MOMentous Monday is a series of reader submissions. For these specific posts I turn the mic over to a fellow woman/momma and they share their personal story. Today I will be sharing my little space with with a mama who knows what it is like to fear for the health of her child. Her relentless faith is beautiful and inspiring.
There is something so beautiful in knowing that you are not alone and Toni’s bold faith is sure to take your breath away as it has mine. You may recall the beginning of this story… Toni first shared last November and this is update on her sweet girl.
Toni, thank you for letting us be part of this journey. I promise to continue to pray for Libby Kate.
Libby Kate does cartwheels. She has always done cartwheels. I guess you could say, they are “her thing.”
It was Thanksgiving 2014 when her tears became so real we knew something was wrong. It was no longer the “it’s okay” and “shake it off” moments of parenting, but the opposite that scare you to death and leave you paralyzed in fear. Libby had spent the previous few weeks complaining of her heart hurting which we didn’t think it was anything more than growing pains or too many cartwheels.
When her “heart hurting” check it out trip to our amazing pediatrician turned into seeing a pediatric cardiologist immediately, and that led to monitors and more doctors…we kept telling ourselves that she was fine…totally fine. This was the normal precaution. This is what they do. So Libby wore 5 leads and had a monitor that traced her heart round the clock.
Then the phone call came. One evening as I had just kissed her goodnight, LifeWatch, called for reasons we wouldn’t have dreamed of. Her heart had stopped. And she was not responsive. After 15 seconds that felt like hours, she slowly opened her eyes, and her strong little heart started beating again. The following morning, the phone rang off the hook. We paced and asked questions. Long and short, her cardiology care at the time didn’t feel they had the expertise or understanding to know what was going on and referred us to the Heart Institute at Children’s Hospital Colorado, and Dr. Kathryn Collins. For her own information gathering she repeated some tests and had Libby wear a holter monitor for another day. All the while, Libby was still doing cartwheels. Seriously, in the doctor’s offices, hallways, you name it.
Then Dr. Collins called. It changed everything. From the initial holter results, Libby had what is called Total Intermittent A/V Heart Block. She had blocked 8 times in the 24 hours. The options for moving forward narrowed quickly and the timeline shortened. Dr. Collins suggested surgery to put in a pacemaker within a couple days. At the eve of Christmas Eve, this brought us to our knees and to the manger of our Savior. Our faith, drew us to Him and compelled us to trust ever more in His promises. This year for Christmas, we were not only given the gift of a Savior, but the gift
of perspective. The hustle and bustle of the holidays quietly disappeared. Libby’s surgery was scheduled for New Year’s Eve. We took each day as it came and had to walk trusting that Libby was in God’s hands especially until we could get her into the hands of a surgeon. The perfect surgeon was put in place for us. Dr. Max Mitchell.
During her pre-op consult with Dr. Mitchell, we received incredible news that the full panel of holter results came in just in time. The results were not as expected. By the grace of God, her doctors and surgeon had time to adjust their game plan on the type of pacemaker they were going to implant. Dr. Mitchell gave us a promise we would hold on to for every second of the surgery and really, for every day of her life. With incredible confidence he told us that not only would her heart be in his hands, but his hands would be in His hands. That’s it. That was a game changer. His incredible confidence enables ours. We prayed for him. We prayed for his team. We prayed for every doctor and nurse there to support the both of them. What a gift! These were the people that God had given us to make her better. All this seamlessly orchestrated by the God who loves Libby more than we can ever know has put the most amazing people in place for her surgery. All on His timeline. Each person and each situation weren’t a coincidence, or good luck, but integral pieces, beautifully crafted by His amazing hands.
Within hours, Dr. Mitchell’s hands were on our little girl’s heart…closer to it than her dad or I
will ever be. 5 hours later he was meeting with us, telling us everything went beautifully. His incredible talent and precision, along with the support and resources of the amazing OR cardiac team, gave her heart the everything it needed. This little pint sized bundle of energy now had a pacemaker to keep those cartwheels going.
