Skylar's Place

Please email comments of how we may improve, thank-you.
A +
A
A -
B +
B
B -
C +
C
C -
D +
D
D -
F

Believing all children are blessings from God. My husband Michael (Mike) and former wife Tammy were blessed with one son; Justin and one daughter; Alyssa. As life happens and doesn't ask us what we want from it. Several years later; Mike & I married and were blessed with our daughters Eva; Kaily and Skylar (Sky). Although Justin was born prematurely and nearly died; Alyssa; Eva and Kaily were born healthy. Sky seemed as healthy as her sisters were, during the first few days after her birth.

At two-weeks old; Sky quickly developed concerning symptoms of Jaundice, frequent vomiting and weight loss. Her pediatrician referred her for an immediate re-examination, by a Pediatric Hepatologist - A doctor that specializes in liver diseases of children. We were informed that before Sky was born, her liver developed a deadly disorder; Biliary Atresia (Bill-ee-ary A-tree-sia). Biliary Atresia is a condition that destroys the liver bile ducts inside and outside of the liver. Liver bile has toxic waste that the liver takes out of a person. When the liver isn't able to drain itself of the toxic waste. The liver becomes scarred and begins to not function properly. Sky needed a liver transplant before she was two-years old to live.

At seven-weeks old; Sky urgently needed a Kasai Procedure. This procedure kept her alive while waiting to be chosen from an organ transplant list. Patients on an organ transplant list are not listed on a first come, first served basis. Patients at the top of the list are in the most critical condition, or near death. A Kasai Procedure is an operation that allows the liver to drain toxins. Although most children have the Kasai Procedure. Surgeons usually aren't able to repair their damaged livers, enough for it to function properly. Once Sky received her liver transplant she’d be under the frequent care of staff at the American Family Children's Hospital - AFCH.

June 2000 - Not knowing if Sky's wait were to be hours, days, weeks, months, or if she'd die before her liver transplant. We kept close to home and prayerful that she remained in stable condition. Yet, her condition kept fluctuating between stable and critical, at an alarming rate. Everyone (our family, friends and respective churches) prayed for her often. After what seemed like a year of waiting, we received an urgent message from the AFCH. They requested to admit Sky for her liver transplant. We felt elated believing our prayers were answered! Unfortunately, we were quickly disappointed. The donor liver had belonged to a teenager, that died from fatal brain trauma while bike riding. Even the smallest half of the liver was too large to fit into her tiny and frail body. We felt happy for the organ transplant recipient patient(s), receiving the teenaged donor's organs. Yet we felt equally disappointed knowing Sky's condition was still critical. She continually lost weight, vomited easily digestible foods and became increasingly weak. Her prescribed pain medication, managed her seemingly severe pain. But it caused a side effect of increased drowsiness. Complicating her feedings and medications. Our worst nightmare imaginable was that she'd die before she'd receive her donor liver.

Finally our long emotional wait was over. God had provided for Sky's desperate need! The day arrived for Sky's liver transplant. We felt a mixture of intense emotions, anger, fear, helplessness, joy, sadness, thankfulness and hope. Her donor liver had belonged to a brutally murdered baby. Dying from intentional child abuse that caused fatal brain trauma. The murderer of this precious, innocent baby was the father! We imagined that it was of small comfort, to the loved ones of this murdered baby. Knowing that Sky's new liver allowed this helpless and broken baby to live on through her body. As well as the new organs in the bodies of the other babies. We were hopeful but frightened of losing Sky to organ rejection. We prayed for faith to focus on each day only as it came. We prayed for strength and courage to trust God unconditionally, with Sky's health and life. As everyone prayed with us, for a successful liver transplant. God granted us the strength and courage that we prayed for.

After nearly ten seemingly unbearable and emotional hours, God had answered our prayers. Sky survived her liver transplant! As we watched over her in the PICU - Pediatric Intensive Care Unit, we held back our tears. She seemed deathly still, having to be sedated to prevent her tubes, wires and monitors from disconnecting. Thankful she was alive although her condition was critical. The unknown of her fragile body rejecting her new liver, at times, terrified us. She was heavily medicated and didn't seem to recognize me or her daddy. As her condition continued to fluctuate between stable and critical she needed to stay in the PICU.

