weren't. Your blood kept pumping in circles, through the major holes in all chambers of your heart. Nobody could understand how you did it, but you weren't blue and you managed to adapt and live with what God gave you. Finishing up with your blood draws, you and I walked down the deserted hallway towards our car. I walked seemingly on a cloud, past the many dark offices, relishing in the fact that we won the battle and you were indeed getting the much needed heart surgery. Just as we were almost free from the tight constraints of the dark hallway, a dr, who's face I recognized, appeared out of nowhere. She intently inquired how you were. I exclaimed "Great! Kayli is having her open heart surgery in the morning!", as I tried to pass her. I dared not to stop and chat, as my goal was to rush home and relish in quite possibly the last night you would spend with us at home. I was slightly annoyed when the dr stood in our pathway, stopping our stride, and lifted the blanket draped over your stroller to say hi to you. At the sight of you, her face fell and she asked how long you were gray. I assured the dr you were fine, it was probably the poor lighting in the hallway that made you look gray. Even as I insisted you were fine, the dr swiftly ushered us to a dark office, turned on the light, and immediately called code for you! The dark deserted hallways quickly filled, as voices searched for you, tucked away in the closed down offices, as if we were playing a game of Marko, Polo. If it weren't for the dr coming back to the hospital through an atypical would not be here with us. Once revived, you were taken to the ICU, a night early. This confirmed your desperate need for heart repairs. The preparations for your most complex and life threatening surgery began....

August 18th
Kayli, it was so hard to imagine you in an operating room, just before the artificial clock chimed 4 months of age. You needed the surgery something fierce, and our fight to get you here was equally intense. Yet you laid in the cart, looking up at me as I secured a birthday bib to your neck. We treated every day that you woke up in our world, as a your birthday. Looking back, I see the irony of that bib on what was to be your re-birth day. Your eyes showed peace and trust, even as my heart raced with angst. As the team wheeled you off to the OR, my body shook as if the building was falling, but others would say I was convulsing with tears that came from my gut. Tears for the joy in the moments I've held you close to my heart. Tears for the fear of an empty tomorrow without you. I would swear my heart ripped from my chest, struggling to be free of my body and go with you, if only it wasn't stuck in my throat. As you were wheeled away, tears fell to my outstretched arm, which was unclear if it was pushing you to help, or reaching to instinctively protect you. As the surgery doors closed, my knees buckled, but somehow I made it to the surgical waiting room...alone in my own doubts and misery. Your Daddy would have been there (probably in more panic than I was) but after a year or so of unemployment, he had just started a job. Looking back, it was probably God's way of keeping him occupied, as Daddy would not have survived the torture of that day. You see, Daddy's like to feel like they can fix the world for their little girl. And your Daddy was better off feeling like he was "fixing" our financial situation, than to feel like a failure, sending you off to what could possibly be your death. Back in the waiting room, which was filled thick with desperation, as fallen faces blankly stared at the tv, I realized I may never see the depth in your eyes again. Fortunate for me, God had placed a photographer for a local newspaper, in our life (that in itself is another story of God's glorious life interventions to bring people together at the right time). Once the photographer came out of your OR, with the hospital PR representative in tow, I had company in the surgical waiting room. She offered her shoulder as I cried, making it look like she just walked in from a rain storm. Only when I stood up with a wet shirt, did I realize she cried with me, as if you were her child too. The tortuously long day went on, while others leaned in, to here me tell your story. Just as we found laughter, and put our worry aside, we were jerked back to reality with updates from the surgical nurse at your side. This emotionally exhausting pattern carried on all day. By the time you were out of the OR, many others had arrived (while some had gone), and were invested in your life, with the story I spoke in your honor. When the dr finally confronted us, with the joyous confirmation of a newly designed heart, an affirmation of a bright future, the room seemed to explode as the emotional bubble burst! Exclamations and shouts filled the room, all intertwined with mine. We jumped with joy, and cried tears of relief. Looking back as we left the waiting room, I wondered if the maintenance crew had to come in with towels to clear the room of our lake, filled with tears of joy...then a second thought told me, "why would they rid the room of such joy?" Now mid afternoon, after a length of time that a worker would spend a typical day at work, you came out of recovery and went your room within the cardiac surgical intensive care unit. I had not "felt" the calming of your soul connected with mine while you were in surgery. I imagined God had sent you away from your body, to join Him, until you were resurrected from the machines that beat your heart in surgery. To see you, oh to see you again...Sweet Pea, there is nothing in this world that can explain a Momma's feelings when she is at last paired up with the soul of her child again. Treasuring you laying there, little did I know the best and worst was yet to come....

To see more of Kayli's story, click here, Video: Kayli comes back to life after 32 minutes!

Sunday, August 4, 2013

A reason for everything

Siblings, Niko, Jake, and Kayli, at the car show 
Kayli's surgery was pushed back yet another week last Tuesday, due to complications in her surgeon's personal life.  We have faith that everything happens for God's reason, and in accordance to His Will.  Since her surgery was postponed, Kayli has had the opportunity to go to a car show, we found a long desired canopy for her hospital bed, and just last night had an opportunity to sleep in her new bed set with her brother! Had she gone in for surgery last week, we would not have had the extended memories of her with us, at home! The rescheduled surgery date to install her Halo, will be in 2 days, this Tuesday.  Please pray that Kayli accepts the help and guidance, towards a life with a corrected spine.  Thank you! <3

Kayli's new canopy for her hospital bed

Hugs goodnight, in Kayli's bed

Watching movies in Kayli's bed