We were able to be with Libby within a couple hours. She was brave. She was strong. But she was weak, exhausted and hurting. As parents, there are not too many things that are harder than seeing
your child have to endure something you cannot take away from them. But with that perseverance, and through that pain – comes incredible strength.
The road to where Libby is today has been filled with ups and downs. Her feisty little heart has found ways to keep us all on our toes ever since her surgery 18 months ago. The programming of her pacer has proved tricky at times, but unfortunately all the while, Libby still complained of her “heart hurting.” What? Still? No… It couldn’t be. She is okay. Everything is fixed now, right?
Months of frustrations, constant trips to the docs, more monitors, more tests, and more labs and nothing. But she was still hurting. She was hurting and sick of it all. She wanted to be a regular kid and just do cartwheels. Cartwheels without her leads and monitors getting yanked off or tangled. Her 7-year-old checkup led us back to her pediatrician. He suggested we get a 2nd team of doctors to follow her case, review her records and see if there was something we were missing. He recommended his alma mater, University of Michigan. This was another series of hurry up and wait events, that are hard, when your child is hurting and you’re afraid their heart isn’t working. Those two don’t play well together in a parent’s head or heart. They pull every last ounce of strength and emotion out of you. Our two other kids had weathered the storm remarkably, but they were still worried because they could see it in our eyes. Was their baby sister going to be okay?
The doctors of C.S. Mott Children’s Hospital in Ann Arbor, Michigan were able to review her entire case with a fine tooth comb. We had multiple conference calls and the last one ended with tears. An incredible amount of tears. Dr. Norris said that what Libby had, TIA/VHB, was a silent killer. He rarely was on this side of the case talking to parents. Rather, it often left everyone asking questions
of how and why this could happen when nothing else was wrong. He said, “God must have big plans for your little girl.” The pain she is experiencing, while markedly real, is not cardiac related. He is 100% confident in the care she is receiving from the doctors at HICHC. “This pain, thank God for it. This pain saved her life,” he said. Then came the tears. Tears of joy, thanks, exhaustion, worry, disbelief…all burst forth from somewhere I didn’t know I had. I guess you hold more in your heart than you’ll ever know. From the heart of one momma to her baby…from a dad for his little girl…the tears kept flowing.
Today, she’s doing cartwheels. Actually, even better than ever, they’re turning into aerials. Following the directives of her doctors, we started down a road to explore possible GI issues. Turns out…Libby has acid reflux, or “heart” burn. (It’s ok…you can insert your smiles and laughs here. We see the irony too.) A simple probiotic and an oil regimen keep her healthy, happy, mostly pain free, AND doing cartwheels.
What an incredible God we have that He gave her this pain. It is an awesome and humbling experience when he allows you to see the reason for pain and hurt in the scope of a situation or a lifetime. But, sometimes he chooses not to show us the “why”; And to that, we say “okay” and just keeping cartwheeling towards Heaven.
We are so thankful that on the last day of December, in 2014, God used our little Libby Kate to
introduce our family to Jordan Brandon. As we have navigated the last 18 months, he has continually checked in on his little pal, and sent many virtual hugs. He has been a bright spot in her trips to Children’s, and a constant support to our family. Last year he rode a grueling 181 miles, over 3 mountain passes in the Courage Classic …to make a difference for her little heart, and every other little cardiac kid out there. We will always thank God for this man who is an incredible friend, amazing advocate and caring nurse. God has given us a gift through him. Our heartfelt thanks go out to you, Jordan!
Our time under the care of the cardiac team in the CICU was the best it could be! The cardiac team will forever hold a special place in our hearts and continue to be in our prayers. You are amazing people for all you do, day in and day out. Thank you. We cheer each and every one of you on, as you train, fundraise, climb and race this summer in the 2016 Courage Classic.
GO CARDIAC CLIMBERS! WE LOVE YOU!
~Dave & Toni Koelpin