Hours, days and weeks went by, finally, Sky's condition went from stable to fair. She was well enough to be moved out of the PICU. Into a unit where she was able and thrilled, to play with the other hospitalized children. Then without warning, her new liver developed complications and she was rushed into surgery! We felt panicked, not knowing if she was strong enough to survive another surgery, her third. Again, everyone prayed with us, that she survived through this nightmare. While we waited, I remembered those precious moments of Sky, happily playing with the other hospitalized children. Again, God had answered our prayers, though as a precaution, she was moved back into the PICU. Weeks passed, each day of each week, her condition again continued to fluctuate between stable and critical. As she fought infections and complications, time seemed to pass slowly. I deeply missed my children and husband, as I was alone with Sky the majority of her hospitalization.

My husband Mike has Brittle Diabetes - severe Diabetes that requires frequent medical attention. Mike often stayed at home, to care for Sky's brother and sisters. To prevent Justin and Alyssa from missing school. And to allow our toddler daughters; Eva and Kaily enjoy being home. When Sky's condition became critical, it seemed impossible, in finding an affordable, reliable, trustworthy and immediately available caregiver for her siblings.

Parents and siblings of hospitalized children are welcome to stay at the Ronald McDonald House. Providing that rooms are available. Knowing this, seemed to relieve a tremendous amount of our stress. Thankfully we received gasoline vouchers to travel to and from the hospital. Monthly state issued, food card account assistance and WIC - Women - Infants - Children vouchers. WIC vouchers for Eva; Kaily and Sky that provided calcium and protein enriched foods. However, it was often difficult for Justin; Alyssa; Eva and Kaily to maintain their daily schedules. They seemed to especially thrive in their familiar home environment. More so than in Sky's hospital room, the hospital playrooms or even the Ronald McDonald House.

While Sky's medical insurance paid for her medical care. The expense of her medical insurance co-payments, non-covered medical and personal necessities, overwhelmed us. In addition to our monthly household expenses. The expense of personal necessities for Justin; Alyssa; Eva; Kaily and Sky. Total expenses were nearly twice our monthly income!

We were at our emotional, physical, financial and spiritual limit. We prayed for courage, to not fear the unknown, of Sky's new liver developing complications. Failing when another liver organ donor was unavailable. Other issues seemed impossible at times. Our staggering expenses, nearly twice our monthly income. Being forced to make frequent partial/non-payment of rent, utilities, etcetera. Quite often resulted in past-due notices. The need and desire to devote constant equal time, to all five of our children and our marriage. Our marriage became so painfully strained. We considered divorce.

Thankfully, Mike being raised in a Christian home, knew of God's promises. One of God’s promises in the Holy Bible ERV - Easy to Read Version - 1 Corinthians 10:13 - The only temptations that you have are the same temptations that all people have. But you can trust God. He will not let you be tempted more than you can bear. But when you are tempted, God will also give you a way to escape that temptation. Then you will be able to endure it. I believe this verse means that God never allows His children to suffer alone. He has promised unconditionally, to give us grace and strength to endure any painful event in our life that occurs. God gave us the strength and faith we needed to stay positive each day, good and bad. The best day of all - Sky was well enough to celebrate her first birthday at home! For nearly four years of her life, after her liver transplant. Sky suffered many setbacks. Although she was a tiny little girl, she'd quickly recover and on good days immensely enjoyed playing.

Early April 2004 - Sky was flown by UW Hospital Med-Flight to the AFCH. Complications of an earlier ear tube placement surgery had developed. It was determined that fluid had filled her lungs and Sky needed sedation to remove the fluid. This procedure, expected to take thirty minutes, unexpectedly took more than a hour! The procedure caused deadly complications to develop for Sky. Resulting in a massive stroke and cardiac arrest!

Although Sky's heartbeat was restarted. We were informed that our daughter was comatose and not expected to recover. We expected she'd recover as always. Simply telling her we loved her and that we'd be there when she woke up, before she was sedated. It was too late, in saying our always intended, final words to her. She was placed on pediatric life support and kidney dialysis. Being comatose, she was unresponsive to our voices. Everyone prayed with us asking God to heal the damage of her massive stroke. Proving to her doctors that He truly exists and miracles large and small, still happen everyday!

