Guest Post: Lana’s Story

The purpose of this blog is to bring hope and encouragement to you through life’s difficulties, and I think that means sharing not only our story, but also the stories of others who have seen God’s tremendous provision in their lives. So, today I am honored to share my dear friend Lana Knight’s guest post. I pray you are encouraged reading about her family’s journey with her precious grandson, Kaleb.

I’m a wife, mother of three grown children, and grandma of one sweet six-year-old boy named Kaleb. Our daughter Tiffany and her husband Blake tried for several years to start a family. Realizing infertility was a factor, Tiffany had three surgeries to try to correct the problems. Her fertility doctor informed her the only way they could have a baby on their own was to do in vitro fertilization. With great hope and anticipation they proceeded with the long stressful process, only to find out it was not successful.

They tried a second time with no success and planned only once more before giving up. With their third try they were blessed to be with child. Excitement for them, but also for my husband and I as we began dreaming of vacations, sleepovers, school events and sports to share with our grandchild. Tiffany’s doctor watched her closely with ultra sounds and tests, finding out the exciting news they were going to have a boy, but also some disturbing news that there was something not quite right.

In the ultra sounds they could see the baby’s heart was not formed correctly and he only had half a heart. Plans were being prepared for immediate surgery to re-route the heart’s arteries at birth, then two more later. They were prepared for the first surgery, but not prepared for what was to come.

Tiffany was to have the baby at IU Hospital, which is connected to Riley Children’s Hospital. After hours of inducing, the baby went into emergency and Tiffany went in for immediate cesarean surgery. Kaleb was born, and wisped right past us into a room, door closed and doctors grabbing for Blake to follow. Emergency equipment rushed in and Kaleb was wheeled at a jog pace to Riley. We found out he had a heart attack in the delivery process and his heart was way worse than anyone expected.

Kaleb was in the NICU with equipment attached to him to keep him alive. Extensive testing showed Kaleb had pulmonary atresia and coronary atresia. His heart was so deformed he did not have any pulmonary arteries and only one coronary artery, which was not even attached. He had absolutely no chance to live. There have only been 12 documented cases of this disease, and none alive. Kaleb was the first case they have ever seen alive. His only chance to survive would be an immediate heart transplant.

The odds were so negative; newborns rarely give a heart transplant, the match would need to be perfect, and Kaleb had no chance for surviving through the night. Blake called the family in to give us the news. We were told we could go down to the NICU one at a time to say goodbye. Kaleb could not be touched, as it would make his heart rate rise and would send him into cardiac arrest. All we could do was pray, pray and pray. I held on to the hope that God does hear us, and He alone would bring a heart for Kaleb, and keep him alive until it was available.

The new daily routine would start with Tiffany calling me with an update at 11:00 a.m. after the doctors made their rounds. Each day doctors were in awe he was still hanging in there. On day 20 she called at 7:00 a.m. My heart sank as I prepared myself to hear the sobs on the other end saying Kaleb was gone. On the contrary an excited voice explained there was a heart available and they were prepping Kaleb to place him on the bi-pass. After an all-day roller coaster of emotions, Kaleb was in recovery with a new heart. He had beaten all odds of surviving, and astonished many doctors. His life would never be “normal” however, as he had received brain damage from all the cardiac arrests his first three weeks of life. The extent would not be known until he began to develop and grow.

Kaleb was in the hospital almost 6 months after his transplant. He could not get off the ventilator and constantly aspirated. Once finally home, he could not eat. He had a J tube, and then later a G tube as well, placed in him to administer all of his 22 medications necessary to keep him alive, and feed him. As he developed and got older he began having seizures. We realized he could not talk, and at the age of 2 years he was diagnosed with autism. Medications were tweaked and he began to have ticks of shaking and moving side to side. Doctors also discovered Kaleb had the CMV virus, which he received from his transplanted heart. The virus could be deadly. When the virus went active he was hospitalized. At the age of 4 years old Kaleb became weaker and sicker. He could no longer hold any formula down and vomited continuously. Results from his heart biopsy showed the CMV virus had gone active and his body had begun rejecting his heart. November 2014 he was listed for another heart transplant. July 2014 Kaleb could no longer continue without medication through IVs and was hospitalized. For six long months I visited twice a week in the hospital, praying and holding on to hope that our God is a God of miracles and hope. He had shown that in Kaleb’s life since birth.

On January 30, 2015 Kaleb received another heart transplant. He was home from the hospital by April. We celebrated his 6^th birthday in July. He continues to have medical setbacks. At this moment as I am typing, Kaleb is in the hospital with a virus infection that has caused him to have stroke symptoms. I continue to be reminded of God’s work and faithfulness in Kaleb and hold onto the hope that we have in Jesus. As grandparents we cannot have sleepovers, or take vacations, or watch him play sports, but I am so thankful for the precious gift of Kaleb in our lives. He is God’s miracle!