Mid April 2004 - Sky's doctors examined her daily, determined her quality of life. Monitored the failing percentage of her organs. Her brain function began to fail. We knew that unless God intervened, our daughter dying, was to become a reality. Earlier, in the year of 2004, we were informed that Sky needed a kidney transplant, and a second liver transplant. We were also informed Sky was in the early stage of Spinal Cancer. Surgery wasn't an option, she had numerous large cancerous spinal tumors, impossible to remove without paralyzing her. As the anti-rejection medication will destroy the immune system and may cause Cancer.

April 29th 2004 - Sky's doctors replaced her pediatric sized kidney dialysis and life support with an adult size. Yet, her condition went from critical to grave. Medically, her doctors were no longer able to save our daughter's life. Although Sky's medical condition was grave. Everyone continued praying for God to heal her. As we believe that God truly hears and answers all prayers. His answers are YES, WAIT or NO. We realized that our prayers were indeed answered. God's answer was NO. Perhaps, He chose to spare Sky the excruciating pain of Spinal Cancer. The seemingly endless suffering through the cancer treatments she'd need to endure. Needing to endure a double organ transplant. Realizing this was of small comfort to us. We weren't prepared to lose her, yet we knew she’d no longer suffer. When a life tragedy happens, to mortal humans, it may anger us and it may seem unfair and cruel. However, God has reason to allow His children to suffer through tragedy. Perhaps, to strengthen our faith in Him. Or to spare us far greater pain. He will always be with His children, through our most difficult moments. Providing comfort always whenever we ask Him. He truly does what is best for us, while teaching us lessons, that we must learn to thrive as a Christian. Just as a human parent does what is best for their child, teaching them lessons, that they must learn to thrive as an adult.

April 30th, 2004 - As our shock wore thin of early 2004, devastation set in. We desperately prayed asking God to allow Sky to hear us! Awakening from her coma, even for a few moments. We needed her to know - how precious she'd always be to us! That - we'll see her when Jesus brings us to Heaven. That - until we see her again, our family members there in Heaven will be with her. That - Heaven is a vibrantly beautiful place, nowhere on earth will ever compare to. That - she'd never be in pain again. That - Jesus will always be there to hold her and wipe away her tears.

May 1st 2004 - Sky's vital organs continued to fail, we were encouraged to discontinue her life support. We invited our parents, siblings and our children to Sky's hospital room that evening. Moments after nearly everyone arrived, we were spared the need to discontinue Sky's life support. As we watched her heart rate monitor fall to zero - indicating that her heart stopped beating. In that moment - there was no struggle or noise - just peace as Jesus took her to Heaven. For a small amount of closure after the medical equipment attached to her was removed. Each family member there in her hospital room had the honor of holding Sky. Tears flowed freely, grieving for Sky, as we all held her one last time.

Sky's incredibly genuine gift of love, gentleness, strength and courage. Has deeply touched the hearts of everyone that knew her. Her friends and family were given a brief - yet timeless and precious gift of her. For us, she will never be forgotten. As Sky's mama, my heart constantly aches and I grieve for her often. Nearly everyday something I hear or see, reminds me of Sky. Though I may grieve for her now. God assures me, that only through Salvation, one day I will see Sky again - forever! It makes me smile as I imagine holding her close to me, giving her kisses and hugs.

Another of God’s promises in the Holy Bible ERV - John 3:16 - Yes, God loved the world so much that He gave His only Son, so that everyone who believes in Him would not be lost but have eternal life. John 3:17 - God sent His Son into the world. He did not send Him to judge the world guilty, but to save the world through Him. Death is merely a door that allows Christians to enter Heaven to live with our Father God and His Son Jesus.

If Sky were alive today, she would've wanted to help children that have illnesses, needing an organ transplant. Since 2013, a new children's charity is becoming a reality. My sister-in-law, Theresa Heisz founded this charity entitled: Skylar's Wish Children's Charity of Wisconsin or Skylar's Wish in memory of Sky. (Please click on the link entitled: Our Charity at the top or bottom of this Webpage for more information.)

Mike & I relate to every parent that has a child born with Biliary Atresia, needing/receiving an organ transplant. Or that has lost their precious child, due to organ failure that needed/received an organ transplant. If you wish to make a difference to these seriously ill children. Begin by sharing Skylar's Wish and Skylar's Place Websites, through e-mail, Facebook, Twitter, LinkedIn and every social media outlet available to you.

From our hearts - we thank-you for your time to read Skylar's Story.

Brandy Knappenberger - Mama of Sky